NORMANDY -- Lisa Poppe's sister is a dubious statistic.
She's among more than 3,000 mentally ill adults in Missouri who have spent more than 100 days in a nursing home in the past year. Poppe's sister, Jill, isn't elderly. She doesn't have Alzheimer's or dementia. She's 50 and in a nursing home, with Medicaid picking up the expenses, because so many people in the state with mental disabilities or illness are being warehoused in nursing homes.
They are in facilities like the Normandy Nursing Center, where Jill lives, because of a "series of systematic failures of the state" of Missouri.
That's what a Department of Justice report determined this past summer, when the federal government notified Missouri that it was likely in violation of the Americans with Disabilities Act by failing to provide mentally ill people with access to services in their communities.
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"Specifically, the State fails to provide sufficient community-based services, fails to assertively engage people who have struggled with traditional services, and improperly relies on guardianship for people who have frequent hospitalizations or otherwise are not engaged in treatment," the report says. "Instead of focusing resources and attention on serving this group of people in the community, the State relies on nursing facilities as a key piece of the system for serving people with mental health disabilities."
Poppe has seen the damage the system can do as she navigates her sister's care.
Jill, who has schizophrenia, took a turn for the worse not long after her father's death in 1993. The family lived in St. Charles County, and her father was killed by a drunk driver. She landed in trouble, with some arrests. In 1999, she became a ward of the state. Her guardian put her in a nursing home.
Poppe had moved away to live her life. She went to college, got married and served in the Air Force, retiring as a major. In 2019, while in graduate school in Florida, she came home to Missouri to reconnect with her sister.
"She was in bad shape," Poppe says.
So Poppe went to court and was named her sister's guardian. Poppe planned to take her back to Florida and care for her there. But she struggled with getting the Medicaid funding transferred. And then the COVID-19 pandemic hit, complicating matters even more as many facilities stopped taking new patients.
"It truly consumed my entire life," she says.
In 2021, Poppe brought her sister back to Missouri and terminated the guardianship. The state took over again. Jill was back in a nursing home. This time, the state guardian ordered Jill to undergo extensive electroconvulsive therapy, or ECT, which sends electric currents into her brain.
Poppe said her sister started experiencing memory loss and her behavior became more aggressive. Poppe came back to Missouri and obtained guardianship again last year. She put a stop to the ECT treatments and found her sister in a nursing home in Florissant. At one point last year, Jill's behavior led to a long stay at SSM DePaul Hospital, from October 2023 until March of this year.
While Jill was at the hospital, she allegedly scratched and pulled the hair of somebody. She was charged with assault by the prosecutor in the city of Bridgeton. Poppe then started learning about another all-too-common issue in Missouri: the criminalization of mental illness.
Poppe pleaded with the prosecutor to drop the charges. Her sister was at the hospital for treatment. She needed help, not jail.
"There's nothing right about this," Poppe says.
If Jill ended up in jail, she might have been there a very long time. There are more than 300 people in Missouri jails who have been found by a judge to be mentally incompetent to stand trial. But the jails can't send them for the treatment judges are requiring because there are no beds in mental treatment facilities. It's a massive crisis in Missouri, Illinois and other states that have abandoned their responsibility to treat to people with mental illnesses.
So people waste away and get worse in jails or nursing homes, or on the streets.
"It's a huge problem," says Lindsay Ponce, an attorney with nonprofit law firm ArchCity Defenders who represented Jill in her criminal case.
The case was deferred for a year. If Jill doesn't get into trouble during that time, the case goes away.
"The intersection between the criminal justice system and people who have mental illnesses is huge," Ponce says. "It's extremely difficult to find mental health services. As a whole, we do not put enough resources into helping people with mental illness. There's nowhere for people to go."
So it is for Poppe's sister, and the thousands of people like her. She's back at a nursing home for now because Poppe's top priority is making sure her sister doesn't end up in jail.
"I feel like I have to keep my sister locked up for one year to protect her from going to jail, which would be worse," she said. "It's such a waste of taxpayers' money."
There are moments, however brief, when Poppe sees the sister she grew up with -- a smile here, a burst of lucidity there. "That's what keeps you going," she says. "They're in there somewhere."
But after decades in a system that wants people like Jill to be forgotten, those moments are rare.
The DOJ has threatened Missouri with a civil rights lawsuit if the state doesn't change a system that has replaced treatment with a lifetime sentence, shoving people with mental illnesses out of sight.
"If there was any way she could have been rehabilitated in the beginning, she might have had an opportunity to succeed," Poppe says of her sister. "But not after 20 years in this system."
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