Coordination of Services

Flexible Funding

Data Collection and Analysis

Advocacy and Quality Assurance

Although these recommendations are not final, it appears that the work group has essentially put off the identification of "the number of waiting lists, the number of people on each list, what services they need in order to move to a less restrictive setting, and a schedule for when those needs will be met."

(b) PROGRESS IN COMMUNITY INTEGRATION

At the time the Olmstead planning process began, Maine had already made significant progress in reducing institutional populations. With the closing of the Pineland Institution in 1996 as the result of a consent decree, Maine became the fourth state to close its state institutions for persons with developmental disabilities. In 1998, the average combined daily census for the Augusta Mental Health Institute (AMHI) and the Bangor Mental Health Institute (BMHI) was 199, and by 2001 this had fallen to 170, 54 of whom had been institutionalized for more than 12 months.⁵⁹² The reduction in psychiatric hospitalization was also the result in large part of litigation, a class action suit seeking community services for residents of AMHI.⁵⁹³ An unusual feature of Maine's progress in community integration is decreased reliance on sheltered workshops, as evidenced by the fact that only 1 percent of more than 1,000 case closings in Maine's vocational rehabilitation system were sheltered workshop placements.⁵⁹⁴

In 2000, 145 persons with developmental disabilities lived in nursing facilities in Maine; more than 150 persons were housed in ICFs/MR of seven or more persons; and the state had more than 5,300 licensed beds in large board and care facilities, more than 80 percent of them housing more than 10 residents.⁵⁹⁵ Maine's nursing home population is falling: It decreased by 12.3 percent from 1996 to 2001, to 7,189; the number of beds fell by a comparable percentage; and Medicaid spending on nursing facility services fell by almost 10 percent during the same period.⁵⁹⁶ One reason for decreasing nursing facility use may be Maine's use of pre-admission screening, using a uniform assessment instrument and a single, independent agency performing the assessments, to reduce reliance on institutional care.⁵⁹⁷ Another may be the rise in the use of assisted living facility services. The population of these facilities more than doubled between 1995 and 2001, from 2,174 to 4,602.⁵⁹⁸ Given the breadth of the work group's charge and the large number of Maine elders living in congregate settings, it is rather surprising that the work group did not more explicitly address the unnecessary segregation of elders. Notably, the AAAs and grassroots organizations of elders did not appear to be represented on the work group.⁵⁹⁹

On July 25, 2000, Governor Glendening issued an executive order creating a Community Access Steering Committee (CASC) charged with developing "a comprehensive plan to expand community access opportunities for a broad spectrum of individuals with disabilities." A year later, the CASC issued recommendations to the governor.

The committee was composed of the secretary and three other officials from the Department of Health and Mental Hygiene, the director of the Governor's Office for Individuals with Disabilities, the secretary of Budget and Management, a representative from the governor's office, three providers (including an assisted living provider), and three advocates.⁶⁰⁰ The character of the committee's recommendations was summarized succinctly by the Department of Legislative Services in a Fiscal 2003 Budget Overview: "Many of the committee's recommendations were administrative in nature. ... Some recommendations involve expanding services but do not specify funding sources or funding amounts[, f]or example, the exploration of opportunities to develop pooled funding on a regional basis to expand limited transportation resources, or expanding crisis response and respite care programs for people who live in the community."⁶⁰¹ Four members of CASC dissented from its final report.⁶⁰²

In September 2001, a broad coalition of disability organizations, including The Arc of Maryland, the Brain Injury Association of Maryland, the Maryland Statewide Independent Living Council, Maryland ADAPT, On Our Own of Maryland, the Maryland Association of Psychiatric Support Services, the Maryland Developmental Disabilities Council, People on the Go, and numerous other organizations, published a response to the CASC report.⁶⁰³ The Coalition charged, "The report does not move a single person nearer to freedom than they were prior to July 25, 2000, when the Governor issued his Executive Order."⁶⁰⁴ The coalition made the following recommendations of its own:

Close state institutions, which "drain funds from the resource-starved community-based services system that most people with disabilities utilize and prefer."

Bring in more federal dollars to support community living by taking advantage of opportunities to expand Medicaid, which state officials have ignored, and cease pouring Medicaid funds into private nursing facilities.⁶⁰⁵

Expand community capacity by securing a stable, well-paid, and well-trained community-based workforce (whereas the steering committee made similar recommendations, the report provides virtually no guidance about how to accomplish this).

• Support consumer-directed outreach and support for people in institutions by funding expanded outreach programs.
• Raise the income level for eligibility for Medicaid from 49 percent to 100 percent of the poverty level.
• Implement the Medicaid buy-in and enable Medicaid beneficiaries to pay a premium to maintain Medicaid coverage after they enter the job market.⁶⁰⁶

Reviewing the coalition's critique, the Department of Legislative Services acknowledged that community placement efforts had foundered but claimed that closure had "proven difficult" and was undermined by "budget woes on the community side of the mental health system."⁶⁰⁷

In any case, the governor's 2003 budget requested funding for only a handful of the CASC's recommendations, which included funding for 60 persons to leave state-run psychiatric hospitals; 65 persons to leave state developmental disabilities institutions; and the first year of a five-year initiative to increase the salaries of direct support professionals (although this initiative had already been funded in the previous fiscal year before the CASC's report was issued). Other provisions in the CASC's recommendations that would require additional funding, such as increasing reimbursement rates for the Medicaid Personal Care Program, an automatic inflationary adjustment in community mental health service rates, and expansion of transportation resources, were not funded. Some of the "administrative" recommendations, primarily the creation of interagency work groups, were accomplished, whereas other recommendations were "under review."⁶⁰⁸

Maryland's new governor, Bob Ehrlich, has promised a radically different approach to Olmstead implementation. In fact, Governor Ehrlich's campaign commitments in the area of disability policy embrace many of the recommendations of the coalition of advocates and begin with the express goal of "making Maryland the first state in the nation to comply fully with the landmark and historic U.S. Supreme Court Olmstead ruling."⁶⁰⁹ The governor's commitments include the following:

• Downsizing institutions and reinvesting the savings from closing institutions into community-based services.
• Retaining a panel of experts to examine Maryland's use of Medicaid dollars in the public mental health system.
• Creating an outreach program, including peer support from people with physical disabilities, developmental disabilities, and psychiatric disabilities, to identify nursing facility residents who may be interested in living the community.
• Addressing the shortage of community-based personal assistance staff (although the governor's position statements stop short of any suggestion that the strategies for addressing this shortage will include higher wages).
• Supporting outreach to consumers in state developmental centers and psychiatric institutions.
• Creating services for people with mental illness caught in the criminal justice system.
• Developing a waiver for people with traumatic brain injury.
• Developing a new state program to provide interim rental assistance vouchers to people with disabilities waiting for Section 8 vouchers. The program would require recipients of these "transition vouchers" to apply for Section 8 vouchers and, when they receive them, to return their interim vouchers to the state for others to use them. The governor acknowledged, however, that because of the state budget deficit, it would not be possible to provide funding for this program in the 2004 budget.

To oversee implementation of these recommendations, Governor Ehrlich promised to elevate the Governor's Office for Individuals with Disabilities to cabinet-level status as the Department of Disability Services.⁶¹⁰

Governor Ehrlich's budget, introduced on January 17, 2003, is a significant first step toward making good on these promises. The budget includes $66 million in new funds for community services for people with developmental disabilities and mental illness in addition to a $128 million increase in general Medicaid funding.⁶¹¹

(b) PROGRESS IN COMMUNITY INTEGRATION

For a state of its size (it has a population of about 5 million), Maryland's institutional populations are large, and its institutional costs are unusually high. In 2000, a total of 709 persons with developmental disabilities lived in large congregate settings, 548 of them in state institutions at daily costs of about $300 a day up to more than $450 for the largest institution, Rosewood. The average daily census of the state psychiatric hospitals was 1,293,⁶¹² and, according to the coalition, more than 2,800 persons with disabilities under the age of 65 are institutionalized in nursing facilities.⁶¹³

From 1996 to 2001, nursing facility population in Maryland increased by 5.0 percent (to 25,361), the ninth highest rate of increase in the nation, and the supply of beds grew at an even faster pace, 9.2 percent, the sixth highest rate in the nation. Medicaid spending on nursing facilities increased dramatically between 1996 and 2001, by 78 percent. There is much force to the coalition's argument that funds feasibly could be redirected from institutional to community services.

(c) SYSTEMS CHANGE ACTIVITIES

When the Glendening administration ignored the coalition's recommendations, Maryland advocates turned to the legislature, which observers claim "has historically taken an active role in shaping Maryland's health care policy."⁶¹⁴ In the 2002 legislative session, bills were enacted requiring residential facilities to provide information to residents about home- and community-based options at the time of admission and on an annual basis; providing a $14 million increase in direct care rates; and approving funding for 100 persons under the Community Choices waiver. However, legislation to establish a traumatic brain injury rehabilitation fund by increasing court costs and to capture Medicaid funding that is available to provide services to children at home who without services will be hospitalized did not pass.⁶¹⁵

In May 2000, Governor Cellucci issued an executive order directing the Executive Offices of Health and Human Services and the Office of Consumer Affairs to develop a five-year plan for long-term care. The report, issued on August 22, 2001, recommended expanding community services, enhancing coordination of services in a highly fragmented system, and addressing workforce development and quality assurance. Governor Jane Swift's administration responded to the report by adding $6.1 million to her next budget to expand supportive housing, enhance adult day health programs, and develop 24/7 care teams to provide evening and nighttime coverage of home care services. The administration promised that although it did not intend to reduce spending on nursing facility services, it would significantly expand funding of community services in the future.⁶¹⁶ To put the additional funding in perspective, the Health Care Finance Working Group reported in June 2001 that "the financial conditions of most home health care providers and adult day health providers are tenuous" and that a gap of $20 million to $25 million existed statewide between revenue and the actual cost of home health care.⁶¹⁷ In any case, the administration reversed course in July 2002 when, in response to a loss of $2.4 billion in the state's revenue base, the governor proposed a budget reduced by $1 billion that, according to Mass Home Care, an association of home care providers, "would cause home care services to the elderly to fall to levels similar to those of 1981-more than 20 years ago."⁶¹⁸

In July 2001, after advocates for elders and persons with disabilities charged that the state was doing little or nothing to respond to Olmstead,⁶¹⁹ the governor established an Olmstead Advisory Group and directed that an Olmstead plan be developed by an Interagency Steering Committee and an Interagency Leadership Team composed of the secretaries or commissioners of the Executive Offices of Finance, Elder Affairs, and Health and Human Services (including the Division of Medical Assistance, the Massachusetts Rehabilitation Commission, and the Departments of Public Health, Mental Health, and Mental Retardation) and the Department of Housing and Community Development (DHCD). The planning team's explicit inclusion of the state housing agency in the planning process is unusual and certainly a positive step. The advisory group, which included advocates and community providers, conducted a series of listening sessions between November 2001 and January 2002 and received input from nearly a thousand persons. Planning documents were prepared by the Center for Health Policy and Research at the University of Massachusetts Medical School.⁶²⁰

On July 31, 2002, the Massachusetts Executive Office of Health and Human Services released the first phase of the Olmstead plan, called "Enhancing Community Based Services." The document is basically a "plan to plan," although it does outline steps that are logical and consistent with the HHS guidelines. For example, the plan calls for an inventory of people in institutions to identify everyone who is in an institution or at risk of institutional placement and to determine how many people would like to leave the institution or could leave if they had adequate support and if funds could be redirected toward their support. The plan also asks that a single screening and assessment process be developed to identify the needs of all people with disabilities who apply for publicly funded long-term care services. All state agencies providing long-term care services would be required to screen persons eligible for Medicaid who apply for institutional services to divert those persons from institutions by "ruling out" community services as an option before admission is allowed.⁶²¹ The plan calls for the state to establish a baseline of expenditure and use rates for facility-based services and use waiting list data to identify unmet needs for community services that will serve as a basis for planning and policy formation in the future.⁶²² The plan's recommendations in the area of housing are thoughtful and creative, reflecting the presence of DHCD at the table. Some examples follow:

• Have DHCD and MassHousing explore what would be necessary to include universal design in new units they fund or finance.
• Require use-of-lease addendums in publicly funded housing that allow the manager to move nondisabled households from accessible units to other available apartments as needed to accommodate persons with disabilities.
• Develop new housing to the greatest degree possible in areas serviced by accessible public transportation or in areas where fundamental amenities are in walking distance.
• Insure all existing publicly financed housing has completed Section 504/ADA self-evaluations and implemented transition plans.
• Expand DHCD's definition of "homeless" to include persons living in rest homes, rehabilitation facilities, and group homes.
• Work with HUD to change federal law governing project-based Housing Choice Vouchers to allow owners/service providers to identify eligible applicants and maintain waiting lists for project-based units to allow housing with services to be appropriately matched to persons with disabilities.
• Have DHCD and service agencies work together to ensure that Project-Based Section 8 resources are used and allocated to best serve the needs and preferences of persons with disabilities, including the development of integrated housing models.
• Have DHCD and MassHousing conduct use reviews to ensure that targeted Section 8 programs are fully used.
• Research whether underused housing developments for elders and persons with disabilities can be reconfigured to provide more usable and desirable housing units.⁶²³

The next phase of the planning process is a document to be released in January 2003 that is to form the basis of funding proposals for the 2004 budget. In the meantime, the plan set some modest goals: Discharge 157 persons receiving inpatient mental health services from Medfield State Hospital (which is to be closed) and other facilities to new created residential services; create six new Programs of Assertive Community Treatment teams; increase Statewide Head Injury Program's (SHIP) bed capacity by 5 percent; and provide 450 elders already enrolled in the home- and community-based waiver program with enhanced community services as an alternative to nursing facility placement. The most significant and costly initiative called for in the plan, which already was required by the consent decrees and court orders in Rolland v. Cellucci and Boulet v. Cellucci, was the addition of 650 community-based residential placements for people with developmental disabilities.⁶²⁴

Reaction to the plan from advocates was not particularly positive. Attorney Steven J. Schwartz, executive director of the Center for Public Representation, noted from reading the plan, "you don't know how many people in Massachusetts will ever move from institutions to the community and you don't know if it will take two years or 2,000."⁶²⁵ Mass Home Care pointed out that no new state funding is provided for implementation of the plan and that the activities called for are to be carried out using existing resources or federal funds.⁶²⁶

Advocates supported legislation introduced by Senator Berry and Representative Kennedy to maximize federal funding for home- and community-based services and enable Medicaid dollars to follow persons from institutions to the community. S.B. No. 474 and its companion House bill would have required that "an individual eligible for or receiving acute or chronic long term care must be given the opportunity to have those Medicaid dollars follow them to the community and choose the personal care option in the community that best meets the individual's needs. The Division shall apply for any necessary waiver from the federal government to allows funds received pursuant to Title XIX of the Social Security Act to be used for any services necessary to support individuals in their own homes in the community."⁶²⁷ However, the bills died in committee.⁶²⁸

(b) PROGRESS IN COMMUNITY INTEGRATION

Massachusetts is still a heavily institutional state. It housed 2,792 persons with developmental disabilities in large congregate facilities in 2000. The large population of persons with developmental disabilities in nursing homes (1,499) will be reduced, however, by implementation of the consent decree in Rolland v. Cellucci, and the future of the state MR/DD institutions is uncertain given the announcement of Governor Mitt Romney in early 2003 of plans to close all Massachusetts' six developmental disabilities institutions, beginning with selling Fernald Center, the oldest state institution in the nation, and its large campus in the coming fiscal year.⁶²⁹

In 2001, 528 persons in state psychiatric facilities had lived in those facilities for more than a year. Massachusetts has one of the highest nursing facility populations in the nation. In 2001, it ranked sixth in nursing facility population when expressed as a percentage of the population as a whole. Both the number of nursing facility residents and the bed supply have increased by more than 2 percent from 1996 to 2001, but surprisingly, this has been accompanied by a decrease by 14 percent in Medicaid spending during the same period.⁶³⁰

The National Council of State Legislatures reported in March 2003 that Minnesota does not have an official Olmstead task force, because the state already offers many options to support people with disabilities and elders in the community.⁶³¹ State officials cited the fact that Minnesota has closed its state institutions for persons with developmental disabilities and that with only a few developmentally disabled individuals remaining in private ICFs/MR and several hundred people with mental illness in state facilities, the state's progress is sufficiently rapid. Minnesota is the largest state to close its state-operated congregate developmental disabilities institutions, and in 2001 it had only 82 persons in psychiatric facilities who had been there for more than a year.⁶³² Medicaid nursing facility expenditures in Minnesota decreased by 8 percent from 1996 to 2001, although its nursing facility use is still about 160 percent of the national average.⁶³³

However, the Minnesota disability community disagreed that the state did not need to respond to Olmstead and asked the Minnesota Department of Human Services (DHS) to develop a detailed plan to promote community integration. In August 2000, the assistant commissioners of the Minnesota DHS responsible for the Aging Initiative and for health care informed advocates that they saw no need for a plan. On December 22, 2000, Pamela S. Hoopes and Anne L. Henry of the Minnesota Disability Law Center (DLC) wrote to the two assistant commissioners, repeating their request that the state take action to place inappropriately institutionalized persons in the community.

DLC pointed out that, according to DHS estimates, 2,600 Minnesotans under age 65 were living in nursing homes, whereas the state Department of Health placed the number at approximately 3,500. These persons were not being assessed for community placement nor provided with discharge plans specifying the community resources needed to support them in the community. DLC asked that DHS address the insufficiency of the services provided under the state's waiver for persons with physical disabilities and squarely address the barrier presented by the lack of affordable housing.

DLC also pointed to a statement by the state medical director that approximately 67 of 232 persons receiving psychiatric services at Anoka Metro Regional Treatment Center could live in a less restrictive setting and remained at the center because of insufficient community resources and to estimates by other directors of regional treatment centers that approximately 20 percent of the patients now in the regional treatment centers are ready for discharge yet remain in the hospital for lack of community supports. DLC called the pace of DHS's community initiatives "glacial." For example, DHS had agreed to change its screening tool for personal assistance services because it failed to identify the personal care needs of persons with mental illness, yet it had failed to do so.

DLC asked DHS to take the following steps:

1. Screen and assess all current residents of regional treatment centers, Rule 36 facilities, and nursing facilities for possible placement in a more integrated setting. "The assessment should include identifying needed supports in the community, including appropriate housing or programmatic settings.... Each assessment should result in an action plan that describes how needed services will be obtained and how barriers to more integrated placement will be removed. The plan must include a time table." DLC asked that the assessments be completed by April 1, 2001.

2. Provide the disability community with summary information about persons in regional treatment centers, Rule 36 facilities, and nursing facilities who have been identified as being ready for community placement, including information about the barriers that prevent their return to the community.

3. Within 12 months, fund services for persons with developmental disabilities who need home and community waiver services and make available consumer-directed service options in every county within three months.

4. Raise pay rates for personal assistants to levels that will allow individuals who need these services to get them.

5. Cease promoting community commitment of people with mental illness and actively support increased availability of voluntary services. Reserve 20 percent of the beds in the regional treatment centers for people with mental illness who voluntarily seek and need that level of treatment.

(c) SYSTEMS CHANGE ACTIVITIES

Although Minnesota is not developing an Olmstead plan designated as such, the DHS produced a report to the Minnesota legislature in February 2002 that addressed several Olmstead themes, though only in the context of services for elders. The report, "Keeping the Vision: Report to the Minnesota Legislature, Progress in Reshaping Long-Term Care in Minnesota," was a response to long-term care legislation enacted in 2001, the purpose of which was to reduce the state's reliance on institutional services and expand the availability of home- and community-based options. The legislation was probably driven by state officials' concern about the potential for escalating future long-term care costs.⁶³⁴ The statute established a local planning process in which counties were required to analyze the present and future capacity (over the next 10 years) of services for elders, identify the gaps in services, and complete a service development plan describing how their objectives and action steps over the next year would address these gaps.⁶³⁵

Overall, the counties reported a significant oversupply of nursing facility beds and a high need to develop transportation, in-home respite, caregiver support, chore services, affordable rental housing with services, and foster care. The most common barriers to further development of these services were lack of start-up funding, service delivery problems in rural areas, lack of staff, low reimbursement, elders' lack of awareness of services, need to remodel existing buildings, and problems finding and providing services in existing housing.⁶³⁶ The report also found that minority elders in Minnesota tend not to seek traditional services and that more culturally sensitive service providers are needed, especially in urban areas.⁶³⁷

The report used a set of "long-term care benchmarks" to measure the progress of Minnesota counties toward "rebalancing" the long-term care system in the direction of more meaningful access to home- and community-based services. The benchmarks are (1) ratio of senior housing units to persons 65 and older; (2) percentages of non-case mix and elderly in Elderly Waiver/Alternative Care Programs (a measure of the extent to which persons with more significant disabilities are receiving services in the Elderly Waiver and Alternative Care programs); (3) percentage of nursing home residents 65 and older who are Case Mix A (a measure of the percentage of nursing facility residents with less significant disabilities); (4) ratio of nursing facility beds to persons 65 and older; and (5) percentage of total long-term care spending for nursing home care.⁶³⁸ The emphasis on a small number of quantifiable benchmarks to measure progress is a clear, simple way to measure progress and evidently stimulated the counties to consider creative solutions to close the gaps they identified in the planning process. For example, in the area of housing, the counties' proposal included "creating a user-friendly, fast-track small remodeling grant program for providers of adult foster care to create more units"; working with the Housing Redevelopment Authority (HRA) and the Area Agencies on Aging to establish assisted living in HRA sites; and leveraging county housing funds with other affordable housing funds to create assisted living development.⁶³⁹

Another promising practice in the 2001 legislation is offering incentives for closing nursing facility beds. Most states have an oversupply of nursing facility beds; Minnesota had dealt with this phenomenon with legislation in 2000 that allowed nursing facility operators to place beds in "layaway" for up to five years, that is, to take them temporarily out of service and have them be treated as unlicensed during that interval. In the first 18 months of the "layaway" program, nursing facility operators had taken 2,350 nursing facility beds (of a total of 45,103) out of service. The 2001 legislation goes further and establishes the goal of closing or partially closing up to 5,140 beds during fiscal years 2002 and 2003.⁶⁴⁰ This approach is innovative and has made Minnesota one of the leading states in the nation in reduction of nursing home beds: The state accomplished a 9.5 percent reduction from 1996 to 2001. Certainly that sort of reduction is warranted in a state with such heavy use of nursing facility services.⁶⁴¹ With 38,052 persons living in nursing homes in 2001, Minnesota ranked second highest in the nation in nursing facility population when expressed as a percentage of the population as a whole age 65 and older.⁶⁴²

22. MISSOURI

(a) THE PLANNING PROCESS

On April 28, 2000, Governor Carnahan signed an executive order establishing the Home and Community-Based Services and Consumer-Directed Care Commission. The Commission's objective was to develop "a comprehensive, effectively working plan as contemplated by the Supreme Court in Olmstead."⁶⁴³ The executive order instructed the commission to

(1) identify the current number of and current level of funding for home and community-based services (HCBS); (2) develop a tool for assessing the effectiveness of these services and programs; (3) identify the number of individuals in Missouri that are institutionalized; (4) identify the number of waiting lists for HCBS and consumer-directed programs and evaluate the pace at which individuals move from these lists; (5) provide individuals with disabilities who may be eligible for HCBS with information regarding this option; (6) recommend any changes that may be needed to improve HCBS; and (7) recommend any potential means of expanding HCBS.⁶⁴⁴

Fifteen persons were appointed to the commission: the directors of the Departments of Social Services, Mental Health, and Health; the commissioner of the Department of Elementary and Secondary Education; four representatives of the Governor's Council on Disability; three persons with disabilities or family members; and two each from the state Senate and House of Representatives.⁶⁴⁵ The commission held hearings around the state to receive input on the plan, and four stakeholder subcommittees developed recommendations for the commission's consideration.⁶⁴⁶

Even before the plan was published on December 31, 2000, Governor Carnahan signed into law an appropriations bill, H.B. 1111, allowing consumer choice in the use of long-term care funds. The bill, sponsored by Representative Quincy Troupe and Senator Joe Maxwell, provided that

an individual eligible for or receiving nursing home care must be given the opportunity to have those Medicaid dollars follow them to the community and choose the personal care option in the community that best meets the individuals' needs. This includes the Consumer Directed Medicaid State Plan Amendment that is administered by the Department of Vocational Rehabilitation and the Department of Education. ... [I]ndividuals eligible for the Medicaid Personal Care Option must be allowed to choose, from among all the options, that option which best meets their need; and also be allowed to have their Medicaid funds follow them to whichever option they choose.⁶⁴⁷

The legislation was signed into law on June 28, 2000.

The Missouri Olmstead plan describes existing programs, participants, and funding; discusses and makes recommendations concerning development of outcome assessment tools; identifies the number of institutionalized people with disabilities in the state; and identifies the number of waiting lists for services, identifies the number of people on them, and analyzes the pace at which the lists move. It examines whether the available information on community services is adequate for people to make informed choices.

The plan recommends changes in Missouri's service system in seven areas: (1) consumer-directed personal care assistance, (2) housing, (3) interagency coordination, (4) Medicaid services, (5) funding mechanisms, (6) transportation, and (7) employment opportunities for people with disabilities. Specific recommendations include increasing availability of personal care assistant services, increasing their wages, and giving them more training; clarifying the legal status of having them administer medicines and perform other nursing functions; and improving background checks. Others include improving enforcement of fair housing laws; increasing funding for accessible, affordable housing; exploring various tax credit options, requiring use of universal design (making housing routinely accessible to disabled people) in any state-funded housing program; and making information about housing more available through several measures, such as a Web page.

The plan recommends establishing an interagency mandate to "blend funding streams" so people can receive help from more than one agency, designating a lead agency when several agencies are involved with one client, and creating a universal application form for all programs. Other recommendations are to increase Medicaid income and asset limits; expand the types of exempt assets; explore covering all Medicaid waiver services as state plan services; monitor the pace of waiting lists; and make Medicaid services comparable between nursing homes and community settings. The plan recommends additional support during the transition process, such as implementing a person-centered approach, allowing people to set aside part of their Social Security checks while still in the institution to create funds available to set up the new household, and providing extra funding for the transition.

The plan contains timelines for various actions and the agencies responsible for those actions during fiscal years 2001 and 2002. However, it does not set specific longer-term goals.

The Missouri Olmstead plan, along with H.B. 1111, which requires that funding follow the person from nursing facility to community, is generally considered a model response to the HHS guidelines. However, in some respects the plan fell short of recommendations made by advocates. A draft plan submitted by advocates during the planning process recommended that state agencies perform a needs assessment for each current institutional resident and identify "who wants to move to the community and what is needed to live in the community."⁶⁴⁸ By December 1, 2000, the advocates proposed, assessments would be completed and the state would have a list of the names and locations of persons who want to move to the community and the specific types of support, in hours and funding sources, they need to live in the community. During the next year, the persons so identified would move to the community according to a planned transition schedule.⁶⁴⁹ The final plan does not require that institutional residents who could move from institutions actually be identified and provided with opportunities to move. Rather, the plan recommends that state officials measure the rate of community placement, as well as barriers to placement; develop processes to interview individuals to determine if they had informed choice; and monitor waiting lists, documenting why someone is on the list for longer than 90 days.⁶⁵⁰

It is fair to say that the primary strategies for reducing unnecessary institutionalization in the Missouri plan are strategies for informing consumers about community alternatives. The strategies for facilitating informed choice are thoughtful and comprehensive, but these strategies alone are unlikely to be able to overcome the barriers to community placement without more fundamental service system reform.

The state's Olmstead plan contains no specific goals or targets for people who should move to the community to do so. The planning commission was not able to identify the number of persons living in other types of institutions, such as board and care facilities, juvenile detention facilities, or residential treatment facilities, nor did it recommend further work to identify people who are institutionalized unnecessarily in those facilities. The plan does not address the pace of transition, the movement from waiting lists, or how or whether institutional residents will be assessed for community living. Also, the plan does not identify gaps in the service system, the extent to which existing programs can serve as a framework for developing services, or the changes or improvements that need to be made in existing services so people can be integrated into the community.

It should also be noted that the personal care options cited in H.B. 1111 provide only six hours of personal care per day, and thus, according to advocates, the law is not adequate to meet the needs of all persons who are eligible for nursing facility services.⁶⁵¹

Another relative weakness in the plan is in the area of housing. State housing officials were not at the table during development of the plan, and although the plan does contain a number of recommendations to address the housing needs of persons with disabilities, they are quite general and consist primarily of recommendations to "explore" additional housing options and "enhance" availability of desired housing options.⁶⁵²

To oversee implementation of the plan, Governor Holden created the Personal Independence Commission in an executive order on April 10, 2001. The commission's charge includes examining whether existing programs provide people with disabilities adequate information about programs and services, monitoring the transition of people in institutions to the community, and recommending modifications to existing community services.⁶⁵³

State officials supported other legislative initiatives to implement the Olmstead plan. In May 2001, the legislature passed HS HCS S.B. 236, which opted into the Ticket to Work program and allows working people with disabilities to buy into Medicaid on a sliding fee scale, raised the Medicaid income eligibility guidelines to 100 percent of the poverty level over three years, and adopted a program for trained disability advocates to inform people in institutions of community alternatives.⁶⁵⁴ However, most of the legislation introduced in the 2002 legislative session did not pass, including H.B. 1469, which would create parity between institutional and noninstitutional eligibility for Medicaid; H.B. 1719, which would establish the Missouri Quality of Care Trust Fund to fund various long-term care initiatives and programs; H.B. 1309, which would require the release of information about violations by nursing facilities to the media; H.B. 1497, which would create a tax credit for buildings of universally designed lifetime homes; and H.B. 1647, which would require all new state housing construction to comply with universal design.

Like other states, Missouri has experienced funding shortfalls in the past year. As a result of cuts in the budget of the Division of Mental Retardation/Developmental Disabilities for community programs, no new community services will be provided except in crisis situations, and the waiting list for services is not likely to be reduced. Funding for durable medical equipment also was reduced. However, the Ticket to Work Buy-In was funded, including additional funds for personal assistance services to persons who need them to take advantage of the buy-in provision.⁶⁵⁵ One of the specific recommendations of the Olmstead plan, obtaining budget authorization for a waiver to support people with head injury, was not funded.

But unlike some other states, Missouri also responded to the funding shortfall by seeking to cut institutional costs, including a reduction of $20.7 million in Medicaid payments to nursing facilities and a smaller cut in funding for sheltered workshops.

(b) PROGRESS IN COMMUNITY INTEGRATION

Missouri institutional populations are large, and movement to the community has been slow. Medicaid expenditures on nursing facility services grew by a remarkable 88 percent from 1996 to 2001,⁶⁵⁶ and in 2000 the Olmstead planning commission found that more than 26,000 Division of Aging Medicaid recipients were living in institutions.⁶⁵⁷ The population of state developmental disabilities institutions actually increased from 1993 to 2000, from 1,480 to 1,509, although, commendably, the state has significantly reduced the number of persons with developmental disabilities living in nursing facilities (from 2,600 in 1990 to 830 in 2000) and in non-Medicaid-funded institutions (from 1,800 in 1990 to 432 in 2000).⁶⁵⁸ In comparison, the number of persons who have been institutionalized in state psychiatric institutions for more than a year is relatively small, 328 at the end of 2001.⁶⁵⁹

Missouri's nursing facility population was 38,706 in 2001, making it 11th in the nation in nursing home residents as a percentage of the population age 65 and older. Although the nursing home population remained static from 1996 to 2001, the number of beds grew by 5 percent, a significant increase.⁶⁶⁰

(c) SYSTEMS CHANGE ACTIVITIES

Like its Olmstead plan, Missouri's Systems Change grant focuses on facilitating informed choice. The grant is being used to develop resources for training on informed choice, train consumers on how to exercise informed choice, and conduct a pilot study to determine which strategies are most successful in facilitating movement to community settings.⁶⁶¹

23. MONTANA

(a) THE PLANNING PROCESS

In response to Olmstead, the Montana Department of Public Health and Human Services (DPHHS) has issued two task force reports, one from the Senior and Long Term Care Division and the other from the Disability Services Division. The Senior and Long Term Care Division established an Olmstead Advisory Council "to make recommendations to the division and assist with the development of the division's comprehensive, effectively working plan, using the guidelines established by the Health Care Financing Administration and the Office for Civil Rights."⁶⁶² The council met six times in different areas of the state to develop its recommendations, and the chief of the Community Services Bureau then developed a Biennium Work Plan for 2002-2003 that is responsive, in part, to the council's recommendations. The work plan focuses conspicuously on information dissemination about community-based long-term care services and training of personal assistance workers, case managers, and other community service providers.⁶⁶³ It also calls for a study of the impact of transforming some home- and community-based services to state plan services for "a thorough exam of caregiver shortage issues and methods to address them" and the completion of a Traumatic Brain Injury (TBI) implementation grant. Although the plan had a goal to "Increase availability of all community services" and an objective of developing a legislative proposal to increase funding for community services, it set no specific goals, and the proposals for increased funding were equally vague.⁶⁶⁴

The Disability Services Division also developed a Biennial Work Place for 2001-2003 as part of its Olmstead plan. The plan calls for developing up to three new community residential homes to allow 12 persons to move from Montana Developmental Center and Eastmont Human Services Center, Montana's two development disabilities institutions. The plan suggests that more than 12 persons have been recommended for community placement because it also contains a goal of developing a legislative request to create community services for other persons who have been referred to the community. The plan contains goals to enhance "informed choice" through education about community options.

The body of the 65-page plan acknowledges that "there is concern that there are persons committed to the residential ICF/MR facilities who would best be served in community settings but who are not referred to be considered for placement into community settings and services" as well as "concern that persons who would best be served in community settings are being diverted into the residential ICF/MR facilities due to needs or crises in relation to those persons that are poorly attended to when they arise." However, the work plan does not set a target date for identifying persons who could be served in community settings, nor does it address the development of crisis prevention services.⁶⁶⁵

The plan acknowledges that "DPHHS does not have adequate appropriations from the 2001 Legislature by which to initiate an expansion of community service opportunities," but states that the department will evaluate its services and funding sources to determine if more state general fund monies could be used as a match for Medicaid funds to make possible the expansion of the Medicaid-funded home and community services.⁶⁶⁶ According to the Montana Advocacy Program, DPHHS did identify state funds that could be used for the Medicaid match and would have enabled it to implement a provision in the work plan to develop a "transitional living program" for the developmental disabilities offender population, which is growing significantly at the Montana Developmental Center, to move to community settings. However, the governor would not allow the funds to be used for this purpose; they were used instead to meet shortfalls in the state general fund.⁶⁶⁷

Perhaps the most unusual provision of the Montana plan is a commitment to change the department's system for assigning consumers to private providers. CMS determined that the existing system, in which the department awarded provider contracts through competitive bidding on the basis of responses to requests for proposals issued by the department, violated Title XIX's choice of provider requirement, 42 U.S.C. § 1396a(a)(23). The department stated that it has developed a work plan to develop a new model that will allow consumers to select their own providers from those who are qualified to provide the service by July 1, 2003. The plan will address how reimbursement for services will be structured, how small providers will be reimbursed for vacancies, how cost per person will be determined, and the type of waiver services that should be put in place to accommodate the change.⁶⁶⁸

(b) PROGRESS IN COMMUNITY INTEGRATION

In the past five years, movement to the community from Montana developmental disabilities institutions has virtually stopped, and hovers around 130 persons in two state-operated facilities and another 162 in nursing facilities. In the past year, admissions and readmissions to the larger of the two institutions outnumbered discharges, to a large extent because of the increasing admissions of persons labeled as "developmentally disabled offenders."⁶⁶⁹ In 2001, 51 persons had been institutionalized in state psychiatric hospitals for more than a year. A nursing facility population of 5,928 makes it the 12th highest in the nation in nursing home residents when expressed as a percentage of the population age 65 and older. Although the number of nursing facility residents declined by 8 percent from 1996 to 2001, the supply of beds increased by 2.8 percent, an indication that the state has not tied population decline to bed closure.⁶⁷⁰ Medicaid nursing facility expenditures increased by about 10 percent between 1996 and 2001.⁶⁷¹

Institutionalization of children and adolescents with mental illness has increased from 51 in 1997, the year in which the state first adopted managed care to reduce costs in mental health, to 160 in 2002. Montana health care providers have identified this as a "critical problem."⁶⁷²

(c) SYSTEMS CHANGE ACTIVITIES

Montana has a Community-Integrated Personal Assistance Services and Supports grant to alleviate competition for personal assistance personnel. Grant activities include developing a central mechanism for recruiting, screening, and training attendants; tapping underused sources of recruitment, such as older workers; developing a public relations campaign; and developing training modules and caregiver support groups.⁶⁷³

24. NEBRASKA

(a) THE PLANNING PROCESS

Nebraska does not have a task force or other formal method for responding to the Olmstead decision. Rather, the state has focused its efforts at the level of individual planning on placing and supporting qualified individuals with disabilities in community settings; on expanding community residential services for persons with mental illness; and on increasing capacity in community services in mental health, substance abuse, and developmental disabilities.⁶⁷⁴

(b) PROGRESS IN COMMUNITY INTEGRATION

In the past five years, Nebraska has made some progress in reducing the number of persons with developmental disabilities institutionalized in nursing facilities from 454 to 115, but movement from state-operated developmental disabilities institutions and large private ICFs/MR has virtually ceased and hovers around 400 and 240, respectively. At the end of 2001, 70 persons were institutionalized in state psychiatric facilities who had been there for more than one year.

Although Nebraska reduced the number of persons living in nursing facilities by 8.9 percent between 1996 and 2001, which compares quite favorably to the nation as a whole, by 2001 the state still had 14,492 nursing facility residents and was second only to its neighbor Iowa in the number of persons living in nursing facilities when expressed as a percentage of the state's overall population age 65 and older.⁶⁷⁵ Nursing facility beds were reduced by only 4.6 percent from 1996 to 2001,⁶⁷⁶ and Medicaid spending on nursing facilities increased by 75 percent during that period.⁶⁷⁷ In 2000, Nebraska began to implement a grant program to reduce excess nursing facility capacity by converting nursing facility space to assisted living; this may result in a technical reduction in the number of beds, but only replaces one form of congregate living with another.⁶⁷⁸

An unusual study of the residential and daytime settings in which people in Nebraska, Wyoming, and South Dakota lived and worked in 1999 found that of all the persons receiving developmental disabilities services in Nebraska in 1999, only 82 percent were living in the residential setting recommended by professional judgment, and 77 percent were spending the daytime in the setting recommended by professional judgment. These conclusions were based on an analysis of data from the Inventory for Client and Agency Planning (ICAP) collected for almost 3,000 consumers of developmental disabilities services in a wide variety of settings. The report suggests that most, if not all, of the persons who were not in the setting recommended by professional judgment were in a setting that the professionals supporting that individual considered unnecessarily segregated, for instance, living in an institutional instead of a community residence or a group home instead of a supporting living arrangement.⁶⁷⁹

(c) SYSTEMS CHANGE ACTIVITIES

The Nebraska Health and Human Services System (HHSS) has received a Real Choice grant to develop consumer-directed services for people with developmental disabilities and behavioral health needs and elders. Activities to be supported by the grant include access to services through a single point of entry; standardization of regulations, policies, procedures, and contractual language; development of a training curriculum; and public awareness.⁶⁸⁰

25. NEW JERSEY

(a) THE PLANNING PROCESS

The impetus for New Jersey's Olmstead planning process came from New Jersey Protection and Advocacy, Inc., which convened an Americans with Disabilities Act coalition composed of 90 organizations and developed a set of principles for an Olmstead plan. The coalition persuaded Governor Whitman and the New Jersey Department of Human Services (DHS) to convene an Olmstead Stakeholder's Task Force in November 2000.⁶⁸¹ The task force was composed of consumers, advocates, government agency representatives, providers, and other interested parties. The plan was to be published in early 2002, but a change in administration intervened, and a pending review by the new governor has delayed its release.⁶⁸² However, an advocate who was active in the ADA coalition reported that the plan drafted by DHS does not include the action steps proposed by the coalition for identifying institutionalized persons who would like to live in the community, the costs associated with institutional living, the services that currently exist, and the recommended changes; nor does the plan contain measurable outcomes, target dates, or provisions for monitoring and quality assurance.⁶⁸³

Notably, the New Jersey Department of Community Affairs, the state housing agency, was invited to the task force and committed 40 Section 8 Project Access vouchers to Olmstead implementation.⁶⁸⁴ However, the planning group does not include representatives from the Departments of Education or Transportation.⁶⁸⁵

Before Olmstead, DHS conducted another planning effort, called Redirection II, to improve mental health services both in institutions and the community. The Redirection II plan was based on independent clinical assessments of 1,051 nonforensically involved consumers in the state hospitals, 711 of whom had been institutionalized for more than six months. As a result of the independent assessments, the planning group concluded that 388 persons could be receiving services and support in alternative settings and that the hospital beds currently being used to house these persons could eventually be taken off line.⁶⁸⁶ Unfortunately, however, the plan contemplates that at least some of the 388 persons would move to nursing facilities, residential health care facilities, and group homes.⁶⁸⁷ The plan also provides for replacement of the Greystone Park Psychiatric Hospital with a smaller facility of 390 beds. In response to public comments, including strong opposition from state employees' unions, the size of the proposed new facility was increased to 400 beds, with room for expansion to 450 if needed.⁶⁸⁸

Redirection II was not coordinated with development of the Olmstead plan. Nevertheless, it contains many elements of an Olmstead plan. It considers the extent to which existing programs can serve as a framework for developing services and the level of awareness and agreement among stakeholders and how that foundation can be strengthened. It discusses the improvements that can be made to support people with disabilities in the community, and it is based on assessments by independent, university-based evaluators who did not consider the services currently available in the community. The assessment process included reliability measures that further enhance its objectivity. The plan identifies the community-based services available in the state, assesses the extent to which these programs are able to serve people with disabilities in the most integrated setting appropriate, and identifies the improvements that can be made in existing services. It considers how the system might be made more comprehensive and the adequacy of the support the system provides for people at risk of unjustified institutionalization. It looks at funding by addressing some of the infrastructure changes that will be needed to support implementation. However, the plan does not address the pace of transition or the needs of persons on waiting lists for services, and there is no mention of consumer choice.⁶⁸⁹

(b) PROGRESS IN COMMUNITY INTEGRATION

In developmental disabilities, New Jersey is one of the most institutional states in the nation. In 2000, 4,757 New Jerseyans with developmental disabilities lived in large congregate institutions, 3,556 in state institutions, and the rest in nursing facilities and other large private institutions.⁶⁹⁰ The trend toward movement to the community has been steady but slow. New Jersey has not experienced litigation against its developmental disabilities institutions, and institutional closure has resulted in transfer of residents with more significant disabilities to other institutions, whereas those placed in the community were persons with higher cognitive abilities who presented fewer challenges.⁶⁹¹ Because of the state's extremely low investment in community services, the number of persons waiting for services in the community grew from 767 to 5,124 between 1986 and 1997. In the late 1990s, the waiting list crisis had become so acute and visible that a Waiting List Work Group recommended closure of at least three of the state's remaining developmental disabilities institutions to redirect funds to the community.⁶⁹²

In mental illness, during the past 12 years, the reduction of institutional populations has been similarly steady but slow. The state has reduced the population of state psychiatric hospitals from 3,069 to 2,145 (30 percent), reduced annual admissions from 5,611 to 3,633 (35 percent), reduced the number of readmissions by 56 percent, and increased spending on community services by 175 percent.⁶⁹³

With 45,672 nursing facility residents in 2001, New Jersey was in the middle rank of states in nursing home use when expressed as a percentage of the total population age 65 and older. However, the state ranked eighth in the nation in growth of the nursing home population from 1996 to 2001 and fifth in the increase in the number of beds;⁶⁹⁴ during this period, Medicaid expenditures on nursing facility services nearly doubled.⁶⁹⁵ These data are significant in light of New Jersey's claim that it has diverted thousands of elders from nursing facilities by its single entry system for long-term care support, which is discussed below.

