Part I of a four-part series looking at the sorry state of treating the mentally ill — beyond warehousing people in institutions or prisons — and the tentative efforts to improve the situation. Also see Part II, Part III and Part IV.
When David Eldridge was finishing his senior year of high school, one of his teachers said to his mom, Ann: "He is bright, but his mind is disorganized."
Looking back, Ann Eldridge wishes she had paid closer attention. She was a psychiatric nurse at the time; still she didn't see the warning signs. Now, 32 years later, she watches her son struggle with severe schizophrenia and wonders if things would be different if they had been able to diagnose him sooner.
Even with all of today's medical advances, recognizing, diagnosing and treating the severely mentally ill in this country takes an average of 10 years, experts say. Almost without exception, they are 10 years of heartache and frustration for the mentally ill and their families. Add to that lack of funding for adequate care and treatment of the mentally ill, nearly a quarter of whom end up in the criminal justice system, and you have a recipe for disaster.
"Since 1990, I don't know of a single state that's doing a better job now than before," said Dr. E. Fuller Torrey, likely the nation's foremost expert on severe mental illness and a tireless advocate for improved services. Twenty years ago, he said, several states were leading the nation in the services they provided, notably New Hampshire and Wisconsin.
Now, Torrey is more discouraged than ever. The latest of his 11 books on severe mental illness, The Insanity Offense, details what he calls a disgraceful lack of care nationwide for the mentally ill. The book, published in June, claims society as a whole is endangered by this lack of care.
"Certainly there are some nice programs, for example in Ohio, because it has excellent leadership committed to doing something for the seriously mentally ill," said Torrey, who directs the Stanley Medical Research Institute, the largest privately funded center for research on mental illness. Torrey also founded the national nonprofit Treatment Advocacy Center, which fights for changes in mental health laws to improve services to the mentally ill.
No Traction for Reform
According to a 2003 national report by the president's New Freedom Commission on Mental Health, mental illnesses rank first among illnesses that cause disability in the United States, Canada and Western Europe. In any given year, between 5 and 7 percent of adults suffer from a severe mental illness. Additionally, one of the preventable consequences of untreated mental illness is suicide, which causes more deaths each year than homicide or war, according to the World Health Organization.
The annual estimated cost of treating mental illness in the United States is $79 billion, of which $63 billion is due to lost productivity. Indirectly, mental illness costs $12 billion in lost productivity due to premature deaths and $4 billion in productivity losses for those in jails and prisons and for the time of family members who care for their mentally ill loved ones.
Nearly everyone involved in the mental health system in this country agrees it's broken. Few agree on how to fix it. The issues are myriad and complex. Diagnosis is difficult, and even with a relatively accurate assessment, finding the right combination of drugs and psychotherapy for each individual is a matter of trial and error over a long period of time. Many of those who suffer from mental illness refuse to accept they are ill, so getting them to agree to treatment is iffy, at best. Many live on the streets, unable to cope with or stay in "normal" housing.
After 40 years of "reform" legislation, many of the severely mentally ill are in prisons and jails — by most estimates about 10 percent of more than 2 million people incarcerated. Federal and state funding for services through county mental health departments has declined as the prison and jail budgets have grown. Small glimmers of hope offered by a handful of successful programs are eclipsed by the haphazard and bureaucratic way in which services are doled out by individual counties.
David Eldridge's story is typical. When he was 16, his parents began to notice shifts in his behavior. "It was so subtle. We said, 'Oh, it's just adolescent stuff,'" Ann Eldridge said. "At the very end of his senior year, I knew something was wrong."
A social kid involved with his high school wrestling team, he started to withdraw. David was having trouble listening and processing information. He started to mistrust authority. And he would talk to himself and laugh at inappropriate times, his mom said. They discovered he was smoking a lot of marijuana. Today, studies show a strong connection between schizophrenia and pot smoking. The drug masks the symptoms, particularly the voices that many sufferers hear in their heads. The latest research indicates a possible causal connection — that smoking marijuana may actually increase risk of developing schizophrenia.
