• Types of Respite
• How do I choose a respite program or provider?
• How do I choose an Adult Day Care Program?
• How do I pay for Respite?

• Family caregivers need to have sufficient and regular amounts of respite time. Give careful thought to how you want to spend your respite time. Respite needs to be meaningful and purposeful for caregivers to fulfill their needs and plans, as well as safe and enjoyable for the care receiver.
• Respite is most effective when combined with other services and assistance, but don’t wait to take your break. You may also benefit from additional financial support, education, emotional and social support, and a sense of belonging with others, but before you can seek out those services, respite will give you a chance to step back and recharge.

To assess your own need for respite and to ensure that you are making the most of your respite time, please utilize RESPITE SERVICES: Enhancing the Quality of Daily Life for Caregivers and Care Receivers (English version updated June 2010) prepared by Dr. Dale Lund and others. (Spanish version)

Respite programs may utilize an available bed in a health care facility for families who require extended respite options and whose family member or friend requires skilled care; whereas, other respite programs may only offer time-limited (a few hours) services in the family’s home. In addition, respite services may be available to families through formal programs (i.e., trained staff) or may be available to families through informal networks (e.g., parent cooperatives, or cash subsidies from states to purchase respite through relatives and friends).

Respite services are usually offered on a sliding fee schedule, or there may be a combination of family fees, state, and federal funding, including Medicaid waivers, and/or private insurance.  Providers may be paid or unpaid in many of the following models (See Funding Sources).

The following descriptions are examples of local respite program models.

In-home Models

Many families prefer respite that is provided in the home. There are several advantages to in-home respite:

• The care recipient may be most comfortable in the home setting and does not have to adjust to a different environment.
• The parents/caregivers may be more comfortable if the care recipient does not have to leave the home;
• The home is already equipped for any special needs the child/adult may have.
• The cost is relatively economical (especially if you  hire and train your own provider).
• Transportation barriers for the care recipient are eliminated.

Sometimes in-home care is coordinated by a broker, an individual or agency who agrees to recruit, provides basic training, and keeps a database of all respite providers. Families can be matched with a provider by calling the broker and are usually responsible for training, payment, and repeat scheduling.  If you have a Lifespan Respite Program in your state, they will be able to assist you in finding providers, payment resources and training options.

Listed here are some of the typical models used in in-home respite.

Model 1: Home-Based Services

Home-based respite services may be provided through a public health nursing agency, a social service department, a volunteer association, a private nonprofit agency and/or a private homemaker service or home health agency. A trained and perhaps licensed employee of the agency is available to come into the home and offer respite. Ideally, services should be available twenty-four hours a day, 365 days per year.

Model 2: Sitter-Companion Services

Sitter services may be provided by individuals who are trained in caring for children or adults with special needs . Often this type of service can be a project of a service organization or specialized agency (Camp Fire, Jaycees, Junior League, local ARC or United Cerebral Palsy Associations), which is willing to sponsor training and/or maintain a register of trained providers to link to families in need.

Model 3: Consumer-Directed Respite

This model is similar to having a friend or relative volunteer to care for a child or adult with special needs. The primary difference is that the person providing care is identified or selected by the family and trained by a respite program or the families themselves. Providers may be paid or unpaid. If they are paid, it is often through a voucher program offered directly to family caregivers to allow them to locate, hire, train, and pay their own providers.

Out-of-Home Models

Out-of-home respite provides an opportunity for the care recipients to be outside the home. This may be a particularly attractive option for adolescents who are preparing to leave the family home for a more independent living arrangement, for young adults with disabilities who prefer to be with people their own age, or even aging populations with mild to moderate memory loss because it gives them an opportunity to experience new surroundings, different expectations, peer relationships and even cognitive and emotional stimulation. Families are free to enjoy time in their own home without the constraints of constant care, and they can devote more attention to siblings and other family members.

Listed below are some special considerations regarding out-of-home models.

• Transportation may be required and special equipment may need to be moved.
• The individual receiving care may not like the unfamiliar environment or may have difficulty adjusting to the changes.
• The services may be offered in a variety of settings more restrictive than the care recipient’s home, such as special medical centers or nursing homes.

