Editor's Note: On one side, politicians refusing to increase taxes. On the other, North Carolinians needing health care, housing assistance, educational programs and other social services that will be cut back severely unless taxes are raised. That's the lineup come Tuesday, May 28 when the General Assembly, facing an enormous shortfall in revenues from the recession and past tax cuts, returns to Raleigh to write the state budget for the 2002-03 fiscal year.
The mental health system, the subject of this story, is just one place the budget ax could fall, but it's an especially irrational one: Easley administration officials call mental health "severely compromised" by past budget cuts and lack of leadership, but Gov. Easley has it targeted for more budget cuts--his idea of leadership.
The overall budget mess, the North Carolina Alliance for Economic Justice says, is a crisis that demands a progressive response from the legislature. Slashing services to the needy "would set North Carolina's progress back a decade," it says. The Alliance is a confederation of seven groups that favor raising taxes instead: the North Carolina Justice and Community Development Center; N.C. Council of Churches; N.C. Fair Share; Southerners for Economic Justice; Jubilee N.C.; N.C. Association of Community Development Corporations, and the Common Sense Foundation. They'll lead a "March for Justice" to the legislature on Tuesday, starting at 9 a.m. from the Clarion Hotel (formerly the Brownestone), 320 Hillsborough St. On Monday, May 27, the Alliance will hold a pre-rally dinner at the Clarion, starting at 6:30 p.m., with U.S. Rep. Eva Clayton as the featured speaker.
Among those appealing to the General Assembly when it reconvenes Tuesday will be a small but compelling group of mental health consumers--people battling severe mental illnesses who depend on public services and want them improved.
The legislature, after all, enacted reform legislation just last fall that called for a sweeping overhaul of the mental health system, including a promise of additional funding. The Easley administration drafted a plan to close two of the four state psychiatric hospitals, Dorothea Dix Hospital in Raleigh and John Umstead Hospital in Butner, and replace them with a plentiful array of small, community-based facilities and programs. What's on the table now, though, as the state confronts a prospective budget deficit of some $1.6 billion for 2002-03, is not more money for mental health but less--probably a lot less.
What's maddening to consumer advocates is that the science and methods of treating mental illness have advanced so rapidly over the last half century that thousands more citizens could be helped to live productive lives if given the right combination of drugs, therapy and social services. Keeping large numbers of patients in places like Dix and Butner isn't necessary any more, if it ever was. Nor, according to the U.S. Supreme Court's landmark 1999 decision in the Olmstead case, is it legal. States have an affirmative obligation to help citizens with disabilities live in the "least restrictive setting" possible, the court said.
In that sense, "it's the best time ever to have a mental illness," as Raleigh resident Stephanie Gilmore says below. Following an amazing recovery, Gilmore is coping with her schizophrenia with the help of an extensive network of family and private support. Unfortunately, though, even as treatments have advanced, funding has retreated for public programs on which the vast majority of our state's mental health patients depend. Year after year, the gap grows greater. Year after year, the number of mentally ill people who are homeless, or in jail, increases.
In that sense, for the afflicted who are not well-off, it's the worst time to be mentally ill in our state.
Raleigh resident Martha Brock is a smart, well-informed woman; a 52-year-old mother of two with a bachelor's degree in economics and a bent for politics. She was active in the League of Women Voters when she lived in Charlotte, and when she moved to Wake County in 1986 she ran for a seat in the General Assembly, not to win--she got "creamed"--but to help show the way for more women candidates in the future. That's also the year her schizophrenia overwhelmed her. She ended up in a psychiatric hospital after she drove off in a stranger's car because, well, because Brock was hallucinating at the time.
Schizophrenia, manic-depressive disorder and major depression are the three main forms of what's called "severe and persistent" mental illness. According to the state Department of Health and Human Services (DHHS), some 99,000 North Carolinas are in this category. State programs serve about 35,000 of them. Some of the rest are in private treatment, but based on national statistics, it's reasonable to assume that at least half of them are getting no treatment at all.
The causes of mental illness are not well understood, but they include biochemical imbalances in the brain for which, so far, there are no cures, only ways of easing symptoms. In the realm of the severe, persistent illnesses, schizophrenia is considered the most disabling because of the hallucinations, which include hearing voices telling you to do things, and sometimes visual scenes as well that seem to be real ... are real ... but only in your mind.
