Lanier Cansler was putting the best face on it, and even that wasn’t very good. Mental health reform, now under way in North Carolina, makes sense on paper. In practice, it isn’t working.
Why? “I do not think we have done as good a job as we should have,” the deputy secretary of the state Department of Health and Human Services told a group of some 100 mental health advocates, clients and practitioners in Chapel Hill recently. “The commitment is there. But the money–that’s the question.”
Actually, it’s not a question, as 100 heads shaking in open frustration made clear. The money needed to support reform, three years into it, still isn’t there–not from Gov. Mike Easley’s administration and not, as events in the General Assembly last week underscored, from our legislators, either. Without it, reform is in trouble all over North Carolina, but especially in the rural counties.
Who’s getting hurt? First, the thousands of North Carolinians who aren’t getting the help they need to live productive lives. And second, the taxpayers of North Carolina, who could save tens of millions of dollars in the long run by overhauling a $2 billion system–that no one thinks is working very well–with the investment of relatively small sums now.
That’s because an estimated 25 percent of the people in our jails and prisons suffer from a mental illness; upwards of 40 percent of homeless adults do too. Many don’t know their disease is treatable, or even that they have a disease. All they know is that it feels bad, and drugs and alcohol make the pain subside.
We could help them break that cycle, for their sake and for ours.
Instead, we pay for the jails, and we pay for the shelters, and we keep on paying–with a little of our humanity–when we pass the homeless by and don’t help.
“It’s beyond me,” said state Rep. Verla Insko, D-Chapel Hill, the legislature’s leading reform advocate, “why we don’t put money into these preventive services that would save us millions of dollars down the line, when these folks are going to wind up in a prison or in the hospital, where it costs us so much more.”
At a recent meeting in Raleigh on the homeless problem, the administrative director of WakeMed’s emergency room told the story of one hapless man who kept coming in to complain that his leg hurt, or his foot, or something. He knew the hospital wouldn’t–couldn’t–just turn him away. What he really wanted was to talk to people he knew and get a meal, which the WakeMed staff always managed to supply, along with the obligatory medical work-up. The therapy he needed, however, perhaps including therapeutic drugs the E.R. doesn’t supply.
In four months, Janice Frohman said, the man came to the E.R. 126 times.
When she heard this, Debra King recalls, “I thought to myself, respectfully, that we could have put that man in a house for a lot less money.” King is executive director of CASA, a nonprofit agency in Raleigh that provides housing for the mentally ill.
Across the room, Pam Floyd had a related thought. When she tells people she’s a social worker in Wake County’s mental health program, Floyd said to the people at her table, she always gets a reaction like, oh, poor you. People think the homeless can’t be helped, that mental illness can’t be cured, and her job therefore must be a terrible trial. But the opposite is true. That’s why she loves her job.
Serious mental illness is never “cured,” she agrees, but is almost always highly treatable. And the rewards when it is treated–for the patient and the therapist–beat anything else she could imagine doing.
“The truth is, we know what works. That’s the hopeful thing for me. We just need the resources to do it, and to reach more people.”
Legislators talk about money a lot. Perhaps they should talk more about mental health, and what the money they’re not spending on it could buy. Here are three snapshots of what works, and how.
Getting Raleigh’s ACT together
Iola Sanderford keeps a 10-year-old newspaper clipping on the refrigerator door in her apartment, a reminder of how far she’s come. In it, there’s a picture of her, one of the homeless women some Raleigh churches were trying to help. She was an absolute mess, a hopeless case. Except that there are no hopeless cases, and she’s the proof of that.
For three long years, Sanderford lived on the streets, a victim of her bipolar disorder (or, manic-depression) and of the alcoholism that started when, at 15, she began to”self-medicate.” She slept on porches, she says, and under them. She ate out of garbage cans. Eventually, she tried to kill herself. After six months at Dorothea Dix Hospital in Raleigh, she was sent to a homeless shelter, where the Wake County mental health team found her. That was seven years ago.
I met Iola–everyone calls her that–when I sought out Pam Floyd, the social worker, and her colleague Jon Markle, at Wake County’s Drop-In Center, where on any given day 40 or 50 people with severe and persistent mental illnesses congregate for meetings, meals and to socialize. Floyd works at the Drop-In Center now, but for the past seven years she was a member, with Markle, of an ACT team in Wake County–short for Assertive Community Treatment. The team helped save Iola’s life. No, strike that. Iola saved her own life, with a lot of assertive helpers, prominently including Floyd and Markle.
