Want to Change the Future for People with Disabilities? Start Today! 4 th Annual Wisconsin Statewide Self- Determination Conference 2011

There is a Need for Change Agents Policymaking is an Art, Not a Science The Personal is Political

Ways to Participate in Policymaking Simply voting Sharing a problem Joining an organization Serving on a council or committee Conducting research Lobbying Supporting a candidate Running for office

Erika Pugh: Change Agent

Why Get Involved in Systems Change? Parents As Advocates – Family Voices of Wisconsin 1973: Parents and providers advocate for Section 504 of the Rehab Act. Protection from discrimination : Disability rights advocates blocked an attempt by the Reagan administration to repeal parts of IDEA and Section : Large numbers in institutions; Segregation and sterilization. 1940s: Holocaust – 100,000 children and adults with disabilities killed; Considered flawed. 1950s: Parents still encouraged to institutionalize. Beginning of parent advocacy movement. Focus on winning civil and legal rights for their children. 1975: Parents and educators help to pass Education for all Handicapped Children Act which becomes IDEA. 1990: Self-advocates and community members lobby for the Americans with Disabilities Act (ADA) – full participation and independence. 1999: The Olmstead Supreme Court Decision interprets ADA to end unnecessary institution of people with developmental disabilities.

Our Nation’s Treatment of People with Disabilities Prior to IDEA and the ADA Justice Marshall concluded that persons with developmental disabilities have been subject to a lengthy and tragic history of segregation and discrimination that can only be called “grotesque”. – Concurring Opinion, Supreme Court 1984; Cleburne, Texas v Cleburne Living Center, Inc.

Characteristics of Effective Disability Policy Change Agents Passion Anger Frustration Commitment But also Channel emotions and beliefs into… Knowledge and Power!! Adapted from: How to Become Effective Disability Policy Change Agents; Robert Silverstein, 2006.

Julie Beckett: Change Agent

Before and After Before 1982 complex rules and regulations would prevent a family from getting support for a medically fragile child at home. After the Katie Beckett Waiver Program, more than 500,000 children and others have been able to live and be cared for at home.

Justin Dart: Change Agent Justin Dart, Jr. born August 29, His grandfather founded Walgreens. Contracted polio in Became Wheelchair user. Began to see injustice everywhere.

The “ADA Man” “ Without your believing and your leadership this day would not have been possible.” - George Bush, handwritten note to Justin Dart at the signing of the ADA, July 26, 1990.

Current Issues of Concern for People with Disabilities in Wisconsin Increasing Competitive Employment Families want their sons and daughters to be contributors and members of the community. Individuals want to work. This is possible, even for those with more significant disabilities. Employment is key to a good life. Schools spend a significant amount of $ educating our children with disabilities – many end up in sub-minimum wage sheltered work or unpaid day programs. Public tax dollars are used to fund poor transition programs which do not lead to employment in the community at competitive wage. Our long-term care programs will pay for day programs, but do not adequately promote employment – we have one of the lowest supported employment rates among neighboring states. Research shows competitive employment saves public $!

Current Issues of Concern for People with Disabilities in Wisconsin Increasing Competitive Employment– OPPORTUNITIES TO INFLUENCE Get involved in the Take Your Legislator to Work Campaign – Share your vision for employment with your own legislator - ask them to rebalance employment supports in Wisconsin so community employment is a REAL option. Write a letter to the editor Mentor other families and individuals! See:

Current Issues of Concern for People with Disabilities in Wisconsin Advancing Long-Term Care for People with Disabilities Long-term care is now capped in Wisconsin. Waiting lists are expected to grow to 15,000 in the next two years. Families and youth fall off a cliff at age 21 when they leave public school – there is no support during the day for transportation, employment or basic support of community activity. Individuals with disabilities who want to work often do not have access to supports and services to help them become employed. People in legacy waiver counties face an untold wait. “Urgent need funding” is not being used.

Current Issues of Concern for People with Disabilities in Wisconsin Advancing Long-Term Care for People with Disabilities - OPPORTUNITIES TO INFLUENCE Tell your story – waiting list story collection by Disability Rights Wisconsin – or VZnYUd5RGp6MURsRjlWYktSRFE6MQwww.drwi.org VZnYUd5RGp6MURsRjlWYktSRFE6MQ Write the governor. Lift the cap! Educate your own legislator –why is community long-term care the right thing?? Write a letter to the editor

Key Ingredients for Good Public Policy Making THIS IS NOT HARD AND IT CAN BE FUN! Problem illustrated with anecdote and data – Tell your story! Demonstrate that it’s not just you For legislator meetings: Ask for something Get a follow-up – develop a relationship!

Key Ingredients for Good Public Policy Making Dear X; Here’s my story (fill in blank) I am concerned about (fill in blank) because (blank) This should concern you because (fill in blank). I hope you will do (fill in blank).

Other Helpful Hints Wisconsin Council on Children and Families: Personal Visits Issue Hearings Telephone Calls Letter Writing s

Other Resources More state advocacy info: Federal:

Speak for those who cannot