2 Men, 2 Ways of Helping Illinois’s Mentally Disabled
JACKSONVILLE, Ill. (AP) - Jonathan Iacono-Harris has a job sorting small objects, like buttons. He has friends. He lives in a place where neighborhood kids play ball and folks gather for concerts. The mentally disabled 39-year-old also has an attentive staff making sure he doesn’t hurt himself or anyone else at the aging state institution he calls home.
Sixty miles away, Bryan Barnhart owns his own business stocking vending machines. He attends volleyball games and other local events. He too suffers from a disability and has round-the-clock care, but Bryan, 35, helps interview the staff in his own home and personally delivers their paychecks.
Two men living with disabilities, each content in his own particular kind of community and each illuminating one side of a divide over how Illinois should care for the mentally disabled.
The state faces a decision about whether both versions of community, the separate world of an institution, and homes scattered throughout Illinois cities will survive. Gov. Pat Quinn plans to phase out institutions and arrange for mentally ill and disabled people to live on their own or in small group homes, an approach labeled “community care.”
Most experts support moving disabled people out of institutions and into the most independent living arrangement possible. Many states have eliminated institutions entirely, and the Quinn administration says going that direction will improve people’s lives while making the state’s scarce dollars stretch further.
State officials say this kind of personalized care in the community is much less expensive than putting people in institutions between $45,000 and $84,000 a year compared to a range of $150,000 to $210,000 in institutions.
Some parents object, however. They fear their sons and daughters will react badly to leaving their familiar surroundings. Some have had bad experiences in earlier community care arrangements.
A closer look at the lives of Barnhart and Iacono-Harris helps explain the divide.
Iacono-Harris lives with about 185 other people at the Jacksonville Developmental Center, one of the first institutions to be closed under Quinn’s plan.
The center sits on a sprawling campus with a dozen buildings, some dating back to the 1850s. The interior, where employees quietly tend to the residents, resembles a nursing home. Staff decorates the white walls with paper cut-outs, now green shamrocks in anticipation of St. Patrick’s Day. They plan events and activities for residents and invite the community to attend, or take the residents off campus for sporting events or concerts.
“The standard of care at Jacksonville is one of the best I’ve seen. The staff is wonderful,” said Iacono-Harris’ father, David. “I will not OK him going into community care.”
Some residents are able to hold jobs in the community, with others working on campus. Residents can earn a paycheck doing tasks like sorting a certain number of buttons into a plastic bag. Iacono-Harris doesn’t like the sorting and doesn’t always stay at the workshops, his father said.
A retired social worker and professor, David Iacono-Harris supports de-institutionalization for most people but believes it’s not best for his son. Two attempts to move him to community care failed after a few days when he physically destroyed the interior of both homes, the father said.
“It’s kind of strange that I end up with the son who can’t be de-institutionalized,” he said. “They think it applies to every individual. It does not.”
David Iacono-Harris and his then-wife adopted Jonathan at age 4. He lived with the family for seven years until it became clear he needed supervision 24 hours a day.
Once, the father ran to the grocery while his son was napping. He returned to find Jonathan Iacono-Harris had “exploded” emptying cupboards, smashing jars and windows, even overturning a refrigerator. His mother and brother left the house in fear.
“We also had a biological son, and Jonathan was a danger to him,” his father said.
Even at the Jacksonville center, he says, an employee sits outside Iacono-Harris’ room at night because sometimes he will “just lose it.”
Like Iacono-Harris, Barnhart has had problems in community care. He became reclusive at two group homes and was sometimes physically aggressive toward the staff and residents, said his mother, Susan Barnhart. One home asked him to leave and a parent filed a restraining order against him at the other.
While his mother describes him as a “gentle giant,” at six feet and over 200 pounds, his obsessive compulsive disorder triggered behavior that was frightening to staff and residents.
Born without a disability, Barnhart suffered brain damage after an infection from a vaccine when he was 14 months old, his mother said. He lived with his family until he was 21, when his parents began considering what would happen when they were no longer able to care for him.
His parents could have placed Barnhart in an institution like Jacksonville, but they decided on a different approach. They formed a non-profit organization, with friends and family serving on the board of directors, licensed to oversee Barnhart’s care and distribute money from the state. Barnhart moved into his own two-bedroom townhouse in the central Illinois town of Canton, about five miles away from his parents.
He helps interview new caregivers and makes the final decision on hiring. “His question in the interview is, `Do you like the Cubs?”’ his mother said. The state provides the money for his round-the-clock care, but Barnhart delivers the paychecks himself to reinforce the message that he’s ultimately in charge.
His staff goes with him to community activities, local games, his nephews’ sporting events, and his work servicing vending machines and setting tables. He can’t read, do math or explain what he wants to eat, she said, but he can sign his first name, deposit money into his bank account and pick out food he likes in a grocery store.
Since starting the individualized program two years ago, his severe behaviors decreased and there has been no physical abuse to staff, his mother said. Barnhart makes friends with the people of Canton, like the firefighters who threw him a little birthday party when he came to stock their vending machine.
“I believe that he lives now like anyone else in the community,” Barnhart said.
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