Friday, April 29, 2016

Illinois Independent Living Centers rally to oppose choice

According to an article in the Illinois Herald-News by Lauren Leone-Cross, 4/4/16, leaders from two Illinois Centers for Independent Living rallied opposition to House Bill 6304 in the Illinois House of Representatives. 

The bill would allow for “an alternative model” of licensing for “continuum of care” centers for people with developmental disabilities. It is supported by Misericordia, a long-established non-profit continuum of care community in Chicago.

According to the article:

Sister Rosemary Connelly, the nonprofit's longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities. "Community-integrated living arrangements are not for everyone, yet it's perceived as the ‘right and only way,’” Connelly said…“[Opponents] are really denying families the right to choice,” she added.

The Centers for Independent Living along with leaders from the Illinois ARC claim that the bill perpetuates “an antiquated system of service delivery and reinforces Illinois’ historic institutional bias."


As passionate as the opposition is about preventing communities like Misericordia from continuing to receive public funds, it was no match for Sister Rosemary. The bill passed through the House committee and has won approval by the Illinois House of Representatives.

If you visit the Misericordia campus, you will see that it is neither antiquated nor isolated. Misericordia, including its campus and community residences and businesses, has changed over the years to meet the changing needs of the disability community. When I was there in October 2015, they had just opened an Alzheimer’s nursing facility for people with disabilities as well as maintaining a variety of living and recreational facilities. It is located in a north side Chicago neighborhood with access to all the amenities of city life along with specialized services for people with the most severe disabilities.

The 2014 Home and Community-based Services (HCBS) rule is being exploited by federal and some state agencies and federally-funded advocates to limit choice and shift more responsibility onto over-stressed families and communities unprepared to serve people with severe disabilities. Misericordia’s programs and services may be in  jeopardy if this continues. 

And isn’t this ironic? Centers for Independent Living are required to have a majority of their staff and board members be people with disabilities, but their leadership opposes all congregate settings that group more than 3 or 4 people together when they have intellectual and developmental disabilities. Here’s an interesting question: If a person with ID/DD wants to work  at a CIL, could HCBS funding to assist the individual be denied because of the institutional quality of the CIL with so many people with disabilities in one place?

More on Misericordia...

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