Ten Years of the National Family Caregiver Support Program: Looking Back & Looking Forward

1. Ten Years of the National Family Caregiver Support Program: Looking Back & Looking Forward Illinois Governor’s Conference on Aging December 8, 2011 Chicago, IL

2. The National Family Caregiver Support Program

3. The National Family Caregiver Support Program (NFCSP) Created in the 2000 Reauthorization of the Older Americans Act Focus on Caregiver vs. Care Recipient General Provisions of Title III Apply Services delivery system Organization and structure (SUA, AAA, LSPs) Intrastate Funding Formula

4. The NFCSP – 10 Years of Growth Gradual increases in funding $125 million initial appropriation $154 million for FY 2010 $192.2 million for FY 2012 (requested) Projects of National Significance & Innovation New approaches Effectiveness of programs Quality and improvement through evaluation, training, TA and research 2006 Amendments Care Recipients with Alzheimer’s Disease of any age Lowered age for grandparents/other relatives to 55 Inclusion of older caregivers (55+) of individuals with disabilities (18-59)

5. NFCSP 10th Anniversary November 17, 2010 – 10th Anniversary Celebration Year of the Family Caregiver www.celebratingfamilycaregivers.org Calendar National, State, Local Events Tools, resources Video Testimonials

6. Program Impact Who Do We Serve? 675,000 caregivers 1/3 work full time Primarily Women (73%) Elderly themselves 54% age 60+ 22% age 75+ 17% live in rural areas Grandparents 81% female 84% age 60-74 What They Tell Us? 84% receive respite 45% said respite was most helpful 75% reported less stress 85% reported caregiving was easier 95% reported service quality as good to excellent

10. * IL ranks 47th out of 53 in Respite Expenditures/Unit

11. * IL ranks 46th out of 53 in Respite Units/Client

14. FY 2009 – IL COP Gender, Race & Rural • Gender: • 70% Female, • 20% Male and • 10% Gender Missing • Race: • 75% White, not Hispanic, • 10% Black/African American; • 2% White, Hispanic; • 1% Two or More Races and • 12% Race Missing • 24% Rural

16. *IL ranks 1st of 53 in Counseling Units and 2nd of 53 in Counseling Clients

18. *IL ranks 1st of 53 in Respite Units/Client

20. FY 2009 – IL GRG Age, Gender, Race & Rural • Age: • 60% Age 55-74 • 15% Age 75-84 • 5% Age 85+ • 20% Age Missing • Gender: • 70% Female, • 20% Male and • 10% Gender Missing • Race: • 75% White, not Hispanic • 10% Black/African American • 2% White, Hispanic • 1% Two or More Races and • 12% Race Missing • 24% Rural

21. Looking Ahead:National Family Caregiver Support Program Vice President’s Middle Class Task Force – Caregiver Initiative Focuses on Specific Caregiver Needs Integrates Caregiver Supports with other HCBS FY 12 Budget Request NFCSP (III E) - $192.2 million Title VI C - $8.388 million ADSSP - $11.46 million Lifespan Respite - $10 million

22. Looking Ahead:National Family Caregiver Support Program OAA Reauthorization http://www.aoa.gov/AoARoot/AoA_Programs/OAA/Reauthorization/docs/OAAreauth_summaries_stakehldrs.pdf “From that input, AoA developed the following key principles: 1. NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM Add "parent caregiver" to the National Family Caregiver Support Program (subject to the 10% cap), consolidate and clarify program definitions and priorities, and revise and consolidate the authorization of appropriations. This will provide much needed services to older individuals providing care to their adult children (ages 19 to 59), and responds to Congressional intent.”

23. Looking Ahead:Supporting Family Caregivers Health Care Reform Provisions Incentives to states to increase access to Medicaid HCBS Training for family and home care workers Expand access to care coordination and transitional care services Evidence-based interventions REACH, STAR-C and others (many with initial funding via ADSSP grants)

24. Looking Ahead:Supporting Family Caregivers Title III-E Program Evaluation Evaluation design contract awarded to the Lewin Group in FY 2008 Building a logic model to assess outcomes on program participants & a process evaluation Implementation phase will follow at SUA, AAA, LSP and individual client levels Research Brief Number 5 Issued September 2011 focuses on the NFCSP; encouraged to review this data for use in program management

25. Looking Ahead:Supporting Family Caregivers ASPE / AoA Collaboration on Comparative Effectiveness Research for Assistive Technologies to support caregivers ASPE contracted with Lewin to look at the research and study real life situations at the AAA level, where Assistive Technologies are being used and promoted as a way of reducing caregiver burden and injury

