State takes away job, friends for woman with IQ of 36

With an IQ of 36, Laura Hill doesn't have the mental capacity to remember that Illinois politics have taken away the only life she knows. So the 42-year-old Rolling Meadows woman must revisit the sadness anew each morning as her mother explains that the Clearbrook workshop in Palatine where Laura has loved performing simple jobs for the past 22 years is no longer open to her because Illinois legislators took away her funding.

"My Jay got fired for real," Laura says of her Clearbrook job coach, who was among more than two dozen workshop employees laid off. "I couldn't come back. I got cut. A budget cut."

All day long Laura parrots words and phrases her 79-year-old mother, Dorothy Hill, gently explains to her again and again.

"Every day is starting fresh with her mind," Dorothy says, her voice soft but strong. "Monday, she said, 'The weekend's over now. I go back.' I told her, 'No, you don't.' Tuesday, she woke up and said, 'I go back.' I said, 'No, you don't.' It's hard to explain. You have to have patience."

"Have to have patience. Patience," Laura echoes before that virtue is immediately overwhelmed by her desire to know when she can go back to work. "When is it? Is it tomorrow? It's not going to be tomorrow? When?"

That is what Carl M. La Mell, president of Clearbrook, and the 25 staff members he terminated at the start of the month want to know, too.

"The saddest, most cruelest, most unfair is that 80 long-term clients did not come to Clearbrook today and were told to say home! 'We can't serve you anymore!!!!'" La Mell wrote in a note he sent to legislators on July 2.

Before the July 1 budget cuts, Laura, whose cortical dysplasia keeps her with the mental abilities of a small child, was one of 150 adults with Down syndrome and other forms of mental impairment who would perform their jobs at the workshop from 9 a.m. until 3 p.m. weekdays. Seventy of those workshop clients continue to go every day because they are funded by a waiver system that includes a partial matching of funds from the federal government. Laura's grant of about $11,000 a year came entirely from the state, and was eliminated. Clearbrook uses that grant money to hire staff who counsel, help and monitor the workers.

Pay for the work­­ - stuffing envelopes, folding bags, maybe stocking a goody bag for a conference - isn't important for Laura, who lives on Social Security payments of about $1,100 a month. The work isn't a job in the traditional sense. It's make-work designed to keep Laura and her co-workers occupied in a safe, controlled environment. She's paid by the piece and proud of it, even though her two-week paychecks range between 5 cents and $11.

"It's really the social part and the camaraderie that is very important for our clients," explains Sheila Lullo, vice president of adult services at Clearbrook, where she has worked for 28 years.

"I like going there," Laura says. "I have friends. I just don't see them no more."

When Laura used the phone to call her friend Randy, the first thing she asked was, "Are you still going to be my friend?"

That loss of friendly, daily interactions with others was "a crushing thing," says Dorothy, a great-grandmother who no longer gets a respite in the constant care for her daughter. "She likes to be in the same room with me. She doesn't have the ability to play games so it's very hard to find things for her to do. It's so hard. Twenty-four/seven is pretty rough."

At the workshop, counselors kept Laura busy and curbed her habit of repeating everything she hears. Without that structure, Laura might regress.

"I'm just afraid it's going to go back to the same thing," Dorothy says. "The routine is what they need and security of knowing it's going to be there tomorrow. One of the very deepest things that bother me is she could talk to people there. They are on her level."

Laura plays softball, volleyball, basketball and bowls. She has won 122 medals in the Special Olympics. She loves mint chocolate chip ice cream, loading and unloading the dishwasher and going with her mom to Saturday night mass at St Colette's.

Dorothy has been a caregiver all her adult life. Married to Harold Hill in 1949, the couple had 10 kids, one with Down syndrome who died at age 5, and another who died of cancer as an adult. Her husband was diagnosed with multiple sclerosis at age 35, required a wheelchair since 1969 and was a quadriplegic when he died in 1987. Since her youngest child moved out in 2002, Dorothy has been caring for Laura by herself in the four-bedroom ranch home the family bought in 1956. Dorothy still hosts all the holidays, and had 59 guests on Christmas Eve.

Most weekday mornings, Dorothy would drive Laura to the workshop, pick her up every afternoon and take her to evening and weekend sports and other activities.

"Sometimes I look at some of the clients coming out of there, and I think how lucky I am," Dorothy says.

The only break in her round-the-clock caring came in 2001, when Dorothy broke her hip and needed hip-replacement surgery. Siblings watched Laura for the two months of Dorothy's rehab, and then the mom took over her lifelong job again.

Dorothy hasn't been to a movie in 13 years because Laura has a tendency to spend them in the bathroom. Even when Laura was going to the workshop, it gave Dorothy just a few hours by herself, not even a free day.

"I don't know what you call a 'free day,'" Dorothy says. "Explain that to me."

Clearbrook has dealt with budget cuts before, getting by last year on 12 percent less money from the state, Lullo says. But the sudden cut of all the grants showed a blatant lack of concern for people, La Mell says.

"Here I think, 'I'm not asking the state for anything. I'm keeping her at home,'" Dorothy muses. "And she's the one they let go."

Lots of older parents are in the same situation, Lullo says. If they can't care for their adult children without the workshop break, the state will have to find a much more expensive way to house and care for those people, she adds.

"That's not even an option," Dorothy says. In an effort to make sure that doesn't happen, Dorothy sits at the kitchen table and fills out forms in a bureaucratic maze to find other funding so Laura can go back to work.

"I stay home, watch a little TV with her, I guess. Yes, I do," Laura says. "I do."

"Sometimes we put the music on. I get kind of tired of 'SpongeBob,'" Dorothy says. "But she's a good girl."

"I am. I'm a good girl," Laura says. "Yes, I am."