"By the time he was 18, his schooling had really suffered a lot," said Eldridge, a member of the Santa Barbara County (California) Mental Health Commission. She has also been active for many years with the nonprofit Santa Barbara Mental Health Association board and with the National Alliance on Mental Illness. David graduated from high school "by the skin of his teeth" and even looked into attending community college. But he didn't make it through registration. Instead, he enlisted into the service. He made it through boot camp in Missouri, but within months he was honorably discharged.
Then he ended up in jail — five times. "The first time or two he was in jail, we didn't even know about it," Eldridge said. Finally, he ended up in the county psychiatric health facility. David was shopping in a department store one day and couldn't decide what to buy. After several hours, a security guard threw him out of the store and told him not to come back. Agitated, he went to the local hospital, but they wouldn't see him. So he walked back uptown, and at the intersection of a busy highway, David flung himself onto the hood of a woman's car.
Now 50, David lives alone in an apartment. He walks to the 7-Eleven every day to buy his dinner. He has no friends. People shy away from him, like he's a pariah, Eldridge said. He took medication for a brief time, while he was on probation for one of his infractions. But it's been years since then, so he manages, day-by-day, alone with his voices and his psychoses.
When the Ill Resist Treatment
In a perfect world, David would be in a stable, supportive, community-based program. But he's resistant to treatment, which is at the root of much of the disagreement in how to treat the mentally ill.
Laws passed in the late 1960s and early '70s in California — and emulated in states across the country — forced the closure of the state mental institutions but also promised state funding for community-based mental health programs (the Lanterman-Petris-Short Act). Much of that funding never materialized, and counties were slow to implement programs to serve the mentally ill who were suddenly thrown into communities without support.
At the same time, new laws in many states gave the mentally ill the right to refuse treatment. Based on stories of mistreatment in the mental hospitals, advocates argued that patients deserved to have input into their own treatment and that they shouldn't be compelled to take medications that may or may not, in the long run, be good for them.
While psychotropic medications have improved over the years, early renditions had terrible side effects. They dulled the senses and caused serious weight gain; some over time created an irreversible condition called tardive dyskinesia, involuntary tics that are almost as off-putting to a stranger as some of the symptoms of mental illness. Many patients wouldn't take the medications. Or, if they found a drug that worked — that calmed the voices — they would decide they were cured and quit taking it. After several weeks they would spiral — once again — into serious psychosis.
The stigma attached to mental illness also prevents many people from being diagnosed and treated.
"We assume people choose their actions," said Jan Winter, whose son was diagnosed in his 20s with schizophrenia. That someone may be acting a certain way because of a brain dysfunction, a chemical imbalance, is hard for people to accept, she explained. So when someone acts erratically, we assume it is deliberate. If it is contingent with illegal behavior, the immediate reaction is from law enforcement, not the health care system.
Also, for family members, it's hard to accept that someone they love may be mentally ill, and there's shame involved.
Often there are warning signs, but no one pays attention. That was the case with Seung-Hui Cho, who in April 2007 killed 32 students and professors and wounded many others at Virginia Tech University, before killing himself. Cho had a long history of mental instability and was known to health care and university officials. But no one took steps to do something about his threats until it was too late.
Virginia, like most states, changed its laws in the 1960s to prevent the forced commitment and treatment of the mentally ill. Essentially, someone has to be considered a threat to him- or herself or others to be involuntarily committed. That law contributed to reluctance on the part of Virginia Tech officials to act with regard to Cho. After the shootings, a state-convened panel said Virginia Tech's mental health services had failed miserably and that officials had incorrectly interpreted privacy laws. It also said Virginia's mental health laws were "flawed" and its mental health services "inadequate."
"For years, the risk of misdiagnosing was what kept people from moving to do something," said Annmarie Cameron, executive director of the Santa Barbara Mental Health Association. The nonprofit group provides housing and programs for the mentally ill, as well as support services for families.
The Mental Health Association has watched funding levels fluctuate wildly over the past 30 years in California. After the Lanterman-Petris-Short Act, there was a period of confusion. Counties struggled to set up the community-based programs that were supposed to replace the mental hospitals, said Caryl Willard, a former mental health official and consultant to California agencies and counties on mental health fiscal issues.