Human services in New Jersey have not been as hard hit by funding shortfalls as in other states. New funding has been made available to support the movement of residents of state psychiatric institutions identified for community placement under the Redirection II initiative. However, the 2003 budget also contains funding for 265 new positions in the state psychiatric institutions and an astonishing 514 new positions in the developmental disabilities institutions in response to the threat of decertification for failure to meet federal standards.⁶⁹⁶

(c) SYSTEMS CHANGE ACTIVITIES

Beginning in 1996, New Jersey phased in a single point of access system for all services for elders called Easy Access, Single Entry (EASE). The initiative was supported by a grant from the Robert Wood Johnson Foundation and phased in over a five-year period. The system uses a toll-free caller system that can identify the county from which the call is made and automatically transfer the caller to the single entry office for that county. Callers can obtain information, receive counseling about available public benefits, schedule comprehensive assessments, and arrange for services to be provided. Although the program appears well designed and had strong support from Governor Whitman, it has not reduced resources spent on nursing facility services. Indeed, Medicaid spending on nursing facilities skyrocketed after the program neared full implementation in 1999.⁶⁹⁷

Since 1997, New Jersey has operated a Cash and Counseling demonstration project supported by CMS under a 1115 waiver and the Robert Wood Johnson Foundation. The program provides beneficiaries with cash rather than services from an agency. Persons enrolled in the program may hire friends, relatives, neighbors, or other persons of their choice except for a spouse or legal guardian. They may use the cash benefits of the program to purchase any goods and services related to their personal care. Analysis of the outcomes of the Cash and Counseling program has shown that costs are about 10 percent lower than the cost of agency-based services and that service delivery is much more reliable than is the case with agency-provided services.⁶⁹⁸

New Jersey also has a Real Choice Systems Change grant to expand housing and personal assistance resource for people with disabilities. Activities include seed money for innovative housing projects, creation of a personal assistant registry, creation of a rapid response personal assistant backup system, and development of an educational program for case managers and other frontline staff on the benefits of consumer-directed service models.⁶⁹⁹

26. NEW MEXICO

(a) THE PLANNING PROCESS

In 2001, the New Mexico state senate requested, in Senate Memorial 33, that the state Department of Health and the Human Services Department "report progress on developing a state plan in response to the U.S. Supreme Court decision in Olmstead v. L.C." The Legislative Finance Committee held hearings during the 2001 interim to address Olmstead planning and recommended that the state's plan should include the following tasks:

1. Assessing people who are at risk for institutionalization.
2. Defining institutionalization and reviewing and measuring placement activities in institutions.
3. Developing the service infrastructure within the constraints of the personal care attendant and nursing aide shortage.
4. Finding accessible, affordable community-based housing.
5. Accessing transportation.
6. Identifying sources of funding within state budgets.⁷⁰⁰

In the next legislative session, the state senate again passed a resolution, Senate Joint Memorial 54, asking that a task force be created under the direction of the Governor's Committee on the Concerns of the Handicapped to develop a comprehensive, coordinated state plan in response to Olmstead and to report its findings to the Legislative Finance Committee in October 2002. The memorial also proposed that the Department of Health, the Human Services Department, other appropriate agencies, and persons with disabilities participate in the planning process.⁷⁰¹

State officials' response to the legislative measures was tepid at best. The director of a New Mexico Center for Independent Living reported that the Department of Health and the Human Services Department "held an Olmstead meeting where they simply stated what they were [already] doing."⁷⁰² In June 2002, an official of the Long Term Care Division of the New Mexico Department of Health reported that the department had decided that it "has no Olmstead exposure because the DOH was far ahead of Olmstead with respect to community-based care."⁷⁰³ She added that it was a "myth" that Olmstead required institutional closure, although at the same time she acknowledged that the state does not have adequate community services for persons with chronic mental illness, that funds for mental health services had been cut in the recent legislative session, and that "the infrastructure has declined over the last two years."⁷⁰⁴ She reported the Department of Health had agreed to work with the Governor's Committee on the Concerns of the Handicapped, but only on housing and transportation issues.⁷⁰⁵

(b) PROGRESS IN COMMUNITY INTEGRATION

New Mexico closed its two state developmental disabilities institutions in response to a class action lawsuit decided in 1990, Jackson v. Fort Stanton Hospital and Training School (D.N.M.). The last institutional resident moved to the community in 1998. The remaining persons with developmental disabilities in 2000 were 94 nursing facility residents and 16 residents of a private ICF/MR.⁷⁰⁶ At the end of 2001, 36 persons lived in New Mexico's state psychiatric institution at Las Vegas.⁷⁰⁷ With 6,364 nursing facility residents, New Mexico is in the mid-rank of the states in nursing facility use when expressed as a percentage of the total population age 65 and older; it ranks 11th among the states in the percentage of increase in the number of nursing facility residents from 1996 to 2001,⁷⁰⁸ and, not surprisingly, Medicaid spending on nursing facilities increased by 38 percent during that period.⁷⁰⁹ However, the number of beds remained steady.⁷¹⁰

(c) SYSTEMS CHANGE ACTIVITIES

The Human Services Department is developing a "global funding" Section 1115 waiver request to CMS.⁷¹¹ According to the Legislative Finance Committee, the waiver will "further diminish, if not eliminate, Medicaid's bias for providing long-term care services in institutional settings [and] ensure that long-term care services are provided in an integrated setting that meets the tenets of the Olmstead decision and the Americans with Disabilities Act."⁷¹² Under the global funding waiver, Medicaid reimbursement no longer will be tied to nursing facility beds or waiver slots, but will be attached to the consumer. Consumers of long-term care services will be able to move from one setting to another without having to go on a waiting list.⁷¹³

The waiver will enable the state to finance long-term care services using funds currently identified for Medicaid nursing facilities and home-based care services. Long-term care consumers will have access to preferred home- and community-based services, such as case management, nursing, assisted living, adult day care, therapies, in-home respite, emergency response, environmental modifications, home-delivered meals, personal care, family counseling, behavioral support, independent skills training, supported employment training, community reintegration support, and nursing facility services. The department anticipated that more long-term care consumers will be provided services because of the greater cost-effectiveness of home- and community-based services: $39,000 annually for nursing facility services compared with $17,000 for home- and community-based services.⁷¹⁴

In 2001, the Legislative Finance Committee convened hearings to address the costs and benefits of the administration's newly proposed long-term care global Medicaid waiver. The following concerns were expressed:

1. Because of the administration's proposal to cap funds, the program could increase the waiting list for community-based long-term care services and make the state vulnerable to future lawsuits.

2. New Mexico will not have sufficient services or protection for individuals who choose nursing home placement without sufficient new resources and additional home- and community-based provider development.

3. Neither the Department of Health Licensing and Certification Bureau nor the State Long-Term Care Ombudsman Program have sufficient oversight authority or staff to conduct surveys and additional provider visits.

4. New Mexico does not have adequate resources to accommodate even a minimal influx of people into community-based services.

5. New Mexico has serious resource limitations, including a lack of properly trained skilled and unskilled staff, a lack of paraprofessionals, and inadequate respite care for family caregivers.⁷¹⁵

Many of these obstacles appear to be a product of the long-standing direction of long-term care spending to nursing facilities. New Mexico's proposal to move to global funding appears to be a very promising approach, and it will be instructive to see its results.

Coupled with the Department of Health's disinterest in Olmstead planning is a much stronger interest in Medicaid reform, which appears to be driven by funding shortfalls and concern that the Medicaid program could face bankruptcy within a generation.⁷¹⁶ A Medicaid Reform Committee co-chaired by the same state senator who sponsored the Olmstead planning resolution began meeting in April 2002. Although the first meeting began with a proposal by the Medical Assistance Division to significantly reduce personal care services,⁷¹⁷ the advocate representatives effectively focused the rest of the Committee on the relationship between investment in community services and overall cost saving.⁷¹⁸ In August 2002, a Committee work group on Reconfiguring the Long-term Care Delivery System found that "New Mexico already has an underdeveloped LTC delivery system" and recommended that "increased efficiency, rather than cuts, be the focus of reform as this could lead to lower costs in the long run." The group recommended considering the options of expanding the Program of All-Inclusive Care for the Elderly (PACE); supporting family care giving; reducing or eliminating the institutional bias in publicly funded care programs; increasing community-based programs; expanding self-directed care options; expanding public transportation and housing availability; investing in recruitment and retention programs for home health care providers; and setting a time frame for submission of the 1115 global funding waiver.⁷¹⁹

The committee concluded that it needed more data, and more accurate data, on the cost of various long-term care services, the numbers of people using those services, how resources are being used, and staff retention.⁷²⁰

27. NORTH CAROLINA

In fall 2000, the North Carolina Department of Health and Human Services (NCHHS) began to develop an Olmstead plan by conducting four public meetings throughout the state at which participants were asked to discuss (1) how to identify people who could be supported in home- or community-based settings; (2) the services needed to support people in the community; (3) the regulatory or bureaucratic barriers that prevent or hinder community placement; and (4) the quality, monitoring, and reporting systems needed to oversee community services. About 900 people with disabilities, older adults, family members, professionals, and providers attended the meetings. After the meetings, HHS published an interim plan, Serving Persons with Disabilities in Appropriate Settings, on December 28, 2000.⁷²¹ A final plan has not yet been issued.⁷²²

Concurrently, NCHHS engaged in another planning process to reform long-term care in North Carolina, published an initial report at about the same time as the Olmstead plan,⁷²³ and, a year later, submitted State Plan 2001: Blueprint for Change to the Legislative Oversight Committee on Mental Health, Developmental Disabilities and Substance Abuse Services.⁷²⁴ Although the two planning processes were not formally integrated, goals for Olmstead implementation have been integrated into the State Strategic Business Plan for implementing Blueprint for Change.⁷²⁵ In January 2002, the assistant secretary of the Department for Long Term Care and Family Services was formally designated as the person responsible for long-term care planning, including Olmstead planning. The assistant secretary chairs a Long Term Care Cabinet, which includes the secretary, deputy secretary, and the directors of all divisions whose work affects long-term care services.⁷²⁶

The core of North Carolina's draft Olmstead plan is a process for identifying current institutional residents for potential community placement. Once they are identified, an individualized plan will be developed for each individual. The Office of Long Term Care will use the information generated by the individual planning process and an inventory of local resources to identify potential services gaps and specify the community services that need to be expanded. Service expansion will be addressed in the local plans to be developed by local entities as contemplated by the Blueprint for Change plan.⁷²⁷

The process for identifying institutional residents for community placement in the North Carolina plan is thoroughly inconsistent with Olmstead and with North Carolina's own extensive experience with implementation of a pre-Olmstead class action suit brought by persons with developmental disabilities who were institutionalized in state psychiatric facilities, Thomas S. v. Flaherty,⁷²⁸ in which the court of appeals affirmed an order to the state to implement the community placement recommendations made by individual residents' teams. Thomas S. was brought under the Fourteenth Amendment, not the Americans with Disabilities Act or Section 504 of the Rehabilitation Act; however, the court held that institutionalized persons with disabilities were entitled to services consistent with professional judgment. Where continued institutionalization was inconsistent with professional judgment, the individual was entitled to receive services in the community. In the course of Thomas S. implementation, the state arranged for independent evaluators to conduct comprehensive assessments of institutional residents to determine the services needed to remedy years of inappropriate institutionalization.⁷²⁹

In the assessment process developed by the Olmstead planners, institutionalized persons with developmental disabilities and nursing facility residents will first be asked whether the person "wishes to be considered for assessment for transition back into the community." Only after expressing a preference for community placement will the person be assessed. Only for persons with mental illness who are currently institutionalized or at risk of institutionalization will the entire population be assessed.⁷³⁰

For people with developmental disabilities, the state will conduct assessments of institutionalized persons in state mental retardation centers and private ICFs/MR "who have expressed a desire to live in a more integrated community setting and those parent/guardians and habilitation teams support this move."⁷³¹ In other words, only those persons who have affirmatively stated that they wish to move to the community and whose parents or guardians support the move will be assessed for community placement. This is inconsistent with Olmstead and with the post-Olmstead case law that requires only that the person not oppose community placement and that does not support delegating the decision whether to oppose community placement to parents and guardians.⁷³²

Similarly, for persons in nursing facilities, the state proposed to develop a brochure called Going Home that outlines the community services available to persons who choose to leave the institution. The brochure will be distributed through long-term care Ombudsmen and Nursing Home Community Advisory Committee members who will visit nursing facilities and talk with residents who have expressed an interest in living in their own homes and communities. Once a resident expresses a "clear desire to be assessed for transfer into a more integrated setting," the ombudsman or advisory committee member will notify the nursing facility social worker who will be responsible for making a referral to the regional Division of Vocational Rehabilitation Independent Living Office, which will then evaluate the resident "to determine if the person is an appropriate candidate for transition."⁷³³ Again, this process places far too heavy a burden on individual nursing facility residents to make their preference for community placement known to ombudsmen and committee members, whose visits may be too sporadic and controlled by facility staff to effectively identify people who are interested in moving. Obligating a person with significant disabilities to express a "clear desire" for community placement is unrealistic and at the opposite pole from the Olmstead "not opposed by the affected individual" standard.

The state engaged staff from the Center for the Study of Development and Learning of the University of North Carolina at Chapel Hill to interview residents to determine their preferences for community placement or continued institutionalization. By September 2002, data from the interviews, called Client Preference Interviews, were to be compiled, analyzed, and shared with the state.⁷³⁴ As might have been predicted, the number of persons who have asked to be considered for assessment is relatively small. UNC staff reported that in its initial interviews of residents of mental retardation centers and psychiatric hospitals, about half the residents said they wanted to leave, whereas a fourth said they would like to stay in their respective institutions and another fourth said they were "conflicted." The evaluators reported that "in many cases, what an individual wants does not match with what a guardian thinks an individual wants."⁷³⁵

More recent results of the Client Preference Interviews reveal the barriers to community placement presented by the "clear desire" standard, especially for persons with developmental disabilities. Of 1,786 persons interviewed in mental retardation centers, only between 5 percent and 8 percent expressed a "clear desire" to return to the community. The percentage of residents of mental health facilities who expressed a clear desire to return ranged from 17 percent at the North Carolina Special Care Center to 70 percent at Dix Hospital (an institution originally slated for closure in 2002).⁷³⁶

According to the state's timetable for Olmstead implementation, it should now have consistent procedures for identifying and prioritizing institutional residents for discharge. By April 1, 2003, the state plans to have "out-placement teams" in each state institution, and by July 1, 2003, it plans to have a mechanism for tracking individuals leaving state institutions to ensure continuity of care. By July 1, 2007, it is expected that the number of certified beds in all state-operated facilities will have been reduced to "target levels."⁷³⁷

The financing mechanisms originally contemplated for Olmstead implementation were creative and promising. The Division of Mental Health, Developmental Disabilities and Substance Abuse Services (MH/DD/SAS) planned to provide "bridge financing" for people leaving the institution for the community through two mechanisms: a MH/DD/SAS Trust Fund and Realignment/Community Capacity Reinvestment. The Trust Fund is a fund designated by the legislature for start-up and short-term operational costs of developing community services, housing, rental deposits, equipment purchases, and other resources for people leaving institutions in the interim before savings are realized through realignment of institutional resources. Realignment/Community Capacity Reinvestment means simply that as individuals leave state institutions, the financing of their community services will come directly from the planned redirection of the resources that become available as a result of closing institutional beds.⁷³⁸

In the 2001-2002 budget, the legislature, in S.B. 1005, set aside $47.5 million for the Trust Fund and stated that one of the purposes of the fund was to facilitate the state's compliance with Olmstead. However, because of the state budget crisis, the governor by executive action placed $37.5 million from the Trust Fund in escrow, leaving only $12 million available for bridge funding. The MH/DD/SAS developed a scaled-down utilization plan for Trust Fund resources, which, as finally approved, provided funding to develop community resources for people leaving a children's mental health facility and a psychiatric hospital unit slated for closure; funding to support transition of people from state mental retardation institutions to the community; funding for transition planning; and, in an especially promising use of bridge funding, $3.6 million to leverage the development of community housing for people with mental illness or other disabilities. The MH/DD/SAS reported that it has designated a planning team to work with the private sector to develop housing leverage plans.⁷³⁹ Not all the resources from the Trust Fund were used to develop community services, however; some were set aside for the development of specialized services at the institutions.⁷⁴⁰

In 2002, the Senate set aside $50 million for the Trust Fund. A budget amendment provided that all proceeds from the sale of the Central North Carolina School for the Deaf would be deposited in the Trust Fund.⁷⁴¹

(b) PROGRESS IN COMMUNITY INTEGRATION

North Carolina's institutional populations are large, and during the past 10 years they have decreased very slowly or grown. Despite Thomas S. implementation, North Carolina still houses almost 3,000 persons with developmental disabilities in large congregate settings, primarily state institutions; since 1990, an average of only 57 persons a year have moved to the community.⁷⁴² If the state continues to use its present method for identifying persons for community placement, this pattern is unlikely to change. In addition, North Carolina has a large waiting list for developmental disability services-more than 6,000 persons in 1999.⁷⁴³

At the end of 2001, 626 of approximately 3,500 persons institutionalized in state psychiatric facilities had been there for more than a year.⁷⁴⁴ With 37,106 nursing facility residents in 2001, North Carolina was in the middle rank of states in nursing facility use, measured as a proportion of the state's overall population age 65 and older. From 1996 to 2001, however, nursing facility beds increased by 7.6 percent, the ninth largest increase in the nation during that period, and the number of residents also grew, though by only 1.6 percent.⁷⁴⁵

(c) SYSTEM CHANGE ACTIVITIES

The NCHHS plan for reforming the long-term Blueprint for Change calls for reorganizing the department from its present divisional model of "essentially freestanding, single-disability silos" that operate independently of one another to a cross-disability framework that is intended to foster the development of common approaches to similar issues. The Area Agencies that currently provide services will be reorganized into Local Management Entities (LMEs) that will develop local business plans for development of services and manage a network of providers. To receive public funds, the provider must be a member of the network. Access to the reformed system at the local level will be through a "uniform portal."⁷⁴⁶ Although implementation of the new system has barely begun, it is a promising design that has the potential to enhance and integrate planning and development of community services at the local level and divert persons of all disabilities from institutions.

28. NORTH DAKOTA

(a) THE PLANNING PROCESS

After HHS issued its first letter to state Medicaid directors, the director of the North Dakota Department of Human Services (DHS) appointed an internal work group to review the Olmstead decision and recommend further action. The group was composed of representatives of the Divisions of Aging Services, Children and Family Services, Disability Services-Developmental Disabilities Unit, Mental Health Services, the state Developmental Center, the state psychiatric hospital, the regional human service directors, and the Legal Advisory Unit. People with disabilities and advocates were not included in the work group. In August 2000, the group held four regional information meetings with consumers, families, advocates, and providers via teleconference to elicit their input. Following the information meetings, a broad coalition of disability organizations, including People First of North Dakota, the Mental Health Association, the AARP, three North Dakota CILs, The Arc, and the state Protection and Advocacy agency, urged the North Dakota DHS to develop an effective plan with full participation of stakeholders with disabilities.⁷⁴⁷ The coalition of advocates established their own Olmstead Workgroup to demonstrate a unified position on Olmstead implementation.⁷⁴⁸

On November 6, 2000, the work group issued a White Paper, which was not intended to be a plan but an analysis of the issues and a brief set of recommendations for further action.⁷⁴⁹ Its recommendations included the development of a comprehensive state plan by a commission appointed by the governor and composed of representatives from the governor's office, legislators, family members, consumers, advocates, providers, and state agency directors. The work group also recommended that DHS develop a pre-assessment screening process to be completed before a person's admission to a nursing facility and continue to support the development of alternatives to nursing facilities.

On August 7, 2001, Governor Hoeven issued an executive order establishing an Olmstead Commission "to develop a plan to implement the Olmstead decision by providing appropriate community-based placement for individuals with disabilities, consistent with the needs and available resources of the State."⁷⁵⁰ The commission had already received a 36-month planning grant from HHS. The governor asked the commission to submit its report and recommendations in time for the 2003 Legislative Assembly. The executive order required that membership of the commission include representatives of all the disability organizations that had asked to participate in the planning group except People First of North Dakota.⁷⁵¹ However, when the members of the group finally were appointed in December 2001, the only advocates among the membership were the executive directors of North Dakota Protection and Advocacy, the North Dakota Mental Health Association, and the AARP-North Dakota.⁷⁵²

The executive order also required that a representative of "the public at large" be appointed to the commission. At least three of the persons actually appointed seem to fit this description: a manager from the Altru Health Foundation, a college student, and a schoolteacher.⁷⁵³

In March 2002, the Commission held focus group sessions across the state to collect information on consumers' perceptions of the obstacles to accessing services, the length of the wait for services, the improvements needs in existing services, and "how an institution is defined."⁷⁵⁴ The issues most commonly identified included "funding following the person"; eliminating the institutional bias; recipient liability; increased funding for home and community services; need for a "full continuum" of service levels in housing; lack of foster homes; shortage of housing and lack of funding for home modifications; absence of a single point of entry; lack of data; provider staffing shortages and low wages; and lack of community-based services for elderly persons and persons with mental illness. Transportation was judged inadequate in every community. Asked to define an institution, the participants identified size, restrictions on choice, and lack of community integration as the most common characteristics of an institution.⁷⁵⁵

(b) PROGRESS IN COMMUNITY INTEGRATION

North Dakota advocates reported at an ILRU training session in November 2001, "The state still does not believe there is a list of people who want to leave institutional settings."⁷⁵⁶ That certainly rings true in developmental disabilities. As the result of a lawsuit brought and won by The Arc of North Dakota,⁷⁵⁷ the number of persons with developmental disabilities institutionalized in state facilities fell dramatically, from more than 1,200 in the 1960s to 149 in 2000, accompanied by an increase in public spending on developmental disability services that was equally dramatic.⁷⁵⁸ North Dakota was an early leader in the development of supported living services, and today the majority of persons who were placed in the community under the court orders receive services in their own homes or apartments. However, unlike other small states that have closed their developmental disabilities institutions in response to litigation, North Dakota kept the Grafton institution open, and, after the court relinquished jurisdiction in 1990, the pace of deinstitutionalization virtually came to a halt. The population of Grafton has hovered at around 150, the number of persons in nursing facilities has remained steady at around 190, and the number of persons in large private institutions has doubled to 109 in 2000.⁷⁵⁹ The state's position is that the role of the developmental center is that of a "safety net" when appropriate community services are not available.⁷⁶⁰

According to the North Dakota DHS, the average daily census of the North Dakota State Hospital was about 160 in 2000.⁷⁶¹ DHS attributes significant decline in the institutional population to a state statute enacted during the 1989-1991 biennium requiring all voluntary admissions to the State Hospital to be prescreened at one of the regional service centers, with the result that more people were diverted to community services, the number of hospital residents fell from 500 to 275, and 7 of 17 units at the hospital were closed. By 1999, two other units, a chemical dependency treatment unit and a geropsychiatric unit, were also closed because of the increased availability of community services.⁷⁶²

About 1,720 children in the child welfare and children's mental health systems are placed outside their homes in any given year; according to the North Dakota DHS, about 35 percent of these children are placed in residential facilities rather than with families. The average length of stay in these facilities is short, however, ranging from 4.2 to 10.4 months in 2000.⁷⁶³ About 35 children and youth are placed in residences out of state.⁷⁶⁴

During the first half of the 1990s, North Dakota had the nation's highest percentage of elders placed in nursing facilities, and the state maintained a number of nursing facility beds per thousand persons that was 50 percent higher than the national average. During the first half of the 1990s, Medicaid expenditures on nursing facilities increased by almost 10 percent per year. In response to the pattern of runaway utilization, the legislature, the governor, and the DHS convened a Task Force on Long Term Care Planning that met during the interim between the last three biennial legislative sessions to consider ways to promote alternatives to nursing facility use. By 2000, however, the impact of these efforts was relatively modest: a reduction of 2.7 percent in the number of nursing facility beds, a reduction of 6.3 percent in the number of occupied beds, and a reduction of 11.8 percent in the number of beds occupied by Medicaid beneficiaries.⁷⁶⁵ Nursing facility expenditures continued to grow, however, and in the 1999-2001 biennium, DHS funds allocated to nursing facilities increased by 18.6 percent, primarily because of salary and benefit compensation for staff and rebasing of the upper payment limits. In the 2001-2003 DHS budget, nursing facility expenditures made up 21.4 percent, whereas home- and community-based services for elders and people with physical disabilities made up only 2.5 percent. Another 11.7 percent was earmarked for community services for people with developmental disabilities.⁷⁶⁶

(c) SYSTEMS CHANGE ACTIVITIES

In September 2002, North Dakota received a Real Choices Systems Change grant to evaluate and help implement methods of enhancing the effective delivery of home- and community-based services for people with disabilities in urban and rural counties. Of interest is that the grant was obtained by DHS on behalf of the Governor's Olmstead Commission and will actually be administered by the commission.

The long-term care planning effort to address overuse of nursing facilities referred to above predates the formation of the Governor's Olmstead Commission. In 2000, the Task Force on Long Term Care recommended that a targeted case management option be implemented to ensure that persons who were eligible for long-term care understood the options available to them before making a final decision about where to receive services. The task force also recommended the establishment of a rent subsidy program and a pre-admission assessment process before admission to a nursing facility.⁷⁶⁷ A state law enacted in 2001, House Bill 1196, which established a revolving loan fund for long-term care facilities, also authorized DHS to pay incentives of up to $15,000 per bed to nursing facility operators to reduce capacity. By September 2002, the DHS had paid $3.2 million to nursing facilities to eliminate only 265 beds.⁷⁶⁸

29. OHIO

(a) THE PLANNING PROCESS

Ohio's Olmstead plan is widely regarded as a model for other states. The planning effort began in June 2000, when Governor Taft instructed his Office of Budget and Management to coordinate a review of the state's services systems with the Departments of Job and Family Services, Mental Health, Mental Retardation and Developmental Disabilities, Health, Aging, and Alcohol and Drug Addiction Services. The resulting plan was published on February 28, 2001. The recommendations in the plan are embedded in a vision of increased consumer self-determination and control and include the following:

1. Change the reimbursement system for institutional care designed to slow the growth of institutional costs and allow investment of an additional $145 million in community services.
2. Shift funding to community services by systematically realigning financing, statutes, regulations, local infrastructure, and the support of public agencies.
3. Work with the National Governor's Association and other national organizations to overcome federal policy constraints.
4. Address the health care workforce shortage by adopting "best practices" to increase job satisfaction.
5. Remove policy barriers in Ohio that inhibit people with disabilities from achieving independence and personal responsibility.⁷⁶⁹

The Ohio plan addresses most of the components of Olmstead planning recommended by HHS. It identifies, although in broad and general terms, the numbers of persons in institutions (except for nursing facilities) and waiting for services and considers the extent to which existing programs can serve as a framework for developing services and the level of agreement among stakeholders.⁷⁷⁰ The plan identifies strategies for system change that will enable more people with disabilities to be supported in the community and recommends changes that will enable people with disabilities to exercise informed choice.⁷⁷¹

Some of the consumer input into development of the plan came from preexisting committees in the various departments: the MR/DD Vision Committee, the Department of Mental Health Building Our Future Together initiative, and the Department of Aging Summit on Health Care Workforce Shortage.⁷⁷² In addition, the Department of Job and Family Services, the Department of Aging, and the Ohio State Independent Living Council organized 10 forums across the state to gather input.⁷⁷³ The plan addresses needed improvements in data systems⁷⁷⁴ and the challenges the system poses to serving people in the most integrated setting.⁷⁷⁵ It acknowledges candidly that the support people with disabilities need to live in the community is frequently not available and that entire state systems must be redesigned to improve the adequacy and availability of support.⁷⁷⁶ It addresses the needs of people who are at risk of unjustified institutionalization because of lack of support in the community, including those with and without informal caregivers, and examines the services that will enable them to move from waiting lists.⁷⁷⁷ The plan looks critically at the effectiveness of the current system and the real-world outcomes of current supports and services.⁷⁷⁸

The plan looks squarely at funding. It includes specific provisions in the Governor's Executive Budget for 2002-2003 to expand home- and community-based waiver programs, including 2,300 new waiver slots in FY 2002; 2,600 new waiver slots in FY 2003 for elders, persons with physical disabilities, and persons with developmental disabilities; and funding for transition costs to enable 75 persons to leave nursing facilities in 2002 and 125 in 2003. It calls for development of a managed care waiver for persons with mental illness. Of great interest are the measures in the Governor's Budget designed to reduce spending on nursing facilities and remove incentives to building more nursing facility beds, including setting separate rates for Medicaid- and Medicare-supported residents; changing the reimbursement formula to one that divides nursing facility rates by all beds rather than basing the rate on occupied beds; abandoning the payment of bonuses to for-profit providers on the basis of the value of their assets; abandoning the practice of bailing out bankrupt facilities; and limiting reimbursement for depreciation. Even with these changes, nursing facility expenditures would still increase because of automatic increases of 9.6 percent and 7.5 percent in FY 2002 and 2003, respectively, that are guaranteed by state law.⁷⁷⁹ The plan does not address how this requirement, which resulted in an automatic increase in nursing facility spending of more than half a billion dollars in FY 2002 and 2003,⁷⁸⁰ will be changed.

Despite its strengths, the plan does not address the pace of transition from institutions to the community or off waiting lists, does not set timelines for movement, and does not look at the adequacy of the state's current system of assessing institutional residents for community placement (and refers to the results of assessments only for persons with mental illness), nor does it ensure that the state will respond to assessment findings in a timely manner. Although the plan speaks the language of consumer direction and control, it stops short of calling for system change that will enable funding to follow the person.

(b) PROGRESS IN COMMUNITY INTEGRATION

Ohio's institutional populations are some of the largest in the nation. In 2000, nearly 8,000 persons with developmental disabilities live in large congregate facilities, including 2,430 persons in nursing facilities, 1,990 in state institutions, and 3,374 in large private ICFs/MR.⁷⁸¹ Of the 412 persons in state psychiatric institutions who had been there for more than a year,⁷⁸² the Ohio Access plan reports that preliminary assessments show that more than 100 could be served in community settings if proper support were made available. In addition, about 300 persons with mental illness living in adult care facilities could be served in a community-based setting if intensive services and housing support were available.⁷⁸³ The plan concluded that services for people with mental illness were seriously deficient and that about 3,700 persons, or one-third of the consumers of community mental health services, were not receiving adequate services on the basis of frequency of hospitalization and crisis episodes.⁷⁸⁴ In 2001, 80,930 Ohioans lived in nursing facilities, a decrease of 2.6 percent since 1996, but still enough to make Ohio the ninth state in the nation in nursing facility use when measured as a percentage of the total population age 65 or older. During this period, however, Ohio reduced the supply of nursing facility beds by 12 percent, one of the largest rates of decrease in the nation.⁷⁸⁵

(c) SYSTEMS CHANGE ACTIVITIES

Most of the real work of implementation of the Ohio Access plan has occurred in the MR/DD Medicaid Redesign Project. Although redesign of MR/DD services was one of the recommendations of the Ohio Access plan, the impetus for MR/DD system redesign came not from Olmstead, but from a review by CMS of Ohio's Residential Facility Waiver, and the redesign project predated and developed more or less independently of the Olmstead planning project. The review found that Ohio's MR/DD service system did not comply with the Medicaid requirements of freedom of choice of provider, comparability of services, and being sufficiently statewide.⁷⁸⁶ Faced with a lack of new funding to support the necessary changes, state officials took on the challenge of serious, systemic change in the structure and financing of Ohio's MR/DD services. A budget bill enacted in 2001 outlined the framework for systems change and established an Executive Branch Committee (EBC) to oversee the redesign consisting of representatives of the governor's office, the Department of Job and Family Services, the Department of MR/DD, the Office of Budget and Management, The Arc of Ohio, the Ohio Association of County Boards of MR/DD, Ohio Superintendents of the County Boards of MR/DD, provider representatives, and a representative of persons with MR/DD.⁷⁸⁷

The basic strategy outlined by the bill was, first, to quickly free up funds by refinancing services that were funded 100 percent by local dollars to capture the federal Medicaid match. To do this, the state submitted a low-cost "basic" waiver with a cap of $5,000 per person to provide federal matching funds for people living at home with their families. It also expanded its Individual Options waiver, which complied with Medicaid requirements, to serve persons who were receiving state-funded supported living services. The freed-up funds were to be used for infrastructure, additional federal match, and expansion of services. After six months of "frontloading," people enrolled in the Residential Facility Waiver and people in waiting list priority categories would transition to a series of new or amended waivers that would comply with Medicaid requirements. Each waiver would contain an individual cost cap on services so that persons with different levels of need would be served in different waivers (for example, the "cap" in the Basic waiver would be one dollar less than the "floor" in the Individual Options waiver), with provision for easy transition between waivers for persons whose needs might change. County boards that financed MR/DD services with local funds would be designated as Medicaid local administrative authorities with responsibility to ensure that Medicaid requirements, including choice of provider, are met.⁷⁸⁸ Conversion to the new system began in July 2002 and is expected to take about a year.⁷⁸⁹

As part of the redesign project, more than a dozen work groups with stakeholder representation were established with specialized tasks in different aspects of implementation. In March 2002, the director of the Department of MR/DD acknowledged that the relationship between the work groups and the department staff had been problematic: "As valuable as the work group process has been, we all acknowledge that the connection between policymaking and implementation needs to be strengthened." The relationship between the work groups and the EBC established in House Bill 94 has not been simple to manage. Members of the EBC had worked together intensively on crafting the provisions of this omnibus legislation and therefore had a rich understanding of what was intended and why. One result was that the EBC was not totally satisfied with some of the approaches the work groups took, resulting in substantial revision of work products. Naturally enough, staff and the outside parties who donated their time and energies to the work groups expressed frustration over the process.⁷⁹⁰

The EBC's resolution of the problem was to centralize responsibility for policymaking in its own subcommittees. The existing work groups' role was reduced to carrying out specific assignments that might be made from time to time by an Executive Branch subcommittee.⁷⁹¹

Conspicuously absent from the system redesign project is any consideration of how funding might be redirected from MR/DD institutions to community services. The director of the Department of MR/DD testified in May 2002 that the department had begun a pilot project to assist "individuals who have a desire to leave the centers" and move to a home- and community-based setting. In other states, offering community placement only to those persons with developmental disabilities who express a desire to leave the institution has left the overwhelming number of institutional residents behind. It was apparent from the director's testimony that the state does not intend significant reduction of institutional populations but instead will rely on increasing efficiency to contain costs.⁷⁹²

However, by early 2003, state budget realities and the high cost of services at the state developmental centers-an average annual cost of more than $120,000 per person-led the administration of Governor Bob Taft to propose sufficient community placement of institutional residents to enable the state to close one or two of Ohio's 12 state-operated developmental disabilities institutions. Governor Taft announced that residents of the institutions to be closed would be given choices about where they want to live, which could include the community or another state institution. However, the administration's expectation plainly seems to be that most residents of the institutions selected for closure will move to the community.⁷⁹³

The obstacles to reducing spending on nursing facilities in state law have been a particular challenge in Ohio. After the Ohio Access plan was published, a group of disability advocates formed to work with state agencies to seek Systems Change grants from CMS. The Ohio Developmental Disabilities Council and the Statewide Independent Living Council used the group as the beginning of a cross-disability/aging Olmstead Task Force.⁷⁹⁴ In a meeting with the task force in March 2002, the executive assistant to the governor made clear that other demands on Medicaid funds, including the statutory formula that assigns 42.5 percent of Medicaid funds to nursing facilities and other long-term care facilities, will make it difficult for the state to expand existing Medicaid waivers or add new programs, such as the Medicaid buy-in.⁷⁹⁵

By summer 2002, some of the measures to reduce incentives for building unneeded nursing facility beds that were proposed by the governor and included in the Ohio Access plan in 2001 were still being considered by a Nursing Facility Reimbursement Council, made up of legislators, agency administrators, and representatives of the nursing facility industry. In a hearing before the council on July 16, 2002, the director of the state Medicaid agency made the case for change, pointing out that 14 percent of nursing facility beds were unoccupied, that the present system increases per diem payments as occupancy falls, and that other aspects of the reimbursement system inflate payments. The legislators expressed concern with downsizing nursing capacity, and one suggested that empty nursing facility beds should be made available to other populations, such as people with developmental disabilities and mental illness.⁷⁹⁶ An advocate who attended the meeting reported that the governor's executive assistant pointed out the desirability of having 20 or so members of the Olmstead Task Force in the audience for the hearings.

Ohio has an administrative rule providing that a third of the proceeds from the collection of franchise permit fees and penalties paid by nursing facilities and hospitals are to be deposited in a "home and community-based services for the aged fund" and used to fund programs for Medicaid beneficiaries, including the PASSPORT waiver for persons older than 60 who are at risk of nursing facility placement. However, in an amendment that became effective on September 30, 2002, the percentage of the fees paid into the home- and community-based services fund was reduced to 23 percent for fiscal years 2003 through 2005.⁷⁹⁷

30. OKLAHOMA

(a) THE PLANNING PROCESS

In February 2000, the Oklahoma Health Care Authority (OHCA) began a series of public meetings and work group meetings to obtain stakeholders' views of the service delivery system and identify where "reasonable modifications to existing programs" were needed and could be made. Stakeholders who attended the meetings included the Departments of Human Services/Developmental Services Division, Mental Health and Substance Abuse Services, and Rehabilitation Services; the Oklahoma Brain Injury Association; Tulsa Arc; the UAP; the Oklahoma Developmental Disability Council; the Oklahoma Disability Law Center; and the Oklahoma Nursing Home Association. An OCR representative attended the public meetings.⁷⁹⁸

According to OHCA, discussions at the meetings led to "reasonable modifications" to the state's Medicaid program. These changes included an amendment to the state's Aged/Disabled ("Advantage") waiver to include services for adults with developmental disabilities without cognitive disabilities, limited by availability of funding; reduction of the waiting list for MR/DD waiver services by 1,039 out of 2,500; expansion of Medicaid coverage of Durable Medical Equipment with the help of Oklahoma's assistive technology program to provide more comprehensive coverage that meets CMS requirements; increases in the wages of direct support professionals by a little less than $1.50 an hour; and expansion in a transportation system to transport Medicaid recipients to medically necessary services. Despite these changes, as of February 2001, 2,964 Oklahomans were counted on the MR/DD waiting list.⁷⁹⁹

Following the first two Olmstead public meetings, an Olmstead Work Group began meeting monthly at OHCA. OHCA developed a list of "invitees" in concert with the Developmental Disabilities Council, the Division of Developmental Disabilities Services, and the Aging Services Division. Constituencies added to the group included NAMI, the Chicksaw Nation, the Oklahoma Mental Health Consumer Council, ABLE Tech (the assistive technology program), and an independent living center. The work group divided into five committees to address five of the principles set forth in the HHS letter to state Medicaid directors of January 2000. The groups respectively addressed the state of the current system, transition of qualified persons to community-based settings, assessments to determine how community living is possible, evaluation of the adequacy of current assessments, and persons at risk of institutionalization.⁸⁰⁰ The subcommittee members did not attempt to determine whether fundamental alteration in existing programs was necessary (or what would constitute a fundamental alteration), nor did they address funding levels or funding strategies.

The Summary Report of the Working Group, even in its fourth draft, is little more than a "plan to plan." Each of the subcommittees recommended, in essence, that planning continue (or begin in earnest), that relevant data on existing services be collected and analyzed, that people who want to move to community be identified and assessed, that quality assurance systems be developed, that a preplacement screening process be developed, and that incentives for deinstitutionalization be created. One of the subcommittees did recommend that the state contract with independent community-based organizations to identify and assist with the transition of people in institutions who want to live in the community; another recommended that the state set targets for completing assessments of institutional residents, such as 20 percent per month.⁸⁰¹ Other recommendations included pursuit of additional waivers for underserved populations, such as people with autism, mental illness, noncognitive disabilities, and brain injury; a true analysis of the costs and benefits of serving people in state institutions as compared with the community; sustained and regular input in policy and planning decisions from consumers and other stakeholders; and creation of a consumer-friendly single entry point.⁸⁰²

But it was clear to the consumers and advocates in the working group that the planning process had progressed as far as it could go without a much more substantial commitment from the state. The working group concluded the following:

[S]tates which have been the most successful in their Olmstead planning are those that have both the support of their executive body and a mandate to all state agencies, not just the Medicaid agency, to fully participate.

Advocates next turned to the legislature. A state senator introduced a bill, S.B. 1512, to create a Strategic Planning Committee on the Olmstead Decision.⁸⁰³ Even before the governor signed the bill on May 30, 2002, most of the stakeholder participants in the working group had been appointed to the new planning committee,⁸⁰⁴ which includes work groups on The Dollar Follows the Individual, Diversion, Community Supports, Quality Assurance, and Budget and Finance.

