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Study May Reveal Troublesome Attitudes, Actions Against Facility-Based Services
The MASWM Legislative Committee recently reviewed an Ohio study that found issues with programs that may target workshops and other facility-based services. The findings seem to echo the tactics used in other states for topics like dismissing parents and other close supporters of people with intellectual and developmental disabilities.
Led by Chair Kit Brewer, the group reviewed findings of Ohio’s Joint Committee to Examine the Activities of the State’s Protection and Advocacy System and Client Assistance Program that were released earlier this spring. The findings are some of the most significant yet that document how people with moderate and especially severe disabilities are being shortchanged by a focus away from services like workshops.
Clear Conclusions
The report’s third paragraph about the state’s Protection and Advocacy System and Client Assistance Program (P&A and CAP) is a good summary of the findings:
“Despite being Ohio’s P&A and CAP, with the responsibility to protect the rights of individuals with disabilities, the testimony given by parents, guardians, and family members expressed concerns over DRO’s administration of its service system. Specifically, the testimony described DRO’s excessive litigation against the State to which families objected. It also described DRO’s efforts to promote transfers of residents out of ICFs, sheltered workshops, and facility-based day programs into community settings without regard to individual choice and parental rights. Those efforts included DRO staff meeting privately with ICF residents without their guardians or parents present to encourage them to leave their ICF placement.”
The report is significant because few other studies have included extensive input from parents and others who see firsthand the problems with many community-based “solutions” like community integrated employment. While these services work well for higher-functioning individuals, they can be disastrous for those with more severe disabilities, including individuals who are nonverbal. In one case, someone from one of the Ohio agencies responded to the charges with, “…we can’t help everyone.”
Brewer said the failures were obvious upon reading the report. “All forms of disability were not being treated equally,” he said. Some legislators on the Ohio committee were so dismayed at what they found they discussed rebuilding the agencies with new staff.
“The families made it clear their opinions were not being considered,” Brewer added. “The P&A seemed to be supporting only transfers away from workshops to community settings.”
Brewer and legislative consultant Lynne Schlosser discussed investigating the possibility of a similar investigative committee in Missouri.
Brewer also noted he had been invited and spoken to the Board of Directors for Lafayette Industries to discuss 14(c) and the national debate. He also met with representatives of Missouri Vocational Rehabilitation to discuss RSA Grant opportunities, including SWTCIE. Several shops are sending staff to Washington D.C. for the ACCSES Conference and will take meetings with members of congress while there. Brewer and 535 Group will meet with the participants to discuss talking points and assist with scheduling.
Significant Findings
The Ohio report is important because of its recommendations, but also because of reports nationwide that family members of people with I/DD disabilities are being ignored when they report that community settings often work poorly for their adult children with disabilities. Several parents and other supporters who attended hearings last year held by the U.S. Commission on Civil Rights (USCCR) even reported finding a hostile environment that made it feel like their views were not wanted.
One of the few balanced reports to be released in recent years was a Government Accountability Office (GAO) document that found up to 97 percent of those certified for 14(c) are intellectually and developmentally disabled – not visual or hearing impairments as sometimes argued.
The Ohio committee was established by a statute that required it to examine the activities of the state’s Protection and Advocacy (P&A) system and Client Assistance Program (CAP). The statute required the joint committee to submit recommendations to the Ohio Governor, the President of the Senate, the Speaker of the House, and to the state’s Joint Medicaid Oversight Committee. The committee consisted of six members of the General Assembly, which included three members appointed by the Speaker of the House of Representatives, and three members appointed by the President of the Senate.
The Joint Committee held two hearings in late 2022 following an overview of the duties, responsibilities and authorities of Disability Rights Ohio (DRO), the state’s designated P&A system, from the organization’s executive leadership, including the executive director, board members, caregivers and individuals with disabilities. Additionally, the joint committee received testimony highlighting DRO’s legal actions, advocacy and investigations of abuse and neglect, as well as ensuring access to services and supports.
Families Speak Out
The committee also accepted testimony from families of individuals with disabilities who receive critical care and support in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF), sheltered workshops and facility-based day programs.
Despite being Ohio’s P&A and CAP, with the responsibility to protect the rights of individuals with disabilities, the testimony given by parents, guardians and family members expressed concerns over DRO’s administration of its service system. Specifically, the testimony described DRO’s excessive litigation against the state, to which families objected. It also described DRO’s efforts to promote transfers of residents out of ICFs, sheltered workshops and other facility-based day programs into community settings without regard to individual choice and parental rights. Those efforts included DRO staff meeting privately with ICF residents without their guardians or parents present to encourage them to leave their ICF placement.
Furthermore, the testimony indicated unilateral actions taken by DRO to target ICF settings, day programs and workshops, without seeking cooperation from families and ignoring families’ advocacy to preserve these settings. Witnesses stated DRO’s actions run counter to health and safety needs and disregards the informed decision-making of families. Moreover, witnesses emphasized the importance of the specialized services and expertise offered in ICFs to support individuals with complex physical, medical and/or behavioral needs.
Other Problems
The witnesses also touched on the issue of aging caregivers and the importance of families having access to intermediate care facilities to appropriately address the needs of their loved ones when they are no longer able to provide that care. In addition, witnesses stated that it is vital for policymakers to underscore and promote a multi-dimensional strategy, which includes access to ICFs, sheltered workshops, facility-based day programs and community-based residential and work settings. However, witnesses stressed that DRO takes a one-size-fits-all approach, preferring community settings to the detriment of other options. In its adherence to this approach, families are concerned that DRO acts adversely to their disabled family members’ interests who require higher levels of specialized care.
Finally, families expressed concern regarding DRO’s treatment toward guardianship. Parents and family members of adults with intellectual disabilities often serve as guardian for their adult child. These family members typically have the most intimate knowledge of their loved ones’ needs and are most motivated to ensure that the individual’s health, safety and welfare is protected. DRO’s website reflects an antagonistic attitude toward guardianship, as does DRO’s actions when it advocates against residential (ICF) and vocational service options that guardians have carefully chosen.
The opportunity to conduct oversight hearings of the state’s P&A system afforded members of the joint committee the opportunity to hear perspectives from DRO’s leadership, as well as from individuals with disabilities, family members and caregivers. Although DRO’s duties, authority, and responsibilities are outlined in a federal statute, it seemed clear from the testimony that actions of the state’s P&A lack accountability, proper coordination, engagement, notification and communication with families and caregivers, the report said.