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

2. 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
ARCH National Respite Network Website: archrespite.org

3. Respite
Benefits
Access
Barriers
Respite

4. Lifespan Respite … a system of services
Jill Kagan
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

5. Federal Lifespan Respite Care Program
Jill Kagan
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

6. Lifespan Respite State Grants Awarded as of 2018
Jill Kagan
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 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

7. Lifespan Respite Built on Collaboration
Jill Kagan
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

8. Evolving Focus of Grantee Activities
Jill Kagan
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

10. 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 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

11. 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

12. Jill Kagan jkagan@archrespite.org
7/10/2019
For More Information
Jill Kagan
Program Director
ARCH National Respite Network
and Resource Center
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 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