A family wonders how their cousin “slipped through the cracks” and ended up in a state nursing home not long after her 18th birthday, a mother wonders why she lost her daughter to the same system, and a woman in her late 50s longs to leave a state institution and reunite with her family.
These are some of the findings of a broad Department of Justice investigation into the illegal segregation of mentally ill people in Missouri, Utah and Nebraska. Federal prosecutors found that the states unnecessarily housed thousands of people in state facilities, separating them from their families and the wider community.
The investigation dates back to March 2021 based on numerous complaints.
“I have a dream that one day I will be free — free to live on my own terms, free to live in my community, free to visit my grandchildren at night,” Angela, a woman in her late 50s, said in a Missouri report issued by the Department of Justice, who was quoted in the federal report by only her first name. “Freedom to not be told who I can associate with, freedom to not be abandoned in a nursing home with no regard for my mental or physical health, and above all, freedom to live my own life as I please.”
The investigation found widespread violations of the Americans with Disabilities Act, which says adults with disabilities must live in integrated environments whenever possible.
“This is about weaving people with disabilities into the tapestry of American life,” Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division told USA Today. “This is about ending the unnecessary segregation and isolation of people with disabilities in our country. And this is about recognizing their dignity, autonomy and independence.”
The study was released to mark the 25th anniversary of the 1999 Supreme Court decision Olmstead v. LC, which upheld the principle that public agencies must provide community-based services to prevent segregation of people with disabilities.
“Our job is to breathe life into the ADA’s integration mandate,” Clark said, “and we hope that our enforcement actions will send a clear message to jurisdictions about the steps they must take to comply with the law, and in particular the ADA.”
Missouri Gov. Michael L. Parson’s office did not respond to a request for comment, but the state reportedly cooperated with the Justice Department’s investigation.
The Justice Department report is one in a series that also targets the states of Utah and Nebraska for similar practices.
A federal investigation into Utah practices found that the state segregates people with disabilities by placing them in segregated “warehouse-like” facilities for day programs. A federal investigation into Nebraska practices also found that the state places people with disabilities in segregated day programs and segregated living facilities.
The Utah Department of Health and Human Services said in a statement that it is working to improve the state’s treatment of people with disabilities. The Nebraska Department of Health and Human Services said it was disappointed by the Justice Department’s “allegations,” adding that Gov. Jim Pillen’s administration is already working to improve care for people with disabilities.
In Missouri, it’s “very restrictive and controlled.”
A 45-page Justice Department report on Missouri’s treatment of mentally ill people detailed how the state systematically funneled people into state nursing homes, even though most of them didn’t even need short-term stays.
These facilities are staffed with skilled caregivers and are commonly known as nursing homes, but more than half of the people in the report were under age 65 and did not need the care they provided. On average, people in the report had been in these facilities for at least three years, and about half were concentrated in just 39 of the state’s 500 nursing homes.
People interviewed in the report described prison-like conditions inside the facilities.
“These are highly restrictive and controlled environments that severely limit or completely cut off residents’ connections with loved ones and the community, isolating and isolating residents and preventing them from interacting with non-disabled people,” the report said.
Quarantine prevents residents from working or studying, something the report calls a “characteristic of quarantine facilities.”
“My son had a life before he was taken there and now he has nothing left,” the mother of the man, named Kelvin, was quoted as saying in the report.
The Justice Department’s investigation was based on state documents and data, interviews with dozens of state and county officials appointed as guardians of people with disabilities, and 130 interviews with people directly affected by the state’s practices. Investigators inspected more than 60 facilities, including psychiatric hospitals and residential facilities for the mentally ill.
Rules included no phone or mail use, no freedom to leave the house and only one hour outside per day, according to people who described the facility as like a prison.
How do people get there?
Federal officials found that Missouri relies more on state facilities than most other states. About 3,300 people who don’t have Alzheimer’s or dementia were in such facilities for more than 100 days as of March 2023, according to the report. The average number of residents is 95, but facilities range in size from 47 to 225.
