SAFETY NET CAN OFTEN FALL SHORT

Nora Prindiville still sleeps in the same bedroom she had as a child. She could only watch as her older brothers learned to drive, then left home for college.

She and her parents look forward to the day she becomes independent, but for Prindiville, even at age 27, leaving home is no simple matter.

The fact is, she has no place to go.

She has Down syndrome, which has limited her ability to function on her own, and there is a shortage in Illinois of funding to help people like Prindiville live independently.

Since the age of 15, she has been on a waiting list for a state-subsidized apartment or group home in Park Ridge. It’s likely her parents will have to die or become ill and unable to take care of her before housing can be found.

It’s a fate that hundreds of other Illinois families face as their developmentally delayed children come of age. Along with a lack of housing, they face shortages in employment, training and transportation.

Throughout Illinois, parents and advocacy organizations are trying to draw attention to the gap between the need and the available services. State officials concede that thousands of people are on waiting lists scattered among about 200 agencies.

The state will seek opinions at two upcoming public hearings in its first attempt at developing a strategic plan for offering services to the disabled.

The hearings will focus on the dropoff in services once the developmentally disabled reach 21, with one recommendation to begin tracking special education students as they graduate from the school system.

That time can be a nightmare for parents who are often ill-equipped financially and untrained professionally to deal with the confusing array of bureaucrats and social service agencies.

There is no clearing house that lists agencies and their services. Nor is there a central waiting list for services.

Most often, the mentally disabled remain at home, and families wait and hope for relief.

Lori Arrigo of west suburban Elburn wants better for her son, Matt Duke, 18, a happy and well-adjusted special education student at St. Charles High School.

Like Prindiville, Duke manages basic skills such as doing the laundry, answering the phone, getting dressed and riding the bus.

He is working toward independence both to boost his self-confidence, and to lessen his dependency on expensive social services.

Yet, Duke’s family knows he cannot live alone once he turns 21, and their search for supervised housing for him has turned up few, if any, real possibilities.

In fact, the frustrated director of one state-subsidized facility in Aurora describes her “200-year waiting list,” where any new admissions will go only to emergency cases. Everyone else will simply remain on the list and never move to the front of the line.

“It’s ridiculous, the situation that we have,” said Lynn O’Shea, director of the Association for Individual Development in Aurora. “We are stretched very, very thin, and it’s hard to tell families what to do.”

Melissa Wright, associate director of the Office of Developmental Disabilities within the Illinois Department of Human Services, said the state is working to develop a more comprehensive plan.

One way is by collaborating with other agencies, including the Illinois State Board of Education, on starting a database to collect information.

“We need to know who they are, where they are, what their disability is and what their capabilities are, and that data can only come from the schools,” said Wright.

But families fear this won’t be enough. They charge that Illinois, despite being one of the wealthiest states in the nation, ranks 43rd in per-capita spending for the developmentally disabled.

“Our kids are in the school system and everything is hunky-dory. The services are here, and then all of a sudden they reach 21, they are out of school and there is absolutely nothing, just nothing,” said Judy Birkner, of St. Charles and one of the founders of Advocates Network of Kane and Kendall Counties, an organization of west suburban parents trying to raise public awareness of their needs.

Parents complain that too much is being spent to house people with disabilities in institutions rather than smaller, community settings. It costs the state an average $93,000 per person a year in an institution, compared to about $35,000 annually for a person in a group home.

Often families put their names on more than one agency’s list in the hopes that something will open up somewhere. The turnover of residents at many agencies is low because people with disabilities are living longer, having received better medical care.

But even when there is a vacancy, it often goes to emergency cases, leaving people like Prindiville still waiting.

Misericordia Heart of Mercy in Chicago has 600 people waiting for vacancies at its two residential campuses, which offer on-site employment, therapy and other services.

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Officials there offer little hope that things will change.

“The only way we can take people off the waiting lists is to build,” said spokeswoman Paula Conrad. But construction is unlikely because of the cost.

The situation frustrates advocates like Tony Paulauski, executive director of the ARC of Illinois. The ARC, formerly called the Association for Retarded Citizens, is part of a national organization devoted to raising public awareness of the needs of individuals with developmental disabilities.

“It’s basic planning,” said Paulauski. “In Illinois, we spend $1 billion on community services for the developmentally disabled and yet we don’t have a plan.”

Of special concern to parents and social workers is what happens to the developmentally disabled as their parents age.

Statewide, an estimated 20,600 people with mental and physical disabilities live with caretakers age 60 and older, according to research by the University of Illinois at Chicago.

At least half of them are believed to be on waiting lists for all kinds of services.

Once a caregiver becomes infirm or dies, the state can step in and move the disabled person to a residential facility. But that only makes the trauma of losing the parent even harder.

“We all have an optimal time when we can accept change,” said Mary Prindiville, Nora’s mother. She and her husband would like to see their daughter settled before they retire.

Arrigo, 44, worries every day about what will happen to Matt as she and her husband age.

“He needs to have as much of a life as he can. He needs to learn how to be in the community and be by himself,” she said.

“I don’t want to be 65, 75, 80 years old and not be able to help him adjust. I want him to be as independent as he can be before I’m gone.”

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Public hearings are scheduled from 6:30 p.m. to 8:30 p.m. May 15 at the Ray Graham Association Hansen Center in Burr Ridge, and from 10 a.m. to noon May 16 at the James R. Thompson Center in Chicago.