Mental Health Disorder

Tuesday, April 26 2011 by Alex Granados and Frank Stasio

Mentally ill residents in North Carolina don't have a lot of housing options if they can't make it on their own. There is a good chance they will end up in an adult care home. These facilities are usually reserved for the elderly, and they don’t offer mentally ill residents much in the way of services or rehabilitation. The U.S. Department of Justice is investigating North Carolina to see if its reliance on adult care homes violates the Americans with Disabilities Act. Meanwhile, next door in Tennessee, officials have found a way to provide a variety of housing options to mentally ill residents with positive results for that state's mental health system. Host Frank Stasio will talk about housing for the mentally ill with Bob Currie, director of housing and homeless services at the Office of Recovery Services in Tennessee; and WUNC Health Reporter Rose Hoban who recently completed a five-part series called “North Carolina Voices: Mental Health Disorder.”

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

How to Create Better Housing for People with Mental Health Disabilities

North Carolina Voices: Mental Health Disorder

Friday, April 22 2011 by Rose Hoban

David Brower: In the last 10 years, multiple studies have concluded that housing people with mental health disabilities in adult and family care homes is not the best plan for them. Each study has recommended phasing out use of the homes and improving the system. Despite that, the number of homes has increased along with the number of adults with mental illness who live in them.

In this final installment of North Carolina Voices - Mental Health Disorder, Rose Hoban surveys how North Carolina can address the housing needs of people with mental health disabilities, before the federal government forces the state to craft a solution.

Rose Hoban: On a sunny summer afternoon twenty one years ago, thousands of people, most of whom had disabilities, gathered on the White House lawn. They were there to watch President George H W Bush sign the Americans with Disabilities Act into law. To many people with disabilities, this is the Civil Rights Act. The president pledged as much.

President G H W Bush: I now lift my pen to sign this Americans with Disability Act and say let the shameful wall of exclusion finally come tumbling down... God bless you all...fade applause

Fast forward five years. Two women from Georgia with mental health disabilities sued their state, claiming they were being held in an institution, even though counselors believed they could live on their own. The problem was ... there wasn't any place for them to go. The Supreme Court eventually decided in their favor in 1999. For the 5-to-4 majority, Justice Ruth Bader Ginsburg wrote:

Narrator reading Ginsburg quote: "Unjustified isolation... is properly regarded as discrimination based on disability."

For people with disabilities this is Brown v. Board of Education.

After that, many states stepped up their progress toward helping people with disabilities live on their own. North Carolina’s progress has slow... at best.

Julia Adams: The idea of institutionalization in our state has been here for hundreds of years.

Julia Adams lobbies for the ARC, an agency that supports people with developmental and mental health disabilities.

Adams: It takes a long time to break that historical force. And I think that's part of it, honestly, in our state. These institutions have been here for a very long time...

That's one reason it took so long to close Raleigh's Dorothea Dix Hospital. Adams says that before lawmakers, families and everyone else can think about improving housing, they have to change the way they think about people with mental health disabilities.

Adams: And how do we now say, you know, it's not the 1800s, you know it's 2011 and people have changed, services have changed, other states have changed...

But no one in North Carolina knows who's out there, and what they need. The state doesn't keep data on people with mental health problems. Hospitals do a cursory screening for people heading out the door. And no one assesses people before they enter a home to see if it’s the right place. That frustrates local mental health service providers like Ellen Holliman, who manages the Durham Center. Durham has the greatest number of licensed beds, per capita, of any county in the state.

Ellen Holliman: When you have that many beds available, people who run these homes want to keep those beds full because that's how they, in fact, support those homes and they, you know, make their living.

Holliman's organization has no control over who's in those beds, whether an adult or family care home is a good place for them, or what services they need to stay out of the hospital. But when they fall through the cracks, her organization has to pick up the pieces.

Holliman: From my own experience in being a resident advocate, I've asked people 'Well, now, where you're from?', 'Oh, I'm from Guilford County,' 'Well how did you happen to get here?' 'Oh, my case manager found this bed.' 'Well, do you have anybody who is working with you?' 'Well, no.' 'Has anyone contacted you?' 'No.' Well they basically get stuck...

