Monday, February 23, 2009

Developmentally disabled adults want to live independently but the system conspires against them

From the intro to a feature in The Daily Herald in Illinois:

When Chip Davis (pictured with his parents) is left home alone he's likely to get in trouble.

It's not because the Sugar Grove resident is bad. It's because the 32-year-old doesn't know any better. Davis has an IQ of about 40, giving him the intellectual capacity of a 5- or 6-year-old. As a result, the trouble Davis gets into is almost always the result of him trying to help out in ways that are sweet gestures, but beyond his ability.

He'll polish the entire bathroom with toilet bowl cleaner. He'll try to cook dinner and end up with a frozen pizza that's been in the oven for three hours. He'll wash the windows with furniture polish.

Davis cannot live by himself, but he wants the freedom and responsibility of not living at home and having his mom around all the time.

Brad Torrence also gets into trouble when left alone. Only the Geneva man's problems are the result of spina bifida, confining him to life in a wheelchair. He'll never drive. He can't lift himself onto a toilet. He needs some help to take a bath. But he, too, yearns for days away from home, a place where he can grow and be with others who can relate to his everyday obstacles.

Behind both Davis and Torrence are parents who love them. They don't beat them. They don't forget to feed and bathe them. And they live in relatively nice homes in relatively upscale neighborhoods. For those reasons, Davis and Torrence are on a list they might never leave until their parents are too old and feeble to care for them, or dead.

There are more than 850 people in Kane County with developmental disabilities in situations similar to Davis and Torrence. Statewide, there are nearly 16,000 people with developmental disabilities needing help of some kind.

But only those with emergency situations may ever actually receive it. Those are the people with abusive or neglectful caregivers, caregivers too old to care for them or the developmentally disabled who are already homeless for a variety of reasons.

There are nearly 2,700 people with developmental disabilities who are also in one of those dire situations. Everyone else is part of a database, which now doubles as a waiting list where luck of the draw reigns supreme.

Pam Nass doesn't feel very lucky. She entered her son, Chip Davis, into the system to wait for a housing match when he was 18 - that was nearly 15 years ago. Davis has watched his siblings grow up, move out and begin their own families while he's been left behind.

"I have known all along that what I wanted for Chip was independence," Nass said. "You want the best for your children. And, even though you feel guilty saying it, you want a little independence for yourself."

Nass and husband, Dale, both work. So does Davis thanks to vocational training by the Association for Individual Development, or AID, in Aurora. Davis is training to perform tasks at local businesses that need help with packaging or labeling of goods, such as fitting cups into plastic sleeves.

Torrence also gets help from AID, but has also begun the quest for housing. His dad, Greg, is also among the many unlucky people waiting.

"They rejected us because I'm not an emergency case, which basically means I'm not dead," Greg Torrence said.

His hopes for his son, Brad, are the same as Nass' hopes for Chip. But both of their hopes dwindle each year they continue to wait.

"There comes a point in time where, living at home, their growth stops," Greg Torrence said. "He talks about going to a group home. He's ready to go, and he can't. All I can tell him is, 'I'm working on it.'"

For a time, Greg Torrence and his wife even considered getting a divorce just to be able to say their son lived in a single-parent household and had a greater need. Now Greg Torrence is battling melanoma and facing surgery on his elbow that would make it impossible for him to lift his son from his wheelchair and into bed or the bathtub. Most people would view those health problems as bad luck at best. For the Torrence family, they may be their son's best hope for a more "normal" life.