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We envision an America where respite is readily available and easily accessible to all caregivers.
The Lifespan Respite Task Force 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 as the legislation we seek funding for the legislation and eventually in helping to determine how the law will be implemented.
| 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.
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| Working Definition: |
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 a Quality Respite Care Program: |
1) 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.
2) Respite is accessible. Respite should be easily accessible by caregivers when, how, and where it is needed.
3) Respite is affordable. Sufficient resources should be available to ensure that all caregivers have access to high quality respite services.
4) 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.
5) 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 families’ needs should be available. Culturally competent providers should be available to all families. Caregivers should be free to choose their respite providers.
6) 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.
7) 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.
8) 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.
9) 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.
10) 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. |
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Lifespan Respite Receives National Recognition
National Governor's Association Identifies Lifespan Respite:
An issue brief "State Support for Family Caregivers and Paid Home-Care Workers" was recently released by the National Governor's Association Center for Best Practices Aging Initiative and identifies Lifespan Respite as a strategy for supporting family caregivers.The report can be downloaded here.
From the National Conference of State Legislatures:
Promising Practices: Community-based Long-term Care (PDF) from the National Conference of State Legislatures web site.
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. The conference proceedings can be downloaded by clicking here.
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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.
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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www.archrespite.org/nrc.htm
www.archrespite.org/Tforce.htm
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Click here for a list of Members of the Lifespan Respite Task Force.
Congressional Letters of Support for Funding of Lifespan Respite Act (PL109-442):
Senate
House
Click here to contact
your State Respite Coalition
Click here for a copy of the Lifespan Respite Act (PL 109-442)
PL 109-442 Section by Section
Timelines for PL 109-442 Implementation
House Report for
PL 109-442
Kagan Testimony to House Subcommittee
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Join the ARCH Listerve and receive legislative updates and other timely information about respite care. Click the red box below. Enter your email address in the yellow box when it appears and click submit.
Links:
Aging and Disability Resource Centers
ARCH Fact Sheets
State Lifespan Respite Summits
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Contact your Senators and Representatives
Contact your state's Respite Coalition
Fact Sheet: Respite Cost Savings
ARCH Lifespan report - "Statewide Lifespan Respite Programs: A Study of 4 State Programs" (Aug. 2004
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PROGRAMS 