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Action Center:   
Reauthorization of the Lifespan Respite Act


The Policy Division of the
ARCH National Respite Network


Stay tuned for Lifespan Respite Reauthorization updates! 

Lifespan Respite Reauthorization Act

On October 26, 2011, Reps. Langevin (D-RI) and McMorris Rodgers (R-WA) introduced the Lifespan Respite Care Reauthorization Act of 2011 (HR 3266) in the US House of Representatives.  The bill was referred to the House Energy and Commerce Committee but no action was taken. The bill will have to be reintroduced at an appropriate time. For a summary of the bill, click here. Congress continues to appropriate funds for the program. 

Video Statements of House Champions presented at the 2011 National Lifespan Respite Conference in Arizona on November 2, 2011 in support of introduction of HR 3266.

Representative Jim Langevin (D-RI) Video Link
Representative Catherine McMorris Rodgers (R-WA) Video Link


FACTS and Talking Points for Respite

2012 Respite Fact of the Year

NEW! Researchers at the University of Pennsylvania studied the records of over 28,000 children with autism ages 5 to 21 who were enrolled in Medicaid in 2004.  They concluded that for every $1,000 states spent on respite services in the previous 60 days, there was an 8 percent drop in the odds of hospitalization.

David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, A;
Megan McCarthy, MA; Steven C. Marcus, PhD.  The Interplay of Outpatient  Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders. Arch Pediatr Adolesc Med. 2012;166(1):68-73. doi:10.1001/archpediatrics.2011.714
  • When it comes to their own situation, family caregivers are most concerned about taking care of their own personal health (84%), not having enough respite care (83%), and meeting monthly financial needs (77%).  To see more survey results, see the NFCA/Allsup Family Caregiver Survey, 2011. 
  • From 2011 AARP Update, State-by-State Table on the Number of Caregivers and the Economic Value of Caregiving, 2009, click here.

    Source: 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.
  •  Updated Respite and Caregiving Fact Sheet, 2012,  Click here. 
  • Updated 2012  Cost-Savings and Benefits Due to Respite Fact Sheet 2012,Click here. 
  •  New! Fact Sheet: Respite for Children, 2012, Click here.
  • Making the Case: Saving Your State's Caregiver Support Programs --Talking Points for Advocates, Administrators, Providers and Caregivers, Family Caregiver Alliance, December 2009, click here.

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 world’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 Reauthorization Act
(HR 3266):

Use of Funds:
The Act authorizes competitive grants to eligible state agencie 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 involved as 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.

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:
$2.5 m in FY 2012; $5 m in FY 13; $10 m in FY 14; $15 m in FY; $17.5 in FY 16 

National Resource Center:
Establishes National Resource Center on Lifespan Respite Care

Click here for a copy of the Legislation 
Click here for a Section-by-Section Summary of HR 3266 


Jill Kagan, MPH
Chair, National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
This e-mail address is being protected from spambots. You need JavaScript enabled to view it


Contact Congress


To contact your US House member, visit here.

To contact your US Senator, visit here

Fact Sheet: Benefits and Cost-Savings of Respite. Click here.

112th Congress

National Respite Coalition delivers two official statements to Senate HELP Committee Staff on OAA and Lifespan Respite Reauthorization (signed by 35 national organizations)


ObamaTransition Team Brief:

Presented to President-elect Obama's Transition Team (Dec. 2008). Click here.

NRC Testifies
before the House Veteran's Affairs Health Subcommittee on Meeting the Needs of Family Caregivers of Veterans. (June 4, 2009).
Click here.