Despite the unanimity that the system is broken, few agree on what will fix
By: Marcia Meier |
November 14, 2008 | 03:26 AM (PST) |
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.
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
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
Much of that funding never materialized, and counties were slow to implement
programs to serve the mentally ill who were suddenly thrown into communities
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.
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
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.
attached to mental illness also prevents many people from being diagnosed and
“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
because of a
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
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
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
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
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
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
of the nation’s 500,000 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
“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
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
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
– 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
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
And they fall through the cracks.
In New Hampshire earlier this year, 52-year-old
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.
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
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
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.
Reproduced from http://www.miller-mccune.com/article/774