Lifespan Respite Care Program 51st Annual Autism Society National Conference July 9–11, 2019

Jill Kagan jkagan@archrespite.org 7/10/2019 Respite is… Planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult. Lifespan Respite Care Act definition PL 109-442 ARCH National Respite Network Website: archrespite.org

Respite Benefits Access Barriers Respite

Lifespan Respite … a system of services Jill Kagan jkagan@archrespite.org 7/10/2019 Lifespan Respite … a system of services Lifespan Respite Definition: Coordinated SYSTEMS of accessible, community-based respite services for all family caregivers regardless of age or special need. Grew from state initiatives in OR, OK, NE and WI Federal Lifespan Respite program is unique from other federal caregiver initiatives in that is we designed to deal with all of these barriers by building coordinate respite systems that serve all family caregivers across the age and disability spectrum. ARCH National Respite Network Website: archrespite.org

Federal Lifespan Respite Care Program Jill Kagan jkagan@archrespite.org 7/10/2019 Federal Lifespan Respite Care Program U.S. Administration for Community Living administers competitive state grants for required uses of funds: Development or enhancement of State and local Lifespan Respite systems Planned or emergency respite for all ages Training and recruitment of providers/volunteers Provision of information to caregivers about respite services, and assistance in gaining access States are required to engage in activities that address all four of these mandated purposes, but there is still a lot of flexibility in how states design programs. There are no requirements to spend a specific percentage on each of these activities, so while states are supposed to address all of these areas, they have flexibility to focus their activities on those requirements where they have demonstrated need. ARCH National Respite Network Website: archrespite.org

Lifespan Respite State Grants Awarded as of 2018 Jill Kagan jkagan@archrespite.org 7/10/2019 Lifespan Respite State Grants Awarded as of 2018 WA ME MT ND VT AK MN OR NH ID WI SD MA NY MI WY RI IA PA CT NE OH NJ NV UT IL IN DE CO VA CA KS WV MD MO KY DC TN NC AZ NM OK AR SC AL GA American Samoa HI MS Guam N. Mariana Islands TX LA Puerto Rico FL Virgin Islands 37 state and the District of Columbia have received al least one basic infrastructure building grant since the program was first funded in 2009. Many of the states. Like ID. have gone on to receive additional grants to help them deliver respite services. Now most states are also working on long-term sustainability plans, that might include embedding grant activities into the states long term services and supports systems. Lifespan Respite State Grantees Expansion Grantees Integration and Sustainability Grantees Advancing States Courtesy of Administration for Community Living ARCH National Respite Network Website: archrespite.org

Lifespan Respite Built on Collaboration Jill Kagan jkagan@archrespite.org 7/10/2019 Lifespan Respite Built on Collaboration State Lead Agency ADRC/No Wrong Door State Respite Coalition State Lifespan Respite System The lead agency is required by law to work with at least one ADRC in the state and to enter into a Memorandum of Understanding with a state respite coalition. ARCH National Respite Network Website: archrespite.org

Evolving Focus of Grantee Activities Jill Kagan jkagan@archrespite.org 7/10/2019 Evolving Focus of Grantee Activities Building a Statewide Infrastructure Service Delivery Systems Integration and Long-Term Sustainability ARCH National Respite Network Website: archrespite.org

Lifespan Respite Care Program Reauthorization Act of 2019 House bill (H.R. 2035) introduced by Rep. Jim Langevin (D-RI) and Rep. Cathy McMorris Rodgers (R-WA) 11 Cosponsors Authorizes $200 million over five years (FY 2020-FY 2024) Health Subcommittee of House Energy and Commerce Committee held hearing on June 25 Senate bill (S. 995) introduced by Senator Susan Collins (R-ME) and Senator Tammy Baldwin (D-WI) Bill endorsed by 48 national organizations

Lifespan Respite Appropriations House-passed Labor-HHS-Education bill includes $10 million for Lifespan Respite in FY 2020 Advocates urging Senate to include $20 million

Jill Kagan jkagan@archrespite.org 7/10/2019 For More Information Jill Kagan Program Director 703.256.2084 jkagan@archrespite.org ARCH National Respite Network and Resource Center http://www.archrespite.org Lifespan Respite Technical Assistance Center This project was supported, in part by grant number 90LT0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy. ARCH National Respite Network Website: archrespite.org