Long-Term Services and Supports Recommendations
January 2013
PDF Version:
http://aspe.hhs.gov/daltcp/napa/011413/Mtg7-Recom3.pdf
(9 PDF pages)
- States should assure that they have robust, dementia capable LTSS
systems.
- Every state should identify a state lead entity for AD to
coordinate activity across state agencies and programs and work with the
private sector to implement strategies in concert with the National
Alzheimers Plan.
- The dementia capable systems should include a full array of LTSS
that are culturally and linguistically competent and evidence-informed or
evidenced-based. Services and supports should be available in individual and
community settings. According to the National Council on Aging, evidenced-based
programs come from "a process of planning, implementing, and evaluating
programs adapted from tested models or interventions."
- The array of services for people with AD include -- outreach;
early detection; diagnostic services; care and estate planning; treatment
(medical, psychiatric, pharmacological and social/cognitive interventions e.g..
memory classes); care/treatment advocacy (e.g.. medication management, benefits
counseling and patient navigation); early stage support services; social
support services (such as adult day services, activity of daily living supports
like escorted transportation, meal preparation, home and personal care
assistance, etc.) supportive housing and home safety assessment/modifications;
safety services (medic-alert, safe return, GPS based programs, etc.); hospital
and community based end-of-life and palliative care.
- Services for families and caregivers include outreach;
advocacy; disease and self-care education; caregiver assessment; psycho-social
support groups; supports for long distance caregivers; caregiver centered
dementia care management (such as T-Care); legal and financial (including
family care tax relief policies and benefits counseling) services; a continuum
of respite services; and supportive workplace family care policies.
- Public and private providers should utilize innovative gap
filling and financing strategies.
- The Centers for Medicare & Medicaid Services (CMS) should
provide guidance to all states about how to add adult day services as a state
optional service under Medicaid.
- Services should encourage development and provide LTSS linkages
to state, local; and private supportive housing resources.
- Services should encourage development and implementation of
dementia-capable transportation services.
- Public and private payments for services should reflect
reasonable compensation that recognizes any special training for dementia
capable service providers.
- HHS should provide federal funds to support a state lead entity in
every state and territory. This entity will facilitate development of the
states dementia capable systems, coordinate available public and private
LTSS, conduct service gap analysis, identify opportunities for efficiency, and
enable ongoing stakeholder input to address needs across all sectors and
systems. HHS should use available funds to begin this process in 2013.
- The state lead entity will be responsible for: facilitating
development of a dementia capable system, coordinating public and private
resources and programs; building capacity for epidemiology; evaluating programs
and improving quality; maximizing the positive impact of services for people
with AD and their caregivers; reducing duplication; coordinating public
awareness efforts; and assuring that evidenced-based, high quality services are
available in their state.
- HHS should identify an appropriate office or operating division
to manage funds for the program supporting the state lead entities and convene
representatives of state lead entities regularly.
- The identified office should develop standards for state lead
entities that should be met as a condition of funding. Understanding that
states are organized differently, standards should be flexible enough to
accommodate various entities as lead, based on what is appropriate for each
state.
- Governors should be enlisted to designate the lead entity for
their state, and that designation should carry authority to impact program
activity across agency lines when necessary.
- States should draft (or update) a state plan to address AD, in
concert with the National Plan.
- HHS should fully fund the costs of cognitive impairment and
caregiver surveillance through the Behavioral Risk Factor Surveillance System
in every state.
- HHS should engage all relevant federal agencies to include
research on LTSS that addresses dementia capability in their research agendas.
Topics needing further research include:
- Interventions for persons in the early stages of dementia,
including those that mitigate symptoms of the disease.
- Interventions for persons with Down syndrome and other
intellectual disabilities that are at high risk of acquiring dementia as they
age.
- Impact of caregivingon health and quality of life of caregivers.
- Translation of interventions for persons with dementia and their
caregivers into culturally appropriate programs.
- Translation of interventions for persons with dementia and their
caregivers into community settings.
- State education and health agencies and others should include key
information about AD in all curricula for any profession or career track
affecting LTSS.