The only information on who's in adult care homes is an annual report facility managers file. It lists who's in their care and what's their major problem. That's got to change, says Pam Silberman, the head of the state's Institute of Medicine. An Institute task force concluded that the state lacks basic information.

Pam Silberman: We need to find out what services they need, while they are still in the hospital, before they are being discharged to find out whether they can be appropriately cared for in the community or whether they need to move into group home for people with mental illness or developmental disabilities. We're not doing any of that.

She adds that no one knows what housing resources are out there...

Silberman: We recommended additionally is that there should be an inventory of housing that is available for people with disabilities...

Even if adequate housing existed , the people who live in it need some help to stay there - the occasional social worker visit, job training, crisis services... All that sounds expensive, but it turns out to be cheaper than the status quo. Gregg Warren heads DHIC, a group that creates low-income housing in the Triangle. His group helped develop a 37-unit supportive housing development in Raleigh.

Gregg Warren: We had a UNC School of social work study done that tracked the specific support costs of the residents there in this community... before they moved into supportive housing, versus afterwards. And I think they found like there was a 25 percent reduction in cost to government once you got people into permanent housing. So, yeah, that's really powerful!

The Institute of Medicine task force found that independent housing with supports is 38 percent cheaper than adult care homes. That's why the task force recommended that North Carolina allow a thousand people to use all of their county-allocated money to pay for housing outside of the homes. But that‘ll require some initial money.

Connie Cochran:  States live year-to-year. Make the budget... what's it gonna cost this year...

Connie Cochran heads Easter Seals – U-C-P - it manages housing for lots of mental health consumers around the state. He says even getting a little money up front in order to save some down the road is a hard sell in a general assembly intent on cutting the budget.

Cochran: They have a hard time thinking or getting past that year-to-year and then they have a hard time dealing with constituents who are arguing because they don't see a long-term plan. ..

Leaders need information, they need that money, they need a vision and they need long term commitment. All that exists in Tennessee. That state's mental health office created close to ten-thousand housing options through Republican and Democratic governors… through economic downturns.

North Carolina has not sustained the political will to do that. Lanier Cansler is the state's Secretary of Health and Human Services. He's presided over three years of cuts to the mental health system

Cansler: I think we do have the backing at the highest level and that's one of the reasons the governor, basically protected mental health from any kinds of budget reductions in her budget proposal as well as 75 million dollars in a mental health trust fund.

The proposed state house budget would not include the governor's 75-million dollar allocation. But it'll take more than one year's budget - and more than one governor - before the state has enough housing for people with mental health problems. Ron Honberg from the National Alliance on Mental Illness in Washington DC says that in the meantime, people with disabilities and their advocates won't stop pushing. They're leery of political promises. They've heard it all before.

Ron Honberg: Economic circumstances have changed, legislative champions have left the legislature and all of a sudden, you're not getting adequate funding any more and that previous commitment to funding community services, that commitment no longer exists

While North Carolina’s commitment has waivered for a decade, states like Tennessee have charged ahead, demonstrating that change is possible, and that it doesn't cost a fortune. Tennessee's long-term commitment changed the picture for Louetta Hix of Nashville.

Louetta Hix: I know if you had told me in 1994 that I would have a full-time job someday, I would have found it hard to believe you. And if you had told me that I would ever have a home of my own that I owned, I wouldn't have believed you and it would've scared me to death. But I had other people who held hope for me.

After years lost to delusions and paranoia, Hix got help - first at a group home, then in an apartment, then at her own house. Now her job is to help other Tennesseans find their homes.

Hix: That's the thing about hope. When you can't hold it for yourself someone can hold it for you. The mental health system's responsibility is to hold hope for people who cannot hold it for themselves.

In North Carolina, the system has offered little hope for people with mental health problems to find their way home.

Rose Hoban, North Carolina Public Radio, WUNC.

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

Roadblocks for Housing for People with Mental Health Disabilities

North Carolina Voices: Mental Health Disorder

Thursday, April 21 2011 by Rose Hoban

Eric Hodge: For people with mental health disabilities, housing’s an intensely personal issue. Many want to live independently, some want to live with others. But mostly, what folks with mental health problems say they want is some choice in the matter. But housing is a political and economic issue too. Many factors prevent people with mental health disabilities from getting the housing they want… and need.

