A family wonders how a cousin “slipped through the cracks” and wound up in a state nursing facility not long after her 18th birthday; a mother wonders how she lost her daughter to the same system; and a woman in her late 50s longs to leave a state facility to see her family again.

These are among the findings of an extensive Department of Justice investigation into how three states - Missouri, Utah and Nebraska - illegally segregated people with mental health disabilities. Federal prosecutors found that the states are unnecessarily institutionalizing thousands of people in state facilities, cutting them off from family and the rest of society.

The investigations date 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, free to live within my community, free to have overnight visits with my grandchildren,” says Angela, the woman in her late 50s, in the Missouri report issued by the Department of Justice. The federal report quotes people by their first name only. “Free to not be told who I can associate with, free to not have someone place me in a nursing home and leave me, without any regard to my well-being mentally and physically, most of all just free to live my life.”

The investigations found widespread violations of the Americans with Disabilities Act (ADA), which says adults with disabilities must live in as integrated of settings as 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 bringing an end to the unnecessary segregation and isolation of people with disabilities in our country. And it's about recognizing their dignity, their autonomy and their independence."

The investigations were published around the 25th anniversary of the 1999 Olmstead vs. L.C. Supreme Court decision which upheld the principle that public entities must provide community-based services with people with disabilities to prevent segregation.

"Our work is about breathing life into the ADA's integration mandate," Clarke said. "We hope that our enforcement work sends a loud message to jurisdictions about the steps that they must take to comply with the law, and specifically to comply with the ADA."

The office of Missouri Gov. Michael L. Parson did not respond to requests for comment. The state cooperated with the Justice Department’s investigation, according to the report. 

The report from the Justice Department is one in a slew of investigations that have also gone after Utah and Nebraska for similar practices.

A federal investigation into practices in Utah found that the state is segregating people with disabilities by placing them in isolated “warehouse-like” facilities for day programs; an investigation into Nebraska’s practices found the state was also placing people with disabilities into segregated day programs and segregated living facilities.

In a statement, Utah’s Department of Health and Human Services said it’s committed to improving state treatment of people with disabilities. Nebraska’s Department of Health and Human Services said it was disappointed with the Justice Department’s "allegations,” adding that Governor Jim Pillen’s administration had already shown its commitment to improving care for people with disabilities.

'Highly restrictive and controlled' in Missouri

The 45-page Justice Department report on Missouri’s treatment of people with mental disabilities details how the state systematically funneled people into state nursing facilities, despite the fact that almost none needed even short-term stays.

The facilities come with skilled caregivers and are commonly known as nursing homes. But more than half of the people covered in the report were under 65 and didn’t require the care offered. The people covered in the report had been inside them for at least three years on average, and around half were clustered at just 39 of the state’s 500 nursing facilities. 

The people interviewed in the report describe prison-like conditions at the facilities. 

“They are highly restrictive and controlled settings that isolate and segregate residents by severely limiting or entirely cutting off their relationships with loved ones and their community,” the report says, “preventing them from interacting with non-disabled people.”

The isolation inhibits residents from pursuing work or an education, which the report called “hallmarks of a segregated institution.”

“My son had a life before they took him there and now, he has nothing,” the mother of a man named Kelvin is quoted in the report as saying.

The Justice Department investigation was based on reviewing state documents, data and interviews with dozens of state officials and county officials who are appointed guardians for people with disabilities, plus 130 interviews with people directly impacted by the state’s practices. Investigators inspected over 60 sites, including psychiatric hospitals and sites housing people with mental health disabilities.

Rules, according to people who described the facilities as like jail, included no telephone use, mail, freedom to leave and just one hour outside per day.

How do people end up there?

Federal officials found Missouri relies on state institutions more than almost any other state. Nearly 3,300 people without Alzheimer’s or dementia have been in such institutions for over 100 days as of March 2023, according to the report. They hold an average of 95 residents but range in size from 47 to 225 people.