- State education agencies, other relevant state agencies, regional
accrediting bodies, and professional organizations should require that current
information about AD be included as a condition of approval of any curriculum
or course of study leading to relevant provider licensure or certification.
- Appropriate organizations should require that current information
about AD be included in all relevant continuing education activity and all
relevant state recertification programs.
- State, local, and private sector first responders, health and
human service personnel, and others who serve the public should receive
appropriate information and training regarding AD and the early warning signs
of possible cognitive impairment to assure they can effectively perform their
work.
- State, local and private sector organizations should ensure that
paraprofessional caregivers in every venue are adequately trained and
compensated.
- These organizations should require that paraprofessional
caregivers receive sufficient training to demonstrate dementia competence from
a reliable source.
- States should enact policies that ensure that their hours and pay
reflect fair and reasonable compensation because many of these workers are
working multiple shifts at below subsistence wages, often with few benefits,.
- Public and private sector compensation should reflect the
completion of a prescribed training program.
- Federal agencies should utilize every opportunity to help assure
this recommendation is carried out, beginning in 2013.
- Congress and CMS should redesign Medicare coverage and
physicians and other health care providers reimbursement to
encourage appropriate diagnosis of AD and to provide care planning to diagnosed
individuals and their caregivers.
- Congress should pass legislation to create Medicare coverage for
a package of services that covers the clinical diagnosis of AD as well as care
planning for the individual and their caregivers.
- This Medicare coverage should include care planning with a family
caregiver even if the individual with the disease is not present.
- In exchange for Medicare reimbursement for this package of
services, physicians and other healthcare providers should be required to
document the AD diagnosis and any associated services provided in the
individuals medical record.
- The Health Resources and Services Administration (HRSA) and CMS
should clarify and disseminate information to providers about the procedures
under Health Insurance Portability and Accountability Act with regard to
sharing medical information with caregivers related to dementia, prognosis, and
care planning in FFY 2013.
- LTSS systems should refer people to a healthcare provider for
diagnosis whenever they are admitted to or assessed for eligibility for LTSS
and exhibit signs of cognitive impairment.
- The state lead entity should assure that this recommendation is
included in any assessment for eligibility for LTSS.
- Providers engaged in diagnosis should consider the National
Institute on Agings 2011 guidelines for diagnosis of Alzheimers
disease and rule out and treat any conditions that may mimic this disease.
- Whenever a person exhibits symptoms of cognitive decline,
providers should consider a diagnosis using the 2011 guidelines.
- Federal agencies should assure that appropriate training
resources are available to health care providers on the use of the guidelines.
- The process of diagnosis should include engaging individual and
family in advance care planning (health, legal, estate, and financial).
- Health and LTSS providers involved in diagnosis should include
advance care planning in the health and LTSS care plan after discussion with
the individual and family members as appropriate.
- Health and LTSS providers should have ready access to information
for referral of people diagnosed with AD and their family to community
resources for financial and estate planning.
- The state lead entity for AD should assure that an inventory of
community resources is maintained through appropriate state, local, and private
resources. This should be one of the activities eligible for federal funds as
available.
- HHS should assure that health and related systems funded with
federal resources should improve chronic disease treatment and related services
for people with AD.
- People with AD often have other (multiple) chronic conditions.
Treatment options for persons with AD are limited and prognosis is negatively
affected when individuals have acute flare-ups related to their other
conditions or complications, (e.g., stroke, chronic obstructive pulmonary
disease, coronary heart disease). Therefore, HHS, states, and private sector
plans or providers should require that care plans for people with AD should be
tailored to all of their conditions, especially during recovery and
rehabilitation.
- Providers should incorporate training regarding the impact of AD
on care for comorbid conditions in existing pre-service and in-service training
curricula.
- Professional organizations should develop tools and guidance for
clinicians and social service professionals.
- Professional organizations should develop tools for caregivers,
which help them with manage multiple chronic conditions. These tools should
link to the HHS Framework to Address Multiple Chronic Conditions.
- HHS should develop quality measures and indicators for the
comprehensive care and treatment of individuals with AD.
