BLAMED AND ASHAMED BLAMED AND ASHAMED

The Treatment Experiences of

Youth with

Co-occurring Substance Abuse

and

Mental Health Disorders

and Their Families

Federation of Families for Children’s Mental Health

and

Keys for Networking, Inc.

Federation of Families

for

Children’s Mental

Health
BLAMED AND ASHAMED BLAMED AND ASHAMED

The Treatment Experiences of

Youth with

Co-occurring Substance Abuse

and

Mental Health Disorders

and Their Families

Federation of Families for Children’s Mental Health

and

Keys for Networking, Inc.

Federation of Families

for

Children’s Mental

Health
This document is not copyrighted. It is the hope of the Federation of Families for

Children’s Mental Health that this information will be useful and that readers will

photocopy and disseminate the materials to maximize their use. Please give the

Federation credit with the following recommended citation:

Blamed and Ashamed, Federation of Families for Children’s

Mental Health. Alexandria, Virginia. 2001

Blamed and Ashamed

Funding for this project was provided by the Substance Abuse and

Mental Health Services Administration of the Department of

Health and Human Services.

Copies are available from:

Federation of Families for Children’s Mental Health

1101 King Street, Suite 420

Alexandria, Virginia 22314

Phone: 703-684-7710

Fax: 703-836-1040

Email: ffcmh@ffcmh.org

Website: www.ffcmh.org

Federation of Families

for

Children’s Mental

Health
Dear Readers:

It has been both an honor and an adventure for the Federation of Families for

Children’s Mental Health to conduct this study with Keys for Networking, Inc., our statewide organization in Kansas, and a team of outstanding youth researchers. This was a

unique project in which youth took the lead and adults provided training and technical

support. This fine product is a tribute to the resilience, creativity, energy, and intelligence of

the young men and women with co-occurring mental health and substance abuse disorders

who designed the study and did the work. Blamed and Ashamed is a wake-up call to everyone concerned with improving services for children and youth who have both substance

abuse and mental health problems.

We appreciate the cooperation of the Federation state organizations and chapters

throughout the country for their assistance in recruiting individuals to participate in the

focus groups. Mostly we are deeply indebted to the youth and their families who shared

intimate details of their lives so the rest of us would really understand their experience. We

are conscious of their trusting us to use their stories with respect and compassion.

Blamed and Ashamed was presented as a performance by some of the researchers at

the Federation’s Annual Conference in December of 2000. Dr. Bert Pepper, a member of

the SAMHSA Advisory Council and an acknowledged expert on youth with co-occuring

disorders, provided background information on this problem and commentary on our

findings. His valuable remarks are appended to our report. We appreciate Dr. Pepper’s

validation of our work and his support of our recommendations.

We also gratefully acknowledge Dr. Nelba Chavez, Administrator of the Substance

Abuse and Mental Health Services Administration at the time this study was conducted.

Her encouragement, leadership, and financial support made this work possible. We thank

you for listening.

Sincerely,

Barbara Huff, Executive Director

Federation of Families for Children’s Mental Health

THE FEDERATION OF FAMILIES

FOR

CHILDREN’S MENTAL HEALTH

1101 King Street, Suite 420 • Alexandria, VA 22314

(703) 684-7719 • Fax: (703) 836-1040

E-mail: ffcmh@ffcmh.org • Web: www.ffcmh.org
Keys for Networking, Inc.

ii

— NOTES —
Federation of Families for Children’s Mental Health

Table of Contents

Acknowledgements v

Executive Summary 1

Introduction 7

How the Study was Conducted 8

Participants 9

Formulating the Questions 9

Training Youth on Interviewing and Focus Group Techniques 9

Gathering Data 10

Recording Responses 11

Analyzing the Data 11

The Questions 13

Responses to the Questions 15

What We Learned — Conclusions 29

Recommendations 29

Providers 29

Family Members 29

Youth 29

SAMHSA 29

Remarks from Dr. Bert Pepper 43

iii
Keys for Networking, Inc.

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— NOTES —
Federation of Families for Children’s Mental Health

Acknowledgements

We are deeply indebted to the youth and their families who

shared intimate details of their lives so the rest of us would really

understand their experiences. We also appreciate the cooperation of

the Federation’s state organizations and chapters for their ongoing

support and a their assistance in recruiting individuals to

participate in the focus groups.