Missouri places people with bipolar disorder or schizophrenia in its facilities at one of the highest rates in the country. At 10 of the 39 facilities, adults with either bipolar or schizophrenia diagnoses account for 82 to 90% of the population in 2021.

The people covered in the report have “low care needs.” Nationally, low-care residents account for 9% of people in nursing facilities; in Missouri, they account for 25%. The rate of people under 65 is more than twice the national rate of 18%. 

The report attributed the widespread practice to the state’s court-appointed guardianship system, which it called a “pipeline to a nursing facility.” The pattern in Missouri is that people with mental health disabilities cycle in and out of psychiatric hospitals; they get assigned a guardian, either family or a public administrator, because they’re found to be unable to care for themselves; and then, frequently, the guardian places the person in state facilities.

Thousands have ended up in nursing facilities as a result of guardianship. One unnamed person cited in the report called the court-mandated oversight a “sentence to be locked in a [nursing facility].”

Guardians are also allowed to set limits beyond those set by the actual facilities.

“Prisoners have more rights than a person under guardianship has,” said a resident named Angela. “Anything I do or have pleasure in, like smoking, can be taken away [at] the whim of my guardian.”

Alternatives to institutions

The people in Missouri institutions instead need community-based services, according to the report, which allow them to live in their communities in compliance with the Americans with Disabilities Act. All are offered in the Midwestern state but not widely. 

The alternatives, the report says, include: 

• Assertive Community Treatment: an evidence-based model where people with mental health disabilities are treated by people trained in psychiatry, social work, nursing and other fields.
• Permanent Supportive Housing: another evidence-based model where the person with a disability is limited to spending up to 30% of their income on rent for housing that’s in a community or building not reserved for people with disabilities. 
• Peer Support Service: A type of mental health care provided by people with experience with mental health issues. 
• Mobile crisis services: Mental health providers respond to mental health emergencies like 911 with the aim of diverting people from psychiatric hospitalization.
• Crisis Stabilization Services: These community settings serve as an alternative to emergency rooms for people experiencing mental health crises and aim to connect them to lasting care. 

Utah investigation

The Justice Department found Utah was “segregating” people with disabilities, a clear violation of the Americans with Disabilities Act. 

The federal investigators found the state has a practice of funneling people with disabilities into programs in “warehouse-like” settings in isolation from people without disabilities. In such settings, they aren't allowed to choose how to spend their time and cannot partake in typical community activities, including shopping, exercising, or meeting friends.

At the warehouses, they perform repetitive tasks like sorting through recycling, shredding paper or folding laundry, often for less than minimum wage, the report says. The programs tend to target young people with disabilities who are transitioning out of school.

The report found the wait for state vocational programs providing long-term job support for people with disabilities is over five years long. 

The Utah investigation began in March 2021 and was published this week. 

Joe Dougherty, a spokesperson for the state’s Department of Health and Human Services, issued a statement in response. 

“While nobody likes hearing that their programs still have barriers for people to receive services, the state of Utah sees people with disabilities as critical citizens in our state and is committed to improving our service system,” he said. “The benefit is reciprocal, as people in the community benefit from the talents, perspectives and experiences of people with disabilities.”

Nebraska pushes back

The Justice Department’s investigation in Nebraska focused on people with serious mental illness. It found the state was also funneling people into segregated day programs and living facilities, rather than programs aimed at promoting integration.

State law, according to the report, mandates there be enough community-based programs to ensure people with mental illness can work and live independently. But around 5,000 people live in nursing facilities, many exclusively for people with disabilities.

Nebraska’s Department of Health and Human Services pushed back against what it called “allegations.”

Spokesperson Jeff Powell touted the creation of Certified Community Behavioral Health Clinics where anyone can get mental health care; the development of better programs to help people get disability accommodations; and the fact that it already offered employment and supportive housing programs.

“Pointedly, the DOJ concedes that the programs desired by the federal government already exist in Nebraska today,” Powell said. “DHHS intends to resolve this matter as expeditiously as possible and in a manner consistent with law and the best interests of the people of Nebraska.”