When Brock took the guy's car, it was because the voices in her head told her that he had left it in the parking lot, running, so that she could drive it across the street--which she did. Her own car was parked nearby. She sat in his car for quite a while, until the police came and arrested her. She was sent to Holly Hill, a private psychiatric hospital in Raleigh that at the time was locally owned (it's now part of a national chain). Wake County sometimes placed its public cases there.
The impact of hallucinations, Brock says, is brilliantly conveyed in the movie A Beautiful Mind, in which Nobel Prize-winning mathematician John Nash is unable to tell when he's in the real world and when he's in a world his mind has conjured. It's the same for her: Sometimes her hallucinogenic world is funny, sometimes it's a world of demons and suicidal messages. Although she knows at some level that it isn't happening, at times it can take on its own reality, "like being in a dream, but a dream or a nightmare that you won't wake up from."
And it can be dangerous: Brock remembers once, when she was driving her car, the road started moving back and forth. She was lucky that it started before she got on the highway. She was lucky, too, that when she pulled over, she guessed right about which way "over" was.
Brock had been hospitalized once before in Charlotte during her divorce. The 1986 episode represented a new, deeper level of psychosis from which she emerged only gradually, over a period of several months, helped by the intensive therapy Holly Hill offered at the time. Once recovered, she returned to the hospital as a volunteer facilitator for one of its patient support groups, a role that led to her becoming active in the advocacy group, National Alliance for the Mentally Ill (NAMI). At one point, she was its North Carolina vice president.
What's the biggest problem for the mentally ill? From a previous conversation, you're expecting Brock to say it's slipshod treatment or the lack of affordable housing. Instead, "It's the stigma," she says flatly.
Because of that stigma, Brock believes, the public views people with mental illness as "abnormal" and "defective"--unlike, say, someone with diabetes. Worse, most people think the mentally ill can't be "fixed" and so, are not worth spending a lot of money to help--only enough to protect against the chance they'll go crazy and hurt somebody.
The truth, however, is that a revolution in antidepressant and anti-psychotic drugs, while not offering any cures, is allowing many patients who take them to live reasonably steady lives most of the time--especially when the drugs are combined with counseling, physical, speech and occupational therapies, social activities and--for those who can handle them--full and part-time jobs.
Brock says that she continues to be either "mildly depressed" or "mildly high" almost all of the time. The reason you don't notice her condition, she explains, is that she's usually able to mask her moods with a happy face or just by being quiet. And, day to day, she does mask it, because she's not immune to the stigma: She's pretty sure she lost a job a couple of years ago when her visits to a psychiatrist got reported to her employer. Where she works now, answering calls to a Job Corps information hotline in Durham, they have no idea she's schizophrenic, she says.
But stigma or no, Brock's determined to speak out and let the world know that you can be mentally ill and still be normal.
"The evidence is that public attitudes haven't gotten any better over the last 20 years," she says. "The stereotyping is just as strong, and in some ways, it's worse now than it was before," because of television's focus on a few violent crimes committed by mentally sick people. Advocacy groups like NAMI point out that people with mental illness are no more likely to commit violent crimes than those who are mentally healthy.
"Consumers speaking out is the one thing that's been shown to help," Brock says. "Most consumers are afraid to do that, and I'm not criticizing them, they have fears, and some real legitimate fears."
She knows how they feel because, of late, she's been among the members of the state-sponsored North Carolina Mental Health Consumers Organization pushing for a demonstration at the General Assembly next week. Some members want to do it. Most don't. But Brock plans to be there regardless. "I understand the risk. I will take the risk. I won't push others to take it," she says.
Because of the stigma, and because mental health patients are so invisible and politically impotent, Brock thinks the state's mental health system has been getting steadily worse since 1986. Its one strength, she says, is that it does keep patients up to date with the latest psychotropic drugs--if you are a patient. Unfortunately, the system misses many thousands of people completely, and for those who do come into it, drugs are often equated with therapy, shortchanging people on needed services like housing, and--critically--emergency help in a crisis.