The youth researchers, the Federation of Families for

Children’s Mental Health, and Keys for Networking, Inc. wish to

acknowledge Dr. Nelba Chavez, Administrator of the Substance

Abuse and Mental Health Services Administration. Her

encouragement, leadership, and support made this work possible.

We thank you for listening.

v
Keys for Networking, Inc.

— NOTES —

vi
Federation of Families for Children’s Mental Health

1

Executive Summary

This report presents the findings of a two-year project intended to document and summarize the experiences of youth with

co-occurring mental health and substance abuse problems and their

families. The purposes of this study were to offer youth and their

families the opportunity to reflect on and give voice to their experiences, to identify their successes and concerns, and to formulate

recommendations so that a national audience might learn from their

experience and improve services. The work was funded by the

Substance Abuse and Mental Health Services Administration

(SAMHSA) in the U.S. Department of Health and Human Services

and conducted by two family-run organizations — the Federation

of Families for Children’s Mental Health, Alexandria, Virginia, and

Keys for Networking, Inc., Topeka, Kansas.

A unique and key feature of the study was the high ownership

of youth throughout the process. Their control over the study led to

a strong sense of power which was key to establishing the trust and

comfort necessary for participants to think deeply about and honestly share details and feelings about experiences that were very

personal — even painful.

Between 1997 and 1999, over 150 people from California,

Georgia, Illinois, Kansas, Maine, New Mexico, Virginia, West

Virginia, and the Washington, D.C. area were interviewed or

participated in focus groups. They represent a cross-section of

youth with co-occurring mental health and substance abuse problems and their families. Youth participating were from every ethnic

group and socio-economic status and ranged in age from 13 to 28.

They all shared the experience of having resided in both mental

health and substance abuse treatment facilities. Focus groups for

youth and parents were held separately. Once the focus groups

A unique and key

feature of the study

was the high

ownership of youth

throughout the

process.

Please feel free to make copies of this Executive Summary

for distribution to staff, friends, and colleagues — anyone who

cares about youth.
Keys for Networking, Inc.

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were completed, audiotapes were transcribed and a meeting was

held in Kansas City to review and analyze the raw data. The Federation of Families for Children’s Mental Health and Keys for

Networking, Inc. wrote the final report.

The findings of this study are powerful. Tragically, youth with

co-occurring mental health and substance abuse disorders and their

families rarely get the kind of help they need at the time they need

it. Services and supports are fragmented, isolated, and rigid. These

negative experiences, however, direct us to the changes that are

necessary to get better outcomes. Peer-to-peer support for both

youth and families, really accurate and useful information for both

youth and families, and combined treatment that includes families

are necessary. And most importantly, youth and their families want

to be heard and respected. They want a say in deciding what

services and supports they will receive, as well as where and how

they will be provided.

The report’s recommendations are framed in the spirit of

promoting positive change. They focus on how treatment, services,

and supports for youth with co-occurring substance abuse and

mental health disorders and their families are:

• thought about

• designed

• provided

• evaluated

The report’s recommendations are intended to stimulate

everyone who has an interest in this subject to reflect deeply about

what can be done to improve practices and outcomes. Any change

process occurs when individuals take responsibility and start to do

things differently. Therefore, the recommendations are directed at

providers, families, and youth. But they could be applied to a wide

variety of individuals, as well as programs and systems. In addition, the report offers SAMHSA suggestions for activities to fund

that would begin to address the key information and service needs

identified by this study.

Any change

process occurs

when individuals

take responsibility

and start to do

things differently.
Federation of Families for Children’s Mental Health

3

Recommendations for Providers

Listen carefully and attentively and treat youth and families

with respect and dignity.

• Rely on them to guide you in understanding who they are,

what they can do, and what problems they are facing.

• Use what you hear to reach your decisions and make your

recommendations.

Involve youth.

• Actively engage youth in designing and evaluating programs.

• Offer youth access to information, and a voice in the

decisions which get made about their treatment.

• Create opportunities for youth to help others in treatment

and afterwards.

• Create options for youth to use their experience and turn it

into positive growth. Help them reclaim self-esteem.

Make sure families are included. Invite them into the

treatment process.

• Provide whole family treatment throughout the length of

time a youth is in residential treatment to strengthen the

bonds that get broken when children are not living at home.

• Provide or link the family to services after the youth returns

home from treatment.

• Help parents understand the treatment process and help

them learn how to notice their child’s progress as well as

signs of relapse.

