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Transforming Society

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					Transforming Society
 UCEDDs of the Future: Real
 Opportunities, Real Challenges
Context: A Case of
Convergence
   The hurricanes
   Medicaid amendments
   TANF reauthorization
   Families living with disabilities
   Youth with disabilities
What the Hurricanes Taught Us

     Emergency people did not know how to
      appropriately serve individuals and families
      with disabilities
     Vital services and supports vanished
     People with disability experience and
      expertise did not know how the emergency
      response system operated
     Emergency people did not know there were
      people with disability expertise ready and
      willing to help them make good decisions
Medicaid – the Numbers

   DD/MR recipients represent 1.3 percent of
    Medicaid recipients, but 9.5 percent of
    spending
   530,000 individuals with MR/DD received
    Medicaid in 2004 with $27.4 billion
   Average of cost per person $52,000 in HCBS
    programs and $114,400 in ICF-MR programs
   Average annual cost per person for all
    Medicaid beneficiaries is $7,000
Medicaid: Funding Trend and Current
State Behavior

   $26.4 billion in spending reductions in
    Medicaid will occur over 10 years
   States have great discretion in how dollars
    are allocated
   Only 27 states offer Medicaid to people who
    are working (Medicaid buy-in)
   Nationally, only 17 states have 33 percent
    of DD/MR Medicaid recipients in competitive
    or supported employment
Medicaid and Politics

   The top ten states that are promoting
    aggressively community based options
    for DD/MR Medicaid recipients
    – State Legislatures – 4 Republican, 4
      Democrat, 1 split, 1 non-partisan
    – Governors – 4 Republican, 6 Democrat
    – State Governments (Legislature and
      Governor) – 1 Republican, 2 Democrat,
      and 7 split
The Top 10 States on Innovative Use of
Medicaid Dollars for Community
Placements
1.    New Hampshire
2.    Maine
3.    Massachusetts
4.    Vermont
5.    Alaska
6.    Nebraska
7.    Washington
8.    Delaware
9.    Wisconsin
10.   Wyoming
TANF and People with
Disabilities – the Numbers
   In 2002 1 out of every 6 TANF families had
    a member on SSI
   Between 32 and 44% of TANF recipients
    report a work-related impairment
   An estimated 20% of mothers on TANF
    report caring for a child with a disability
   An estimated 20% of individuals with
    disabilities on TANF work
   Only 30% of people referred by TANF to SSI
    qualify for SSI benefits
    The New TANF Amendments: Issues of
    Interest to Disability Groups

   Reduction in Medicaid benefits and the potential
    introduction of co-payments into Medicaid
   Under TANF no credit/counting for time in
    rehabilitation in the work participation process;
    and
   Under TANF
          availability of appropriate child care and
          consequences of time off to interact with health care
           providers and educators, parents of children with disabilities
           cannot meet the 40-hour work requirement
Poor Families with
Disabilities: the Assumptions

–They do not want to work
–They can’t work
–Let’s rehabilitate first, then try
 work
–Let’s get them on SSI, that
 where they belong
     Poor Families with
     Disabilities: Issues
   There is plenty of information, but it may
    not be accessible or family-friendly
   There are plenty of resources, but they
    are in separate agencies with their own
    rules
   Innovation is going on, but is in the form
    of demonstrations not statewide practice
     Youth with Disabilities: the
     Numbers
                                  2000-01
   Grad. w/diploma               24.0%
       Am Indian/Alaska Native   52.2%
       Asian/Pacific Islander    28.0%
       Black                     44.5%
       Hispanic                  43.5%
       White                     33.9%
    – Grad. Rate                  47.6%
    – Drop out rate               41.1%
Youth with Disabilities:
the Assumptions
   Everything is organized from birth
   Exploration is structured
   Special activities are safer
   It’s not fair to other kids, especially in sports, to
    make time or accommodation for kids with
    disabilities
   Observation rather than participation should be
    an acceptable option
   Acceptance of limitations is important reality
    check
   Parents and professionals should make all the
    decisions
UCEDDs Should Take Time
To…
 Engage the wider world
 It’s OK to start small but think big
 Change views
 Change roles and develop new
  ones
 Get the focus right
 Know what to offer
Find Out What’s Going On
   TANF:                            Governors are
    – states must meet new            considering new ways
      work participation rates;
    – many people with                to use Medicaid dollars
      disabilities eligible for
      TANF do not meet SSA           Family Support 360:
      eligibility;                    what it is, where it is,
    – ADD has been asked to           and where’s it going
      help people with
      disabilities on TANF to        Helping America’s
      get the supports they
      need, and go to work            Youth: the First Lady’s
                                      Initiative
                                     Youth
                                      Information,Training,
                                      and Resource Centers
We Can Start Small, But Think Big

      What we choose to do individually and
       collectively becomes a legacy if it…
       –   is lasting
       –   is identifiable
       –   is understandable
       –   changes lives for the better
       –   has a broad impact
       –   has strong face validity
       –   provides models for how to behave in the future
To Change Views

   It takes…
    – respect
    – a willingness to listen
    – patience
    – facts
    – direct experience
    – not letting go of, but sharing control
    – partnerships
Change Roles and Develop
New Ones
   Think in terms of
    – functions
        who can do each one
        who should do each one

        who has the time

    – money
    – the time table and
    – the outcome
Get Focus Right

   Whether training, research,
    community outreach or dissemination
    the focus should include the family
    and/or the individual with a disability
    who we want to --
    – assist
    – empower
    – have included
Know What To Offer
   Time                    Outreach
   Expertise               Marketing
   Experience              A sounding board
   Networks                A confidant
   Potential Partners      A satellite
   Resources
   Message
   Strategy
   Planning
UCEDDs: Core Functions and
the Future
1.    Focus on the right          3.    Research
      groups – e.g.                    1. engage in cluster
     1. culturally and                     research
         linguistically diverse        2. invest in strategic
                                           dissemination
     2. youth (start early to
         ensure transitions            3. use participatory
         that work)                        research strategies as
                                           a common practice
2.    Training                    4.    Community Outreach
     1. develop survival kits          1. engage in strategic
         for people getting                collaboration
         ready to enter the            2. engage locally,
         field                             statewide, and
     2. prepare people for                 nationally
         emerging
         professions
The UCEDD of the Future
Will….
   Have diversity – in faculty, staff, students,
    partnerships, collaborations, & people
    served
   Have mentoring programs
   Have independent fiscal expertise
   Establish/sustain political connections
   Influence, know & “work” federal priorities
   Market strategically
Thank You
   I greatly appreciate and respect what you
    do
   You each are a transformer in your own
    right
   You are about to translate what you know
    for the next generation of directors, faculty,
    and staff
   A legacy of leadership, vision, vitality, and
    inclusion is worth transferring with care
     Contact Information

   Patricia A. Morrissey, Ph.D.
    – Commissioner,
    – Administration on Developmental Disabilities
          Administration for Children and Families
            – U.S. Department of Health and Human Services

   (202) 690-6590
   NEW: patricia.morrissey@acf.hhs.gov
   http://www.acf.hhs.gov/programs/add/

				
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