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/