To illustrate that point, Brock contrasts her own good experience with emergency hospitalization in 1986 with what happened to her last December, when she was living in Durham. Despite following her drug regimen, she felt herself slipping into a hallucinatory, suicidal state. She called a county crisis hotline. It was answered by someone in California, who sent an ambulance that delivered her to John Umstead Hospital, the state psychiatric center in Butner. She'd asked to go to UNC Hospital, where people knew her--and could look at her records--from an admission six months before. But Durham, to keep its own costs down, sends emergency patients to Butner, where the state pays the bill. (In Wake County, Dix is used the same way, which means both counties will have a big problem if the hospitals close.)
Butner, Brock says, was run like a penal institution. "People were just on your case, waiting for you to make a mistake." She saw a doctor once a day for a few minutes, which he used to impress upon her the importance of taking her drugs. He suspected she'd stopped. She says she hadn't, but her suicide urges came anyway. She thought she should get the kind of attentive therapy that helped her recovery 15 years earlier at Holly Hill. It wasn't to be had.
Housing is also a huge problem for the mentally ill, Brock says. Most mental patients don't work and have little money beyond a small disability check. She's working now, but hasn't always. Consequently, she's bounced around because in the Triangle, affordable housing is very hard to find. After her hospitalization at UNC, for example, she lost her apartment in Chapel Hill and, even with the help of Orange County Social Services, couldn't find another one. Same story when she left Butner: nothing in Durham, nothing in Raleigh. Even the ARC, a shelter in Raleigh for homeless women in Raleigh was full up, except for mothers with children. (Brock's children are grown.)
She finally managed to get a place, for $350 a month, in a single-room-occupancy in East Raleigh owned by a nonprofit ministry; the other residents are women with substance-abuse problems.
Before the revolution in drugs, there were huge state psychiatric hospitals--Dix, Butner and two others in Goldsboro and Morganton. In the mid-1950s, North Carolina housed some 10,000 patients in them. By the '70s, though, it was possible for most of the people who'd been hospitalized to live more independently in communities. President Jimmy Carter's Commission on Mental Health said those folks had a right to "the greatest degree of freedom, self-determination, autonomy, dignity and integrity of body, mind and spirit for the individual, while he or she participates in treatment or receives services."
This was the era of "deinstitutionalization," at the end of which North Carolina's psychiatric hospital population had dropped by three-fourths. It is now approximately 2,100, or about 500 patients at each of the four hospitals.
But if deinstitutionalization was right in theory, in practice it was "a psychiatric Titanic," says Dr. E. Fuller Torry, a researcher at the Neuroscience Center of the National Institute of Mental Health and the author of Out of the Shadows, a withering critique of the nation's failure to make good on its promises of mental health reform.
States were supposed to replace the warehouse hospitals with community clinics and needed social service programs--like affordable housing. They didn't do it--or, at least, not nearly enough of it. Severely ill patients were released with a prescription slip and an appointment for follow-up somewhere that they might or might not keep. Other patients who would have been admitted to the hospitals before were deemed well enough to cope on the outside, though many--unaided--were not. Many landed in adult care facilities or lightly supervised boarding homes where their lives were not appreciably better than before.
Worse, the number of the mentally ill who were homeless soared, and the prisons started filling up with people who "self-medicated," to use the professionals' term, with alcohol or illegal drugs, then committed crimes to support their habit.
Social services officials in Wake and Durham counties make a direct link between the crisis in mental health and homelessness. Helped by volunteers, they fanned out one night last winter to do a count. They found 1,571 homeless people in Wake and 473 in Durham, both figures a 50 percent increase from two years earlier. In Wake County, another 12,600 people were estimated to be living "doubled up" in places where, if the landlord wanted to, he could evict them.
In 1999, the Supreme Court's Olmstead ruling set off a new round of deinstitutionalization. The case involved the social services system in Georgia, but its meaning was unmistakable everywhere: Any people still living confined lives in state institutions, but capable of living in a community setting with appropriate assistance, must be allowed to do so. The "least restrictive setting" was their constitutional right, the court said.
In the 2001 General Assembly, a Joint Legislative Oversight Committee co-chaired by state Sen. Steve Metcalf, D-Buncombe, and Rep. Verla Insko, D-Orange, drew up a bill overhauling the state's mental health, developmental disabilities and substance abuse system (MH/DD/SA). It called for junking, over a five-year period, the existing network of 38 "area programs" and replacing it with a county-run system. The area programs, run by boards comprised of county and state officials and medical professionals, were designed to be responsive to everyone, Insko explained. But they proved to be accountable to no one.
