Some parents of adult disabled children don't want Illinois residential institution closed

From The News-Sun:

WAUKEGAN, Ill. — Robert (pictured), 50, could lose the place he’s called home since 1983, but right now he’s more concerned about a bag of pretzels. It’s almost time for lunch, and he’s hungry. He signs the word “please,” and his dad opens the bag.

It’s not Robert’s job to worry. For his entire life, through bouts of seizures and a diagnosis of autism and profound mental retardation — through a series of disastrous placements beginning at age 5 — worry has been the job of his mom, Mary Vargas, and her husband Johnny.

“We didn’t want him to leave (home),” Mary Vargas said. “You get an evaluation, a diagnosis, and they said ‘institutionalization.’”

The Vargases are members of the Friends of Ann Kiley, which works in support of the Ann M. Kiley Developmental Center, 1201 Dugdale Circle, Waukegan, a state-run home for people with severe mental and physical disabilities. It opened in 1974 and now houses 220.

The Friends worry that Kiley’s very existence is in jeopardy, given the state’s looming deadline for a balanced budget — May 31 — and votes by both the House and Senate to slash 25 percent from the Department of Human Services. Both SB 2450 and HB 3717 propose eliminating line items for every state developmental center in favor of a lump sum that DHS could use for either state centers or privatized, community care. According to the Illinois League of Advocates for the Developmentally Disabled, the lump sum is $80 million less than the funding required to operate eight centers, including Kiley. If the plan is approved, four of the centers would likely close.

Kiley parents, like the Vargases, who live in Elgin, and Al Machak of Waukegan, whose son Richard, 48, has been at the center since 1985, argue that their children would not get the comprehensive services they need in small group homes. Kiley keeps medical personnel, including nurses on staff, and residents, who live in duplexes, see psychologists and speech and behavior therapists.

“This is a fully-integrated operation,” said Machak, who worries that legislators don’t understand DHS funding.

“We’re not against cuts,” Machak said. “We know Illinois is in trouble. But 25 percent? My God, that’s a lot.”

Parents also worry that displacement and disruption in care, should Kiley close, would be deadly to some residents.

“The people here, like my son, have severe medical and behavioral problems,” Vargas said. “They need structure. They can’t accept change. Their lives and well-being are at risk.”

Robert, according to Vargas, ran away from or was deemed too disruptive at previous facilities, including one in Lake County that was closed after an abuse scandal. But he likes Kiley. He no longer screams when his parents leave. He enjoys short trips to favorite spots in Waukegan, including the Peacock Restaurant and Dockside Dogs. But he is always happy to return home.

An estimated 400 employees work at Kiley, most of them members of AFSCME, American Federation of State, County and Municipal Employees. Union members include clerical, dietary, nurses and maintenance. About two-thirds of the membership, according to Local 785 President Cheryl Graham, are mental-health technicians. Starting salary for the position, according to a DHS job announcement, is $2,742 per month.

“We are very worried,” Graham said. “The threat of closure is real. We’re worried for our employees, but also for the individuals who live here.”

Kiley, which was built to house 450, has staved off closure before. It survived a budget blood-letting under former Gov. Jim Edgar in the 1990s, but the facility was downsized and about 20 of its duplex homes were closed.

A DHS spokesman could not be reached for comment.

“We’re hoping Terry Link, as whip for the majority party, has something up his sleeve,” Machak said.

“I wish I had about 10 or 12 billion (dollars) up my sleeve — that would solve every problem,” said Link, D-Waukegan, in a call from Springfield.

Link met with Friends of Kiley, who visited the statehouse early last week.

“We’re working day and night. This is a fluid budget process. Nothing is etched in stone right now,” he said. “I feel fairly good about Kiley not being closed. It’s clear the people want us to cut the budget, and we’re doing that. But a lot of positive things can come out of a negative situation.”

Meanwhile, Robert is enjoying his home, his job at a sheltered workshop, and the promise of his next Dockside ice cream cone.