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National Respite Coalition

The Policy Division of the ARCH National Respite Network
national respite coalition

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.

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.

FACTS and Talking Points for Respite and Caregiving

National Caregiver Fact

A new RAND Corporation study estimates the value of informal caregiving in the US by friends and relatives of the aging at $522 billion a year. Replacing that care with unskilled paid care at minimum wage would cost $221 billion, while replacing it with skilled nursing care would cost $642 billion annually.

The study improves on earlier estimates about the value of informal caregiving by making use of the 2011 and 2012 American Time Use Survey, a new and unique database, to provide up-to-date cost estimates on informal caregiving.

Source: The Opportunity Costs of Informal Elder-Care in the United States: New Estimates from the American Time Use Survey by A.V. Chari, John Engberg, Kristin Ray, Ateev Mehrotra, Health Services Research, 2014


National Caregiver Fact

Four in ten adults in the U.S. are caring for an adult or child with significant health issues, up from 30% in 2010.

Caring for a loved one is an activity that cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce. Caregivers are highly engaged in the pursuit of health information, support, care, and advice, both online and offline, and do many health-related activities at higher levels than non-caregivers.  39% of U.S. adults are caregivers and many navigate health care with the help of technology.

Source: PEW Research Center, June 20, 2013

Full Report

Respite Cost Savings Fact

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, MA; 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 

Full Article

2011 National Family Caregiver Association Survey

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. 


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.

Full AARP Brief, click here.


National Respite Coalition Fact Sheets

  • Respite and Caregiving Fact Sheet, 2012, Click here.
  • Cost-Savings and Benefits Due to Respite Fact Sheet 2012, Click here.
  • Respite for Children, 2012, 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 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.

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:

(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

GAO Report:

A GAO report on Lifespan Respite Programs is required by 2011.
Click here for a copy of the Act.

President Bush signs Lifespan Respite Care 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.

Floor 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.

Floor 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
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

NRC Legislative 
Alerts and Updates

Twenty members of the US House sign letter to appropriators requesting $5 million for Lifespan Respite in FY 2016.

Congressional Letter

NRC Legislative Alert for FY 16 Lifespan Respite Funding, click here.

Forty national organizations endorse Lifespan Respite Program Reauthorization in 113th Congress.

Letter of Support

NRC's written testimony to Senate Labor / HHS / Education Appropriations Subcommittee in support of FY 2016 Lifespan Respite Funding. Click here. Similar testimony submitted to the House Subommittee. 

National Organization Letters in Support of Lifespan Respite, National Family Caregiver Support Program, and Family Support funding in FY 2016.

Senate Letter
House Letter

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

FRIENDS Fact Sheet #14
Respite and Crisis Care
Click Here.  

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