Lifespan Respite: Who, What, Why, Where and How?

1. Lifespan Respite:Who, What, Why, Where and How? ARCH National Respite Network and Resource Center

2. Presenter Jill Kagan, MPH Program Director ARCH National Respite Network and Resource Center 703-256-2084 jbkagan@verizon.net ARCH National Respite Network and Resource Center

3. Family Caregiving in the US • 65.7 million unpaid family caregivers • Provide 80% of long-term care in the US. • Valued at over $375 billion a year in uncompensated care, more than was spent on Medicaid in 2007. ARCH National Respite Network and Resource Center

4. Family Caregiving is Lifespan! • Majority of family caregivers caring for someone under age 75 (56%). • 28% of family caregivers caring for someone between the ages of 50-75. • 28% are caring for someone under age 50, including children Source: Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, 2009. ARCH National Respite Network and Resource Center

5. Family Caregiving in [State} • In 2007, at anytime during the year, nearly 1.4 million family caregivers were providing care in [State]. • The value of their caregiving is estimated at $[ ] billion annually. • But they cannot do it alone! Source: Gibson, MJ and Houser, A., (2008). Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update, AARP Public Policy Institute Issue Brief Insight on the Issues, November, 2008. (Washington, DC: AARP) ARCH National Respite Network and Resource Center

6. What is Respite? • For family caregivers who provide ongoing care to someone with a chronic or disabling condition or for a family facing undue hardship or crisis, respite means: … planned or emergency care provided to a child or adult with a special need in order to provide temporary relief to the family caregiver of that child or adult. Lifespan Respite Care Act definition PL 109-442 ARCH National Respite Network and Resource Center

7. Benefits of Respite • Improves family caregiver physical and emotional health; • Improves overall family well-being and stability; • Improves marriages, sibling and other family relationships; • Reduces hospital costs and helps avoid or delay more costly foster care, nursing home or other out-of-home placements; • Gives care recipient a break, too!

8. What is Lifespan Respite??

9. Lifespan Respite …not just care or a service, but….. • Lifespan Respite Definition: Coordinated SYSTEMS of accessible, community-based respite services for all family caregivers regardless of age or special need. • Original Lifespan Respite Programs for Best Practice: OR, OK, WI, and NE designed to improve respite access • Twenty-four (24) New Federal Grantees

10. Why Do We Need Lifespan Respite Systems? ARCH National Respite Network and Resource Center

11. Respite: Too Little, Too Late • 89% of family caregivers (those 65 million I mentioned earlier) do not receive respite. • Survey did not ask these families why they do not receive respite, but we know from research and experience what the barriers are. ARCH National Respite Network and Resource Center

12. Barriers to Respite • Confusing and Restrictive Eligibility Criteria • Affordability Issues • Limited Providers • Reluctance to identify as caregiver or ask for help • Bureaucratic Maze of Funding Streams and Services ARCH National Respite Network and Resource Center

13. Medicaid Waivers New Health Care Reform and VA Provisions National Family Caregiver Support Program Block Grants (TANF, Maternal and Child Health, Social Services, Children’s Mental Health) Federal Categorical Funding Streams, such as CAPTA, Family Support, Alzheimer’s Demos State Respite or Family Caregiver Support Programs Building Blocks for Lifespan Respite ARCH National Respite Network and Resource Center

14. Lifespan Respite is like a Quilt • It weaves together these extremely important, but fragmented funding streams, disparate and duplicative programs, and silos to form a seamless system that make barriers invisible to families. ARCH National Respite Network and Resource Center

15. Characteristics of Lifespan Respite Programs • Identify and coordinate existing respite resources/funding/programs at state level • Identify service gaps to help create and monitor new respite services • Connect families to respite services, providers, and payment resources • Recruit and train respite providers • Promote public awareness about respite ARCH National Respite Network and Resource Center

