By Tim Carpenter, The Topeka Capitol Journal, March 10, 2008
Three-year-old Bernard Carabello was made a ward of New York state when his physical impairments from cerebral palsy were misdiagnosed as mental retardation.
For 18 years, Carabello was treated at Willowbrook State School as if he couldn't comprehend events around him or grasp concepts as basic as the value of human affection. He was physically abused as a teenager at the Staten Island facility, but he didn't relinquish hope that one day he would be set free.
"It was the most horrible experience," Carabello said in a recent interview. "You wonder to yourself: Was I entitled to any kind of dignity in my life? Or did I lose all of that the minute I came to Willowbrook?"
On Wednesday night in Topeka, Carabello will share his story of triumph over tragedy.
An intervention
Carabello's life began to change in 1972 when Willowbrook physician Mike Wilkins invited ABC reporter Geraldo Rivera on a clandestine tour of residential halls scattered across the 400-acre campus.
Rivera produced a series of graphic TV reports that exposed the practice of incarcerating children in squalid conditions. Children sat in feces inside housing units rendered intolerable by stench. A majority of the 5,000 residents suffered from parasites, pneumonia and hepatitis. Most were denied meaningful educational programs. State budget cuts and severe understaffing made it possible.
Rivera's rendering of day-to-day perils faced by Carabello and others at Willowbrook became the catalyst for a reform movement that continues to this day.
One outgrowth was the creation by Congress of an independent, state-by-state protection and advocacy system for people with disabilities. The Disability Rights Center of Kansas, based in Topeka, is celebrating its 30th anniversary as a member of that network.
In recognition of that benchmark, the center is hosting a program 6 p.m. Wednesday at the Kansas Expocentre's Heritage Hall to examine the past, present and future of services for people with disabilities. Carabello, whose activism earned him the title "father of self-advocacy," and Wilkins, who practices medicine in the Kansas City metropolitan area, will be there to share their insights.
Carabello's memories are fresh.
"From 3 to 15, I was OK," he said. "I was considered one of those 'cute little kids.' The minute you hit puberty, all hell broke loose. I got the s--t beat out of me every day of my life — head kicked into the wall, sheet wrapped around my face to drag me across the room, put you in a straightjacket."
The master key
Wilkins joined Willowbrook's staff in 1970, and he said in an interview he was immediately struck by appalling circumstances at the largest facility of its kind in the nation.
He said he fell in with a group of parents at Willowbrook who believed the institutional model conflicted with desires of disabled people.
"What they really need is a loving family environment," he said. "They learn, just learn more slowly than other people."
Administrators at Willowbrook ordered staff to stop meeting with the parents, but Wilkins and social worker Elizabeth Lee refused. Both were fired.
"They were beginning to lose control of the parents," Carabello said.
Wilkins, who still had a master key to the patient-care buildings, called Rivera. The old, bulky key unlocked doors and a movement to de-institutionalize disabled people.
"The old way was not working," Carabello said. "It never did and it never will."
The last patients left Willowbrook in 1987. Many transferred to community-based group homes closer to their families. The shift away from institutional facilities reached the mainstream. In Kansas, hospitals in Winfield, Topeka and Norton were closed and the number of residents in community-based settings has grown. Large facilities in Parsons and Topeka remain open.
"There still is an institutional bias in our state," said Rocky Nichols, executive director of the state's Disability Rights Center. "We have come a long way, but we have a long way to go."
He said the cost of hospitalizing a person with developmental disabilities could be as much as $170,000 annually, while services in a community-based program could be $39,000 a year.
The Legislature should realign resources and policy to eliminate waiting lists for services, Nichols said. There are 1,300 people with developmental disabilities on a state waiting list. Gov. Kathleen Sebelius recommended a budget increase to prevent recurrence of waiting lists for people with physical disabilities, traumatic brain injury and the frail elderly.
Nichols said state reimbursement for salaries of people working in community programs for the disabled should be increased. Someone can make more money at a fast-food restaurant than working with the disabled, he said.
Tim Carpenter can be reached at (785) 296-3005 or timothy.carpenter@cjonline.com.