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.
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.