In this installment of North Carolina Voices – Mental Health Disorder, Rose Hoban examines the political forces that have kept North Carolinians with mental health disabilities from moving out on their own.

Rose Hoban: It probably wouldn’t occur to him, but Alfred Brown is in the vanguard. He’s weathered a lifetime of schizophrenia and alcohol abuse…

Alfred Brown: messed up quite a few times, drinking…

In and out of institutions…

Brown: Then they transferred me to the shelter, then I came out of the shelter…

Then to a group home. But these days Brown is sober, slimmed down and living on his own. It’s been five years since his last drink, and three since he got an apartment in Knightdale.

Brown: I mean… I know how to do everything, I know how to cook on my own, I know how to cook by watching my mother… I do a pretty good job, you know, I keep my place clean.

After his discharge from alcohol treatment, Brown got involved with Club Horizon in Knightdale – a clubhouse for adults with severe and persistent mental illness. Now he helps run the snack bar there. The social worker at Horizon helped Brown get into his subsidized apartment, affordable even with a disability check of only 674 dollars a month.

Brown: The rent is only 192, my cable is 89, and my cell phone is 40 and my insurance is… 150, no… 150? 150 every month. Then I still have like 2 or 300 left in the bank...

Brown’s lucky. He wanted his own place – and one was there.

Brown: It’s good, you know?

But for Brown – and thousands of others – it isn’t just a lack of apartments that keeps them from independence. It’s a lack of political will to get that housing built.

Verla Insko: Well, actually our adult care home industry has actually recruited mentally ill…

Representative Verla Insko co-chaired the legislative oversight committee on mental health for a decade. She says a lot of adult care home beds sat empty when the state started releasing people from psychiatric hospitals. Owners of those facilities were happy to fill up with those patients. But it’s an imperfect solution…

Insko: People with mental illness really have the capacity and the ability, they ought to be living independently if they want to be. And if they’re… if they’re stable, if they've got their medications and their managing their own illness well with supports, there's no reason why they would live in a residential facility, in a group home.

Lou Wilson: Almost 99 percent needs help with their medications.

Lou Wilson runs several of those homes. She recently retired as the head of the state’s long term care association. Wilson’s not convinced that many adult care home residents are capable of living on their own.

Wilson: And many of our consumers need help with toileting, need help with eating, need help with bathing. We care for a sick population

That population helps keep her industry healthy. In the annual statewide count last August, close to a quarter of the state’s adult care beds were empty. Remove 4 or 5 thousand people from those homes and total occupancy drops by as much as 15 percent. Some places will close.

Wilson: If the state would work with us to keep our industry stable so we could care for the ones that… that are left there, we would be willing to do that.

For years, Wilson’s lobbied for her industry. She has the ear of many lawmakers. And she argues it would be unfair to pull the rug out from under facility owners. Maybe - Wilson says – facilities would pull the rug out from under the state.

Wilson: If the state came in today and said we we’re going to move every single person... but we’ll just leave them in your facilities until we do better and we’ll just let you die a slow death. I'm not sure that our facilities would be willing to do that… They might tell them take them all in 30 days.
Hoban: That would… but that would also be a fairly disastrous economic decision.
Wilson: Well... it would be an economic decision more disastrous for the state at that point than it would for our facilities. And I have not asked our industry representatives these questions, but we certainly will be asking... do you want to just stay here and die a slow death?

But Representative Verla Insko says inevitably, the adult care industry will have to give some ground.

Insko: It is a tug-of-war, it's a balancing act. In order to get something from the industry you really have to give them something that they want. It’s a trade. You hope you're making progress, you hope you're not giving away more than you are getting, but I think that almost every bill that we put through in order to get it passed, has been a negotiation that actually benefited the industry.

In election cycles from 2000 to 2008, the long term care association donated about a quarter million dollars to members of the general assembly, including about a thousand to Insko. Combined with hard ball lobbying, Insko says that’s helped the organization get what it wants.

