This OpEd originally was published in the Providence Journal on July 13, 2024.
By: John Susa, Parent, and Kevin Nerney, Executive Director RI Developmental Disabilities Council
Rhode Islanders with disabilities deserve control over their own lives and real access to their communities. Development and adherence to an Olmstead plan, directed by people with disabilities, their families, and advocates is the best way to reach this goal.
Olmstead v. L.C (1999), was a landmark U.S. Supreme Court case decided in favor of two plaintiffs who wanted to improve their lives by seeking the necessary supports to live outside an institution. This decision confirmed that the U.S. was ready to turn to a better way of supporting its most vulnerable citizens based on their specific needs and circumstances. The Olmstead decision reaffirmed the basic right to personal freedom for all citizens. It both guides governmental support to, and reaffirms the right to liberty of, individuals with disabilities.
Everyone stands at the precipice of potential disability because of accidents, health crisis, or advancing age. An Olmstead plan will affect us all in different and important ways, with an emphasis on personal choice and individualization of supports throughout the human service system.
The Americans with Disabilities Act (ADA) requires government services be provided to individuals with disabilities in the most integrated setting possible. In 2014, the Department of Justice found several instances in which service provisions to individuals with intellectual and developmental disabilities were found to be excessively segregated, keeping individuals with disabilities for long periods in environments where they had no opportunity to experience normal community life or personal choice and liberty.
Recently, the US Attorney for Rhode Island noted that children with disabilities in the care of the Department of Children, Youth and Families are being excessively held in the most restrictive setting of a psychiatric hospital. The absence of a cogent and reasonable Olmstead Plan places the state in jeopardy of another federal action because of this violation.
The Supreme Court urged states to develop and expedite plans to transform the site-based services for persons with disabilities into services that are primarily community-based. In the view of most individuals with disabilities, their families, their professional service providers, and advocates, “community-based” now means individuals can interact personally with all members of their community during the routine activities of daily life. Unfortunately, those options are still limited in RI, resulting in unnecessary segregation.
The Olmstead planning process must be guided by individuals and their family members who have lived experience. All progress toward liberty and inclusion has come as a direct result of their advocacy for change. Our state must not proceed with only policymakers from various levels of state government.
An Olmstead Plan on paper is not the end goal. It should stimulate the ongoing transformation of human service support systems in ways that are consistent with the principles of the Olmsted decision and the ADA. Thus, we invite all Rhode Islanders to attend to this process, which affects many of their neighbors and maybe, eventually, even themselves. Meaningful inclusion and personal choice will only evolve through vigilance over planned improvements. Thus, the specific direction of the US Supreme Court a quarter century ago that all states, including Rhode Island, plan for fundamental change will finally come to pass.
Personal liberties lie at the heart of the Olmstead decision. Facilitating that standard should be the overriding goal of the RI Olmstead Plan. The Olmstead plan must promote more inclusive community service provision for every citizen who seeks those options. Now is the time to write, implement, and monitor an Olmstead plan.