When Chip Davis 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.
Lilia Teninty, director of the division of developmental disabilities of the Illinois Department of Human Services, did not respond to an interview request.
Do you feel lucky?
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.
But there's a couple other obstacles they share with all the other parents of people with developmental disabilities.
A group home
The first problem is finding assisted housing. For families like Davis and Torrence's there's no guarantee that if their luck changed and they received a call about an opening in a state facility that it would be anywhere near where they currently live. Indeed, a good number of state facilities for people with developmental disabilities are located far south of I-80.
Does a person with a developmental disability who spent his whole life at home want to move someplace where his family could not come to his side within a couple hours notice? The answer for Torrence is no. He'd much rather stay in his hometown and live at the new group home Geneva has created.
That home took 20 years of planning and fundraising for Geneva to create. It will house between four to six residents when it is running at full capacity. It's quite possible none of the residents will be from Geneva. But local organizations that help place developmentally disabled people in such group homes say just the fact that it was built at all is quite an accomplishment,
Organizations such as AID are currently awaiting the results of their pleas to Kane County for help in establishing more group homes. The county is set to receive about $2.6 million from the Fannie Mae/Freddie Mac bailout to assist communities with foreclosed properties. The establishment of new group homes would be one possible use of at least part of this money.
But Darlene Bakk, president of the League of Women Voters of Geneva-St. Charles, said history shows serious county funding for new group homes is a farce. The league conducted its own two-year study of the issue and found Kane County has not placed much of a priority on the issue.
"They tell you it's priority one, then you ask them, 'Well, who did you give money to?'" Bakk said. "They haven't given money to any of the projects."
Bakk pointed specifically to the $50,000 the county gave to help build the group home in Geneva compared to the $300,000 from the same pool of funds given to tear down the old Valley View Youth Center and build a park.
"So it's really the No. 1 priority?" Bakk said. "Build a park. Hurray, Hurray. Well, we were looking at that same property to do housing for people with disabilities. That's the type of thing that really infuriates me."
But that's only half the funding problem.
Other concerns
For Pam Nass and Greg Torrence, finding housing for their developmentally disabled sons is only half a victory. A year of care in a state home costs up to $150,000 a year. A local group home would cost significantly less, up to $60,000 a year, but that's still not affordable for many families.
"The biggest issue is getting people approved for funding and a rate established and having consistent funding at that amount," said Joyce Helander, executive director of the DayOne Network, which is an entry point for disability services in Kane, Kendall and part of Cook County. "The money has to follow the person."
Except there is no money. In fact, there's perhaps less money than ever as Illinois sinks further into the red. Even funding for the DayOne Network is an adventure. The cash flows in from the state on a month-to-month basis, leaving Helander biting her nails every time payroll comes around and the money hasn't arrived yet. So it's no surprise when even solid community efforts like the new group home in Geneva struggle to get started.
"They won the home, but that doesn't mean they have the program funding to staff it," Helander said. "To get help, you have to be in an emergency situation. Emergencies use up all the dollars out there. And to qualify as an emergency it really has to be such an exaggerated situation. There are a number of families who think, 'Well, gee, I think what I have is an emergency.' The number of people waiting for care is just ridiculous. We spend a whole lot of entitlements on education for the developmentally disabled up to age 21. Then what? All that just pours out of their ears because there isn't state funding to help these people continue on with meaningful programs."
That leaves people like Pam Nass waiting for only one scenario for her son to get the life she dreams of for him.
"I've always thought that my only hope was to just turn 75," she said. "Until then, we're just not what gets the help."
An emergency with no response
For the developmentally disabled, an emergency situation occurs when their caregiver is sick, hospitalized, suddenly disabled, dead or abandons or abuses them. Emergencies also include improper placement, such as in a homeless shelter or a hospital that is too expensive. These are the priority situations, but many more developmentally disabled individuals need help who don't quite reach that emergency level. Low state funding levels to address these needs have created waiting lists for help so long that often the only way to move up or off the list is to become an emergency.
Developmentally Disabled persons with Emergency Needs by County:
Cook (outside Chicago): 811
DuPage: 245
Kane: 126
Lake: 126
McHenry: 47
Total: 1,355
Total statewide: 2,671
Total number of developmentally disabled in Illinois who need service: 15,800
Source: Illinois Department of Human Services reports from Nov. 18, 2008