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Summary of the Lifespan Respite Act
(PL109-442):
Use of Funds:
The Act authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalition or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training. Grantees will have the option of using funds for training programs for family caregivers in making informed decisions about respite services; for other services essential to the provision of respite; and for training and education for new caregivers. Timelines for Implementation
What is a Lifespan Respite Program?
A lifespan respite program provides a coordinated system of accessible, community-based respite care services for family caregivers of children and adults with special needs. Lead Agency Eligibility
Funds would be provided on a competitive grant basis to Aging and Disability Resource Centers in collaboration with public or private nonprofit statewide respite coalitions or organizations (memorandum of agreement required in application). Priority would be given to applicants who show the greatest likelihood of implementing or enhancing lifespan respite care statewide.
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Who Can Access Lifespan Respite Programs?
Caregivers who are family members, foster parents, or other adults providing unpaid (clarified in report language) care for an adult or child with a special need may access these programs. Adult with special need is defined broadly as a person 18 years of age or older who requires care or supervision to meet the person's basic needs, to prevent physical self-injury or injury to others, or to avoid placement in an institutional facility. A child with a special need is a person less than 18 years of age who requires care or supervision beyond that required of children generally to meet the child's basic needs or prevent physical self-injury or injury to others.
Application Submission
The Governor submits application on behalf of the State Agency that administers the Older American's Act, the State's Medicaid program, or another agency designated by the Governor.
Federal Administration
Secretary of Health and Human Services is required to work in cooperation with the National Family Caregiver Support Program Officer of the Administration on Aging and other respite care programs within the Department to ensure coordination of respite for family caregivers
Funding Authorization:
$30 million for FY 07, $40 million for FY 08, $53.3 million for FY 09, $71.1 million for FY 2010 and $94.8 for FY 2011
National Resource Center:
Establishes National Resource Center on Lifespan Respite Care
GAO Report:
A GAO report on Lifespan Respite Programs is required by 2011.
President Signs Lifespan Respite Care Act
(Click here for a copy of PL 109-442)
Washington , DC (December 21, 2006)
The Lifespan Respite Task Force, a coalition of over 170 national, state, and local organizations, applauds the signing of The Lifespan Respite Care Act of 2006 (HR 3248 ) into law . The bill was introduced and championed in the US House of Representatives by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI). A companion bill in the Senate was cosponsored by Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA). The Lifespan Respite Task Force includes a diverse group of national and state organizations: state respite and crisis care coalitions; health and community social services; disability, mental health, education, faith, family caregiving and support groups; groups from the child advocacy and the aging community; and abuse and neglect prevention groups.
Family caregivers are providing 80% of long-term care in the US , a level of care valued at $306 billion a year, more than what is spent on nursing home and paid home care combined . Even though most families take great joy in providing care to their loved ones so that they can remain at home, the physical, emotional and financial consequences can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges imposed by constant caregiving.
The new law would authorize $289 million over five years for state grants to develop Lifespan Respite Programs to help families access quality, affordable respite care. Lifespan respite programs are defined in the Act “as coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs.
When the bill passed the House, Rep. Ferguson, whose own father was a caregiver for his ill mother for 6 years said , “Today's action by the House of Representatives represents not only an important victory for family caregivers nationwide, but it also sends America's caregivers a clear message: Your selfless sacrifice is appreciated, and help is on the way.”
“On behalf of over nation's family caregivers who desire to keep their loved ones at home despite limited support, we commend Rep. Ferguson, Vice-chair of the Health Subcommittee of the House Energy and Commerce Committee, Rep. Langevin, and Senator Hillary Clinton (D-NY) and Senator Warner (R-VA) for their leadership, and especially want to thank them, their colleagues from both sides of the aisle, and the White House for taking action to help the burgeoning numbers of family caregivers,” said Jill Kagan, Chair of the National Respite Coalition, and facilitator of the Lifespan Respite Task Force. “Relatively minimal investments in respite help family caregivers provide this care at home and in the community. At a time when federal and state fiscal resources are limited, this is the most compassionate and fiscally responsible thing we can do, and a most welcome gift in this holiday season.”
