Last week, a group of Democrat state legislators and disability rights advocates denounced a memo released last month by the Office of Legal Counsel (OLC), an office of the Federal Department of Justice (DOJ), who determined that states are not required “to treat mentally disabled patients in the most integrated setting appropriate to their needs.”
“We are under a great threat of going backwards in time and possibly once again being forced into nursing homes and institutions,” said Joe Stone, a quadriplegic disability rights advocate, on behalf of CT ADAPT, the state’s chapter of a national disability rights organization.
The target of the group’s admonishment was a legal memorandum released by the OLC on June 18, in which the OLC offered its own interpretation of Olmstead v. L.C., a landmark Supreme Court decision issued in 1999. The Olmstead decision determined that the continued institutionalization of mentally disabled patients who have been cleared for community living by medical professionals constitutes discrimination. Per the DOJ’s Civil Rights Division’s own website, the ruling cemented the “integration mandate” enacted by Title II of the Americans with Disabilities Act.
“In a 1999 case called Olmstead v. L.C., the Supreme Court wrote that the unnecessary segregation of people with disabilities is a form of discrimination,” reads the website. “The Court said that a person with a disability must be served in the community when: community-based services are appropriate to the person’s needs; the person does not oppose community-based services; and the state or local government entity can reasonably modify its programs and services to provide services in the community.”
Since the Olmstead ruling, state officials have widely operated on the understanding that those with disabilities or psychiatric illnesses must be treated in the least restrictive care setting, prioritizing community-based or at-home treatment models instead of institutions whenever possible.
In its June 18 memo, the OLR diverges from the Supreme Court’s long-held interpretation of the ruling, stating that “neither section 504 of the Rehabilitation Act nor Title II” of the ADA “imposed an integration mandate on states… nor does either statute authorize the responsible Executive Branch agencies to impose such a mandate.” OLR officials argued that such mandates “would raise serious questions regarding the scope of Congress’s power under the Fourteenth Amendment, the Interstate Commerce Clause, and the Spending Clause.” Stephen Miller, the White House’s Deputy Chief of Staff and Homeland Security advisor, was reportedly the “driving force” behind OLR’s issuance of the memo.
Rep. Sarah Keitt (D-Fairfield) called the memo a “disturbing attack” on disabled people’s civil and human rights. Keitt, who herself has multiple sclerosis and uses a wheelchair, said the Olmstead decision “puts the teeth” in the ADA. She listed off the various programs which followed as a result of Olmstead’s precedent: Money Follows the Person, a federal pilot program that Connecticut has opted into which allows Medicaid recipients to use funds to transition from long-term care facilities to at-home care or independent living facilities, Home and Community-Based Service Waivers, which fund in-home medical care and therapy, and the Community First Choice programs, which allows disabled people or their caregivers to hire and manage their own at-home care providers. These programs “allow people with disabilities to live a dignified life and live to their fullest potential,” said Keitt.
“The memo opines that states are not required to provide these programs and services, and what that means is that it will be left up to the states to decide whether or not people with disabilities have the right to be full members of their communities,” said Keitt. “Here in Connecticut, we must do better. We must not go back to a time when people with disabilities were thrown into institutions where they suffered from severe neglect, abuse, a total lack of autonomy, and were stripped of basic human rights.”
Keitt was one of several lawmakers who spoke out against the memo and shared a commitment to protect the state’s continued implementation of Olmstead’s integration mandate. She was joined by Reps. Jane Garibay (D-Windsor), Kevin Brown (D-Vernon), Mike Demicco (D-Farmington), and State Senator Matt Lesser (D-Middletown).
Lesser authored SB 430, a bill that codified the federal ADA’s integration mandate into state law. It was passed by the General Assembly in May and signed into law as Public Act 26-150 by Gov. Ned Lamont in June. He thought the bill was necessary because the memo was “just the latest in a string of attacks on people with disabilities,” citing the OBBBA’s cuts to Medicaid as an example. Lesser said that after speaking with disability rights stakeholders, it became “really clear” that the state should codify the integration mandate.
“We were reliant on the federal government to do its job and to protect us in Connecticut, and they deserve a lot, but not our trust, and so we needed to make sure that we were protecting that integration mandate because we didn’t know what was coming down the pipe,” said Lesser. “Connecticut has the power to protect our residents, to stand in the gap, to make sure that if you are a person with disabilities, that we are protecting you, providing you with the full range of legal protections that you need — to live life with dignity, with justice, living your dreams, — and we are able to provide those protections when we prioritize them.”
