For years Missouri has placed a higher portion of adults with mental health disabilities in nursing facilities than “all but a few states,” according to the report.

As of March 2023, there were 3,289 adults with mental health disabilities who had spent at least 100 days in Missouri’s nursing homes, according to the report. That number excludes those with Alzheimer’s and dementia.

Most don’t fit the profile one might imagine. 

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Around half are under 65, and some are in their 20s. Most don’t need help with basic physical activities like eating, transferring to bed or going to the bathroom. 

And once placed in a nursing home, adults with mental health disabilities are often stuck, staying for an average of at least three years. 

“We found that almost none of the adults with mental health disabilities living in nursing facilities in Missouri need to be in these institutions, even for short-term stays,” the report found.

Most, the report found, are there against their will and end up in nursing homes out of a series of Missouri’s “deliberate policy choices.” 

Those sent to nursing homes are often resistant to treatment and cycled in and out of psychiatric hospitals. 

The major problems are that the state doesn’t provide sufficient community-based mental health services and “improperly relies” on guardianship for those who have resisted treatment. Appointed guardians often place the person in nursing facilities.

One woman in her late 50s interviewed in the report, who was placed in a nursing home by a guardian, is quoted as saying, “I have a dream that one day I will be free” — to live in her community, have overnight stays with her grandkids, and be “free to not have someone place me in a nursing home and leave me, without any regard to my well-being, mentally and physically.”

A mother is quoted as saying her son “had a life before they took him there and now, he has nothing.” He lives in a locked unit of the facility.

These adults are largely concentrated in a few dozen facilities across the state. In some facilities, over 80% of the residents have bipolar disorder or schizophrenia. And those facilities generally offer little by way of mental health services beyond medication. 

The Americans with Disabilities Act requires states make reasonable modifications to allow adults with mental health disabilities to live in a setting that is the most integrated with the community as possible. The state can’t discriminate through what amounts to segregation of those with disabilities.

The state will need to work with the DOJ to come up with a plan to fix the violations identified in the report. If they can’t reach a resolution, the state could be sued by the DOJ.

The relevant state agencies told The Independent they are currently reviewing the report. The Department of Mental Health oversees the state’s mental health services, the Department of Health Senior Services oversees nursing homes and the Department of Social Services runs Medicaid, which funds eligible nursing home stays and community-based services.

‘Sent out of sight and out of mind’

Many of those adults with mental health disabilities in nursing homes are under court-ordered guardianship, the report states.

The state has relied on guardianship when people resist mental health treatment, which the DOJ found serves as a “pipeline to unnecessary institutionalization.” 

According to the report, one provider called guardianship in Missouri a “sentence to be locked in a [nursing facility].”

Guardianship is supposed to be used in extreme cases when a person lacks capacity to make basic decisions and no less-restrictive options exist, but in Missouri it is used more broadly, the report states, and frequently is used when a person with mental health disability is not engaging in treatment.

“Combining guardianships and nursing facility placement creates the functional equivalent of involuntary and indefinite commitment,” the report states.

Guardians are often public administrators, meaning county officials who are appointed when no adult relative is available or suitable. Many have heavy caseloads and place the person in a nursing home because they have limited resources and are trying to ensure safety, according to the report.

“Instead of diverting people with mental health disabilities from unnecessary nursing facility admission or transitioning people from nursing facilities who do not need to be there,” the report states, “people are sent out of sight and out of mind.”

One man, in his late 20s, has goals well-suited to intensive community-based mental health services: He “wants to work part time at a fast food restaurant and live in his own apartment or trailer around Kansas City. 

“Instead, he lives in a locked nursing facility over 6 hours away,” according to the report.

That person did not receive appropriate services, the report states, which would include permanent supportive housing. He was unhoused and hospitalized several times, some of which were because he needed shelter in the cold. His caseworker recommended guardianship because they lacked access to needed services and a public administrator was appointed.

“His guardian has since placed him in three different nursing facilities.”

The report urges Missouri to prioritize community-based services, including wraparound services that provide assistance with housing, treatment and other needs, directly to the person’s home and community.

“The fact that some of these changes might result in short-term increases in spending does not render them unreasonable,” the report states.

Housed in jails

Beyond the issues laid out in the DOJ report, Missouri has been struggling with housing those with mental illness in another inappropriate setting: jails.

Missourians who are arrested, deemed unfit to stand trial and ordered into mental health treatment are now detained in jail for an average of eleven months before being transferred to a mental health facility.

There are currently 312 people in jails waiting to be moved to psychiatric hospitals, according to data provided to The Independent last week by the Missouri Department of Mental Health.

Debra Walker, a spokesperson for the department, said in an email last week to The Independent that the reason the number seems to keep going up is due to a workforce shortage.

“People in need of mental health care or substance use treatment are unable to access it in a timely manner due to provider shortages,” she said.

The state’s years-long struggle to transfer people from jails into mental hospitals stems, in part, from a lack of hospital beds and an increase in referrals. Patients are supposed to be moved to receive rehabilitative mental health services that allow them to become competent to stand trial, a process called competency restoration. Instead, they languish in jails — often solitary confinement — without having been found guilty of any crime.

Missouri this year passed a law to bring treatment to the jails — “jail-based competency restoration” — which Department of Mental Health officials said will reduce the wait time.

The hiring of staff has begun, Walker said, and training will start soon as jail contracts are “being finalized.”

UPDATE: This story was updated at 7:36 A.M. with comment from the state that the DOJ report is currently under review.