(b) PROGRESS IN COMMUNITY INTEGRATION

In the 1980s, Oklahoma was last in the nation in community services for persons with developmental disabilities and was saddled with a network of powerful private institutional providers, the legacy of an era when children entered the state institution at age 6 and were transferred to nursing facilities (some of them later converted to private ICFs/MR) at age 18. A successful lawsuit, Homeward Bound v. The Hissom Memorial Center, led to the closure of one of the state's three developmental disabilities institutions, the placement of all Hissom residents in the community, and the creation of state-of-the-art community services in the Tulsa area. The population of Oklahoma's developmental disabilities institutions has continued to decline since Hissom closed in 1994, but the decline has slowed in the past several years. In 2000, many more Oklahomans lived in private ICFs/MR (1,465) and nursing facilities (1,210) than in state institutions (407); moreover, movement from the private facilities slowed in the late 1990s and their population is now increasing again.⁸⁰⁵

In 2001, Oklahoma's nursing facility population of 22,640 made it 10th in the nation in nursing facility use when expressed as a percentage of the state's total population age 65 and older. Although the nursing facility population decreased by 11.5 percent from 1996 to 2001, one of the most significant declines in the nation during that period, decrease in the number of beds was only 2.4 percent, and Medicaid spending on nursing facilities actually increased by 53 percent.⁸⁰⁶ The population of Oklahoma's state psychiatric institutions is relatively small in comparison, but about half the population has lived there for more than a year.⁸⁰⁷

31. OREGON

(a) THE PLANNING PROCESS

The strongest impetus for Olmstead planning in Oregon has come from mental health advocates. In 2000, the Mental Health Planning and Management Advisory Council of the Oregon Mental Health and Developmental Disability Services Division and several mental health advocacy organizations urged the division to begin planning for the development of community supports for persons with mental illness who were in institutions or at risk of being institutionalized.⁸⁰⁸ Initially, administrators in the division were reluctant to commit to the planning process because they had heard from the National Association of State Mental Health Program Directors that a plan would increase the potential for lawsuits.⁸⁰⁹ On August 10, 2001, the Advisory Council (a group composed largely of consumers and other stakeholders) formally moved that the division permit the planning group to begin planning in earnest,⁸¹⁰ secured the consent of the division administrator,⁸¹¹ and, on October 25, 2000, the administrator of the division convened work groups (later combined into a single Olmstead Workgroup) "to assess the extent to which persons in Oregon's state hospitals who had been determined to be ready for placement by their Treatment Teams had not yet transitioned to the community and to make recommendations regarding costs, timelines and processes."⁸¹² The charge to the Olmstead Workgroup included preparing a list of persons for whom individualized community discharge plans should be developed; assessing community placement costs and timelines for their discharge; proposing a method for ongoing review of patients for discharge readiness and maintenance of a waiting list with estimated placement costs for each person to be placed; and preparing an Olmstead Plan with timelines for discharge and projection of funding and program development needed for each person.⁸¹³

On December 19, 2000, as the Olmstead Workgroup was beginning its work, the Oregon Advocacy Center, the state's protection and advocacy organization, filed an Olmstead lawsuit, Miranda B. v. Kitzhaber⁸¹⁴ on behalf of 10 named plaintiffs and a class of approximately 100 residents of state psychiatric hospitals who had been recommended for community placement but remained institutionalized because of the lack of community services. The Olmstead planning process was put on hold for a time because of the lawsuit,⁸¹⁵ but evidently resumed after the state filed a motion to dismiss on Eleventh Amendment grounds, which virtually guaranteed that the case would not move forward until the district court had decided the motion and the Court of Appeals for the Ninth Circuit had disposed of an interlocutory appeal.

The complaint in Miranda B. states that people with mental illness are placed at costly private hospitals while awaiting an opening at the state hospital and that, because of a backlog, they frequently are forced to live in medical and surgical units while awaiting placement.⁸¹⁶ The court denied the defendants' motion to dismiss, but the defendants, as might be predicted, filed an interlocutory appeal on the ground of Eleventh Amendment immunity. The appeal is currently pending.⁸¹⁷

With Miranda B. on appeal, the work group published a draft plan on August 21, 2001. They found that a total of 70 adults at the two state psychiatric hospitals had been recommended for discharge by their interdisciplinary teams and 48 of them had been waiting to move for at least three months.⁸¹⁸ Most of these persons had disabilities in addition to mental illness, including acquired brain injury, developmental disabilities, or histories of substance abuse, trauma, or sexual offending. The work group concluded that even if these persons were able to return to the community eventually, they would be at continued risk of reinstitutionalization because of their multiple and complex needs and the lack of services needed to support them in the community.⁸¹⁹

The work group next identified the services needed by the 48 persons recommended for community placement, including residential treatment facilities, adult foster homes, supported housing, supported employment, and case management. Cost projections were developed on the basis of the following scenarios: (1) all-new development of facility-based services; (2) development limited to smaller homes, supported housing, and permanent, affordable housing, together with "judicious use" of vacancies in existing residential treatment programs. The work group recommended the second alternative, but noted that although the second alternative is more cost-effective and consistent with Olmstead, it would require more training of case managers, county residential coordinators, and service providers to work with consumers to develop and carry out more individualized plans in integrated residential settings.⁸²⁰ Cost projections for the recommended alternative included rent subsidy funds to enable consumers to afford housing until Section 8 vouchers become available.⁸²¹ The work group analyzed the process for transitioning consumers from the hospitals to community settings and recommended changes aimed at tracking people waiting for placement and the length of time they remained waiting and ensuring that people recommended for placement actually do move to the community.⁸²²

Finally, the work group made 38 specific recommendations, of which the following are some of the most significant:

1. Develop a comprehensive, effectively working plan to provide services to people of any age with psychiatric disabilities in more integrated, community-based settings.
2. Increase consumer and stakeholder participation on the work group.
3. Use the County Biennial Plans to identify programs and providers interested in developing additional resources.
4. Review Medicaid and other funding sources to identify potential sources of additional funds.
5. Give priority to developing smaller, more community-integrated residential settings.
6. Implement specific changes in the transition process to focus on identifying and developing the services needed for persons with more complex needs who are difficult to place.
7. Train providers and service coordinators in person-centered planning, cultural values, choice, and self-determination.
8. Develop additional peer-operated programs and support self-advocacy.
9. Seek funding to develop support brokerage agencies to assist consumers to recruit, supervise, and manage their own Personal Care Attendant services.

Of note is the work group recommendation that "[s]pecial transition work should be done with [Recommended for Placement] individuals who refuse all placements or show a special fear of leaving the state hospital" because the work group recognizes that the right to community living is not limited to people who affirmatively request community placement but should be extended to anyone who does not oppose community placement.⁸²³

In 2002, the work group report was approved and adopted by the division. Despite its limitation to persons with mental illness and the small number of persons who may ultimately benefit from community integration under the plan, the Oregon Olmstead Workgroup's report is a model Olmstead plan in many significant respects. It identifies the people recommended for placement with specificity and the services they will need in the community, examines the adequacy of the discharge process, considers the adequacy of existing services and the changes needed to make those services responsive to the needs of consumers, and projects the costs that will be associated with transition.

Concurrent with the work of the Olmstead Workgroup, a much more comprehensive effort to develop a blueprint for redesign of Oregon's mental health system was carried out by a task force appointed by Governor Kitzhaber in January 2000, the Mental Health Alignment Work Group. The impetus for the formation of the Alignment Work Group was the recognition of the "hydraulic" impact of lack of adequate mental illness services on all parts of the human resource, education, and workforce systems, as manifested by the high percentage (ranging from 40 to 75 percent) of clients of various state agencies with untreated mental illness, together with the acknowledgment that lack of access to services was compounded by fragmentation and the lack of a real mental health system.⁸²⁴

10. Membership of the Alignment Work Group was extremely broad and included representation from the governor's office; the Departments of Education, Corrections, Human Services, Housing and Community Services, Justice, and Budget and Management; the Oregon Youth Authority; the Oregon Commission on Youth and Families; the Oregon Disabilities Commission; the Association of Oregon Counties; the Oregon State Police; the Sheriffs' Association; consumers and families; legislators; judges; community providers; local school districts; physicians; psychiatrists; local mental health directors; tribal governments; and housing providers, with some overlap with the membership of the Olmstead Work Group.⁸²⁵ The Alignment Work Group met two or three days a month from February through December 2002, and in January 2001 published a report that included the following recommendations:

1. Develop local biennial blueprint plans for multisystem teams to coordinate and deliver services for children, families, and adults.

2. Establish equal benefits for mental health and physical health (parity).

3. Provide public mental health funds through a block grant and encourage the local Mental Health Authority to enter into "blended funding" agreements with state and providers.

4. Address the connection between law enforcement and mental health by collaboration between local Mental Health Authorities, Public Safety Coordinating Councils, Corrections, and the Oregon Youth Authority and incorporate the results of this collaboration in local blueprint plans.

5. Create a seamless data system using an "information system guidance committee."

6. Simplify Oregon Health Plan enrollment process and eliminate periods of noncoverage.

7. Conduct a study and analysis of the needs of the mental health workforce.

8. Delineate workforce needs and responsibilities and train accordingly.

9. Form a consortium of public and private groups to provide public education.

10. Change state agency administrative functions to support local service delivery.

11. Establish an independent ombudsperson.⁸²⁶

The Alignment Work Group also recommended the funds in a housing trust created in 1999 from the proceeds of the sale of a state psychiatric facility (Dammasch State Hospital) be transferred to the Oregon Housing and Community Services Department to leverage and grow.⁸²⁷

After the report was submitted, the state legislature passed a bill, S.B. 411,⁸²⁸ requiring the Mental Health and Developmental Disability Services Division to develop "a comprehensive, long-term plan for providing appropriate and adequate mental health treatment and services to children and adults." The plan is to be based on needs identified in biennial plans submitted by community mental health and developmental disabilities programs and must be consistent with the findings of the January 2001 report of the Mental Health Alignment Work Group. The new legislation also requires the division to work with consumers, families, providers, advocates, and schools in developing the plan and requires that the plan include an analysis of the budgetary and programmatic effects of implementing the plan. The plan is to be completed by February 1, 2003.⁸²⁹

It is interesting that although the Alignment Work Group's lengthy report never even mentions Olmstead, the director of the Office of Mental Health Services characterized S.B. 144 as "an attempt to respond to the Supreme Court decision on the Olmstead lawsuit."⁸³⁰ Apparently, S.B. 144 originally focused more on "individualized Olmstead planning" but was revised to be consistent with the recommendations of the Mental Health Alignment Work Group.⁸³¹

A third planning effort, the Governor's Task Force on the Future of Services to Seniors and People with Disabilities, developed independent of the two work groups in mental health and was created by executive order in June 2001.⁸³² It is composed of members of the Legislative Assembly and representatives of the Commission on Senior Services, the Disabilities Commission, the Association of Area Agencies on Aging and Disability, the Housing and Community Services Department, the Department of Human Services, the Governor's Office, consumers, advocates, long-term care providers, home care providers, physicians, and a representative of the financial services industry. Its purpose was to develop a long range plan for services to elders and people with disabilities that would address cost containment, development of needed long-term care services, development of long-term care financial planning, identification of housing needs, modernization of deteriorating long-term care facilities, and workforce development.⁸³³

The recommendations of the Task Force on the Future of Seniors and People with Disabilities were finalized at a task force meeting on August 7, 2002.⁸³⁴ The focus of the plan is on cost containment (for example, by promoting the use of private alternatives to funding long-term care insurance), prevention and amelioration of disability, and overcoming transportation and housing barriers that force elders and people with disabilities to choose more costly out-of-home placements. The report does not mention Olmstead, nor do the recommendations address unnecessary institutionalization, methods for identifying people who could move from institutional long-term care facilities to the community or desire to do so, or the creation and funding of community services for people who wish to leave institutions.⁸³⁵ The closest the report comes to addressing unnecessary institutionalization is in its recommendation that "All aging and disabled Oregonians shall have a variety of community housing options available ranging from remaining in their own homes to living in long-term care facilities."⁸³⁶ Nevertheless, most of the recommendations are quite compatible with Olmstead, and the recommendations in the areas of housing and transportation are sound and occasionally creative (for example, changes in land use requirements to permit accessory housing in single-family residential areas to enable elders and people with disabilities to receive care from their families with as little disruption to family life as possible).⁸³⁷

According to Oregon advocates who attended an ILRU Olmstead training on August 14, 2001, a recent waiver audit identified inappropriate placements of people with disabilities in nursing facilities.⁸³⁸ However, none of the three reports and plans discussed above addressed how this problem will be resolved.

While the state's planning processes were unfolding, Oregon advocates formed an Olmstead Work Group as a subcommittee composed of representative members of an emerging cross-disability coalition. Some overlap existed in the membership of the Olmstead Work Group and the state's two mental health work groups discussed above, but the advocates seemed quite isolated from the Seniors and People with Disabilities Task Force.⁸³⁹ At an initial meeting, the group discussed whether its focus should be "to push the state to produce an Olmstead plan, or rather to advocate for policy and services that are in concert with the intent of Olmstead."⁸⁴⁰ In essence, the group decided to pursue both strategies.⁸⁴¹ In a subsequent action plan, the group resolved to work to integrate Olmstead principles and language into policy advocacy initiatives.⁸⁴² The group obtained a grant from the Department of Human Services to fund start-up costs of the cross-disability coalition and for two specific projects: a study of the numbers of people in institutions in Oregon and two training sessions on Olmstead via distance learning.⁸⁴³

The study of institutional residents was carried out by a contractor of the Oregon Developmental Disabilities Council and published in May 2002;⁸⁴⁴ the distance learning sessions were held in early 2002 at a large number of downlink sites.⁸⁴⁵ At this writing, the Olmstead Work Group continues to meet.

(b) PROGRESS IN COMMUNITY INTEGRATION

By the time of the Olmstead decision, Oregon already had made significant progress in reducing institutional populations. After the closure of the Fairview Training Center in February 2000, about 80 persons with developmental disabilities remained institutionalized at the remaining state institution, the Eastern Oregon Training Center;⁸⁴⁶ in addition, 180 persons with developmental disabilities were housed in nursing facilities in 2000.⁸⁴⁷ At the end of 2001, 380 persons institutionalized in Oregon's two state psychiatric hospitals had been there for more than a year.⁸⁴⁸ Oregon has been a national leader in reducing nursing home beds and population, by 8 percent and 17.2 percent, respectively, between 1996 and 2001.⁸⁴⁹ During the same period, however, Medicaid spending on nursing facility services rose an astonishing 229 percent.⁸⁵⁰ Oregon's nursing facility population of 9,444 in 2001 ranks it 29th among the states in nursing home use measured as a percentage of the total population age 65 and older.⁸⁵¹

(c) SYSTEMS CHANGE ACTIVITIES

Oregon has been a leader in the planned reconfiguration of services to support former institutional residents in the community and reduce waiting lists. In 1997, the Mental Health and Developmental Disability Services Division developed a long-range plan that provided for the planned closure of the Fairview Training Center, at which the annual cost of care had risen to $212,000 in the course of compliance with the court orders in United States of America v. Oregon, a case brought by the United States Department of Justice in the 1980s.⁸⁵² The plan provided that the funds freed up from the closure of Fairview be reinvested in community services and projected that even after the costs of providing all Fairview residents with community services were subtracted, enough money would remain to offer in-home support to 1,500 persons on waiting lists and to raise the wages of direct support professionals by one dollar an hour.⁸⁵³

Additional support for community services was created by sale of the Fairview property itself. As a result of legislation enacted in 1999, the proceeds from the sale of Fairview and the Dammasch State Hospital were placed in a trust fund to improve community housing opportunities for people with disabilities.⁸⁵⁴

The legacy of the high cost of compliance with the Fairview court orders was long waiting lists for developmental disability services in the community. In 2000, the Oregon Advocacy Center filed Staley v. Kitzhaber,⁸⁵⁵ alleging that the state had failed to provide services in the most integrated setting for adults with retardation who were eligible for ICF/MR services. Even before Staley was filed, the legislature had passed S.B. 919,⁸⁵⁶ directing the Mental Health and Developmental Disabilities Services Division to prepare a plan to provide universal access to services for all Oregonians with developmental disabilities. In February 2000, the state published a Plan for Universal Access, committing itself to provide a "support services" waiver valued at about $400 per month for all persons eligible for developmental disability services to supplement support provided by family and friends and to provide "comprehensive services" valued at about $4,000 a month to meet more extensive needs in in-home or out-of-home settings.⁸⁵⁷ In September 2000 the parties entered into a settlement in Staley on the basis of the Plan for Universal Access.⁸⁵⁸

However, in 2002, after a dramatic decline in state revenues, the legislature directed that the "support services" waiver be terminated unless voters passed a referendum to increase state taxes. The referendum was held in January 2003 and did not pass. Under threat of being found in contempt of court, the state has delayed termination of the program (originally scheduled for March 2003).⁸⁵⁹

In 2000, Oregon received approval from HHS for a Section 1115 waiver to conduct an Independent Choices cash and counseling demonstration project for up to 300 adults eligible for long-term care services. In comparison with the other Cash and Counseling demonstration waivers in Arkansas, Florida, and New Jersey, the Oregon demonstration makes less use of fiscal intermediary intervention. A monthly service allocation is paid directly into a consumer's Independent Choices checking account; the consumer pays providers directly out of this account and deducts the appropriate taxes. However, a payroll service is available to people who need assistance. The waiver also allows payments to spouses.⁸⁶⁰ Consumers receive training in managing employees and payroll, conducted by Centers for Independent Living and Senior Service Centers, before participating in the waiver. They must pass an exam to be eligible to conduct payroll tasks; if they or a designated surrogate does not pass the exam, they use a fiscal intermediary. The CILs and Senior Centers provide up to six hours of technical assistance a year to each consumer on request.⁸⁶¹

Oregon received a Real Choice Systems Change grant in 2001 with a particular focus on persons with mental illness, designed to promote consumer direction and increase community capacity.⁸⁶² The grant supports a pilot project in one Oregon county of a consumer-directed brokerage model for people with mental illness: an independent organization that employs or contracts with person agents to assist consumers to define their personal goals, access community resources to achieve those goals through networking and community development, and manage the financial administration, contracting, and paperwork required to pay for individual support.⁸⁶³ The grant also provides funds for the development of drop-in centers, supports cross-disability events and conferences, and supports change in the individual planning used by the mental health system to a person-centered model.⁸⁶⁴

32. PENNSYLVANIA

(a) THE PLANNING PROCESS

On March 21, 2000, 16 advocacy organizations joined in a letter to the secretary of the Department of Public Welfare urging her to develop and implement an Olmstead plan to provide effective community-based services to people remaining in state developmental disabilities institutions; to continue planning for community mental illness services with additional input from consumers and family members; and to convene a nursing facility planning process with significant, diverse consumer involvement. The signatories were an unusually broad coalition of disability and elders' organizations, including The Arc, the UAP, the Mental Health Association, NAMI, the Multiple Sclerosis Association, the Statewide Independent Living Council, the Coalition of AIDS Services Organizations, Speaking for Ourselves (Pennsylvania's People First organization), the Spina Bifida Coalition, the Center for Advocacy for the Rights and Interests of the Elderly, and Pennsylvania Protection and Advocacy. Advocates convened a meeting in April 2000 to discuss how the process for developing community services for nursing facility residents should proceed.⁸⁶⁵ According to advocates in Pennsylvania, the request was ignored, and no Olmstead planning has occurred in Pennsylvania.

(b) PROGRESS IN COMMUNITY INTEGRATION

Historically, large numbers of persons with disabilities have been institutionalized in Pennsylvania, and despite the success of litigation and other advocacy strategies to create community living opportunities for institutionalized persons, the state's institutional populations remain very high. In 2000, 1,969 persons with developmental disabilities lived in state institutions, another 2,350 were housed in nursing facilities, and 1,869 were institutionalized in large private ICFs/MR.⁸⁶⁶ The population in congregate facilities for persons with developmental disabilities decreased by about 33 percent between 1992 and 2000-it is difficult to calculate a percentage decrease over a longer period because the number of persons with developmental disabilities in nursing facilities was not accounted for until 1992. Most of the decrease came from people living in state institutions, whose population fell by 48 percent during this period. Two successful lawsuits, Richard C. v. Houstoun⁸⁶⁷ and Nelson v. Snider,⁸⁶⁸ and vigorous advocacy for planned deinstitutionalization contributed to this result. However, movement to the community from nursing facilities and large private ICFs/MR proceeded at a much slower pace: On the average, only 72 persons left nursing facilities each year between 1992 and 2000, and only 28 left large ICFs/MR each year.⁸⁶⁹

In 1997, the Pennsylvania Office of Mental Retardation published a plan developed by its Planning Advisory Committee, a stakeholder group co-chaired by the director of the Protection and Advocacy system, and the director of a service provider agency that would have reduced the population of state institutions from 2,600 to 1,500 and the population of large private ICFs/MR by another 400 persons by the end of FY 2002.⁸⁷⁰ Although significant reduction in the population of state institutions did occur, the overall deinstitutionalization targets of the plan were not met, and even the Governor's Budget for 2001-02 provided funding for only 150 people to leave state developmental disabilities institutions in that year instead of the promised 200.⁸⁷¹ Moreover, the initiative has not been continued in the 2002-03 budget now that the original five-year period has ended. Pennsylvania's large private ICFs/MR are operated by politically powerful providers, are defended by residents' families, and serve many out-of-state residents. Advocating successfully for the right to community living of the 1,800 people in these facilities has always been a challenge for Pennsylvania advocates and is likely to remain so in the near future.

In the late 1990s, after newly compiled data revealed that more than 14,000 persons with retardation were waiting for services and that more than 3,500 of these persons were in emergency or critical need of services,⁸⁷² the Pennsylvania Community Advocacy Coalition, an alliance of organizations committed to community integration of people with developmental disabilities, made ending community waiting lists its first priority. In part this decision was based on the recognition that although deinstitutionalization litigation had resulted in the creation of well-resourced community services for former institutional residents, the needs of persons living at home with their families had been neglected and ignored during the process.

A well-organized advocacy effort by the Pennsylvania Waiting List Campaign was successful in persuading Governor Ridge to launch a five-year, $853 million plan to provide services to persons on waiting lists. However, in 2002, in the budget for the third year of the initiative, faced with a $1.2 billion shortfall in revenue, Governor Schweiker backed away from the commitment and proposed a 30 percent cut in services. The governor's budget for 2002-03 also contained funding for only 57 persons to move from institutions to the community: 33 from mental health institutions and 24 from the mental retardation system.⁸⁷³ On May 30, 2002, families and advocates filed a lawsuit in federal court, Sabree v. Houstoun, on behalf of people waiting for services.⁸⁷⁴

Populations of state psychiatric facilities in Pennsylvania are also very large. Although the state claims that state hospital population fell by 53 percent in nine years,⁸⁷⁵ at the end of 2001, 1,842 residents of those facilities had lived there for more than a year,⁸⁷⁶ and it was not until 1998-99 that the Pennsylvania Department of Public Welfare spent more for community-based services than for state inpatient hospital services.⁸⁷⁷ Litigation brought by advocates has focused on obtaining adequate community services and support for former state hospital residents in the community and is widely regarded as successful.⁸⁷⁸

In addition, the state Protection and Advocacy Association estimates that approximately 1,200 children with mental illness, autism, and other significant medical and behavioral disabilities are segregated in residential treatment facilities licensed by the Office of Children, Youth and Families. In June 2002, the Medical Assistance Advisory Committee passed a resolution urging the state mental health and medical assistance agencies to begin a planning process to develop a system of services for children who without those services will be institutionalized in residential treatment facilities.⁸⁷⁹

Between 1996 and 2001, the number of nursing facility residents and nursing facility beds declined by 4.2 percent and 1 percent, respectively, whereas Medicaid spending on nursing facility services increased by 63 percent to more than $3.6 billion.⁸⁸⁰ With 82,971 nursing facility residents in 2001, Pennsylvania is 17th in the nation in nursing facility use when measured as a percentage of the state's total population age 65 and older.

(c) SYSTEMS CHANGE ACTIVITIES

The Multi-Year Plan for Pennsylvania's developmental disabilities service system developed in 1997 squarely confronted the disparity in resources between the state institutions and large private ICFs/MR, in which 12 percent of the population is supported with 47 percent of the funds, and the community service system, in which 88 percent of the population is supported with only 53 percent of the funds, recommending the unification of funding systems under a single managing entity and the elimination of categorical allocations. Although this recommendation was not carried out during the original five-year planning period, the Office of Mental Retardation is working toward this goal in a project reportedly modeled on Wyoming's Doors project. The Pennsylvania version, called the Transformation Project, contains a method of portable funding that is designed to afford consumers more choice and reduce incentives for placement in more costly congregate settings.⁸⁸¹

However, the primary impetus for the Transformation Project came from CMS, which in an audit of Pennsylvania's home- and community-based waiver program found that the program did not comply with the Medicaid choice of provider requirement, 42 U.S.C. § 1396a(a)(23), and also found deficiencies in the state's actions to ensure the health and safety of waiver recipients. The Transformation Project responds to CMS's findings by assigning an individual budget to each consumer, called the Individual Estimated Resources (IER), which the person can take to the providers of his or her choice.

Advocates have sharply criticized the IER because as currently designed, it will impose a budget for the person's services before the person's individual needs are identified in a comprehensive assessment and plan. They note that the budget process, based on a set of questions based on the "medical model" of disability in which people with similar disabilities will be assigned the same amount of funding, was designed by consultants from Deloitte and Touche who lacked expertise in developmental disabilities and that the process seems designed for people living at home with their families rather than people who may lack such sources of natural support.⁸⁸² In a letter to the 2002 gubernatorial candidates, a broad coalition of advocacy organizations, including ADAPT, several Independent Living organizations, and the Mental Health Association, pointed out that the project, by arbitrarily limiting funding on the basis of a person's disability profile based on actual support needs, may jeopardize compliance with waiver health and safety requirements. They noted the lack of input into the project from people with disabilities and their families, the absence of evidence of the project's feasibility, the likelihood that it will drive small providers out of business, and the fact that it relies on an increased level of responsibility for support coordinators who are unable to perform many of their responsibilities in the current system. The coalition called for a moratorium on implementation of the Transformation Project.⁸⁸³

Pennsylvania's services for people with physical disabilities, for many years plagued by a shortage of funding for personal assistance services, received significant increases in funding as recently as the 2001-2002 fiscal year,⁸⁸⁴ in large part because of the efforts of advocates who insisted that the state apply for home- and community-based waivers. Advocates report that waiting lists for personal assistance services have been reduced to such an extent that people who wish to leave nursing facilities are able to do so.

Access to community services as an alternative to nursing facility placement, however, is much more problematic for Pennsylvania's elders. In 1999, a work group of the Pennsylvania Intra-Governmental Council on Long Term Care produced a plan to shift funding from nursing facilities to services in elders' homes.⁸⁸⁵ In early 2000, a bill to implement the work group's recommendations-the Assisted Living Reform Act-supported by a broad coalition of elders and people with disabilities, including HIV/AIDS, was introduced in the state legislature.⁸⁸⁶ The bill defined "assisted living" services to include services in a consumer's home or the home of a family member or friend, as well as services in a licensed assisted living residence or personal care home. (Currently, most services called "assisted living" are provided in personal care boarding homes.)⁸⁸⁷ The bill would have allowed consumers to choose assisted living services, including cognitive support services, from a full menu of services; established subsidies of housing costs to avoid nursing facility placement where housing subsidy plus assisted living services would cost less than a nursing facility placement, as well as funding for home and environmental modifications in excess of existing waiver caps and low-income housing tax credits and loans to persons who were otherwise ineligible for Medicaid or housing subsidies; and required that public funding for assisted living follow the individual rather than the institution.⁸⁸⁸ Although the bill was the product of two-and-a-half years of work by the task force, had strong bipartisan support, and was supported by a broad consensus of stakeholders, it died in committee in 2000-2001 and again the following year.

In 2001-02, Pennsylvania expanded home- and community-based care for elders with the aid of funds from the tobacco settlement. The state also operates a Family Caregiver Support program to support families who care for a relative older than 60 with chronic illness or a disability. It is funded from the state's general fund and provides for about 3,500 families at an average annual cost of $2,900 per family. The program is administered by the Area Agencies on Aging, which reimburse family caregivers directly rather than through provider agencies. In addition to reimbursement for respite care, supplies, and equipment not covered by Medicare and Medicaid, families may receive grants of up to $2,000 for home modifications or purchase of assistive devices.⁸⁸⁹

However, the state's long-term care system still contains many barriers to the receipt of home- and community-based services. A March 2002 report by the Home and Community-Based Barriers Elimination Work Group of the Pennsylvania Intra-Governmental Council on Long Term Care identified 22 administrative, informational, and systemic barriers to obtaining home- and community-based services, including a lengthy and complicated process for application, determining eligibility, and arranging for services; the absence of a seamless application process; unavailability of funding for housing; lack of publicly funded options for eligible-waiver consumers needing 24-hour services (under Pennsylvania law, a person who needs a nursing facility level of care cannot live in another type of residential program, such as an assisted living facility, where 24-hour services are available; the person's only option is to enter a nursing facility); an inadequate workforce to support the needs of consumers who want home- and community-based services; the absence of a coordinated system of quality assurance for all home- and community-based services; narrow eligibility categories in existing waivers; lack of standards and enforcement of standards governing personal care homes that may house waiver residences; lack of public funding for services in assisted living residences; and a Medicaid resource level that is set too low.⁸⁹⁰

Another barrier is the state's failure to permit interim presumptive eligibility for home- and community-based waiver services, although this is permitted and encouraged by CMS. Interim presumptive eligibility, which allows a program to admit the individual first and determine eligibility later, is routine for nursing facility applicants, whereas consumers who apply for home- and community-based waiver services must wait as long as four months for eligibility to be determined so they can receive those services.⁸⁹¹ The 2002-03 Governor's Budget proposed to eliminate the home maintenance deduction, which allows a portion of the payment to nursing facilities to be diverted to the cost of maintaining a consumer's residence during a temporary nursing facility placement. Without the home maintenance deduction, some consumers will be unable to maintain their homes, thus increasingly the likelihood that the nursing facility stay will become long term.⁸⁹²

The Pennsylvania Intra-Governmental Council on Long Term Care, which includes wide representation from elders, people with disabilities, providers, unions, and other stakeholders, has consistently made constructive recommendations to overcome the barriers to community integration in the service delivery system for elders. However, many of its recommendations for systemic change have not been adopted; advocates point to the fact that the council is housed in the Department of Aging and that its recommendations have not always been embraced by the state Medicaid agency, the Department of Public Welfare, as an additional barrier to change.

33. RHODE ISLAND

(a) THE PLANNING PROCESS

Rhode Island does not have a comprehensive Olmstead planning process. However, it did obtain a grant from SAMHSA to develop a plan to move children with mental illness to less restrictive settings.⁸⁹³ The Parent Support Network of Rhode Island, a consumer organization, was to carry out the planning process under contract with the state Department of Children, Youth and Families (DCYF).⁸⁹⁴

Although DCYF has not issued such a plan, an intergovernmental task force chaired by two legislators, the Ideal System of Care Committee, published a plan in April 2002 to reform children's services more generally over the next five years.⁸⁹⁵ The plan's central theme is transformation of the state's service system for children and youth to a family-centered approach that would focus resources on preventing out-of-home placement and training in best practices. Under the plan, state agencies would collaborate more effectively under the leadership of a strengthened and restructured version of the Children's Cabinet (an existing entity within the executive branch), toward the goal of empowering communities to support children and families more effectively. The DCYF service delivery system would be restructured from a system of isolated individual providers to one of regionally focused, community-based, lead agency-managed care networks that will have to accept all referrals and cannot reject the children and youth who pose the greatest challenges. These networks will then be required to ensure that the children, youth, and families referred to them are provided what they need when they need it within a comprehensive network of care and services. The committee also recommended developing agreements between DCYF and the Family Courts and other state agencies that share responsibility for children's services; developing DCYF and Medicaid provider capacity; developing provider fiscal management and training skills through a Child Welfare Training Program; and establishing lead agency-based care networks through an RFP process. Although the emphasis of the plan is on preventing unnecessary institutionalization of children and youth by reorganizing services in local communities, the committee recommended specifically that youth placed in out-of-state facilities be brought back to Rhode Island as in-state capacity is developed through fee-for-service arrangements with service providers.⁸⁹⁶

A more recent report by DCYF to the state House of Representatives more forcefully articulated the components of systems change necessary to prevent unnecessary institutionalization of children with disabilities. The report focused on the practice of "night-to-night" placements, that is, temporary placements in inappropriate settings, of children newly entering the DCYF system or those whose placements had been disrupted. The system's effort to address this problem arose from litigation filed by the state Child Advocate in 1986, which resulted in a succession of consent decrees. The report noted that DCYF's response to each stage of the litigation had been "to seek additional appropriations from the General Assembly to add more beds."⁸⁹⁷ However, although those efforts resulted in temporary alleviation of the problem, each such success was short-lived. The agency concluded that the request for more out-of-home beds had failed to address the underlying causes of emergency placements:

The history of the serious efforts to eliminate night-to-night clearly demonstrates that simply adding more beds through an infusion of new funds does not address the root causes. The state's current system is poorly structured to effectively address the chronic issues facing many of these young men and women and their families. "More of the same" is inefficient and, given current state resources, at best is a severely constrained approach. A different much more systemic response must be taken to allow the DCYF and the state to effectively address this issue.⁸⁹⁸

The agency concluded that the only way to resolve the costly cycle of requesting more beds and dollars was "providing youth and families with strong community-based systems of care," thus reducing the number of youth referred to DCYF and allowing the agency to focus limited resources on the youth and families needing the highest levels of support and services.⁸⁹⁹

To accomplish this, however, the agency concluded that it needed an "an even deeper strategic and systemic approach" in which all the systems supporting children and youth, not only DCYF, would make changes:

This effort must be led by the DCYF in full collaboration with other state agencies and our provider partners, schools, law enforcement, advocates, the Family Court, the Governor and the members of the General Assembly. Collectively we have the expertise and resources in Rhode Island to develop a system which is more responsive to the strengths, needs and risks of children, youth and their families.⁹⁰⁰ Only then would DCYF be able to "reserve the most costly residential treatment programs for those youth who truly need that level of care and keep their length of stay in those placements only as long as necessary and follow-up with strong transitional support."⁹⁰¹ To that end, the agency embraced the recommendations of the Ideal System of Care Committee, including the shift to a Lead Agency Care Network Service Delivery Model and strengthening the roles of DCYF regional offices and their staff.⁹⁰²

In June 2002, the Rhode Island legislature enacted a Joint Resolution "to reform and finance long-term care services through a consumer-centered system of coordinated services and integrated care."⁹⁰³ The legislative action includes two provisions that have potential for significant change in the state's long-term care system for elders. First, the legislature voted that the allocation of additional funds in the coming five years would be divided between institutional and community services in proportions ranging from 90 to 10 in favor of institutional services in the first year of the plan to 50 to 50 in the fifth year of the plan. Second, the legislature voted that by March 2003, all agencies with responsibilities for long-term care should submit a proposal for long-term care system reform.⁹⁰⁴

(b) PROGRESS IN COMMUNITY INTEGRATION

Rhode Island closed its only state developmental disabilities institution in 1994; however, since that time, no further reduction in the number of institutionalized persons with developmental disabilities has occurred. In 2000, 162 persons lived in nursing facilities and another 25 in a private ICF/MR. These numbers were fairly stable over the preceding five-year period.⁹⁰⁵ Beginning in the 1990s, advocates have focused, with significant success, on encouraging the system to enhance community integration by enabling people with developmental disabilities to move from group homes to more natural settings, such as family living and supported living. The reduction in the number of persons living in ICFs/MR with four to 15 beds and other group homes of more than six beds from 836 in 1990 to 198 in 2000 reflects the results of that effort.⁹⁰⁶ The state Arc reported recently that a consent decree was recently signed that would allow 40 persons to move from group homes to family living situations.⁹⁰⁷

At the end of 2001, 76 persons housed in state psychiatric institutions had been there for more than a year.⁹⁰⁸ Nursing facility use is fifth in the nation when measured as a percentage of the state's total population age 65 and older. Although the number of nursing facility residents declined very slightly (0.8 percent) from 1996 to 2001, the number of beds rose by 6.1 percent,⁹⁰⁹ and Medicaid spending on nursing facility services increased by 20 percent during the same period.⁹¹⁰

By fall 2002, the efforts of the Rhode Island DCYF to bring children home from out-of-state residential placements already had borne fruit. The agency placed a moratorium on out-of-state placement and, in 2001, engaged a contractor to review all children placed in out-of-state Purchase of Service (POS) programs to ensure that children placed in these programs were returning to Rhode Island in a timely manner. In DCYF's assessment, the contractor's review was highly effective: From April 1, 2001, through September 11, 2002, a total of 209 children left POS placements, both in-state and out-of-state. The majority, 57 percent, returned home, most with wraparound services; 33 percent moved to a less restrictive level of care; and 10 percent moved to a more restrictive level of care, such as a shelter, hospital, or other POS placement. The agency concluded that the combination of the moratorium and the placement review had saved the state more than $1.5 million in FY 2002 and is expected to save an additional $3 million in FY 2003. The agency has expanded its contract for review of POS programs to include similar reviews of all children and youth in out-of-home placements, with children and youth in emergency shelter programs scheduled to be reviewed beginning in January 1, 2003.⁹¹¹

(c) SYSTEMS CHANGE ACTIVITIES

Rhode Island has a Community-Integrated Personal Assistance Services and Support grant to provide consumer-directed personal assistance services for children and families to children and families with all types of disabilities. The grant is designed to fill a gap in personal assistance services, which under the state plan are not available to children outside residential facilities.⁹¹²

34. SOUTH CAROLINA

(a) THE PLANNING PROCESS

In November 2000, Governor Hodges issued an executive order establishing the South Carolina Home and Community-Based Services Task Force and charging it with developing a comprehensive, effectively working plan for compliance with Olmstead. The task force was to conduct a review of all services available to people with "physical, mental or developmental disabilities" in South Carolina, analyze their availability and efficacy, identify affected populations, improve the flow of information about support services in the community, and remove barriers that impeded community inclusion. The task force was to ensure the involvement of consumers, families, providers, and advocates and submit a report to the governor with specific recommendations for improvements in services and a timeline for implementation.⁹¹³ A task force of 33 members, representing state agencies, service providers, consumers, families, advocates, and members of the state legislature, was formed and divided into three workgroups that paralleled the three state agencies that provide services to people with disabilities in South Carolina: the Department of Disabilities and Special Needs (DDSN) (persons with developmental disabilities, autism, brain injuries, and spinal cord injuries); the Department of Mental Health (DMH); and the Department of Health and Human Services (HHS) (elders and people with physical disabilities). The task force issued its report in August 2001.⁹¹⁴

Although the task force report lists the home- and community-based services available to people with disabilities in South Carolina and the numbers of persons waiting for services (but only for those services that maintained waiting lists),⁹¹⁵ it does not really analyze the extent to which those services could be used to get people out of institutions. The plan does not specifically address the level of awareness and agreement among stakeholders and decisionmakers on the elements needed to create an effective system; however, it does commit the state to the principles of choice and self-determination, autonomy and consumer direction, flexibility, cultural sensitivity, empowerment, community integration, and access to activities and resources available to all.⁹¹⁶

The plan sets the goal, "All persons living in institutions who have indicated their desire to move to a community setting should move to the community within one year."⁹¹⁷ This is inconsistent with Olmstead, which held that institutionalized persons have a right to move to a community-integrated setting if they can handle and benefit from community placement and if they do not oppose community placement. To exercise the right, the person does not need to have affirmatively indicated a desire to move. The plan assumes that many people will choose to remain in the institutions, for it recommends improvements in the quality of services in institutions and nursing facilities.⁹¹⁸

The plan recommends establishing an independent assessment process, in which institutional residents would be asked, "Where and how do you want to live?" and, "If you had the option of getting help in some other setting, including a home of your own, what would you use?"⁹¹⁹ Although the concept of independent assessments is positive and the task force also recommended developing a "community curriculum" to better inform consumers and families on the options available to them in the community,⁹²⁰ the process does not ensure that the decision of whether to pursue community placement will be made by "the affected individual" rather than by a parent or guardian. The task force also recommended that a "choice" question be incorporated into the Minimum Data Set (MDS) questionnaire, asking residents whether they would prefer to live somewhere else, and suggested that if this inquiry proved useful, the state might advocate that CMS apply it nationwide and incorporate it into the MDS software package.⁹²¹ The plan stops short of stating that independent living advocates should play a role in the assessment process.

The plan does not identify the number of persons in each type of facility who could be served in a more integrated setting. The plan notes that "there is no single, comprehensive survey indicating the number of institutionalized individuals who may meet the conditions for community services described in the Olmstead decision." The only relevant data are collected for Medicaid-supported applicants for nursing facilities, who are assessed to determine whether they meet the medical criteria for nursing facility placement; this, of course, does not address whether the person could live in the community. The plan recommends that improved data systems be established to track persons who are affected by the Olmstead decision as well as those at risk of unnecessary institutionalization;⁹²² however, if such tracking systems are based on a flawed understanding of who is affected by Olmstead, they would be of limited use.