Then, in 1978, Californians rolled back property taxes through Proposition 13, and funding for mental health programs began to dry up. By the mid-1990s, state money that might have supported effective mental health prevention and treatment programs was being funneled into the criminal justice system to deal with an influx of mentally ill inmates. Many more mentally ill people ended up on the streets, homeless and destitute. As estimated 25 percent of the nation's 672,000* homeless men and women are mentally ill.
Cautious Good News
In California, there is cautious good news. Voters approved Proposition 63 — The Mental Health Services Act — in 2004, which created a 1 percent tax on the wealthy to provide funding for unmet mental health needs.
Counties have finally begun receiving money from Proposition 63, and it holds the promise of substantial dollars in coming years. For example, in Santa Barbara County, the 2007 allocation of Proposition 63 funding was a little more than $5.5 million.
"I expect the next decade for mental health to be a very exciting decade," Willard said. But it will require the state to focus on outcomes-based results. "It's going to take a long-term effort."
The bulk of funding for mental health services comes from state and federal funding.
"The counties pay very little in the way of funding, but they decide where the state and federal dollars go," Willard explained.
Santa Barbara County became a state pilot-program county with the passage of Senate Bill 900 in 1984. Essentially, it means the county negotiates with the state for the amount of dollars it will receive for mental health services each year.
That has meant improved services, generally, for Santa Barbara County. But mental health professionals and families say it's still inadequate.
Programs are structured in such a way that there is a "silo" effect. If one is mentally ill, there is one pot of money and thus specific programs for that. And there are programs for drug and alcohol abuse. But if one has alcohol or drug problems in addition to mental illness — what is commonly called "dual diagnosis" — there are no programs that treat both, even though studies repeatedly link the two.
"Locally, I would say that only in the past four or five years has there been a movement toward integrated services, and it is far from complete, even though it is generally acknowledged," Winter said. "I think that evidence-based practices require integration. I have sometimes felt on the mental health side, in particular, many clinicians believe that the problems of substance abuse in persons with mental illness are too intractable, to the point of not being creative and innovative in developing programming for this or even referring to and helping clients establish a good connection with such programs."
In the end, helping the mentally ill needs to be seen as a public health problem, Cameron said. People with mental illness tend to have more physical health problems. They live on average 25 years fewer than their peers, Cameron said. Because of limited access to health care, the mentally ill suffer an increased rate of cancer, lung disease and other illnesses. They lose their teeth from poor hygiene.
And they fall through the cracks.
In New Hampshire earlier this year, 52-year-old Linda Bishop died of starvation in an abandoned farmhouse. According to the Treatment Advocacy Center, her daily journal indicated that in her last days she had eaten only apples from a nearby orchard and melted snow.
Bishop, who had a long history of severe mental illness, had been treated for bipolar disorder and psychotic episodes at a New Hampshire hospital for almost a year and then was released into the community. She took up residence in the farmhouse and died three months later. Her family says she managed well when she was taking her medication but deteriorated rapidly when she went off it. During her final hospitalization, TAC reported, a judge denied a request to have a guardian monitor and help her take her medication.
There are some bright spots. A few innovative programs around the country are showing promise. A handful of states, notably Ohio, have made great strides in improving services to the mentally ill, according to NAMI. Ohio's success is largely due to strong leadership at the legislative and judicial levels of state government. Additionally, families and those who have mental illness have been powerful advocates for change.
Internationally, countries like Australia and New Zealand have revamped their health care systems to put into place preventive programs that are beginning to pay off. The mentally ill are being identified sooner and are receiving treatment quicker.
In recent weeks, two long-hoped-for developments in this country buoyed mental health advocates: First, the House passed legislation that restores portions of the Americans With Disabilities Act guaranteeing equal access to housing for the mentally ill that were thrown out in earlier court challenges. That bill now moves to the Senate. Then, last week, a new law was approved that will force health insurers to offer coverage of mental illnesses equal to that offered for physical illnesses. The so-called parity legislation had been in the works for more than 20 years and benefited from being in the right place at the right time. Lawmakers needed a bill to which the historic economic bailout measure could be attached, and the parity bill was chosen.
Still, care and treatment of the mentally ill in the United States remains an embarrassment. Resolving these problems will take the combined efforts of the medical and social services communities, family members and, most important, politicians, advocates say.
* An earlier version of this story cited an out-of-date figure of 500,000 homeless.
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