Docstoc

Lifespan Respite

Document Sample
Lifespan Respite Powered By Docstoc
					ARCH National Respite Network
          and Resource Center
     Presenter

         Jill Kagan, MPH
              Program Director
              ARCH National Respite Network
                 and Resource Center
              703-256-2084
              jbkagan@verizon.net




ARCH National Respite Network and Resource Center   2
  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.




ARCH National Respite Network and Resource Center   3
  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.

ARCH National Respite Network and Resource Center                                                                        4
  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)

ARCH National Respite Network and Resource Center                                                                5
  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
ARCH National Respite Network and Resource Center                                          6
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!

                                                      7
What is Lifespan Respite??




                             8
 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
                                                  9
  Why Do We Need Lifespan Respite
  Systems?




ARCH National Respite Network and Resource Center   10
  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.


ARCH National Respite Network and Resource Center   11
 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


ARCH National Respite Network and Resource Center                                 12
         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
ARCH National Respite Network and Resource Center          13
    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.




ARCH National Respite Network and Resource Center         14
        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
ARCH National Respite Network and Resource Center   15
  Best Practices in
  State Lifespan Respite Systems



ARCH National Respite Network and Resource Center   16
  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

ARCH National Respite Network and Resource Center    17
 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)

ARCH National Respite Network and Resource Center      18
  NE Respite Network More Regional
  than Local (like in OR)
    Regional Structure: HHSS contracts with six
     (6) regional entities to form the Lifespan
     Network.




ARCH National Respite Network and Resource Center   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
ARCH National Respite Network and Resource Center   20
  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.
ARCH National Respite Network and Resource Center   21
  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.
ARCH National Respite Network and Resource Center   22
  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

ARCH National Respite Network and Resource Center   23
  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

ARCH National Respite Network and Resource Center   24
  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
ARCH National Respite Network and Resource Center   25
  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
ARCH National Respite Network and Resource Center   26
  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.
ARCH National Respite Network and Resource Center            27
State Match
Requirement

 25% Match
 Required

 Can be Cash
 or In-Kind

                28
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
                                                29
  Current Status

                                                    24 State
                                                    Lifespan
                                                    Respite
                                                    Grantees
ARCH National Respite Network and Resource Center              30
   Grantee Activities: Examples




ARCH National Respite Network and Resource Center   31
    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
ARCH National Respite Network and Resource Center   32
  New Grantees: Roles of State Respite
  Coalitions and ADRCs

                                                      State
                                                     Respite
                                                    Coalition



                                         ADRC


                                                          State Lead
                                                           Agency




ARCH National Respite Network and Resource Center                      33
  What are these entities and
  what do they do?



ARCH National Respite Network and Resource Center   34
  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                               35
ARCH National Respite Network and Resource Center    35
   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.
ARCH National Respite Network and Resource Center                36
  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)
ARCH National Respite Network and Resource Center                37
  State Respite Coalition Examples in
  Grantee States
    Illinois Respite Coalition will:
                 800 number
        Establish
      Responsible for provider training
    Texas Respite Coalition:
      Distribute products
      Identify ongoing barriers and best practices
      Attract media attention and raise awareness



ARCH National Respite Network and Resource Center     38
  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.

ARCH National Respite Network and Resource Center              39
  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
ARCH National Respite Network and Resource Center                 40
  State Role: Getting Ready to Implement
  Lifespan Respite




ARCH National Respite Network and Resource Center   41
  FY 2011 Timeline
                                                         Congress
                                                    appropriates ???
                                                    million for FY 2011




                                                      AoA Program
                                                     Announcement
                                                        Expected
                                                        April 2011

ARCH National Respite Network and Resource Center                         42
  Lessons From First Round of Federal
  Funding




ARCH National Respite Network and Resource Center   43
                  Questions to Consider




ARCH National Respite Network and Resource Center   44
  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
ARCH National Respite Network and Resource Center                    45
  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

ARCH National Respite Network and Resource Center   46
  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??
ARCH National Respite Network and Resource Center    47
  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.


ARCH National Respite Network and Resource Center                                                                                               48

				
DOCUMENT INFO
Shared By:
Categories:
Tags:
Stats:
views:3
posted:11/4/2011
language:English
pages:48