LIFESPAN RESPITE: WHO, WHAT, WHY, WHERE AND HOW? UPDATED MARCH 2013 U

Family Caregiving in the US  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

Family Caregiving is Lifespan ! Majority of family caregivers caring for someone under age 75 (56%).  28% of family caregivers care for someone age  28% care for someone under age 50, including children. Sources: Caregiving in the U.S Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, 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 3

Family Caregiving in [Fill in your state]  In 2009, [fill in number of] family caregivers in [State] provided [fill in number of] million hours of care.  The value of their caregiving is estimated at $[amount] billion annually.  But they cannot do it alone! Source: 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 4

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

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! 6

Respite: Too Little, Too Late  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. 7

Barriers to Respite 8

For All Family Caregivers  Confusing and Restrictive Eligibility Criteria  Affordability Issues  Limited Providers or Respite Options  Reluctance to identify as caregiver or ask for help 9

10  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 Program Bureaucratic Maze of Funding Streams and Services

What is Lifespan Respite? 11

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 12

Lifespan Respite is like a Quilt 13  It weaves together extremely important, but fragmented funding streams, disparate and duplicative programs, and silos to form a seamless system that make barriers invisible to families.

Barriers to Building Blocks By coordinating siloed funding and service streams, Lifespan Respite converts barriers to building blocks for accessible respite systems. 14

Characteristics of Lifespan Respite Programs  Identify and coordinate existing respite resources/funding at state level  Maximize use of existing resources/leverage new ones  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 15

Best Practices from Original State Lifespan Respite Systems 16

Oregon’s Lifespan Program  State Agency: In 1997, Oregon Department of Human Services (DHS) charged by state law to develop statewide respite coordination  Relied on Local Systems to Build Resources: DHS worked directly with 22 local respite networks (LRNs) serving all 36 counties in Oregon  Diverse State Advisory Council brought Lifespan Perspective Note: Despite the fact that the Oregon Lifespan Respite Program was unfunded in 2010 because of serious state budget constraints, the program is included because it serves as a unique model for Lifespan Respite coordination that successfully demonstrated improved access to respite for over 14 years. 17

Nebraska’s Lifespan Program  Nebraska Lifespan Respite Services Program created by legislation in 1999  Lifespan Respite Network  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) 18

NE Respite Network More Regional than Local (like in OR)  Regional Structure: HHSS contracts with six (6) regional entities to form the NE Lifespan Network 19

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  No local/regional structure 20

Oklahoma’s Lifespan Program: Consumer-Directed  Family Caregivers eligible for respite vouchers of $ every three months as long as funds are available.  Encouraged to choose own providers from community/family support network.  Program relies on existing funding streams funneled through single administrative system. 21

Moving to National Scale  Lifespan Respite law signed in 2006  Funded for the first time in 2009 at $2.5 million  Level funded each year 22

Federal Lifespan Respite Care Program US Administration for Community Living, Administration on Aging administers competitive state grants for mandatory 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 23

State Lead Agency 24  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

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 Joint responsibility for the eligible State agency's Lifespan Respite program between the eligible State agency and a public or private nonprofit statewide respite coalition or organization. 25

State Match Requirement Cash In-Kind 26 25% State Match can be:

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 27

Current Status State Lifespan Respite Grantees

Innovation and Promising Practices Grantee Activities: Examples 29

Innovations & Promising Practices 30  Environmental Scans/Needs Assessments  Respite Registries and Databases  Marketing and Outreach Campaigns  Give Caregivers a Hand (AZ)  Take Time Texas  Volunteer Programs  TimeBanks Model (RI)  Faith-based  University Students

Innovations and Promising Practices 31  Respite Voucher & Service Delivery Models  Establishment of new voucher programs  Mobile respite (OK)  Respite Events  Mini-Grant Programs  Seed money  Local focus  Just One More (NC)  Respite Provider Training and Recruitment  NH Partnership with College of Direct Support

Lifespan Respite Built on Collaboration State Lead Agency ADRC State Respite Coalition 32

Role of State Agencies  Program Administration/Implementation  Program Oversight  Contracting to Local Entities 33

Aging and Disability Resource Center  Joint CMS and ACL/AoA Initiative;  Serve as “one stop shops” or "no wrong door” entry into long-term supports and services system for older adults and people with disabilities;  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. 34

Role of Aging and Disability Resource Center  Provide referral assistance  House respite data bases  Assist with outreach/public awareness  In TX, ADRCs are eligible local entities for administering State Lifespan Respite funds 35

State Respite Coalition  No definition of coalition in law or ACL/AoA program announcement  No requirements for structure or mission  Most respite coalitions predate Lifespan Respite; others developed because of it.  Coalitions have history of advocacy and networking; some progressed to service delivery and training.  In Lifespan Respite: Coalition’s role and activities completely determined by decisions jointly made between state lead agency and the coalition. 36

Coalition Significance to Lifespan Respite Program  Brings Age and Disability Diversity  Brings Respite Expertise and Skills  Ensures ongoing support for the program through advocacy 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, voucher program administration.  North Carolina Respite Care Coalition:  Serve on State Advisory Board  Responsible for New Training and Program Material Development (e.g. cultural diversity, volunteer respite guide) 38

State Respite Coalition Examples in Grantee States  Delaware Respite Network  Runs statewide voucher program  Holds annual state summit with focus on family caregivers  Arizona Caregiver Coalition  Advocacy role: responsible for helping enact state Lifespan respite legislation  Coalition volunteers run the 800 number for caregiver helpline 39

State Respite Coalition Examples in Grantee States  New York State Caregiving and Respite Coalition  Holds Annual Caregiver Summit  NYSCRC web site to house program resources  Liaison between grantee and community  Ohio Respite Coalition  Drafted Strategic Plan WA 40

Lessons Learned 41  It takes time….  Build on model approaches  Partnerships are essential  Flexibility is key  Performance measurement from day one  Sustainability focus is critical from the outset

Emerging Themes in Sustainability  Engage grassroots/community  Embed Lifespan Respite activities into ongoing state efforts  Forge State agency fiscal partnerships  Grow and support State Respite Coalition to work on sustainability  Develop Long-term State Respite Plan 42

Questions to Consider 43

How do we build or strengthen our State Respite Coalition? What role will it play?  Advocacy/Program Sustainability  Conduct Program Oversight  Provide Guidance and Expertise  Serve as Respite “Portal” to Lifespan System  Respite Provider Recruitment/Training  Develop Products  Deliver Services  Facilitate Networking 44

What will be the role of the ADRC?  Outreach, public awareness and information dissemination  Serve on State Advisory Teams or Task Forces  Expand Caregiver Training  Embed Respite Hotlines 45

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/strengths/barriers/funding sources  Collaborate to design State program – What should it look like?? How will we measure success?  Develop sustainability plan!! 46

For More Information ARCH National Respite Network and Resource Center Lifespan Respite Technical Assistance Center This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration for Community Living, 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. 47