The plan does a good job of analyzing the gaps in services, the lack of service capacity for persons at risk of institutionalization, and the barriers to returning to the community once a person is institutionalized. The gaps include lack of timely identification of people most vulnerable to unnecessary institutionalization; screening through Medicaid's Early Periodic Screening, Diagnosis and Treatment program that is inadequate to ensure that children with all disabilities, especially mental illness, are provided treatment that will prevent worsening disabilities and placement in more restrictive settings; lack of services for people with mental illness and co-occurring substance abuse; categorical eligibility criteria that exclude people with disabilities such as spina bifida, ALS, cerebral palsy, multiple sclerosis, and brain injuries; and lack of adequate crisis response.⁹²³ The barriers to returning to the community include lack of knowledgeable transition coordinators; loss of personal resources; family fears; delay between time of discharge from nursing facilities and initiation of community supports, such as home modifications, assistive technology, durable medical equipment, and case management; state policies that do not allow a "bed hold," thus discouraging people from attempting a move to the community if they fear losing their institutional placement if community placement is not successful; lack of financial incentives for facilities to help residents move to the community; and inadequate interagency planning for children.⁹²⁴

The plan recommends preventing unnecessary institutionalization of persons at risk of institutionalization by training "all persons involved in the long term care process," including

South Carolina HHS eligibility workers and hospital discharge planners, to provide clear explanations of home- and community-based services before the person chooses the location of his services.⁹²⁵

Most of the recommendations in the plan are designed to improve existing community services, including service coordination, direct support professional recruitment and retention, family support, respite, assistive technology, transportation, residential support, and self-advocacy. The plan set modest goals for increase in community capacity, for example, the provision of residential and day services for an additional 300 persons each year for the next two years by DDSN (the agency had provided an average of 181 new residential opportunities for persons with developmental disabilities from 1992 to 2000, but the proposed 300 new programs would also service people with autism and brain or spinal cord injuries)⁹²⁶ and an increase in residential opportunities for 20 persons each year by DMH.⁹²⁷

Funding to develop community homes for 300 additional persons was in fact included in DMH's budget for 2002-2003. The budget documents justify the additional funding on the ground that it "will avoid lawsuits that might arise from the ADA aspects of the Olmstead Supreme Court decision requiring that waiting lists move at a reasonable pace."⁹²⁸ However, the 300 persons were not slated to come from institutions but from the waiting list for community services, which as of June 2001 included more than 1,500 people.⁹²⁹

The plan recommends amending the Nurse Practice Act to allow implementation of a Medication Administration Technician Certification, the delegation of other routine procedures to specially trained direct care staff, and creation of an exception to the definition of nursing for consumer-directed personal assistance services provided in the community. Other recommendations include eliminating gaps in eligibility for services; conducting an economic analysis of the potential long-term cost savings that would be realized by developing a community infrastructure; reviewing long-term care insurance currently available in the market for potential institutional bias; including personal care services and private duty nursing services as options in the Medicaid state plan; and integrating funding streams for nursing facility and waiver services so that funding can follow the person.⁹³⁰

At about the same time that the Home and Community Based Task Force was submitting its report in the summer of 2001, the director of the state Department of Mental Health commissioned a planning process within his agency to "guide the department over the next few years of system change."⁹³¹ The Steering Committee for the planning process included the directors of the principal advocacy organizations for persons with mental illness, among them the Protection and Advocacy system and consumer and family groups.⁹³² The planning process began in November 2001 by eliciting input from more than 650 stakeholders through a combination of distance education technology and face-to-face meetings. The director of the DMH had already decided to refocus the agency's mission on recovery and to give priority in service development to "recognized, evidence-based best or promising practices."⁹³³ Thus, local stakeholders who gathered at the downlink sites were told the director's vision for the department and asked to identify those programs and services they thought the department did well, the best practice models they would like to enhance or begin, and the steps needed for system change. University-based external facilitators helped gather and analyze the data and input from stakeholders, and a draft plan was submitted to the South Carolina Mental Health Commission in March 2002.⁹³⁴

Making Recovery Real does not appear to have been coordinated with the work of the Home and Community Based Services Task Force, and the work of two planning groups seems somewhat duplicative. Making Recovery Real contains a visionary statement of values, for example, in its commitment to eradicating stigma and to community-based, recovery-focused support: "We believe that people are best served in or near their own homes and the community of their choice. ...We believe in services that build upon critical local supports: family, friends, faith communities, healthcare providers and other community services that offer employment, learning, leisure pursuits, and other human or clinical supports."⁹³⁵ The plan calls for systemic change in the way services are funded, allocating some proportion of the budget for psychiatric hospitals to local community mental health centers to be used for purchase of services, and redesigning the budget allocation process to be based on performance criteria.⁹³⁶

But the plan's actual community integration goals are modest. It refers to Olmstead only once, in the context of setting a goal for the development of 50 additional housing units for consumers with mental illness in 2003 and 2004.⁹³⁷ Goals for expanding services that stakeholders and the DMH found effective in reducing institutionalization-such as the Toward Local Care program, which is based on principles of recovery and merges such services as employment, housing, and assertive community treatment-typically are limited to 10 percent a year.⁹³⁸ Although the DMH had committed in its goals for fiscal year 2001-2002 to "begin to develop" an assessment

protocol to determine all consumers' needs for community services,⁹³⁹ the Making Recovery Real plan does not mention assessing institutionalized persons with mental illness to determine whether community placement might be possible.

(b) PROGRESS IN COMMUNITY INTEGRATION

From 1990 to 2000, South Carolina reduced the number of persons with developmental disabilities who were institutionalized in large congregate facilities by about 50 percent. Virtually all the reduction was in the population of state institutions, which declined from 2,254 to 1,115 in 2000.⁹⁴⁰ The pace of movement from the state-operated institutions slowed significantly after 1999, with a reduction of only 44 persons in 2000 and 31 persons in 2001.⁹⁴¹ The number of residents of private ICFs/MR has remained stable at around 45, and the number of persons with developmental disabilities in nursing facilities has fluctuated but is even higher now (at 121) than it was in 1990 (117).⁹⁴² South Carolina had no small residential settings of 6 persons or fewer for people with developmental disabilities until 1992, but by the year 2000, 2,394 persons lived in such settings.⁹⁴³

The average daily census of South Carolina's psychiatric facilities declined from around 1,600 in 1990 to around 1,000 in 1996 but has remained stable since then.⁹⁴⁴ At the end of 2001, 340 persons institutionalized in state psychiatric facilities had been there for more than one year.⁹⁴⁵ South Carolina experienced some of the highest increases in nursing facility population (9.4 percent) and nursing facility beds (7.7 percent) between 1996 and 2001,⁹⁴⁶ while Medicaid spending on nursing facilities increased by about 37 percent during the same period.⁹⁴⁷ South Carolina is in the mid-range of the states in nursing facility population measured as a percentage of the total population age 65 and older, with 16,117 persons.⁹⁴⁸ The state HHS reported that 225 persons were on waiting lists for nursing facility services in 2001, although this figure had declined from 399 in FY 1998-99.⁹⁴⁹

(c) SYSTEMS CHANGE ACTIVITIES

Even before the state's Olmstead task force had begun its work, South Carolina was already using a "money follows the individual" formula in its developmental disabilities service system. The 1997-98 and 1998-99 Appropriations Acts gave the Department of Disabilities and Special Needs the authority to retarget resources, realign its workforce and shift funding from the state institutions to local communities. During those two years, 165 employees at the state institutions accepted voluntary separation agreements, and the funds for their salaries were transferred to local disability boards. In 2001, the department transferred $2.4 million from the state institutions to local community programs to fund services for the 31 people who moved from state institutions that year and reduced staffing of the institutions by 28 full-time employees.⁹⁵⁰

South Carolina received a Real Choice Systems grant of $2,300,000 to carry out two projects. One is a database of information about services for children and adults; the other is a pilot program in two parts of the state to create the infrastructure to support consumer-directed services across disability groups, including the development of support coordination, fiscal intermediaries, and the use of cash equivalencies.⁹⁵¹

35. SOUTH DAKOTA

(a) THE PLANNING PROCESS

According to the report of the National Council of State Legislatures in early 2002, South Dakota is not conducting any Olmstead-related activities, and state officials do not consider that the state is in noncompliance with the Olmstead standard.⁹⁵²

The number of institutionalized persons with developmental disabilities declined by less than 30 percent between 1990 and 2000. In 2000, 196 persons remained in a state facility, about half the 1990 figure. The number of persons with developmental disabilities in nursing facilities actually increased, from 141 in 1990 to 177 in 2000.⁹⁵³

In December 2001, the state closed a juvenile corrections facility, the State Training School in Plankinton, that had housed 140 children and youth in 1999 but whose population had declined steadily. Governor Janklow announced the closure only about a month before the facility closed and estimated that the state could save $1 million by placing students in state-operated and private programs elsewhere.⁹⁵⁴

Although South Dakota, with 6,952 nursing facility residents, ranks second in the nation in nursing facility use when measured as a percentage of the state population as a whole age 65 and older, both nursing facility population and the number of beds has declined at rates that are significantly higher than the nation as a whole (by 8.6 percent and 5.9 percent, respectively).⁹⁵⁵ During the same period, however, Medicaid spending on nursing facilities grew by almost 60 percent.⁹⁵⁶

In 2002, the state enacted H.B. 1132, establishing a Children's Mental Health Task Force. The task force is charged with investigating alternatives to parents' having to relinquish custody to obtain out-of-home mental health services as well as barriers to service delivery, such as professional shortages, funding adequacy, and access in rural areas.⁹⁵⁷

Although Tennessee has had an active Olmstead coalition composed of advocates for the last two years, the state has declined to participate in formal Olmstead planning activities.

In June, 2001, Tennessee advocates participated in an ILRU/BIA Olmstead training and committed on their return home "to bring advocates, consumers and some money together to fundamentally change the way Tennessee provides long-term care services and supports to comply with the ADA" and specifically, to assure that funding follows the individual.⁹⁵⁸ The participants in the ILRU/BIA training promptly formed an Olmstead coalition composed initially of representatives of the Tennessee Protection & Advocacy Association, People First of Tennessee, the state Arc, the Tennessee Mental Health Consumers Association, several Centers for Independent Living, the Developmental Disabilities Council and other disability organizations and developed a broad community organizing strategy to educate disability activists and their potential allies about the Olmstead decision and create a grass-roots movement for change.⁹⁵⁹ Withing a month the Coalition had convened a state-wide Call to the Table, enlisted representatives of other disability organizations such as ADAPT, United Cerebral Palsy and the Brain Injury Association and planned local forums around the state to identify the community services that are currently available and those that need to be developed.⁹⁶⁰

The Coalition organized workgroups devoted to Consumer Involvement, Needs Assessment, Community Baseline, Housing, Quality Assurance, State Budget and Community Infrastructure. The tasks assigned the workgroups included facilitating "town hall" meetings; meeting with local housing authorities and legislators; identifying the number of people in various types of institutions including county nursing homes, residential schools, jails, board and care facilities and homeless shelters; supporting institutional residents who wish to move; improving transition processes; establishing a baseline of existing community services and those that are lacking; identifying needed changes in quality assurance systems; identifying existing costs and the resources that will be needed to support community living; and improving data systems, policies and procedures and other elements of the community infrastructure.⁹⁶¹ The group established as its goal the development of a plan to include all affected disability populations including elders and people with HIV/AIDS.

In 2002, during the gubernatorial election, the Coalition developed a position paper noting that Tennessee ranked 45th in the provision of home and community based waiver services, that total expenditures for institutional care represent 88% of the state's long-term care dollars, and that Medicaid resources for home health services and Aged, Aged/Disabled and Physically Disabled waiver services comprise only one percent of the state's long term care expenditures. The position paper called upon the new governor to issue an executive order concerning Olmstead implementation, create a broad inter-agency Commission to oversee the implementation of the creation of home and community based services, expand waiver programs, enable funding to follow the person, develop cost efficient models for consumer-directed services and provide for independent contractors to assess the need for community services for "all people with disabilities currently living in institutions who want the choice to move to the community."⁹⁶²

The Coalition continued to hold public forums and training events on Olmstead-related issues and to try to collect data on institutional residents' need for community services. However, the Coalition's ability actually to develop an Olmstead plan was severely curtailed by the refusal of the relevant state agencies to cooperate in the planning process in any meaningful fashion. Without a working relationship with the state agencies with access to data or authority to collect it, it was impossible for the Coalition to collect the data needed to develop an Olmstead plan or meet its own ambitious planning goals. The Tennessee Olmstead Coalition's advocacy work is exemplary for its broad vision, clear-sighted understanding of the necessary components of an Olmstead plan and ability to organize at the grass-roots level. Its experience illustrates the limits of Olmstead planning by advocates working alone when the state refuses to collaborate.

Tennessee certainly could benefit from a comprehensive Olmstead since organizationally, programmatically and financially, the state's service systems for persons with disabilities are in disarray. Because of serious problems in compliance with a consent decree affecting one of the state's developmental disabilities institutions, responsibility for the Department of Mental Retardation Services (DMRS) was transferred to the Department of Finance and Administration,⁹⁶³ where it coexists in an uneasy relationship with the Bureau of TennCare, the state Title XIX agency. The latter agency administers a Medicaid managed care waiver that imposes rigid limitations on a wide range of services needed to support people with disabilities in the community, ranging from therapies and behavioral support to medical services and pharmaceuticals. A legislatively-mandated planning commission reported in November, 2000 that more than 2,000 people with retardation and developmental disabilities were waiting for services; that the service system was "cumbersome and inflexible, providing individuals and their families only expensive options or little or no services"; that rules and regulations are barriers to providing more cost-effective services; that development of new services was hampered by lack of start-up funds; and that the system could not handle a significant increase in service recipients in the future.⁹⁶⁴

In 2001, CMS imposed a moratorium on the largest of Tennessee's home and community-based waivers for persons with developmental disabilities, thus making it almost impossible for the institutionalized persons with disabilities who potentially could be served by that waiver to move.⁹⁶⁵

In 1999, an inter-agency Long-Term Care Services Planning Council found that although four previous planning groups had found that "services other than nursing homes were very limited for individuals who are not able to function totally independently," none of these groups had developed a plan of action to address the severe lack of availability of community services.⁹⁶⁶ Although the Planning Council developed a new waiver application that increased the number of elderly and disabled waiver recipients from 650 to over 2,500, the services included in the waiver are very limited and do not include such essential services as respite, adult day services, assistive technology and assisted living support.⁹⁶⁷

A Three Year Plan drafted by the Tennessee Department of Mental Health and Developmental Disabilities has as one of its purposes to "[p]rovide[] a means by which TDMDD addresses the Olmstead decision."⁹⁶⁸ Although this is the only state planning document that even purports to address Olmstead implementation, it is far from a comprehensive plan. Apart from a commendable goal of providing rental assistance and other housing supports to several thousand additional persons with mental illness (a goal that was probably driven by TDMHDD's System Change Grant discussed infra), the plan sets no targets for increasing community services and supports.⁹⁶⁹

(b) PROGRESS IN COMMUNITY INTEGRATION

In 1991, 1992 and 1995, the self-advocacy organization People First of Tennessee and the United States Department of Justice filed a series of lawsuits against Tennessee's four developmental disabilities institutions.⁹⁷⁰ The three cases were resolved in consent decrees requiring community placement for all institutional residents recommended for community placement by their interdisciplinary teams. Virtually all residents of the four institutions have been recommended for community placement, and the smallest of the four institutions has closed. Implementation of the consent decrees has been painfully slow, in part because Tennessee's service system for persons with significant developmental disabilities was embryonic at the time the cases were settled, in part because of administrative and fiscal barriers to the development of quality community services. In any event, the number of Tennesseeans with developmental disabilities living in state institutions declined from 1,947 in 1990 to 903 in 2000, about 54%. However, the number of persons with developmental disabilities in nursing facilities has decreased only slightly during the same period, from 1,006 to 892.⁹⁷¹

At the end of 2001, 334 of the 981 persons receiving inpatient services in Tennessee's state psychiatric hospitals had been there for more than one year.⁹⁷² In the 1990s, Tennessee received an exemption from the Institutions for Mental Diseases (IMD) exclusion as part of its TennCare managed care waiver, thus allowing Medicaid reimbursement for persons institutionalized in psychiatric hospitals; however, the exemption will expire by 2005.⁹⁷³

With 34,588 nursing facility residents in 2001, Tennessee ranked 12th in the nation in the percentage of the population over age 65 in nursing facilities (4.9%) and 17th in the rate of increase (0.7%) between 1996 and 2001,⁹⁷⁴ while Medicaid spending on nursing facilities increased by about 25% during the same period.⁹⁷⁵

(c) SYSTEMS CHANGE ACTIVITIES

Tennessee received a Real Choice Systems Change Grant in 2001 to design and implement a consumer-directed, accessible housing system for persons with mental illness. Project activities

include hiring four consumer housing specialists and facilitating a series of housing academies and summits.⁹⁷⁶ In 2002, Tennessee received a Community-Integrated Personal Assistance Services and Supports Grant to develop and pilot a system of consumer-directed personal assistance.⁹⁷⁷

37. UTAH

(a) THE PLANNING PROCESS

Utah advocates report that the initiative for Olmstead planning in Utah was consumer-driven, with Barbara Toomer of the Disabled Rights Action Committee (DRAC) taking a leadership role, but that the planning process was unresponsive to people with disabilities. They report that although people with disabilities were welcome to attend and provide input, their input did not affect the plan that the state ultimately drafted.

Disability advocates formed a coalition consisting of DRAC, the Legislative Coalition for People with Disabilities, United Cerebral Palsy, the Independent Living Centers, and the Multiple Sclerosis Society. However, coalition members did not decide on a single, unified strategy but have tended to act individually.

The Olmstead planning process in Utah that emerged in response to pressure from advocates was a joint effort of the Governor's Office of Planning and Budget, the Department of Health, and the Department of Human Services, with participation by other agencies (notably, contributions by housing and transportation agencies are not reflected in the plan). The plan, issued on March 26, 2002, addresses services for elders, adults with disabilities, children placed outside their home, people with mental illness, people with developmental disabilities, and youth in corrections facilities.⁹⁷⁸

The most obvious gaps in the Utah plan are its failure to include a census of institutions, to spell out the pace of movement from institutions to community, or to address waiting lists for community services. The plan acknowledges that several waiting lists exist for services in the community and for available housing, but elected not to include these in the plan because they are not waiting lists of persons in institutions waiting for services.⁹⁷⁹ The implication is that the latter type of waiting list does not exist. In any case, the plan does not spell out what needs to be done to make waiting lists move more quickly.

The plan contains a "Home- and Community-Based Initiatives Action Plan" and a description of "cross-agency action planning," but neither is an action plan with measurable goals, timelines, and a list of concrete action steps. Rather, these provisions are general descriptions of the activities the state needs to undertake or continue to improve its service system, for example, "integrate self-determination concepts into the long-term care system."⁹⁸⁰ The plan contains no timelines for assessments and states only that it will "[d]esign the plan for continuing the Nursing Facility Consumer Education and Assessment Process and determine the feasibility of implementing the processes over long term." As discussed below, the Consumer Education and Assessment process is not designed to identify everyone who can handle and benefit from community living.

The plan acknowledges that people frequently enter the long-term care system without accessing more community-integrated services and that the categorical delivery of services and the lack of community providers are also barriers to community integration.⁹⁸¹ It does not, however, discuss how these barriers will be eliminated, for example, how hospital discharge planners and others who refer people to nursing facilities will be instructed not to do so. The plan does not examine what needs to be done to ensure that people waiting for services are able to move from waiting lists and receive needed community services. Apart from a discussion of the Portability Project, the plan does not state how funding sources will be organized into a coherent system of long-term care or how the system will be changed to redirect funding from nursing facilities.

After the planning process was underway, a group of Utah advocates attending an Olmstead training sponsored by ILRU decided to request a meeting with the Medicaid director to explain what they expected in the state's Olmstead plan and to request the involvement of housing and transportation agencies and additional groups of consumers.⁹⁸² Although the plan contains a list of disability advocacy organizations that provided input,⁹⁸³ advocates report that little consumer input was in fact reflected in the plan.

After a draft of the plan was issued in November 2001, the leader of the Utah Olmstead Planning Group of advocates submitted critical comments on the draft, noting that the plan contained no commitment from the governor, that it was impossible to identify much in the plan that ultimately would be implemented, and that concrete goals and funding and budget requests that were required were not included in the plan. The advocate noted that although the plan gave lip service to input from people with disabilities, none of the input we have given in each of these areas appears to have found its way into this 'plan.'

... Of particular frustration is the fact that there seemed to be agreement from the state to much of our input that was subsequently discarded. There is in fact a sense of being "used" to lend credibility to a process that has in fact been a farce.⁹⁸⁴

The advocate also criticized the lack of data or concrete numbers of persons needing community services in the plan, that community agencies in housing and transportation or educational agencies were not meaningful collaborators in the planning process, that the supports needed for people to live in the community were not identified, and that persons at risk of institutionalization were not a target of the plan.⁹⁸⁵ However, the final plan issued in March 2002 was not changed to address these comments.

The leader of the Utah Olmstead Planning Group reported that the state ignored virtually every criticism that he and other advocates made of the plan, including a detailed critique authored by the Disability Law Center. The state's position was that CMS and OCR, in their recommendations (on which the advocates' training through ILRU training had been based and on which their critiques of the plan were based) both exceeded their authority. Thus, the state had no obligation to address waiting list issues; set specific goals for movement into the community; or conduct good, accurate assessments of people in nursing homes or at risk for nursing home placement.

Advocates report that the state has cut funding and services in tight fiscal times, including funds needed to make the Medicaid Ticket to Work operative, that the systems change grants discussed below have not significantly increased access to community services, and that nothing approaching a "comprehensive, effective, working" plan or effort yet exists.⁹⁸⁶

In December 2002, The Arc of Utah, several individuals with disabilities waiting for services, and the Utah Disability Law Center, the state's Protection and Advocacy organization, filed suit in federal court against the Utah Department of Health, raising claims under Title XIX of the Social Security Act and the Americans with Disabilities Act. The plaintiffs asserted that the state's waiting lists for services violated the ADA by placing people with disabilities at risk of institutionalization. The state's motion to dismiss is pending.⁹⁸⁷

(b) PROGRESS IN COMMUNITY INTEGRATION

In the past 10 years, movement from Utah's institutions to the community for people with developmental disabilities has been slow; the net decline in population of all large congregate settings has been only about 25 percent. Population of state institutions has been halved and was 236 in 2000; the population of people with developmental disabilities in nursing facilities declined by 50 percent, but the population of large private ICFs/MR increased.⁹⁸⁸ Some of the movement from the state institution was the result of a 1993 settlement agreement in a lawsuit filed by the Utah Protection and Advocacy system.⁹⁸⁹ The state's Portability Project will probably accelerate movement to the community by allowing residents of ICFs/MR to transfer to waiver services with portable funding.⁹⁹⁰

At the end of 2001, 126 residents of Utah's state psychiatric facility had lived there for more than a year.⁹⁹¹ Utah's nursing facility population of 5,592 places it in the middle of the states in nursing facility use when measured as a percentage of the total population age 65 and older. From 1996 to 2001, nursing facility population declined by 4.2 percent while the number of beds grew quite significantly (by 8.7 percent),⁹⁹² and Medicaid spending on nursing facilities increased by about 8.5 percent during the same period.⁹⁹³

(c) SYSTEMS CHANGE ACTIVITIES

In the past several years, Utah has initiated two systems change initiatives. In 1998, the legislature enacted the Portability of Funding for Health and Human Services law, and subsequently, in April 1999, the Division of Services for People with Disabilities (DSPD) and the Department of Health Care Financing (DHCF) initiated an open enrollment process to allow residents of ICFs/MR and waiver programs to transfer from one service setting to another. Because DHCF operated the ICF/MR program and DSPD operated the home- and community-based waiver, this also meant transition from one division's services to another. The project requires budget neutrality and an evaluation and planning process to determine whether transition is feasible; thus, as designed, it probably falls short of the requirement of 42 U.S.C. § 1396n(c) that ICF/MR-eligible Medicaid beneficiaries be offered a choice between ICF/MR and waiver services. Nevertheless, the project has enabled about 57 persons to move from ICFs/MR to the waiver while maintaining budget neutrality.⁹⁹⁴

The second initiative, called FlexCare, is a three-year demonstration project initiated by the Utah Department of Health in April 2000 to develop experience in transitioning nursing facility residents to home- and community-based settings with individualized case management and flexible services. The program also serves persons at risk of nursing facility placement. As of October 2001, 145 persons were enrolled in the project; of those who moved, 62 percent transitioned to assisted living facilities and only 14 percent returned home.⁹⁹⁵

Beginning in January 2001, under a grant from the Center for Health Care Strategies, Inc., the Utah DHCF carried out a Nursing Facility Consumer Education and Assessment Process to inform nursing facility residents about the long-term care services available in other settings.⁹⁹⁶ This project is often cited as a model for other states.⁹⁹⁷ The project first conducted education outreach to nursing facility residents, then conducted comprehensive needs assessments of interested residents to determine whether the person had a reasonable potential to move to the community. Teams composed of representatives of the local Area Agencies on Aging, a local health department, and six Independent Living Centers (ILCs) were engaged to conduct the educational outreach, and two-member clinical teams from the AAAs were contracted to perform the assessments. Local ILCs were to serve as consultants to the clinical teams to contribute their expertise in the needs of persons with disabilities and the resources available to meet those needs. However, in most cases, the clinical teams failed to invite the ILCs to participate, and in general the project evaluation found that the project was unsuccessful in bringing together project teams that could share knowledge and expertise about the range of available local services for people of all ages. Instead, "the majority of project teams split up along traditional lines and oriented themselves to the subgroups that each team member was most familiar with," that is, elders or young adults with disabilities.⁹⁹⁸

The education phase of the project reached 995 persons, representing 19.4 percent of the persons who lived in the target facilities. The teams held group education sessions in the nursing facilities and invited the attendees to meet individually if they wanted to continue to explore community options. People who wished to continue the process were referred to the clinical teams for needs assessments. The assessment was conducted without reference to available services, and an analysis of available community services was then conducted to identify resources that matched the person's needs. Of the 995 persons who participated in the group education sessions, 181 requested follow-up individual interviews and 152 requested a needs assessment; of those persons, 135 were actually assessed. The teams concluded that 63 of the 135 had a reasonable potential for transition to the community, and the remaining 72 were determined to need continued institutionalization, "due primarily to complex physical and/or behavioral health conditions that could not adequately be addressed within the infrastructure available."⁹⁹⁹ As of January 2002, a total of 30 persons of the original 995 had moved to noninstitutional settings; half transitioned to Medicaid home- and community-based services and the other half made their own arrangements. The Center for Health Care Strategies, Inc., (CHCS) reported that most of the persons who made their own arrangements had lived in the nursing facilities for short stays only.

At its outset, the project had an advantage: The director of the state Department of Health had emphasized to the nursing facility industry the need to communicate with nursing facility residents about alternatives to institutionalization. By the time the project began, "the Department had worked through many of the issues of authority and access to nursing facility residents."¹⁰⁰⁰ However, the study shows how formidable the barriers to movement from nursing facilities can be. Attendance of nursing facility residents at the group meetings varied with the efforts of the education teams and facility staff. The teams tended to be conservative in their assessments of individuals' potential for transition. The study showed that significantly more than the allotted eight hours was needed for assessment and analysis of available options. The study confirmed that alternative home- and community-based services do not exist for many persons in nursing facilities, including people with significant behavioral disorders, persons with substance abuse problems, and people who need frequently skilled nursing intervention. Lack of affordable, accessible housing was also found to be a huge barrier.¹⁰⁰¹

Although the study as designed did not reach most nursing facility residents who under the Olmstead standard have a right to services outside the institution because it assessed only those persons who affirmatively expressed a desire to move, it provides valuable insight into the barriers to movement from nursing facilities. In the meantime, advocates report that such progress as has been made in moving people out of nursing facilities is largely due to the work of ILCs that manage to patch together community services for people whom they advocate.¹⁰⁰²

38. VERMONT

(a) THE PLANNING PROCESS

In June 2002, state law established an Olmstead advisory commission (Senate Bill 224, signed by the governor on June 13, 2002). The commission is situated in the Agency of Human Services. The legislation requires the advisory commission to submit a statute report by January 1 of each year to the governor and the legislature.¹⁰⁰³ The National Council of State Legislatures reported in early 2002 that the Office of Civil Rights has advised state officials that they are in compliance with Olmstead standards.¹⁰⁰⁴

(b) PROGRESS IN COMMUNITY INTEGRATION

Vermont has made significant progress in community integration of people with disabilities. It was the second state in the union to eliminate state institutions for people with developmental disabilities with the closure of the Brandon Training School in 1993. In 2000, 42 persons with developmental disabilities remained in nursing facilities; this number has fallen steadily since 1990, when 89 persons with developmental disabilities lived in such facilities.¹⁰⁰⁵

Since the closure of Brandon, Vermont has continued to pursue the goal of increasing community integration by reducing the size of community residential settings, expanding supported employment (Vermont ranks fourth in the nation in the rate of people with developmental disabilities in community-integrated employment), and phasing out group homes in favor of more normal settings, such as supervised apartments, companion homes, and adult foster homes. From 1993 to 1999, the number of persons in supervised apartments increased by 30 percent and the number of persons in developmental homes increased by more than 80 percent, with corresponding decreases in the number of persons living in staffed group homes and small ICFs/MR.¹⁰⁰⁶

Vermont's community service system is unusual in that the "developmental home," which may be either a home in which a person with disabilities lives with a companion or an adult foster home in which the person lives in a pre-existing household, is its primary service model. Benefits of that model include tax-free payments to foster families, which substantially increase the value of the income to host families, and the benefit to persons with disabilities of the social networks of the host family.¹⁰⁰⁷

The state also uses its home- and community-based waiver to provide services called "flexible supports," a service category approved by CMS in 1998, which includes personal support in the home and community, transportation, therapies, crisis services, environmental modifications and equipment, and any support other than service coordination and supported employment included in the person's plan of care.¹⁰⁰⁸ The state also has a system of cash payments to families.¹⁰⁰⁹ Apart from the nursing facility residents, no Vermonter with developmental disabilities lives in a setting of more than six persons, and the largest group settings for people with developmental disabilities are two private ICFs/MR of six persons apiece. The average size of a community residence is 1.2 persons.¹⁰¹⁰

Vermont's use of flexible, individualized services in normal settings is highly cost-effective, and the state does not have lengthy waiting lists. An independent study of Vermont's use of home- and community-based waiver services concluded that

As a result of Vermont's early and continued commitment to community service development and maximizing Medicaid federal participation (FFP) in its services, its commitment to the identification and expansion of cost-effective models of service, and its development and financing of family support, Vermont is able to maintain a system that has been generally able to respond to the demands for services placed on it.¹⁰¹¹

Vermont monitors the number of persons with developmental disabilities who are incarcerated in correctional settings. Six such persons were identified in 1998.¹⁰¹²

At the end of 2001, none of the residents of Vermont's state psychiatric hospital had been there for more than a year, and a total of only 55 persons resided at the hospital.¹⁰¹³ Vermont's profile in nursing facility use is more or less average compared with the rest of the nation. The 3,293 nursing facility residents make it 18th in the nation in nursing facility use when measured as a percentage of the nation as a whole, and both the number of residents and number of beds were fairly stable from 1996 to 2001,¹⁰¹⁴ whereas Medicaid expenditures increased by only 7 percent during this period.¹⁰¹⁵

(c) SYSTEMS CHANGE ACTIVITIES

Vermont has a Real Choice Systems Change grant of $2,000,000 to improve integration and consistency of services across agencies for elders, persons with physical disabilities, and persons with mental illness and developmental disabilities. The broad goals of the project are to enhance choice, consumer control, and coordination of services.¹⁰¹⁶

In addition, the Vermont Department of Aging has a grant to develop rural, affordable assisted living from the Robert Wood Johnson Foundation. The initiative is a response to the finding that frail rural elders are more likely than their urban counterparts to enter nursing facilities. The Department is working in concert with the Vermont Housing Finance Agency and the Department of Prevention, Assistance, Transition and Health Access to support four demonstrations in assisted living, provide technical assistance to other projects and community groups, change policies and practices to encourage the development of high-quality assisted living services, and identify and plan for the quantity of assisted living services that will be needed to support the aging generation of baby boomers.¹⁰¹⁷

39. VIRGINIA

(a) THE PLANNING PROCESS

Virginia is one of the last states to begin an Olmstead planning process. The mandate to create a plan came from the state legislature, which in the 2002 Appropriations Act charged the commissioner of the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) to convene a stakeholder task force to implement the recommendations of Olmstead. The task force was to submit its final recommendations to the governor, the chair of the House Appropriations and Senate Finance Committees, and the chair of the Joint Commission on Health Care by August 31, 2003. In June 2002, DMHMRSAS met with representatives of four other state agencies to identify stakeholders to participate in the task force and assign responsibilities for administrative support, funding for speakers, travel, loop service, interpreters, Web site assistance, and alternative formatting.¹⁰¹⁸

The task force, chaired by the Virginia Secretary of Health and Human Resources, held its first meeting on July 31, 2002; the meeting was marred by complaints about the lack of accessibility of the meeting site.¹⁰¹⁹ Representatives of the Office of Civil Rights of the United States Department of Health and Human Services attended the meeting and presented OCR's understanding of the elements of a comprehensive Olmstead plan.¹⁰²⁰ The task force was organized by disability populations with a lead agency, which was to develop population-specific reports assigned to each, and Issues Teams, which were to examine broad issues that cut across populations. An impressive range of population groups were proposed, including mental illness (adult), emotional disturbance (children), mental retardation, substance abuse, Alzheimer's/dementia, autism, physical disabilities, developmental disabilities, HIV/AIDS, brain injuries, deafness and hard of hearing, and blindness.¹⁰²¹ On the basis of stakeholders' identification of cross-cutting issues, seven issues teams were organized in the areas of accountability; educating the public; consumers and families; employment; qualified providers; housing; prevention and transition services; and waivers.¹⁰²²

By October 2002, when the task force chair reported to the House Appropriations Committee on the status of the planning project, 14 state agencies were participating or providing resources to the task force, including the Departments of Aging, Health, Housing and Community Development, Medical Assistance, and Rehabilitative Services and the Housing Development Authority.¹⁰²³ The task force held a public comment session on November 4, 2002, and received comment from five remote sites, all state institutions. It is not surprising, therefore, that many of the public comments were from parents of people with disabilities who were institutionalized at those facilities and satisfied with their services there.¹⁰²⁴

(b) PROGRESS IN COMMUNITY INTEGRATION

Virginia is a heavily institutional state. In 2000, more than 3,000 persons with developmental disabilities lived in large congregate settings: 1,744 in state institutions, 1,272 in nursing facilities, and 132 in a large private ICF/MR. Institutional populations decreased by less than 20 percent during the previous decade: Almost all the reduction came from state institutions, whereas the number of persons in nursing facilities and private ICFs/MR remained stable or actually increased.¹⁰²⁵

Virginia's nursing facility population of 26,875 is average (24th) among the states when measured as a percentage of the total population age 65 and older. The number of residents and the number of beds remained fairly stable from 1996 to 2001.¹⁰²⁶

(c) SYSTEMS CHANGE ACTIVITIES

In 2000, the DMHMRSAS published a plan to restructure mental health services. The basic concept of the plan was to fund improvements in community mental health services through the sale of excess state facility land and buildings. Trust fund legislation was enacted to preserve income from the sale of these properties for the continued use of the mental health system.¹⁰²⁷ Local community boards will decide how to use the funds to develop and purchase mental health services, including both community services and inpatient care. The plan calls for the transfer of inpatient services from state-operated facilities to community hospitals. State-operated services will emphasize long-term inpatient services. Elders living in state psychiatric facilities are to be transitioned to new Medicaid-reimbursed "gero-psychiatric residential services."¹⁰²⁸ State hospital beds would be reduced from about 1,800 to about 1,200 over a period of six years. Although the use of trust fund legislation to preserve the assets of outdated state hospitals for the mental health system is positive and, if implemented, the plan will fund the creation of new community services, its principal effect on the institutional population will be privatization and the transfer of older state institutional residents to specialized nursing facilities.

At the end of 2001, 771 persons housed in state psychiatric facilities had been there for more than a year.¹⁰²⁹ Nursing facility beds increased by almost 12 percent from 1992 to 2000,¹⁰³⁰ and Medicaid spending on nursing facilities grew by 34 percent.¹⁰³¹

40. WEST VIRGINIA

(a) THE PLANNING PROCESS

In September 2000, Governor Underwood issued an executive order that an Olmstead task force be created no later than June 30, 2001 to do the following:

1. Identify all institutionalized persons with disabilities and those at risk of institutionalization who "desire and would benefit from an appropriate community-placement setting."
2. Identify needed services and costs to provide these community placements.
3. Develop a procedure to prevent unnecessary admission to institutions.
4. Recommend the best procedure for resolving complaints from people with disabilities regarding community integration.
5. Recommend to the governor changes in budgets, funding plans, and regulations and other methods to finance community-integrated services.
6. Recommend to the governor an Implementation Plan to facilitate the timely transfer of institutionalized persons who "desire and can benefit" from community placement.¹⁰³²

The governor appointed a task force consisting of members of the Senate, the House of Delegates, people with disabilities, advocacy groups, providers, and representatives of state executive departments. The task force formed subcommittees on Identification, Grievance, Prevention and Services and Costs. Governor Wise extended the deadline for completion of the plan by executive order to December 31, 2001, of Governor Wise, and the completed document, both a report to the governor and an Olmstead state plan, was submitted on December 17, 2001.¹⁰³³

An unusual feature of task force membership was the provision that representatives of the U.S. Department of Housing and Urban Development (HUD) would be appointed to the task force provided they agreed to serve.¹⁰³⁴ A representative of HUD did in fact serve on the Services and Costs subcommittee of the task force.¹⁰³⁵

The report to the governor of December 2001 is basically a plan to plan. It contains no numerical goals or specific targets either for deinstitutionalization or the creation of community services. As a general outcome, the report proposes that "people who choose to transition" (emphasis added) from congregate settings, rather than those who are unnecessarily institutionalized, will have the opportunity to do so.¹⁰³⁶ The other general outcomes proposed for the plan focus on the changes in state law, policy, licensing, and certification changes that will be necessary to overcome the remaining institutional bias in the service system. Although those goals are modest, they are realistic, clear-sighted, and necessary.¹⁰³⁷ Some of the specific policy changes envisioned by the planners include consumer control of personal assistance; elimination of the "home-bound" requirement; 24-hour, seven-day backup support; changes in Certificate of Need requirements; adding flexibility to the definition of qualified service provider; and opening the system to more providers.¹⁰³⁸

The plan includes a partial implementation budget, but it includes only those funds that will be required for infrastructure changes. The planners recognized that costs for transitioning or diverting individuals from institutions would need to be added to the total cost of Olmstead implementation.¹⁰³⁹

A component of the West Virginia plan that deserves to be replicated by other states is the infrastructure for Olmstead implementation and oversight for which it provides and budgets. That infrastructure includes an executive staff member on loan to serve as Olmstead director; an administrative assistant; office support; release time for agency and provider staff to serve on the Olmstead task force; travel and other compensation for consumers to serve on the task force; and a toll-free line answered by the Olmstead director and assistant as the "one-stop" point for all Olmstead-related information, including community service referrals, Olmstead complaints, mediation, and grievance procedures. Among the ambitious roles for the director is that of "assisting State agencies to ensure that their budget requests include sufficient funding to allow the State to meet its ADA obligations under the Olmstead decision."¹⁰⁴⁰ Equally promising are the state's plans to hire four regional Olmstead specialists to respond to local inquiries, conduct training, maintain regional resource databases, and assist in transition and diversion activities and grievance procedures.¹⁰⁴¹

Another promising component of the West Virginia plan is its proposed procedure for resolving Olmstead-related complaints. An Olmstead complaint is "any potential service gap that could result in the consumer being returned to or potentially entering a more restrictive placement than that which he/she currently inhabits," including a service gap that "prevents an individual from moving from an institutional or segregated setting to a community-based setting of his/her choice."¹⁰⁴² The Olmstead director will receive complaints, acknowledge them within 24 hours, direct them to the appropriate agency, and ensure that they are resolved within 90 days of receipt. The complaint resolution process included provision for appeal and fair hearing.¹⁰⁴³

In February 2001, the West Virginia Center for Healthcare Policy and Research and the West Virginia Health Care Authority submitted a report recommending changes in the state's long-term care system.¹⁰⁴⁴ The report found significant barriers to community integration in long-term care services, including separate entry points for nursing facility services and community services, respectively, conflicts of interest on the part of providers who determine eligibility for services and also provide the services, lack of public funding for nonmedical residential services, a certificate of need requirement for long-term care services that treats providers inequitably, and lack of coordination of services. The state's Olmstead plan does not specifically address many of these problems nor state how they should be resolved; indeed, the Olmstead plan does not acknowledge the earlier report.