Cathy Ludlum, a disability rights advocate who herself is disabled, shared her experiences as a recipient of community-based care and recounted the history of Connecticut’s shift to community-based care over the past 20 years.
“In my twenties, the idea of experts was that I stay at home with my mother until she could no longer care for me,” said Ludlum. “Unwilling to go that route, I have been living on my own with support for 34 years. I have been working, participating in my community, enjoying activities with friends and family, and otherwise having a good life in spite of the severity of my disability.”
In 1999, Darlene O’Connor, then-director of integrated care for the state’s Department of Social Services (DSS), invited Ludlum to help draft the state’s compliance plan for the Olmstead ruling. Since then, Ludlum said the state has shifted “the vast majority” of Medicaid funding from institutions to community-based care programs, showing a “dedication to bringing people back to their communities.” She commended the state’s passage of Public Act 26-150, saying it “should protect community living in Connecticut, no matter what happens at the federal level.”
“But we must remain vigilant,” said Ludlum. “Harmful attitudes could seep into our state in the future. Attitudes that people in need of long-term services are safer or less expensive to support in institutions, despite all the evidence to the contrary.”
Other disabled speakers shared their own experiences of being held in institutions against their will. Karen Healy was institutionalized for “about 24 and-a-half years” for psychiatric illness. Originally from Poughkeepsie, NY, Healy has been a Connecticut resident since her release from Connecticut Valley Hospital (CVH) in Middletown. Since her release, she has benefited from at-home staff to assist her, whom she called “my family.”
“I remember at sixteen-and-a-half years old, having ECT treatments, that are not like they are now,” said Healy. “I remember sitting in a geri chair [geriatric chair], in front of the nurses’ station with a bib, drooling and having diapers on me.”
She described her time in CVH as being “like hell,” and said nobody should “ever be kept there.” Healy said her self-harm and depression were only accelerated by the conditions of her confinement at CVH.
“I don’t think people know, it has gated screen windows and there’s a skeleton key that opens those doors and those windows,” said Healy. “I couldn’t even have a picture or stuffed animal.”
Sandra Roberts, another advocate, lived for two years at a nursing home in Granby. She admitted herself because she needed to get her diabetes managed before she could receive back surgery. While she hoped the stay would be short-term, she had trouble finding affordable housing and had to “fight” for eligibility for the Money Follows the Person program.
“I say this as a warning because this really could happen to anyone,” said Roberts. “Without Olmstead, I fear that I would still be in the nursing home.”
Roberts described the nursing home as being “challenging” for both the staff and patients, and was set up for “CNAs to be overwhelmed.” She said it “all takes a toll on you mentally,” and that she felt guilty having left her roommate behind, knowing how difficult an experience it is.
“It’s very challenging, so I really hope Olmstead stays in existence,” said Roberts. “We really have to fight to keep it in place, because I don’t want anybody to go through that if they don’t have to.”
While Olmstead has been foundational to changing the country’s treatment of disabled people, Rep. Brown, a high school teacher, highlighted Olmstead’s equal importance in ensuring that students with special needs receive equivalent education in public schools, integrated with their abled peers. Brown said he has taught “countless students” with special needs, and “while they might have faced specific challenges in the classroom,” they “all brought value to our school community, and they all have the potential to live those full and meaningful lives.”
“In schools when I was growing up, in the 80s and 90s, it was self-contained classrooms for people with disabilities,” said Brown. “It gave the impression that they were different, less than, and that we should kind of be in fear of them. And boy, was I wrong, and I’m so glad to have been proven wrong about that.”
While advocates and lawmakers alike praised the state’s codification of the ADA’s integration mandate, they also shared their belief that Connecticut’s lawmakers and advocates should continue to fight for the rights of other disabled people across the country.
“We have to remain eternally vigilant, so that protection is given to all people in the United States of America, not just those of us who are fortunate enough to live here in Connecticut,” said Demicco. “So stay vigilant, stay loud. Make sure you tell your senators and your representatives and the governor, that we are not going back. We are not turning back the clock. I don’t care what they propose in Washington. Here in Connecticut, we’re not turning back the clock.”
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