transforming society
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TransformingTransforming
SocietySociety
UCEDDs of the Future: Real UCEDDs of the Future: Real Opportunities, Real Opportunities, Real ChallengesChallenges
Context: A Case of Context: A Case of ConvergenceConvergence The hurricanesThe hurricanes Medicaid amendmentsMedicaid amendments TANF reauthorizationTANF reauthorization Families living with disabilitiesFamilies living with disabilities Youth with disabilitiesYouth with disabilities
What the Hurricanes Taught What the Hurricanes Taught UsUs
Emergency people did not know how to Emergency people did not know how to appropriately serve individuals and appropriately serve individuals and families with disabilitiesfamilies with disabilities
Vital services and supports vanishedVital services and supports vanished People with disability experience and People with disability experience and
expertise did not know how the expertise did not know how the emergency response system operatedemergency response system operated
Emergency people did not know there Emergency people did not know there were people with disability expertise were people with disability expertise ready and willing to help them make good ready and willing to help them make good decisionsdecisions
Medicaid – the NumbersMedicaid – the Numbers
DD/MR recipients represent 1.3 percent of DD/MR recipients represent 1.3 percent of Medicaid recipients, but 9.5 percent of Medicaid recipients, but 9.5 percent of spendingspending
530,000 individuals with MR/DD received 530,000 individuals with MR/DD received Medicaid in 2004 with $27.4 billionMedicaid in 2004 with $27.4 billion
Average of cost per person $52,000 in Average of cost per person $52,000 in HCBS programs and $114,400 in ICF-MR HCBS programs and $114,400 in ICF-MR programsprograms
Average annual cost per person for all Average annual cost per person for all Medicaid beneficiaries is $7,000Medicaid beneficiaries is $7,000
Medicaid: Funding Trend and Medicaid: Funding Trend and Current State Behavior Current State Behavior
$26.4 billion in spending reductions in $26.4 billion in spending reductions in Medicaid will occur over 10 yearsMedicaid will occur over 10 years
States have great discretion in how States have great discretion in how dollars are allocateddollars are allocated
Only 27 states offer Medicaid to people Only 27 states offer Medicaid to people who are working (Medicaid buy-in)who are working (Medicaid buy-in)
Nationally, only 17 states have 33 Nationally, only 17 states have 33 percent of DD/MR Medicaid recipients percent of DD/MR Medicaid recipients in competitive or supported in competitive or supported employmentemployment
Medicaid and PoliticsMedicaid and Politics
The top ten states that are promoting The top ten states that are promoting aggressively community based options aggressively community based options for DD/MR Medicaid recipientsfor DD/MR Medicaid recipients– State Legislatures – 4 Republican, 4 State Legislatures – 4 Republican, 4
Democrat, 1 split, 1 non-partisanDemocrat, 1 split, 1 non-partisan– Governors – 4 Republican, 6 DemocratGovernors – 4 Republican, 6 Democrat– State Governments (Legislature and State Governments (Legislature and
Governor) – 1 Republican, 2 Democrat, Governor) – 1 Republican, 2 Democrat, and 7 splitand 7 split
The Top 10 States on Innovative The Top 10 States on Innovative Use of Medicaid Dollars for Use of Medicaid Dollars for Community PlacementsCommunity Placements
1.1. New HampshireNew Hampshire2.2. MaineMaine3.3. MassachusettsMassachusetts4.4. VermontVermont5.5. AlaskaAlaska6.6. NebraskaNebraska7.7. WashingtonWashington8.8. DelawareDelaware9.9. WisconsinWisconsin10.10. WyomingWyoming
TANF and People with TANF and People with Disabilities – the NumbersDisabilities – the Numbers In 2002 1 out of every 6 TANF families In 2002 1 out of every 6 TANF families
had a member on SSIhad a member on SSI Between 32 and 44% of TANF recipients Between 32 and 44% of TANF recipients
report a work-related impairmentreport a work-related impairment An estimated 20% of mothers on TANF An estimated 20% of mothers on TANF
report caring for a child with a disabilityreport caring for a child with a disability An estimated 20% of individuals with An estimated 20% of individuals with
disabilities on TANF work disabilities on TANF work Only 30% of people referred by TANF to Only 30% of people referred by TANF to
SSI qualify for SSI benefitsSSI qualify for SSI benefits
