Illinois citizens with developmental disabilities mobilize for self-advocacy

SPRINGFIELD, Ill.—Self-determination, freedom and equal access to opportunities. It has been the goal of our founding fathers and many other groups, including women and minorities, who have been deprived of their civil liberties in one way or another. It’s also the unifying goal of people with developmental disabilities, who gathered—more than 250 strong—in Springfield last month for a first-ever in Illinois: a statewide Speak Up and Speak Out Summit, designed to give individuals with developmental disabilities the tools and preparation to tell their personal stories.

“Illinois continues to lag behind the rest of the country in providing persons with developmental disabilities the right to equal opportunities,” says Lester Pritchard, chairman of the Illinois Council on Developmental Disabilities (ICDD). “Advocacy groups can help research and pilot programs for systems change, but it’s the people who want it who need to make sure they’re being heard. That’s what the Speak Up and Speak Out Summit was all about.”

During the two-day summit, individuals gained valuable knowledge, tips and tools to help them speak out as advocates for self-determination in the state of Illinois. Pritchard says the goal of the summit was to create a chorus of voices who can help tell personal stories and ensure they’re heard by friends, family, state lawmakers and other citizens of Illinois.

“We live in a state and country of freedom, democracy and individual rights, where every American, regardless of their abilities or disabilities, deserves to live a life based on the principle ‘all are created equal,’” Pritchard said. “Yet, people with developmental disabilities in Illinois struggle daily to exercise their rights to free and equal citizenship. The summit was designed to educate more champions within our own ranks and create a much stronger, louder voice to advocate for change in Illinois. We had more than 250 total attendees at the summit—all pumped up and excited to go forward and tell their stories as advocates for self-determination.”

Compared with many other states in the nation, Illinois lags far behind the rest of the country in helping people with developmental disabilities enjoy real choice and self-determination. Some examples including the following:

Illinois is nearly last when it comes to getting citizens with developmental disabilities out of state-run institutions, one of the most expensive and least effective ways to provide the customized support research shows can really improve quality of life for people with developmental disabilities.

Illinois has more state-run institutions than any other state.1

“There are lots of vocal proponents supporting segregation and separation—like institutions—but they’re almost never the individuals with the developmental disabilities,” says Pritchard. He says that too often, institutions were staying open for the wrong reasons. “Fear, jobs creation programs and parental anxiousness are some of the leading reasons why Illinois has not made the moves other states have made.”

In many states across the nation, including Michigan and New York, state-run institutions have been closed in favor of directing resources to individualized and community-based living arrangements. As a result of this systems change, Michigan only has approximately 200 individuals with developmental disabilities living in state-run institutions. In Illinois, nearly 3,000 people live in state-run institutions with 4,000 more living in institutions that are privately funded.

“One of the most effective ways we can impact change in this state is by speaking up and reminding our fellow citizens about the principles of our forefathers: that we’re all born free and equal regardless of race, color, creed and abilities and disabilities,” says Dr. Sheila Romano, EED, director of the Illinois Council on Developmental Disabilities. “Those of us who favor equal opportunity for all need to unite together and make sure we’re heard.”

Self-determination demonstrates success

The leading philosophy today in delivering support to people with developmental disabilities is built around self-determination. It means letting individuals with developmental disabilities be active in determining their own fate or course of action without compulsion; free will.

Dennis Harkins, president of A Simpler Way, Inc., and a former director of Wisconsin’s Bureau of Developmental Disabilities, is an expert in the field of developmental disabilities and travels around the country as a consultant to help states apply the self-determination philosophy to systems that support people with developmental disabilities. Harkins’ work is based on driving systems change that promotes equality and independence for individuals with developmental disabilities.

“Self-determination is a collective effort where individuals work to create a life in a community, regardless of its constraints, where people with developmental disabilities are free to make their own decisions—they choose where they live, how they live and how they spend their day,” Harkins says. “It also stands for taking action—working to not only drive bureaucratic and cultural changes needed for people with developmental disabilities to be fully accepted as citizens, but to also drive permanent change that allows people with disabilities and their families to be full partners in deciding how public and private program funding spent on their behalf is allocated.”

Harkins hopes the Speak Up and Speak Out Summit creates a catalyst for change in the state of Illinois, creating a system where individuals with developmental disabilities are free to be masters of their own fate.

About the Summit

With an attendance of more than 250 people, the two-day Summit featured active advocates from around the country, including Jason McElwain, a 17-year-old high school student with autism from Rochester, N.Y., who led his basketball team to victory in their final game of the season, and Michael Long, the first person with a developmental disability in the U.S. to be appointed to a public office. Additional Illinois advocacy experts led interactive and educational workshops giving advocates for self-determination the knowledge and tools necessary to join forces and speak out in support of freedom and equal rights for all Illinois citizens with developmental disabilities. To find out more about the 2006 Speak Up and Speak Out Summit, visit

1. According to “Disability at the Dawn of the 21st Century and the State of the States 2002”

From the Jan. 24-30, 2007, issue

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