The Lifespan Respite Care Program was authorized by Congress in 2006 under Title XXIX of the Public Health Service Act (42 U.S.C 201). Lifespan Respite Care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs. Such programs reduce duplication of effort and assist in the development of respite care infrastructures at the state and local levels.
Lifespan Respite Care programs work to improve the delivery and quality of respite services available through the following objectives:
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Expand and enhance respite services in the states;
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Improve coordination and dissemination of respite services;
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Streamline access to programs;
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Fill gaps in service where necessary; and
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Improve the overall quality of the respite services currently available.
Since 2009, Congress has appropriated approximately $2.5 million per year to implement Lifespan Respite Programs. As of 2017, competitive grants of up to $200,000 each were awarded to eligible agencies in 37 states and the District of Columbia.
Eligible agencies are those administering the state’s program under the Older Americans Act of 1965 or Title XIX of the Social Security Act (Medicaid), or those designated by a Governor to administer the state’s program under this title. The eligible state agency must be an Aging and Disability Resource Center and work in collaboration with a public or private nonprofit statewide respite care coalition or organization.
With these initial three-year grants, states have developed or built upon respite infrastructures through a variety of approaches designed to enhance or improve access to and receipt of respite services. Grantee activities include:
- Environmental scanning to understand available respite programs and family caregiver needs;
- Marketing and outreach campaigns to educate family caregivers about respite and how to access services;
- Training of volunteer and paid respite providers to increase the availability of respite services;
- Partnering with communities of faith to develop respite programs;
- Developing or enhancing statewide databases of respite care programs, services, and information to improve access for family caregivers; and
- Developing and implementing person-centered respite service options, such as vouchers.
ACL has since funded states to build upon and expand the efforts started during their previous three years of work. Grantees are focusing on more fully integrating Lifespan Respite Care Programs into state systems of long-term services and supports. The new grants require states to provide gap-filling respite services to family caregivers, and to work with ACL to develop program performance and outcome measures.
Lifespan Respite Care Program Grantees
- 2019 Grantees
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Advancing States Non-Competing: $3,475,720
- Arkansas
- Alabama
- Arizona
- Colorado
- Idaho
- Massachusetts
- Montana
- Nevada
- New York
- North Carolina
- Oklahoma
- Rhode Island
- South Carolina
- Tennessee
- Virginia
- Washington
Additional Supplemental Funding for 16 2019 Advancing States Lifespan Respite System Grantees: $269,072
- 2018 Grantees
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New Advancing State Grants: $783,134
- Arkansas
- Massachusetts
- Montana
- Virginia
Additional Supplemental Funding for 12 2017 Advancing States Lifespan Respite System Grantees: $261,590
Supplemental Funding for Technical Assistance Center: $18,215
ARCH was awarded additional funding to:- develop and host a webinar series on effective respite messaging strategies. Potential webinar speakers include public relations or marketing experts to provide technical assistance in developing effective public awareness campaigns.
- Host an additional Lifespan Respite Summit with current Lifespan Respite grantee
- Update and streamline the Lifespan Respite Grantee and Partners website and related webpages to ensure that ARCH resources are more easily accessible.
