Caregivers’ Perspective on Illinois Policy for the Intellectually and Developmentally Disabled

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There are few concerns greater than those of a parent with an adult with an intellectual or developmental disability (I/DD). How is she or he going to be taken care of as she or he ages? The government provides services and support in the pursuit of care and services, but how does that process work from the parent’s perspective? This study explored these questions by interviewing caregivers in this situation and learning how they understand and “package” state services for their adult dependent. Through these interviews with caregivers of adults with I/DD across the Greater Chicagoland, we find that recent efforts to standardize and simplify the obtainment of state-funded services fail to support families over an extended period of time, relying instead on caregivers to fill the gaps. By exploring the assumptions inherent in I/DD policy and funding meant to support families, this project reveals how the expectations in state policies not only clash, but can also make the everyday lives of adults with I/DD more challenging.

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  • 06/13/2018
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