It was not until July 2002 that Governor Wise responded formally to the Olmstead report submitted to him in December 2001. By then, shortfalls in state funding available for plan implementation had become apparent. In a memorandum to Department of Health and Human Resources (DHHR) Secretary Nusbaum, Governor Wise stated that it was his intent "to implement many of the recommendations consistent with the availability of resources" (emphasis added). He directed Secretary Nusbaum to assign responsibility to a staff person with DHHR "to coordinate the elements of Olmstead recommendations and develop a plan for the effective implementation of the requirements of Olmstead v. L.C," and instructed the secretary that he must find the necessary resources for plan implementation from within DHHR's current budget.¹⁰⁴⁵

The December 2001 report committed the state to review the existing Medicaid plan and the two existing state waivers and recommend changes that promote successful community living.¹⁰⁴⁶ Although a few such changes have been made, significant limitations were placed on the amount and duration of waiver services in early 2002,¹⁰⁴⁷ and most of these have not been reversed. On the positive side, in November 2002, changes in the Aged and Disabled waiver program were announced, including an end to the requirement that waiver recipients have "informal sources of support" available to them, which waiver services would supplement. Beginning in 2003, homemaker aides will be able to take recipients on community activities, reversing a limitation in services imposed in early 2002.¹⁰⁴⁸

(b) PROGRESS IN COMMUNITY INTEGRATION

Of all southern states, West Virginia has progressed farthest in community integration. In 1998, as a result of the court orders in Medley v. Ginsberg, West Virginia eliminated state institutions for persons with developmental disabilities. In 2000, only 99 persons with developmental disabilities lived in general nursing facilities (40) or large private ICFs/MR (59)-a six-fold reduction since 1990. The number of persons with developmental disabilities in nursing facilities has continued to decline while the number of persons in a large private ICF/MR has remained relatively stable.¹⁰⁴⁹ Partly as a consequence of its decision to use the ICF/MR model to implement the Medley decree, West Virginia lags behind other states in its use of the home- and community-based waiver.¹⁰⁵⁰

The lawsuit, Benjamin H. v. Ohl, filed on behalf of persons with developmental disabilities waiting for home- and community-based waiver services in the late 1990s, has had a significant impact on developmental disability services. As a result of the lawsuit and a court order requiring that home- and community-based waiver services be provided with reasonable promptness not to exceed 90 days, the state expanded its waiver and reduced the length of waiting lists to 90 days.¹⁰⁵¹ Because of the state's difficulty complying with the court order (reportedly, about 100 people remain on DHHR waiting lists for waiver services), the parties signed a Joint Stipulation on August 29, 2002, agreeing that the district court should retain jurisdiction of the case for enforcement purposes and that the parties will attempt to resolve the compliance issues by agreement.¹⁰⁵²

Between 1990 and 1998, the state reduced the population of its state mental health facilities from 624 to 240 residents, most in forensic or acute care units.¹⁰⁵³ At the end of 2001, only 48 residents of state psychiatric hospitals had been there for more than a year.¹⁰⁵⁴ The state operates five long-term care facilities with a total of 536 beds; one facility is dedicated to tuberculosis care.¹⁰⁵⁵ In 2001, West Virginia had 10,304 nursing facility residents, which placed near the middle (22nd) of the states in nursing facility use when measured as a percentage of the state's population as a whole age 65 and older. The number of residents declined significantly between 1996 and 2001, by 11.5 percent, while the number of beds actually increased by 4.1 percent.¹⁰⁵⁶

In 2002, the West Virginia DHHR invited applications for short-term start-up funding to assist persons who are institutionalized in state facilities, primary psychiatric hospitals, to move to the community. Funds can be used for temporary rental assistance, home renovations, household goods, training and orientation to caregivers, and other initial service costs not otherwise available. The first set of applications, received in May, resulted in grants for eight persons, with two denials. The process was reintroduced in September 2002.¹⁰⁵⁷

(c) SYSTEMS CHANGE ACTIVITIES

West Virginia has a Nursing Facility Transition grant to assist nursing facility residents who wish to move to the community. Grant activities include conducting 100 assessments of nursing facility residents, training transition teams, identifying people who wish to move by educational and outreach activities, and creating a person-centered discharge and referral instrument.¹⁰⁵⁸

41. WISCONSIN

(a) THE PLANNING PROCESS

In September 2000, in response to systemwide complaints filed with the HHS OCR and discussions with OCR, the Wisconsin Department of Health and Family Services (DHFS) designated the Wisconsin Council on Long Term Care as the state's Olmstead planning body.¹⁰⁵⁹ A 47-member ADA Title II Advisory Committee with broad representation from the aging, developmental disabilities, mental illness, veterans, and independent living movements was appointed and began meeting in January 2001. Consumers, providers, unions, county governments, and the Area Agencies on Aging were among the constituencies represented on the advisory committee. The organizations represented ranged from the AARP to ADAPT and People First. A representative of the Regional Office of Civil Rights attended the first meeting and subsequent meetings.¹⁰⁶⁰

In the second meeting of the advisory committee, the group voted to focus first on people living in institutions who did not want to be there and only after that to address the issues of community waiting lists. It created four workgroups: Data, Legislation and Budget, Systems Design, and Client Evaluation.¹⁰⁶¹ Although advocates state they would have preferred the ADA Title II Advisory Committee to report directly to the governor, the Council on Long Term Care voted to keep the advisory committee in house.¹⁰⁶² The weakness of this approach is that the council, a unit within the DHFS, has limited ability to address barriers to community living, such as housing and transportation, that are beyond its jurisdiction.

Barriers to Olmstead planning soon surfaced in the workgroup discussions. The Client Evaluation and Assessment Workgroup learned that existing assessment tools were inadequate to identify persons who could handle and benefit from community living. Many of the currently used assessment tools focus on availability of community support rather than the appropriateness of community living.¹⁰⁶³ The Research and Data Workgroup found that existing data were inadequate to estimate the number of people in nursing homes who wanted to move to the community or were appropriate for community living. The Consumer Task Force found it difficult to get adequate representation of consumers.¹⁰⁶⁴

The plan for Phase I of the state's Olmstead planning efforts was released in January 2002. The plan is designed to carry out six objectives:

1. Ensure that consumer, families, and guardians are empowered to make informed choices about where to live.
2. Develop and apply consistent assessment and decisionmaking processes.
3. Develop capacity for a full range of long-term care services, including housing and workforce.
4. Provide sufficient funding.
5. Develop effective safeguards to ensure that Title II rights and preference of consumers are taken into account as much as possible in every phase of service delivery.
6. Exercise oversight according to Olmstead and Executive Order criteria.¹⁰⁶⁵

Although initial plan activities focus on offering institutionalized persons a choice of where to live, the plan's funding goal, Objective 4, as stated in the plan's table of contents, projects that by July 1, 2007, all persons "who have not made an informed choice to stay in the institution" (emphasis added) and who "could be served appropriately and cost effectively in the community" will be relocated from institutions. Given the size of Wisconsin's institutional populations, this is perhaps the most ambitious goal set forth in any state Olmstead plan to date; significantly, the goal is stated in appropriate Olmstead language. However, it is not developed in the body of the plan, and the proposed DHFS budget for 2003-2005 does not acknowledge it nor reflect even a token effort to implement the goal. A number of overlapping choice- and assessment-related activities are set forth in the plan. They include conducting a statistical sample of nursing facility residents to learn how many are interested in living somewhere else; restoring an independent advocacy program to assist consumers in the Family Care program (see infra, Systems Change Activities); amending state law to comply with Title II of the ADA and Olmstead; developing a model for arranging community services for hospitalized persons prior to discharge; and conducting mandatory pre-admission screening for people being admitted to institutions.¹⁰⁶⁶

The plan's capacity-building strategies are extremely general and constitute little more than a plan to plan. They include calls for coordination with state housing, transportation, workforce, public instruction, and vocational rehabilitation agencies, although these agencies were not at the table during the planning process.

(b) PROGRESS IN COMMUNITY INTEGRATION

In developmental disabilities, Wisconsin was a heavily institutional state at the beginning of the 1990s and remained so 10 years later, although institutional populations overall fell from 5,660 to 3,342. Wisconsin is unusual among the states in that more persons with developmental disabilities are institutionalized in private ICFs/MR (1,936 in 2000) than in other types of institutions, and the ICF/MR population has remained stable during the past 10 years. From 1990 to 2000, the population of Wisconsin's state institutions was virtually halved and was 899 in 2000; the number of persons in general nursing facilities fell even more dramatically during this period, from 1,734 to 471.¹⁰⁶⁷

Despite an active campaign by advocates and self-advocates to close at least two of Wisconsin's three state institutions within five years (People First of Wisconsin has called for closure of all three institutions within 10 years),¹⁰⁶⁸ the state's goals for future deinstitutionalization of these persons are modest. The DHFS budget request released in September 2002 envisions reducing population of the three state institutions to 715 by the end of FY 2005. To accomplish this, the state proposes to raise the maximum reimbursement rate for community services to $325 a day to accommodate people with more significant disabilities and reports that many institutional residents could be supported much less expensively in the community, but their guardians oppose community placement.¹⁰⁶⁹

Dane County, Wisconsin, was the birthplace of the model of community support teams pioneered by Dr. Leonard Stein, and the state now has 88 Assertive Community Treatment (ACT) programs serving 5,000 persons throughout the state. However, at the end of 2001, 200 persons institutionalized in state psychiatric facilities had been there for more than one year.¹⁰⁷⁰

Consistent with its highly institutional profile in other areas, Wisconsin ranks eighth among the states in nursing facility use when measured as a percentage of the population as a whole age 65 and older. However, the state ranked almost equally high in reduction of nursing facility population from 1996 to 2001 (by 11.3 percent), although bed reduction was only about average (14.6 percent reduction).¹⁰⁷¹

(c) SYSTEMS CHANGE ACTIVITIES

Wisconsin began an extensive three-part strategic planning process in 1995 to redesign its long-term care systems for elders and persons with developmental and physical disabilities, people with mental illness and substance abuse, and children with significant disabilities. The principles on which the system redesign effort is based include consumer choice, improved access, cost-effectiveness, and quality measured in terms of consumer outcomes.

The most highly developed of the system redesign efforts is Family Care, created by Act 9 of 1999. Family Care is a managed long-term care program that combines state, federal, and local funding for community and institutional long-term care into a single capitated benefit, with the goal of eliminating institutional bias and streamlining fragmented and overlapping funding streams for services. An Aging and Disability Resource Center in each county piloting the Family Care model serves as a single point of entry for information, pre-admission counseling, and intake for long-term care programs. A Care Management Organization (CMO) is responsible for enrollment, assessment, care planning, and service delivery through a network of providers.¹⁰⁷² All CMOs are required to have self-directed services options in place by January 2003. By 2002, only five counties were piloting Family Care, although the state plans to expand the program gradually over the next 10 years.

Family Care is funded by a combination Section 1915 b/c waiver. In approving the waiver, the Centers for Medicare and Medicaid Services asked the state to avoid the potential for conflict of interest that would arise if the same entity (the county, in this case) were to be responsible for eligibility determination, enrollment, and service delivery. In response, the state introduced an independent enrollment broker.¹⁰⁷³

An evaluation of the Family Care program by the Lewin Group, published in August 2001, found that waiting lists have virtually been eliminated in three of the five pilot counties and that the other two were well on their way. Self-directed service options were available only on a limited basis in three of the five counties. Counties expressed concern that the capitation rates did not adequately address the extensive administrative and information technology costs associated with Family Care. The evaluators concluded that it was too early in the process of implementation to determine whether reductions in nursing facility population could be attributed to the program.¹⁰⁷⁴

DHFS is in the early stage of piloting a Mental Health/Substance Abuse Redesign model, the goal of which is to provide comprehensive consumer-based services in a managed care system. The managed care system has yet to be put in place, although some initial development of the model has occurred.¹⁰⁷⁵

42. WYOMING

(a) THE PLANNING PROCESS

Wyoming has developed an outline of an Olmstead plan using the National Association of Protection and Advocacy Association's Temple of Key Elements of an Olmstead plan. The outline therefore includes participation of key stakeholders in the development of the plan; the needs assessment process; the development of new community services and support infrastructure; transition services to prepare individuals for a change in placement; data collection individualized and tied to an individual program plan; outcomes measurement and target dates; quality assurance; resource development; and revision and updating. The plan contains a separate outline for each of four state agencies affected by the planning process: the Aging Division, the Developmental Disabilities Division, the Developmental Disabilities Division's Acquired Brain Injury program, and the Mental Health Division.¹⁰⁷⁶

The plan is basically a description of the existing service system. It does not set timelines or target dates. It does not identify how many persons are on waiting lists for community services or how many people currently are institutionalized who are eligible for services in community-based settings (although it does state that 4 of the 113 residents of Wyoming State Training School have been recommended for community placement and are slated to move). It also does not examine the adequacy of the state's current reviews and assessment processes for reviewing institutional residents, nor does it establish similar procedures for persons who may be at risk of institutionalization.

The draft plan does not ensure that all institutional residents will be assessed to determine whether they can handle and benefit from community living. For example, the developmental disabilities section of the plan states that the agency will "continue monitoring of the progress of residents at the [Wyoming State Training School] and watch for possible candidates for transition."¹⁰⁷⁷ The Aging Services section of the plan states that assessing nursing facility residents' potential for return to the community and ensuring that choice has been offered will be the responsibility of the provider and that the provider will validate Olmstead compliance to the state. Oversight will be accomplished via a Memorandum of Understanding between the Aging Division and the Office of Health Quality, the state survey system.¹⁰⁷⁸ However, the plan does not explain how compliance will be ensured. The draft acknowledges, "[I]n many cases, there may not be a service network that can support a nursing home client in the community even though they may wish to live in a more integrated environment,"¹⁰⁷⁹ but the plan does not squarely address how the gaps in needed services will be filled except to suggest that obtaining Medicaid funding for assisted living and securing enough additional waiver slots to eliminate the waiting list for home- and community-based waiver services should be considered as options.¹⁰⁸⁰ According to the plan, the state recently had revised its Assisted Living Facility (ALF) regulations to allow residents of these facilities to obtain skilled nursing services and continue to live in the facility as long as the nursing services were obtained from an agency other than the ALF provider. The state reported that this regulatory change was undertaken to comply with Olmstead.¹⁰⁸¹

The plan contains only some highly general statements about the data systems and quality assurance mechanisms the state intends to adopt. For example, the Mental Health Division section of the plan states, "We will be developing ways to measure our progress on developing electronic systems to identify people who are institutionalized and are ready to move to a less restrictive placement"¹⁰⁸² without specifying how people who are unnecessarily institutionalized will be identified, how their needs and ability to benefit from community living will be assessed, who will do the assessments, or even whether all institutionalized persons would be considered.

The Acquired Brain Injury section of the plan is more thorough than other sections. It acknowledges the lack of information about the needs of persons with acquired brain injury in Wyoming and sets specific action steps and timelines for acquiring this information. It identifies barriers to service delivery and identifies long-term rehabilitation and community support for adults with severe and profound needs as the most critical gap in the system.

Almost simultaneously with the development of its draft Olmstead plan, Wyoming developed a plan for its mental health system, the Wyoming Public Mental Health System of Care Plan, which contains much more concrete and specific action steps. Unaccountably, there is little integration between this plan and the Olmstead plan.

For example, the Mental Health Division's Olmstead plan states,

We have in development the building of a "transition profile" which will detail the community readiness of a person, which would be updated at every 90-day clinical review. As a part of the profiling assessment process, there will need to be developed, in the next six months, a form that would reflect the assessment of the readiness for the change in placement. This would essentially be a transition plan, which both the hospital and the residential providers for adults, and children and adolescents, would use. In year 1, the WSH would implement the process; in year 2, our contractors for extended psychiatric care would implement this process, and in year 3, all other contractors would implement the process.¹⁰⁸³

However, the Public Mental Health plan does not mention this "transition profile."

The Public Mental Health plan was "unveiled" in November 2000 and updated in 2001. It does not contain any goals or action steps specific to deinstitutionalization. However, it does identify gaps in community service systems and sets forth goals and action steps to improve the effectiveness of community services, for example, "to achieve public health modeled, integrated community-based services by CMHCs [community mental health centers]," which includes such action steps as incorporating Integrated Services language into contracts, negotiating methodology, and timelines for achieving integrated services with other agencies, training, and multiagency coordination.¹⁰⁸⁴

(b) PROGRESS IN COMMUNITY INTEGRATION

As the result of a lawsuit, Weston v. Wyoming, brought in the late 1980s by the state Protection and Advocacy system to create community services for persons with significant developmental disabilities, the population of Wyoming's only developmental disabilities institution fell from 311 in 1990 to 123 in 2000 and was 110 at the time the state's Olmstead plan was developed. In 2000, 40 persons with developmental disabilities lived in nursing facilities; this number had remained stable over the course of the previous decade. No one lived in private ICFs/MR of any size. During Weston implementation, the number of persons in small residential living arrangements in Wyoming increased dramatically, from 140 to 621.¹⁰⁸⁵

The daily census at the state psychiatric facility, the Wyoming State Hospital, fell from 182 in 1992 to 63 in 2000, although its official capacity was 104.¹⁰⁸⁶ The state legislature approved a plan to demolish old buildings at the facility and construct a new 40-bed facility on the same campus.¹⁰⁸⁷ Funding for community services to targeted mental health populations has doubled since 1996.¹⁰⁸⁸

A lawsuit filed in 1994 by the Wyoming Protection and Advocacy System and the Wyoming Alliance for the Mentally Ill (WYAMI), Chris S. v. Geringer, challenging conditions at Wyoming State Hospital and insufficient community-based services for adults, children, and adolescents, led to an agreement in 1995 to create a structure and a process in which advocates could participate in ongoing systems change. The structure, called the Partnership for the Resolution of Mental Health Issues in Wyoming, includes the director of the Department of Health, the executive director of the Protection and Advocacy System, a representative of WYAMI, and the administrator of the Division of Behavioral Health. Lawyers for the plaintiffs participate, as does a community mental health center director and ex-officio members from the Departments of Education and Family Services. A paid facilitator from the University of Iowa guides the discussion. The purpose of the Partnership is to monitor, discuss, and recommend systems changes that will bring closure to the lawsuit. Among the changes pursued by the partnership are services based on CASSP [Child and Adolescent Service System] principles for children and adolescents and a system of community support based on recovery principles.¹⁰⁸⁹

Chapter VI

In-Depth Analysis of Olmstead Implementation in Ten States

1. INTRODUCTION

This chapter analyzes the experience of Olmstead planning and implementation in 10 states: Arizona, Florida, Illinois, Michigan, Mississippi, Nevada, New Hampshire, New York, Texas, and Washington. The states were selected to offer a representative sample both geographically and demographically. Before selecting the states, we compiled and analyzed census data as well as data on the number of persons in institutions, public psychiatric hospitals, and nursing facilities to identify a cross-section of states that would represent the diversity in the nation of population, size, and rates of institutionalization. The sample includes one New England state, one Mid-Atlantic state, two Midwestern states, two Northwestern states, two Southeastern states, and two Southwestern states.

(a) SELECTION CRITERIA

We based our selection on the following criteria for the sample as a whole:

• The sample should be representative geographically and demographically, that is, it should include large states, small states, states with significant urban populations, and states with significant rural populations.
• The sample should be representative in terms of overall ethnic diversity, that is, it should include states with and without significant populations of African-Americans, Latinos, and other minorities.
• The sample should represent states with diverse rates of institutionalization, both for particular disabilities and for all types of disability.
• The sample should represent a wide spectrum of state experience with community integration of people with disabilities.

(b) RATIONALE FOR SELECTION OF THE 10 STATES

Northwestern States

Washington is a medium-size state with higher percentages of white residents, Native American residents, and Asian residents than the nation as a whole. From 1988 to 1998, the number of persons with developmental disabilities in large congregate settings decreased from 3,176 to 2,388, whereas the number of persons in small community residential settings increased from 1,511 to 8,764, a nearly six-fold gain. The number of persons with developmental disabilities in nursing facilities increased.

Nevada is a small but fast-growing state, primarily urban. Its Latino and Native American populations are larger and its African-American population smaller than the United States as a whole. In MR/DD services between 1988 and 1998 the number of persons in large congregate settings (state institutions, private institutions, and nursing facilities) actually increased, and Nevada pursued a policy of expanding ICF/MR services at a time when most states were expanding home- and community-based waiver services. Nevada had the lowest rate of nursing facility placement of persons 65 and older in the United States¹⁰⁹⁰ until the legislature approved 1,800 new nursing facility beds in 1997.

Southwestern States

Arizona is a small, largely urban state with a large Latino minority. In MR/DD services, Arizona more than doubled the number of persons served in community residential services between 1988 and 1998 and reduced the population of state institutions by more than half. Of the 19,515 elderly and physically disabled persons enrolled in Arizona's Medicaid-funded long-term care system, about half (9,953) live in nursing facilities. The average daily census of the Arizona State Hospital for persons with psychiatric disabilities was 157 in 1999.

Texas is a large state with a high percentage of Latinos and high rates of institutionalization. In MR/DD services, the percentage of persons in institutions declined by only 25 percent between 1988 and 1998, from 13,851 to 10,452. More than 1,200 children, some of them only a few months old, are still living in institutions. In 1998, the state served 7,634 persons with developmental disabilities in small community residential settings, significantly fewer than the number in large congregate settings, although this is certainly a significant increase from 1991, when the figure was zero. As of September 1, 2000, 66,200 Texans lived in nursing facilities, and the average daily census of state psychiatric institutions was 2,350.

Midwestern States

Illinois is a large, heavily urban state with a race and ethnic mix similar to that of the United States population as a whole. In sharp contrast to Michigan, the level of institutionalization is high.

Michigan is a large industrial state with a mix of urban and rural population, a slightly higher percentage of white residents than the national norm, and a high percentage of persons with disabilities living in the community. In the developmental disabilities field, state government played an innovative role in the transformation of services from the late 1960s, when more than 12,000 persons lived in state institutions, to the present, when fewer than 300 persons with developmental disabilities remain in state institutions. Michigan's system of cash grants to families is widely recognized as a successful model of preventing out-of-home placement for children. In mental health, the population of state institutions has declined from higher than 17,000 in state facilities in the mid-1960s to approximately 1,100 today. Since 1990, the state has closed 17 state mental health institutions.¹⁰⁹¹

Though Michigan's nursing facility population has remained constant for the past several years, the state does provide innovative, consumer-directed services to a large number of elders and persons with physical disabilities in two large Medicaid home and community services programs and several small state-funded programs. Approximately 14,400 persons receive services through the MI Choice Waiver for the Elderly and Disabled, which provides a range of home care agency-based services to people who would otherwise be eligible for nursing home care. The Medicaid Home Help program is funded through the Medicaid personal care option and covers personal care services using a consumer-directed model in which about 84 percent of all beneficiaries hire and fire individual workers directly, and 51 percent of all beneficiaries hire workers who are relatives. For Home Help, beneficiaries do not need to be functionally eligible for nursing home services. The program had an average monthly census of 37,200 people in fiscal year 2000. In 2001, the Michigan Department of Community Health (MDCH) created a Long-Term Care Initiative that coordinates all long-term care programs serving older persons and younger adults with physical disabilities, including the Medicaid MI Choice waiver and the Home Help program.¹⁰⁹²

Southeastern States

Mississippi is a poor, largely rural state with the highest percentage of African Americans among its population of any of the 50 states; only the District of Columbia is higher. Mississippi's Medicaid-funded services are heavily institutional. The state is last in the nation in the percentage of Medicaid long-term care funds devoted to community-based services (only 4.4 percent). Between 1988 and 1998, the number of persons with developmental disabilities living in large congregate facilities in Mississippi increased from 2,382 to 2,830. In 1998, the state served only 1,682 persons with developmental disabilities in small community residential settings, but this is certainly a significant increase from 1991, when the figure was zero. Mississippi offers few services for elders and persons with physical disabilities other than nursing facility care. The proportion of long-term care spending for the elderly for nursing facilities is the highest in the nation (98.6 percent), yet in 1997, the legislature approved 1,500 new nursing facility beds. Spending per elderly beneficiary for long-term care is the lowest in the nation ($3,593).

Florida is a large state with the largest percentage of elderly residents in the nation and a Latino population that is significantly larger than that of the United States as a whole. Institutional populations in Florida are large. There are currently seven state mental health facilities (one is scheduled to close soon) in which about 4,300 persons are served annually. Approximately 138,000 Floridians (roughly 5 percent of the population age 65 and older) live in nursing facilities.¹⁰⁹³ In 1998, 3,533 Floridians with developmental disabilities lived in large congregate settings, including state institutions, large private ICFs/MR, and nursing facilities. It was not until 1995 that the number of persons with developmental disabilities living in small community residences surpassed the number living in institutions.

Mid-Atlantic States

New York is a large state with a mix of urban and rural populations and differences in rates of institutionalization by type of disability. Its population is reasonably comparable to that of the nation as a whole in race and ethnic mix. New York has a fairly strong record of integrating people with developmental disabilities into community services but a weak record of serving people with psychiatric disabilities in the community.

New England States

New Hampshire is a small state with a high percentage of its population living in rural areas. By ethnicity, New Hampshire is 96 percent white. A high percentage (more than 90 percent) of persons with developmental disabilities are living in settings of 15 or fewer people. New Hampshire closed its single state institution for persons with developmental disabilities in 1991 and has adopted the self-determination model of services for persons with developmental disabilities throughout the state.

2. WASHINGTON

(a) STATE OF COMMUNITY SERVICES PRIOR TO DEVELOPMENT OF AN OLMSTEAD PLAN

Washington reflects national trends in both the use of institutions and the trend toward community services. In many categories, it has fallen squarely within the middle range of the states in terms of its rates of institutionalization and community integration. This means that, like the nation, Washington has made progress but still has a long way to go.

Overall, in 1997, 19,364 people participated in Washington's combined home- and community-based waiver programs for a rate of 3.45 people per 1,000.¹⁰⁹⁴ This rate exceeds the national mean of 2.1 people and is higher than all but 11 states. Washington, like most states, had a higher rate of participation in its ICFs/MR and nursing homes, at 4.23 people per 1,000. This was below the national mean of 6.51 people.¹⁰⁹⁵ Washington's per capita waiver spending in 1997-98 was also neither the nation's stingiest nor its most generous: $37.96, above the national average of $29.40.¹⁰⁹⁶ Washington reported three funded waiver programs in 2001. The vast majority of spending was under the MR/DD waiver ($227.3 million) and the Adults with Disabilities waiver ($287.7 million).¹⁰⁹⁷ A smaller program ($1.6 million) covers persons with AIDS.¹⁰⁹⁸ At $516.6 million, Washington's total waiver spending is fairly high, exceeding larger states, such as Ohio ($480 million) and Illinois ($348 million).¹⁰⁹⁹ Washington, unlike most states, has a larger Adults with Disabilities waiver program for people with physical disabilities than its MR/DD waiver program. In part, this is because Washington combines services for the elderly with disabilities under its Adults with Disabilities waiver instead of administering a separate aging waiver, but Washington still stands out as dedicating more funds to people with physical disabilities. By contrast, New York, with a waiver in excess of $2 billion, dedicates nearly all of it-$1.98 billion-to its MR/DD waiver, with only $26 million to its Adults with Disabilities waiver.¹¹⁰⁰ Of New Jersey's $326 million in waiver spending, nearly 72 percent-$234 million-is dedicated to the MR/DD waiver, with $58 million for adults with disabilities.¹¹⁰¹ Despite such funding, community care providers still reported low rates of Medicaid reimbursement. Nonagency personal attendant care providers' salaries were raised in July 2000 to $7.18 per hour, still lower than the prevailing wage for fast food workers or van drivers in Seattle.¹¹⁰²

(b) DEVELOPMENTAL DISABILITIES

In 2000, Washington reported serving 12,167 people with developmental disabilities in residential, out-of-home settings. Of these, 9,609, or 79 percent, lived in settings of six or fewer people.¹¹⁰³ This number exceeds the national average of 61 percent. Washington ranked 16th among the states in the percentage of citizens with developmental disabilities in such settings.¹¹⁰⁴ Washington also reported housing 2,089 people in institutions of 16 or more people, also below the national average of 27 percent.¹¹⁰⁵ A little more than half these residents-1,138-are in state institutions.¹¹⁰⁶ Washington has 20 state institutional placements per 100,000 people, placing it in the middle of the states in terms of the rate of institutionalization. (Mississippi has the highest rate, at 49; seven states tied for the lowest rate, with no state institution placements; and the national rate is 17.)¹¹⁰⁷ Another 659 of these residents lived in nursing homes-a two percent increase (from 646) from 1996.¹¹⁰⁸ Washington's rate of 11 DD nursing home placements per 100,000 people is again in the middle of the national range. (The highest is Oklahoma, at 36; Alaska, Arizona, and Florida tied for lowest, at one; and the national rate is 13.)¹¹⁰⁹ Washington reported 1,096 ICF/MR beds in eight facilities in 1998, a decrease from 1,907 beds in 1989.¹¹¹⁰ In 2000, Washington reported 948 people living in ICF/MR placements, or 16 per 100,000 people, ranking Washington 38th among the states in ICF placement.¹¹¹¹

In spending for developmental disabilities, Washington ranked 33rd in its total per capita spending on the Home- and Community-Based Waiver program in 2000.¹¹¹² It reported the home- and community-based services waiver covered 35 percent of its total spending-again, nearly the national average of 33 percent.¹¹¹³ In 2000, Washington had nearly $50 million in state funds unmatched by federal home- and community-based services waiver funds, or 9 percent of its total spending.¹¹¹⁴

Washington has a supported living program for people with developmental disabilities that exceeds other states in terms of size and expenditures.¹¹¹⁵ This is significant because many self-advocates have reported that individualized, supportive living settings, not group homes, are the "most integrated setting" for people with developmental disabilities. Washington reported spending approximately $125.5 million for 3,713 participants.¹¹¹⁶ Only four states-California, Iowa, Ohio, and Pennsylvania-had more participants.¹¹¹⁷ Washington spent almost as much on its supported living program as California (which spent about $5 million more), but California's program has more than four times more participants. Indeed, besides California, only Ohio spent more on supported living.¹¹¹⁸

Washington's DD advocates reported problems with Senate Bill 6751, a law that passed approximately five years ago. Designed to guarantee choice between ICF/MR facilities and community services, one advocate reported the state maintained empty ICF/MR beds to guarantee the "choice" in the law.¹¹¹⁹ However, another reported that the Center for Medicare and Medicaid Services (CMS) found the law violated the entitlement to ICF services because the law did not allow placement in ICF/MR services when community options were unavailable, and thus no "choice" was offered.¹¹²⁰

(c) ELDERS AND ADULTS WITH DISABILITIES

During the 1990s, Washington bucked the national trend by decreasing the number of nursing home beds, although only gradually and with significant fluctuations. In 1989, Washington had 296 nursing homes, which decreased to 285 by 1998.¹¹²¹ Beds decreased from 28,636 in 1989 to 27,204 in 1998, a 4.42 percent decrease.¹¹²² Still, nationally, the number of beds increased by 12.18 percent for the same period.¹¹²³ Average occupancy rates were not available.¹¹²⁴ However, beginning in mid-1999, the decline in Medicaid nursing home use leveled off and is now running above the level projected in the state budget.¹¹²⁵

Reports on Washington's nursing home services noted that the move to more cost-effective, community-based alternative services accelerated after 1994, when voters enacted Initiative 601, which limited the annual growth of state expenditures to the combined rate of population growth and inflation. Both were fairly low throughout the 1990s, leading to a decline in state funds. Another initiative, passed in 1999, sharply cut the state's motor vehicle tax. Coinciding with these tax cuts, the state made a "concerted effort" to divert and relocate nursing facility residents.¹¹²⁶ The result was a significant drop in Medicaid nursing home use, from 17,448 residents in 1993 to 13,789 in 2000.¹¹²⁷ Despite the dramatic reduction, it has been estimated that one-third of them do not need a skilled nursing facility level of care.¹¹²⁸

The strategies used by the state to reduce the nursing facility population are instructive. Beginning in 1995, each of the state's six regions had an annual reduction target for nursing facility caseloads. The state compiled monthly statistics to track trends targets. Case managers were assigned to specific nursing facilities and their responsibilities were limited to assessing and working with clients to be relocated. Within seven days of entering a nursing facility, a resident receives a comprehensive functional assessment using an instrument developed by the state to determine eligibility for all residential settings. The case manager then determines whether the resident should be classified as an "active relocation client." If so, discussions with the resident about community-based options and preferences begin within two weeks, a time frame that ensures that the community placement process will begin before the person begins functionally and emotionally to deteriorate.¹¹²⁹

In addition to an assertive approach to community placement, case managers in Washington have a flexible pot of money available to facilitate nursing home transition from an unusual source-fine monies levied against nursing facilities for violations of licensing standards. Fine monies are placed in a Civil Penalty Fund and can be used to fund security deposits, utilities, furniture, home modifications, and other housing costs. Case managers have significant flexibility in the use of these funds.¹¹³⁰

According to a study of services for elders and adults with physical disabilities in Washington, the state "is among the nation's leaders in using consumer-directed care and nonmedical residential services, such as adult family homes and assisted living."¹¹³¹ Washington relies almost entirely on Medicaid personal care and home- and community-based services waivers as the source of financing for its noninstitutional services. This means that persons receiving publicly funded services must meet a nursing home level of care in a system that is not necessarily designed to address significant medical and nursing needs. The state has recognized this and is developing a number of strategies to strengthen the medical component of its system, including allowing more nursing visits and increasing reimbursement for nursing visits.¹¹³² In addition, the low wages of personal assistants and the tight labor market in Washington, particularly in the Seattle area, has created a crisis in which the system is "starved for resources."¹¹³³

(d) MENTAL ILLNESS

In 2001, Washington maintained about 1,090 beds in three state psychiatric hospitals. A total of 2,825 persons, 257 of them under the age of 21, were institutionalized in Washington's three state psychiatric hospitals during the course of the same year. Approximately 60 percent were in the hospital pursuant to an involuntary civil commitment; another 30 percent were subject to an involuntary criminal commitment; and only 10 percent resided in the institution under a voluntary commitment. A total of 340 persons, including 46 under age 21, had been institutionalized for more than a year.¹¹³⁴ The state has no plans to close any of the three state hospitals.¹¹³⁵

Washington finances its community-based mental health services, the Integrated Community Mental Health Program, through a full carve-out, stand-alone mental health and substance abuse Section 1915(b) waiver combined with Title XX block grant and state funds.¹¹³⁶ The state's mental health program is administered by the Mental Health Division (MHD) of Department of Social and Health Services (DSHS), through contracts with 14 county-based Regional Service Networks (RSNs) which serve as Prepaid Health Plans and in turn contract with Community Mental Health Centers for service delivery. About 106,000 persons received some form of behavioral health services through this managed care system.¹¹³⁷ The RSNs are designated by state statute as the single point of entry for service delivery.¹¹³⁸ Informants suggest that the RSNs have considerable discretion in the mix of community mental health services they offer. They may provide consumer-operated services but are not required to do so.

A 1999 performance audit of Washington's public mental health system conducted by the state's Joint Legislative Audit and Review Committee (JLARC) found that services were insufficiently coordinated among DSHS's MHD and its other divisions, including the Division of Developmental Disabilities (DDD), the Division of Alcohol and Substance Abuse (DASA), and the Aging and Adult Services Administration (AASA), and between the state mental hospitals and the RSNs. The study found that almost no information is collected on a statewide basis on client or system outcomes and the capitated funding to the RSNs contained wide disparities in resource allocation to RSNs and services provided to consumers that were not correlated with differences in the prevalence of mental illness, the severity of disabilities of the persons served, or cost differences among the RSNs.¹¹³⁹

JLARC recommended that DSHS improve coordination of services between the MHD and other DSHS divisions and the coordination of state hospital discharge planning between the state hospitals and the RSNs. DSHS's response to this recommendation was to promote the "A-team" model, in which "challenging multi-need cases" are staffed by teams of cross-system partners, including AASA, RSNs, County Designated Mental Health Professionals (CDMHP), DDD, DASA, and the Department of Corrections (DOC). DSHS claims that the cross-system staffing has resulted in a reduction in inpatient hospitalization and a reduction in the use of emergency services.

DSHS initiated another coordinated services model, the "No Wrong Door" multiagency case coordination model, which focuses on persons with multiple disabilities, troubled children, youth and their families, and long-term TANF families.¹¹⁴⁰ However, a study of children's mental health services released by JLARC in August 2002 did not find evidence that these interagency coordination efforts were effectively used for statewide coordination of the delivery of children's mental health services. The study found that no single entity within DSHS is responsible for identifying systemic problems, coordinating cross-agency changes, or incorporating these themes into an integrated mental health delivery system.¹¹⁴¹

Of most relevance to Olmstead implementation, JLARC recommended that "MHD, AASA, state hospitals, and RSNs should ensure that hospital discharge and community placement for eligible clients occur in a timely manner." DSHS responded to the JLARC recommendation with a project called "Enhanced Community Services," which identified consumers in the state hospitals who could be more appropriately served in community settings and coordinated their transition to the community through a steering committee consisting of representatives from AASA, DSHS Health and Rehabilitative Services Administration (HRSA), Medicaid Assistance Administration ( MAA), RSNs, the Department of Health (DOH), and patient family members. The project is to include evaluation based on outcomes for individual clients, DSHS, and community service systems.¹¹⁴² DSHS further agreed to developed methods for measuring consumer and system outcomes and to change its resource allocation methodology to improve the consistency of services around the state.¹¹⁴³

The implementation plan for the Enhanced Community Services project includes the following stages: first, a collaborative effort of Eastern and Western State Hospitals, AASA, the RSNs, and the CDMHPs to clarify discharge and community placement protocols; and second, a four-year transition process for 90 adults and 30 elders currently institutionalized at Western State into community settings. An additional 60 persons are scheduled to move from Eastern State. Stakeholders perceive these targets as a response to a legislative mandate initiated by JLARC rather than a response to Olmstead planning. As people are discharged, their services will be evaluated for use, cost data, consumer satisfaction, and clinical outcomes.¹¹⁴⁴

(e) BRAIN INJURY

JLARC reports that the lack of community resources for individuals with behavioral issues related to organic brain disorders, such as dementia and traumatic brain injury, is a challenge. These persons are often housed in state hospitals and community geriatric care facilities.¹¹⁴⁵

(f) LITIGATION

In 1999, the Washington Protection & Advocacy system filed a lawsuit, Allen v. Western State Hospital (W.D. Wash.), seeking injunctive relief for persons with developmental disabilities who were inappropriately institutionalized or at risk of institutionalization at Western State Hospital, one of the state's three psychiatric institutions. In late 1999, the parties reached agreement on a settlement that would require the planned transfer of Washington residents to the most integrated setting and the development of an integrated system of community support.¹¹⁴⁶ In 2000, the P&A filed another lawsuit against Western State, this time on behalf of residents of the Center for Forensic Services at the institution. In addition to challenging conditions at the Center, the case, Rust v. Western State Hospital, also includes a claim for services under the ADA's integration mandate.¹¹⁴⁷

A lawsuit filed in 1999 by The Arc on behalf of persons waiting for community developmental disabilities services, Arc of Washington State v. Quasim, was settled in 2001 over the opposition of the P&A organization and Washington State Legal Services, who were not parties or counsel in the case.¹¹⁴⁸ The settlement required DSHS to recommend to the governor an additional $14 million (state/federal) dollars in the 2002 supplemental budget for fiscal year 2003, which if annualized in the following biennium (2003-05) would add an estimated $24 million a year to the Developmental Disabilities Division budget for community services.¹¹⁴⁹ The P&A and Legal Services opposed the settlement because it obligated DSHS only to ask for the initial funding and try to reach agreement on the amount of funds it will request after that. In return, the settlement waived other potential claims of the members of the class, which the agreement expanded to cover all clients of DDD eligible for ICF/MR or home- and community-based waiver services who had not been provided needed services with reasonable promptness, as well as those who would become clients of DDD at any time before December 31, 2006.¹¹⁵⁰

On October 26, 2001, the district court denied approval of the settlement agreement on the ground that the expanded settlement class was too broad to satisfy the requirements for class certification under Rule 23(a) and (b)(2) of the Federal Rules of Civil Procedure. Accordingly, the parties renegotiated and submitted a revised agreement to the court in April 2002 specifying that DSHS would request $14 million in new funds in 2003, $21.3 million in 2004 and $22.4 million in 2005. The total annualized amount of new funding would be $41.3 million. The state estimates that by 2005, an additional 860 persons would be able to receive community residential services. The agreement is still pending before the district court.

(g) WASHINGTON'S OLMSTEAD PLAN

On March 27, 2000, Governor Gary Locke designated the state DSHS as the lead agency for Olmstead planning.¹¹⁵¹ The state obtained input from a number of stakeholders in the disability community through a Disability Initiative Advisory Committee and an Olmstead Workgroup that advocates have characterized as "handpicked." Concerned about their lack of input into the planning process, the advocacy organizations-People First, the Centers for Independent Living, Washington Protection & Advocacy System and The Arc-teamed up and met with legislators, DSHS, the Office of Civil Rights and CMS. As a result, DSHS agreed to hold public forums to obtain input into the plan. However, all the meetings were in the morning, and neither accommodations nor transportation was provided. As a result, many people with disabilities were not able effectively to participate.¹¹⁵²

The planning process was based on a "planning cycle" tied to the state biennial budget cycle. The process was to have four phases corresponding to the 2001-2003 biennial budget, the 2002 supplemental budget request, the 2003-2005 biennial budget and the 2004 supplemental budget request.¹¹⁵³ The planners envisioned that in each phase, a set of plan activities would be developed, incorporated into the budget process, funded and implemented; in the next phase, the cycle would begin again. Although the conceptualization of plan activities as budget proposals certainly facilitates implementation, the short term focus of the "phases" has been criticized by stakeholders as lacking in vision and a long-term view.

The initial focus of the plan was on developing the 2001-2003 biennial budget and on the first two phases of the planning cycle.¹¹⁵⁴ Each of the following state agencies developed an Olmstead plan, released in December 2001: Aging and Adult Services, DSHS, Washington State Agency Council on Coordinated Transportation, Children's Administration, Division of Alcohol and Substance Abuse, Division of Developmental Disabilities, Medical Assistance Administration, Mental Health Division, Division of Vocational Rehabilitation, and the Department of Veterans Affairs. Additionally, a separate chapter was written for two initiatives for community integration: the Nursing Facility Transition Grant and the Personal Attendant Recruitment and Retention Program.

Each agency plan contains Phase 1, which outlines current activities linked to Olmstead, and Phase 2, which outlines future initiatives. Phase 2 leads with "stakeholder" concerns and the individual agency's plans to address them. The stakeholder comments are listed in a left-hand column in quotes, with the heading "Stakeholders said"; the agency's response plan to each comment is in the right-hand column. For example, the DSHS section reads, in the left-hand column, "Stakeholders said: 'The supply of safe, affordable housing is insufficient to meet the demand.'" The right-hand column describes plans to establish a housing subcommittee of the Olmstead Working Group to recommend solutions for housing. A Phase 2 Progress Report lists the status of each planned measure for each agency.

An updated Olmstead plan was published in December 2002, consisting again of separate reports from the state agencies that engaged in the initial planning.¹¹⁵⁵

Washington's Olmstead plan involves a more comprehensive list of agencies and services than other states. The plan notably addressed transportation, which other states neglected. As in many states with a similarly large geographic area, a need for increased accessible transportation in rural areas was identified. The Agency Council on Coordinated Transportation (ACCT) agreed to fund coordinated special needs transportation systems in 18 counties that did not already have such services, although with the caveat that this service expansion depended upon the level of funding in the 2001-03 budget. ACCT also committed to applying for a Robert Wood Johnson Foundation grant for transportation for persons who would be institutionalized without such transportation. These are positive first steps.

The Division of Developmental Disabilities (DDD) deserves discussion because it undertook a survey of its institutional population to determine eligibility for community services. DDD also agreed to identify people with developmental disabilities who live in nursing homes and, of these, which would benefit from community settings. Such a determination is a fundamental action for any meaningful Olmstead plan, and Washington should be commended for recognizing this. Other states, such as Illinois, simply sidestepped this issue or utilized tautologies such as describing to current assessment and deflection processes.

Unfortunately, Washington's "survey" appears to have consisted of asking state institutional residents and/or their guardians whether they would like to live in the community. Of 1,100 people surveyed, 80 said they would like to move to the community, and DDD has agreed to find community residences for these people.¹¹⁵⁶ Of these people, it is not clear for how many the guardian or some other third party expressed the preference (whether such preference was to stay or leave). DDD stated, however, that those residents "contemplating a move will have an opportunity to visit residential and employment options prior to moving." The implication is that other residents were not given such opportunities to view and assess community alternatives.

Olmstead requires that community integration not be opposed by the "affected individual." Another factor, however, is that the person is capable of "handling and benefitting from community life."¹¹⁵⁷ By DDD's own description, the survey does not appear to have involved such an assessment.¹¹⁵⁸ It could be that DDD considers everyone in the institutions "capable of handling and benefitting from community life" and thus only felt the need to assess residents to see whether they "opposed" community placement, although DDD does not say this in its plan.