So the 100 counties were directed to take charge. They could run their own programs or get together with neighboring counties, but the responsibility for what happened was theirs. House Bill 381 easily passed both houses of the legislature and was signed by Gov. Mike Easley on Oct. 15, 2001.
Under the bill, the state's role would be more regulation and less direct service: The measure calls for eliminating 700 more beds from the four psychiatric hospitals over five years. Earlier this year, Secretary of Health and Human Services Carmen Hooker Odom announced her plan to close Butner and Dix completely and replace them with one new, smaller hospital somewhere--perhaps in Chatham County.
Critics of the plan questioned whether cash-starved county governments, especially the ones in poor areas of the state, would pay for the new facilities and programs needed to improve the mental health system. Legislators insisted that they would have to do so, but they also promised that because the state would be spared the expense of keeping the big old hospitals open, it would have more money to share with the counties. Moreover, they noted that while federal Medicaid funds can't be used in state hospitals, they can for county programs.
To sweeten the pot, legislative leaders and Easley appropriated $47.5 million to a special mental health trust fund, to help ease the "transition" from a state-run system to a county-run, but state-regulated one.
Before the ink on the trust fund check was dry, however, Easley snatched back all but $12 million of it to help fill the hole in the state budget. The money remains frozen. On top of that, Easley cut social service programs 8 percent in the current fiscal year, and he's told DHHS officials to get ready for another 11 percent in 2002-03. DHHS Secretary Odom responded with a plan that put the MH/DD/SA programs down for a $60 million reduction--one-third of what the state spends now.
Odom said a cut of that magnitude, if she were forced to do it, would be "catastrophic." Says Beth Melcher, NAMI-NC's legislative director: "If these cuts are enacted, a system that is trying to reform itself won't have a system to reform."
That's the decision the General Assembly confronts today. For the longer term, critics think the state's reforms will make a bad situation worse, and a war of words has broken out between Dr. Tom Smith, an Asheville psychiatrist who leads a group called Friends of Public Mental Health in North Carolina, and Rich Visingardi, newly installed as head of the state Division of MH/DD/SA under Odom.
Smith says the state is "dumping" mental health costs onto the counties, which have little desire or ability to pay them. Worse, he says, the state's plan requires in most cases that the counties buy services rather than provide them directly. The effect will be to replace a public health system with private, for-profit companies and health-care providers who will treat it as a "cash cow." Smith's prediction: Like HMOs, they'll cherry-pick the market, dodging the sickest, most costly patients and concentrating on services to the "worried well."
Visingardi says the reason the counties are blocked from providing services themselves is to strengthen their role as managers. Let "market actors" compete for the business, he counters, while government does the job it's best suited to do--set policy and manage.
Replacing regional programs with local ones, Visingardi says, has another benefit: The consumers who depend on them will get a chance to help design and run them. "We're letting people take ownership of the programs that are intended to support them," he told a gathering of mental health advocates in Winston-Salem recently. The counties need to "draw from their strengths, gifts and talents," he added, and if they do, consumers will help "strengthen and draw out the community's strengths, gifts and talents."
Joe Donovan is a huge advocate of the idea that consumers can help. A 37-year-old ex-computer geek, he's an analytical thinker who also loves the movie A Beautiful Mind--but for a different reason than Brock. In the movie, genius John Nash creates a theory of game-playing that proves, if winning is properly defined, everyone can win. Done right, Donovan says, mental health reform can be a winner for the state, the counties and consumers as well. But only if consumers are involved in the system.
Donovan is manic-depressive. Six years ago, he was suicidal. Today, he's "stable," and the only visible sign of an illness is his occasional hesitation when he's speaking, before he finishes a thought.
He's not so steady that he'll ever be a computer programmer again, however. Shrugging, he jokes: "I was ready to kill myself so I wouldn't have to."
What he'd like to do instead is put a lifetime of experience with mental health issues to work as a "peer counselor," helping others cope with the stresses that brought him down.
"I grew up in the system," Donovan says, "so I understand it, and I'm not afraid of it." Like Martha Brock, his disease is well-hidden most of the time. With the right anti-psychotics, he's "stable" as long as he watches out for too much stress. Stress, all the experts agree, is what destabilizes people with mental problems--it's the main reason most cannot take on full-time (and some can't even take on part-time) work.
