Every morning, Lloyd Hale wakes up, gets in his car, and drives to his full-time job as a peer support specialist for the Charleston/Dorchester Community Mental Health Center (CDCMHC). On weekends, he works at Ryan’s Steakhouse for some extra cash.
Lloyd pays his own bills, maintains his own apartment, and enjoys hanging out with his friends and his girlfriend.
Lloyd also has schizophrenia.
According to the National Institute of Mental Health (NIMH), about one in five people suffer from mental illness. In addition, four of the 10 leading causes of disability in the United States and other developed countries are mental disorders — major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder.
Yet for such prevalent — and often manageable — diseases, mental disorders are grossly misunderstood and undertreated. According to NIMH, the average person waits nearly a decade before seeking treatment for a mental illness. Left untreated, the illnesses can lead to substance abuse, crime and violence, teen pregnancy, school failure, and unstable employment. Once diagnosed and treated, however, most people with mental illnesses are able to lead healthy, productive lives.
Often, the illnesses take hold during a person’s formative teenage years, as was Lloyd’s case. During his childhood and early teen years, Lloyd was a bright student with a healthy social life.
“I loved parties, football and basketball games, school … flirting with the girls,” Lloyd says.
But at age 15, Lloyd began to experience hallucinations. He heard voices all the time. They would be both strange and familiar voices, sometimes those of his friends and family.
“It was like I’d be going to the store and I’d ask you if you wanted anything. I’d hear you say you wanted a Kit-Kat and I’d get you one. But in reality, you never said that,” Lloyd says. “Then, once your voice was in my mind, it would stay there and I could have a conversation with you any time I wanted.”
In an effort to medicate his symptoms, Lloyd developed a dangerous drug habit, began neglecting his school work, and started getting into trouble at school and at home. He also became increasingly introverted — often afraid to leave his own house.
Lloyd says the voices told him that hearing them was completely normal, but they also instructed him not to talk about them to anyone. For example, if he was hearing the voice of a friend, the voice would tell him not to talk to that friend about it.
“I thought this was a special power everyone had,” Lloyd says. “But I thought you weren’t supposed to talk about it in person.”
Eventually, Lloyd sought treatment for his disease. Once properly diagnosed, Lloyd entered a mental health facility in Columbia. When he moved back to Charleston, he stayed at a boarding home in Summerville, where he learned how to live with schizophrenia. Once he began living on his own, he continued to receive outpatient treatment through the Charleston/Dorchester Mental Health Center, where he now works as a peer specialist. In sharing his own tale of suffering and survival, Lloyd helps others learn how to live successful lives in spite of their disorders.
But seeking and receiving treatment isn’t always easy, especially for people who don’t have health insurance. Funding for public clinics is drastically low right now. Since 2001, the South Carolina Department of Mental Health has lost $30 million in state funding — making the department’s budget lower than what it was in 1998 — despite the fact that costs to run the department’s many programs have increased by more than $45 million since then. About 1,000 full-time employees have lost their jobs and myriad programs have been cut as a result, according to John Hutto, spokesperson for the state Department of Mental Health.
The most common programs being eliminated in centers around the state, including Charleston, are those that treat people who suffer from depression, anxiety, and other less severe mental illnesses.
“It used to be, years ago, you could go to the Department of Mental Health for marriage counseling, depression — not anymore,” Hutto says. “Now it’s strictly for people who are severely ill.”
Locally, the CDCMHC was stripped to the barest bones. Known as the flagship center of the state Department of Mental Health’s network of 17 mental health centers statewide, the Charleston-Dorchester center serves about 6,600 adults and children annually.
Massive cuts in two of the center’s main funding sources — Medicaid and state allocations — left the center floundering last fiscal year with a $1.5 million deficit. Through painstaking cutbacks, CDCMHC Executive Director Deborah DiNovo shrank the immense deficit. While the final numbers aren’t in yet, the remaining deficit should fall between $600,000 and $1 million.
“We didn’t have a lot of fat to begin with. We cut into bone,” says DiNovo.
Among the casualties was the therapy unit, which provided outpatient therapy to people suffering from depression and anxiety disorders. DiNovo says cutting the therapy unit was a difficult decision, particularly since there aren’t many other options for people who would benefit from the unit’s care.