16. Best Practices in State Lifespan Respite Systems ARCH National Respite Network and Resource Center

17. Oregon’s Lifespan Program • State Agency: In 1997, Oregon Department of Human Services (DHS) charged by state law to develop statewide respite coordination • Relies Heavily on Local Structures to Build Resources: DHS worked directly with 22 local respite networks (LRNs) serving all 36 counties in Oregon • Diverse State Advisory Council brings Lifespan Perspective ARCH National Respite Network and Resource Center

18. Nebraska’s Lifespan Program • Nebraska Lifespan Respite Services Program created by legislation in 1999 • Lifespan Respite Network • Also has Lifespan Respite Subsidy (respite payments up to 312% of poverty for families who do not qualify for any existing funding stream) • State Agency: Implemented by Nebraska Department of Health & Human Services (DHHS) ARCH National Respite Network and Resource Center 18

19. NE Respite Network More Regional than Local (like in OR) • Regional Structure: HHSS contracts with six (6) regional entities to form the Lifespan Network. ARCH National Respite Network and Resource Center

20. Oklahoma’s Lifespan Program • Oklahoma Respite Resource Network(ORRN) is a statewide partnership of public and private agencies • Partnering State Agencies include: developmental disabilities, mental health, aging, maternal and child health and others ARCH National Respite Network and Resource Center

21. Oklahoma Structure • No local/regional structure • ORRN relies on a statewide resource and referral system (OASIS) through an 800 toll-free number and the web to link families to the program, to respite providers and to training opportunities. ARCH National Respite Network and Resource Center

22. Oklahoma’s Lifespan Program:Consumer-Directed • Family Caregivers eligible for respite vouchers of $200-400 every three months as long as funds are available. • Encouraged to choose own providers from community/family support network. • By using OASIS, caregivers receive information on other services and supports besides respite. ARCH National Respite Network and Resource Center

23. Moving to National Scale • Lifespan Respite Law Signed in 2006 • Funded for the First Time in 2009 at $2.5 million and again in 2010 • Administered by the US Administration on Aging ARCH National Respite Network and Resource Center

24. Federal Lifespan Respite Care Program US Administration on Aging administers competitive state grants for these mandatory uses of the funds: • Development or enhancement of State and local Lifespan Respite systems • Provision of planned or emergency respite for all ages ARCH National Respite Network and Resource Center

25. Lifespan Respite Care Program (con’t) • Training and recruitment of providers/volunteers • Provision of information to caregivers about available respite and support services, and assistance in gaining access to such services ARCH National Respite Network and Resource Center

26. State Lead Agency • Eligible State Lead Entities • State Units on Aging • State Medicaid Agencies • Other State Agencies In concert with… • Aging and Disability Resource Centers • State Lifespan Respite Coalition ARCH National Respite Network and Resource Center

27. Mandated Collaboration: What does it Mean for Your State? • ADRC and State Respite Coalitions must be a partner in program implementation. • The State’s Application must include: • Memorandum of agreement regarding the Jointresponsibilityfor the eligible State agency's Lifespan Respite program between the eligible State agency and a public or private nonprofit statewide respite coalition or organization. ARCH National Respite Network and Resource Center

28. State Match Requirement 25% Match Required Can be Cash or In-Kind

29. Lifespan Respite Programs Must… • Advance State’s Ability to Meet Respite Needs • Serve all Population/Disability Groups, especially gap populations • Coordinate With, and on Behalf of, Existing Respite Programs and Infrastructures • Have a Consumer Focus • Demonstrate Stakeholder Collaboration

30. Current Status ARCH National Respite Network and Resource Center

31. Grantee Activities:  Examples ARCH National Respite Network and Resource Center

32. South Carolina: Expanding Volunteer Training and Provider Opportunities using faith-based and Senior Companion programs; Tennessee using University-based volunteer training program Arizona: Developing partnership with Adult Protective Services to provide respite to high risk families; Illinois: set aside grant funds to pay for some emergency respite North Carolina: “Just One More”: 100 NC counties will be challenged to develop at least one new respite service ARCH National Respite Network and Resource Center

