Monday, August 1, 2011

Autism Forum: Parents Talk About Their Children's Options : Residents flock to Highland Park, IL for discussion about disability Aug 1 2011

Fort Sheridan resident Latonya Harris is the mother of an 11 year-old girl with cognitive impairment. Relatively new to the area, she has been frustrated in finding resources to help her daughter.

In hopes of gaining useful information, Harris attended the resource fair and forum on autism and developmental disabilities last week at the Highland Park Country Club.

State Rep. Karen May (D-Highland Park) sponsored the event, and introduced a series of panel discussions by describing her goals:

“My mission is for children with developmental disabilities to lead a normal life, for them not to be isolated, to have a home and not just a bed," she said.

May described how she wanted a forum where officials from townships, libraries, schools and park districts could gather with other organizations and parents so they could get creative in finding solutions to support families who are often overwhelmed.

Creative ideas overcome hurdles

Chris Kennedy, an attorney and father of a child with autism and epilepsy, opened the discussion with a grim overview of the services provided by the state government. He described a system based on outdated thinking that devotes more resources to institutions rather than the community settings or home-based services, which are generally seen as being more effective.

According to Kennedy, Illinois ranks 47th in per capita spending on persons with developmental disabilities in their homes and communities.

That set the stage for the remaining panels, which focused on what individuals can do to help their disabled children. A panel on housing, for instance, described solutions that family members created on their own.

Margaret Tanenberg, a director at the Center for Independent Futures in Evanston, recounted how two mothers formed a not-for-profit organization that helped families create supported-living alternatives so that their adult children can live more independently.

Self-started programs were also highlighted in a discussion on employment for the developmentally disabled.

Jacob Metrick described how a discussion about a dearth of employment opportunities for his sister with autism led to the creation of the Perk Center Café at the Park Center in Glenview. The cafe serves breakfast, lunch and snacks, but, more importantly, provides job skills and work opportunities for people with developmental disabilities.

Brenda Weitzberg spoke about how her son with Asperger’s syndrome was unable to find meaningful employment despite having a four-year college degree. Her son’s case was not unusual, she said, as 85 percent to 90 percent of people on the autism spectrum are unemployed or underemployed.

Weitzberg said she and her husband had set about to do something about it. They found that individuals with high-functioning autism have skills that are perfect for software testing: attention to detail, ability to focus, love of computers.

The couple created a company in Highland Park that provides software-testing services. Aspiritech now employs 10 people on the autism spectrum, enabling them to have work that is commensurate with their skills.

Government-funded programs were also discussed. Joanell Voigt of Community Alternatives Unlimited described how her not-for-profit agency helps advocate for families to receive funding from the Illinois government.

Teri Steinberg described a project called the Illinois Association of Microboards and Cooperatives (IAMC). The agency gives direction on how individuals can create a microboard, a not-for-profit association that benefits only one person.

Under the microboard approach, the person who is supported, and his or her family and friends, make up the board of directors. This enables a person with a disability to lead the life they want to live with the support of family, friends, community and public resources.

The panel discussions were preceded by a resource fair, featuring more than 20 organizations that provide a wide variety of services for the developmentally disabled.

Reaction

Afterward, May said she was “very pleased with the participation of the panel” but added that she was “disappointed that more elected officials did not come.”

But for Harris, the mother looking for help for her daughter, the evening was a complete success.

“I have been trying to get this information for years. Now I have a good start on what I can do," she said. "This forum was awesome."

## As posted at Patch.com, article By Yuji Fukunaga; Aug 01 2011

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