Model 4: Family Care Homes or Host Family Model

In this model, respite is offered in the provider's home. This could be the home of a staff person from a respite program, a family day care home, a trained volunteer's family home, or a licensed foster home used only for respite stays. Offering respite in a provider's home enables an individual to receive services in a more familiar setting. It is recommended that homes used under this model be licensed under state regulations governing foster homes or similar homes used for group care.

Model 5: Respite Center-based Model

Some respite programs contract with existing day care centers to provide respite to children with special needs. This is an effective model in rural areas, because it allows children to be in a supervised environment in a facility that may be relatively close to home. Children may be placed in these settings on a short term "drop in" basis, as well. Day care centers may be housed in churches, community centers, and after school programs. Not all centers are licensed by the state to provide services. Similar centers utilizing church, mosque or synagogue social halls, community centers, or senior service centers offer similar services for the aging population on a regular, daily, or intermittent basis (e.g., one weekend day a month).

Certain service organizations, such as Easter Seals, human service agencies, or community-based private independent respite providers may offer respite in a center-based setting, employing trained staff and/or volunteers.

Model 6: Respite in Corporate Foster Home Settings for Children and Teens

Model 7: Residential Facilities

Some long-term residential facilities, particularly those serving persons with developmental disabilities, have a specified number of beds set aside for short-term respite. Some examples of such facilities are community residences (such as group homes and supervised apartments), nursing homes, and state-owned facilities. Increasingly, assisted living programs or nursing homes for the aging population are offering respite for overnight, weekend or extended stays.

Model 8: Parent/Family Caregiver Cooperative Model

Parent or Family Caregiver cooperatives have been developed in communities, especially rural areas, where respite services are very limited. In this type of model, families of children with disabilities and/or chronic illnesses develop an informal association and "trade" respite services with each other. This model has been used successfully for young veterans with traumatic brain injury or other conditions who are living at home. This exchange program allows families to receive respite on scheduled dates. In most parent or family caregiver cooperatives, fees are not assessed. This model has proven to be especially effective for families whose children or other family members have similar disabilities.

Model 9: Respitality Model

Respitality is an innovative concept for providing respite. It provides a cost-effective partnership between the private sector and respite agencies. During Respitality, participating hotels provided the family with a room, a pleasant dining experience, and perhaps entertainment while a local respite program provides respite either in the family's home or in an out-of-home respite situation. The Respitality concept was developed by United Cerebral Palsy of America.

Model 10: Hospital-Based

Model 11: Camps

Camp has been a form of respite for many families for many years. Whether or not a child has a disability, camp can be a positive experience for any child as well as a break for parents/caregivers. For children with disabilities, chronic or terminal illnesses, the chance to participate in either an integrated or adapted camp can be life-expanding. Many places around the country offer such experiences, either as day or overnight camps. Such models are sometimes available for adults as well through agencies such as Easter Seals or United Cerebral Palsy.

Model 12: Adult day care centers

Also known as adult day services, have been providing a form of respite for caregivers for more than twenty years. Such services have expanded dramatically in the last decade as demand has increased but also as new funding sources, such as Medicaid waivers, became available. Adult day care centers provide a break (respite) to the caregiver while providing health services, therapeutic services, and social activities for people with Alzheimer’s disease and related dementia, chronic illnesses, traumatic brain injuries, developmental disabilities, and other problems that increase their care needs. Some adult day care centers are dementia specific, providing services exclusively to that population. Other centers serve the broader population.

One difference between traditional adult respite, both group and in-home care, and adult day care is that adult day centers not only provide respite to family caregivers but also therapeutic care for cognitively and physically impaired older adults.

Generally, although programs vary, participants attend the program for several hours a day to a full day (eight hours), up to five days a week. Most programs do not offer weekend services, although a few may offer half-day services on Saturdays.

