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State Becoming Like 'Ancient Sparta' With Cuts to Autism Services: Author

By Ariel Cheung | January 28, 2016 6:15am
 Walker Hughes (l.), is the subject of his father's second book,
Walker Hughes (l.), is the subject of his father's second book, "Walker Finds A Way," in which the Hughes family navigates the world of adult autism.
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Provided/Robert Hughes

LAKEVIEW — Robert and Ellen Hughes didn't watch Wednesday's State of the State address.

As far as they were concerned, they'd seen enough to realize the state wasn't functioning the way they needed it to. Worse, Robert Hughes said, "there's no end in sight."

In fact, just two days earlier, the Hugheses learned the state's largest social service provider, Lutheran Social Services of Illinois, was cutting 30 programs, unable to operate them with $6 million owed by the state that was seven months overdue.

Home care for seniors, adult protective services and a day care for adults with disabilities were among the suspended services.

It's a situation the Hugheses understand all too well.

At the heart of Robert Hughes' new memoir, "Walker Finds A Way," is his son Walker's transition into adulthood as a person with low-functioning autism in Chicago. After aging out of the school system at 22, Walker tests out independent life in a group home at the start of the book.

In "Walker Finds A Way," author Robert Hughes expands upon his first book's story of his son, 30, as the family breaks into new territory navigating Walker's life as an adult with low-functioning autism. [Provided/Robert Hughes]

The smiling young man who adores country singer Clint Black, "popcorn parties" and long walks through Lincoln Park seems eager for a chance at independence, which his parents also grow to enjoy after a brief period of empty nest syndrome.

But as six years go by, Hughes writes that the quality of care at the home declined in an alarming way, leaving Walker desperate to express his distress with limited verbal abilities.

Hughes, who lives in Lakeview, describes a subtle shift in the North Side group home he blames on the state's financial disarray — an added pressure for the home to take on too difficult of a workload.

"Behind this group home that went bad was the fact they were financially strapped," Hughes told DNAinfo Chicago. "They were making up rationalizations about Walker because they didn't have the staff to deal with the situation they had taken on."

Robert Hughes and his son Walker took daily walks for years, traveling from their Lakeview home to North and Clybourn, visiting Lincoln Park and making stops at Starbucks or Walgreens. [Provided/Robert Hughes]

While Walker was unable to verbally tell his parents what was wrong, his physical decline spoke volumes, they said. In two months, he lost 65 pounds. He started coming home with bruises, and his parents were alarmed.

Yet they felt trapped, fearing that pulling Walker from the home would cost him state funding for the service or leave them trapped on wait lists for years.

As they grappled with limited options, Gov. Bruce Rauner announced in April 2015 — World Autism Month — that he was freezing $1 million of state support for people with autism, many of them children.

"Illinois isn't ancient Sparta, where disabled infants were left to die of exposure on hillsides," Hughes wrote in the memoir. "But some voters here seem to envy the practice."

After writing "Running With Walker" in 2003, Hughes felt "his saga was over, as far as strangers reading a book about him were concerned." In the first memoir, Walker starts off as a "severely active" 2-year-old in the 1980s. At the time, autism was believed to affect one in 10,000 births (now, it's more like one in 45 children ages 3-17) and little was understood about the spectrum of abilities children with autism could display.

Walker Hughes, seen here as a child, is now 30 and continuing to forge his own path as an adult with autism. In "Walker Finds A Way" the 28-year-old Walker fights to express to his family dissatisfaction with his living arrangements. The book is a sequel to Walker's father's first memoir, "Running With Walker." [Provided/Robert Hughes]

As the first generational class of growing autism awareness reach adulthood, their changing needs are being considered at a national level. Earlier this month, presidential candidate Hillary Clinton announced a plan to improve safety, education, employment and housing for people with autism. Former Florida Gov. Jeb Bush and Ohio Gov. John Kasich have also addressed the topic.

As the Hughes family sought a solution to their turmoil, "I thought this is a story that should be told," Hughes said. "People should know about this."

"Walker Finds A Way" was released Jan. 21 and is available on Amazon.

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