Equip for Equality, as the federally-mandated Protection and Advocacy System for people with disabilities in Illinois, is deeply concerned about the tragic stories reported in the Chicago Tribune article, Suffering in Secret (11/17/2016).  Such abuses and deaths are heartbreaking and they occur far too often in state-run institutions, nursing homes and group homes.  This important story illustrates the critical need for a robust and adequately-funded oversight system to address abuse, neglect and quality of care – a system which has been chronically lacking in Illinois for many years.

The challenges facing the state’s oversight system are compounded by Illinois’ failure to invest in community-based services, which has negatively impacted the quality of services and created a shortage of sufficiently trained and qualified staff.   This is certainly apparent from the incidents cited in the Tribune article. Unacceptably low wages for direct service workers in the community has created instability in the workforce and resulted in some workers doing longer shifts than is prudent or safe.

The problems highlighted in the Tribune article are not an indictment of community living for people with disabilities.  There is powerful and unequivocal support for community living in a large body of research that has consistently documented positive experiences of people with disabilities living in the community.  In a study by UIC’s Institute on Disability and Human Development following the closure of the state-operated Jacksonville Developmental Center downstate, 84% of the family members surveyed were satisfied with life in the community for their family member – and many of these families opposed the closure. See http://ahs.uic.edu/media/uicedu/ahs/documents/dhd/publications/JDC,Closure,Evaluation.pdf 

There is a nationwide movement to substantially reduce reliance on large congregate settings – not simply for budgetary reasons – but because people with disabilities thrive in integrated communities. What was noted by the Tribune’s own Editorial Board on 9-30-11 remains true today:

“Illinois’ treatment of the developmentally disabled lags way behind the times. Other states have proved convincingly that in most cases, institutionalizing people in big government-run facilities hurts everyone concerned and wastes money. Community-based organizations offer small neighborhood group homes and other varied options for care and generally provide better results at a much lower cost.”

The Tribune’s expose once again demonstrates the urgent need for Illinois to make critical and significant investments in the service and oversight systems to ensure the safety and quality of care for people with disabilities.  In our dual role as the state’s legal advocate for people with disabilities and as an independent watchdog over the service and oversight systems, Equip for Equality urges the state to take decisive and prompt action.  This is critical if further tragedies are to be prevented.

Deborah Kennedy

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Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
708-828-0188 (CELL)