The New TANF Amendments: Issues of The New TANF Amendments: Issues of Interest to Disability GroupsInterest to Disability Groups
Reduction in Medicaid benefits and the Reduction in Medicaid benefits and the potential introduction of co-payments into potential introduction of co-payments into MedicaidMedicaid
Under TANF no credit/counting for time in Under TANF no credit/counting for time in rehabilitation in the work participation rehabilitation in the work participation process; and process; and
Under TANFUnder TANF availability of appropriate child care and availability of appropriate child care and consequences of time off to interact with health care consequences of time off to interact with health care
providers and educators, parents of children with providers and educators, parents of children with disabilities cannot meet the 40-hour work disabilities cannot meet the 40-hour work requirement requirement
Poor Families with Poor Families with Disabilities: the Disabilities: the AssumptionsAssumptions
–They do not want to workThey do not want to work–They can’t workThey can’t work–Let’s rehabilitate first, then Let’s rehabilitate first, then try worktry work
–Let’s get them on SSI, that Let’s get them on SSI, that where they belongwhere they belong
Poor Families with Poor Families with Disabilities: IssuesDisabilities: Issues
There is plenty of information, but it There is plenty of information, but it may not be accessible or family-may not be accessible or family-friendlyfriendly
There are plenty of resources, but There are plenty of resources, but they are in separate agencies with they are in separate agencies with their own rulestheir own rules
Innovation is going on, but is in the Innovation is going on, but is in the form of demonstrations not statewide form of demonstrations not statewide practicepractice
Youth with Disabilities: Youth with Disabilities: the Numbersthe Numbers
2000-012000-01 Grad. w/diploma Grad. w/diploma 24.0% 24.0%
Am Indian/Alaska Native 52.2%Am Indian/Alaska Native 52.2% Asian/Pacific IslanderAsian/Pacific Islander 28.0%28.0% BlackBlack 44.5%44.5% HispanicHispanic 43.5%43.5% WhiteWhite 33.9%33.9%
– Grad. Rate Grad. Rate 47.6% 47.6%– Drop out rate 41.1%Drop out rate 41.1%
Youth with Disabilities: Youth with Disabilities: the Assumptionsthe Assumptions Everything is organized from birth Everything is organized from birth Exploration is structured Exploration is structured Special activities are safer Special activities are safer It’s not fair to other kids, especially in It’s not fair to other kids, especially in
sports, to make time or accommodation for sports, to make time or accommodation for kids with disabilities kids with disabilities
Observation rather than participation Observation rather than participation should be an acceptable option should be an acceptable option
Acceptance of limitations is important Acceptance of limitations is important reality check reality check
Parents and professionals should make all Parents and professionals should make all the decisionsthe decisions
UCEDDs Should Take UCEDDs Should Take Time To…Time To… Engage the wider worldEngage the wider world It’s OK to start small but think It’s OK to start small but think
bigbig Change viewsChange views Change roles and develop new Change roles and develop new
onesones Get the focus rightGet the focus right Know what to offerKnow what to offer
Find Out What’s Going OnFind Out What’s Going On
TANF: TANF: – states must meet states must meet
new work new work participation rates; participation rates;
– many people with many people with disabilities eligible disabilities eligible for TANF do not meet for TANF do not meet SSA eligibility; SSA eligibility;
– ADD has been asked ADD has been asked to help people with to help people with disabilities on TANF disabilities on TANF to get the supports to get the supports they need, and go to they need, and go to workwork
Governors are Governors are considering new ways considering new ways to use Medicaid dollarsto use Medicaid dollars
Family Support 360: Family Support 360: what it is, where it is, what it is, where it is, and where’s it goingand where’s it going
Helping America’s Helping America’s Youth: the First Lady’s Youth: the First Lady’s InitiativeInitiative
Youth Youth Information,Training, Information,Training, and Resource Centersand Resource Centers
We Can Start Small, But Think BigWe Can Start Small, But Think Big
