“The past and future of deinstitutionalization litigation”

In a new law review article, University of Michigan Law School professor Samuel Bagenstos analyzes the implications and consequences of the decades-long shift in deinstitutionalization litigation from a reliance on due process theories to the ADA-inspired equal protection framework.

Michigan Law Library
Michigan Law Library

As Bagenstos sees it, this shift has had the effect of both equipping advocates with a far more effective set of legal tools, while, ironically, creating new disruptions in the political alliance that was essential to fostering the deinstitutionalization movement.

Early lawsuits challenging placement of people with disabilities in institutions focused on how these facilities curtailed these individuals’ civil rights. These lawsuits galvanized advocates ranging from civil libertarians, who saw institutions as de facto prisons, and fiscal conservatives, who viewed institutions as economically burdensome. In opposition stood many parent’s organizations, who feared an expanded role of the legal system into their decision-making authority, and labor unions, who feared the loss of jobs from the closing of the institutions.

While these lawsuits were essential in the ushering of hundreds of thousands of individuals out of institutions, they did little to incentivize states to prove appropriate resources to help people with disabilities adapt to their new surroundings.

Recognizing these limitations, lawyers began focusing on anti-discrimination theories, which highlighted the stark differences between the services states provide to people with and without disabilities. This shift was reflected in the enactment of the Americans with Disabilities Act and the Supreme Court’s 1999 Olmstead decision, which affirmed the ADA requirement that states provide services so people with disabilities can integrate into the communities around them.

“Unlike the due process doctrines, Olmstead does not incentivize states to turn people out of institutions and onto the streets,” Bagenstos states. “It incentivizes states to provide the array of services people need to thrive in the community- at least so long as a state remains enrolled in Medicaid, which requires states to pay for nursing home and other institutionalized placements for those individuals.”

In regard to the politics, many parent’s organizations and labor unions continue to oppose many deinstitutionalization efforts. However, this shift has also jeopardized the disability rights community’s alliance with fiscal conservatives, many of whom oppose the increased social spending necessary to promote the future goals of the deinstitutionalization movement.

“Deinstitutionalization advocates are focused to a greater extent than ever on the goal of building up a robust community-based treatment system. And they are employing the most powerful legal tool they have ever possessed to achieve that goal,” Bagenstos states. “But the political partners who helped them achieve their great success in the first wave of deinstitutionalizaton will likely be the biggest obstacle to success in the next wave.”

4 responses to ““The past and future of deinstitutionalization litigation”

  1. Finally an intelligent analysis of a complex issue. The huge disparities of available resources, choice and quality of life for those with more severe disabilities vs those with milder disabilities is also significant. This clash is often the driver in these polarities but rarely acknowledged. You are more apt to want to “combat” a developmental disability that is causing your child to bang his head on concrete. What’s instinctive protection becomes an insult to another more mildly effected and concerned more about self-esteem than skull fracture. These parties with seemingly similar interests will soon be at odds over the course of how to address their need.

  2. A continuum of care is the only way that we will be able to safely care for our community members based on their support needs. Denying those with higher support needs access to the supportive community of the ICF/ID is in direct conflict with Olmstead and the US DD Act.

    It may be best to look at what setting decrease crisis, ER visits and hospitalizations. I would think that an environment which provides safety, stability and is sustainable may be the best option. Many times this is based on the support needs of the individual.

  3. As an advocate for people with DD/ID it is most apparent to me and many of my colleagues that a continuum of service is needed, including the betterment of community based services and the need for state operated facilities. People’s needs very from the simplest to the most intense. Therefore, we must support all types of residency and all types of care. Focusing on community only has disastrous outcomes for some.

    Action DD is a non-profit corporation licensed in Washington State.

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