Transforming Society

Taking Stock, Taking Time, and Taking Care

Bringing Meaningful, Positive Change to Lives of Youth and Poor Families
Who Live with Disabilities

Convergence

n The hurricanes

n Medicaid cuts

n TANF reauthorization

n Families living with disabilities

n Youth with disabilities

Taking Stock of Human Services: What the Hurricanes Taught Us

n Emergency people did not know how to appropriately serve individuals
and families with disabilities

n Vital services and supports vanished

n People with disability experience and expertise did not know how the
emergency response system operated

n Emergency people did not know there were people with disability
expertise ready and willing to help them make good decisions

Taking Stock: Medicaid -- the Numbers

Nationally

n DD/MR recipients represent 1.3 percent of Medicaid recipients, but 9.5
percent of spending

n 530,000 individuals with MR/DD received Medicaid in 2004 with \$27.4
billion

n Average of cost per person \$52,000 in HCBS programs and \$114,400 in
ICF-MR programs

n Average annual cost per person for all Medicaid beneficiaries is
\$7,000

Hawaii

n 2,057 individuals, \$142 million

n \$34,800 in HCBS, and \$106,600 in ICF-MR programs

Taking Stock: Medicaid Reductions and Disincentives to Working

n \$26.4 billion in spending reductions in Medicaid will occur over 10
years

n States have great discretion in how dollars are allocated

n Only 27 states offer Medicaid to people who are working (Medicaid
buy-in)

n Nationally, only 17 states have 33 percent of DD/MR Medicaid
recipients in competitive or supported employment

Taking Stock -- Medicaid and Politics

n 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

Taking Stock -- The Top 10 States on Innovative Use of Medicaid Dollars
for Community Placements

• New Hampshire Hawaii is ranked 23

• Maine

• Massachusetts

• Vermont

• Alaska

• Nebraska

• Washington

• Delaware

• Wisconsin

• Wyoming

Taking Stock: TANF and People with Disabilities

n In 2002 1 out of every 6 TANF families had a member on SSI

n Between 32 and 44% of TANF recipients report a work related impairment

n An estimated 20% of mothers on TANF report caring for a child with a
disability

n An estimated 20% of individuals with disabilities on TANF work

n Only 30% of people referred by TANF to SSI qualify for SSI benefits

Taking Stock: the New TANF Amendments

n TANF amendments and Medicaid cuts were in the Deficit Reduction Act of
2005

n 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

n lack of appropriate child care and

n 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

Taking Stock: Poor Families with Disabilities

n 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 Disabilities**

n Capacity 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

Taking Stock: Youth with Disabilities, the Numbers

93-94 2000-01

n Grad. w/diploma Hawaii 24%

n Am Indian/Alaska Native 52.2%

n Asian/Pacific Islander 28.0%

n Black 44.5%

n Hispanic 43.5%

n White 33.9%

-- Grad. Rate 43.5% 47.6%

-- Drop out rate 45.1% 41.1%

n Hawaii 70.0%

**Taking Stock: Youth with Disabilities**

n The 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

Take Time To...

n Engage the wider world

n Start small but think big

n Change views

n Change roles and develop new ones

n Get the focus right

n Know what to offer

n Know what is available, and be willing to barter

Take Time to Find Out What's Going On

n 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

n Governors are considering new ways to use Medicaid dollars

n Family Support 360: what it is, where it is, and where's it going

n Helping America's Youth: the First Lady's Initiative

n Youth Information,Training, and Resource Centers

What Would Happen If...

n TANF, Child Care, Social Security, Medicaid, Education, and Vocational
Rehabilitation staff sat down and helped a family develop a plan for
becoming self-sufficient

n Education and Vocational Rehabilitation staff, and the Chamber of
Commerce sat down with high school students and planned a mentoring and
job exploration program

Take Time: Start Small, Think Big

n 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

What would happen if ...

n The Governor of Hawaii visited the Hawaii Family Support 360 project

n The Governor of Hawaii decided to replicate it through out the State

n The Governor of Hawaii shared her plan with other Governors at an NGA
meeting

n The Governor of Hawaii shared her plan with the First Lady

Take Time: To Change Views

n It takes...

-- Respect

-- A willingness to listen

-- Patience

-- Facts

-- Direct experience

-- No letting go of, but sharing control

-- Partnerships

Take Time: Change Roles and Develop New Ones

n Think in terms of

-- functions

n who can do each one

n who should do each one

n who has the time

-- money

-- the time table and

-- the outcome

What Would Happen If...

n 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

n The local TANF office let special education majors run a child care
center in the office, while TANF staff worked with parents

n TANF, vocational rehabilitation, employment one-stop, and high school
special education staff took inservice training together

Take Time: Get Focus Right

n 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

What Will Happen If...

n We asked for the opinions of those we are assisting

n Families or youth are asked to assist other families or youth with
similar challenges

n In-kind support ends up being half of the budget

n 50 percent of employees were once customers

n Services were offered on Saturday at the mall

Take Time:\
To Know What To Offer

n Time

n Expertise

n Experience

n Networks

n Potential Partners

n Resources

n Message

n Strategy

n Planning

n Outreach

n Marketing

n A sounding board

n A confidant

n A satellite

Take Time: Know What Is Available, and Be Willing to Barter

n Research

n Points of entry

n One pagers

n What's in it for....

n The trade

n If it works....

What Would Happen If....

n Time banks blossomed all over the islands

n Human service agencies spoke one, family friendly language

n Sustainability was as much a personal commitment as a resource issue

n Assumptions are based on what you learn

n Partnerships are the core of services to families

n 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 consequences

n Credibility of a message may be tied to who delivers it

n People need to know how to fish, not to be handed a fish

n Risk taking and failure may be part of teaching someone how to fish

n Personal responsibility is an important component of any equation for
success

n You need to focus on one starfish at a time

Six Three Pointers

n Jason was manager of his HS basketball team in Rochester, New York

n His Dad thinks that it is great

n His coach and team mates like him very much

n The coach gave him a chance to play

n He made 6 three pointers

n Broke a record

n That wasn't luck

Lessons Learned from\
Jason's Story

If we ...

n Create opportunities

n Throw away stale assumptions

n Don't "take care" of someone, just provide the right environment

n Lives and systems, and society will be transformed

Mahalo

n Contact Information

n Patricia A. Morrissey, Ph.D.

-- Commissioner,

-- Administration on Developmental Disabilities

n Administration for Children and Families

-- U.S. Department of Health and Human Services

n (202) 690-6590

n pmorrissey@acf.hhs.gov

n http://www.acf.hhs.gov/programs/add/