Donovan wasn't diagnosed as manic-depressive until 1996. But the danger signs were everywhere: His mother, who raised him, was manic-depressive; his father, who left, was an alcoholic; and looking back, Donovan says he was often depressed and started "self-medicating" with alcohol and illegal drugs as a teenager.
After high school, he went into the Marines, learned programming, then bounced around from one computer gig to another, usually working for big bureaucratic systems. His last move was from California to North Carolina, where among his clients--ironically--was the state Department of Health and Human Services. Always, he made good money. Then he'd quit. "Computer geeks are supposed to be eccentric," he laughs. "So it was not recognized as typical manic behavior--but it was."
When Hurricane Fran struck in 1996, however, Donovan, already cycling low, spiraled to the bottom. With trees laying on top of the house he owned up toward Rolesville, he holed up inside for the next six months, cruising the Internet, calculating the disappearance of his savings and telling himself, no problem, he'd look for work next week. Or kill himself.
Finally, when his friends prevailed on him to get help, he knocked on the door at Wake County Social Services. "Like I said, I grew up in the public system, so the public system is where I went." Donovan spent several weeks at Dorothea Dix, where he "essentially needed to decide whether there was anything I thought it would be worth living for." Not computers, he decided. But it would be worth it if he could use his hard-won knowledge of how bureaucracies work to help change the mental health system.
One way to do that, Donovan thought, was to educate the mentally ill so they could understand what they were experiencing and how it should be treated. He'd seen professionals when he was young. He could have been taught that heredity is a powerful indicator, and he was at-risk because of his parents' illnesses. But he wasn't. So later, working as a consultant, he never bothered with insurance, never sought treatment, never saw himself as sick. "If I had, a lot of things might have been averted--but, oh well, you can't undo the past," he laughs.
People with mental illnesses can get "stuck" in lousy facilities just because they don't know what else to do, Donovan says. He saw that at Dix. He saw it at the adult rest home where he was sent when he left Dix. It wasn't very good, he says, and he knew enough to get out of there, ASAP. But others living there did not, and the rest home itself was happy to keep them--and the Medicaid payments that came with them. "These homes are supposed to be transitional, but they're not, and one reason is because nothing else has been developed, so people get in them and are stuck."
Donovan's now living with a roommate in a classy townhouse development not far from Raleigh's Glenwood South district. Among the disability crowd, he's gentry: Because he made so much money before and is eligible for veterans benefits, his monthly check is some $1,500. Under Medicare he has no prescription drug coverage. But he's getting free drugs from the manufacturer by participating in a clinical trial. He smiles. That's the kind of know-how he could pass on to friends.
Donovan's ready to march to the legislature to demand that it keep its promises to the mentally ill. That includes releasing the rest of the $47.5 million back to the mental health trust fund. If lawmakers do, he supports Odom's plan to close Dix and Butner and replace the behemoth state facilities with community-based, consumer-driven programs. These would include more "clubhouses"--drop-in centers run by, and for, folks with mental illnesses--like the handful that exist now in the Triangle. They would include Program for Assertive Community Treatment, or PACT teams. Rather than waiting for mental clients to drop in, teams of medical practitioners, social workers and--yes--peer counselors would go out and find them--in their apartments, in the shelters, on the streets or in jail, if need be.
The revolution in drugs and therapies means people don't have to be sent to "a special place" to live out their lives any more, Donovan says. But even the strongest patients can't just be turned loose without a solid system of community support. "People who have the best support systems--peers, families, friends, services--they have the best lives," he says. "The people who leave a hospital but return many times are the ones the county system never gets connected with."
Establishing county systems can't be done without more state funding, Donovan is sure. He raises his two fists and drives them together for emphasis. "Reform and the budget cuts are on a collision course," he says.
Stephanie Gilmore was on her own collision course for years, but she's survived. She has schizophrenia, and like many others, there was a genetic predisposition to her illness. Her mother is manic-depressive. So was her mother's mother. Stephanie's father, before he died, was an alcoholic.
After several periods of depression in adolescence, Gilmore had "a full psychotic breakdown" in the summer of 1986, when she was 20. She was living by herself in an apartment. She thought her radio was talking to her. She thought the smoke detector was a camera. She thought the clicks the heater made were a code. She was viewing all this from a position--frequently naked--on the floor. Fortunately, she had a minor motor vehicle accident and was arrested for unpaid tickets. From traffic court, she was sent to a psychiatric hospital, where she and her mother both were diagnosed for the first time.