What we choose to do individually and What we choose to do individually and collectively becomes a legacy if it…collectively becomes a legacy if it…– is lastingis lasting– is identifiableis identifiable– is understandableis understandable– changes lives for the betterchanges lives for the better– has a broad impacthas a broad impact– has strong face validityhas strong face validity– provides models for how to behave in the provides models for how to behave in the
futurefuture
To Change ViewsTo Change Views
It takes…It takes…– respectrespect– a willingness to listena willingness to listen– patiencepatience– factsfacts– direct experiencedirect experience– not letting go of, but sharing controlnot letting go of, but sharing control– partnershipspartnerships
Change Roles and Change Roles and Develop New OnesDevelop New Ones Think in terms of Think in terms of
– functionsfunctions who can do each onewho can do each one who should do each onewho should do each one who has the timewho has the time
– moneymoney– the time table and the time table and – the outcomethe outcome
Get Focus RightGet Focus Right
Whether training, research, Whether training, research, community outreach or community outreach or dissemination the focus should dissemination the focus should include the family and/or the include the family and/or the individual with a disability who we individual with a disability who we want to --want to --– assistassist– empowerempower– have includedhave included
Know What To OfferKnow What To Offer Time Time Expertise Expertise ExperienceExperience NetworksNetworks Potential PartnersPotential Partners ResourcesResources MessageMessage StrategyStrategy PlanningPlanning
OutreachOutreach MarketingMarketing A sounding boardA sounding board A confidantA confidant A satelliteA satellite
UCEDDs: Core Functions UCEDDs: Core Functions and the Futureand the Future1.1. Focus on the right Focus on the right
groups – e.g.groups – e.g.1.1. culturally and culturally and
linguistically diverselinguistically diverse2.2. youth (start early to youth (start early to
ensure transitions ensure transitions that work)that work)
2.2. TrainingTraining1.1. develop survival kits develop survival kits
for people getting for people getting ready to enter the ready to enter the fieldfield
2.2. prepare people for prepare people for emerging emerging professionsprofessions
3.3. ResearchResearch1.1. engage in cluster engage in cluster
researchresearch2.2. invest in strategic invest in strategic
dissemination dissemination 3.3. use participatory use participatory
research strategies research strategies as a common as a common practicepractice
4.4. Community OutreachCommunity Outreach1.1. engage in strategic engage in strategic
collaborationcollaboration2.2. engage locally, engage locally,
statewide, and statewide, and nationallynationally
The UCEDD of the The UCEDD of the Future Will….Future Will…. Have diversity – in faculty, staff, Have diversity – in faculty, staff,
students, partnerships, collaborations, & students, partnerships, collaborations, & people servedpeople served
Have mentoring programsHave mentoring programs Have independent fiscal expertiseHave independent fiscal expertise Establish/sustain political connectionsEstablish/sustain political connections Influence, know & “work” federal Influence, know & “work” federal
prioritiespriorities Market strategicallyMarket strategically
Thank YouThank You
I greatly appreciate and respect what I greatly appreciate and respect what you doyou do
You each are a transformer in your You each are a transformer in your own rightown right
You are about to translate what you You are about to translate what you know for the next generation of know for the next generation of directors, faculty, and staffdirectors, faculty, and staff
A legacy of leadership, vision, vitality, A legacy of leadership, vision, vitality, and inclusion is worth transferring with and inclusion is worth transferring with carecare
Contact InformationContact Information
Patricia A. Morrissey, Ph.D.Patricia A. Morrissey, Ph.D.– Commissioner, Commissioner, – Administration on Developmental Administration on Developmental
DisabilitiesDisabilities Administration for Children and FamiliesAdministration for Children and Families
– U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services
(202) 690-6590(202) 690-6590 NEW: patricia.morrissey@acf.hhs.govNEW: patricia.morrissey@acf.hhs.gov http://www.acf.hhs.gov/programs/http://www.acf.hhs.gov/programs/
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