Institutional-type Housing for People with Mental Health Disabilities
Thousands of people with mental health disabilities live in large adult care homes and in smaller family care homes in North Carolina. Advocates argue that many of these facilities are too institutional to truly help their residents integrate into the community. Now the federal government is investigating the state. Justice Department attorneys contend the state’s reliance on such facilities to house people with mental illness could violate federal law and Supreme Court rulings.
After two decades in a place she loves, Joanne Howell is a contented woman. Her bedroom is small… tidy. The bed holds six stuffed animals that sleep with her. During the day, she carefully arranges them on a puffy pink quilt.
Joanne Howell: "This is little Dixie right here, she’s the momma … the momma of them. Kiss… She’s my baby. I love stuffed animals…"
Howell’s blind with a mental health disability. She lives in a family care home – that’s the designation for residences that house fewer than seven people. Sarah Pickett owns the facility on Durham’s east side and runs it with her husband and daughter. The place is homey, intimate, and spotless.
Sarah Pickett: "As you can see this is the kitchen… and dining area… here’s where you do laundry."
Hoban:" You have it decorated kinda nice… who did the decoration?"
Pickett: "I did. I made all of the wreaths, I went out and bought the plaques."
The residents have come home from work, or from the local clubhouse for people with mental health disabilities. They’re getting ready for dinner.
Howell:"I love this meal right here, I love salmon cakes… Mmmm."
Pickett has operated the place for 22 years. Howell has been there 20. The 'new’ guy has lived there for five. Pickett says her family breaks even when they have six residents. But they’ve housed only five for more than a year.
Pickett:"You know the hospital sends out faxes with people that they anticipate releasing. There are some that I call, and they’ve already made commitments to elsewhere … So you know, maybe… that wasn’t the one for us. So, we’ll just wait..."
This family care home is the kind of place you'd want for your relative... if living in a home like this was the only choice. Pickett is careful not to malign her peers, but she knows her place is…different than the grim settings many people think of when they hear the word “institution.” She knows… she’s been to other facilities.
Pickett:" I tell you, the ones that I did go in, I just… I just didn't understand how they could operate like that... I think some people got into the business because they thought they would make a lot of money. You know? But if you give the care that you’re supposed to give, your bottom line is not going to be the way you think it's going to be. You know, some people skimp... I am not going to do that."
Some family care homes in this state cater especially to people with mental health and developmental disabilities – but not all of them are as comfortable as Pickett’s. Joanne Howell, the woman we met at the beginning of this story, hears from her friends at the clubhouse
Howell:" Oh Gosh. Every day… "
Hoban : "What kinds of things do they say. "
Howell: "Some of them say, some of them tell me they don’t get enough to eat."
Around 7000 people with mental health disabilities around the state live in family and adult care homes. The main difference with the facilities is size.
Both provide residents with meals and medications, but they don’t provide mental health services. And no matter how comfortable adult or family care homes may be, most don’t train their occupants to lead independent lives.
Ira Birnam: "I think one of the things that occurred over time is that people with disabilities have demonstrated their capacities in ways that have surprised us."
Ira Birnam heads the legal team at the Bazelon Center for Mental Health Law in Washington DC. For decades he’s represented people with mental health disabilities. Birnam says while some people might need to live in a group setting…
Birnam: "There are tens of thousands of people throughout the United States with very serious disabilities who live in their own apartments with supports."
Birnam says one of the biggest obstacles to people with mental health disabilities realizing their abilities lies in the outdated attitudes of lawmakers, care providers and sometimes even advocates.
Birnam: "First we couldn't imagine people living outside the hospital and they were put into other kinds of community institutions. And then we couldn't imagine them living in group homes… and I think, maybe 15 years ago, 20 years ago we couldn't imagine people living on their own … with someone coming to their house as needed."
Josh, who lives in Chapel Hill, is a 27-year-old with schizophrenia. For a year of his short life, he lived in an adult care home. Now he’s in a group home where he’s much happier… and learning the skills he’ll need to become independent.
Josh: "At the group home everyone takes turns cooking. There's about six of us so we all pick and night and they will teach us how to cook, French toast, stir-fry..."
Hoban: "What do you like to cook?"
Josh: "Hamburger helper"
Hoban: "What other things if they taught you at the group home? "
Josh: "We each have a chore to do every night. We clean the bathrooms or clean the kitchen"
Josh has learned to manage his daily medications. He’s gotten his GED. And he’s making plans to become an electrician. All since he moved into the group home
Josh:" There are some resources that I have been looking into for people with schizophrenia... you can go to vocational rehab… they’ll pay for college."
Some individual adult care homes or family care homes might be decent places to live, but they’re more institutional than what’s in the spirit of federal laws and Supreme Court rulings. Ira Birnam from the Bazelon center says that in state after state, he hears from people with disabilities that they really don’t want to live in restrictive settings. And they don’t have to.
Birnam: "People go there when they think they must because there's no alternatives available."
That’s been the case in North Carolina. Charlotte-based social worker Mike Weaver tries to find suitable housing for people with disabilities. His older sister had schizophrenia and bi-polar disorder. She lived in adult care homes for 14 years and continually complained… to him. Weaver says there's a very powerful factor ... fear… that keeps many people with mental illness in adult care homes
Mike Weaver: "My sister even though she knew I was connected at the state level and nationally, I knew the executive director of the provider agency that she was getting service from. I told her, you make a complaint at your level and if you don’t get the right response, I will go to bat for you. But she wouldn't do it. Because… she was always afraid that she was going to get thrown out."
For the same reason, well-meaning families often encourage residents not to make waves. Weaver says that his sister tried living with family…
Weaver: "She stayed with my brother for a while, that created lots of problems... and… and my brother was a constant source of support to her, but at times she disrupted everyone's lives…"
Weaver’s sister eventually spent the last seven years of her life in her own apartment.
Weaver: "There was an apartment manager who gave minimal care... You know, you got something wrong with your sink, that sort of thing. She had a mental health provider come in occasionally and of course she went in and saw her psychiatrist... and so she was much happier in that situation."
Instances like this one are why the federally funded non-profit Disability Rights North Carolina filed a complaint with the federal Justice Department last summer. It alleged the state improperly relies on these homes to house people with mental health disabilities. Attorney Ira Birnam from the Bazelon Center explains it doesn’t matter if the adult care homes are allegedly good… or bad. What matters is that they’re not homes, and lack real independence for residents. Lou Wilson, long time head of the long term care association, takes issue with the Disability Rights complaint. She maintains that activists harbor an ulterior motive.
Lou Wilson: "I believe that Disability Rights has used adult care homes as scapegoats to go after their real agenda… "
Hoban: "Which you see as…"
Wilson: "Which I see as to support the notion that home care agencies provide all mentally ill people one-on-one services no matter the cost to the taxpayer."
That approach has been shown to save money. In states like Minnesota and Tennessee, programs to house even the most chronically mentally ill homeless people have kept many of them out of state hospitals – and have saved money. And those states are seeing a lower demand for what mental health hospital beds remain.