National Caregiving Fact
In 2009, about 42.1 million family caregivers in the United States provided care to an adult with limitations in daily activities at any given point in time, and about 61.6 million provided care at some time during the year. The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007. This amount ($450 billion) is more than total Medicaid spending in 2009, including both federal and state contributions for both health care and LTSS ($361 billion), and as much as the total sales of the worldâ€™s largest companies, including Wal-Mart ($408 billion in 2009, the most of any company) and the three largest publicly held auto companies combined (Toyota, Ford, Daimler: total $439 billion). Including caregiving for children with special needs in the total would add 4 to 8 million additional caregivers and another $50 to $100 billion to the economic value of family caregiving (Lynn Feinberg, Susan C. Reinhard, Ari Houser, and Rita Choula, Valuing the Invaluable: 2011 Update The Growing Contributions and Costs of Family Caregiving, AARP Public Policy Institute, 2011). To see full AARP Brief, click here.
Summary of the Lifespan Respite Program
Use of Funds: The Act authorizes competitive grants to eligible state agencies 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. Aging and Disability Resource Centers must be collaborators as well. 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.
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 specified state agencies or an agency appointed by the Governor. The state lead entity must involve an Aging and Disability Resource Center and work in collaboration with a public or private nonprofit statewide respite coalition or organization (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.
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.
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.
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
(1) $30,000,000 for fiscal year 2007;
(2) $40,000,000 for fiscal year 2008;
(3) $53,330,000 for fiscal year 2009;
(4) $71,110,000 for fiscal year 2010; and
(5) $94,810,000 for fiscal year 2011.
National Resource Center:
Establishes National Resource Center on Lifespan Respite Care
A GAO report on Lifespan Respite Programs is required by 2011.
Click here for a copy of the Act.
President Bush signs the Lifespan Respite Care Act, Washington, DC, December 21, 2006.
Public Law PL109-442, Lifespan Respite Act of 2006,click here
Section-by-Section Summary of the Act, click here
Congressional Record of House and Senate Floor Statements on Passage of Lifespan Respite Care Act (December 2006), click here.
This document provides the actual transcribed Congressional Floor Statements of key Senators and House Members as they debated final passage of the Lifespan Respite Care Act in 2006. These floor statements, which carry the weight of law, provide critical information on Congressional intent for how the federal government, as well as states, are expected to implement Lifespan Respite programs.
Lifespan Respite Legislative History
House Energy and Commerce Committee Report on Lifespan Respite Care Act (September 2006), click here.
The House Committee report is the only Congressional Report in the legislative history of the Lifespan Respite Care Act. It carries the force of law and elaborates on Congressional intent, especially related to who is to be served by state lifespan respite programs and how the program is to be administered at the state and federal levels.
Statements of Reps. Ferguson and Langevin in support of an amendment to the Labor/HHS/Education appropriations bill fund Lifespan Respite at $10 million in FY 08 (CR, page H8010, July 17, 2007). Click here.
Statements of Senator Warner, Clinton, Specter, and Harkin in support of an amendment to the Labor/HHS/Education appropriations bill to fund Lifespan Respite at $10 million in FY 08 (CR, page S13236, October 23, 2007). Click here.
Senator Clinton's 2005 Congressional Record Statement on the Introduction of the Lifespan Respite Care Act of 2005 (CR, page S6933, June 21, 2005). Click here.
Senator Clinton's 2003 Congressional Record Statement on the Introduction of the Lifespan Respite Care Act of 2003, S. 538 (CR, pages 3190-91, March 5, 2003). Click here.
Congressman Langevin's 2003 Congressional Record Statement on the Introduction of HR 1083. Click here.
Jill Kagan, MPH
Chair, National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003