“These are the people who fall through the cracks, the people who aren’t ‘sick enough’,” DiNovo says, noting that she hopes to reinstate the program as soon as it is fiscally possible.
In addition, caseloads have increased dramatically, from around 70 clients per case manager to more than 100. With such high caseloads, the wait time for an appointment at the center is around two weeks. With an overabundance of clients needing immediate, individualized care and not enough resources to service them in a timely manner, the CDCMHC is backed into a corner.
“You’re not seeing any smoke — you’re just putting out the big fires,” DiNovo says.
Stumbling through the beginnings
In the case of Crystal Leonard, a 19-year-old girl suffering from schizophrenia, a too-long wait time for an appointment at the center nearly cost her her life.
Crystal was a vibrant teenager with a promising future. She graduated from high school with honors and planned to attend college to become a nurse. After graduation, everything changed. Like Lloyd, she began to hear voices. The voices were cruel, calling her names and telling her horrible things. They came in the form of friends’ voices, strangers’ voices, and even voices from the television or radio.
“I’d be sitting right next to a friend of mine and hear her call me a bitch,” Crystal says. “Or I’d be watching TV and the characters would look right at me and tell me I was a slut.”
Along with the voices came a deep depression. Crystal, like Lloyd, attempted to medicate her illness by partying. In high school she smoked marijuana occasionally and drank alcohol recreationally, but never to the point of concern. In order to cope with the depression and voices, however, Crystal experimented with methamphetamines and other heavy drugs, which she says her doctors believe may have increased her hallucinations.
Crystal had been hearing the voices for a few months when she finally admitted to a friend that she was scared and needed help. They called the CDCMHC, but it would be two weeks before she could be seen. In the subsequent days, the voices got worse and Crystal began to panic. She went to a physician who prescribed her some anti-anxiety medication. She called the mental health center and tried to move her appointment up, but there was no way they could fit her in. A couple of days later, feeling suffocated by the incessant hallucinations, Crystal attempted suicide.
“I couldn’t stand living with the voices any more,” Crystal says. “They were calling me horrible names and they told me I’d be better off dead.”
Fortunately, the prescription pills Crystal took merely knocked her out for a few hours. When she admitted what she had done, her friends checked her into the Tri-County Crisis Stabilization Center. A 10-bed clinic located inside Charleston Center, near the Medical University of South Carolina, the stabilization center is designed to divert hospital stays. Patients can stay for two to four days, receiving group therapy and medication. Opened in 1999 as an outreach of the CDCMHC, the stabilization center was the first “hospital diversion” program of its kind in the state. DiNovo estimates that the stabilization center has diverted about 2,650 people from area hospitals. The program is so successful that area hospitals actually contribute to its funding, according to DiNovo.
For Crystal, the stabilization center was a godsend, helping her through the days following her suicide attempt. But when her time there was up, she still wasn’t mentally prepared to cope with her illness and it would still be another week before she could be seen at the mental health center.
Just three days later, Crystal again attempted suicide. Her friends took her to the emergency room and she was then admitted into the Institute of Psychiatry at MUSC, which is set up to accommodate patients for longer periods of time than the stabilization center.
“I needed to see someone right away,” Crystal says. “I needed individual therapy, which I didn’t get at the stabilization center, and I needed it immediately. If I had been able to get my appointment at the mental health center moved up, things might have been different.”
Crystal stayed at the institute for nearly three weeks, receiving individual and group therapy and medication for schizophrenic tendencies and for substance abuse.
Like Crystal, thousands of people with mental illnesses suffer from substance abuse problems. It’s not always clear whether the mental illness prompts the substance abuse or vice versa, but either way it’s more common than not for the two to go hand in hand. DiNovo says of the 2,800 adult patients treated at CDCMHC who suffer from serious and persistent mental illness, more than 70 percent also suffer from substance abuse. She estimated the same type of dual diagnosis for those people being treated in substance abuse facilities.
The problem with dual diagnosis is that, with the exception of the Institute of Psychiatry, at most facilities there isn’t a clear-cut way to treat patients for both illnesses. First, usually both Medicaid money and state funding for the state’s mental health centers can’t be spent treating substance abuse. Likewise, funding allocated to Department of Alcohol and Other Drug Abuse Services can’t be used for psychiatric treatment. This results in patients having to go back and forth between two or more facilities for treatment.
