# Presentation: 359199

## 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

- The hurricanes
- Medicaid cuts
- TANF reauthorization
- Families living with disabilities
- Youth with disabilities

## Taking Stock of Human Services:  What the Hurricanes Taught Us

- Emergency 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 decisions

## Taking Stock:  Medicaid – the Numbers

- Nationally
- 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

- Hawaii
- 2,057 individuals, $142 million
- $34,800 in HCBS, and $106,600 in ICF-MR programs

## 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

## Taking Stock – Medicaid and Politics

- 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

- In 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 benefits

## 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

## Taking Stock:  Poor Families with Disabilities

- 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

- 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
- 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%

## Taking Stock:  Youth with Disabilities

- 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...

- 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

## Take 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

- 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...

- TANF, 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 program

## 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

## 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 Lady

## Take Time:  To Change Views

- 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

- 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

## 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 together

## Take 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

## 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

- Outreach
- Marketing
- A sounding board
- A confidant
- A satellite

## 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....

- Time 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 consequences

- 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

## Six Three Pointers

- Jason 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

## Lessons 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

## Mahalo

- Contact Information
- Patricia A. Morrissey, Ph.D.
- Commissioner,
- Administration on Developmental Disabilities
- Administration for Children and Families
- U.S. Department of Health and Human Services
- (202) 690-6590
- pmorrissey@acf.hhs.gov
- http://www.acf.hhs.gov/programs/add/