Lou Wilson responds her industry is one of the most heavily regulated in the state.

Wilson: We lobby hard but it doesn't mean we’re always successful.

Politics and bureaucracy also block creation of other resources for people with mental health disabilities. Former Governor Mike Easley raided a trust fund intended to create community mental health resources in 2001. The state never completely reallocated that money. And none of this even addresses the issue of state psychiatric hospitals.

Connie Cochran: We shouldn't really be rebuilding three state mental-health hospitals...

Connie Cochran heads Easter Seals/UCP. That non-profit manages housing and group homes for people with disabilities around the state. Cochran says politics – not necessity – drove the decision to build Central Regional in Butner and to rebuild Cherry and Broughton hospitals.

Cochran: You know, you have cities and towns that depended upon those institutions for jobs, just like prisons and… anything else.

 

Cansler: We have a limited number of beds in a rapidly growing state so if we were building beds based upon our growth we would be building more hospitals.

Secretary of Health and Human Services Lanier Cansler says the hospitals the state’s rebuilding are derelict and in real need of replacement.

Cansler: We are not designing hospitals to put people there and keep them forever, we are designing hospitals that require a special treatment, where we can specialize in these things particularly in the more dangerous cases.

A lot of money flows into the state through those hospitals in the form of reimbursement for care. Mental health services are ‘optional’ for states to pay for under Medicaid. So state money - not federal - pays for the bulk of mental health care. But Medicaid does pay for about a quarter of the treatment dollars in big mental health hospitals. Cochran says that plays into many states’ biases for paying for big institutions.

Cochran: Institutional bias has been driven by Medicaid and, you know, the payments the state gets off of its hospitals through Medicaid supplements... that’s the economic reality but it's not one that's worth long-term…

A monthly disability check isn’t enough to pay for an apartment. It isn’t enough to pay for an adult care home either. Those homes can bill Medicaid for medical and personal care services – and they do. The county and state can pay adult care homes hundreds, sometimes more than a thousand dollars extra in special assistance for many residents with psychiatric problems. It all adds up.

Ellen Holliman heads the Durham Center, the mental health management entity for that county. She says the special assistance money does not follow residents out into the community.

Holliman: If you wanted to move into your own apartment, you would only be able to get 75 percent of that special assistance money. Why do we do that? If we really want to support people in the least restrictive setting, why not give them all of their money? That money is going to support them in the long term care facility.

A recent state task force found it costs on average 38 percent more each year in county, state and federal dollars to pay for someone in a facility than to pay for someone to live outside an institution.

So, there’s a lot of money at stake in keeping people in adult and family care homes.

Health and Human Services Secretary Cansler says the housing issue is a tangled, long-term problem that will probably take a long time to solve.

Cansler : This is something that did not occur overnight, will not change overnight. There's not enough dollars there to go out and immediately change all that. But we do need a strategy and I think that's got to be our focus in the coming months is developing the strategy, getting the General Assembly buy in into the strategy of where do we really want North Carolina to be.

Given the money and the politics involved, no change might have happened at all… but for the U S Department of Justice. Again Connie Cochran, head of Easter Seals/UCP

Cochran: Eventually the Feds are going to say, we are not paying for this. You know, when everybody else has closed down their facilities and figured out a way to do it Feds will say, hey... fix this. Fix it now.

North Carolina is in a budget crisis. Lawmakers in Raleigh will tell you there’s no money. But that won’t matter to the federal Justice Department. It didn’t matter in other states where Justice reached settlements to make them more compliant with the law.

Rose Hoban, North Carolina Public Radio, WUNC

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

Tennessee Finds Ways To House People With Mental Health Disabilities

North Carolina Voices: Mental Health Disorder

Wednesday, April 20 2011 by Rose Hoban

Eric Hodge: Around the country, advocates have come to realize that one of the most important services for people with mental health disabilities is housing – and that most people with disabilities are able to live independently with some help. States have tried many strategies to create suitable housing options. Tennessee dedicates a small amount of state money every year to local groups that succeed pretty well.  For the third installment of North Carolina Voices, Mental Health Disorder, Rose Hoban traveled to Tennessee to examine that state’s housing program, and to see what that it might teach North Carolina.