Missouri has one of the highest rates of institutionalized patients with bipolar disorder or schizophrenia in the country: In 10 of the 39 facilities, adults diagnosed with bipolar disorder or schizophrenia made up 82% to 90% of the population in 2021.
The populations highlighted in the report are “low-needs” residents: Nationwide, 9% of nursing home residents are low-needs residents, but in Missouri they make up 25%. The proportion of people under 65 is more than double the national average of 18%.
The report attributes the widespread practice to the state’s court-appointed guardianship system, which it calls the “nursing home pipeline.” In Missouri, there is a pattern of mentally ill people being transferred in and out of psychiatric hospitals. They are deemed unable to care for themselves and are assigned a guardian, either a family member or a public administrator, who then often places them in a state facility.
Guardianship has resulted in thousands of people being placed in nursing homes, and one anonymous person quoted in the report called court-mandated supervision a “lock-in sentence.”
Parents can also set limits beyond those set by the actual facility.
“Prisoners have more rights than their guardians,” said a resident named Angela. “Anything I do or enjoy, like smoking, can be taken away at the whim of my guardian.”
Alternatives to the system
The report found that Missouri’s institutionalized population needs community-based services that comply with the Americans with Disabilities Act and enable them to live in the community, all of which are provided in Midwestern states, but are not widely available.
According to the report, alternatives include:
Assertive Community Treatment: An evidence-based model in which people with mental disorders are treated by people trained in fields such as psychiatry, social work, and nursing.
◾ Permanent Supportive Housing: Another evidence-based model that allows people with disabilities to pay up to 30% of their income for rent for housing in communities or buildings not specifically for people with disabilities.
◾ Peer support service: a type of mental health care provided by people with experience of mental health problems.
◾ Mobile Crisis Services: Mental health providers will respond to 911 and other mental health emergencies, aiming to divert people away from psychiatric hospitalization.
◾ Crisis stabilization services: These community settings serve as an alternative to emergency rooms for people experiencing a mental health crisis and are intended to connect them to permanent care.
Utah Survey
The Department of Justice found that Utah was “segregating” people with disabilities, a clear violation of the Americans with Disabilities Act.
Federal investigators found that states practiced funneling people with disabilities into programs that separated them from able-bodied populations in “warehouse-like” settings, where they had no choice over how they spent their time and could not participate in typical community activities, such as shopping, exercising, or meeting with friends.
The report said the workers in the warehouses perform menial tasks such as sorting recycling, shredding paper and folding laundry, often for less than minimum wage.The programs often target young people with disabilities who have just left school.
The report found that wait times for state job-training programs that provide long-term employment support to people with disabilities can be five years or longer.
The Utah investigation began in March 2021 and was made public this week.
Joe Dougherty, a spokesman for the state Department of Health and Human Services, issued a statement in response.
“No one likes to hear that their programs are still a barrier to people receiving services, but Utah considers people with disabilities to be important citizens of the state and is committed to improving our service system,” he said. “The benefits are mutual, as people in our community benefit from the talents, perspectives and experiences of people with disabilities.”
Nebraska strikes back
The Justice Department’s investigation into Nebraska focused on people with severe mental illness and found that the state was funneling them into segregated day programs and residential care facilities rather than programs meant to promote integration.
The report found that state law requires there to be enough community-based programs to help people with mental illness work and live independently, but about 5,000 people live in nursing homes, many of which are reserved for people with disabilities.
The Nebraska Department of Health and Human Services refuted what it called the “allegations.”
Spokesman Jeff Powell touted the creation of a certified community behavioral health clinic where anyone can get mental health care, developing better programs to help people with disabilities get accommodations, and the employment and supportive housing programs it already offers.
“The Department of Justice clearly acknowledges that the program the federal government desires already exists in Nebraska today,” Powell said. “The Department intends to resolve this matter as expeditiously as possible and in a manner consistent with the law and the best interests of Nebraskans.”