So how is Iola now? She’s got some physical problems, courtesy of no medical care for so many years, but otherwise she’s in such good shape it might bring a tear to your eye, except that she’s also very funny–quick-witted, and quick to laugh–so probably you’ll be smiling instead. You would not guess, if you met her when she’s out walking, or when she’s with her friends at her church in North Raleigh, that Iola is “mentally ill,” though of course the bipolar disease never quits.
“After I found out that I had good people who cared about me and wanted to help with my situation, that’s when I put my best foot forward,” she says. “And that’s what I’ve been doing ever since.”
Everyone you meet at the Drop-In Center isn’t in equally tiptop condition, certainly. On the other hand, though, Iola Sanderford isn’t the shining exception. Rather, she’s an example of what can be accomplished with the kind of all-out effort an ACT team can provide.
ACT teams are the state-of-the art in mental health care, but they’re not cheap–they work because they’re not cheap, in fact. The idea behind them is simple enough: You tackle the hardest cases with everything you’ve got and everything the client needs, looking for a breakthrough. Instead of slow, steady therapy over the years, in other words, you go for broke upfront with a team of therapists.
The good news, Floyd says, is that it doesn’t take forever. But at the beginning, the most intensive kind of involvement with clients is needed, 24/7, because the client is living in fear of her disease and in fear that people will find out about it and run the other way. So gaining the clients’ trust–gaining it and keeping it–is the therapists’ toughest job and the prerequisite to progress. Someone must be on call at all hours, so a team approach is required.
Thus, Floyd’s spent many a night with clients, Iola included. Markle, with other clients, has spent whole days.”We have that kind of independence within the team,” he says. “But we don’t do it in a vacuum,” Floyd adds. “There’s a lot of networking, a lot of coordination of care. Everybody knows what’s going on with every client.”
The team that helped Iola, one of Wake’s two ACT teams, is called the McKinney Team, after the federal law that pays for half of it (to get the money, Wake County is required to match it). The McKinney Act is specifically for the mentally ill and homeless and includes money for housing. Wake’s McKinney Team is comprised of three case manager/therapists, like Floyd, plus Markle, the substance abuse counselor, as well as a jobs coach and a half-time psychiatrist, for just 60 clients. That’s less than the usual ratio of 30, 40 or more clients per therapist, but in the long run, the team approach works better and saves money, according to a study in Governing magazine.
Finding clients’ a decent, safe place to live in Raleigh is a daunting task, given the cost of even modest apartments. But it’s an absolute necessity if the client is to trust that progress in her case is coming, Floyd says: “Therapy doesn’t work without housing, but housing without therapy won’t last either.”
Enter CASA. Created a decade ago by the county, CASA is a nonprofit organization able to draw on a wide variety of federal, state, county and city funding sources. So far, it’s built or acquired just over 200 units of housing in Raleigh and surrounding municipalities, according to Debra King, at a total cost of $18 million.
CASA is actually the recipient of the McKinney grants; the county is a subcontractor supplying services to CASA’s residents.
Typically, CASA’s units are in small buildings in two-, three- or four-unit clusters. They can be found near, if not actually in, some of the city’s better neighborhoods: Iola’s apartment, for example, is a stone’s throw from Cameron Park, in a building that is in no way different from several others–not CASA-owned–on the same block.
“Supportive housing,” this is called. Clients pay one-third of their adjusted income, which can be as little as $100 a month if they’ve never been able to work much and have no other income besides the minimum Social Security disability check of $628 a month. (Others whose illnesses cost them good-paying jobs receive Social Security checks of up to $1,600 a month, the amounts varying according to past income.)
As for the therapy, Floyd says, it’s critical to treat the client as an equal partner in his or her own recovery. They’re the ones who, eventually, must learn to understand their illness, manage it, recognize the early-warning signs, and be ready to reach out for help at the first sign of trouble coming on.
The symptoms of mental illness rise and fall, experts agree, but they don’t just strike without warning. Early recognition, and appropriate therapy at an early stage, is critical to keeping symptoms in check. As clients gain confidence that their symptoms can be checked, they require less and less intervention.
When Iola started with the McKinney Team, for example, Floyd usually saw her twice a week, and Iola went every day to one of Markle’s “One Journey” group meetings for clients with substance abuse issues.
Today, Iola has graduated to irregular visits at the Drop-In Center–she comes about once a week, mainly to keep up friendships–and occasional “One Journey” sessions–again, at her option. She hasn’t forgotten that she once tried to kill herself, but that was in another life. “I’m happy and proud of my life today, and proud of what I’ve accomplished,” she says.