In asking whether institutional residents would like to live in the community, Washington officials asked the wrong question. Olmstead requires only that the affected person not oppose community placement. The Washington process places the burden on the person affirmatively to express a preference for leaving the institution and moving to the community. Indeed, one of DSHS early invitations to a community forum to obtain input on Olmstead implementation mis-stated the Olmstead requirement that community integration not be opposed by the affected individual. In the state's version, the Supreme Court's opinion applies only to persons who "desire[.] to live in a community setting" (emphasis added).¹¹⁵⁹

If that is the case, though, an individual preferences survey-particularly one that relies on guardians and family to make the preferences-is clearly inadequate. Historically, such surveys have proved to be notoriously unreliable indicators of whether an institutional resident or his or her family would prefer community placement. When the question is posed without providing any concrete information or experience on what community services look like or how they are structured, such surveys tend to overwhelmingly favor institutional placement. By contrast, individuals and families who move into the community-even those who opposed leaving the institution-often report far more positive experiences than when they were institutionalized. The 1985 Pennhurst longitudinal study of Dr. James Conroy, which tracked the preferences of families of residents of a Pennsylvania institution that later closed, is an example of this shift in attitudes. Because Olmstead holds that community integration is a right, states must ensure protection of this right by ensuring the "choice" being offered is as informed as possible, with opportunities to visit and meet with community providers and residents.

(h) PLAN IMPLEMENTATION AND SYSTEMS CHANGE ACTIVITIES

Currently, the planners are in Phase 3 of the planning cycle. Because the state has a budget deficit of $1.5 billion, no new funds for Olmstead implementation have been requested in the 2003 biennium budget, and it is expected that new funding proposals will not be developed until 2005.

Action steps that were implemented during Phase 2 of the plan include the following.¹¹⁶⁰

(1) Aging and Adult Services Administration (AASA)

Perhaps because AASA's implementation activities have been supported by the Nursing Facility Transition Grant, this agency has been the most active in plan implementation. As of August, 2002, the agency had:

• Amended rules for personal assistance to allow services to be provided outside the home.
• Reviewed results of a study by the University of Washington School of Nursing of implementation of self-directed care and consumer satisfaction.

Developed an RFP and awarded two contracts for the Personal Assistance Recruitment and Retention (PARR) program, a three-year pilot program to enhance availability and retention of personal assistance workers. However, because wages of personal assistance workers in publicly-funded programs are set by the legislature, it is unclear whether the principal barrier to the lack of availability of personal assistance services-low wages-will be removed.¹¹⁶¹

• Held monthly meetings with the Mental Health Division to discuss the needs of residents of state hospitals who may not need to be institutionalized.
• Applied for and received a Nursing Facility Transition Grant.
• Continued to provide case management and annual assessments for consumers in all settings.

(2) Children's Administration

The planning efforts to enhance interagency coordination so that increasing numbers of children can be supported in the community have not moved as rapidly as hoped. As the JLARC studies have found, the state agencies have found such collaboration to be a challenge. The plan was to develop a tracking system to ensure that fewer children were waiting for placement, but this does not seem to be operational yet.¹¹⁶²

(3) Division of Alcohol and Substance Abuse (DASA)

The agency's efforts are focused on achieving better integration of services, especially for persons who are homeless and have a chronic condition, and better awareness that persons with disabilities may also have addictions.

(4) Developmental Disabilities Division (DDD)

As noted above, the plan allows families to make the choice whether the person with disabilities will be able to move to the community. Of the 80 persons initially identified, only 60 were actually targeted for community placement.¹¹⁶³

The plan calls for identifying persons with developmental disabilities who live in nursing facilities and wish to move. The process allows the person (although in practice this may be the family) to choose a broker from a developmental disabilities provider agency to assist with transition.¹¹⁶⁴ The plan calls for a preliminary assessment of services needed for persons who will be moving to the community in preparation for a budget request for the 2003 biennium; however, it is doubtful that this will occur given the present budget situation.

(5) Medical Assistance Administration (MAA)

Implementation issues for this agency are focused on enhancing outpatient medical services. Of note is that the consumer outreach efforts called for in the plan have been scaled back considerably.¹¹⁶⁵

(6) Mental Health Division

In the 2001-2003 biennium, the state legislature appropriated $5.7 million for expanding community services for people transitioning from state hospitals and $8.2 million for enhancement of existing programs. The state assigned two full-time equivalent staff members to coordinate the transition process, one to focus on long-term care and home- and community-based services issues, the other based in psychiatric hospitals.¹¹⁶⁶

(7) Division of Vocational Rehabilitation (DVR)

Phase 2 of the plan called for providing independent living services to 170 persons with disabilities "for whom employment is not an option." Instead, DVR has focused on its "core mission" (traditional vocational rehabilitation services) during the last biennium. A state official cited the low level of funding for Washington CILs as a barrier.¹¹⁶⁷

(i) IMPLEMENTATION OF WASHINGTON'S SYSTEMS CHANGE GRANT

Washington received a nursing facility transition grant in 2001 to support the transition of 300 persons under the age of 65 from nursing facilities and remove barriers to community living. The grant is administered by DSHS's Aging and Adult Services Administration (AASA). Grant activities include (1) developing relationships with housing authorities to increase housing resources available to people leaving nursing facilities; (2) contracting with independent living consultants to provide peer mentoring, skills training, advocacy, and technical assistance in areas such as managing personal assistants, budgeting and paying bills; (3) augmenting the provision of durable medical equipment so that people can obtain the assistive and adaptive equipment they need before leaving the nursing facility. Three Washington housing authorities have Access 2000 Section 8 vouchers which provide a dedicated source of support for people leaving nursing facilities. Under the transition process envisioned by the grant, nursing facility social workers will develop a plan for community living with the resident and connect the person with independent living consultants who can provide the desired support.¹¹⁶⁸

The state has recognized that it will not be able to meet the goal of enabling 300 persons to transition from nursing facilities. Barriers encountered include the absence of support systems for people with complex needs, especially in the rural areas. In addition, the grant activities based on fee for service arrangements with Centers for Independent Living have been difficult to implement with CILS that are not accustomed to this type of service provision and do not have business systems in place to support it.¹¹⁶⁹

Despite the availability of Access 2000 housing vouchers from HUD, state officials implementing the systems change grant quickly encountered the barrier of the "nervousness" of housing providers about developing accessible housing because of its greater expense and the fear that income from these developments would be insufficient to cover costs. Reportedly, providers are more interested in developing assisted living units.¹¹⁷⁰

3. NEVADA

(a) STATE OF COMMUNITY SERVICES PRIOR TO OLMSTEAD PLAN DEVELOPMENT

Nevada's position compared to other states is unusual given its recent population growth. Nevada was the fastest-growing state in the 1990s. It gained nearly 800,000 people, a growth rate of 66.3 percent, placing its population at about 2 million in 2000.¹¹⁷¹ Nevada's disability population increased as well, with a current disability population of 375,910.¹¹⁷² Even before this growth, Nevada spent relatively little on its disability services and in particular its community service system. It seems clear spending has not kept pace with Nevada's record growth during the 1990s.

Recent growth may help account for Nevada's low number of out-of-home residential placements for people with developmental disabilities, whether in institutional or community settings. Along with Arizona, Nevada had the lowest placement rates per 100,000 people than any other state, with only 1,096 people in residential placements.¹¹⁷³ (By contrast, North Dakota, with smaller but far more static population of less than 700,000, served 2,150 people with developmental disabilities in residential placement.) Of the people Nevada serves, however, 900, or 82 percent, were in homes of six or fewer people, with only 181, or 17 percent, in institutions.¹¹⁷⁴ The number of Nevada's community placements grew by 46 percent from 1996 to 2000, again probably more a reflection of Nevada's growth rather than deinstitutionalization. However, in the number of community placements per 100,000 people, Nevada ranked 48th among the states, trailed only by Georgia, Texas and Kentucky.¹¹⁷⁵

Nevada has never had a significant developmental disability institutional population, again possibly because of its earlier low population. In fact, Nevada is the only state whose state DD institutional population has actually increased since 1977, from 118 to 141 in 2000. (The population declined by nine people from 1996 to 2000.)¹¹⁷⁶ On average, states decreased their institutional populations by 68 percent.¹¹⁷⁷ Nevada did, however, decrease the number of people with developmental disabilities from 104 in 1996 to 40 in 2000.¹¹⁷⁸

Nevada's community services fiscal efforts for developmental disabilities trailed every other state.¹¹⁷⁹ Nevada's per capita spending was $.72 in 2000, the lowest in the nation and far below the national average of $2.75.¹¹⁸⁰ Nevada's per capita institutional spending was also low, at $.30, but higher than eleven other states and more in line with the national average of $.90.¹¹⁸¹ As one might expect, Nevada also has relatively low Home and Community-Based Services waiver expenditures for people with developmental disabilities. Although Nevada was one of the first states to obtain an MR waiver, only 950 people were served in 2000, and the state spent only $3.57 per capita (based on the total state population) in waiver expenditures. Only Mississippi, at $1.22, spent less.¹¹⁸² Nevada's rate of participation per 100,000 people was 45th among the states.¹¹⁸³ Waiver funds also constituted a low percentage of Nevada's total spending, at 22 percent.¹¹⁸⁴

Low spending characterizes all of Nevada's community-based disability services. Even though developmental disability spending is lower than nearly every other state, Nevada's mental retardation Medicaid waiver is, at $19.8 million, by far the largest part of its $27.5 million waiver program.¹¹⁸⁵ Nevada's two elderly waivers total approximately $7.2 million and its physical disabilities waiver is $411,600.¹¹⁸⁶ While the PD waiver represents at 115 percent increase from 1996, such spending levels are suited far more for the small state Nevada was than the larger state Nevada has become. For example, Hawaii, with approximately 1.2 million people (Nevada's population in 1990) reported $51.7 million in waiver spending in 2001, with approximately $22.4 million dedicated to adults with disabilities.¹¹⁸⁷

Nevada reported approximately 2290 Medicaid-funded residents in 50 skilled nursing facilities in 2000.¹¹⁸⁸ While Nevada reported .9 waiver recipients per 1,000 total population, it served 2.49 people per 1,000 in intermediate care facilities or nursing homes.¹¹⁸⁹ Nevada serves many ICF and nursing home residents in out-of-state placements.¹¹⁹⁰ Nevada's Medicaid spending on nursing homes has increased by nearly 50 percent in the past five years, from $63 million in 1996 to $92.2 million in 2001.¹¹⁹¹ Spending on intermediate care facilities also increased, although not as dramatically, from $23.7 million in 1996 to $28.9 million in 2001.¹¹⁹² Personal care expenditures increased in this period as well, from $1.1 million to $6.5 million, but paled in comparison to Nevada's nursing home spending. Indeed, the nearly $30 million increase in nursing home spending from 1996 to 2001 is five times more than Nevada's current total spending on personal care and more than Nevada's total spending on personal care during those five years.¹¹⁹³

It should also be noted that Nevada reports serving 90 of its institutionalized population, including children, in out-of-state institutions.¹¹⁹⁴ For a state with a small number of people in residential settings, this is a significant number.

Nevada reported serving 1,872 people in its personal care program in 1998-99, or 1.12 people per 1,000 total population.¹¹⁹⁵ This is significantly lower than the national average of 2.59 and places Nevada in the bottom third of the states in personal care participation.¹¹⁹⁶ In 1997-98, when personal care expenditures were approximately $3.4 million, Nevada spent $2.04 per capita and $1,828 per recipient.¹¹⁹⁷ Per-recipient spending was thus less than all but four states and the District of Columbia and was far below the national average of $6,870.¹¹⁹⁸ Measured per capita, personal care spending was also far below the national average of $18.11 and was lower than all but 12 states.¹¹⁹⁹

Nevada's Medicaid services are administered by each of its seventeen counties, resulting in reported discrepancies in type and level of care. According to one state official, persons in Nevada's two largest counties (Clark and Washoe, which include Las Vegas and Reno, respectively) are far more likely to access community-based personal care; in other counties, nursing homes are often the only available services.¹²⁰⁰

(b) OLMSTEAD PLANNING PROCESS

Following the Olmstead decision, Nevada's disability advocacy community began pushing for the state to begin to plan for compliance with the Court's mandate.¹²⁰¹ Nevada's planning process began with the state legislature's enactment of AB 513 in July 2001.¹²⁰² The bill appropriated $150,000 to the Nevada Department of Human Resources (DHR) to develop a long-term Strategic Plan for people with disabilities.¹²⁰³ DHR held public hearings in fall 2001 in the state's largest cities to obtain input on how the plan should be developed.¹²⁰⁴ At the same time, Governor Kenny Guinn appointed a Steering Committee to develop strategic plans not just for disability services but also for senior services, rural healthcare and service rate structuring. The Governor's Task Force on Disability, which began meeting in August 2001, developed the disability strategic plan.¹²⁰⁵

The Task Force has seventeen members and was chaired by Brian Lahren, executive director of the Washoe Association for Retarded Citizens (a Reno-area community services provider) and former administrator of Nevada's mental health and mental retardation system.¹²⁰⁶ Compared to Olmstead planning committees in other states, Nevada's committee contained few current state officials: of 17 members, the only two state officials were Paul Gowins, the community liaison for the Office of Community-Based Services, and Tina Gerber Winn, administrator of Nevada's Medicaid HCBS programs.¹²⁰⁷ Many had experience with advocacy or community provider organizations, such as independent living centers or Parent Training Institutes, and many held dual roles in the disability community. For example, Linda Raymond was both president of the Nevada Association for the Deaf and director of Sensory Deficit programs for the Clark County school system (which includes Las Vegas).¹²⁰⁸ Committee members were diverse in terms of the disabilities they served or represented.

Perhaps as a result of this makeup, the committee relied heavily on the advice of persons not traditionally utilized by state governments. The committee hired Tony Records and Associates, based in Bethesda, Maryland, to serve as the primary developer of the plan.¹²⁰⁹ The committee also consulted with Steve Gold, a Philadelphia attorney who has represented institutionalized people with disabilities in many community integration cases against state governments.¹²¹⁰ Gold testified before State Senator Dina Titus' Sub-committee of the State's Program for Providing Services to Persons with Disabilities in summer 2001.

Released in October 2002, the committee's plan is one of the nation's longest (492 pages, including attachments) and most comprehensive. It paints a straightforward, deep, and fairly bleak analysis of Nevada's current compliance with Olmstead, recognizing not only the underfunding evident in available statistics¹²¹¹ but also uncovering and documenting other issues not readily ascertained in data. For example, the plan finds that Nevada has undercounted the number of people with disabilities waiting for services. In other words, Nevada has an artificially low waiting list. The study also found that more and more people with disabilities were graduating from or exiting special education entering adulthood, where they would require community-based services.¹²¹² The growth of Nevada's disability population-a reflection of its overall high growth-and the corresponding need for noninstitutional services is likely to present the strongest challenge to Olmstead implementation.¹²¹³

In terms of recommended actions, Nevada's plan is not as budget-oriented as that of Texas, although it does attempt to identify outside sources of funding where possible. The plan contains nine broad goals, with each goal including a number of strategies.¹²¹⁴ Many of the goals and strategies reflect important values and considerations but provide little in the way of specific benchmarks for the state to follow. Others, however, provide specific tasks and activities for the state, allowing the committee to evaluate objectively whether the state has followed its recommendations.

The goal with the most direct bearing on community integration is Goal 2, which states as follows:

Service provision to people with disabilities in the most integrated, appropriate settings will be assured through the application and resulting service plans of individualized, setting neutral assessments and expedited service entry.¹²¹⁵

It is under this goal that the plan recommends Nevada establish a "money follows the person" system similar to Texas' Rider 37 for nursing homes.¹²¹⁶ The plan also recommends assuring that any Medicaid-funded nursing home resident be eligible for state-funded community services.¹²¹⁷

Other important goals in Nevada's plan include provisions to increase information and knowledge of community services through establishment of a statewide "2-1-1" system, which would allow people with disabilities to access information on community services by dialing 2-1-1.¹²¹⁸ Another strategy to avoid unnecessary institutionalization is to establish a "No Wrong Door" system which would help people with disabilities develop long-term life care plans that would include all anticipated services, including medical care, rehabilitation, insurance and financial planning.¹²¹⁹ A third plan is to establish a state Office of Disability Services within DHR to serve as a "single point of entry" for persons seeking disability assistance and as a coordinator of disability services across different agencies.¹²²⁰ This proposal is modeled after a similar office established in New Jersey.¹²²¹

Governor Guinn's proposal to dedicate $32.5 million to building a 150-bed state psychiatric facility near Las Vegas exemplifies the disconnect that can occur between the lofty ideals of plans and the actual allocation of resources. Nevertheless, legislative opposition to the new facility shows the plan may have raised the awareness of state lawmakers. In a January 23, 2003 hearing on the state budget, lawmakers from both parties criticized the Governor's proposal as a violation of Olmstead.¹²²²

4. ARIZONA

(a) STATE OF COMMUNITY SERVICES PRIOR TO DEVELOPMENT OF OLMSTEAD PLAN

(1) Developmental disabilities

In services to people with developmental disabilities, Arizona has been moving toward becoming an institution-free state. Of 3,598 people served in residential settings in 2000, 3,298-or 92 percent-lived in homes of six or fewer people.¹²²³ Another 258-7 percent-lived in institutions of 16 or more people, of whom less than 150 lived in a state facility.¹²²⁴ The remaining 1 percent, or 42 people, live in homes of 7 to 15 people.¹²²⁵ Arizona uses few ICFs/MR. In 1998 it reported 11 facilities with 223 beds. This placed Arizona at a rate of 0.05 ICF beds per 1,000 people-far below the national average of .047 and, for example, Illinois' rate of 0.94.¹²²⁶ Arizona's Olmstead plan itself reported that as of April 30, 2001, 194 people lived in six ICF/MR facilities and another 61 lived in ICF skilled nursing facilities.¹²²⁷ This represents an unusually small reliance on hospital-like, medical model programs, whether small or large. Indeed, officials from the Arizona Division of Developmental Disabilities have stated it is their policy that no more private ICFs/MR will be established.¹²²⁸ This aggressive policy of ensuring nonmedical model, HCBS services for people with developmental disabilities sets Arizona apart from other states, even those that have reduced their state facilities.

Arizona's remaining state institution for people with developmental disabilities is the Arizona Training Program at Coolidge. Coolidge also contains six state-operated group homes on grounds, which account for about 30 to 35 of its residents.¹²²⁹ Arizona reported spending approximately $8.6 million in state general fund monies. The state has made no new placements at Coolidge, and last January reported commissioning a study to plan for the institution's possible closure.¹²³⁰ The division also reported that it could serve an additional 155 people in the community. However, some parents of Coolidge residents have opposed the institution's closure, as have local officials from Coolidge, who fear the impact it would have on the local economy.¹²³¹

Arizona reports its HCBS waiver data differently than other states, so precise figures on the amounts spent and number of people served were not available through CMS.¹²³² However, according to the National Association of State Directors of Developmental Disabilities, Arizona's waivers for developmental disabilities served 11,432 people, with total spending of $287,561,709.¹²³³ Arizona ranked 34th in spending per participant, at $26,826, although it ranked 15th in expenditures per citizen. Arizona's total long-term expenditures in 2000 were $304,572,318. Thus, the vast majority of the state's developmental disability long-term care funds-more than 94 percent-was dedicated to community-based waiver services.¹²³⁴ Nevertheless, barriers to effective community service delivery remain, including a lack of providers and services in rural areas and lack of providers of specialized services such as behavioral support even in urban areas.¹²³⁵

Arizona's total MR/DD spending- for both long-term and short-term care-was $367,652,253 in 2000.¹²³⁶ Of this amount, all but 13 percent, or approximately $49 million, was matched by federal Medicaid dollars.¹²³⁷

Commendably, Arizona has by and large avoided placing people with developmental disabilities in nursing homes. Only 57 people with disabilities lived in nursing homes in 2000, a decrease of 10 people from 1996.¹²³⁸ This rate is less than one per 100,000 people and is among the nation's lowest.¹²³⁹

(2) Elders and adults with disabilities

Arizona reported 167 nursing homes in 1998 with 18,245 beds. The occupancy rate was unavailable.¹²⁴⁰ Although the number of nursing homes remained the same, the number of beds increased from 17,579 in 1997. However, the ratio of beds to total population (one bed per1,000 people) remained low, a bit more than half the national average.¹²⁴¹ The ratio of Medicaid nursing home patients, 3.89 per 1,000 people, was also lower than the national average of 6 per 1,000.¹²⁴² (By comparison, Indiana reported a ratio of 7.84 Medicaid recipients per 1,000 people, and total beds of 63,350.)¹²⁴³ In its Olmstead plan, Arizona reported that, of the 19,515 people enrolled in its Long Term Care System for Persons Who Are Elderly and/or Have a Physical Disability, 9,953 were in nursing homes as of May 1, 2001.¹²⁴⁴ Members of Arizona independent living centers reported that a lack of affordable, accessible housing is a significant barrier to moving people out of nursing homes; in Maricopa County, which includes Phoenix, a two- to three-year wait for Section 8 housing vouchers was reported.¹²⁴⁵ A lack of accessible transportation was also cited as a significant barrier, particularly in rural areas.¹²⁴⁶

(3) Mental illness

Arizona officials reported increased spending and incentives to promote discharge from state psychiatric hospitals to the community. Arizona's Olmstead Plan reports that 99 percent of children and adults with behavioral health needs receive services in the community,¹²⁴⁷ and indeed, Arizona's single state psychiatric institution maintains a relatively modest number of beds, 335 at the end of 2001, of which an average of 306 were occupied during that year, 73 of them by persons who had been institutionalized for more than a year.¹²⁴⁸ Arizona has elected to use a relatively wide variety of Medicaid options to serve persons with mental illness, including COBRA case management, the clinic option, the rehabilitation option and the personal care option. The state mental health agency spends $800,000 annually on consumer-operated services.¹²⁴⁹

Officials further reported that Arizona House Bill 2003 increased by $50 million housing options and community in-home supports for adults with a serious mental illness, as well as an expansion of Medicaid Title XIX services for this population. Nevertheless, Arizona officials acknowledged that more people with mental illness could be integrated into the community, and cited the lack of residential services, the lack of qualified service providers, neighborhood opposition, and the lack of affordable housing as barriers.¹²⁵⁰

Arizona reported that 8,080 people with disabilities were served under its Personal Care waiver from 1998 to 1999.¹²⁵¹ However, these figures do not include personal care Arizona offers to Medicaid-eligible people through its Section 1115 managed-care waiver.¹²⁵² In its Olmstead plan, Arizona reported 8,196 persons with disabilities receiving services in their own homes as of May 1, 2001, and another 1,366 living in alternative residential settings.¹²⁵³

Staff at Arizona independent living centers, particularly those in rural areas, reported a dearth of personal attendants, which made it difficult for people to move out of nursing homes.¹²⁵⁴ The adequacy of in-home personal attendant services is the subject of a lawsuit, Ball v. Biedess.¹²⁵⁵ Brought in 2000 by the P&A agencies for Arizona and the state's Native American nations on behalf of a nine people with physical disabilities, the suit alleges Arizona's payments to personal attendants are insufficient to enlist enough in-home care providers and attendants to fill the need. In their October 8, 2001 Motion for Summary Judgment, the plaintiffs cited provider studies claiming turnover rates between 42 and 175 percent.¹²⁵⁶ According to an attendant care provider serving four Arizona counties, including the counties which contain Phoenix and Tucson, there were at least 100 vacant home care positions in those counties, and at least several hundred families who needed services lacked them as a result.¹²⁵⁷ Arizona's major independent living centers confirmed this view, similarly citing low wages and high turnover of personal attendants as affecting quality of services and limiting the number of people who could leave nursing homes.¹²⁵⁸ On the positive side, however, the director of a CIL reported that eligibility for personal attendant services was fairly broad-up to 250 percent of the federal poverty level.¹²⁵⁹

Advocates report that housing is the single biggest barrier to movement from nursing facilities and other institutions. In Maricopa County, the waiting list for Section 8 housing is reported to be two to three years.¹²⁶⁰ Transportation is another significant barrier, particularly in rural areas.¹²⁶¹

(b) ARIZONA'S OLMSTEAD PLAN

(1) Initiative

Arizona's Olmstead plan, released on August 27, 2001, was authored by three state agencies: the Arizona Health Care Cost Containment System (the state Medicaid agency, which oversees Arizona's Long-Term Care System), the Arizona Department of Health Services (which oversees the Division of Behavioral Health Services), and the Arizona Department of Economic Security (which oversees the Division of Developmental Disabilities).¹²⁶² Arizona began its Olmstead planning in June 2000, prior to President Bush's Executive Order but following the letter to state officials from then-HHS Secretary Donna Shalala. The report cites the plan as the State's own initiative following the Olmstead decision itself and "subsequent information from the Centers for Medicare and Medicaid Services."¹²⁶³

(2) Inclusiveness

In 2002, each of the three state agencies responsible for the plan produced a draft in its own area. The state then sought comments on the plan and to that end, convened four regional stakeholder meetings in August 2000. The plan does not identify which stakeholders participated, but reports that in September 2000 the state met with representatives of statewide disability councils to find out how to secure consumer participation. According to the director of the Arizona P&A agency, the stakeholders were chosen from the members of the various governor's planning councils.¹²⁶⁴ The state agencies reported meeting with consumers in November and December 2000 to formulate priorities.¹²⁶⁵ The report contains a list of persons and organizations "invited to participate in Arizona's Olmstead Planning Process." Besides state and quasi-official agencies, this list includes private advocacy and family organizations such as the Arizona Alliance for the Mentally Ill, independent living centers, health care and service providers, the P&A agency, Native American tribes and representatives, People First, and The Arc of Arizona. Additionally, 66 individuals were listed as participants, although their affiliations were not listed.¹²⁶⁶

(3) Plan analysis

The plan covers physical, developmental, and psychiatric disabilities and identified four "common themes" for all state agencies: labor force issues, education and information to consumers, consumer-centered care management, and strengthening provider networks. Additionally, each of the three agencies developed plans around six principles: (1) developing "a comprehensive, effectively working plan," (2) plan development and implementation, (3) assessment of potentially eligible populations [for community services], (4) availability of community-integrated services, (5) informed choice, and (6) state and community infrastructure. These are based on CMS principles. The plan contains a narrative as well as a work plan (Appendix F) listing each action, an end date, and agency comments.

Arizona's plan has many positive aspects. To begin with, it is a prospective-looking document containing actions for the future. While not all of these are as specific as they might be, they do provide some benchmark for evaluating the state's future policies and practices. Second, the plan provides data on how many Arizonans with disabilities are institutionalized. While there is no statement of how many are unnecessarily institutionalized, each agency makes a commitment to conducting assessments and evaluations to ensure against unwarranted institutionalization. Finally, the plan does identify some specific deficiencies in its system that inhibit community placement and expresses a commitment to correcting such deficiencies. Examples include:

11. The Arizona Health Care Cost Containment System (AHCCCS) recognized Arizona does not provide HCBS coverage for the entire period prior to a person's entry into a nursing facility, which means no funding is available to engage in early community transition planning. AHCCCS "is reviewing the possibility of providing prior period coverage."¹²⁶⁷

12. AHCCCS recognized the number of people at risk of nursing home care will grow by 2014, as the state's elderly population doubles, and agreed to research ways to expand concomitantly community-based services.¹²⁶⁸

13. AHCCCS recognized a problem of low wages for community-based direct care workers and agreed to provide a 15.3 percent pay increase in October 2001.¹²⁶⁹

14. To increase consumer control, AHCCCS agreed to develop and implement a plan to allow people with disabilities to recruit, hire, train, schedule, oversee and fire their own personal attendant workers, instead of working exclusively through agencies.¹²⁷⁰ (Many other states have such programs.)

These positive aspects of Arizona's plan reflect a willingness on the part of state officials to discuss difficult (and sometimes litigated) issues confronting community integration, and represent a refusal to rest on the laurels of what has been an above-average record of integrating people with disabilities into the community. With that said, Arizona's plan is deficient in several key areas.

First, the plan is often vague and nondescriptive in that it lacks timelines, outcome benchmarks, or analysis of underlying problems. One striking example is AHCCCS's discussion of assessments of currently institutionalized persons in nursing homes. The plan correctly recognizes that states must "begin their planning process by correcting unwarranted nursing facility placements."¹²⁷¹ However, the plan does not commit to any specific plan to so assess Arizona's nursing facility population and only commits to monitoring and reviewing the current assessment process. This omission is significant, because representatives of Arizona's two largest independent living centers-both of whom participated actively in the Olmstead planning process-reported they knew of no active process to assess nursing home residents on whether they can handle and benefit from community placement.¹²⁷²

This vagueness is also apparent in the Division of Developmental Disabilities section. For example, the action plan for "person centered planning" is to "complete pilot and develop detail[ed] plans for expansion, including options to promote community integration and improve services." This could be a starting point for a dramatic reevaluation of community services, consumer involvement in their direction, and an expansion of individualized, supportive living services, thus allowing Arizona to move beyond the prevailing "institution/group home" dichotomy. But it is not at all clear this is what Arizona meant in its plan; indeed, it is not clear what was meant at all. Further analysis into the current state of consumer involvement in service planning and the extent to which Arizona's community-based services and group homes promote such independence and control would be helpful to determining the types of improvements necessary to the existing person-centered planning system.

Also significant is the plan's lack of attention to expansion of housing and transportation services, which most Arizona disability advocates cited as a major barrier to community integration. This is primarily true of AHCCCS, which is responsible for nursing home placements for people with physical disabilities. Although housing and transportation were identified as significant barriers in moving people with disabilities out of nursing homes, these are not targeted for specific action by AHCCCS. Transportation barriers are not addressed; housing is addressed only tangentially, through increased transition and start-up funding (such as deposit funds and furniture) or financial incentives to existing providers who exceed their targets for HCBS recipients. Only ADHS referenced a specific expansion of affordable housing for people with psychiatric disabilities through enactment of HB 2003.

The lack of affordable, accessible housing is a national problem and not unique to Arizona. The lack of accessible transportation is to be expected in large states like Arizona, where citizens generally must drive their own cars. Given the prevalence and systemic nature of these issues, given the fact that Arizona's plan at least discusses other difficult, systemic barriers such as direct care wages, and given Arizona's above-average record on diverting resources to the community, the omission of housing and transportation issues is particularly striking.

(4) Plan implementation

Since Arizona's Olmstead plan lacks timelines or targets for assessment and placement and focuses on marginal improvements in the community service system, it is not surprising that state officials report that their efforts to implement the plan are on target. The single most significant change reported by advocates is the increase in wages for personal assistants of approximately $2.00 an hour. The increase has resulted in a material difference in availability of personal assistance providers.¹²⁷³

Overall, Texas' long-term care funding, like that of many states, has been slanted toward institutional or nursing home care. In 1997, Texas served 5.66 people per 1,000 of its total population in intermediate care facilities or nursing facilities, while serving only 1.53 people per

1,000 on waiver programs.¹²⁷⁴ Among the states, the difference was by no means the largest in favor of institutional programs-Nebraska, for example, had 12.15 ICF or nursing home participants versus 1.85 waiver participants per 1,000-but it is also important to remember that other states have inverse ratios of community to institutional participants. Oregon, for example, had 7.91 participants per 1,000 people in its waiver programs, but only 0.13 people per 1,000 in ICF or nursing homes.¹²⁷⁵

Low levels of Medicaid utilization also characterize Texas' disability services in the community. In 1997, Texas reported 29,598 Medicaid waiver participants, an unusually low number for the nation's second largest state.¹²⁷⁶ By contrast, Illinois, a smaller state with a large institutional population, reported 36,743 participants.¹²⁷⁷

In 2000, of the 18,564 people with developmental disabilities for whom it provided residential services, Texas served only 39 percent, or 7,313, in community settings of six or fewer persons.¹²⁷⁸ This placed Texas 48th in terms of the percentage of its DD residential clients in community settings, ahead of only New York and Mississippi.¹²⁷⁹ Fifty-eight percent of residential clients with developmental disabilities, or 10,721, lived in institutional settings of 16 or more,¹²⁸⁰ with 5,338 of them in state facilities¹²⁸¹ and 2,919 in nursing homes.¹²⁸² This places Texas on the high end among the states in terms of the number of people in DD institutions. Texas also maintains a higher than average number of ICFs/MR beds. In 1998, it reported 14,304 ICFs/MR beds, or 0.72 per 1,000 people, above the national average of 0.47.¹²⁸³

Overall, Texas serves fewer people with developmental disabilities in residential settings than one would expect for the nation's second-largest state. Texas' residential DD population of 18,584 is far smaller than that of New York (43,224), Ohio (20,093), Pennsylvania (21,948), and Illinois (20,405), all of which have smaller total populations than Texas.¹²⁸⁴ It is difficult to determine exactly why Texas serves so few people relative to other states, but in-home services do not appear to compensate for the difference. In 2000, Texas reported spending close to $50 million to serve 10,395 families in in-home support programs-not the nation's lowest, but lower than Massachusetts, which has a third of Texas' population yet spent $39.5 million to serve 15,010 families (albeit at a lower level of payment per family). (California, the national leader, spent $233.7 million to serve 101,194 families.)¹²⁸⁵

One might also expect to see higher levels of spending in Texas' Medicaid Community-Based waiver program for people with mental retardation to help explain the low level of residential placement. A larger waiver program might mean that more funds are used for services meant to deflect people from residential placement. But that is not the case either. Texas' four MR waivers totaled approximately $248 million in 2001, and it was one of the few states to decrease its MR waiver spending from 2000.¹²⁸⁶ This is not significantly more than North Carolina ($235 million) and far less than Minnesota ($512 million),¹²⁸⁷ both of which have populations one-third to one-fourth the size of Texas. Texas ranked 48th among the states in per capita waiver spending in MR, with only 6,406 people enrolled.¹²⁸⁸ In terms of total community spending, whether Medicaid or non-Medicaid, Texas ranks 43rd among the states.¹²⁸⁹ This relatively low level of spending on MR services may result in a lengthy waiting list for services: it is estimated that more than 41,000 people with developmental disabilities live with caregivers aged 60 or over.¹²⁹⁰

Texas fares better in terms of services for people with physical disabilities. Texas' per capita Medicaid Personal Care expenditures for in-home services were $21.32 in 1997-98, above the national mean of $18.11.¹²⁹¹ In 1998-99, Texas served 87,641 people in community-based personal care programs, or 4.52 participants per 1,000 people-a rate higher than all but seven states and significantly above the national mean of 2.59.¹²⁹² In addition, Texas' largest Medicaid waiver program was its three Adults with Disabilities and Physical Disability waivers, which together totaled approximately $403 million in 2001.¹²⁹³ This represents over two-thirds of Texas' total waiver spending of $692.3 million.¹²⁹⁴ Texas is unusual among states in that it dedicates most of its waiver expenditures to non-MR/DD services.

In 2000, 87,299 people lived in nursing homes in Texas, of whom 74.5 percent, or 65,038, were Medicaid recipients.¹²⁹⁵ While this is a large number of people, it does not exceed the number of people Texas serves in its community-based personal care program, nor is it high compared to other large states. New York, for example, reported 113,546 nursing home residents, of whom 75.1 percent, or 85,273, were Medicaid recipients.¹²⁹⁶

(b) OLMSTEAD PLANNING PROCESS

The Texas Promoting Independence Plan arose out of an executive order by then-Governor George W. Bush, who directed the Texas Health and Human Services Commission to "conduct a comprehensive review of all services and support systems available to people with disabilities" and "focus on ... removing barriers that impede opportunities for community placement."¹²⁹⁷ The commission then appointed the Promoting Independence Advisory Board to develop the analysis called for in the Executive Order. Following this order, the Texas Legislature passed Senate Bill 367, which specifically required the commission and other state agencies to develop the "comprehensive, effectively working plan" called for in Olmstead.¹²⁹⁸ Under SB 367, the Promoting Independence Advisory Board became the Interagency Task Force on Appropriate Care Settings.¹²⁹⁹ The task force consists of six persons from the following nonstate organizations: ADAPT, the Enterprise Foundation, The Arc of Texas, the EveryChild Coalition, the American Association for Retired People, and Diamondback Management Services Ltd. The other eight members represent the following state agencies: the Texas Department of Health Services, the Texas Department of Mental Health and Mental Retardation, the Texas Department of Housing and Community Affairs, the Health and Human Services Commission, the Texas Rehabilitation Commission, and the Texas Workforce Commission.¹³⁰⁰

The task force has submitted two "Promoting Independence Plans," the second on December 2, 2002. Texas' approach to Olmstead implementation is similar to the famous advice given to the reports investigating Watergate: "Follow the money." Unlike many other states, Texas' plan and the legislation that drove it avoids a lengthy (and sometimes hollow) recitation platitudes such as "choice" and "independence." Instead, most Texas initiatives involve an examination of state funding mechanisms and how they can be modified to encourage community placement.

One initiative is House Bill 966, which required the Health and Human Services Commission to quantify the amount of money spent on institutions and then study redirecting such funds to the community if a resident leaves.¹³⁰¹ The commission issued a report on October 25, 2002, which, while not the state's official Olmstead plan, contains key information relevant to the planning and implementation process.¹³⁰² The study excluded state mental health facilities and foster care placements but included all other institutional settings.¹³⁰³ Regarding Texas' waiting list, the study concluded, in a surprisingly frank assessment, that "the wait for community services is long and frustrating for many individuals and their families."¹³⁰⁴

Specifically, 41,198 people are on the list for the state's Community-Based Alternative waiver, exceeding the 30,040 people currently served.¹³⁰⁵ Another 18,901 people are on the waiting list for Texas' Home and Community Based Services waiver, again far exceeding the 4,130 people served.¹³⁰⁶

The study then examined the viability of having per capita funding for institution residents follow those residents into the community. Its significant findings were that (1) while transferring funds would provide cost savings to the state, particularly over the long term, short-term increases in general revenue funds may be needed to cover fixed costs and to help private institutional providers transfer to community-based services, and (2) no legal or statutory barriers existed to implementing "money following the person." The report recommended that any such system begin with state institutions and that any such system ensure against a negative impact on services for remaining residents. The report also recommended assisting private providers to transition from providing institutional to providing community-based services.¹³⁰⁷

Two initiatives in particular make Texas unique in its efforts to comply with Olmstead. The first, Rider 37, is a modification to Texas' method of funding nursing homes. Known as "Money Follows the Individual," Rider 37 "allowed the general revenue used to purchase NF [nursing facility] services to follow the individual into the community and purchase community services."¹³⁰⁸ Unlike other states whose reimbursement systems pay primarily for beds-even when they go unused-Rider 37 pays for individuals by transferring the money needed to serve a person in the community out of the nursing home. Thus, unlike most Medicaid waiver programs, there is no "cap" on community waiver slots funded through this transfer; rather, they "are allowed to increase based on demand."¹³⁰⁹

The plan contemplates that it will spend less money on community placements than it will on nursing home placements. It is not specific concerning the state's use of excess funds (the savings realized from moving a person from a nursing home to a more cost-effective community placement), but suggests they are used at least in part to offset costs associated with increased nursing home vacancies.¹³¹⁰

A parallel legislative initiative, Rider 7, calls for the state to establish "procedures for controlling the number of Medicaid beds and for the de-certification of unused Medicaid beds ..."¹³¹¹ If, under Rider 37, nursing home residents opt to leave for community placements, causing a corresponding drop in nursing home funding, decertification of beds will be a necessary cost-saving measure.

There is a liberating simplicity behind Rider 37. It enables people with disabilities to choose and determine where funds for their care should be expended. On a more practical level, it breaks through the usual cost barriers cited by states by creating a source of funds for community placement that is available on demand and not limited by the number of waiver slots a state decides to seek. Rider 37 also alleviates the concern (articulated by the Supreme Court in Olmstead) that states must maintain expensive institutional facilities while simultaneously paying to transfer people to the community, thus jeopardizing quality of care. It does so by changing the paradigm of the state's disability services and correspondingly streamlining reimbursement so that empty beds and unused facilities do not continue to eat up needed service dollars. Finally, Rider 37 represents an abrupt departure from the "medical model" of Medicaid by placing community and nursing facilities on an equal footing financially.

Rider 37 was implemented in September 2001. Given the potential Rider 37 has for allowing any of the more than 65,000 Medicaid-eligible Texas nursing home residents to move into the community, the Promoting Independence Plan dedicates surprisingly little discussion to it. It states that 1,187 people "were identified as meeting the Rider 37 criteria" and were receiving community services as of November 1, 2002. It also states that the Department of Human Services is "working on capturing the demographics" of the Rider 37 population to help "refin[e] the system that is being implemented in transitioning persons from institutions."¹³¹²

This unique program clearly warrants a more comprehensive review. First, because the number of persons who moved under Rider 37 represents only a fraction of the total nursing home population, it begs the question how it was determined a resident met the "Rider 37 criteria." It would also be useful to know whether this number exceeds or is lower than the number of people who, on average, moved out of nursing homes in years prior to enactment of Rider 37. Finally, the review should examine the fiscal impact of Rider 37 and whether it has allowed the state to increase community disability services and alleviate its waiting list.

The second unique part of Texas' plan is that it contemplates foster care as an area where Olmstead applies. In part, this is because about 185 of Texas' 14,715 foster children are in large state institutions or ICFs.¹³¹³ However, Texas' plan and state legislation address the need to move children out of foster care and into permanent family homes (called "permanency planning"). The state has defined "institutions" to include even group homes that house foster children.¹³¹⁴ Including permanency planning into the state's Olmstead plan appears to be an implicit recognition that, for children, the "most integrated setting" is a permanent family, not a transitional group home even if it is located in the community. Also implicit, but not stated, in Texas' plan is that most if not all of the children in foster care have a disability of some sort. Addressing this issue as part of the Olmstead planning process reflects foresight on the part of

Texas officials and advocates who drafted the plan. Texas should continue these efforts in the following years by tracking the success of its efforts to move foster children into permanent homes or reunite them with their families.