• Extend treatment to parents as well as youth.

• Work with families to help them set realistic boundaries

and enforce the rules they can live with.

Offer services and programs that deal with youth in an

individualized way, treat each youth as a total person, and

include the whole family in the healing process.

• Offer choices and include information about the benefits

and risks associated with each one.

• Promote family-child interaction as core to treatment.
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• Focus on the length of time the youth needs treatment

instead of the length of time a family is able to pay for

services or their insurance is willing to cover it.

• Combine substance abuse and mental health treatment—

only focus on one before the other if the drug use is so

serious that youth cannot function.

Deliver usable and helpful information on illness, treatment,

after care, and funding to youth as well as to parents.

• Have friendly staff available to answer questions at convenient times so families can ask their questions.

• Provide easy access to information.

• Develop information specific to “what to do if/when my

child relapses,” so parents, paraprofessionals, and clergy,

listen and help them without treating them as failures.

• Educate youth and parents on the effects and appropriate

recommended dosage for prescription and non-prescription

drugs.

• Include fathers especially; develop programs to inform and

support fathers.

• Educate parents about the symptoms of abuse and the

effects of drugs so they can provide information to their

children and so they will recognize regression when it

occurs.

Develop public awareness of mental health issues and

positive models of treatment to disseminate in schools, to

families, and through youth groups.

• Develop and disseminate press releases showing goodlooking role models taking prescription medication for

mental health needs.

Recommendations for Family members

Get involved and stay involved.

• Listen to what your child is saying. See it from their point

of view. Walk a moment in their shoes.

• Address substance abuse and mental health issues with

your child at the same time. Insist that treatment programs

address both. Know the treatment program, visit the program, and visit your child. Be there and be there often.
Federation of Families for Children’s Mental Health

5

• Support your child in treatment and “hear” what they have

to say about all their problems.

• Praise your son or daughter for making progress and watch

for signs of regression, but remember, regression is part of

recovery.

• Participate in evaluating the program as well as your child’s

treatment.

Educate, educate, educate.

• Tell other parents about mental health/substance abuse

issues and treatment.

• Offer what you know to other families who need your

support and can benefit from your experience.

• Offer your child access to information, and assure that he/

she has a voice in the decisions made about treatment

issues.

• Respect your child’s and your own openness and readiness

for disclosure.

• Read everything and ask for more.

• Ask other parents who have been through this. They know.

Recommendations for Youth

Speak up and be heard.

• Speak out about getting better: what is helping you, and

what you need to make progress.

• Ask your parents to be part of your treatment. Ask them to

learn about the “treatment.”

Get reliable information and share what you know.

• Educate yourself on what prompts regression. Know your

own weaknesses.

• Know whom you can ask for help.

• Ask to mentor or help other young people with problems.

They can benefit from what you have learned and what you

have accomplished.

• Offer your expertise to treatment programs and share your

observations with staff.
Keys for Networking, Inc.

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Recommendations for SAMHSA

Provide peer support

• Fund peer-to-peer youth outreach and network development.

• Fund family-to-family outreach and peer support activities.

Facilitate information dissemination

• Fund a multi-stakeholder process to identify information

that is critically needed by youth and families.

• Fund family-run organizations to disseminate information

in usable formats and use strategies to get it to the people

who need it most.

Support collaboration and integrated treatment

• Fund a multi-stakeholder process to promote collaboration

between the substance abuse and mental health systems,

agencies, and providers.

Fund a multi-stakeholder process to develop and disseminate

guidelines for providers to insure services for youth with cooccurring mental health and substance abuse disorders are fully

integrated and effective.
Federation of Families for Children’s Mental Health

7

Introduction

This report presents the findings of a two-year project intended to document and summarize the experiences of youth with

co-occurring mental health and substance abuse problems and their

families. The purposes of this study were to offer youth and their

families the opportunity to reflect on and give voice to their experiences, to identify their successes and concerns, and to formulate

recommendations so that a national audience might learn from

their experiences and improve services. The work was funded by

the Substance Abuse Mental Health Services Administration in the

U.S. Department of Health and Human Services and conducted by

two family-run organizations — the Federation of Families for

Children’s Mental Health, Alexandria, Virginia and Keys for

Networking, Inc., Topeka, Kansas.