Wake County has three smaller day units like the Drop-In Center scattered around the county. But it doesn’t have a true psycho-social clubhouse of the kind the Wake chapter of NAMI, the National Alliance for the Mentally Ill, tried unsuccessfully to open earlier this year on Poole Road in Raleigh, near WakeMed. Wake-NAMI is close to finding two other sites for its clubhouse and a small auxiliary, in Knightdale and Raleigh, respectively. But until that happens, the closest one is in Durham, and it’s called Threshold.
A clubhouse family in Durham
It’s the morning meeting at Threshold, a clubhouse for people with mental illnesses, which is housed in what used to be a church in an East Durham neighborhood. About 40 folks are in the room, including a half-dozen staff. A bowling trip is on tap that night, which gets a few of the men excited. Others look up when it’s announced that the Angus Barn, the venerable Raleigh restaurant owned by mental health advocate Van Eure, has a job to fill. Someone volunteers to cut the grass. Then a staffer asks for help making breakfast, admonishing the clubhouse members about how important it is that they not leave all the work to her. “It kind of creates that bond that we try to achieve,” she says gently. Shortly, two of the members–Vivien Perry, who suffers from schizophrenia, and Rebecca Cheek, who says her problem is an inferiority complex–step forward to organize lunch.
The last word comes from Susie Deter, the executive director. The Durham Merchants Association has awarded Threshold a grant of $5,000. She apologizes for always talking about grants, but the money is important to everyone. Then her voice lifts, and the meeting ends on an energetic note: “Let’s go to work for our clubhouse,” Deter says.
Threshold is one of just 12 “true” clubhouses in North Carolina, Deter says, which means it operates according to standards set by the International Center for Clubhouse Development. It’s open 365 days a year, morning to night. Once a member, always a member. It’s your family. You can come every day, or as little as you want. Members are expected to work, not just in the clubhouse but in regular jobs too, as much as they can.
On the other hand, it’s not expected that they will find a job and keep it forever, because the nature of mental illness is such that the stress would be too much–Deter recalls the member who was named employee of the month at an Olive Garden restaurant, but came back every day sure he was about to be fired. So jobs are typically part-time, for up to six months, then the job counselor helps you find a new one.
The key, Deter says, is that the staff does things with the members, not for them–if members don’t take responsibility, things just won’t get done. “We’re deliberately understaffed,” she says. “The work is real. It’s not imaginary. You, me, everybody needs a reason to get out of bed every day. Being a member of a clubhouse is a reason.”
Moving around, it’s apparent the members function at different levels. One is barely awake. Several sit silently. One young guy walks up and down the hall jingling the change in his pocket. But the majority are busy at something, and my main impression is that they’re shy. Anyway, several of them who approach are happy to talk about their illness, the effect it’s had on their lives, or what they’re up to now.
Cheek, for instance, who is 60, says her inferiority complex caused her to break two engagements, and she never married. “But I’m not depressed,” she adds quickly. Actually, she smiles easily, especially when she tells me about the T-shirts she makes over at Meadows Oak Grove, an assisted-living facility where she lives.
Again, housing comes up. Perry says her Social Security disability check is $628 a month, and she’s thrilled to be in a new duplex apartment in West End, where it’s safe and the neighbors look out for each other. Her rent is just $150 a month, plus $22 for electricity and $45 for gas, she tells me. She’s been a member at Threshold for 15 years. She used to come most days when she lived closer. Now, she comes twice a week on a DATA bus.
Perry’s had a lot of jobs, and now she’d like to get that Angus Barn gig, though somebody said it would be too much lifting for her. At 49, she’s in decent shape. Still, notwithstanding the Prozac and two other psychotropic drugs she takes, her schizophrenia never really goes away, she says. It causes her to hear “something like a bomb” going off periodically in her head. “It’s not loud, it just happens,” she says softly.
When I talk to Deter–whose job, according to her deskplate, is “Head Cheese,”–I relate my impression that the members I met didn’t strike me as among the worst-off of the mentally ill. She’s clearly pleased: “These are the most seriously mentally ill,” she assures me. Every member meets the clinical definition of serious and persistent mental illness. All of them have spent time in a mental hospital, most more than once. They’re better now, and not just because they belong to the clubhouse, but it’s a big factor.