Rose Hoban: Nashville is a big sprawling city with some old neighborhoods near the center of town. Those older areas sit along the Cumberland River. It overflowed last year in a hundred-year flood. The water inundated Clinton Toy’s house at the bottom of a small incline near the river.

Clinton Toy: I looked up front and it was coming up, coming up over those steps, and so I barely made it out…

Toy spent last fall wrangling with insurance adjusters and paperwork and contractors and tools. Now he’s home… and he’s pretty satisfied with the results.

Hoban: So… what color is this on the wall?
Toy: I forget what kind of green they call it. They can only paint one coat, according to the insurance, they can only put one coat of paint on. So I need to get me a brush and a roller, and get back behind that cabinet right there.

Toy didn’t get to start repainting his walls for a couple of months after the flood. In the rush to evacuate, he left his pills behind. Toy has a psychiatric disorder, and after a few days without medication, he landed in a state psychiatric institution. But he wanted out.

Toy: I think that having this home has helped me want to stay out of the hospital because it's been responsibility, because when I was in there, you got behind, you know, and then… that's one of the things about homeownership it gives you motivation to want to stay out of the hospital. To try to make something of your life.

Before the flood, Clinton Toy had spent five straight years out of the hospital. It was the longest he’d stayed out of since he was diagnosed with psychosis at 17. Now he’s a 41-year-old guy with a job making sandwiches and a long “to-do” list of home repairs. He’s got plans to go fishing… and no plans to return to the state institution.

Toy: Even though sometimes it's sad and hard, sometimes I think it would be easy to lay in that hospital, you know, and get free food, or whatever, but what kind of life is that, you know?

That’s the question Marie Williams started asking herself in the early 19-nineties. She was a case worker with homeless mental health patients in Memphis. Williams says she eventually realized that for most of her clients, not having a steady place to live was the biggest obstacle to getting their lives together.

Marie Williams: I would work with them at homeless shelters… and if you don't have a place to go back to, it really impacts your ability to recover. And move forward.

With that in mind, Williams earned a social work degree. Then she did a fellowship at the federal Department of Housing and Urban Development in Washington. When she returned to Nashville, she was on a mission – to help develop housing for people with mental health problems. She landed a job with the Tennessee mental health commission and got to work

Williams: We focused on Knoxville, Memphis, Nashville and Chattanooga… And we went across the state and those communities, one person working with four communities we brought in $4,920,000 and created 801 options.

That was in one year. In the subsequent decade, Williams and her team have developed a range of options - from private homes like Clinton Toy’s to clusters of apartments, to group homes. All told, the state of Tennessee has ponied up only about 25-million dollars. Williams and her people across the state use that money as leverage to raise more money so they can build and renovate more housing.

Williams: We have brought into the state 400 million dollars.

She says it came from all kinds of places... Federal home loan bank... the Tennessee Housing Development Agency,

Williams: local foundations, local banks, local banks who said we want to do something about this, Housing and Urban Development, USDA, Rural Housing Development… there are all kinds of different places where our facilitators have coalesced funding to make housing affordable for people.

And in a decade, they’ve created 98-hundred housing opportunities, around the state. Urban, rural, you name it.

Bob Kucab: Which to me, it is a staggering number for a state the size of Tennessee.

Bob Kucab heads the North Carolina Housing Finance Agency. In the same spell that Marie Williams helped develop more than 9,000-plus housing opportunities in Tennessee – a smaller state than North Carolina – Kucab figures North Carolina’s created less than a third of that number targeted for folks with mental health problems. Kucab should know… he’s got his fingers in pretty much all of the low income housing and special needs housing in North Carolina.

Kucab: I am determined to call Tennessee... and find a little more about it because we have made significant investments in this approach, and our numbers are what they are. So I would be interested to see how they could possibly produce 9,000 units. That… that’s a lot.

Tennessee is ahead on the number of units, the state is spending less to get them built – and Tennessee is seeing results. Bob Currie is Marie Williams’ right hand man. He also started out as a case worker with homeless mentally ill people and helped many of them move into independent housing. Framed photos of those houses line his office walls.