- 2017 Grantees
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New State Grants
- North Dakota
- South Dakota
Advancing States Lifespan Respite System Grants
- Alabama
- Arizona
- Colorado
- Idaho
- Nevada
- New York
- North Carolina
- Oklahoma
- Rhode Island
- South Carolina
- Tennessee
- Washington
- 2016 Grantees
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New State Grants
- Maryland
- Mississippi
Expansion Grants
- Colorado
- Delaware
- Massachusetts
- Montana
- North Carolina
- Washington
- 2015 Grantees
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New State Grants
- Florida
- 2014 Grantees
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New State Grants
- Arkansas
Integration and Sustainability Grants
- Alabama
- Colorado
- Delaware
- Iowa
- Massachusetts
- Montana
- Nebraska
- Nevada
- New York
- North Carolina
- Rhode Island
- South Carolina
- Tennessee
- Texas
- Virginia
- Washington
- 2013 Grantees
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New State Grants
- Idaho
Integration and Sustainability Grants
- Delaware
- District of Columbia
- Massachusetts
- Oklahoma
- South Carolina
- Texas
- Washington
- Wisconsin
- 2012 Grantees
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New State Grant
- Iowa
Expansion Grants
- Massachusetts
- Virginia
Integration and Sustainability Grants
- Alabama
- Arizona
- Nevada
- North Carolina
- Rhode Island
- South Carolina
- Texas
- 2011 Grantees
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New State Grants
- Colorado
- Hawaii
- Montana
- New Jersey
- Ohio
- Virginia
Expansion Grants
- Delaware
- District of Columbia
- North Carolina
- Nevada
- Rhode Island
- South Carolina
- Tennessee
- Texas
- 2010 Grantees
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New State Grants
- Delaware
- Kansas
- Louisiana
- Massachusetts
- Minnesota
- Nebraska
- New York
- Oklahoma
- Pennsylvania
- Utah
- Washington
- Wisconsin
- 2009 Grantees
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New State Grants
- Alabama
- Arizona
- Connecticut
- District of Columbia
- Illinois
- Nevada
- New Hampshire
- North Carolina
- Rhode Island
- South Carolina
- Tennessee
- Texas
Technical Assistance
Technical assistance (TA) is a key component of effective program development. Since implementation began in 2009, ACL has funded the ARCH National Respite Network and Resource Center to provide TA to the Lifespan Respite Program grantees and the field.
ARCH’s current TA activities focus on assisting states in the development of sustainable, integrated, and high-quality respite programs across the lifespan; supporting the development of a framework to measure program performance and outcomes; and collecting, synthesizing, disseminating, and stimulating research in the field of respite and family caregiver support. For more information, visit the ARCH National Respite Network and Resource Center.
Lifespan Respite Care Program—Reauthorization
The Lifespan Respite Care Act is due to be reauthorized. From January 6 through March 31, 2011, AoA solicited input regarding the reauthorization from interested individuals and organizations. Find a summary of the input that was received (PDF, 13KB).
Stories of Respite
Since her husband died a few years ago, Sue is now the primary caregiver for her 8-year-old godson David, who has autism. Every summer, David attends a day camp for children with disabilities. The caring staff pays close attention to his needs, and he gets to join other children with disabilities in fun activities that develop his physical, emotional, and social skills. “When David returns to school each fall after an eventful summer at camp, his teachers are astounded at the changes and progress he has made,” Sue says. His camp participation, through Tennessee's respite program, offers Sue much-needed respite time to visit with friends and continue working her part-time job during the summer.
"During the week, I would not be able to work if we didn’t have caregivers to pick (my mother) up and drop her off at daycare and access to daycare. If we did not have our current set-up, my mom would be in assisted living/memory care 24/7. She benefits by having the freedom to live in a home with family and spend her days busy at daycare with adults that are not all memory impaired. I feel the mental stimulation is far more than what she would receive staying at home or being in a facility. We are grateful for the setup we have so we can have my mom at home.” ― Participant in Colorado's lifespan respite program
"Moving my mom in to live with us was a big move and adjustment. Having respite helped tremendously. Without that support, we could not have kept her in our home where I believe she is the happiest." ― Participant in Colorado's lifespan respite program
The quotes below are from participants in South Carolina's respite program:
It is difficult finding the right people and training them to take care of kids like my daughter and that hinders us from taking needed time off to, at least, catch a breather at times. Respite funding was heaven sent, because it helped us to offset some of the expenses to take care of our child and provided us with a much needed break. My wife and I enjoyed our trip to the beach. We needed it. We felt a little guilty, but we knew our daughter was in good hands.
― Antoine
Respite funding let me pay for someone to sit with my wife so I could fish and hunt. I never thought at 54 years old I would be taking care my wife full-time, but she is worth it. After her stroke, they said she would never talk or walk. She is a miracle to me. We have been through a lot but we are still together and love each other. We used to fish together and she always caught more than me. We will fish together again soon.
― Donald (right)
I have a beautiful girl named Hannah with Down Syndrome. I love my daughter and taking care of her. But a life with a child with special needs presents constant challenges and stress. Respite funds have allowed me to have breaks so that I can go grocery shopping, research Hannah’s condition and educate myself on ways I can help her, and rest so I can stay strong for Hannah and the baby we are currently expecting.
― Maria