Transcript Lifespan Respite

ARCH National Respite Network
and Resource Center
Presenter
Jill Kagan, MPH
Program Director
ARCH National Respite Network
and Resource Center
703-256-2084
[email protected]
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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 2007.
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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 50-75.
28% are caring
for someone under age
50, including children
Source: Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP,
2009.
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Family Caregiving in [State}
 In 2007, at anytime during the year,
nearly 1.4 million family caregivers were
providing care in [State].
 The value of their caregiving is
estimated at $[ ] 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, 2008.
(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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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
 Twenty-four (24) New Federal Grantees
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Why Do We Need Lifespan Respite
Systems?
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Respite: Too Little, Too Late
 89% of family caregivers
(those 65 million I
mentioned earlier) do
not receive respite.
 Survey did not ask these
families why they do not
receive respite, but we
know from research and
experience what the
barriers are.
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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
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Building Blocks for
Lifespan Respite
 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 Programs
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Lifespan Respite is like a Quilt
 It weaves together these extremely important, but
fragmented funding streams, disparate and duplicative
programs, and silos to form a seamless system that
make barriers invisible
to families.
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Characteristics of
Lifespan Respite Programs
 Identify and coordinate existing respite
resources/funding/programs at state level
 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 in
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
 Relies Heavily on Local Structures to Build
Resources: DHS worked directly with 22 local
respite networks (LRNs) serving all 36
counties in Oregon
 Diverse State Advisory Council brings Lifespan
Perspective
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Nebraska’s Lifespan Program
 Nebraska Lifespan Respite Services Program
created by legislation in 1999
Lifespan Respite Network
 Also has 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 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
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Oklahoma Structure
 No local/regional structure
 ORRN relies on a statewide resource
and referral system (OASIS) through
an 800 toll-free number and the web to
link families to the program, to respite
providers and to training
opportunities.
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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.
 By using OASIS, caregivers receive
information on other services and
supports besides respite.
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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 and again in 2010
 Administered by the US
Administration on Aging
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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
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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
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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
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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
 25% Match
Required
 Can be Cash
or In-Kind
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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 Status
24 State
Lifespan
Respite
Grantees
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Grantee Activities: Examples
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 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
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New Grantees: Roles of State Respite
Coalitions and ADRCs
State
Respite
Coalition
ADRC
State Lead
Agency
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What are these entities and
what do they do?
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Role of State Agencies
 All must engage in Program
Administration/Implementation/
Oversight/ Leadership.
 May undertake themselves to
Coordinate Respite Information
Coordinate Statewide Respite Databases or
Contract to Local Entities To Complete
Required Tasks
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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/voucher
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.
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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.
 North Carolina:
 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
 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
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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.
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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
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State Role: Getting Ready to Implement
Lifespan Respite
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FY 2011 Timeline
Congress
appropriates ???
million for FY 2011
AoA Program
Announcement
Expected
April 2011
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Lessons From First Round of Federal
Funding
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’s
Letter of Intent will be Expected
State Agency may subcontract for services, but no absolute passthrough permitted. State agency must maintain leadership role.
Use Reviewer Sheet from PA as checklist
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Questions to Consider
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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
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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/Barriers/Funding Sources
 Collaborate to Design Your State’s Program – What
should it look like??
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For More Information
ARCH National Respite Network
and Resource Center
http://www.archrespite.org/
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.
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