Gilmore remained delusional for eight years. Like Brock, she dimly suspected that what she was seeing and hearing wasn't real, but she was unable to reason it out. "You wouldn't believe how real it is. It comes into your head, and it feels so natural, and it feels real." And not just real, but very entertaining at times, she laughs. She was telepathic. Wasn't everyone? When music was playing, it was just for her. She remembers thinking that one of her psychiatrists was a Hollywood producer, and that what she was seeing was a show he'd put on for her approval.
Drugs were prescribed. They did not work. She was hospitalized repeatedly, kept in seclusion and in restraints because, at times, she would try to hit the nurses or spit on them. The medication, especially when she was taking Haldol, made her sick.
Finally, the doctors sent her home. They said nothing could be done to help her, and the best she could hope for was to live in a "secure, warm environment" with her parents who, although they had their problems, did love and care for her.
In 1993, after many other drugs had been tried, her psychiatrist put her on Clozoril. It's not indicated for schizophrenia and is high-risk besides, she says--some patients develop a blood disorder and die within six months. But Gilmore's voices were telling her it was a pill that would let her live forever. She took it for a year. Nothing. No change.
And then one day, July 19, 1994, she snapped back. "It just stopped making sense all of a sudden. My voices were telling me that smoking cigarettes was good for me. I wanted proof. They said I'd get it at 2:15 p.m. I didn't. And I remember being on my bed, smoking a cigarette, sitting up and saying, 'This is bullshit. This isn't right.' All of a sudden, I was able to reason."
Today, Gilmore is in pretty good shape. She lives by herself in an apartment near Raleigh's Cameron Village. She drives. She goes to NAMI meetings, and has just started a support group for mental patients that meets in the Wake County Social Services building.
But she's not all the way back and may never be. She doesn't work for a living, fearing the stress will be too much. She had a part-time job a few years ago in a bookstore, but it was only with the sufferance of a very understanding boss that she could handle it. "There were a lot of things I just couldn't do, because of lack of concentration or energy," she says. She tried taking classes at N.C. State University, but she broke down in tears under the stress.
"I tend to be a little fragile," she explains. "I'm getting better. I'm getting stronger. But absolutely, I have to watch myself every day."
Gilmore is among the mental health consumers who will speak out about her case to a reporter, but she's not ready yet to go one-on-one with members of the General Assembly. Still, she thinks it's important to relate what happened to her for this reason: She recovered from what was thought to be a permanent delusional state and now lives a satisfying, productive life--and it's all the result of excellent care by a network of family, friends and private health care providers.
"If I were living in the '40s or the '50s or the '60s, I'd be institutionalized, and I'd probably be dead," she says. "If there's ever been a good time to be mentally ill, now is the best of times."
But it wouldn't be if she'd had to depend on public services, Gilmore emphasizes. Her family could afford good, private care because her dad was an engineer who worked in industry and later was a professor at N.C. State. Upon his death, her Social Security disability check increased from about $500 a month to $1,000, which would leave her quite poor, but her mother can afford to help out by paying for her apartment and for her prescriptions. She sees a private psychiatrist every three months and a psychologist every week.
Gilmore contrasts her own case with many others she's seen since getting active in NAMI: Patients who are in the public system who can't get appointments with their psychiatrists--and since the psychiatrist is the only one permitted to prescribe drugs, they don't get good "med checks," may be stuck on the wrong medication, and may not even be properly diagnosed in the first place." They don't have a work history, so all they get is a $507 disability check from the welfare system (called SSI), and almost all of that goes to the boarding home or adult care facility they've been "plopped in."
"Just plainly," she says, getting hot, "there's not enough money for good services--they do a lot of talking, but they don't follow through with the services." And the reason, she says, is the stigma--which she translates as meaning that she should be ashamed to be crazy.
"If I were quiet about it, or ashamed of it, I would only be perpetuating the shame they've put on me," Gilmore says. "I did not choose to be mentally ill. I'm just hoping that this article helps to open up people's minds a little bit and makes people think, and maybe leaves them with a little more compassion for this group of people."