We envision an America where respite is readily available and easily accessible to all caregivers.
The Lifespan Respite Task Force, established in 2000, is a coalition of over 100 national and state organizations which serves as a working group of the ARCH National Respite Coalition to develop and promote a national respite policy. The Task Force was a major force in passing the Lifespan Respite Act of 2006 and will continue to serve to ensure full funding for the program and to help oversee program implementation. For a list of participating organizations, click here.
Goals of the Lifespan Respite Task Force:
- Universal availability of respite for all who seek it;
- Widespread acceptance that it is all right to ask for and receive help;
- Heightened awareness of caregiver needs;
- Easy access to an array of affordable respite services;
- Flexibility to meet diverse needs; and,
- Systems that meet the comprehensive needs of caregivers to locate, train, and pay for respite.
Respite care, which includes crisis care, provides temporary relief for caregivers from the ongoing responsibility of caring for an individual of any age with special needs, or who may be at risk of abuse or neglect.
Why is Respite so Important:
Respite is often the most frequently requested and needed family support service. Respite is first and foremost a preventive strategy that strengthens families, protects family health and well being, and allows individuals to remain in their own home. Respite has been shown to prevent or delay more costly out-of-home placements, reduce the risk of abuse or neglect, and to help keep all family members safe and stable.
Principles of Quality Respite Care:
- Respite is available to all families and caregivers. Respite should be available to any caregiver providing ongoing care for individuals of any age with any physical or mental disability, chronic or terminal illness, or other special need, or at risk of abuse or neglect, regardless of family income, race, gender or situation.
- Respite is accessible. Respite should be easily accessible by caregivers when, how, and where it is needed.
- Respite is affordable. Sufficient resources should be available to ensure that all caregivers have access to high quality respite services.
- Planned and emergency respite is available. Respite is also an important component of a continuum of comprehensive family support services available to caregivers not only on a planned basis, but also in emergency situations.
- Families have an array of options and can choose respite services that meet their unique needs. A wide array of respite options, including in-home and out-of-home, and a diverse pool of providers that meet familiesâ€™ needs should be available. Culturally competent providers should be available to all families. Caregivers should be free to choose their respite providers.
- Respite systems address capacity issues and ensure enough providers are available. The current supply of individuals available to provide respite is inadequate in many communities, especially respite for individuals with mental illness or severe medical conditions, or in some rural and urban areas.
- Respite systems ensure caregivers are aware of respite and know how to access respite. Adequate outreach and support services should be made available to increase caregiver awareness about available respite options and community resources.
- Respite systems empower caregivers to select, hire and train competent providers. A mechanism should be in place to support and assist caregivers in the process of selecting providers to meet their individual needs.
- Respite systems are made up of agencies and individuals committed to addressing gaps and barriers in services. Respite systems should include families, stakeholders, agencies and community-based partners.
- Respite is high quality. All available and accessible respite options should be of high quality and ensure the safety of the individual being cared for. Services are evaluated and feedback from families drives program improvements.
Lifespan Respite Legislative History
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.
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 Clintonâ€™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 Clintonâ€™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.
Lifespan Respite Receives National Recognition
The 2005 White House Conference on Aging (WHCoA) was held December 11-14, 2005 in Washington, DC, and was the fifth WHCoA in history. Like its predecessors, its purpose was to make recommendations to the President and Congress to help guide national aging policies for the next ten years and beyond. The 2005 WHCoA which had as its theme, "The Booming Dynamics of Aging, From Awareness to Action," focused on the aging of today and tomorrow, including 78 million baby boomers who began turning 60 in January, 2006. Jill Kagan of the ARCH National Respite Coalition was privileged to serve as an at-large delegate to the conference. The final conference report included a recommendation to Congress to enact the Lifespan Respite Care Act which was signed into law in December of 2006. For the Executive Summary of the Final Report, download here.
National Governor's Association Identifies Lifespan Respite: An issue brief "State Support for Family Caregivers and Paid Home-Care Workers" by the National Governor's Association Center for Best Practices Aging Initiative identified Lifespan Respite as a strategy for supporting family caregivers. The report can be downloaded here.
From the National Conference of State Legislatures: The issue brief, Promising Practices: Community-based Long-term Care (2001), from the National Conference of State Legislatures, described the Nebraska Lifespan Respite Program as a home and community-based strategy that states could emulate. For a copy of the issue brief, download here.
National Health Council Family Conference Proceedings: On June 26, 2002, the National Health Council and the National Quality Caregiving Coalition, of the Rosalyn Carter Institute for Human Development (RCI) held a two-day, National Family Caregiving Conference. The two-day conference, which attracted more than 200 participants, covered a wide range of topics and issues related to family caregiving. The Lifespan Bill was featured in a keynote by Senator Hillary Clinton and was supported by Mrs. Carter in her closing remarks. (No longer available.)
Jill Kagan, MPH
Chair, National Respite Coalition and
Director of the ARCH NRN Resource Center
4016 Oxford St.
Annandale, VA 22003