Mental health reformers have repeated their intention to move people out of large institutions toward treatment options closer to home. But even as people have left hospitals, local resources have not kept pace. That means in North Carolina, many people with mental health disabilities live in adult care homes designed for frail elderly people. Now the U S Justice Department is investigating this situation.
He’s 27 years old, but Josh has already lived like an old man. Ten years ago, doctors diagnosed him with schizophrenia. He’s handled medication, therapy and months at a time in a state psychiatric hospital. A few years ago when the state hospital in Butner discharged Josh, he needed a place to go. He ended up living with about ninety senior citizens.
Josh: "Some of them are pretty cool. They’re like 95 years old, so they’re really interesting to listen to."
… even though many of them had dementia and Alzheimer’s. But the place… was another story.
Josh: "It sucked living there… They don’t feed you enough, they treat the people bad, the bathrooms are nasty. … they’d … they’d give you about two buffalo wings, some nasty lima beans and a fruit cup, that’s all you’d get."
Josh is a tall, thickset guy. Too little food was a problem. But mostly, Josh hated losing his autonomy.
Josh: "They wouldn’t let me have a lock on my door…I complained all the time, sometimes they don't even wake you up in the morning to give your medication. It was just... it wasn’t right."
Thousands of people with mental health disabilities like Josh’s live in adult care homes throughout this state.
Adult care homes are not nursing homes. People who live there don’t need medical care, but people live there because they do need help with some daily activities – most often, that’s managing their pills or eating regular meals. They’re really supposed to be old folks’ homes.
There are hundreds of these adult care homes in the state, housing thousands of people with severe and persistent mental illness.
There’s a federally appointed advocate for people like Josh, it’s called Disability Rights North Carolina. It’s director is Vicki Smith. She says in the absence of better choices adult care homes have become the housing of last resort in the mental health system, especially as the state has downsized its psychiatric facilities. There’s often no where else for a patient being discharged from Broughton or Cherry Hospital to go.
Vicki Smith: "So these adult care home providers, operators, many of them, many, many of them with extremely good intentions started opening their doors and accepting limited numbers of people in their facilities."
Vicki Smith says people with mental health problems end up living for long periods – sometimes years – in adult care homes. Those facilities offer little opportunity for rehabilitation into life beyond their walls– they usually don’t even teach people how to manage their own pills. Smith says that’s not in the spirit of the Americans with Disabilities Act.
But adult care homes are prevented by state law from offering rehab for mental health disabilities says Lou Wilson, who headed the state long term care association for years.
Lou Wilson: "What North Carolina has is a mental-health system of care that mental-health providers and professionals from the outside bring mental-health services to where the person lives."
Still, Wilson admits there have been problems in adult care homes. Four times in 2 years, someone in these homes violently killed another resident with mental health problems. All the victims had mental health disabilities. That’s one reason the general assembly ordered a task force to study the situation. As part of that effort, Disability Rights, an independent not-for-profit, sent a team of third-year law students to visit homes around the state and document what they found.
Merab Faulkner: "And some of those facilities we walked in and, you know, immediately you were… you heard... it's hard to explain."
One of those law students, Merab Faulkner, had a hard time handling what she witnessed.
Faulkner:"You walk in and you hear people. Yelling... or screaming... or talking... and smells were... in some of the facilities you walked in and you didn't even really want to know what it was… you would not want someone you love to be there."
In their report, the law students criticized the adult care homes, and the state’s practice of housing people with mental health disabilities in them.
Wilson: "I think the report was badly flawed…"
Lou Wilson – who still lobbies for the state long term care association - also runs several adult care homes. She admits that the quality of adult care homes varies, but she says that Disability Rights North Carolina sent its observers to 15 of the worst facilities in the state.
Wilson: "…there was no scientific data, there was no standard methodology, no trained researchers. No evidence whatsoever to support the sweeping conclusions that they made. I believe that this study was based on observations of untrained students and preconceived notions and agenda to pursue."
Even so, advocates say that since the beginning of mental health reform, the state hasn’t done enough to create housing for people with mental health disabilities. The recent task force report is the fourth report in a decade to conclude that adult care homes are – inappropriate places to house people with mental health problems.
Ira Birnam: "The Supreme Court said states have an obligation to serve people in what's called the most integrated setting... the setting that is most like the setting where people without disabilities actually live."
Ira Birnam is legal director of the Bazelon Center for Mental Health Law in Washington DC. He’s represented people with mental health problems for more than two decades – about the same stretch of time the federal Americans with Disabilities Act has been in effect.
Birnam: "What the ADA says, and the obligation it imposes on states is that they must organize their care systems in ways that offer people the opportunity to be served in the most integrated setting. One that doesn't rely on institutions, one that doesn't separate people from community life."
Birnham says that in state after state, people with disabilities let him know that they don’t want to live in places like adult care homes.
Birnam: "I don’t know anyone who’s really hankering to go into a nursing home."
Birnam says it doesn’t really matter whether adult care homes are good… or bad. He says North Carolina’s probably in violation of the law, because the state relies too much on adult care homes to house people with mental health disabilities. Vicky Smith of Disability Rights thinks so too. That’s why her organization filed a complaint with the federal Justice Department last summer, saying the state is breaking the law. In November, Justice notified the state it would investigate.
Smith: "If they find that the state is in violation then they would take them to court for violating federal law. One would hope that the state would not let it go that far."
The Justice Department just finished a similar investigation in Georgia, where, after two years of back and forth, the state settled with the federal agency. Now Justice is compelling Georgia to provide a range of housing for at least 7000 people with mental health disabilities, at a cost of more than 75-million dollars. People on all sides of the issue in North Carolina have been watching cases like this … including the governor. Her budget for this year largely spares mental health, and includes 75 million dollars for a mental health care trust fund.