A unique and key feature of the study was the high ownership

of youth throughout. Their control over the study led to a strong

sense of ownership which was key to establishing the trust and

comfort necessary for participants to think deeply about and

honestly share details and feelings about experiences that were

very personal — even painful.

It was a new experience for youth to do this kind of work and

they needed substantial training and support from more experienced adults to carry it out. Throughout the project, both the youth

researchers and the family members assisting them had to work

through the tensions inherent in their different perspectives to

develop relationships which, in essence, transformed the traditional

ways adults and youth relate to each other. The youth were really

in charge. They learned how to exercise this new authority judiciously and understand the consequences of their decisions. The

adults were really not in charge. They learned how to guide youth

A unique and key

feature of the study

was the high

ownership of youth

throughout.
Keys for Networking, Inc.

8

by providing training and support without the adults having the

‘last say’ about how the study would proceed.

A team of youth trained to be researchers designed the questions. They carried out the focus groups and interviews, and they

analyzed the data. Keys for Networking, Inc. and the Federation of

Families for Children’s Mental Health provided support, training,

and guidance, and compiled the information the youth had collected. The youth on this research team came from all over the

country and did much of their work together via telephone conference calls facilitated by a researcher hired to teach them. Familyrun organizations from around the country that focus on advocacy

for children with emotional and behavioral issues assisted by

setting up focus groups and arranging interviews so youth could

collect data from their states.

In the course of doing this study, both the youth and their

parents voiced many stressful, painful, and very personal experiences related to the topic of addressing the needs of youth with cooccurring substance abuse and mental health problems and their

families. The recommendations made as a result of these disclosures cut across class, race, and cultures and are much more than a

simple critique of services. They point the way for policy makers

and practitioners who are committed to achieving better outcomes

in the future.

The youth and families who participated in or worked on this

study took a risk when exposing themselves with their public

testimony. Some youth and their parents were sharing their experiences with each other for the first time during this process. Everyone who took these risks did so because they wanted to help shape

public policy and improve both the mental health and substance

abuse service delivery systems for youth and their families. In

Kansas City, small groups of youth and family members met and

discussed the raw material separately. The responses and conclusions of each group were shared in a manner that protected the

identity of the individuals. In other words, parents could not tell

which comments or experiences their own children had contributed

and youth could not tell what their own family members had said.

We learned much. Tragically, youth with co-occurring mental

health and substance abuse disorders and their families rarely get

the kind of help they need at the time they need it. Services and

supports are fragmented, isolated, and rigid. Peer-to-peer support

Their

recommendations

...point the way for

policy makers and

practitioners who

are committed

to achieving better

outcomes in

the future.
Federation of Families for Children’s Mental Health

9

for both youth and families, really accurate and useful information

intended for both youth and families, and combined treatment that

includes families is called for. And mostly, youth and their families

want to be heard and respected. They want a say in deciding what

services and supports they will receive as well as where and how

the services and supports will be provided.

How the Study was Conducted

The study included a series of activities aimed at: (1) improving the understanding of the needs of youth with co-occurring

mental health and substance abuse disorders and their families; and

(2) providing policy makers and service providers with better

information on how to respond to the needs of these youth and

their families.

Participants

Between 1997 and 1999, over 150 people from California,

Georgia, Illinois, Kansas, Maine, New Mexico, Virginia, West

Virginia, and the Washington, DC area were interviewed or participated in focus groups. They represent a cross-section of youth with

co-occurring mental health and substance abuse problems and their

families. Youth participating were from every ethnic group and

socio-economic status and ranged in age from 13 to 28. They all

shared the experience of having resided in both mental health and

substance abuse treatment facilities. Focus groups for youth and

parents were held separately.

Formulating The Questions

The team of youth researchers began with a series of interstate

conference calls to design the study process and develop questions.

Dr. Melissa Nolte, an independent evaluator and qualitative researcher whose specialty is participatory evaluation, worked with

the youth researchers. Six conference calls were held with 10

youth and 6 adults to decide how to do the study, what to ask, and

how to ask the questions. Questions were phrased differently for

youth and for their parents in order to capture their different perspectives. Yet, the questions for both groups addressed the same

broad areas of experience and explored the same three themes.

• What really worked to help you?

• How were your (or your child’s) substance abuse and/or

Youth and their

families want to

be heard and

respected.
Keys for Networking, Inc.

10

mental health issues addressed in the different treatment

centers?

• What would you change?