Background: Lifespan Respite Task Force, ARCH National Respite Coalition
The Lifespan Respite Task Force, a coalition of over 170 national and state organizations applauds the action taken today by the President to sign the “Lifespan Respite Care Act of 2006,” (HR 3248) into law, demonstrating the breadth of strong bipartisan support for the measure. The House bill was originally introduced by Rep. Mike Ferguson (R-NJ) and James Langevin (D-RI), along with Representatives Terry (R-NE), Norwood (R-GA), Wilson (R-NM), and Brown (D-OH), and had an additional 79 cosponsors from both parties . The Senate bill was introduced by Senator Hillary Clinton (D-NY), Senator John Warner (R-VA), and Senators Mikulski (D-MD), Smith (R-OR), Kennedy (D-MA), Collins (R-ME), Jeffords (I-VT), Bond (R-MO), Murray (D-WA), Cochran (R-MS), Boxer (D-CA), Snowe (R-ME), Kerry (D-MA), Talent (R-MO), Nelson (D-NE), Coleman (R-MN), Durbin (D-IL), and Hagel (R-NE). The bill would authorize grant funds to states to develop Lifespan Respite Programs to help families access quality, affordable respite care regardless of age or disability.
Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non caregivers. Out-of-home placement, or something even more heartrending, may seem like the only option. Tragically, a study of elderly spousal caregivers (aged 66-96) found that caregivers who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.
Respite, often the most frequently requested family support service, provides caregivers with occasional relief necessary to sustain their own health or attend to other family members, as well as quality, meaningful experiences for the care recipient. Many caregivers may also find themselves in crisis situations due to job loss, homelessness, substance abuse or their own ill health. A temporary haven to insure the safety of the person for whom they provide constant care becomes an absolute necessity.
Respite has been shown to help sustain family caregiver health and wellbeing, avoid or delay out-of-home placements, and reduce the likelihood of abuse and neglect. According to the ARCH National Respite Network data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages. There are also important cost savings due to respite.
Despite this success, access to quality respite care is difficult, especially for individuals with certain disabilities or chronic illness such as behavioral, mental health or severe medical conditions, or in some rural and urban centers where resources may be scarce. Shortages of trained providers and quality respite programs, limited family resources to pay for respite care, restrictive program eligibility criteria based on age, income or disability, and fragmented and duplicative systems, keep many families from accessing the respite they need.
The Lifespan Respite Care Act of 2006 is based on model state lifespan respite programs that have successfully addressed all of these barriers. Three states have enacted legislation to implement Lifespan Respite Programs (OR, NE, WI), which establish state and local infrastructures for developing, providing, coordinating and improving access to respite for all caregivers, regardless of age, disability or family situation. Oklahoma has also implemented a successful Lifespan Respite program. The Lifespan Respite Care Act of 2006 will help establish respite as a national priority and provide the assistance states and localities need to move forward.
The Lifespan Respite Task Force, a working group of the National Respite Coalition (NRC), is a broad coalition of national and state organizations which came together to develop and promote a national respite policy. The NRC is the policy division of the membership organization, the ARCH National Respite Network.
Aging and Disability Resource Centers
Since 2003, 43 states have received Aging and Disability Resource Center initiative grants. Click the link that follows to view a map that shows the states receiving ADRC awards in 2003, 2004 and 2005 as well as summaries of each state's proposed project. The ADRC projects provide a good opportunity for collaboration! http://www.adrc-tae.org/tiki-index.php?page=PublicHomePage
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The Mission of the National Respite Coalition
The Mission of the ARCH National Respite Coalition is to secure quality, accessible, planned and crisis respite services for all families and caregivers in need of such services in order to strengthen and stabilize families, and enhance child and adult safety.
The Coalition works to achieve these goals by preserving and promoting respite in policy and programs at the national, state, and local levels. For more information on NRC’s activities, write the National Respite Coalition at 4016 Oxford St., Annandale, VA, 22003, call Jill Kagan at (703) 256-9578, or e-mail her at
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When you join the National Respite Network you are automatically a member of the National Respite Coalition, the Policy Division of the ARCH National Respite Network, and can receive the latest updates on Congressional legislative activity important to respite and the families you serve, as well as information from the states about program implementation. The National Respite Network is a program of the Chapel Hill Training-Outreach Project.
Contact:
Jill Kagan, MPH
Chair, National Respite Coalition
National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
703-256-9578
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