BEST PRACTICES IN LIFESPAN RESPITE SYSTEMS: LESSONS LEARNED & FUTURE DIRECTIONS September 12, 2012 PRESENTERS: Greg Link, MA Program Officer Administration for Community Living U.S. Administration on Aging Jill Kagan, MPH Program Director ARCH National Respite Network & Resource Center
Session Overview 2 Family Caregiving, Respite & Lifespan Respite Programs Status of Program Development Best Practices & Lessons Learned Looking Ahead Q&A
FAMILY CAREGIVING & RESPITE
Family Caregiving in the US 4 62 million unpaid family caregivers Provide 80% of long-term care in the US Valued at over $450 billion a year in uncompensated care, more than total Medicaid spending in 2009.
Family Caregiving is Lifespan! 5 Majority of family caregivers caring for someone under age 75 (56%). 28% of family caregivers care for someone age 50-75. 28% care for someone under age 50, including children. Sources: Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, 2009. and Lynn Feinberg, L., Reinhard, Susan, C, Houser, A. and Choula, R. (2011). Valuing the Invaluable: 2011 Update The Growing Contributions and Costs of Family Caregiving, 2011 Update, AARP Public Policy Institute Issue Brief Insight on the Issues, Washington, DC: AARP
Respite is 6 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
Benefits of Respite 7 Improves family caregiver stress levels, which can affect physical and emotional health; Improves overall family well-being and stability; Improves marriages, sibling and other family relationships; and Reduces hospital costs and helps avoid or delay more costly foster care, nursing home or other out-of-home placements.
Respite: Too Little, Too Late 8 89% of family caregivers do not receive respite. Of those who do, they receive too little, often too late. Respite needs to be meaningful for caregivers, as well as care receiver.
9 Barriers to Respite
For All Family Caregivers 10 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
What is Lifespan Respite? 11
Lifespan Respite 12 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
Characteristics of Original Lifespan Respite Programs 13 Identify and coordinate existing respite resources at the state level Identify service gaps and create and monitor new respite services Recruit and train respite providers Connect families to respite services, providers, and payment resources Promote public awareness about respite
What do these best practice states 14 look like? OK s Respite Resource Network funnels 8 or ten of its state or federal funding streams through a consumer-directed respite voucher program. Oregon s Lifespan Respite Network has local programs in 22 counties where families could go to have all their respite needs met. Nebraska uses a similar localized approach but only has offices in six regions of the state. Lifespan respite subsidy program helps families who don t qualify for existing funding streams.
15 Federal Lifespan Respite Program
Federal Lifespan Respite Care Program 16 US Administration on Aging administers competitive state grants for mandatory uses of the 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
Lifespan Respite Built on Collaboration 17 ADRC State Lead Agency
18 Role of State Agencies Program Administration/Implementation Program Oversight Contracting to Local Entities
19 Role of Aging and Disability Resource Center Referral assistance House respite data bases Outreach and public awareness
20 Role of State Respite Coalition Brings Age and Disability Diversity Brings Respite Expertise and Skills Ensures ongoing support through advocacy
THE LIFESPAN RESPITE CARE PROGRAM: PROGRESS TO DATE
Four Years of Progress 22 Competitive Grants to States 2009-2012 30 States and DC Three-year projects TA Resource Center (2009 & 2012) FY 2011 & 2012 Expansion Grants For FY 2012 New State Integration & Sustainability Grants Expansion Grants New TA Resource Center
Lifespan Respite States 23 AK Hawaii CA WA OR NV ID AZ MT WY CO NM ND SD NE KS OK TX MN WI IA IL MO AR MS LA MI IN KY TN AL OH WV SC GA NY PA VA NC ME VT NH MA RI CT NJ DE MD DC FL 2009 Lifespan Respite States ( = 2012 Integration Grants) 2010 Lifespan Respite States 2011 Lifespan Respite States 2012 Lifespan Respite States
Innovations & Promising Practices 24 Environmental Scans & Needs Assessments Partnerships & Collaborations Marketing and Outreach Campaigns Respite Websites and Portals Database Development & Deployment Training Programs Faith-based Initiatives Volunteer Programs Respite Vouchers & Service Delivery Models Mini-Grant programs
Innovations & Promising Practices 25 Environmental Scans/Needs Assessments Basis for state future legislation State Respite and Strategic Planning Marketing and Outreach Campaigns Just One More (NC) Give Caregivers a Hand (AZ) Volunteer Programs Time Banks Model Faith-based
Innovations and Promising Practices 26 Respite Voucher & Service Delivery Models Establishment of new voucher programs Mobile respite Respite Events Mini-Grant Programs Seed money Local focus
Lessons Learned 27 It takes time. Build on model approaches Partnerships are essential Flexibility is key Focus on Sustainability Provide Support and Technical Assistance Performance measurement from day one
Looking Ahead - Nationally 28 Reauthorization FY 2013 Appropriations (and beyond) Ongoing Program Development & Refinement Infrastructure development Focus on service provision Data collection Performance measurement Sustainability Technical assistance
TOOLS AND RESOURCES
ARCH Resources and Tools 30 Fact Sheets Guidebooks Webinars State Lifespan Respite Summits Phone and Email Technical Assistance ARCH Quick News Updates National Respite Locator Service
ARCH Contacts 31 Jill Kagan, MPH Maggie Edgar, RN, MSW ARCH Program Director ARCH Senior Consultant 703-256-2084 206-632-5208 jbkagan@verizon.net edgar@zipcon.net ARCH National Respite Network and Resource Center http://www.archrespite.org/ 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.
32 Questions?
Contact Me 33 Greg Link, MA Administration for Community Living Administration on Aging Greg.link@aoa.hhs.gov