“To expect a person with an addiction and a mental illness to go back and forth between two agencies is ludicrous,” DiNovo says. “It’s difficult enough to come and get treatment in the first place.”
The problem, like so many others, boils down to lack of funds. DiNovo says her staff could be more than capable of treating substance abuse as well as mental illness — if they had the proper training.
“Clinicians on both sides have all had the same schooling and are very capable of treating both mental illness and addiction,” DiNovo says. “It’s just that they have different areas of expertise, and without proper training outside their area, they don’t have the confidence to cross over from mental illness to addiction and vice versa.”
The Charleston/Dorchester center has been able to treat a handful of its dually-diagnosed patients through an intensive case management team project in conjunction with the Dorchester County Drug and Alcohol Commission. But they are able to help just 62 patients out of an estimated 1,960 who could use the treatment.
“It’s just a spit in the bucket,” DiNovo says. “We just don’t have the resources to do more than that right now.”
Treatment programs, while likely the most important concern, aren’t the only issues at hand. Money is lacking in so many areas right now, there aren’t even enough funds to tend to structural repairs in mental health centers statewide.
“There are roofs that need repairing, fire extinguisher systems that need to be installed; we just don’t have the money to do it,” Hutto says.
In addition, both short- and long-term psychiatric beds have diminished in hospitals all over the state. Locally, Trident Hospital, Roper North, and St. Francis Bon Secours have eliminated or greatly reduced the number of beds allocated for mental health patients. This, in effect, increases the number of psychiatric patients in emergency rooms, according to Hutto.
“We’ve got people clogging up emergency rooms; we’ve got people waiting in jail for psychiatric evaluations; we’re lacking in community programs; it’s happening all over the state,” Hutto says.
Charleston is fortunate to have retained more psychiatric beds than other areas of the state, although that may be more of a burden than a blessing. According to Joan Herbert, administrator for the Institute of Psychiatry, the institute, which has not eliminated any of its beds, is constantly providing spaces for uninsured psychiatric patients from other areas of the state.
“On any given day, we’re having to turn people away because our beds are full,” Herbert says. “We have people in our Charleston emergency rooms who have to go to Beaufort to be admitted into the hospital because we’re full of people from Greenville, Spartanburg, Florence — people from all around the state.”
Not until money is reinvested in mental health programs will this crisis be diverted, Herbert says. She believes there is a common misunderstanding and lack of education in society about psychiatric and substance abuse disorders and how treatable they are.
“There aren’t a whole lot of people who are willing to go to bat for people with psychiatric disorders,” Herbert says. “But we need to reinvest money to bring back these programs. The ultimate solution has to be that the quicker people can get access to services, the more likely they are to avoid a trip to the emergency room or hospital.”
Private institutions, like Palmetto Lowcountry Behavioral Health, a mental health facility in North Charleston, are feeling the pinch as well. Palmetto relies heavily on Medicare funds and state grants to help cover the cost of uninsured patients treated at the facility. Those funds have diminished over the last couple of years and because the public mental health centers are in such dire straits, the number of uninsured patients has increased, just as at the Institute of Psychiatry.
“We have a moral as well as statutory obligation to treat anyone, regardless of ability to pay, who walks through our door,” says Daniel J. Body, chief executive officer of Palmetto Behavioral Health System, the parent entity to Palmetto Lowcountry Behavioral Health. “The resources historically available to providers to be reimbursed for those services, through Medicaid and the various grants and state funding, have significantly diminished, effectively creating an unfunded mandate and financial burden on the area providers.”
Body praises all the mental health facilities in the area — including the CDCMHC, the emergency rooms of local hospitals, the Charleston Center, and the Institute of Psychiatry, saying that, although in some aspects these providers may be viewed as competitors, they also complement each other well and do their best to collaborate for the common good of their patients.
“If we find we have someone at Palmetto with a situation we can’t treat, we work with the other provider stakeholders to find out where they might receive the most appropriate treatment,” Body says.
Still, no amount of cooperation can account for the fact that not one of the facilities has a budget it’s comfortable with.
“We have a solid provider infrastructure in place here in the Lowcountry — it’s just limited by the lack of financial resources to adequately support the need,” Body says.
