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					Ann Cameron Caldwell, Ph.D.
The Arc of the United States

2011 State Convention
August 11, 2011
   The Arc promotes and protects the human
    and civil rights of all people with intellectual
    and developmental disabilities and actively
    supports their full inclusion and participation
    in all aspects of the community throughout
    their lifetimes.
Joe Gilliam, former coach of Football Hall of Famer Richard Dent
3/2/2012   7
           “Those of us who have
           seen children live in
           the shadows know
           that a country as rich
           as ours cannot
           possibly justify this

3/2/2012                            8
    Despite much progress, our nation is falling short in
     providing opportunities for people with I/DD.
    Budget cuts and the economy have hurt everyone,
     but those with I/DD and their families among the
     hardest hit
    Appalling wait for services that may never come.
    Families are shouldering tremendous financial
     strain and personal stress.
    The future is uncertain.

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            62% report that
             services in community
             have been cut
            1/3rd are on waiting lists
             averaging 5.3 years.
            75% not satisfied with
             government funded
            43% report schools are
             cutting back as well
3/2/2012                                  10
   Less than one-third are being      4 of 10 parents are dissatisfied
    “fully included” in schools         with the quality of education
                                        their son/daughter received.

    3/2/2012                                                          14
   Learn a job related skill
   Learn about things of
    interest (72%)
   Get experience to help get a
    job (66%)
   Have a college experience
   Obtain technical degree or
    certificate (27%)
   Obtain certificate of
    completion (17%)
   Get travel training (16%)
   Earn GED/HS diploma (14%)
           Preferred setting:
            Regular job in the
             community (63%).
            Sheltered workshop
            Enclave setting (12%)
            Self-employment (7%)

3/2/2012                         17
82% - People with IDD should be paid
minimum wage even if not as productive
    Reported Sources of Income
      25% have NO income
      33% receive SSI
      21% receive Social Security
    Sources of Health Insurance
      60% Medicaid
      24% Medicare
      69% both

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    1 out of 5 had to quit a job to stay home
      67% unable to pursue own work & career goals
    80% report they don’t have enough money to
     pay for the care and support that is needed
    46% report more caregiving responsibilities
     than they can handle
    They are physically fatigued (88%),
     emotionally stressed (81%) and personal
     relationships (72%), health (72%) and
     marriages (58%) are being affected.
3/2/2012                                              24
    In the FINDS Survey, the majority of families
     (more than 60%) worry that:
      their family member with I/DD might have to live
       somewhere they don’t want
      they don’t have a plan for where the person will live
      they don’t have enough information about housing
    65% could use more help in planning
    84% report lack of retirement savings is a
     problem (52% a major problem)

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   Data reflects realities families face in the
   Challenges are not unique; solutions may be
   The Chapters of The Arc in Virginia are a
    powerful agent of change
   Family support is going to be a critical piece
    of solutions in the future as other traditional
    funding sources break down
    A new and reinvigorated movement to promote
     and protect the rights of people with I/DD.
    Recruit a million people to become part of our
      Establish national siblings council and self-advocates
    Clear message to Congress – don’t balance the
     budget on backs of people with I/DD.
    Don’t Cut Our Lifeline – tell stories of
     importance of Medicaid

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   Make concerns an issue in the 2012 elections
     Show up at town hall meetings and ask
      candidates what they will do
     Register people to vote
     Support the candidates that will support you
   Create dialogue with employers and the
    business community
   Raise public awareness
     PSAs and Social Media contest

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