Illinois established its first state mental retardation facility, the Illinois Asylum for Feebleminded Children, in 1865 in Jacksonville, 25 miles west of the state capitol, Springfield.¹³¹⁵ In 1877, owing to overcrowding, Illinois reestablished the asylum as the Lincoln State School and Colony in Lincoln, 30 miles north of Springfield.¹³¹⁶ Illinois opened its second institution in 1918 in Dixon, in northwest Illinois, called the Dixon State Colony for Improvable Epileptics Who Are Not Insane.¹³¹⁷ By 1956, the combined population of the Lincoln and Dixon institutions was 10,240.¹³¹⁸ In the 1960s and 1970s, Illinois developed additional institutions downstate and in the Chicago metropolitan area.¹³¹⁹

As of 2000, Illinois housed 3,221 persons with developmental disabilities in 11 state institutions.¹³²⁰ While this represents a sharp decrease since the 1950s, relative to other states Illinois' institutionalization rate for people with disabilities is quite high. Only three states-California, with a population three times larger, Texas, with a population twice as large, and New Jersey-housed more people in state facilities.¹³²¹ Illinois also placed 4,585 people with developmental disabilities in 130 private institutions (defined as having a population of 16 or greater). Illinois' rate of private institutional placement in 2000 was 38 per 100,000 of the general population-three times the national average and higher than any other state except Iowa and Oklahoma.¹³²² When placements in public and private facilities are combined, Illinois ranked higher than all but five other states in its rate of institutionalization of people with developmental disabilities.¹³²³

In 2000, 1,267 people with developmental disabilities in Illinois were housed in nursing homes, down from 1,971 in 1996. This decrease is attributable in part to a consent decree in a class-action lawsuit, Bogard v. Duffy, which ordered Illinois to reduce the numbers of people with developmental disabilities in nursing homes and develop community-based services. However, the Bogard class does not include any person admitted to a nursing home after 1994. Illinois' placement rate of 10 per 100,000 of the general population is lower than the national average of 13 per 100,000, although it exceeds the average in 24 other states.

For all people with disabilities, particularly physical disabilities, nursing homes are a major source of treatment and care. In 1997, 82,662 of Illinois' Medicaid recipients lived in nursing homes, compared with 30,115 recipients served on home- and community-based services programs for the aged and disabled and Illinois' non-MR/DD waiver programs.¹³²⁴

(b) RESOURCES AVAILABLE FOR COMMUNITY INTEGRATION

Illinois has seven Home- And Community-Based Services waiver programs, which totaled $348,565,403 in 2001.¹³²⁵ Of this amount, roughly half ($175,074,493) was spent on mental retardation/developmental disability services.¹³²⁶ Another $159,151,791 funds mostly in-home care as an alternative to nursing homes, with $89,327,888 dedicated to the persons with physical disabilities waiver and $69,863,903 dedicated to elderly people with disabilities.¹³²⁷ The remainder is dedicated to AIDS services ($8,197,725), services for people who are technology dependent ($279,018), and persons with traumatic brain injury ($5,822,376). The latter is Illinois' newest waiver program, having begun in 2000 with approximately $1.2 million.

Illinois' overall Medicaid waiver funds increased by 16.2 percent from 1995 to 2001. This is an average rate of increase compared to other states. Montana was the only state reporting a decline in overall waiver spending, of 0.37 percent; California's rate of increase was the second lowest at 5.8 percent. States with high rates of increase included Mississippi (74.6 percent) and Hawaii (68.2 percent), although small baseline waiver expenditures in 1995 accounted for these rates.¹³²⁸

In terms of total spending, Illinois compares poorly to other large states such as New York, whose waiver program exceeds $2 billion, Pennsylvania ($878 million) and Ohio ($471 million). Even states with smaller populations reported greater spending on HCBS waiver programs, such as Minnesota ($609 million), North Carolina ($454 million), and Washington ($516 million).¹³²⁹

Illinois' Medicaid expenditures are heavily slanted toward nursing home and institutional care. In 1997, the Illinois Medicaid program spent $105.62 per capita on nursing home services for recipients compared with $10.62 for community-based care.¹³³⁰ Moreover, Illinois housed nearly three times as many Medicaid recipients in nursing homes (82,662) as in the community (30,115).¹³³¹ Nursing home residents are primarily people with physical disabilities, both elderly and nonelderly, but also includes some people with developmental and psychiatric disabilities.

For people with developmental disabilities, Illinois spent $54.02 per capita on institutional residents, as opposed to $9.23 for community residents, and housed twice as many people in the ICFs/MR program (12,518) as in the home- and community-based services (6,066).¹³³² In 2000, the average daily cost of placement in a state institution in Illinois was $279.94-a 6 percent increase since 1996.¹³³³

In terms of using federal matching dollars, Illinois obtained $6.15 per capita in federal funds for home- and community-based services for people with developmental disabilities. By this measure, Illinois ranked 48th in the nation, with only Nevada, Mississippi, and the District of Columbia obtaining fewer federal dollars per capita.¹³³⁴ Overall, federal-state waiver spending constituted 13 percent of Illinois' total community services spending-far below the national average of 33 percent.¹³³⁵ In 2000, out of a total of $1,189,482,024 spent on mental retardation/developmental disability services, $290,729,774, or 24 percent, was unmatched state funds only.¹³³⁶ This exceeded the national average of 18 percent and was higher than all but 10 other states.¹³³⁷

In non-MR/DD programs, Illinois spent $404 million in state-only funds in 1998 that could have received $202 million in Medicaid reimbursement.¹³³⁸ This included funding for vocational rehabilitation, AIDS services, services through the Department on Aging, and community mental health services.¹³³⁹ At the time, Illinois defended its position not to seek federal reimbursement by arguing that expanding Medicaid eligibility for people with disabilities currently served by state-funded programs-a necessary step in obtaining federal matching dollars-would have simultaneously made these people eligible for other covered health care services and thus would have been more expensive. However, one study found that "[t]he decision to use state-only dollars for the elderly and disabled ... appeared to be based on the values of elected officials and not on the fact that there is inadequate amounts of state money available."¹³⁴⁰

(c) ILLINOIS' OLMSTEAD PLAN

(1) The planning process

The initiative for Illinois' Olmstead planning process began in spring 2000 with the Illinois Legislature's overwhelming enactment of H.R. 765. In the words of the minority leader of the Illinois House of Representatives, this act directed the Illinois Department of Human Services "to review its policies regarding the services and supports available to persons with disabilities, specifically ensuring that the most integrated community-based services are being provided and are consistent with the Americans with Disabilities Act."¹³⁴¹ In response to this legislative directive, DHS established a steering committee to set priorities for an Olmstead plan.¹³⁴²

The steering committee consisted of 224 stakeholders, ranging from individual and self-advocates, service providers, state officials, elected legislators, and union representatives.¹³⁴³ The steering committee worked in six working groups, each chaired by two "facilitators": Financing, Universal Pre-Screening and Community Reintegration, Housing, Service Coordination and Public Policy, Community Infrastructure, and Best Practices.

The steering committee released its "Report on Illinois' Activities In Response to the Americans with Disabilities Act in Light of the Olmstead Decision" on December 20, 2000. The report emphasized that it "is not the 'comprehensive effectively working plan' that was contemplated by the Supreme Court [in Olmstead]. Rather, it is merely a first step in the process of Illinois coming into compliance with the ADA and the Supreme Court's decision in Olmstead."¹³⁴⁴ Each of the six working groups presented a chapter with analysis and recommendations for compliance.

Despite the self-imposed limitation, the steering committee report is a comprehensive and thoughtful set of recommendations on what Illinois must do to comply with the ADA's integration mandate.¹³⁴⁵ The report, however, made clear the state would have to specify how it would fulfill these recommendations. Only then would the planning process be fulfilled. Because the report's recommendations serve as a useful benchmark for Illinois' eventual Olmstead "plan" (released in April 2002), its findings and recommendations are summarized below.

The Financing Working Group, facilitated by Valerie Brooks of the Illinois Department of Public Aid, Illinois' single state agency for Title XIX services, and Reta Hoskin of the Illinois Office for Developmental Disabilities, recommended increased funding for community services to achieve integration, consumer control, and quality and availability of care.¹³⁴⁶ Notably, the Financing Group reported that Illinois' HCBS waiver programs were not only too small, but also that Illinois failed to use all the waiver slots it was allocated. The report documented the following underutilization of waiver slots:

The Financing Group recommended expansion of the seven waiver programs and that Illinois "remove all obstacles to full participation in its current waiver programs, including adjusting service cost maximums and/or determination of needs scoring and other eligibility criteria such as income restrictions which limit the level of participation."¹³⁴⁷ The Financing Group's recommended "action steps" included Illinois assessing the number of people with disabilities in Illinois who were waiting for community services (including persons exiting the special education system) and listing the type and quality of services that must be developed to support persons with disabilities in the community.¹³⁴⁸

The Universal Pre-Screening and Community Reintegration Working Group focused on the need to educate persons with disabilities and their families on community-based options and to increase person-centered planning to enable persons with disabilities to determine, as much as possible, the nature and direction of their services. It recommended consumer choice in the size and location of services and a shift from the "medical model of 'taking care of' people with disabilities to an independent living model of self-directed assistance and services as needed."¹³⁴⁹ The report also recommended using the prescreening of persons with disabilities as a method of educating people with disabilities and their families on community-based alternatives, as well as increased education of treatment professionals on community alternatives.¹³⁵⁰

The Housing Working Group recommended Illinois increase the availability of accessible, affordable housing to people with disabilities. Specific measures included expanding state law to meet and exceed the accessibility requirements of federal law, pursuing of funding alternatives that promote integrated housing, and expansion of rental assistance, home modification and home purchase programs. Like the Financing Group, the Housing Group recommended expanding Illinois' Medicaid waiver funding.¹³⁵¹ The Housing Group also recommended issuing tax-exempt bonds as a source of financing for low-income community-based housing for people with disabilities.¹³⁵²

The Service Coordination and Public Policy Working Group identified the following policy priorities for compliance with Olmstead: (1) removing institutional bias from state funding and payment systems, (2) eliminating barriers to community services based on age or severity of disability, (3) ensuring that services in one waiver program are available in other waiver programs, (4) ensuring comprehensive prescreening consistent with professional judgment and including treating professionals and advocates, (5) a waiting list that moves at a reasonable pace for any person not funded for community placement, and (6) a standing committee of stakeholders to monitor implementation.¹³⁵³

The Community Infrastructure Working Group identified four goals for Illinois: (1) to present a draft "Olmstead plan" detailing the level of Illinois' compliance with Olmstead, (2) to identify people in institutions who wish to move to the community and identify the services needed to fulfill that wish, (3) to provide transitional services to people who want to leave institutions, and (4) "[m]oney must follow the individual"; that is, "if an individual is eligible for a Medicaid-funded 'bed' in a nursing home, that Medicaid funding should be available for community services for that individual if they so choose."¹³⁵⁴

Finally, the Best Practices Working Group identified at innovative strategies in community services which could be implemented in Illinois. In the area of self-determination, the report cited the Robert Wood Johnson Foundation Self-Determination Initiative in 19 states. Additionally, the Cash and Counseling Project, active in four states, was cited as an example of consumer control of Medicaid funds and services.¹³⁵⁵ The group also explored professional and international best practices standards in the areas of informed choice, open and improved communications, and successful transition into the community.¹³⁵⁶

(d) ANALYSIS OF ILLINOIS' OLMSTEAD PLAN

Using the Steering Committee Report as its guide, Illinois released its "Community Living and Disabilities Plan" in April 2002. The plan included submissions from the Office of Developmental Disabilities (ODD), the Office of Mental Health (OMH), the Office of Rehabilitation Services (ORS), the Department on Aging (DA), the Illinois Housing Development Authority (IHDA), and the Department of Public Aid (DPA). The plan opened with a letter from Illinois Governor George Ryan, who pledged his commitment to "fostering the independence of people with disabilities and their participation in community life." He continued, "We will continue to alter State facilities to a point where as many of the residents as possible can have a greater say in the care they receive and where as many as possible can be housed in community-based living arrangements" and stated "the importance of providing a living wage to those who care for people with disabilities. ..."

Unfortunately, Governor Ryan's opening comments is the only part of the "plan" that looks forward. Indeed, the word "plan" is a misnomer; the "Community Living and Disabilities Plan" is in fact a defense of existing policies and practices. Its 98 pages are practically devoid of any analysis of Illinois' compliance with Olmstead, including any calculation of the number of people who are unnecessarily institutionalized or could handle and benefit from community services. Illinois admits to no "waiting list" for community services of any type. Consequently, the plan identifies no barriers impeding people with disabilities from moving into or remaining in the community, and there is necessarily no analysis of what future action or development of services Illinois would need to meet the demand for community services (let alone the quality of such services). The dichotomy between the urgent needs and priorities identified by the steering committee and the "don't worry, be happy" attitude of the official "plan" could not be starker.

For example, in response to the steering committee's call for effective prescreening programs to eliminate unnecessary admissions into institutions and nursing homes, ODD simply described its existing program. There was no analysis of its effectiveness or suggestions for improvement. OMH similarly reported simply that it screens 90 percent of individuals admitted to State hospitals and nursing homes. Notably, OMH reported that 91 percent of nursing home screenings result in a determination of need for a nursing facility. Again, the report is devoid of any discussion as to whether such screenings effectively identify people who can live in the community, inform them of their rights, and redirect them to community services. More important OMH never asks whether the overwhelming rate of nursing home recommendations are affected by the availability, or lack, of community alternatives.

Another example is with wages of community care workers. In contrast to the governor's call for a "living wage," ORS uses the federal minimum wage of $5.15 per hour as the comparative benchmark for the wages of in-home personal attendants, which ORS sets at $7.00 per hour. "PA provider rates have consistently been somewhat higher than the Minimum Wage," ORS concludes without further elaboration. The term "living wage" is not even mentioned, let alone defined. ODD reported that community care workers received a $1.00-per-hour wage increase in FY 2001, with ample credit given to Governor Ryan (e.g. "the Ryan Administration made increasing these wages a top priority this past legislative session"), but again, there is no mention of the term "living wage" or whether the extra $1.00 helps to constitute one. Nor is there any discussion of current rates of turnover and vacancies, which have been integral to other examinations of the effect of the level of community wages and benefits on availability and quality of care.

The plan's ultimate shortcoming-its failure to examine, let alone acknowledge, the extent of Illinois' noncompliance with the ADA's integration mandate-is most evident in its discussion of the core issue surrounding Olmstead-whether people with disabilities are unnecessarily segregated and isolated due to a lack of community services. ODD's response is typical of the other state agencies. In response to the Financing Working Group's recommendation to "implement the 'most integrated setting' mandate of the ADA," ODD listed its ongoing activities developed prior to the plan's creation. These were creation of 250 Community-Integrated Living Arrangement (CILA)¹³⁵⁷ placements in FY 2002, of which 150 are for "community emergencies"; downsizing of the troubled Lincoln Developmental Center from 378 to 100 people by 2002, with 68 residents moving into CILA placements by 2003; moving 23 residents of Singer Mental Health and Developmental Center into CILAs; and creating "four small homes on the LDC [Lincoln Developmental Center] campus." The latter program, whose definition as a "community" service is dubious at best, is the only one that ODD has specific plans to expand beyond the next fiscal year. ODD states it plans to open such homes at Jacksonville, Choate, and Shapiro Developmental Centers "in FY04 and beyond."

The proposed budget for FY 2003, which ODD noted was "subject to change due to economic circumstances," listed 110 "community emergency" CILA placements and a "flexible transition account created to fund the placement of 100 individuals transitioning from SODCs [institutions] into CILAs."¹³⁵⁸

Do these initiatives meet the need of everybody who desires and could benefit from community services, whether in an institution, a nursing home, or living with aging parents and families? Do they ensure services of sufficient quality to offer a realistic, stable alternative to institutional care? The "plan" provides no answers. Its silence on these and other questions invites the reader into the ultimate tautology: to allow the amount of effort to define the need. Illinois had 3,221 people with developmental disabilities in state institutions and 4,585 in private institutions (16 persons or more) in 2000. How many of them could and want to live in the community? What services would need to be created to move them into the community? The plan is silent, except for a general description of how community placements are supposed to be determined. One expert has estimated that 28,693 Illinoisans with developmental disabilities live with caregivers aged 60 or older, and will thus soon need out of home care.¹³⁵⁹ Are the few hundred planned "community emergency" CILA placements sufficient to meet this need? It is a question ODD deftly ignores.

This lack of analysis and failure to plan for the future pervades every section of the plan. OMH's answer to the steering committee's recommendation to increase funding for community services is to simply report on the decline in the state hospital population since 1987. The decline is significant-47 percent-but still leaves 1,878 people in state hospitals in 2001, again with no analysis of their ability to live in the community; moreover, there is no comparison to other states, which also saw declines in their state hospital populations.

A second issue is the link between prescreening at admission and OMH's reported decline in nursing home placements. OMH reports that nursing home placements from state hospitals declined by half from 1994 to 2001, and suggests this is an improvement. But it never analyses what caused the decline. OMH also uses its prescreening programs to justify current nursing home placements, but does not credit this program for the decline in nursing home placements. It would have been interesting for OMH to have evaluated the prescreening results of those people who would have been admitted to nursing homes in 1994 but would not be today. But that question presents OMH with a dilemma: if it credits prescreening, it could justify this only by admitting the prescreening system was flawed in 1994 and by showing enactment of substantial improvements by 2001. On the other hand, if it credits expansion of services, OMH would have to admit that availability of care, and not the prescreening process, drives nursing home admissions. Not willing to admit any flaws, past or present, OMH simply ignores this question.

This is not merely an academic exercise. A candid review of how OMH redirected 300 more people from state hospitals to the community, instead of nursing homes, might have revealed how Illinois could overcome the barriers that prohibit the thousands of institutionalized persons with mental illness from living in the community. Perhaps, as some have argued, this analysis would have revealed a segment of the institutionalized population for whom the barriers to community life are insurmountable. But Illinois' "plan" will never tell. Because of its steadfast unwillingness to admit that any such barriers exist, OMH-like every other agency that contributed to the "plan"-has foresworn an opportunity to enlighten and guide Illinois' leaders on ways to integrate its citizens with disabilities into society.

In short, Illinois' "plan" does nothing to inform its citizens of the state's current compliance with the ADA's integration mandate nor what they can expect the state to do in the future with its disability service system. As such, the plan violates both the spirit and the letter of President Bush's New Freedom Initiative.

7. MICHIGAN

(a) STATE OF COMMUNITY SERVICES PRIOR TO OLMSTEAD

With a population of 9.8 million,¹³⁶⁰ Michigan will soon be the first large state to close its state institutions for people with developmental disabilities. Michigan closed 12 state DD institutions from 1998 to 2001.¹³⁶¹ As of 2000, Michigan's last state institution housed 250 people, down significantly from 6,047 in 1977.¹³⁶² This number was reduced to approximately 160 in 2002.¹³⁶³ Michigan serves 91 percent of its residential developmental disabilities population in homes of six or fewer people, the fifth-highest percentage in the nation.¹³⁶⁴ Michigan also has no private ICFs/MR, although in 2000 it housed 869 people with developmental disabilities in nursing homes.¹³⁶⁵ This has occurred despite an official policy discouraging nursing home placement for people with developmental disabilities.¹³⁶⁶ Indeed, were it not for people placed in nursing homes, nearly every person in Michigan with developmental disabilities who receives out of home care would be served in a community-based setting.

Michigan was one of the first states to explore community integration for people with disabilities in the early 1970s. Today, Michigan spends 95 percent of its DD budget on community services.¹³⁶⁷ Michigan's spending for DD community services was $3.29 per $1,000 of state personal income, exceeding the U.S. average of $2.75 but significantly lower than most New England states, Minnesota, New Mexico, New York, West Virginia, and Wyoming.¹³⁶⁸ For the past 13 years, Michigan has had a Home and Community-Based Services waiver for developmental disabilities that served 8,300 people in 2000.¹³⁶⁹ Michigan had a high rate of utilization of Medicaid funds for community services: only 6 percent of its DD community services budget, or $55 million, was unmatched.¹³⁷⁰ Since 1999, however, Michigan's MR waiver spending, which had grown significantly since 1996, declined significantly, from $323.2 million in 1999 to $226.6 million in 2001.¹³⁷¹

Michigan has increased waiver slots for people with physical disabilities, from 4,000 in 1998 to 15,000 in 2000.¹³⁷² This waiver funding totaled approximately $182 million in 2001.¹³⁷³ Michigan's MI Choice waiver for Elderly and Disabled served 14,400 people in 2000.¹³⁷⁴ In addition, Michigan spent $183.6 million in 2001 on personal care in its Medicaid Home Help program.¹³⁷⁵ This program served 37,200 people in 2000.¹³⁷⁶ Michigan also reported serving 55,046 people in personal care on its state option in 1998-99, and its state and Medicaid personal care spending totaled $210.3 million in 1997-98.¹³⁷⁷ On a per capita basis, Michigan's personal care expenditures exceeded the national average and were among the top third of states.¹³⁷⁸

While expenditures for these services have increased significantly since 1996, they pale in comparison to Michigan's spending on nursing homes, which totaled $1.7 billion in 2001 and has increased by nearly $700 million since 1996.¹³⁷⁹ These increases have occurred even though the total number of nursing home beds has remained fairly constant.¹³⁸⁰ In September 2000, Michigan housed 28,270 Medicaid recipients in 436 nursing homes.¹³⁸¹ Michigan's nursing home beds significantly exceed the national average in terms of beds per 1,000 people (37.8 vs. 25.5).¹³⁸²

(b) OLMSTEAD PLANNING

Michigan has not developed an Olmstead plan. According to Michigan advocates, however, during the 2002 election campaign Jennifer Granholm, the Michigan Attorney General and Democratic gubernatorial candidate, promised to establish an "Olmstead Task Force" if elected.¹³⁸³ (Ms. Granholm won the election.) Some disability advocates described Michigan as "resting on its laurels" for its integration of people with developmental disabilities. While commendable, this ignores the need for action concerning people with physical and psychiatric disabilities.

In June 2000, the Michigan Department of Community Health's Long Term Care Work Group issued a report entitled "Long Term Care Innovations: Challenges and Solutions." The report does not purport to be Michigan's Olmstead plan, and the work group was formed prior to the Olmstead decision. Nevertheless, the report references Olmstead and some of its recommendations are relevant to Olmstead compliance.

The work group included no one from the disability community. It consisted of three officials from the Department of Community Health (including its director, James Haveman), one from the Department of Aging, two state senators, and two state representatives. The report concerns the provision of long-term health care for the general population and is not specific to downsizing institutions. It extensively explains the MI Choice program and Michigan's move to a managed care system. However, the report's recommendations, while endorsing person-centered planning and community integration, are fairly general and nonspecific. For example, the report recommends that "[r]esidential long term care providers should consider designs that provide small home-like groupings of residents."¹³⁸⁴ Another section of the report finds major problems in recruitment and retention of staff due in part to "low pay and poor benefits".¹³⁸⁵ Yet of the 11 recommendations to solve this problem, not one concerns raising wages or benefits, while the first two recommendations are for a "public image campaign" and a "recruitment campaign" to enhance the image of direct care jobs.¹³⁸⁶

Two lawsuits in Michigan have challenged the state's compliance with Olmstead. The first, Eager v. Engler,¹³⁸⁷ concerns the MI Choice waiver. The lawsuit, filed on March 19, 2002, alleges that the state has frozen participation in the MI Choice program to 11,000 people, driving others who need services into nursing homes. Another case, Olesky v. Haveman, challenged the state's placement of people with developmental, neurological, and psychiatric disabilities in nursing homes.

8. MISSISSIPPI

Mississippi's Olmstead plan, which was published shortly after we chose our sample of states to examine more closely, is widely regarded as exemplary-one of the two or three best in the country. Thus, analysis of the Mississippi plan and the planning process that produced it is important as a way to take the measure of the states' response to Olmstead.

(a) STATE OF COMMUNITY SERVICES PRIOR TO OLMSTEAD

In developmental disabilities, Mississippi ranks 47th in the nation in community fiscal effort-the proportion of statewide personal income devoted to community services.¹³⁸⁸ Mississippi had no small community-integrated residential services until 1992, when it began to develop small group homes. From 1992 to 2000, the number of persons living in such programs increased more than seven-fold-from 247 to 1,867.¹³⁸⁹ Also in 1992, Mississippi began to develop supported living options for people with developmental disabilities, and by 2000 was serving 462 persons in such settings. Personal assistance was added to the array of services in 1997, and 282 persons with developmental disabilities benefited from those services in 2000.¹³⁹⁰

In spite of the relative increase in home- and community-based services during the late 1990s, by 2000, Mississippi still ranked virtually at the bottom-50th-of the states in its use of the home and community based waiver. Only 2 percent of the state's total mental retardation/developmental disabilities spending was devoted to Home And Community-Based waiver services, and the average waiver cost per recipient, $5,214, was by far the lowest in the nation.

Between 1990 and 2000, the number of persons with developmental disabilities living in congregate settings for 16 persons or more actually increased by 28.7 percent-from 2,286 to 2,943. Most of the increase, however, was in the population of persons with developmental disabilities living in nursing facilities, which was reported to be 200 in 1990 and 900 in 2000. It is possible that the progressively higher numbers during that ten-year period represented better identification and reporting of persons with developmental disabilities in general nursing facilities rather than an increase in absolute numbers. The number of persons in large state developmental disabilities institutions decreased only slightly, from 1,491 to 1,382, while the number of persons in large private ICFs/MR grew from 595 to 661.

Contrary to trends in developmental disability services in the nation as a whole, during the 1990s, Mississippi developed large, state-operated group homes certified as ICFs/MR for 7 to 15 residents. By 2000, the state was serving 489 persons in such facilities.¹³⁹¹ Advocates report a serious dearth of community providers, professionals with relevant expertise, housing, and general support such as health care and mental health services.¹³⁹²

In mental health services, Mississippi's services also are heavily institutional and coercive. The state maintains 1,381 inpatient beds in four state-operated psychiatric hospitals. More than 97 percent of the persons who fill those beds are committed involuntarily. However, hospitalization for more than 90 days is relatively uncommon. At the end of 2001, only 42 state psychiatric hospital residents had been hospitalized for more than a year.¹³⁹³

The state provided traditional outpatient services through a network of community mental health centers. The state funded only two consumer-operated programs for a total of $115,000 and a single pilot program in supported employment.¹³⁹⁴ Mississippi allows commitment to outpatient services without a finding of dangerousness, and consumers can be recommitted for "noncompliance" with a prescribed medication regimen or other medical directive.¹³⁹⁵ At the time Mississippi's Olmstead plan was developed, the state claimed that more people were waiting for inpatient services (52) than for community residential and nonresidential mental health services (28).¹³⁹⁶

Prior to plan development, Mississippi offered few services for elders and persons with physical disabilities other than nursing facility care. Spending per elderly beneficiary for long term care was the lowest in the nation ($3,593). The proportion of long-term care spending for the elderly for nursing facilities was the highest in the nation (98.6 percent), yet in 1997, the legislature approved 1,500 new nursing facility beds. Prior to plan development, Mississippi maintained 18,585 skilled nursing facility beds and 5,447 personal care home beds, both licensed and unlicensed.¹³⁹⁷

The state's Elderly and Disabled waiver provides a maximum of six hours of personal assistance a day, and no assistance on weekends.¹³⁹⁸ Beginning in 1999, social workers from agencies under contract with the state have been required to explain the alternatives available under the waiver to persons entering nursing facilities. A pre-admission screening system proposed by a state senator from Hattiesburg was rejected by the legislature as too extreme a limitation on nursing facility admission.¹³⁹⁹ In any case, waiting lists are long-people are placed on waiting lists simply to be evaluated, and the wait for an evaluation can be up to two years¹⁴⁰⁰-and advocates report that people with disabilities are forced to enter nursing facilities because of the absence of community services.¹⁴⁰¹ An Independent Living waiver provides up to 24 hours of service a day, but only 277 persons were served under this waiver as of September 2002. An Assisted Living waiver serves about 40 people in facilities licensed by the Mississippi Health Department, ranging in size from 30 to 80 beds.¹⁴⁰²

Mississippi has the highest rate of mortality from traumatic brain injury (TBI) and the highest rate of TBI in the nation.¹⁴⁰³ As in most states, people with spinal cord injury or acquired brain injury encounter great difficulty finding services. The state has a trust fund mandated by state law and administered by the Department of Rehabilitation Services, funded by a percentage of all fines levied against drivers, with state dollars used to leverage a federal match. Unlike the practice in Florida, which has a similar fund, programs for persons with spinal cord or brain injury do not receive an appropriation every year from the fund, but must submit a grant application, which the state may or may not agree to fund.¹⁴⁰⁴

Additional indicators of Mississippi's heavy institutional bias can be seen in the pattern of state Medicaid expenditures prior to plan development. Medicaid expenditures on nursing facilities rose by 42 percent from 1996 to 2001, while Medicaid home care expenditures declined by 22 percent during the same period.¹⁴⁰⁵ Although Mississippi increased spending on Home and Community-Based waiver services quite dramatically in the late 1990s, a great unmet need for these services existed at the time of Olmstead plan development, with more than 3,700 persons waiting for services.¹⁴⁰⁶ Mississippi does not offer personal care as an optional Medicaid service.¹⁴⁰⁷

There is broad agreement among Mississippi stakeholders that transportation is the single biggest barrier to community integration other than funding.¹⁴⁰⁸

(b) THE PLANNING PROCESS

In June 2000, the governor of Mississippi appointed the Division of Medicaid as the lead agency for Olmstead planning. Other state agencies, including the Departments of Health, Mental Health, Education, Human Services and Rehabilitation Services, also agreed to come to the table.¹⁴⁰⁹ The agencies' initial discussions focused on finding out what services currently were available and what additional services were needed. As these discussions proceeded, "it became clear that persons with disabilities, as well as persons in the communities where they live (or would like to live), needed to have a strong voice in these discussions."¹⁴¹⁰ Consumers and other stakeholders were invited to join the discussions under the rubric of a coalition called Mississippi Access to Care, or MAC.¹⁴¹¹ The advocates we interviewed suggested that Mississippi decided to draft an Olmstead plan because state officials considered that they were vulnerable to litigation and that an Olmstead plan would be an effective defense.

In any event, MAC held its first meeting in November 2000, and set as its goal the development of a comprehensive plan to present to the state legislature by 2002.¹⁴¹² Participants consisted of advocates for elders, people with mental illness, developmental disabilities and physical disabilities, including the AARP, SILC, P&A association, Area Agencies on Aging, the Developmental Disabilities Council, and other interested organizations, including the Housing and Urban Developmental agency, community mental health centers, nursing home associations, planning and development districts, and a legal services organization.¹⁴¹³ According to the Division of Medicaid, 42.3 percent of participating stakeholders represented people with developmental disabilities, 23.5 represented people with physical disabilities, 13.7 represented elders, 11.1 percent represented people with visual disabilities, 1.7 represented people with addictions, and 62.6 percent represented people with mental disabilities (obviously, some stakeholders fell into more than one category).¹⁴¹⁴ Although elders were underrepresented and people with developmental disabilities were overrepresented in the planning group, compared to the planning process in other states, the stakeholder group was relatively inclusive. The representation of housing and education agencies as well as local planning and development districts and legal services organizations also contributed positively to Olmstead planning.

The coalition obtained data for the planning effort by distributing a statewide survey to identify needs and services available and by holding a series of 14 public meetings in early 2001. The state reported that 5,318 questionnaires were received and 250 persons attended the public meetings.¹⁴¹⁵ An advocate who attended most of the public meetings reported that they were not publicized well and that attendance was poor, in part because of the huge transportation barriers confronting people with disabilities in Mississippi.¹⁴¹⁶ Another advocate reported that although the planning process did include consumers and advocates, "the problem was that we were not listened to."¹⁴¹⁷ A representative of Arc, Mississippi, reported that when she served on a MAC planning committee, she suggested that evaluators go into nursing facilities to get input from the people who live there, and that the representatives from state agencies were not receptive to this idea.¹⁴¹⁸ In any case, from the data collected, common themes were drawn that formed the basis for work groups to develop the plan: Consumer Education, Database Development, Housing, Population Identification, Simplification and Standardization, Transition from Institution to Community and from School to Adult Life, and Transportation.

To formalize support for the planning process, the legislature enacted H.B. 929, which mandated the development of a comprehensive state plan to provide services to people with disabilities in the most integrated setting appropriate. The bill was signed into law on March 23, 2001 and requires that the plan include:

• An estimate of the number of people with disabilities who need or will need services;
• An estimate of the appropriations necessary over the course of the proposed schedule to accomplish the proposed plan; and
• A goal that the state will have community services available for all persons with disabilities that are recommended by professionals and requested by persons with disabilities by June 30, 2011.

The bill also outlined the principles that should guide plan development, including self-determination; empowerment of people with disabilities and their families; services built around natural support; integration to the greatest extent possible; coordination, individualization, flexibility, and cultural sensitivity.¹⁴¹⁹

The focus groups finished their work in June 2001, and a plan drafting committee composed of agency representatives, advocates and a private consultant, used the focus group submissions and other information to draft the comprehensive plan. The draft was reviewed at a public meeting on August 30, 2001, after which it was finalized and submitted to the state legislature in September 2001.¹⁴²⁰

The plan's purpose and vision statement is clear: "to create an individualized service and support system that enables individuals with disabilities to live and work in the most integrated setting of their choice. It is our vision that all Mississippians with disabilities will have the services and supports necessary to live in the most appropriate and integrated setting possible."¹⁴²¹ Many of the goals in the plan are designed to carry out this overall vision. A unique feature of the Mississippi plan, and probably the main reason the plan is widely considered an exemplar of Olmstead planning, is that implementation of each goal is costed out over a ten-year period so that the plan can be incorporated into state budgets and legislative appropriations over the course of the implementation period.

The planning group projected that implementation of the plan would require a total of $52.7 million in new state dollars (Mississippi's federal Medicaid match is over 75 percent, the highest in the nation) in 2003, $74,793 in 2004, with budget increases tapering after 2004 to $32,977 in 2011, the last year of plan implementation.¹⁴²² Surprisingly, however, the plan contains no budget estimates for anticipated savings as expenditures for more costly institutional services are reduced. The plan projects that an additional 750 persons a year would be served under the elderly and disabled waiver over a five-year period, which would reduce the current waiting list to zero, and that the number of persons served under the Independent Living waiver, which provides case management and personal assistance services, would be increased to 2,500 over the same period, although it is impossible to tell from the data in the plan whether the increase would meet the demand for waiver services among persons who currently are institutionalized in nursing facilities as well as community residents who are waiting for services.¹⁴²³

The goals set forth in the Mississippi plan include the following:

I. Information/Data Development

Goal 1: Develop a data collection system to identify the services received and needed by people with disabilities.

Goal 2: Develop an Electronic Service Resource Directory.

Goal 3: Designate, by legislative mandate, the responsible party for MAC plan data collection.

II. Communication and Education

Goal 1: Promote the plan and legislative mandate.

Goal 2: Provide public information on available services.

III. Training

Goal 1: Provide staff development in person-centered planning.

Goal 2: Provide staff development in coordinated support.

IV. Individual Assessment

Goal 1: Use assessments (required of all service provider agencies) to prevent out of home placement and facilitate community re-entry.

V. Transition from Institutions

Goal 1: Advise people in nursing facilities of the available community-based alternatives and "allow them the option to choose the most integrated setting of their choice."

VI. Transportation

Goal 1: Create transportation opportunities.

VII. Community-Based Housing

Goal 1: Increase available information regarding community-based housing options.

Goal 2: Increase the availability of safe, affordable, accessible housing options.

Goal 3: Provide support services to people with disabilities in community-based housing.

Goal 4: Increase funding sources for people with disabilities for independent living in the community.

Goal 5: Expand community-based housing options.

VIII. Home and Community-Based Waiver Program

Goal 1: Expand the number of persons served and the menu of authorized services by increasing state general funds (Elderly and Disabled Waiver; Independent Living Waiver; Mental Retardation/Developmental Disability Waiver; Assisted Living Waiver; Traumatic Brain Injury/Spinal Cord Injury Waiver).

Goal 2: Apply for waivers to serve populations not served by current waivers (Serious Emotional Disturbance Waiver for children under 21).

IX. Employment and Vocational Services

Goal 1: Increase the number of persons with retardation/developmental disabilities in work activity services by 250.

Goal 2: Increase supported employment to persons with retardation/developmental disabilities by 500.

Goal 3: Expand vocational education.

Goal 4: Increase persons receiving employment/vocational services through the Department of Rehabilitation Services' supported employment program.

Goal 5: Increase the total number of persons served by the above program.

Goal 6: Increase the number of persons served through the Vocational Rehabilitation program.

X. Prevention and Early Intervention Services

Goal 1: Increase mental health preventive services by 400 children.

Goal 2: Increase early intervention services for children with retardation/developmental disabilities by 400.

Goal 3: Increase the number of children services through the Infant and Toddler program from 2500 to 3500.

Goal 4: Increase EPSDT screening to reach a 90 percent participation rate by 2011.

Goal 5: Increase the Child Find program.

XI. Diagnosis and Evaluation (of persons with mental illness)

Goal 1: Expand psychological evaluation services.

Goal 2: Provide flexible funding for wraparound services for children with serious emotional disturbance.

Goal 3: Provide funding to review 47,000 service plans for children and adults with mental illness.

Goal 4: Fund bio-psychological assessments of greater thoroughness.

XII. Day Treatment

Goal 1: Provide school-based day treatment services to an additional 2000 children.

XIII. Outpatient Therapy

Goal 1: Expand outpatient therapy services to 10,000 more children.

Goal 2: Expand outpatient services to an additional 13,400 individuals and families.

XIV. Medication Evaluation/Monitoring

Goal 1: Expand number of children receiving medication monitoring by 5,000.

Goal 2: Expand medical evaluation/monitoring to an additional 10,000 adults.

XV. Therapeutic Nursing Service

Goal 1: Expand children served by 2500.

Goal 2: Ensure funding for a school nurse for every school building.

XVI. Respite Services

Goal 1: Provide intensive respite care to an additional 803 consumers.

XVII. Therapeutic Foster Care

Goal 1: Expand services to 250 additional children.

Goal 2: Expand therapeutic treatment homes by 450 children.

XVIII. Therapeutic Group Homes

Goal 1: Increase the number of children served by 120.

Goal 2: Increase adolescents served by 80.

Goal 3: Increase homes for children in legal custody of MDHS/DFCS.

XIX. Making a Plan (MAP) Teams

Goal 1: Increase resource for MAP teams to allow for purchases of services such as respite.

XX. Psychosocial Rehabilitation/Day Support Programs

Goal 1: Expand the Clubhouse model to serve an additional 1500 adults with mental illness.

Goal 2: Expand Day Support programs by 2000 persons.

XXI. Case Management

Goal 1: Expand and appropriately utilize case management services.

XXII. Medication Purchase

Goal 1: Expand medication purchase program by $1.5 million.

XXIII. Family Education and Support

Goal 1: Expand family and consumer education and training by 8,5000 contacts.

XXIV. Services for Elders with Serious Mental Illness

Goal 1: Increase services to elders with mental illness by 3,000.

XV. Adult Day Care Services

Goal 1: Expand adult day care services to 180 adults with Alzheimer's disease or other dementia.

XVI. Crisis Centers

Goal 1: Operate seven 17-bed crisis center programs for adults with serious mental illness.

Goal 2: Add 3 crisis response programs for children.

XXVII. Intensive Residential Treatment

XXVIII. Intensive In-Home Treatment

Goal 1: Expand by 450 children who are in the custody of MDHS/DFCS

XXIX. Education

Goal 1: Provide a free, appropriate public education to eligible children.

Goal 2: Pursue full federal funding for IDEA.

Goal 3: Fund transition coordinators for high school aged youth with disabilities.

Goal 4: Provide technical assistance and training to parents of students with disabilities.

XXX. Home and Vehicle Modifications

XXXI. Division of Community Services

Goal 1: Expand services.

XXXII. Services to Vulnerable Adults

Goal 1: Expand services by 46 adults.

Goal 2: Expand homemaker services.

Goal 3: Provide in-home sitter services.

Goal 4: Create "Public Guardianship Assistance Program" for those who cannot afford a private attorney, to seek conservatorship for persons who need a court appointed guardian.

XXXIII. Department of Rehabilitation Services

Goal 1: Increase the number of persons served through the state Attendant Care program by 618.

Goal 2: Increase the number of persons served through the Department of Rehabilitation Services' Independent Living program by approximately 25,000.

To date, the Mississippi plan has not been implemented. Virtually everyone we interviewed attributed the absence of implementation to the state's Medicaid budget deficit, estimated in 2002 at around $180 million.¹⁴²⁴

Nevertheless, the exhaustive list of goals set forth above raises the question of whether the plan was not doomed to failure by its very comprehensiveness. The plan has an everything-but-the-kitchen-sink quality, combining goals for the creation of community services with goals for implementation of a wide variety of entitlements ranging from Early Periodic Screening, Diagnosis and Treatment (EPSDT) to vocational rehabilitation to Child Find to the provision of services to infants, toddlers, preschoolers, and school-age children that have only a tangential relationship to Olmstead implementation and that the state is obligated to provide even in the absence of an Olmstead plan. While there is some benefit to cataloging the scope of the state's obligations to all persons with disabilities, under all federal statutes, in a single comprehensive document, it does not serve the interests of institutionalized persons to claim as Olmstead implementation the fulfillment of other federal mandates to serve persons with disabilities.

Mississippi advocates are critical of the plan for other reasons. One criticism is that the plan does not call for redirecting funds from nursing facilities and does not solve the basic problem that a high percentage of the state's long-term care budget is allocated to nursing facilities. Another criticism is the ten-year time frame for implementation. Advocates expressed the view that the state agreed to develop the plan in order to secure the consent of the disability community to a ten-year wait for the creation of community services.¹⁴²⁵ Outside the planning process, advocates from the independent living movement drafted legislation (H.B. 2011), which passed in 2001 and required that people with disabilities receive a choice of institutional or community services by 2004. However, the legislature changed the time frame so that the change does not have to occur until 2012.¹⁴²⁶

Advocates noted that the plan is a "bricks and mortar" plan-a plan to build new facilities, not to support people in their own homes and communities. For example, the plan provides for spending only a few hundred thousand dollars to support home ownership and more than $50 million to build new ICFs/MR and group homes-about $80 million on congregate facilities if the costs of supporting personal care homes and emergency shelters are included.¹⁴²⁷

Finally, the plan contains no requirement that people living in institutions who could handle and benefit from community living and do not oppose community placement be identified, let alone that they move to the community at a reasonable pace. The Institution to Community Focus Group had recommended, during the planning process, that evaluation teams be established for each target population (developmental disabilities, mental illness, and physical disabilities) and that these teams evaluate the needs of consumers on an annual basis. However, the focus group could not reach consensus on who should be responsible for implementing this recommendation,¹⁴²⁸ and it does not appear in the final plan. A participant in the planning process reported that state officials' response to the recommendation was that the state agencies already had evaluation teams in place and no more was necessary than to let them continue to do their work. Advocates responded that these teams were not recommending people for community placement, that the maximum number of slots in the Home And Community-Based waivers were not being used, and that an independent entity was needed to assess institutional residents for community placement.¹⁴²⁹

Instead of the focus group's recommendation, the plan sets a goal, not of identifying all institutionalized persons who could benefit from community living, but of "advising" nursing facility residents of the available community-based alternatives and allowing them the "option" to choose a more integrated setting. The strategies set forth in the plan for carrying out this goal are limited to information dissemination about existing community services; identification of nursing facility residents "who are able to perform many of the activities of daily living but require either supervision or prompting"; and responding to requests to leave nursing facilities by "facilitating access" to available community services.¹⁴³⁰ These strategies virtually ensure that the only nursing facility residents who will leave nursing facilities under the plan are those who affirmatively ask to leave, can be supported in existing community services, and do not have significant disabilities.