Staying the course
In an effort to regain some of those financial resources, the state Department of Mental Health has created a budget proposal that, if approved, will open new hospital beds throughout the state for short- and long-term stays, including specific beds for patients with dual diagnosis. Most of these requests are for hospitals and centers in the Midland and Upstate, rather than the Lowcountry, but if granted, this will take some pressure off of emergency rooms around the state, as well as private centers like the Institute of Psychiatry and Palmetto Lowcountry Behavioral Health.
Another possible source of relief could come from the pending sale of the 178-acre Bull Street mental health campus in Columbia, the site of the now-defunct state mental hospital. The sale could generate as much as $32 million, according to an article that appeared in The State on Oct. 8, although the actual number could be much higher or lower. While Hutto says much of the talk surrounding the sale of this property is speculation, he hopes some, if not all, of the money from the sale will go to the Department of Mental Health. State Attorney General Henry McMaster has spoken out in support of putting the money from the sale back into the Department of Mental Health. According to Trey Walker, spokesperson for the attorney general, the land was donated to the state for the purposes of opening a state mental hospital. Walker says research into state documents — some 175 years old — led McMaster to believe that the donors’ wishes would be best respected by keeping the proceeds from the sale within the Department of Mental Health.
“In essence, this is a huge public policy issue, because when folks donate property, they do so with the legal understanding that property will be used for what they donated it for,” Walker says. “If a precedent is set with the sale of properties, like the Department of Mental Health’s property, and the money is put back into the (state) general fund or something, there could be a chilling effect. No one’s going to donate if they think their donation isn’t going to be used for what they intended.”
With these options for additional funding pending in the statehouse, all the Department of Mental Health can do is wait and use the resources they have to help as many people as possible. In the meantime, non-profit advocacy groups locally and around the state are doing their part to ease some of the burden. The South Carolina Mental Health Association, a nonprofit advocacy organization based in Columbia, works at the state level to lobby state government for mental health-related issues, such as the sale of the Bull Street property. The association also provides services for mental health patients in communities statewide, including depression screening, support groups, housing, and assistance with budgeting and paying bills.
“We try to provide programs that fill in the gaps where the mental health centers are strapped,” says Executive Director Joy Jay.
While the association hasn’t had a presence in Charleston for about seven years, a newly formed chapter plans to create programs in the Lowcountry similar to those being run statewide. Susan Weinstein, who has been a mental health professional in the Lowcountry for 16 years, is heading up the new chapter. Formerly, she was chief executive officer for Palmetto Lowcountry Behavioral Health and worked for two providers that were in the area before Palmetto — Charter and Fenwick Hall Hospital.
“It’s hard to start a nonprofit organization right now, with so many issues throughout the world that need people’s support,” Weinstein says, “but this is important and I hope people will see that this can benefit so many people in this area. Charleston-Dorchester-Berkeley is such a big area not to have a mental health association active in the community.”
Weinstein is in the process of meeting with Lowcountry mental health professionals to see “where the gaps are that need filling.” She plans to begin by forming support groups for dually-diagnosed patients. She will expand the programs from there depending on the needs of the Charleston-area and the financial support available. She hopes to implement a program to help with bill-paying and budgeting for the mentally ill, as well as a suicide prevention program, depression screenings, and a “Santa’s Helper” program to purchase holiday gifts for children with psychiatric disabilities.
The National Association for the Mentally Ill is another organization in the Lowcountry that provides support groups for the mentally ill and their friends and family. NAMI also holds educational workshops and other community events in an effort to break down some of the social stigma associated with mental illness.
“One in five people are affected by mental illness,” says Beth Tufts, Charleston NAMI president. “You’ve probably talked to someone today with a mental illness and you’d never know it. You can’t put a face on mental illness.”
Tufts, like Lloyd, proves that when the system is adequately funded, it works. After a long battle with bipolar disorder, Tufts is able to live a productive life relatively free from the debilitating effects of her illness. But without proper treatment, Tufts says there is a good chance she would not be alive today.
“I had a suicide plan for years,” Tufts says. “I just thought it was normal for everyone to have a plan like that, just in case life got too difficult. Every day for me was a struggle.”
Now Tufts facilitates support groups where she shares her story in the hope that she can encourage others to seek the same type of assistance that saved her life. Support groups like these do help, and so does the other work from NAMI and the Mental Health Association. But in the meantime, while lawmakers wrangle with budgets and mental health facilities continue to flounder, people like Crystal will continue to fall through the cracks, not getting help, and living each day in desperation.