Reform long overdue in state-run disability care facilities

Sunday’s article by Sam Roe and Jared Hopkins about the deaths at a Chicago nursing facility for children and adults with severe developmental disabilities ("Children with disabilities die on care facility’s watch," Oct. 11) is shocking but all too familiar in the disability rights community. The individuals who have died at this facility–13 during the past decade–are the most vulnerable in society. They are individuals with significant, multiple impairments who depend fully on the skill, attention and goodwill of their caretakers. Look at the photos of the dead children printed alongside the article. Read their names. Notice that their parents are described as indigent, in prison, unable or unavailable to advocate for their children. Then read that the Illinois legislature recently exempted facilities like this one from recent nursing home reforms and, according to the article, there was no lobbying to include these facilities in the reforms.

Unfortunately, Illinois has a long history of institutionalization, exclusion and neglect of people with severe developmental disabilities. Placement of children with significant disabilities in separate facilities and segregated schools occurs in Illinois at a rate greater than the national average. Families with the fewest resources see their children living in facilities like this one, where staff members assume equipment alarms aren’t working without bothering to check them, where working alarms are turned down so low they can’t be heard and where staff are overworked and forced to take shortcuts that compromise safety.

Even children who are not medically fragile face the likelihood that they will be hidden away from other children during much of their school day. Nationally, Illinois consistently ranks near the bottom of all states when it comes to educating students with intellectual disabilities in the same schools and classrooms with other students. When compared to the national average, more special education students in Illinois ages 6 to 21 receive over 60 percent of their services outside the general education classroom.

Roe and Hopkins’ reporting illustrates the complex network of factors contributing to the deaths of these 13 individuals, such as state politics, economic interests, histories of exclusion and the invisibility of poor people of color with significant medical and educational needs.

— Susan L. Gabel, Chicago

Copyright © 2010, Chicago Tribune

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