LIFESPAN RESPITE:WHO, WHAT, WHY, WHERE AND HOW?UPDATED MARCH 2013
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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 2009
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Family Caregiving is Lifespan!
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
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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
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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
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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!
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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.
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Barriers to Respite8
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
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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?
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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
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Lifespan Respite is like a Quilt
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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.
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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
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Best Practices from Original State Lifespan Respite Systems
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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.
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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)
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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
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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
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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.
Program relies on existing funding streams funneled through single administrative system.
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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
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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
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State Lead Agency24
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.
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State Match Requirement
Cash In-Kind
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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
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Current Status28
Innovation and Promising Practices
Grantee Activities: Examples
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Innovations & Promising Practices
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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
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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 Collaboration32
Role of State Agencies
Program
Administration/Implementation
Program Oversight
Contracting to Local Entities
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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.
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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
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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.
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Coalition Significance to Lifespan Respite Program
Brings Age and Disability Diversity
Brings Respite Expertise and Skills
Ensures ongoing support for the program through advocacy
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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)
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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
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State Respite Coalition Examples in Grantee States
New York State Caregiving and Respite CoalitionHolds Annual Caregiver SummitNYSCRC web site to house program resourcesLiaison between grantee and community
Ohio Respite CoalitionDrafted Strategic Plan
WA
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Lessons Learned41
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
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Questions to Consider43
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
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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
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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!!
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For More Information
ARCH National Respite Network and Resource Center http://www.archrespite.org/
Lifespan RespiteTechnical 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.
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