By Devin Rose
River Forester Suzanne Haraburd said her brother, David, is unable to survive on his own for as little as an hour.
David is 53 but has the intellectual capacity of a two-year-old. He needs help preparing food, brushing his teeth, getting dressed and using the bathroom. He doesn't know not to avoid busy streets. Sometimes he can't sleep, so he wanders around the Morton Grove facility where he's lived for almost four years. There, he has two caretakers who need to watch him around the clock.
"I get all choked up when I think about it because it really means a lot to me," Haraburd said recently during an interview at her River Forest home. Since their mother died in the late 1990s, she's been David's legal guardian.
David suffers from autism and profound retardation, though Haraburd points out people would probably use the term "developmentally disabled" nowadays.
She calls her younger brother gregariousness and high-energy. He's very active, she says, and participates in the Special Olympics—"walking, of course." He's unable to speak, but his sister thinks he feels things more intensely than others. During her visits with him, they'll sit together or she'll take him out for coffee, but he appears overwhelmed if he's outside of a familiar place for too long.
After shuffling between facilities for years, David now lives at a facility that's part of Search, Inc., which serves people in the Chicago area with developmental disabilities. He and other residents rotate between stations during the day with a classroom-like program in Mount Prospect. There are rooms for art, music and technology, Haraburd says, and the residents help prepare healthy lunches with fresh ingredients. They interact with a teacher in groups and there is currently a social worker in charge of David's physical well-being.
But with a state deficit of billions of dollars that holds up its payments to providers, Haraburd is worried about the quality of services and money it might cost to ensure her brother remains well cared for.
"All the people at Search are top notch, but they are spread so thin," she said, adding the state currently owes the organization $2 million.
Under a specific waiver, states qualify for funding from the federal government to pay for services for people with developmental disabilities, said Jim Haptonstahl, executive vice president of Seguin Services, which has facilities for such individuals in Oak Park and River Forest.
The state generates revenue from tax dollars and supplements payments to vendors such as Search, Inc. with a reimbursement of half its costs from the federal government. Money is funneled through the state to the providers, but with a huge backlog of unpaid bills there's not enough cash for the state to make timely payments, Haptonstahl said.
As a result, those providers have to figure out how to provide services to their clients without state funding or any timeline on when those payments might come through.
Haraburd said more staff are needed to interact with her brother at Search. Since he doesn't talk, teachers will give more attention to the people that do, but more help would enable smaller groups and a better opportunity for him to engage. There aren't always two people in the house with him, which Haraburd said can be dangerous because he stands over six feet and is pretty strong. There are six residents in her brother's house when there really should be four, Haraburd said.
She especially notices the lack of staff when it comes to her brother's health issues. Staff at one facility he was at didn't keep up with his dental care, so she once had to pay $1,000 after David ended up in the hospital with bloody gums. She's worried about Medicare cuts too, which could mean an insurance company instead of someone at Search will be coordinating her brother's care. If he doesn't get what he needs, Haraburd and her husband may end up paying.
"That's definitely going to happen," she said. "It's just a matter of when."
Service providers are also concerned about what could be a long-term cut to state Medicaid programs.
In the 2013 fiscal year that begins July 1, Medicaid spending is targeted for a $2.7 billion cut from last fiscal year's levels, according to a report from the Chicago-based Center for Tax and Budget Accountability, said Ron Baiman, an Oak Parker and director of budget and policy analysis with the center.
"They're basically targeting Medicaid as a way to save money for other programs," Baiman said.
At Seguin, Haptonstahl said his staff have been telling families of clients to talk to elected officials in order to advocate for preserving funding. He said collaboration between similar agencies could help maintain services while helping to reduce costs.
At Thrive Counseling Center in Oak Park, which serves people with mental illness, president Nina Allen said her staff is "waiting on pins and needles" to see how the cut to Medicaid will affect their programs.
Thrive went months waiting for delayed payments from the state, but they haven't had to cut services yet due to strong community support.
Allen said the cut could mean not as many kids staying in school and less support for clients to keep housing and jobs.
"It's pretty scary what's going on," she said.