The needs of persons with mental illness are virtually unaddressed in the plan: There is simply no mention in the plan of transition to the community for people with mental illness. The advocates' suggestion that state commitment laws be changed was not adopted.¹⁴³¹

The recommendations of the Transportation Focus Group were weakened in the final plan. The focus group had called for the governor to create transportation partnerships between state agencies that would lead to a working plan to create fixed route and flexible scheduling transportation opportunities for people with disabilities in their home communities.¹⁴³² The final version provided only that the Developmental Disabilities Council would continue to fund pilot projects and a feasibility study for a plan that might lead to additional funding requests between 2006 and 2011.¹⁴³³

On the other hand, the strategies for increasing the supply of accessible, affordable housing, while neither strong nor ambitious, are superior to their counterparts in most other state Olmstead plans, probably because housing agencies were at the table during the planning process. Those strategies include training case managers in housing facilitation; expanding the menu of services under home and community based waivers to include home modifications and home repair; expanding home modification and accessibility services under the independent living program; encouraging the Mississippi Development Authority to allocate 5 to 10 percent of all state housing funds granted to cities and counties to be used for people with disabilities; bringing housing agencies (including Rural Development and Regional Housing Authorities) together to educate them on the funding needs of people with disabilities; earmarking 10 percent of Section 8 vouchers for people with disabilities; and increasing funding to cover down payments and closing costs from the Mississippi Development Authority.¹⁴³⁴ If successful, these strategies could provide useful models for expanding housing for people with disabilities.

Mississippi stakeholders report that even the portions of Mississippi Access to Care that should not require additional funding, such as the single point of entry provision, are not being implemented and attribute this to "turf protection"-the desire of each agency to control access to the services it provides. Nearly all the advocates we interviewed volunteered that "turf issues" are a major barrier to plan implementation.

Mississippi received a Real Choice Systems Change grant of $1,385,000 in 2002 to demonstrate a model for applying a Person-Centered Planning process in three mental health regions. The project will introduce Person-Centered Planning to the existing services of Mental Illness Management and Intensive Case Management.¹⁴³⁵

In May 2002, the Mississippi Coalition for Citizens with Disabilities filed a lawsuit, Billy A. and Mississippi Coalition for Citizens with Disabilities v. Lewis-Payton, in federal district court in Jackson on behalf of persons with disabilities segregated in nursing homes who could be living in the community if they had adequate support. The individual plaintiffs are relatively young persons who are living in nursing facilities. The defendants are the Division of Medicaid and the state Departments of Human Services and Rehabilitation Services, which oversee the five Home And Community-Based waivers. The complaint alleges that of about 19,000 nursing home residents in Mississippi in the last year, about 2,000 are under age 65. The case is scheduled to go to trial in November 2003.¹⁴³⁶

That this lawsuit was necessary is evidence that even an Olmstead plan that is widely considered "the best of the best"¹⁴³⁷ will not succeed in the absence of resolve on the part of the state to identify people who are unnecessarily institutionalized, redirect funding from institutions, and ensure that waiting lists move at a reasonable pace.

In 2000, Florida served roughly half of its approximately 12,600 residential clients with developmental disabilities in community settings of six persons or less.¹⁴³⁸ The remainder are divided between small institutions of 7 to 15 people (23 percent) and large facilities (27 percent). Of the 3,378 people in institutions, 1,534 people were housed in state facilities.¹⁴³⁹ This number represents a significant decrease from 4,414 in 1977, but only a slight decrease from 1,605 in 1996.¹⁴⁴⁰ The number of people in state institutions was reported to be below 1,500 as of June 30, 2002.¹⁴⁴¹ Florida maintained four state institutions for people with developmental disabilities but is closing one facility, Landmark, in the Miami area.¹⁴⁴² When seen in the context of its total population, the nation's fourth-largest, Florida's rate of placement is below the U.S. average and below every other Southern state. (For example, Louisiana, a far smaller state, reported housing 1,717 people in state facilities.)¹⁴⁴³ Still, Florida is one of only 17 states that continue to house more than 1,000 people in state DD institutions.¹⁴⁴⁴

In total, Florida served 3,378 people with developmental disabilities in settings of 16 or more people, or 27 percent of the total people with developmental disabilities in residential settings.¹⁴⁴⁵ This included 191 people in nursing homes, one of the lowest rates of placement in the nation¹⁴⁴⁶. Florida reported a total of 3,680 ICF/MR beds in 1998 (including, presumably, those in state facilities).¹⁴⁴⁷ While ICF beds increased between 1996 and 1998, the ratio of ICF beds relative to the general population was slightly over half the national average.¹⁴⁴⁸ Florida spent roughly $29 million more on its ICF/MR program ($281 million) than on MR community services ($252 million).¹⁴⁴⁹ When measured by the amount spent on each participant, however, the bias toward institutional care is much starker: Florida spent $82,302 for each ICF resident, while spending only $14,417 for each person served in the community.¹⁴⁵⁰ Florida's per capita spending on MR waiver services is 42nd in the nation at $8.88. (By contrast, Rhode Island, the highest-spending state, spends $78.83 per capita, and West Virginia spends $34.87.)¹⁴⁵¹

Florida has seven state facilities for people with psychiatric disabilities, although it anticipated closure of the G. Pierce Woods Hospital.¹⁴⁵² The total capacity of the hospitals is 2,821 beds and 4,300 people are housed annually.¹⁴⁵³ Each bed costs an average of $100,000 per year, with a total cost of $275 million to maintain the state hospitals.¹⁴⁵⁴

Florida has the nation's highest proportion of residents over 65 years old,¹⁴⁵⁵ which may cause a higher incidence of people with physical disabilities. Indeed, Florida's nursing home bed count grew contrary to a slight national reduction. From 1988 to 1998, Florida gained 20,000 nursing home beds.¹⁴⁵⁶ In total, Florida reported 81,172 Medicaid-funded beds in 698 nursing homes, with an average occupancy rate of over 87 percent.¹⁴⁵⁷ Florida's community services, by contrast, have not developed as extensively. Florida reported serving 12,266 people on its Aged/Disabled Home and Community Based Services (HCBS) waiver program for in-home, personal care, and home health services.¹⁴⁵⁸ Florida reported 6,500 participants in its HCBS personal care program in 1998-99, one of the nation's lowest participation rates.¹⁴⁵⁹ Likewise, Florida's spending on Medicaid personal care services in 1997-98 was approximately $15.6 million. The rate per participant was $2,401, more than $4,400 below the national average and lower than all but ten other states.¹⁴⁶⁰ Likewise, per capita spending was only $1.09-far below the national average of $18.11.¹⁴⁶¹

Florida's seven Medicaid HCBS waiver programs totaled $551,346,853 in 2001.¹⁴⁶² Total Medicaid waiver spending increased significantly in the late 1990s, rising from just over $151 million in 1995.¹⁴⁶³ The largest growth came in 2000-01, when total waiver spending grew by 43.5 percent.¹⁴⁶⁴ Much of this growth was in the state's MR/DD waiver, which grew from approximately $271 million to over $419 million, a 54 percent increase.¹⁴⁶⁵ MR/DD spending now accounts for about four-fifths of the state's HCBS spending. Some of this growth is likely attributable to the state's efforts to comply with a court settlement in Prado-Steiman v. Bush,¹⁴⁶⁶ which challenged the state's waiting list for developmental services. In 2000, Florida served 21,126 people on its MR/DD waiver, nearly 10,000 more than in 1997-representing an 85 percent increase.¹⁴⁶⁷ Florida's aged waiver also saw a large increase of 43.8 percent in 2000-01, although the total dollar increase of $6.4 million-from $14.5 million to $20.9 million-pales in comparison to the $148 million MR increase.¹⁴⁶⁸

Florida is conducting a long-term managed care demonstration project that eliminates financial disincentives to nursing facility utilization. In this project, the state pays participating HMOs a capitated rate for all Medicaid services, including home- and community-based services and nursing facility services. The HMO is responsible for unlimited nursing facility payments for Medicaid beneficiaries enrolled in the program for as long as the person remains enrolled. As a result, the HMO has a strong incentive to reduce costs by reducing nursing facility usage. The HMOs employ case managers to coordinate acute and long-term care services and offer certain benefits, including partial room and board payments in assisted living facilities, in addition to the services by Medicaid and the state's Home And Community-Based waivers. The program appears to have had success in diverting a significantly impaired population from nursing facilities.¹⁴⁶⁹

Another innovative service is Florida's program of consumer-directed care, which serves about 2,000 frail elderly adults and children with disabilities. Recently, Florida expanded its consumer-directed services by becoming the second state to obtain an Independence Plus waiver to provide personal care, respite, home and vehicle modifications and other services to an additional children with disabilities.¹⁴⁷⁰

Florida's federal-state Medicaid program accounted for 33 percent of its total budget in 2000.¹⁴⁷¹ Florida's utilization of federal matching funds for Medicaid was fairly high: Out of a total budget of approximately $726 million, only about $67 million was unmatched.¹⁴⁷²

Florida has not developed a formal Olmstead plan.¹⁴⁷³ Governor Jeb Bush has, however, made the expansion and improvement of community developmental disability services a priority. To this end, he has pledged to reform the state's MR/DD waiver program with the goal of addressing the state's extensive waiting list, which is estimated to be between 28,000 and 29,000 people.¹⁴⁷⁴ Of these, 6,000 are estimated to have joined the waiting list after 1999 and are thus not entitled to services secured in the Prado-Steiman settlement. According to the executive director of Florida's Protection and Advocacy agency, the Bush administration increased by 60 percent the number of people served in community settings from 1998 to 2000.¹⁴⁷⁵ Governor Bush has also sought an additional $162.6 million for DD services for the 2003-04 budget, of which $90 million would come from state revenues and the remaining $72 million in matching federal funds.¹⁴⁷⁶

Despite these efforts, in January 2002 the P&A agency and 21 other DD advocacy agencies wrote to Governor Bush concerning "the deteriorating condition of our State's developmental disabilities program."¹⁴⁷⁷ While recognizing "the tremendous progress that has been made on your watch," the advocates reported "a severe funding crisis in meeting the needs of citizens with developmental disabilities."¹⁴⁷⁸ Specifically, the advocates noted reports that Florida's DD waiting list had grown to nearly 6,000 people, but the state "has now turned to helping only a 'crisis quota' of 10 individuals per month from the waiting list."¹⁴⁷⁹

Under Governor Bush, Florida has committed to reviewing and overhauling the state's developmental disability waiver programs, with the goal of reducing the state's waiting list. A state-organized group of officials and advocates called the Real Choices Coalition undertook a review of the waiver programs. Their coalition's goal was not to formulate an Olmstead plan. Rather, the purpose was to examine barriers within the waiver programs and other policy decisions preventing people with disabilities from moving from institutional into integrated settings.¹⁴⁸⁰

In July 2002, the coalition and Health Management Associates published the "Real Choices Partnership Work Plan," which is a plan for reviewing and analyzing "the feasibility of streamlining the ... waivers."¹⁴⁸¹ Although it is not styled as an Olmstead plan, it calls for analysis of issues having a direct bearing on implementation of the Supreme Court's decision. For example, the plan seeks to identify populations currently unserved by Medicaid waivers (such as persons with psychiatric disabilities) and what measures would be necessary to establish waivers for these populations. The plan also calls for a review of access to the waiver, eligibility standards, income guidelines, services provided under different waiver programs, limitations on services, amount of providers, quality of providers, reimbursement of providers, and funding.¹⁴⁸²

The plan also calls for a review of Florida's waiting list population, including how long people stay on the list, the impact the list has on allocation of resources, and "the current status of assessment of individuals living in institutions that desire to live in the community".¹⁴⁸³ Finally, the plan calls for analysis of whether other needed supports, such as housing, can be funded through Medicaid.

The July 2002 plan does not specify when a report will be completed, whether it will contain any policy recommendations, or whether Florida's state agencies will be obligated to follow these recommendations. In this sense, the workplan differs from the comprehensive Olmstead plans of other states (and, it should be noted, Florida has not held out the workplan as such). The issues the plan intends to address, however, are central to the process of determining compliance with the ADA's integration mandate. If done well, the report could provide a vital overview of the state of community services and their ability to serve people waiting for such services (whether in the institutions or at private homes).

The plan also appears to contemplate analyzing how Florida may maximize available federal dollars to fund and improve existing services as well as expansion of community services. This is a necessary and important inquiry, but it should be performed with the goal of allowing people who are institutionalized the opportunity to live in the community. This may require transitioning Medicaid and state funds from institutional to community-based settings as well as expanding current waiver funding.

An official report on Florida's mental health system, however, gives an indication of the difficulties the Real Choice Coalition will face in collecting reliable data on the unmet need for services. The report found that "[t]he magnitude of unmet need for MHSA [Mental Health and Substance Abuse] treatment cannot be ascertained."¹⁴⁸⁴ While not everyone falling within this "unmet need" category will be at risk of unnecessary hospitalization, some surely are. For example, the MHSA report found that 79 percent or more of the over 500,000 adults with severe mental illness receive no services.¹⁴⁸⁵ Similarly, the report found that "insufficient data were (are) available to estimate the intensity and effectiveness of MHSA services and prevention efforts being provided for children and adolescents in Florida's public school system."¹⁴⁸⁶

New York is one of the states that spawned the deinstitutionalization movement. The exposure in the early 1970s of the Willowbrook institution in Staten Island brought national attention to the plight of thousands of persons with mental retardation who languished in state facilities and led to one of the earliest community-integration class action lawsuits, New York State Ass'n for Retarded Children v. Carey. In 1977, New York housed more people in state mental retardation facilities than any other: 18,799, over 8,000 more people than Texas, its nearest rival.¹⁴⁸⁷

New York's public institution population has declined dramatically since then. In 2000, 2,009 people lived in state mental retardation institutions.¹⁴⁸⁸ In terms of raw numbers, New York's institutional population ranked fifth in the nation, behind Texas, California, New Jersey, and Illinois. In terms of placements per 100,000 people, however, New York institutionalizes 11 people with developmental disabilities, below the national average of 17.¹⁴⁸⁹

Unfortunately, New York's significant downsizing of state facilities has not always translated into community-based services. Many New Yorkers with developmental disabilities live in private institutions. New York housed 3,497 people with developmental disabilities in nursing homes in 2000, a 14 percent increase from 1996. New York was one of only 13 states that saw an increase in its DD population in nursing homes, and housed more people than any other state. In addition, 1,923 people lived in private ICFs/MR of 16 persons or more, and 6,047 lived in ICFs/MR of between 7 and 15 people.¹⁴⁹⁰ The number of people in 7-to 15-person facilities grew by nearly 5,000 during the 1990s, with 18,168 people living in such facilities. All but 76 live in private facilities. Only 39 percent of New York's population of persons with developmental disabilities live in homes with six or fewer persons.¹⁴⁹¹

New York reported 118,885 nursing home beds in 1998, with an occupancy rate of 95 percent.¹⁴⁹² The number of nursing facilities has grown steadily from 617 in 1989 to 673 in 1998.¹⁴⁹³ Each nursing home had an average of 176.6 beds (the national average was 103.5 beds).¹⁴⁹⁴ State Medicaid expenditures on nursing homes increased from approximately $5.2 billion in 1996 to almost $6.4 billion in 2001.

New York maintained 6,236 beds in its 28 state psychiatric institutions at the end of 2001. The average daily census in the institutions in 2001 was greater than the number of beds at the end, suggesting that the state actually closed beds during that year. Of the total number of residents, 1299 had been institutionalized for more than a year.¹⁴⁹⁵

Personal care services also increased in this period, but not nearly as much-from almost $1.6 billion to $1.86 billion in 2001.¹⁴⁹⁶ On the other hand, New York's community-based personal care program dwarfed those of other states, both in the number of participants-87,496 in 1997-98-and in cost. In terms of participants, only California served more people, with 139,077 participants.¹⁴⁹⁷ But New York spent far more on them. The $1.65 billion New York expended in 1997-98 constituted over one-quarter of the nation's total spending on personal care and exceeded the next largest state program, California, which was only $332 million.¹⁴⁹⁸ Per participant, New York spent $18,916, with only Massachusetts, North Dakota, and New Hampshire spending more; California spent $2,389 per participant. New York's per capita expenditures were the highest in the nation, at $91.21; California, on the other hand, spent only $10.33.¹⁴⁹⁹ Nevertheless, even these high numbers are dwarfed by New York's spending on nursing home care.

New York's Medicaid Home and Community-Based Services Medicaid waiver programs are by far the largest in the nation. For people with developmental disabilities, New York expended $1.7 billion for HCBS waiver services, or 17.7 percent of the nation's total.¹⁵⁰⁰ No other state came close in total spending: only four other states (California, Massachusetts, Minnesota, and Pennsylvania) exceeded $400 million in expenditures.¹⁵⁰¹ In 2001, New York reported spending more than $2 billion on MR/DD waiver programs.¹⁵⁰²

New York's heavy Medicaid spending on its DD population was the result of a concerted effort to certify and increase the number of people in its waiver programs. HCBS waiver participation increased from 12,039 in 1993 to 36,100 in 2000, a 200 percent increase.¹⁵⁰³ New York ranks ninth among the states in per capita participation (DD waiver participants per 100,000 people), although the states exceeding New York in this category had much smaller populations (the leader, for example, was North Dakota). Compared to large states such as Texas (which ranked 48th), California (which ranked 33rd and whose waiver actually declined from 1997 to 2000), Illinois (which ranked 43rd), and Michigan (which ranked 33rd), New York has succeeded in enrolling people with developmental disabilities on its mental retardation HCBS waiver programs.

New York also leads the nation in drawing down the most Medicaid dollars as a percentage of its total community spending. One hundred percent of New York's spending on DD services, both under the HCBS waiver and the ICFs/MR program, is matched by federal Medicaid dollars.¹⁵⁰⁴ This is despite the fact that New York's HCBS waiver is only nine years old, one of the newest in the nation.

All of this makes the fact that only 39 percent of people with developmental disabilities live in homes of six or fewer quite baffling. Despite the amount of resources obtained for and dedicated to community spending, New York has become the nation's leader in terms of placing people with developmental disabilities in nursing homes. It cannot even be said that New York has significantly decreased the number of people living with their families and waiting for community-based, long-term services. In 2000, an estimated 43,858 people with developmental disabilities were living in households with caregivers aged 60 or older. Only California had more; Texas, with a larger total population, had 2,000 fewer people with developmental disabilities in such households.¹⁵⁰⁵

The same dichotomy exists for people with physical disabilities: Despite having one of the nation's largest community-based personal care programs, New York continues to fill its 118,000 nursing home beds nearly to capacity. The director of the reintegration program for the Rochester Center for Independent Living reported that for many of her clients, the only option available was nursing home care.¹⁵⁰⁶

In other states, such as New Hampshire, increases in Medicaid HCBS dollars have coincided with increased community long-term care and a decrease in institutional and nursing home populations. New York has made progress as well, but not nearly to the same extent. With the level of resources New York has put into the community, one would not expect to see a minority of people with developmental disabilities in small, community-based homes. One explanation may be that New York's HCBS dollars have been channeled to a significant number of people living in homes of between 7 and 15 people. These homes-both ICF and non-ICF-house 42 percent of New York's out-of-home DD population. To the extent that New York's flush of Medicaid dollars have gone toward these types of facilities, they defeat the promise of independent, individualized community care the HCBS program offers.

For people with physical disabilities, it must be remembered that however generous New York's personal care program appears when compared to other states, it pales in comparison to New York's spending on nursing homes. New York nursing homes enjoy the same three-to-one funding advantage to community services as those across the nation. This may have led to a "build it, and they will come" phenomenon, exemplified in part by New York's high occupancy rate. Another reason, reported by disability advocates, is the high cost of housing in New York, particularly in and around New York City. While New York has been adept at drawing down funds for attendant care services and traditional community service models, disability advocates report that it has not fully addressed the scarcity of accessible, affordable housing for people who can live independently. Again, an Olmstead plan could help guide the state on how to overcome this problem.

New York has not yet developed an Olmstead plan, although the state mental health agency reportedly receive a grant of $20,000 in targeted funds for activities related to Olmstead implementation.¹⁵⁰⁷ Both state officials and advocates have reported that the state perceives itself as addressing the problem of unnecessary institutionalization such that a plan is not necessary. But as stated above, New York presents significant questions as to how such extensive increases in spending fail to yield more positive results for community integration and in particular innovative, individualized programs. An Olmstead plan could examine these issues and address how New York's Medicaid dollars could better facilitate integration and promote deinstitutionalization.

In 2002, pressure from ADAPT and its allies finally persuaded the legislature and the governor to enact legislation to require an Olmstead plan. On February 21, 2001, Assemblyman Scott Stringer (D-New York City) introduced Assembly Bill 5298, which would have directed the state Department of Health to establish a Most Integrated Setting Program. The bill required the Department of Health to:

1. develop a "comprehensive statewide program that includes, but is not limited to: medical, housing, social, vocational, educational, transportation, personal assistance, community re-entry services, assistive technology, and other essential services,"
2. identify nursing home residents "who could live in a most integrated setting,"
3. track the amount and cost of services provided to institutional residents, and
4. "[d]evelop community-based, non-institutional services for eligible persons with disabilities ..."

The bill defined "most integrated setting" as "the provision of services to people with disabilities in a non-institutional, community-based setting, including but not limited to an independent apartment, supportive housing, living in the household of another, or transitional congregate housing." The bill also called for a "most integrated setting coordinating council," which would have been comprised in part of people with disabilities, and which would have recommended "long range objectives, goals and priorities" to the Department of Health.

The bill's justification, according to its accompanying memorandum, was that "[e]ven though the ADA was passed more than 10 years ago, there are still thousands of New Yorkers with disabilities in institutions, nursing homes, sheltered workshops, and segregated school programs that are much more restrictive than is necessary to meet their needs."

The bill was not enacted in 2001, however, and the concept of the Most Integrated Setting legislation languished until February, 2002, when hundreds of advocates from ADAPT and the Coalition to Implement Olmstead in New York (CTIONY) demonstrated at the New York Department of Health to protest the state's failure to implement Olmstead. After eight activists were arrested for sitting in at the governor's office, Assemblyman Kevin Cahill reintroduced the bill. It was passed unanimously by the Assembly on June 12, 2002. In the state Senate, ADAPT again had to demonstrate and orchestrate a sit-in to bring the bill out of committee and to a vote. The bill was passed by the Senate on the last day of its session in June 2002.¹⁵⁰⁸

After the bill was sent to Governor Pataki on August 22, 2002, about 50 advocates occupied the Governor's War Room to signal the bill's importance to the disability community. The bill sat on the governor's desk until mid-September, when ADAPT and CTIONY learned that the governor might veto it. On September 16, groups of activists came to Albany from all over the state and again occupied the Governor's War Room until the negotiations between the governor and legislative leaders concluded with an agreement that the Governor would sign the bill with only a few technical changes. The Most Integrated Setting bill was signed into law on September 17, 2002.¹⁵⁰⁹

However, the act has not been implemented. The Most Integrated Setting Coordinating Council was to be appointed within 90 days after the law was enacted, but was not. Accordingly, on January 15, 2003, ADAPT again demonstrated in Albany, asking that the council be appointed, that Governor Pataki make Olmstead implementation a priority, the a new Home And Community-Based waiver be created for persons with disabilities and elders who are not eligible for existing waivers, and that the Department of Health resume its quarterly meetings with advocates.¹⁵¹⁰ The governor responded with a bill that would amend the Most Integrated Setting legislation by weakening the role of the coordinating council, the data collection requirements, and remove any implementation mandate from the council's recommendations.¹⁵¹¹ At the same time, the state's 2003 budget shortfall of $2 billion has created the threat of cuts in the governor's 2004 Medicaid budget.¹⁵¹² The governor has already vetoed a Mental Health Community Reinvestment Act that would have required that savings achieved through the closure of state psychiatric institutions and inpatient beds be reinvested in community-based mental health services.¹⁵¹³

As advocates continue to press the state to implement Olmstead, New York, which has commendably utilized federal matchingdollars to produce, in terms of dollars spent, one of the most generous disability services programs in the nation, should examine why this utilization has not led to greater freedoms for people with disabilities who are institutionalized. Specifically, New York must examine why money has channeled into smaller, private institutions and why so much money continues to go to nursing homes despite the existence of a large personal care program.

11. NEW HAMPSHIRE

A small, largely rural state with "a deeply ingrained tradition of local control,"¹⁵¹⁴ whose population in 2000 was about 1.2 million,¹⁵¹⁵ New Hampshire has created a community-based developmental disabilities service system that is nationally renowned as a model of community integration and self-determination. In 1991, the state closed its only public developmental disabilities institution, Laconia State School, and became the first state in the nation with no congregate public facility for people with developmental disabilities. Laconia was at the center of a lawsuit, Garrity v. Gallen,¹⁵¹⁶ one of the earliest cases brought by residents of a congregate institution seeking deinstitutionalization. In Garrity, the district court held that failure to provide opportunities for community placement to institutional residents with significant disabilities was discrimination based on severity of disability and a violation of Section 504 of the Rehabilitation Act.¹⁵¹⁷ Although the court did not order closure nor find that institutionalization was inappropriate for all persons with disabilities, the effect of the court orders was to enable the state to create community services for all persons with developmental disabilities. The efforts of the advocates who brought the lawsuit and the commitment of state officials to community integration jointly facilitated Laconia's successful closure and its replacement by a complete system of community support managed by twelve local Area Agencies.

New Hampshire's community developmental disabilities service system did not remain static after Laconia closed, but continued to evolve in the direction of greater and greater community integration. Most Laconia residents left the institution for large group homes and consequently, by 1991, when the institution closed, 1,152 persons with developmental disabilities lived in residences for 7 to 15 persons. By 2000, only 8 persons remained in such settings; the rest had moved to small homes for 6 persons or fewer.¹⁵¹⁸ The state's quality assurance data for 2002 show that 94 percent of all persons with developmental disabilities living in certified housing shared their residence with three other persons or fewer; the number of individuals sharing a residence is an explicit quality indicator tracked by the service system, and the state reports that the percentage of persons living with three or fewer persons has continued to increase in the last several years.¹⁵¹⁹ The state has virtually ended its reliance on private ICF/MRs, with only 24 individuals remaining in such settings in 2000.¹⁵²⁰ In 2000, 64 persons with developmental disabilities lived in general nursing facilities, down from a high of 107 nursing facility residents in 1996.¹⁵²¹

New Hampshire has made excellent use of federal funds to support its developmental disabilities service system. After Laconia closed, the state increasingly matched its expenditures of state and local funds with federal funds, and by 2000, unmatched state and local funds represented only 5 percent of total MR/DD spending.¹⁵²² Despite a dramatic increase in the number of home and community based waiver recipients from 822 in 1990 to 2,638 in 2000, the state's own fiscal effort remained quite stable during that period, and waiver spending per recipient declined from about $53,000 per recipient in 1991 to $37,000 in 2000.¹⁵²³

Accompanying and eventually driving these developments in community integration and financing of services was the initiative that has become synonymous with community services in New Hampshire: self-determination. Around the time of Laconia's closure, advocates and visionary program administrators were beginning to ask the question, "What would a system of supports look like if people with disabilities and their circles of friends were truly in charge of their own services?" In 1993, the Robert Wood Johnson Foundation awarded a three year grant to Monadnock Developmental Services, one of New Hampshire's twelve Area Agencies, to help answer this question.¹⁵²⁴ The Monadnock initiative was fully supported at the state and local level by visionary administrators and leaders.¹⁵²⁵

The self-determination model demonstrated in Monadnock, and eventually adopted throughout the state of New Hampshire and in many other areas around the country, was based on four principles: The freedom of the person with disabilities to plan a life with necessary support rather than purchase a program; the authority of the person to control a certain sum of money to purchase the needed support; the arranging of support to enable the person to live a rich and meaningful life in the community; and the responsibility of the person with disabilities to accept a valued role in the community.¹⁵²⁶ Operationally, self-determination was implemented through the creation of individual budgets for services, the utilization of "fiscal intermediaries" to provide technical and fiscal support to people with disabilities and their circles of support, for example, handling federal and state employment requirements.¹⁵²⁷ A rigorous evaluation of the Monadnock demonstration from 1994 to 1996 showed that the people supported in the model achieved large gains in self-determination, personal satisfaction, quality of life, number of participants in circles of friends, vocational skills, amelioration of challenging behavior, increased hours of day programs, physical quality of the home and many other areas of quality. All this was achieved at a cost that was 12-15 percent lower than the cost of traditional services.¹⁵²⁸

After the successful demonstration in Monadnock, New Hampshire began, in 1995, to apply the self-determination model and transform developmental disability services on a statewide basis.¹⁵²⁹ Because of the high level of local control in New Hampshire's service system, each of the twelve Area Agencies has implemented self-determination in a slightly different fashion. In some cases, the Area Agency serves as the fiscal intermediary for consumers and their circles of support. In others, the Area Agency provides support with Medical Assistance billing and IRS forms.¹⁵³⁰ Independent support coordinators or service brokers from the Area Agencies may help form and facilitate the individual's circle of support. The transformation of the role of the support coordinator from a traditional case manager who arranges and processes payment for formal services to a facilitator who organizes community support for a person managing his own life is one of the most far-reaching systemic changes brought about by the conversion to self-determination.

Based on the researchers' discussions with members of People First of New Hampshire and visits to several New Hampshire towns and regions in July, 2002, it is clear that under the self-determination model, people with developmental disabilities in New Hampshire experience a remarkable degree of community inclusion compared to their peers in other parts of the country. Living in one's own home or with a companion is the norm and not the exception. Although according to the state's quality assurance data, only 48 percent of those who wish to work are employed and only 32 percent are working more than 20 hours a week, nevertheless 74 percent of those who are employed earn more than the minimum wage.¹⁵³¹ While the pattern of unemployment, underemployment and low pay for people with disabilities exists in New Hampshire as it does across the nation, employment opportunities for people with developmental disabilities seem to be more widely available in New Hampshire than in many states. Advocates reported that they knew of only one remaining sheltered workshop in the state.¹⁵³²

New Hampshire has also been a leader in home ownership for people with disabilities through the Home of Your Own Project developed by the Institute on Disability at the University of New Hampshire and the state housing authority with support from the Administration on Developmental Disabilities beginning in 1991. The project enables people with significant physical and cognitive disabilities to live in their own homes rather than in group homes. Now that federal funding has ended, the project is managed by a Community Loan Fund in cooperation with the New Hampshire Housing Authority and the Developmental Disabilities Council. Staff of the Housing Authority provide ongoing support to homeowners, for example, assuring that they keep a maintenance account for repairs.¹⁵³³

The success of the self-determination model in the developmental disabilities service system has had a slow but positive impact on other service systems in New Hampshire. Community mental health services are relatively well-developed, but at the end of 2001, the state hospital housed about 200 people, 30 of them children, and 50 persons had been there for more than a year.¹⁵³⁴ State law allows involuntary outpatient commitment and conditional release, although analysts report that these mechanisms are used "rarely" compared to the practice in other states.¹⁵³⁵ New Hampshire has been a leader in the development of supported employment programs for people with mental illness, particularly the approach called Individual Placement and Support (IPS), which is characterized by minimal assessments, rapid job searches, matching people with jobs of their choice and providing ongoing support, such as transportation, or arranging for a substitute employee during periods of illness.¹⁵³⁶ The model was developed by researchers at the Dartmouth-New Hampshire Psychiatric Research Center in the early 1990s, and studies have shown that New Hampshire's IPS programs are succeessful in placing people with serious mental illness in real jobs at a far greater rate than traditional employment programs.¹⁵³⁷

In 2001, 7,126 persons lived in nursing facilities in New Hampshire, and the state ranked thirteenth in the nation in the percent of nursing facility residents measured as a percentage of all persons aged 65 or older.¹⁵³⁸ In New Hampshire, the nursing facility population declined by 2.6 percent from 1996 to 2001, compared to a decline of only 0.7 percent for the United States as a whole during this period.¹⁵³⁹ Compared to the nation as a whole, New Hampshire's nursing facilities rank relatively high on measures of quality (use of restraints and percentage of residents with restraints and pressure sores are lower than average).¹⁵⁴⁰ Between 1996 and 2001, Medicaid spending on nursing facilities in New Hampshire grew by a total of only 2 percent.¹⁵⁴¹

New Hampshire was an early leader in the use of the home and community-based waiver for elders, and on measures of the availability of community services it still ranks in the top 20 percent to the top 50 percent of the states.¹⁵⁴² Of overall long-term care Medicaid expenditures in 2001, 59 percent were devoted to institutional services and 41 percent to home and community based services.¹⁵⁴³

By the end of 2002, New Hampshire had four home and community-based services waivers for persons with developmental disability, persons with acquired brain disorder, the elderly and chronically ill and children with developmental disabilities.¹⁵⁴⁴ In December 2002, New Hampshire became the first state to receive an Independence Plus waiver under HHS' new initiative to promote consumer-directed services.¹⁵⁴⁵ The new waiver will provide enhanced in-home support services, including personal care, respite, and home and vehicle modifications, for children with developmental disabilities. Support brokers and fiscal intermediaries will assist families to direct their children's services.¹⁵⁴⁶

Compared to the state's services for persons with developmental disabilities, New Hampshire's service systems for elders and people with disabilities are still relatively traditional and dominated by nursing facility services. Changes are occurring, however, that promise to move these systems into closer alignment with the values of choice and self-determination that characterize the state's developmental disability services.

In the late 1990s, policy-makers and other stakeholders began to envision a long-term care system based on "the central tenets that elderly and disabled people should have the right to receive care and services in their communities, to have a choice in the services they receive, and to direct their own care and services."¹⁵⁴⁷ In 1998, the state received permission from the federal government to amend its waiver for Elderly and Chronically Ill (ECI) persons to expand waiver eligibility to those who are medically needy, increase the number of waiver slots, and offer a variety of new services including six types of residential support.¹⁵⁴⁸

The following year, the state applied for a nursing home transition initiative grant to develop a transition system and assist up to 20 persons to move from nursing facilities back to their home communities.¹⁵⁴⁹ The central component of the model was a "consumer-directed independent service coordinator" based in a private agency who would contact individual nursing facility residents, work with them to develop individualized care plans, and advocate for the provision of the services needed to fulfill those plans.¹⁵⁵⁰ The Independent Service Coordinator (ISC) model stopped short of self-determination, however, since it did not provide for individual budgets controlled by the consumer.¹⁵⁵¹ In addition to the new services offered under the ECI waiver, those services would include special access to housing resources. The state Housing Finance Authority agreed to use its emergency housing program to make rental assistance immediately available to people transitioning from nursing facilities to the community, without the often prolonged wait for a Section 8 voucher.¹⁵⁵² The housing authority also amended its Section 8 plan to create a high priority for Section 8 housing vouchers for people coming out of nursing facilities. The combination of emergency rental assistance and the new Section 8 priority helped create more access to affordable housing.¹⁵⁵³

The Nursing Facility Transition project included a pilot of a consumer-directed personal care attendant program, with Granite State Independent Living Center serving as a fiscal intermediary.¹⁵⁵⁴ Other innovative "barrier removal" components of the new model were transitional and bridge funding (supported by grant funds) to allow participants to "test and refine" their community services prior to moving, and the "banking" of unspent resources to use later on when the person's service needs increased.¹⁵⁵⁵

New Hampshire does not have an Olmstead plan or a formal Olmstead planning process. The state's response to Olmstead is best characterized as a continuation of its pre-existing systems change activities, particularly in nursing facility transition, and a stance of "[L]et's not spend time planning, let's just implement."¹⁵⁵⁶ The state has also been strongly pushed by advocates to reduce community waiting lists and has developed a plan, as yet unimplemented, to do so. According to the Director of the Department of Health and Human Services, the state compiled its various planning documents related to the development of community services for elders, children, and people with disabilities into one comprehensive document, but does not call this an "Olmstead plan."¹⁵⁵⁷ The Director added that stakeholders have agreed that the state does not need another "plan."¹⁵⁵⁸

New Hampshire responded assertively to the availability of Systems Change grants and by 2002 had received a total of almost $4 million under the various initiatives - an impressive amount for a state of its small size.¹⁵⁵⁹ The state obtained three grants that continued the work begun in the 1999 nursing facility transition initiative. The largest grant, for $2.3 million, was designed to identify and fill gaps in the current long-term care system, implement pilot projects in model communities and regions and develop a policy center to review all laws and regulations.¹⁵⁶⁰ A second project sought to create a cross-disability model of consumer-directed personal care.¹⁵⁶¹ A third focused on the transition and housing needs of nursing facility residents with mental illness and included partnerships with the New Hampshire Housing Finance Authority and a recovery-based peer support program.¹⁵⁶²

By mid-2002, interim findings from the Nursing Home Transition Project showed considerable success and, at the same time, revealed many of the barriers in the system. The project helped 28 persons to move out of nursing homes, and 24 of them successfully remained in the community. The average cost in transitional and bridge funding was $2,903 per person, which was recouped after 8.4 weeks in the community. The average cost saving per person was $8,917. A remarkable finding was that although the project was originally designed to target nursing facility residents with less significant disabilities or "acuity levels" of 7 to 10, in fact most of the people who moved had more significant disabilities, that is, acuity levels of six or lower.¹⁵⁶³

The Project encountered many barriers to transitioning back to the community. First, the expanded services under the amended ECI waiver simply were not implemented. According to one of the subcontractors on the Systems Change grants, this was due less to lack of money than to lack of leadership and a case of "too much change at any one time."¹⁵⁶⁴

Second, the process by which nursing facility residents and people who may be referred for nursing facility placement are informed about community alternatives is not uniform throughout the state. In some counties, this is done by nursing facility employees; in other counties, no one does it.¹⁵⁶⁵

Third, the community-based service system is unstable. Home health services are not widely available to Medical Assistance beneficiaries, despite rules forbidding such discrimination. The number of providers generally is insufficient, especially for people with mental illness. New Hampshire does not have a network of Area Agencies on Aging.¹⁵⁶⁶

Families and guardians sometimes posed barriers to movement; generally, if the family supported transition, it happened; if they did not, the person did not move. People who did not have families were harder to place in the community, since long-term care systems for elders tend to rely heavily on natural support. Assisted living services and other supported residential services are an exception to this, but it proved difficult to find assisted living and residential programs that accepted Medical Assistance payments.¹⁵⁶⁷

Finally, New Hampshire state law requires that the average cost of home care cannot be more than one third the cost of nursing facility care; for mid-level assisted living, the average cost must be less than one-half. This creates a significant barrier to expanding home care and assisted living services.¹⁵⁶⁸ The ECI waiver is capped at a relatively low rate, and limits on personal assistance reimbursement and number of hours per day contrast starkly with the reimbursement for the same services in a nursing facility.¹⁵⁶⁹

In sum, the Systems Change projects to facilitate nursing home transition have shown demonstrated success and promising outcomes for consumers, but many barriers remain. In addition, grant-funded programs are by their nature difficult to generalize to the system as a whole. If, for example, the costs of transition from nursing facilities are paid by grant funds, sources to pay those costs, however modest, will be lacking when the grant period is over.

Efforts to provide community services for people on waiting lists received a dramatic boost from recent litigation, but the state budget crisis has seriously hampered implementation in FY 2003-2004. According to the state's quality assurance data, the number of persons on waiting lists for services has doubled in the last five years, from 164 in 1998 to 320 in 2002, and the average number of days on a waiting list increased from 249 to 391.¹⁵⁷⁰ Not surprisingly, New Hampshire advocates, like their counterparts in other states, have turned to litigation as a strategy to obtain needed services. In 1999, the Disability Rights Center, New Hampshire's Protection and Advocacy Agency, filed Bryson v. Shumway,¹⁵⁷¹ a case on behalf of persons with brain injury waiting to be served under the state's waiver for persons with acquired brain injury. On motions for summary judgment, the district court construed the home and community-based waiver provision of Title XIX of the Social Security Act, 20 U.S.C. § 1396n(c), to require a minimum of 200 persons be served under a waiver and granted partial injunctive relief in 2001. The court found that the reasonableness of the pace at which the waiting list moved and the existence of a "comprehensive, effectively working plan" were issues of material fact that precluded summary judgment.¹⁵⁷² On appeal, the Court of Appeals for the First Circuit reversed, finding that the statute did not create a numerical "floor" for the number of waiver recipients, and remanded the case to the district court to determine if the state's contention that it had eliminated the waiting list and was now in compliance with statutory notice requirements was correct.¹⁵⁷³

After the partial success of Bryson v. Shumway in federal court, the Disability Rights Center filed Harris v. Shaheen, an action on behalf of persons with developmental disabilities in state court, seeking to enforce New Hampshire's Services for Developmentally Disabled Act¹⁵⁷⁴ as well as the "reasonable promptness" requirement of Title XIX of the Social Security Act and the integration mandate of the Americans with Disabilities Act.¹⁵⁷⁵

While the waiting list cases were pending in the courts, the Department of Health and Human Services developed a "wish list" budget for FY 2004 that included the funding needed to eliminate waiting lists for services for people with developmental disabilities and acquired brain injury, at least in the priority 1 category.¹⁵⁷⁶ The Governor proposed a small increase in spending to reduce waiting lists - less than one-sixth the amount proposed by the Department;¹⁵⁷⁷ the legislature passed the total original requested by the Department, and the Governor promptly vetoed the appropriation, leaving persons on the waiting lists without hope of receiving needed services until much later in the year.¹⁵⁷⁸