- The Agency for Healthcare Research and Quality -- in consultation
with the National Quality Forum, the Institute of Medicine, and various
stakeholders -- should develop quality care measures and indicators for
diagnosis, treatment, and care of individuals with AD.
- Over time, these quality measures and indicators should cover
care in the full array of medical and LTSS settings; and care coordination and
transitions among settings.
- The Centers for Medicare and Medicaid Services (CMS) should
implement demonstration projects to study the application of dementia quality
care measures and indicators as they are developed.
- CMS should implement policies for Medicare and Medicaid to embed
the quality measures and indicators in the health and LTSS care system.
- Practice recommendations for care in every setting should be
embedded in CMS federal and state surveillance and quality improvement
systems.
- Stakeholders should develop or update consensus practice
recommendations for the full array of LTSS settings.
- These guidelines should be widely disseminated and embedded in
all federal and state surveillance and quality improvement systems.
- Practice recommendations should include the appropriate
management of AD and common co-morbid physical and behavioral health
conditions.
- Recommendations for end-of-life or palliative care should be
incorporated into all CMS surveillance and quality improvement systems at the
earliest possible time.
- Because at this time AD is a terminal illness marked by
diminishing capacity, providers should discuss and document use of palliative
care and desires regarding end-of-life care as early as practical in the
disease process.
- Federal and state surveillance and quality improvement systems
should all include measures of whether this communication has taken place in a
meaningful way.
- HHS should provide grants through CMS Center for Medicare
and Medicaid Innovation (CMMI) for medical home pilot projects specifically
targeted at improving medical and chronic condition management for individuals
with AD, and coordination with family and community care providers in the full
array of settings.
- Within one year, CMMI should provide grants for medical home
pilot projects specifically targeted at Medicare beneficiaries with AD.
- Within one year, CMMI should provide grants for medical home
pilot projects specifically targeted at dual eligible individuals (those
seniors eligible for both Medicare and Medicaid) with AD.
- CMS should incorporate those projects that prove successful into
the Medicare and Medicaid programs.
- HHS should convene a blue ribbon panel of experts to recommend one
or more models of palliative care for people with advanced dementia, including
eligibility criteria and financing mechanisms, and provide grants through CMMI
to implement and evaluate the models.
- HHS should create a specific grant round of pilot projects through
CMMI to implement and evaluate ways to reduce preventable emergency department
visits, hospitalizations, and length of hospital stays for individuals with AD,
who are living in the full array of settings.
- HHS, states, and the private sector should work together to
develop and evaluate methods of improving hospital care, care coordination, and
transitions of care for people with AD, including training approaches and
proposed quality measures.
- Within one year of formation of this partnership, CMMI should
create a specific grant round focused exclusively on pilot projects and
demonstrations to reduce emergency department visits, preventable
hospitalizations and length of hospital stays among individuals with AD.
- Funded projects should include at least one project that targets
individuals from diverse communities.
- The grant round should also consider funding projects aimed at
reducing re-hospitalizations among those with AD by, for example, testing
models of transitional care.
- CMS should incorporate those projects that prove successful into
the Medicare and Medicaid programs, as appropriate.
- Within one year, CMS should gather findings from Community-Based
Care Transitions Programs to disseminate widely and consider policy and
reimbursement changes to Medicare that would make transitions safer and less
common.
- HHS and state lead entities should partner to assure access to the
full array of LTSS for specific populations of people with AD including younger
people, non-traditional families, people with intellectual disabilities, such
as Down syndrome, and racial and ethnic minorities who are at increased risk of
acquiring AD.
- HHS and state lead entities should work with providers to assure
that supports are tailored for caregivers/family members of specific
populations with AD.
- All guidelines and quality improvement efforts should include
specific populations.
- Congress should amend the Older Americans Act Title III to make
these services available to those with younger-onset AD.
- The Administration on Aging (AoA) should track and report use of
Title III services, especially under the National Family Caregiver Support Act,
by those with younger-onset AD to assure that data is readily available on
related costs for future planning.
