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Brown: Don’t forget how care for disabled got here

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Katherine Hamann was 12 before she learned she had an older sister. She was an adult before she met her for the first time.

Her sister, Margaret Doering, had been just 2 years old when their parents sent her to live in the sprawling Dixon State School for disabled children, believing as was common in 1945 that cutting ties would be best for everyone.

Back then, the doctors would have said Margaret was profoundly mentally retarded. Today we would say she has a developmental disability.

Margaret, 72, lives these days with five other women like her in a south suburban group home known as a “community integrated living arrangement” or CILA.

Last week, while lawyers for these group homes were in federal court to wrest overdue payments from the state to keep the doors open for Margaret and thousands of others like her, I met Hamann at a rally organized by social service providers caught in the state’s budget battle.

OPINION

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She told a story I thought you should hear, too.

When Margaret was 2, her mom, fearing she was deaf, took her to the family doctor. The doctor sent her to a specialist who pronounced her “feeble-minded” and said she should be institutionalized.

Margaret was nonverbal, still is, and had already become unmanageable for her young mother.

“They told her she would need too much care. They said it would place an undue burden on the family to keep her at home,” Hamann said.

This was during World War II, and their mother was living at home with her parents while their father was serving in the Coast Guard, stationed in the North Atlantic.

So they took the doctors’ advice, had Margaret declared a ward of the state and put her in the severely overcrowded Dixon facility, pulling strings to get around a waiting list, which should tell you they were hardly alone in this approach.

Then for reasons Hamann still can’t reconcile, her parents basically walked away from their daughter and didn’t go back.

They moved on with their lives and had three other children, including Hamann. For 17 years, Margaret had no visitors at all from the outside world.

Hamann, 10 years younger than her sister, knew none of this until much later.

It wasn’t until her brother pressed their mother about the mysterious mail they received from Dixon that she divulged the family secret.

“She described her as being a vegetable,” said Hamann, who says the Margaret she has come to know is anything but.

Hamann was 27 when she went to meet Margaret at Dixon for the first time.

When Dixon closed in the early 1980s, Hamann moved her to Howe Developmental Center in Tinley Park. That allowed her to become more involved in Margaret’s life. Hamann even took a job at the facility.

By the time Margaret turned 65, Hamann had come to the conclusion she would be better off in the smaller, more personalized setting of a group home.

In the Olympia Fields facility where she has lived these past seven years, Margaret has her own room, something she’d never had her whole life.

“That’s one thing everybody who works with her knows is how much she likes her room,” Hamann told me.

When Margaret wants to be around her roommates, she can go into the common areas. If she wants to be alone, she retreats to her room with the Lazy Boy rocker and stuffed animals that are so important to her.

Hamann surveys what’s happening to the developmentally disabled in Illinois and sees a state government that was never very good in danger of backsliding.

Gov. Bruce Rauner’s administration wants to cut thousands of disabled children out of the Early Intervention program that allows families to get specialized care for their disabled kids at an early age.

With such a program in place, Hamann believes her parents would have been much more inclined to raise Margaret in their home, and that with the proper help, might even have been able to teach her sign language.

Rauner also has taken the budget ax to the respite care program that allows these same families a few hours of help each week in the home to allow them to go to the store or take their other kids to a movie.

When coupled with the withholding of funds owed the providers, Hamann fears she sees a state headed toward sending its most vulnerable residents back to the grim institutions of yesteryear.

I’d be more worried the trend is toward abandoning them altogether.

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