Once the questions were developed, pilot focus groups were

held under the supervision of Dr. Nolte and Dr. Jane Adams,

Executive Director of Keys for Networking, Inc. Audiotapes of the

pilot focus groups were reviewed and critiqued by the youth

research team.

Training youth on interviewing and focus group techniques

Drs. Nolte and Adams provided focus group training, eliciting

group responses, and recording information. Ten youth (from

Illinois, Kansas, Montana, Ohio, New York, and Virginia) participated in the focus group training. The training covered six areas:

• Each question was reviewed and its rationale discussed

including examples of “good” answers to each question and

questions to use as probes for additional information.

• Instructions were given to manage the logistics including:

arriving early, arranging seating, handing out questions,

locating restrooms, and other comforts for participants.

Procedures were established to go over all the questions

first, then solicit answers. Everyone was to be asked to

answer, if they elected to “pass” the interviewer was to go

back to them.

• Confidentiality procedures were provided and discussed.

Names would not be used (unless participants specifically

requested) and data would be gathered, so that parents

would be unable to identify responses from their own child.

• Managing problems arising from participant’s discussion

and procedures to refer people to professionals were detailed.

• Instructions for telling participants how data was to be used

were reviewed, including how they could request a copy of

the final report.

• Instruction on the use of tape recorders was provided,

including when to turn them on or off if participants requested to go ‘off the record.’

Confidentiality

procedures were

provided and

discussed.
Federation of Families for Children’s Mental Health

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Each youth who was trained as a focus group leader was

provided with a focus group kit that included everything needed to

conduct the focus group and record the data. The kit included:

• Rules for conducting the focus group.

• Sign up sheets, which were mailed back to Keys for Networking, Inc. so participants could get paid.

• Audio tapes and tape recorder.

• Letter to give to agencies, families, and youth to recruit

participants and explain the project.

• Permission and consent forms with directions on how to get

these completed.

• Confidentiality statements and directions for obtaining

informed consent.

• Self-evaluation form for the focus group leader.

• Postage to mail everything back to Keys for Networking,

Inc.

Gathering Data

Family-run organizations across the U.S. were invited to assist

the youth researchers identify participants and convene focus

groups of youth and family members who had the experience of

both substance abuse and mental health residential treatments.

Trained youth interviewers from this project facilitated the focus

groups with the support of staff from Keys for Networking, Inc.

and the local family-run organizations. There were 10 participants

in each focus group; one third were groups of parents and family

members and two thirds were groups of youth. The youth researchers conducted a total of 15 focus groups, held in California, Georgia, Illinois, Kansas, Maine, New Mexico, Virginia, West Virginia,

and the Washington, DC area. Data from 4 focus groups was

discarded because the individuals participating in the focus groups

did not meet the criterion of having both a substance abuse problem and a mental health disorder.1

 In addition to the focus groups,

Keys for Networking, Inc. mailed questionnaires to ten parents

who couldn’t attend the focus groups themselves but who were

willing to participate because their own child had been in a focus

group. The questionnaires addressed the same issues that were

discussed in the focus groups. Keys for Networking, Inc. received

six competed questionnaires. These responses were added to the

data from the focus groups.

Family-run

organizations

across the U.S.

were invited to

assist.

1

 Since participants in

the focus groups were

recruited by other individuals, agencies, and organizations, the focus group

leaders did not necessarily

know in advance who was

attending. This left open the

possibility that some participants would not have cooccurring disorders and the

experience of residential

treatment.
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Recording Responses

All the focus group sessions were audio taped. The tapes were

transcribed by Dr. Nolte who helped youth researchers at Keys for

Networking, Inc. compile all the raw data into lists of responses for

each of the questions. Youth and parent responses were compiled

separately. Duplicated items were combined.

Analyzing the Data

The research team felt strongly about who was qualified to

analyze the data. They did not want to have some ‘outsider’ or a

person removed from the data analyze it. It was, therefore, decided

to hold a conference to examine the data looking for common and

recurring themes. The conference was held in Kansas City in

October, 1999. Twenty-nine individuals met for two days to review

the information that had been collected, make sense of it, and

develop recommendations.

The participants in the Kansas City meeting were carefully

selected in order to insure that there was a real ‘member check.’

