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.
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.