Mental illness, Deter says, is like heart disease. “With every attack, you lose a little bit, and you don’t come all the way back.” What clubhouses do is prevent the attacks by giving members a place to go when the anxieties start to build–and what could be more anxiety-producing than hearing bombs go off in your head and fearing that if you tell anybody, they’ll think you’re crazy? “It’s sad to say, but in this world people with mental illness need a place to go where people will understand,” Deter says. “It’s like what we are is a very functional family.”
Deter reaches for a study, done by two UNC graduate students, that found Threshold members had far fewer hospitalizations than a comparable group of others with mental illness who were referred to Threshold but didn’t join. The study also found that Threshold members’ own hospitalizations after joining were a tiny fraction of their experience before–altogether, just 3 percent of total hospital days.
That’s a huge savings for the hospital system. But only a little of it comes to Threshold: they bill Medicaid $2.25 per quarter hour for every member whose income–like Vivien Perry’s–is low enough to qualify. That’s most of them. Others, who had higher-paying jobs before their illness brought them down, receive disability payments of as much as $1,600 a month–too high for Medicaid. So the state pays for them.
Deter thinks North Carolina needs at least 100 clubhouses–one per county. Her worry, with mental health reform, is that pencil-pushers will take control and start looking around for cheaper alternatives that sound as good as a true clubhouse program but aren’t.
“We’re open Christmas Day,” she says, illustrating the point. “You could just go, ‘Well, it’s Christmas, have a nice holiday.’ But on Christmas, you want to have dinner with your family. We are your family.”
She’s been a mental health professional for 25 years, Deter says to me, the last six here. “I’ve come back to the clubhouse,” she says. “It’s not the easy way. It’s just the one that works.”
The Therapy Team
Barbara Britto and Karen Curran are veteran clients of the mental health system in Durham. They didn’t know each other until January, when each came to a public hearing to tell county leaders that they were going too far, too fast, by closing the Durham Center, as the area program is called, and outsourcing its functions to providers who weren’t yet even identified. Since then, they’ve worked together representing clients’ interests, always as critics, lately with official status on a committee deciding which new providers to use.
In the Triangle, Durham’s is the one program that raced ahead with reform, embracing the privatization model and the concept that its public agency should stop providing services and become instead a manager of services provided by others. Without the promised “bridge financing” from the state, however, what that’s meant in practice is that Durham is dismantling its public agency before any private providers are really ready to replace it.
Britto and Curran think that’s a mistake–that in the “fragmentation” of current services to patients, as they call it, somebody’s going to get hurt. “One person losing it, one person falling through the cracks because they’re devastated by this transition, that’s unacceptable,” Britto says.
The two are more opposite than alike. Britto, who goes by “Britt,” is 47, sharp-edged and outspoken. Curran, 56, is more methodical and prefers to put things in writing. A talented photographer, Curran does traditional portraits and multilayered images that only look abstract but reflect her painstaking precision.
Similarly, while Britto praises her treatment at Durham Center, Curran says that her own “has not been a smooth ride”–she’s had to fight to get what she needed. “I’ve had a few really good people” help, Curran says. “And because I wouldn’t give up on myself, a lot of them haven’t.”
They agree, though, that good treatment is a matter of teamwork–by clinicians working together for a client, and the client responding in kind. Now, their teams are breaking up as staffers leave the Center, and their fear is that the new providers will never be able to replicate them.
The fact is, of course, that they don’t really know. Durham has selected three providers thus far. Two, Triumph and ASAP, are for-profit medical firms that are just beginning to interview for their new Durham positions. The third, the Mental Health Association of N.C., is a nonprofit organization and has not previously offered medical services but is expecting to hire liberally from the Center staff.
Britto’s case illustrates how extensive such treatment can be. She came to the Center eight years ago after a suicide attempt and a stay at John Umstead Hospital in Butner. Her diagnosis: depressive, anxiety disorders and substance-abuse problems, mainly years of alcoholism. She’d been anorexic, dropping from a childhood weight of over 200 pounds to a low point of 72 pounds. She was reeling from the loss of her partner, who’d left with their child.
“The Center saved me,” she says. Thereafter, she tried private treatment (with insurance) in Chapel Hill, but she came back in 1998. “I’ve been a steady client since then,” she says, smiling broadly. “I’ve taken advantage of all the services.”
“All” means she sees a caseworker/therapist once a week, sometimes twice; has seen a substance abuse counselor when she needed to; checked into ISS (“intensive stabilization services”) a few times, usually for half a day, when she felt stress building up; and she currently is part of two client groups that meet with therapists once a week and twice a week, respectively. One group is for depression. The other is a “dialectical behavior group” that helps people like her who have trouble dealing with their emotions and relating to others, usually–she says–because they grew up without any useful adult influences.