Individuals were selected because they had first-hand experience

with co-occurring mental health and substance abuse disorders and

were astute and courageous enough to speak openly and frankly

about it. In addition to this expertise, participant parents and youth

were selected to insure: (1) geographic distribution and representation from the sites where the focus groups were held; (2) social and

economic mix; and (3) racial and cultural diversity. Youth participants were both in school and out. Some were living with families

and some were not. Some of the young people had children of their

own and some didn’t. Some of the youth had been incarcerated.

Parent participants included an adoptive mother who is a schoolteacher, a husband and wife who are cooks, a mother who works

for a national policy organization, and a mother who directs a state

agency.

The group consisted of 12 youth and 17 adults. Among the

youth, four had conducted focus groups and three had been participants. Among the adults, nine served as workgroup leaders, facilitators, recorders, or provided logistical support during the conference. There were five parents (including three who had participated

in focus groups), and three adults with the experience, training or

skills to provide support and structure for youth when the going

got tough for any of them. These three individuals were available

round-the-clock.

The participants in

the Kansas City

meeting were

carefully selected in

order to insure that

there was a real

‘member check.’
Federation of Families for Children’s Mental Health

13

Before getting started, this group acknowledged that everyone

had strong emotions associated with the subject and that both

youth and parents were anxious about talking about it in front of

each other. The working conference, therefore, opened with low

stress activities to help everyone get acquainted, build trust, and

express anxieties and expectations. Youth and parents anonymously

posted brief descriptions of their hopes and fears related to sharing

this very personal information. These descriptions are summarized

below to illustrate the range of emotions associated with the topic.

These feelings are likely to be present in any setting with youth

and their families where co-occurring mental health and substance

abuse disorders are discussed.

Hopes

I hope to:

• Keep an open mind about others’ experiences

• Hear others’ experiences

• I might touch others with my experiences

• Start something constructive for my life

• Help others feel free to express themselves

• Have a real and profound effect on services for children, youth and families

• Improve services for other young people who need assistance in dealing with

substance abuse and mental health

• Affect policies and make the process smoother for other youth facing substance

abuse and mental health issues

Fears

I’m afraid:

• Of coming forward with all the hurts I’ve experienced

• I will be judged

• I will be embarrassed, frustrated, or say the wrong thing

• I will not touch anyone here. I’m afraid of hurting someone’s feelings.
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The Questions

1. Where would you go to get information about substance

abuse and mental health services?

2. How would you want information distributed to the community (schools, justice department, etc.) about substance

abuse or mental health issues?

3. How has your substance abuse and mental health affected

your family and everyday living?

4. Describe your substance abuse and mental health services?

What could have made those services better?

5. What was the first residential treatment session you received like? How did you want it to be?

6. How could the initial residential treatment interview have

been changed?

7. What kind of residential treatments have you received for

your substance abuse and mental health issues? How were

your substance abuse and mental health treatments combined? How would you combine them if they weren’t?

8. Do you feel that your substance abuse led to your mental

health problems or vice versa?

9. What was your aftercare program like? What did you need

for a stronger aftercare program?

10. What was more important to focus on when you started

your treatment, substance abuse or mental health issues?

11. How did you get into treatment? How did you want to get

there?

12. What decisions would you have liked to have made about

your treatment that were different from the choices you

were given?

13. How were your parents’ views on your treatment needs

different from your own?

14. Which are you more comfortable with, telling people that

you have a substance abuse problem or that you have a

mental health problem?

15. If you were to relapse, who would you tell and why?

16. Did they allow you/invite you to evaluate the services you

received?
Federation of Families for Children’s Mental Health

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Responses to the Questions

There were hundreds of pages of transcripts from the focus groups and interviews. All were

filled with powerful statements about individual experiences, and each had features in common

with many others. The responses to the questions are summarized below and illustrated with

quotations from the transcripts.

Where would you go to get information about substance abuse and

mental health services?

Youth

Youth identified many sources where

they would seek information. These included

professionals or service programs such as

school counselors, narcotics anonymous, or

community mental health centers, as well as

family members and friends. A few did not

know where they would go. In choosing where

to go, knowing that the source had experience

with the issues and was reliable and trustworthy was important.

“I’d go to a friend, or someone with

experience, a peer. I’d go to a counselor at

school.”

“I need someone I can go to as an older

role model, someone I can trust, ‘peer advocate’ someone who has been through this.”

Parents

Parents did not know where to go other

than to agencies and programs that provide

substance abuse treatment or mental health

services. However, they said the information

they got did not help them recognize their son

or daughter was in trouble and needing help.

