DRO, partners notify Ohio officials: State DD system violates Americans with Disabilities Act
July 3, 2014 / ICFs
For the past 18 months, Disability Rights Ohio attorneys and advocates have been engaged in an extensive review of the system of residential services for people with intellectual and developmental disabilities in Ohio.
The review was originally prompted by an ongoing concern over the fact that Ohio leads the nation in the number of people in large congregate, institutional living facilities. For thousands of these individuals, this constitutes a violation of their rights under the Americans with Disabilities Act (ADA) and the Supreme Court's holding in Olmstead v. L.C., which require the State to serve people with disabilities in the most integrated, least restrictive setting in the community appropriate to their individual needs.
This investigation included a review of thousands of pages of public records, hundreds of interviews, and visits to large state institutions, private institutions (intermediate care facilities, or “ICFs/IID”), and smaller residential settings in the community. Stakeholder meetings were held with county boards of developmental disabilities, private service providers, university centers, the Ohio Developmental Disabilities Council, and perhaps most importantly self-advocates and family advocacy groups.
The DRO investigation was conducted in partnership with attorneys from the Center for Public Representation (CPR), Northampton, Massachusetts; and Samuel Bagenstos, a professor of law at the University of Michigan, and formerly Principal Deputy Assistant Attorney General for Civil Rights at the U.S. Department of Justice (affiliation stated for identification purposes only).
As the investigation progressed, concerns arose regarding the settings in which people with intellectual and developmental disabilities receive vocational and day services. Not only are thousands of people unnecessarily compelled to live in institutional settings, but they also spend their days working or receiving day services in segregated, facility-based settings. “Our investigation revealed that virtually all aspects of individuals' lives were segregated, from where they live to where they spend their days. This violates guidance from the U.S. Department of Justice on the integration mandate of the ADA, and is contrary to recent regulations from the federal Center on Medicaid and Medicare Services on home and community-based services,” said Kerstin Sjoberg-Witt, Director of Advocacy at DRO.
The consequence is complete segregation from their families, friends, and their broader communities and highly regimented lives with virtually no independence, self-determination, or dignity. Indeed, one individual told DRO that he feels he lives in “solitary confinement,” a reflection of the loneliness and isolation the State’s system creates. This level of segregation is present in both large and smaller institutional settings, the investigation found.
The State’s system has long been structurally biased in favor of institutional settings. Home- and community-based services waiver programs are nearly impossible to access, largely because county boards of developmental disabilities are responsible for paying the nonfederal share for these community programs, thereby encouraging them to shift people to institutional placements, for which the State pays the nonfederal match. Also, waiting lists for waiver programs throughout the state exceed a total of 40,000 people, which is expected to increase significantly in the coming years. People in institutional settings currently on waiting lists may not be able to move into the community for literally decades.
Based on these facts, DRO, CPR and Professor Bagenstos have sent a letter to state officials asking to negotiate a satisfactory remedy to this situation. The letter summarizes the findings from the investigation and proposes 12 remedial steps that the State must take to achieve compliance with the ADA. The State is asked to enter into negotiation with DRO and its partners "to resolve these matters without the need for formal legal action." A response is requested by July 31, 2014.
DRO and its partners sincerely believe that the problems encountered in its investigation can be resolved in a way that protects the rights of its clients, people with disabilities, to be free from unnecessary segregation and isolation, and also respects the State and county role in designing its developmental disabilities system.