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 !"$%&+,/0123456789:;<=>?@ABCDEFGHIJKLMO$2$sh@g^QܬMb$(+oy%"f@M2$囕uބ*$FT 0AA@8&'iʚ;ʚ;g4EdEd@:A 0ppp@ <4ddddl$ 03 <4BdBdl # 0g49d9d@:A 0p@ pp9___PPT10 6r___PPT9T{A04?  %O  =(CTransforming Society" < 0Taking Stock, Taking Time, and Taking Care Bringing Meaningful, Positive Change to Lives of Youth and Poor Families Who Live with DisabilitiesZ Convergence kThe hurricanes Medicaid cuts TANF reauthorization Families living with disabilities Youth with disabilities>Taking Stock of Human Services: What the Hurricanes Taught Us??(mEmergency 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 decisionsnZnJTaking Stock: Medicaid  the Numbers&&MNationally 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 $7,000$ ZCZN ^Hawaii 2,057 individuals, $142 million $34,800 in HCBS, and $106,600 in ICF-MR programs $ZXZ_?Taking Stock: Medicaid Reductions and Disincentives to Working@@ <$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=Z=HTaking Stock  Medicaid and Politics%%NThe 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&ii Taking Stock  The Top 10 States on Innovative Use of Medicaid Dollars for Community Placements`` vNew Hampshire Hawaii is ranked 23 Maine Massachusetts Vermont Alaska Nebraska Washington Delaware Wisconsin Wyoming 8u " PPu 0Taking Stock: TANF and People with Disabilities11UIn 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 benefitsVZV %Taking Stock: the New TANF Amendments&&TANF amendments and Medicaid cuts were in the Deficit Reduction Act of 2005 Three concerns are primary to the disability community -- the likely reduction in Medicaid benefits and the introduction of co-payments into Medicaid; under TANF no credit/counting for time in rehabilitation in the work participation process; and Under TANF lack of appropriate child care and the penalties connected to time off to interact with health care providers and educators, parents of children with disabilities cannot meet the 40-hour work requirement ^ZZZZ  .Taking Stock: Poor Families with Disabilities//4 Assumptions are inaccurate 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&  /Taking Stock: Poor Families with DisabilitiesCapacity is not what it should be 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&"" 3Taking Stock: Youth with Disabilities, the Numbers44 93-94 2000-01 Grad. w/diploma Hawaii 24% Am Indian/Alaska Native 52.2% Asian/Pacific Islander 28.0% Black 44.5% Hispanic 43.5% White 33.9% Grad. Rate 43.5% 47.6% Drop out rate 45.1% 41.1% Hawaii 70.0% Z(ZsZOZZZ(sO  &Taking Stock: Youth with DisabilitiesThe assumptions do not work  everything is organized/specialized from birth exploration is structured or scheduled special activities may be 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 protection is important acceptance of limitations is important reality check others are in a better position to decide how a kid with a disability spends his or her time/life \PPPP Take Time To& Engage the wider world Start small but think big Change views Change roles and develop new ones Get the focus right Know what to offer Know what is available, and be willing to barter Z JTake Time to Find Out What s Going On&&TANF: states must meet new work participation rates; many people with disabilities eligible for TANF do not meet SSA eligibility; ADD has been asked to take the lead help people with disabilities on TANF to get the supports they need, and go to work PPPPP Governors are considering new ways to use Medicaid dollars Family Support 360: what it is, where it is, and where s it going Helping America s Youth: the First Lady s Initiative Youth Information,Training, and Resource Centers*What Would Happen If& FTANF, Child Care, Social Security, Medicaid, Education, and Vocational Rehabilitation staff sat down and helped a family develop a plan for becoming self-sufficient Education and Vocational Rehabilitation staff, and the Chamber of Commerce sat down with high school students and planned a mentoring and job exploration programGG"Take Time: Start Small, Think Big##'It may start with saving one starfish, but it can become a legacy because 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 <NN,What would happen if & The Governor of Hawaii visited the Hawaii Family Support 360 project The Governor of Hawaii decided to replicate it through out the State The Governor of Hawaii shared her plan with other Governors at an NGA meeting The Governor of Hawaii shared her plan with the First LadyTake Time: To Change ViewsIt takes& Respect A willingness to listen Patience Facts Direct experience No letting go of, but sharing control Partnerships& t t-Take Time: 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 b <& <&  *What Would Happen If& Human service agencies routinely invited community-based and faith-based groups to the table to plan for how to better support families and youth with disabilities The local TANF office let special education majors run a child care center in the office, while TANF staff worked with parents TANF, vocational rehabilitation, employment one-stop, and high school special education staff took inservice training togetherZTake Time: Get Focus Right]The focus should be the family and/or creating natural supports for the family and the individual with a disability That takes finding ways to make the policies work for the family That takes being willing to use resources on and off the books That takes involving the family in the decisions that will affect the quality of the lives of its members*tZZt(What Will Happen If& We asked for the opinions of those we are assisting Families or youth are asked to assist other families or youth with similar challenges In-kind support ends up being half of the budget 50 percent of employees were once customers Services were offered on Saturday at the mall  #Take Time: To Know What To Offer$$\Time Expertise Experience Networks Potential Partners Resources Message Strategy Planning ]Z] ;Outreach Marketing A sounding board A confidant A satellite<Z<;Take Time: Know What Is Available, and Be Willing to Barter<<(Research Points of entry One pagers What s in it for& . The trade If it works& .,What Would Happen If& .vTime banks blossomed all over the islands Human service agencies spoke one, family friendly language Sustainability was as much a personal commitment as a resource issue Assumptions are based on what you learn Partnerships are the core of services to families Families opinions dictate the structure of the process<<#Taking Care: the Top 10 to Remember$$`1. You are making decisions that affect lives 2. People need information from you as much as you need information from them 3. Spend more time on what you can do than on what you can t 4. Recognize the choices to be made are not yours, and choices require options. 5. Don t avoid explaining consequences1Z1 .Credibility of a message may be tied to who delivers it People need to know how to fish, not to be handed a fish Risk taking and failure may be part of teaching someone how to fish Personal responsibility is an important component of any equation for success You need to focus on one starfish at a time/Z/Six Three PointersJason was manager of his HS basketball team in Rochester, New York His Dad thinks that it is great His coach and team mates like him very much The coach gave him a chance to play He made 6 three pointers Broke a record That wasn t luck  FLessons Learned from Jason s Story$$'\If we & Create opportunities Throw away stale assumptions Don t  take care of someone, just provide the right environment Lives and systems, and society will be transformed !MahaloContact Information Patricia A. 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