- Services should include provisions for support for children and
teenagers who provide supports for persons with AD.
- Recommended use of Federal Funds ($10.5 million) currently
proposed for AoA
- HHS (AoA) should use the $10.5 million for state grants to
seedthe development of state action plans and state lead entities that maximize
use of public and private resources to support dementia capable LTSS.
- Governors should designate the state lead entity and commit to
sharing publicly a state plan with recommendations for action.
- State agencies and relevant partners should be included in the
state action plan
- Legislation enacting this program should require matching funds
so as to expand program impact.
- This program should be expanded in future years with additional
resources.
- Additional funding available at HHS or other Operating Divisions
in FFY 2013 and beyond should support this activity.
- Estimated funds necessary to fully fund all states action
plans = $85 million.
- Funding for the Alzheimers Disease Supportive Services
Program (ADSSP) should be restored to the FFY 2003 level of $13.4 million.
- ADSSP supports essential evidenced-based and innovative practices
that assist people with AD and their caregivers in the community.
- HHS, state lead entities and partners can use the lessons learned
from this program to spread the availability of valuable services and should
develop a long-range plan to convert ADSSP from a demonstration program to a
program that provides widely-available services based on the findings from the
demonstrations.
- Fully fund caregiver support under AoA
- AoA currently has the National Family Caregiver Support Program,
a component of which can be expanded to better meet the needs of caregivers of
individuals with AD.
- These improvements may result in mitigation of other system
costs.
- This program is currently dramatically underfunded and therefore
unable to meet the needs of this growing population of caregivers.
- Fully funding this program can enhance other related efforts to
improve quality of life for people with AD and their caregivers.
- We recommend that program funding be doubled to move toward full
funding.
- HHS, state lead entities, and providers should assure that
caregiver physical health/ behavioral health risk is assessed and addressed
regularly. Caregiver illness and mortality contribute to the enormous personal
and financial cost of AD.
- The health and well-being of a caregiver has a direct impact on
the health and quality of life of a person with AD.
- Whenever a caregiver accompanies a person with AD to a health
care appointment; emergency department visit; or hospitalization, the attending
health care provider should ask if the caregiver is well for the purpose of
information and referral to services, if needed.
- HHS should explore adding a Health Effectiveness Data and
Information Set question to determine whether caregiver risk assessment is
occurring.
- Appropriate federal, state, and private sector organizations
should assure that the importance of this action is incorporated into training
of health and LTSS providers and incorporated into education messages for the
public.
- Caregiver needs assessments should be made an explicit, permitted
use of federal funds by states under Medicare, Medicaid, and the National
Family Caregiver Support Program.
- The Office of the National Coordinator for Health Information
Technology, in partnership with the private sector, should work to assure that
development of health information technology includes tools that assist
caregivers of persons with AD. Tools could assist caregivers by: helping them
organize the care they provide, educating them about dementia and multiple
chronic conditions, and providing tools to help them maintain their own mental
and physical health.
- Caregivers should have access to reminder tools; communication
methods among caregivers; home monitoring tools; and enhanced decision supports
that help instill confidence and reduce isolation.
- Caregiver health and wellbeing should be incorporated into
electronic records.
- HHS should launch a nationwide public awareness campaign to
increase awareness and to promote early detection of AD.
- HHS should coordinate a public awareness campaign with
relevant federal agencies and other stakeholders in a public-private
partnership to increase awareness of AD and to promote early detection and
diagnosis.
- HRSA should partner with CDC and other HHS agencies, as well as
professional groups to launch a parallel awareness campaign targeted at
physicians and other health care professionals about the benefits of early
detection and diagnosis of AD.
- Both campaigns should include promotion of Medicares Annual
Wellness Visit as a vehicle for health care professionals and patients to talk
about memory problems and cognitive function.
- The campaigns should include specific efforts in diverse
communities and populations, including younger-onset individuals and persons
with intellectual disabilities.
- The campaigns should involve appropriate state, county, and local
organizations, including public health departments, and encourage them to
launch public awareness and early detection campaigns of their own.
Where to?
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Last updated: 01/15/2013