She also has access to a psychiatrist for occasional check-ins and prescribing medications, though currently she doesn’t take any.
Curran says that she’s battled major depression and personality disorder all her adult life. In 1991, she crash-landed in John Umstead State Mental Hospital for seven months, which cost her a job she’d had for 10 years. When she got out, she joined Threshold, moved into a subsidized apartment nearby that was owned by the Durham Center (Threshold is about to take it over), “and I’ve been on the road to get better ever since.”
At first, Curran says, she thought working again was out of the question. “When Threshold said I would work, I laughed. But I did work”–in a camera store, teaching a college photography course, at a food co-op, and a lot of volunteer work too, building herself up to the point that she could advocate, first, for herself, and now, for others.
When we talked, neither Britto’s therapist nor Curran’s had taken a new job; both expected that their provider teams would scatter among the new providers, or to jobs elsewhere. Their peer groups, too, were dissolving.
“We’ve been holding meetings with other consumers,” Britto said, “and we keep hearing that their groups are saying goodbye, closing up shop, without knowing what comes next. And, I mean, that’s the main support.
“[Clients] may do therapy every week or other week, but to really get out, and be social with people, and to share in a community setting, that’s their bread and butter, you know? That’s what’s been keeping them together, and you hear it over and over.”
Curran is active in the Durham chapter of NAMI and says she supports its view that the mental-health system needs choices for clients and some competition, not monopolies like the Durham Center. Still, she wishes her choices included keeping her current Durham Center psychiatrist. “If I have a problem, I can call her. If I need something changed, medication or that, she’s willing to listen to me.”
Britto, too, wanted the Durham Center staff maintained while new providers were added. She fully expects that the new system of “managed care” will mean less treatment for many, maybe including her. “The people who are making the decisions about clients won’t be the clinicians,” she says. “They’ll be coming from a business point of view” and won’t necessarily understand why “intensive therapy” is what works best. “So they could say, ‘Here’s some visits. Feel better? See ya.’ We will get services, but É”
To all of this, the interim director of the Durham Center, Ellen Holliman, nods agreement. “It has been a very difficult year of transition,” she says.
Nonetheless, Holliman, who lives in Davidson County and was hired to supervise the changeover, believes strongly in reform, arguing that it will allow Durham to serve more clients more effectively for about the same amount of money. And while state “bridge funding” would have helped smooth the way, she says, Durham decided to press ahead, slowing its original, “ambitious” schedule for just six months.
The reason, she says, is that Center staffers realized they weren’t serving enough people. The best evidence of that: Durham residents were ending up in Umstead at twice the average rate for other counties. Holliman says Durham’s “prevalence rate” was also poor; only half the people eligible for mental health services typically seek them out, she says, but in Durham, the county was serving less than half of that half.
A reorganized system will allow professional managers to authorize the right kinds of services–“best practices,” in the parlance–but not too many, extending available dollars to more people. “We need to authorize according to clinical protocols, scientifically proven best practices,” she says. “People with severe and persistent mental illnesses need housing, support and friendships,” and if they get it, therapy sessions can be reduced.
Tom Maynard is the executive director of the OPC Area Program, short for Orange-Person-Chatham. It’s widely considered to be among the best in the state, if not the best–an exception to the general criticism of area programs as hidebound and ineffective.
Maynard thinks the ability of private providers to replace the public system is unproven, especially given the state’s lack of financial help. He thinks the best solution is a hybrid system of public and private providers, with the area programs continuing to be bidders as a check against what the competition may offer. That’s essentially the Wake County approach, and he’s trying to take OPC in the same direction.
Eventually, reform should mean less reliance on expensive state hospitals and psychiatric therapy and more use of assertive-treatment teams that prepare people to manage their own illnesses, supported by a network of community-based psychosocial supports like Threshold offers.
But how do you get from here to there without putting patients in the current programs under the kinds of stress they don’t need?
The last night we saw Barbara Britto, she was at a consumers meeting with the representatives of Durham’s three new providers, all of whom promise good programs going forward but were candid that they haven’t got them yet. As a result, Britt was in tears–highly agitated, highly afraid.
A few days later, we talked on the phone. She sounded strong again. She’s determined to be a survivor. But two of her best friends had been hospitalized that day, she said. They were breaking down under the stress.