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'Our situation is not urgent?'

A single mother struggles to care for a boy with brain damage.

By Chris Serres

November 10, 2015 at 3:41AM

Simon Heil is a 3-year-old boy who lives in northeast Minneapolis with his mother, Cristin Heil. He is blind and has cerebral palsy and hydrocephalus, a condition in which the brain swells with excess fluid. Here, Simon plays in the bathtub as he mother talks about the daunting job of single parenting Simon, without respite care and little outside help at their home Thursday, Oct. 8, 2015, in Minneapolis, MN.](DAVID JOLES/STARTRIBUNE)djoles@startribune.com Across Minnesota, thousands of disabled adults toil in sheltered workshops, performing mind-numbing tasks for meager wages in settings that segregate them from better jobs and the larger community. Their plight is one among many signs that Minnesota has fallen behind other states on the legal and civil rights imperative to integrate the disabled into mainstream community life. Minnesota's failings have drawn the wrath of a federal judge and left thousands of disabled adults in crippling isolation.**Simon Heil,Cristin Heil, cq (Dave Braunger — Special to the Star Tribune/The Minnesota Star Tribune)

For Simon Heil, age 3, the classical music floating from a nearby stereo signals the start of nap time.

But for his mother, Cristin Heil, the boy's slumber marks a chance to spring into action. In the brief window before Simon awakes, she will finish nearly a dozen phone calls and e-mails to county and state officials, checking on the status of her son's Medicaid benefits.

Seven months have passed since Simon was placed on a waiting list for aid known as a Developmental Disability waiver, and yet no one seems to have answers for her.

"They don't like to give concrete answers," said Heil, 27, a single mother and construction worker who lives in northeast Minneapolis. "It's always, 'He's on the waiting list, he's on the waiting list.' Just like thousands of other children."

Like many parents with children stuck on the waiting list, Heil is convinced her son would get a waiver if county officials knew the extent of his disabilities, which include cerebral palsy, autism, epilepsy, blindness and hydrocephalus, a dangerous buildup of fluid in the brain.

Though outwardly playful, Simon is unable to eat, crawl or sit up without assistance. He is also prone to choking, which means his mother must use a baby monitor at all times. Because of brain damage at birth, Simon is also ultrasensitive to lights, sounds and touch. Changing his clothes or a sudden unfamiliar sound can set him off screaming and shrieking.

A waiver, Heil said, would cover specialized therapy to develop his muscles and help him control his behavior. It would also pay for an aide to stay with Simon occasionally, giving her breaks to avoid burnout.

Heil keeps a daily log of the hundreds of phone calls and e-mails she has made since her son was placed on a waiting list. One of her journal entries said, simply, "CHECK WAIVER STATUS!" with an angry face and lines pointing to names of county administrators.

Heil said county social workers told her that Simon does not meet the "urgent" standard of need that would lift him to the top of the waiting list. When she asked them to define "urgent," she said, no one could give her an answer.

"How can they say our situation is not urgent?" she asked, as she gave Simon dinner through his feeding tube. "How can they say that when I have no life?"

chris.serres@startribune.com 612-673-4308