26. Looking Ahead:Supporting Family Caregivers Lifespan Respite Act Authorized by Congress in 2006 Due to be Reauthorized in 2012 Funded in 2009, 2010 & 2011 at $2.5 Million President’s FY 12 Request: $10 Million Competitive Grant Process 29 States and DC funded between 2009 & 2011 Up to $200,000 for three year projects TA Activities – ARCH National Respite Network & Resource Center Expansion Grants – 7 states and DC in 2011

27. Looking Ahead:Supporting Family Caregivers Resource Centers 1. Technical Assistance Centers for Family Caregiver Support Programs Grantee: Family Caregiver Alliance; Sub: ARCH National Respite Network & Resource Center Contact: Family Caregiver Alliance 1-800-445-8106; ARCH Respite 1-703-256-2084 Website: http://www.caregiver.org or http://www.archrespite.org

28. Looking Ahead:Supporting Family Caregivers Resource Centers 2. Alzheimer’s Technical Assistance Resource Center Grantee: Research Triangle Institute Contact: http://www.adrc-tae.org/tiki-index.php?page=LewinTALeads Website: http://www.adrc-tae.org/tiki-index.php?page=AboutADSSP Summary: This resource center supports grantees & others as they implement evidence-based interventions and innovative practices designed to empower and assist caregivers of persons with Alzheimer's disease and related disorders.

29. Looking Ahead:Supporting Family Caregivers Resource Centers 3. National Resource Center on Lesbian, Gay, Bisexual and Transgender (LGBT) Aging Grantee: Services & Advocacy for GLBT Elders (SAGE) Contact: info@lgbtagingcenter.org or 212-741-2247 Website: http://www.lgbtagingcenter.org/ Summary: This resource center is designed to educate mainstream aging services organizations about the existence and special needs of LGBT elders, sensitize LGBT organizations to the existence and special needs of older adults, and educate LGBT individuals about the importance of planning ahead for future long-term care needs.

31. Contact Information U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES - ADMINISTRATION ON AGING, Regions V & VII Amy Wiatr-Rodriguez, Aging Services Program Specialist amy.wiatr@aoa.hhs.gov 312.886.8536 www.aoa.gov

32. NFSCP Recent Accomplishments & Future Direction State of Illinois

33. IllinoisAccomplishments # of Caregivers Served in FY 2010 Counseling/Support Groups/ Caregiver Training 8,611 Respite Care 2,110 Supplement Services 603 Access Assistance 49,898 Information Services 9,176

34. IllinoisAccomplishments State-Funded GRG Program: Serves more than 4,000 GRG and their grandchildren each fiscal year. Lifespan Respite Grant-received a three year grant from AoA.

35. Future Directions • Evaluate the need with AAAs and service providers to incorporate a standard caregiver assessment into the service components of the NFCSP in Illinois. • Incorporate the NFSCP into the ADRC service delivery model. • Continue the collaborative efforts of the Lifespan Respite Program.

36. Future Directions Incorporate more consumer directed care service models in Illinois’ NFCSP. Improve collaboration with the Alzheimer’s Associations throughout Illinois. Continue to work with the AAAs and service providers to reduce the amount of missing data in submitted NAPIS reports for NFCSP.

37. Future Directions Incorporate the Parent Caregiver component into the service components of the NFCSP in Illinois. The Parent Caregivers provide care to adult children aged 19 to 59.

38. Contact Information Illinois Department on Aging Betsy Creamer, Planning Supervisor Betsy.Creamer@illinois.gov 217/524-7944 http://www.state.il.us/aging/

39. Ten Years of Caregiver Support: An Area Agency on Aging Perspective

40. Who are caregivers and what do they need?

41. Program Development • Community meetings • Consultations with Red Cross and disease-specific organizations • Caregiver Advisory Council • AoA and IDOA goals • Local needs assessment

42. Our Network • 11 Caregiver Resource Centers • Caregiver Specialists • Respite Registry

43. Powerful Tools for Caregivers • AoA demonstration • First AAA to use this program throughout our service area • All Caregiver Specialists trained • “Common language”

44. How do we identify and reach caregivers?

45. Outreach Initiatives • Business outreach • Physician outreach • LEP/ethnic outreach • Libraries • Schools • Faith-based organizations

46. Our Caregiver Program Today • Caregiver Resource Centers have developed local expertise • Internal and external collaborations • Tailored services to meet unique needs

47. Caring Together, Living Better • Grassroots partnership • Lower-income African-American communities • Funded by Weinberg Foundation • Used lessons learned from the past ten years • Leveraged the strength of the faith community

48. Future directions Greater emphasis on: • Volunteers • Technology • Evaluation Continued emphasis on: • Partnerships/outreach • Responsiveness/tailoring

49. Sarah Stein Countywide Caregiver Coordinator (708)383-0258 Sarah.stein@ageoptions.org Your comments/predictions?

50. Questions?