ARCH National Respite Network and Resource Center

Presenter Jill Kagan, MPH Program Director ARCH National Respite Network and Resource Center March 4, 20112

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 March 4, 20113

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  28% are caring for someone under age 50, including children Source: Caregiving in the U.S Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, March 4, 20114

Family Caregiving in Ohio In 2007, at anytime during the year, nearly 2 million family caregivers were providing care in Ohio. The value of their caregiving is estimated at $14.2 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, (Washington, DC: AARP) March 4, 20115

What is Lifespan Respite?? March 4, 20116

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 Twenty-four (24) New Federal Grantees March 4, 20117

Why Do We Need Lifespan Respite Systems? March 4, 20118

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 March 4, 20119

10 Medicaid Waivers Health Care Reform 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

Characteristics of Lifespan Respite Programs Identify and coordinate existing respite resources Identify service gaps and 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 March 4,

Best Practices in State Lifespan Respite Systems March 4,

Oregon’s Lifespan Program State Agency: In 1997, Oregon Department of Human Services (DHS) charged by state law to develop statewide respite coordination Local Structure: DHS worked directly with 22 local respite networks (LRNs) serving all 36 counties in Oregon State Advisory Council March 4,

March 4, Nebraska’s Lifespan Program Nebraska Lifespan Respite Services Program created by legislation in 1999  Lifespan Respite Network  Lifespan Respite Subsidy (up to 312% of poverty) State Agency: Implemented by Nebraska Department of Health & Human Services (DHHS) 14

March 4, Respite Network Map Local Structure: HHSS contracts with six (6) regional entities to form the Lifespan Network.

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 March 4,

Oklahoma Structure  No local/regional structure  ORRN relies on a statewide resource and referral system (OASIS) through an 800 toll-free number to link families to the program, to respite services and to training opportunities. March 4,

Oklahoma’s Lifespan Program: Client Services March 4, Family Caregivers eligible for respite vouchers of $ every three months as long as funds are available. Encouraged to choose own providers from support network. By using OASIS, caregivers receive information on other services and supports besides respite.

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 March 4,

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 March 4,

21 Lifespan Respite Programs Must… Advance State’s Ability to Meet Respite Needs Serve all Population/Disability Groups Coordinate With, and on Behalf of, Existing Respite Programs and Infrastructures Have a Consumer Focus Demonstrate Stakeholder Collaboration March 4, 2011

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 March 4,

State Match Requirement 25% Match Required Can be Cash or In-Kind March 4,

March 4, Current Status 24 State Lifespan Respite Grantees

Grantee Activities: Examples March 4,

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 26March 4, 2011

New Grantees: Roles of State Respite Coalitions and ADRCs State Lead Agency ADRC State Respite Coalition March 4,

28 Role of State Agencies Program Administration/Implementation Program Oversight Contracting to Local Entities Coordination of Respite Information Coordination of Statewide Respite Databases March 4, 2011

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. March 4,

What are these entities and what do they do? March 4,

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 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. March 4,

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. March 4,

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) March 4,

State Respite Coalition Examples in Grantee States Illinois Respite 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 March 4,

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 March 4,

State Role: Getting Ready to Implement Lifespan Respite March 4,

March 4, FY 2011 Congress appropriates ??? million for FY 2011 AoA Program Announcement Expected April 2011

Lessons From First Round of Federal Funding March 4, If additional Congressional funding is forthcoming, it may be possible for current grantees to apply again. This Year’s Program Announcement (PA) will be similar to last year’sLetter of Intent will be Expected State Agency may subcontract for services, but no absolute pass- through permitted. State agency must maintain leadership role. Use Reviewer Sheet from PA as checklist

Questions to Consider March 4,

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 March 4,

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 41March 4, 2011

42 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?? March 4, 2011

For More Information ARCH National Respite Network and Resource Center 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. March 4,

Breakout Workgroups March 4,