33. New Grantees: Roles of State Respite Coalitions and ADRCs ARCH National Respite Network and Resource Center

34. What are these entities and what do they do? ARCH National Respite Network and Resource Center

35. Role of State Agencies All must engage in Program Administration/Implementation/ Oversight/ Leadership. May undertake themselves to Coordinate Respite Information Coordinate Statewide Respite Databases or Contract to Local Entities To Complete Required Tasks 35 ARCH National Respite Network and Resource Center

36. State Respite Coalition • No definition of coalition in law or PA • No standardized requirements for structure or mission • Most respite coalitions predate Lifespan Respite; others developed because of it. • Respite Coalitions have a history of advocacy and networking; some progressed to service/voucher delivery and training. • As far as Lifespan Respite is concerned, coalition’s role and activities are completely determined by decisions jointly made between state lead agency and the coalition. ARCH National Respite Network and Resource Center

37. State Respite Coalition Examples in Grantee States • South Carolina Respite Coalition: • Co-facilitate State Advisory Committee • Pull together information on funding streams, respite barriers, identifying respite gaps. • North Carolina: • Serve on State Advisory Board • Responsible for New Training and Program Material Development (e.g. cultural diversity, volunteer respite guide) ARCH National Respite Network and Resource Center

38. State Respite Coalition Examples in Grantee States • IllinoisRespite Coalition will: • Establish 800 number • Responsible for provider training • Texas Respite Coalition: • Distribute products • Identify ongoing barriers and best practices • Attract media attention and raise awareness ARCH National Respite Network and Resource Center

39. Aging and Disability Resource Center • Serve as “one stop shops” or "no wrong door” entry into long-term supports and services system for older adults and people with disabilities; • Over 200 ADRCs funded in 49 states and territories; • Jointly funded by CMS and AoA; • Lifespan Respite Law has a specific definition of ADRC, but the law does not mandate what the specific role of the ADRC should be in program implementation. ARCH National Respite Network and Resource Center

40. State Examples of ADRC Role • Connecticut: ADRC will be single point of entry; CT Lifespan Respite Coalition as “respite portal.” • South Carolina: Bridging Family to Family Health Centers with ADRCs through electronic resources. • Tennessee: ADRC and Coalition working side-by-side to form “no-wrong door” approach. • Alabama: Alabama Connect, virtual ADRC, will house Alabama Lifespan Respite Network website, but Respite Network will be point of contact. • Texas: With state funding, ADRCs given priority to receive grants to serve as Lifespan Respite local points of entry ARCH National Respite Network and Resource Center

41. State Role: Getting Ready to Implement Lifespan Respite ARCH National Respite Network and Resource Center

42. FY 2011 Timeline ARCH National Respite Network and Resource Center

43. Lessons From First Round of Federal Funding ARCH National Respite Network and Resource Center

44. Questions to Consider ARCH National Respite Network and Resource Center

45. How do we build or strengthen our State Respite Coalition? What role will it play? Respite Coalitions Can: • Advocate with a Respite Focus • Conduct Program Oversight • Provide Guidance and Expertise to Lead Agency • Serve as Respite “Portal” for Access to Lifespan System • Develop and Offer Respite Recruitment/Training • Network ARCH National Respite Network and Resource Center

46. Outreach, public awareness and information dissemination Serve on State Advisory Teams or Task Forces Expand Caregiver Training Embed Respite Hotlines What will be the role of the ADRC? ARCH National Respite Network and Resource Center

47. What are the short and long term goals we need to reach to become a Lifespan Respite state? • Develop a Timeline to Prepare for Funding and Application Writing • Develop relationships, enhance collaborations between ADRCs, Respite Coalition, Governor’s office, State and Local Agencies • Research and Identify Current State Respite Needs/Barriers/Funding Sources • Collaborate to Design Your State’s Program – What should it look like?? ARCH National Respite Network and Resource Center

48. For More Information • ARCH National Respite Network and Resource Center http://www.archrespite.org/ Caregiver Programs & Lifespan Respite: Technical Assistance Centers This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal government should not be assumed. ARCH National Respite Network and Resource Center