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Blamed and Ashamed: The Treatment Experiences of Youth With Co-occurring Substance Abuse and Mental Health Disorders and Their Families
Bert Pepper, MD
TIE, Inc., 126 N. Main Street, New City, NY 10956
As a public health physician and psychiatrist who has described the
development of people with co-occurring mental health and substance
abuse disorders over the past twenty years, I was honored to
participate in the session, Blamed and Ashamed, at the recent
Federation’s Annual Conference. The presentation took place in
Washington, D.C., on December 2, 2000. I am pleased to recap my
remarks for the published report.
When I first read the draft report of this project I was astonished
to find how closely the findings, produced by focus groups of
adolescents with co-occurring disorders and their families, matched
my own work. The material I have gathered from research and
clinical experience dovetails perfectly with the findings and recommendations
of the focus groups.
What is the big picture?
There are thousands of adolescents and young adults across
the United States who, by their behavior, have earned tickets of
admission to hospital emergency rooms, homeless shelters, substance
abuse treatment programs, psychiatric hospitals, and jails.
Many go back and forth in a confusing zigzag, never staying very
long in any one place. Despite the best efforts of each agency, not
one of them, working alone, can meet the complex needs of these
young people. They live with a mixture of mental health problems,
alcohol and other drug abuse problems, health problems, immaturities,
broken relationships with families, disrupted schooling, and
behavior that disturbs the community and is often technically
criminal.
How many people are affected by co-occurring
disorders?
The National Co-Morbidity Survey, headed by Dr. Ronald
Kessler in the early 1990s, indicated that there are about 10 million
adults who suffer from at least one mental health and at least one
substance abuse disorder. Treatment is often unavailable. When it
can be found, it is usually uncoordinated. We need to focus treatment
so that it is integrated: humane, family-inclusive, and clinically
effective. Treatment of either disorder alone does not work.
Treatment integration is essential, because the commonest cause of
mental health relapse in this population is continued use of alcohol
and other drug abuse. AND, the commonest cause of relapse to the
use of alcohol and other drug abuse is untreated mental health
problems, such as panic-anxiety and depression.
Today, dealing with co-occurring disorders is an every day
problem for families, schools, the mental health system, the substance
abuse treatment system, the courts and the jails, But it is
only recently that the interactive nature of these problems has
begun to be recognized.
- In the 1960s and 1970s the treating agencies denied that co-occurring
mental health and alcohol and other drug abuse
problems existed.
- By the 1980s there was general acknowledgement that the
problem of co-occurring disorders did, indeed, exist.
- By the 1990s mental health agencies were referring the
problem to substance abuse agencies, while substance
abuse agencies were referring the problem to mental health
agencies. Troubled youth and their families were getting a
runaround.
- In this new Millennium we are just beginning to see that
providing effective, humane integrated treatment for these
interacting disorders is a problem for our whole human service system, for our whole society. We have met the problem, and Pogo says it is all of us.
What are the problems today?
- Agencies receive money from separate sources from mental
health and substance abuse agencies, at the federal, state,
and local levels. In many cases, conditions attached to the
spending of these funds makes it difficult or impossible for
treatment to be integrated for the individual with co-occurring
mental health and alcohol and other drug abuse problems.
- There are separate agencies for mental health and substance
abuse at federal, state, and local levels. Their level of
cooperation and collaboration has been poor, and is only
now just beginning to improve.
- The different professional jargons in mental health and in
substance abuse make it difficult for treating clinicians to
communicate with each other. This causes each agency to
want to remain separate, and to avoid responsibility for the
person with multiple problems.
- Society stigmatizes people with mental health problems. It
separately and differently stigmatizes people with alcohol
abuse problems. And society’s stigmatization of people
with problems with cocaine and marijuana are yet again
different. When the person with co-occurring problems
gets pushed into the criminal justice system because of
ineffective treatment in the community, an additional
stigma is tacked on. The person who has been marked as a
criminal has a greater burden to bear, as s/he struggles to
find an honorable place in society.
- Mental health and substance abuse agencies want to do
what they know how to do. Their staffs like to do what
they were trained to do. Change is difficult.
- As a result of many of the above factors, each agency is
likely to reject change because, “We’ve always done it this
way!” or,
- “We’ve never done it that way.”
What are administrators doing?
In government bureaus and at the service agency level,
officials responsible for public policy covering mental health and
alcohol and other drug abuse services tend to put forward the
following kinds of arguments:
- "We know that what is being done now doesn’t work."
- "But let’s not set up a new system for co-occurring disorders."
- "That would be too costly."
- "Don’t ask my agency to take on the task."
- "That would further overburden us." and
- "We are already doing all we can!"
Who gets hurt by current policies and procedures?
- Troubled young children who, if their mental health needs
are not met promptly and effectively, will probably selfmedicate
with alcohol and other drugs.
- The majority of emotionally troubled adolescents, because
in addition to their mental health problem, they are likely to
also have an alcohol and other drug abuse problem.
- The majority of people with schizophrenia, who also have
an alcohol and other drug abuse problem.
- The majority of people with manic depression, 60% of
whom have an alcohol and other drug abuse problem.
- Perhaps 40% of people now in substance abuse treatment,
who are at risk of substance abuse relapse because their mental health problems are not being addressed.
Who benefits from the current situation?
- The prison-industrial complex, as money from government
budgets for health, mental health, social services, and
education gets sucked out of those budgets, to pay for the
construction and staffing of more jails and more prisons.
What are the facts? What are the numbers?
- The mental health treatment system has been radically
downsized. In 1955 the nation had 559,000 public mental
health hospital beds. By 2000 the nation had only 60,000
beds left.(Figure 1)
- During the past forty years the population of the country
has risen by 100,000,000 people.
- The few remaining beds must serve many more people.
That is why it is hard to get anyone into a hospital, and
even harder to keep them there for more than a few days.
- Even if a bed is available, restrictive managed care payments
for hospital care makes it virtually impossible for
hospitals to keep patients long enough to treat them.
- We used to have too many beds and over-hospitalization:
now we have too few beds and under-hospitalization.
What has happened to our jail and prison
capacity?
- In 1972 the total capacity of all U.S. incarceration facilities—federal, state, and local jails and prisonswas under
200,000.
- In the year 2000 the capacity reached 2,000,000!
- And, they are full:
- Jails are like sports stadiums:
- Build them and they will come!
The National Co-Morbidity Survey, and children:
As noted before, Dr. Kessler’s survey gives us our best national
data regarding mental health and alcohol and other drug
abuse disorders. The survey data suggests that:
- Between 8 and 11 million persons in the United States have
at least one mental health and at least one substance-related
disorder today.
- The mental disorder developed first in more than 85% of
these people.
- The median age of onset for the mental disorder was 11.
That is, of these approximately 10 million people, 5 million
developed their mental health problem at age 11 or older,
and 5 million developed it at age 11 or younger!
- The median age of onset for the substance abuse disorder,
depending on geography, ethnicity, and gender, was somewhere
between 17 and 21 years of age.
What are the implications of these disturbing
numbers?
They tell us that co-occurring disorders usually begin in
childhood. Whatever the reasons, millions of Americans develop
mental health disorders during childhood. The fact that millions go
on to develop an alcohol and other drug abuse disorder some years
later—usually substance abuse—suggests that they are selfmedicating
their depression, anxiety, confusion, disturbing conduct,
and so on. Would providing adequate early treatment for
these children be an effective means of substance abuse prevention?
It seems likely that if we reached more children with mental
health problems early we would do a good deal to reduce problems
of alcohol and other drug abuse. Remember, only one in five
children with a mental health disorder gets treated today.
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