How to Choose a Respite Provider

Some states require licensing for respite providers. If your state does not, it is even more important to do a thorough background and qualifications check, especially if you are dealing with individuals who are not associated with companies or agencies. Most company and agency providers will have done background and reference checks for their employees, but do not assume, ask instead. Here is a quick checklist to use when considering a provider:

1. Telephone screening
2. Personal Interview 
3. Ask for references
4. Check references, criminal background
5. Evaluate costs and financing
6. Write a contract that provides specific details

The idea is to get to know the prospective provider as well as possible before committing to the relationship. Then, you must communicate your expectations in very specific terms. Finally, these expectations should be in writing to help assure that both parties understand them, and will not need to rely on memory if and when difficulties arise later.  For more information on respite for specific ages or conditions, see free downloadable ARCH Fact Sheets.  ARCH also recently updated its National Respite Guidelines that may help you learn what to look for in a high quality respite setting.

A variety of consumer guides, workbooks, and checklists also are available to help you sort out the myriad of options you may have in your community, and in some instances, offer guidance so you can train the respite provider yourself:        

• A Practical Guide to Respite for Your Family by Molly Dellinger-Wray and Monica Uhl with the Partnership for People with Disabilities (formerly the Virginia Institute for Developmental Disabilities), a university affiliated program at Virginia Commonwealth University
• The Respite Care Workbook from the Child Neurology Foundation
• Get Creative About Respite-A Parent's Guide and Get Creative about Respite - What You Need To Know About Me from the Connecticut Lifespan Respite Coalition
• Finding Caregivers and Respite Providers compiled by the SC Respite Coalition and Family Connection
• Relax.Take a Break: A Family Guide to Respite for Children in Michigan.
• Family Guide to Respite prepared by Special Kid's Network's regional staff in collaboration with their community partners and the Pennsylvania Department of Health's Children with Special Health Care Needs Consultants

• Respite Care Guide: Finding What's Best For You - The Alzheimer's Association
• A Respite Guide for Caregivers and Providers: Developed by the Texas Dept. on Aging in Partnership with the Area Agency On Aging Caregiver Task Force
• Guide To Caregivers Prepared by Dick Strayer, a result of the "Caregiver Project", a committee of the Saskatoon Council on Aging.

How Do I Choose an Adult Day Care Center?

Family members must do some research to determine whether the adult day care center is right for their loved ones. The components of a quality adult day care program should include the following:

• Conducts an individual needs assessment before admission to determine the person’s range of abilities and needs;

• Provides an active program that meets the daily social, recreational, and rehabilitative needs of the person in care;

• Develops an individualized treatment plan for participants and monitors it regularly, adjusting the plan as necessary;

• Provides referrals to other needed community services;

• Has clear criteria for service and guidelines for termination based on the functional status of the person in care;

• Provides a full range of in-house services, which may include personal care, transportation, meals, health screening and monitoring, educational programs, counseling, and rehabilitative services;

• Provides a safe, secure environment;

• Uses qualified and well-trained volunteers;

• Adheres to or exceeds existing State and national standards and guidelines.

A good place to begin searching for a program is the Yellow Pages, which will list possible options under "Day Care Centers-Adult." The Better Business Bureau may have information on for-profit adult day care centers. At the national level, contact the National Council on Aging (NCOA), National Adult Day Services Association (NADSA) for a set of guidelines for adult day service programs http://www.nadsa.org/knowledgebase/details.php?id=557

Local Area Agencies on Aging (AAA) can also direct you to adult day care centers in your area. Contact the  Eldercare Locator to find the AAA nearest you. Ultimately, word of mouth is often one of the best ways of finding quality adult day care.

How Do I Pay for Respite?

A range of possible state and federal funding sources may be available to help you pay for respite. If you have a State Lifespan Respite Program or State Respite Coalition, they should be able to link you to existing funding sources or assist with possible funding sources that may be unique to your state. For state-by-state information on funding sources for adult respite, visit the Family Caregiver Alliance Family Care Navigator. For Medicaid waiver funding in your state or other available state funding possibilities, you can also visit the ARCH National Respite Locator and click on your state for program eligibility and funding information.

