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/

add/add/