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Making a difference for the developmentally disabled

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Raymond Cohen

JANESVILLE — Brave.

It's not a word you'll find among the many pages of Raymond Cohen's legal paperwork.

Those papers use words such as "aggressive," "complex" and "lead toxicity" to describe Cohen.

But LuAnn Kane keeps a smiling snapshot of Cohen in her office. She didn't label it "socially compromised," as Cohen's paperwork states.

Kane taped the word "brave" onto Cohen's picture.

Cohen, 19, Janesville, is one of about 2,000 adults cared for by the Rock County Developmental Disabilities Board. He lives in a home staffed by REM Wisconsin.

Cohen is a successful example of a person who, at the age of 18, made the transition from childhood institutional care to an adult home setting, said Kane, the interim director of the DD board. The board will become responsible for five such individuals this year, she said.

The proposed 2009 county budget includes $27.5 million—a 7.2 percent increase—for the DD board to care for 2,526 clients. Of the total, $3.1 million will come from the property tax levy. The rest comes from federal and state aid.

When Cohen moved out of Winnebago Mental Health Institute in 2006, he had no concept of things such as kitchen cupboards that can opened to choose a snack, Kane said. Being able to walk through unlocked doors into different rooms in a house was a new concept for Cohen.

So it's no surprise that it took time for Cohen, who is non-verbal, to understand that a home is a safe place where he can be comfortable.

Safety for clients and the community is the No. 1 priority when DD board staff consider housing options for adults with developmental disabilities, Kane said. Kane handles court services for Rock County's developmentally disabled adults, including guardianship and placement services.

Staff review placements annually to ensure clients are living in the most appropriate, least restrictive setting possible. Community placements, when appropriate, are not only better for clients, they're better for taxpayers, Kane said.

The cost of caring for people in group homes is about $500 per day compared to $1,000 or more per day in state institutions, Kane said.

Ray's story

Cohen was born a healthy baby after a normal pregnancy in 1989. He didn't eat well, but a switch from nursing to formula helped, according to Cohen's community support plan.

But Cohen's family got worried when, as a toddler, he failed to start using words.

Tests proved 18-month-old Cohen had lead poisoning.

He was treated, but at 3 years old, Cohen ate more lead-based paint chips, according to his support plan. At the same time, his mother was diagnosed with multiple sclerosis, and in 1994 she was admitted to Rock Haven.

Cohen's elderly father cared for the 5-year-old boy.

Cohen struggled to communicate and had frequent outbursts, making it hard for his father to control him.

When Cohen was 13, his father placed him in substitute care. His father died shortly after, according to Cohen's paperwork.

His mother died in 2004.

Cohen developed a relationship with his foster parents and started a program in the Beloit School District for students with exceptional educational needs.

Things were looking good, Cohen's paperwork states.

But as he got older, increased interactions and responsibilities became more and more stressful for Cohen. His outbursts were frequent and sometimes intense, according to his community support plan.

In 2005, Cohen was admitted to Winnebago Mental Health Institute. He was four months shy of his 16th birthday.

In October 2006, DD board and Winnebago staff prepared notes to get ready for Cohen's transition out of institutionalization.

Caseworkers indicated Cohen had potential to learn skills for daily living, despite his lack of opportunity to do so.

Notes on his medical and family history are limited. A caseworker interviewed Cohen's mother at Rock Haven before her death. The verbal description of Cohen and his younger sister left the caseworker to write, "The description of their physical condition would lead a reasonable person to conclude that cleanliness and physical care were deficient."

Caseworkers indicated Cohen was alert and able to communicate on a limited basis using hand signs and facial expressions. Cohen was described as a curious young man able to form relationships, although he did not initiate them with his peers.

"It would seem that Ray has had to endure the ‘overlooked' status of a child without a voice," Cohen's community support plan stated in 2006. " … We can change nothing about the past. We can work to get this complicated young man back to a setting where he is better supported, happier and enjoying the opportunity to participate in community activities."

Finding a safe, satisfactory situation for Cohen is a "tall order," according to his community support plan paperwork.

Cohen has no concept of personal safety and requires constant visual supervision. His disruptive behavior and tantrums must be dealt with consistently, "without a shred of punishment," according to his plan.

Kane glows when she talks about Cohen, who attends classes in the Genesee Lake School in Oconomowoc, and other DD board clients.

Adults with developmental disabilities are an integral part of our community, Kane said.

"It's great to see people do what they live to do and be happy," Kane said.