Currie talks about one pair of brothers, both mentally ill, both in and out of state institutions and living in public housing. Five years ago, he helped them cobble together the money to buy a condo – the state chipped in enough so they could pay their mortgage with their Social Security disability money.

Bob Currie: Over the course of their 30-year mortgage, the public will save $180,000 on the lack of rental subsidies being necessary for them... by investing a little bit, by investing about $30,000 to reduce their mortgage payment to where it was affordable… the public saved $180,000.

Currie says the brothers are doing really well and, for the most part, staying out of the hospital. Those kinds of successes are becoming apparent in the state’s mental health institutions. In the past two years, Tennessee has been able to close about a third of the beds in state institutions. That’s reduced costs. And in contrast to North Carolina, the beds in Tennessee’s mental health institutions are never full. That’s reduced waiting time for people who do need those beds… down to almost nothing. During the last fiscal year, Currie says about 13,500 people sought admission to a state hospital.

Currie: Of those, there were four people who had to wait more than two days. And those waited because they wanted to be admitted to the Institute, the hospital closest to their home. They could have been placed otherwise, sooner.
Hoban: So 13,500 admissions... four of them waited more than two days.
Currie: That's correct. Four people waited two days because they wanted to be close to home
Hoban: If they had been willing to go to someplace else slightly further away...
Currie: Probably would have been within 12 hours they would have a hospital bed.

Bob Currie says that’s because when Tennessee closed beds in its state institutions, the local treatment – and the housing – were in place for people who needed them… people like Clinton Toy who’s happy to be home after last year’s flood

Toy: So, I 'm just thankful to have a life, you know, a little bit of a pretty good life and … and I try to be as normal as I can. I got… I had my fishing poles behind the door.
Hoban: I saw those…
Toy: I like to fish. It always, like, cheers me up, especially if I can catch a fish… you know?

His story plays out in stark contrast to North Carolina, where psychiatric patients often wait days in local emergency rooms for a bed in one of the state institutions. And when they’re discharged from that state facility, they wind up in institutional places like adult care and family care homes…because often, that’s all there is.

Rose Hoban, North Carolina Public Radio, WUNC.

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

Institutional-type Housing for People with Mental Health Disabilities

North Carolina Voices: Mental Health Disorder

Tuesday, April 19 2011 by Rose Hoban

Eric Hodge: 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.  In today’s installment of North Carolina Voices : Mental Health Disorder, Rose Hoban looks at some of the living options available for people with mental health disabilities.

Rose Hoban: 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.

RH, North Carolina Public Radio, WUNC.

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

What Kind of Housing for People with Mental Health Problems?

North Carolina Voices: Mental Health Disorder

Monday, April 18 2011 by Rose Hoban

Eric Hodge: This week, WUNC examines a persistent problem for mentally ill people in North Carolina – housing.  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. In the first installment of our series, North Carolina Voices, Mental Health Disorder, Rose Hoban reports that it could mean big changes for North Carolina.

Rose Hoban: 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.

Rose Hoban, North Carolina Public Radio, WUNC.

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

This story is part of the North Carolina Voices series.

DOJ To Investigate Mental Health Sytem

Wednesday, November 24 2010 by Rose Hoban

The U S Department of Justice will investigate North Carolina's use of adult care homes to house patients with mental illness. Rose Hoban reports.

Rose Hoban: A report issued by Disability Rights North Carolina this summer claimed thousands of mentally ill patients were warehoused in homes originally intended for frail elderly people. In four cases, mentally ill patients died at the hands of other residents.   The organization flagged the situation to the Department of Justice.   Vicky Smith heads Disability Rights She says the state has cut services for too long, leaving thousands without treatment options. She says that's why now, the D-O-J is investigating.

Recently the state of Georgia settled with the Department of Justice over a similar lack of community services. Now, Georgia is compelled to spend tens of millions of dollars to create community services for people with mental illness.   A Health and Human Services spokesperson says no one can comment because of the ongoing investigation.   Rose Hoban, North Carolina Public Radio, WUNC.

This story is part of the North Carolina Voices series Mental Health Disorder. Read Rose's blog about this series.

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