A few possibilities include:

Medicaid Waivers: Generally, every state offers some respite assistance though various Medicaid Waivers. Each state’s eligibility critieria and funding for waivers are different and you should check with your state’s Medicaid office. To find out which waivers are available in your state and information about eligibility, visit the ARCH National Respite Locator and click on the map.

Medicaid State Plan: If you live in Iowa, Colorado, Nevada and Washington, the four states that adopted the Section 1915(i) Medicaid State Plan Option for Home and Community-Based Services and you qualify for Medicaid under income guidelines, respite may be covered under your state’s Medicaid plan without the need for a waiver.

Medicare Hospice Benefit: If someone you love is in hospice, their caregivers are eligible for respite funding under Medicare.

National Family Caregiver Support Program: Funding may also be available if you are caring for someone over the age of 60, someone of any age with Alzheimer’s, if you are a grandparent age 55 or older caring for a grandchild, or the relative of an adult with certain disabilities, through the National Family Caregiver Support Program which is administered through your local Area Agency on Aging (AAA). Visit the Elder Care locator service  to contact your AAA about respite funding options.

State Family Caregiver Support Programs: If your state has a state-funded family caregiver support program, you may have respite funding available. Vvisit the Family Caregiver Alliance Family Care Navigator.

Veterans: Veterans eligible for outpatient medical services can also receive non-institutional respite, outpatient geriatric evaluation and management services, and therapeutically-oriented outpatient day care. Respite care may be provided in a home or other non-institutional setting, such as a community nursing home. Ordinarily, respite is limited to no more than 30 days per year. The services can be contracted or provided directly by the staff of the Veterans Health Administration (VHA) or by another provider or payor.  A new program administered by the Department of Veterans Affairs, the Family Caregiver Program of the Caregivers and Veterans Omnibus Health Services Act of 2010,provides additional support to eligible post-9/11 Veterans who elect to receive their care in a home setting from a primary family caregiver. For more information, click here. 

Military Families: Military families should also look to TRICARE's Extended Care Health Option (ECHO) or the Military Exceptional Family Member Program (EFMP), which offers respite to anyone in the military who is enrolled in the EFMP and meets the criteria. 

Funding for Adult Day Care:  Medicare does not cover day care costs, but Medicaid can pay all the costs in a licensed day care center with a medical model or an Alzheimer’s environment if the senior qualifies financially. Some day care centers offer need-based scholarships. Others may use a sliding fee scale based on income. Private medical insurance policies sometimes cover a portion of day care costs when registered, licensed medical personnel are involved in the care. Long-term care insurance may also pay for adult day services, depending upon the policy. Dependent care tax credits may be available to the caregiver as well.

References

ARCH National Respite Resource Center (Rev. 1994). Respite for Children with Disabilitiesand Chronic or Terminal Illnesses. Chapel Hill: ARCH Factsheet Number 2, 1992

ARCH National Respite Resource Center (2002). Adult Day Care: One Form of Respite for Older Adults.Chapel Hill: ARCH Factsheet Number 54, April 2002. 

 ARCH National Respite Resource Center (2002). Respite for Persons with Alzheimer’s Disease or Related Dementia. Chapel Hill: ARCH Factsheet Number 55, April 2002.

ARCH National Respite Network and Resource Center (2012). Building Blocks for Lifespan Respite: Federal Guide to Funding for Adult's and Children's Respite. Chapel Hill: Lifespan Respite 101 Toolkit: Fact Sheet 2.

Dougherty, Susan and J. Kagan. (2012). Federal Funding and Support Opportunities for Respite.  Chapel Hill, NC: ARCH National Respite Network and Resource Center.

Dougherty, Susan. (2012). State Funding Streams for Respite Across the Lifespan. Chapel Hill, NC: ARCH National Respite Network and Resource Center.

Edgar, Maggie and Monica Uhl. (2011). 2011 National Respite Guidelines. Chapel Hill, NC: ARCH National Respite Network and Resource Center.

Perrin, Catherine. (2012). Home and Community-Based 1915(c) Medicaid Waivers for Respite Support, State-by-State Tables of Medicaid Waiver Information. Chapel Hill, NC: ARCH National Respite Network and Resource Center.