“There was essentially no information

before our child went to treatment.”

“I looked at church, youth groups, recreational centers, movies, television, and treatment centers for the right information —

nothing fit our situation.”
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How would you want information distributed to the community

(schools, justice department, etc.) about substance abuse or mental

health issues?

Youth

All youth thought other youth were the

best source of information and suggested ways

their personal strengths and talents could be

used to distribute information (i.e., public

speaking, writing poetry, rapping, youth crisis

and warm lines). They advised that brochures,

tapes, public service announcements, and such

should be up-to-date and ‘real.’ They stated

that word of mouth, preferably from peers, is

effective and suggested door-to-door campaigns and personal testimony at rallies and

school meetings.

“I think they just have to listen to my

story. I can give a lot of information because

it’s real. I lost everything and have all these

health problems that follow and all that kind

of stuff.”

“I think they should offer information

about symptoms, services, and programs

everywhere, so we can’t, our parents can’t,

miss it and will have it when we need it.”

Parents

Parents thought parents who have been

through it should educate other parents.

“There needs to be a group of us, of us

normal parents, who have children who were

in trouble so we can relate to each other and

so we can go out and tell other parents they

are not alone.”

About half of them also thought the

schools had a role to play and suggested using

“parents who have recovering kids to talk to

other parents” during drug awareness week

and other school based opportunities for

parents to share information. They also recommended:

“Classroom resource guides so teachers

can incorporate discussions.”

“Internet, school-based health and

mental health centers, youth ministries, and

parent hotlines and information centers.”
Federation of Families for Children’s Mental Health

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How has your substance abuse and mental health affected your

family and everyday living?

Youth

Youth experiences varied. Most reported

that family life was really bad when they were

using drugs.

“It basically tore the family apart.”

“It’s crazy around the house, like she

doesn’t trust me with anything.”

“I’m fighting hurt feelings. My family

turned their backs on me. They gave up on me

because of ignorance, pain, and frustration. I

am angry about that.”

“I just kind of quit everything.”

Some of these young people also acknowledged that their parent’s efforts at

supervision didn’t work.

“They tried locking me up in the house to

keep me away from guys, keep me off the

streets. It didn’t work, it make me madder,

made me run away.”

“She wants to keep me off the streets and

it don’t help. I just keep doing it cuz the weed

has control over me right now and I don’t

listen.”

“They’re trying to help me out, you know.

I respect that, but it’s my life.”

Some youth described parental indifference to their substance abuse or complicity

with it.

“My dad does it too and it’s as long as I

do what I gotta do, he don’t really care.”

“I’m around it everyday, since my mom’s

boyfriend is always getting high downstairs.

She doesn’t really care because she knows

Parents

Parents universally reported dramatic

changes in their family and in relationships

with their son or daughter.

“Ripped it apart.”

“It changes your whole life, it really

does. It changes how you talk to people, who

you associate with, what you do, what plans

you make, and what plans you don’t make.”

“The house is chaotic all the time. We

have no life.”

“It changes every aspect of your life,

emotionally, financially, mentally. We’re all so

busy with my daughter and running her here

and there. There’s no time and no money left.”

Some parents stated that their child’s

substance abuse was actually a symptom of

other serious problems in the family and that

highlighting the drug problems got them to

recognize they all needed help.

“I can’t say that she tore up the family,

but she made the loudest noise and so we

started getting some help.”

Many parents noted the change in their

own social lives.

“Because you don’t know what’s going to

happen tonight, you don’t socialize. You don’t

have friends over, you don’t go other places.”

Many also talked about added activities

and time-consuming responsibilities.

“Balancing caring for the family, caring

for this child, and protecting other children

from getting it is hard.”

(continued) (continued)
Keys for Networking, Inc.

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How has your substance abuse and mental health affected your family and

everyday living? (cont.)

that he gives it to me and my friends sometimes.”

Youth also expressed specific concern

about the impact on schoolwork and especially

on younger siblings.

“It affected our family in huge ways. I am

the bad apple. My mom vows that I will spoil

my brothers and sisters. I have.”

The few youth who felt there was little or

no impact on their family attributed it to their

family not knowing about their problem.

Youth felt punished and abandoned when they

were sent away. They felt “put away, ” as if

they didn’t belong anymore.

“There are meetings four nights a week.

We eat dinner at eleven o’clock at night.”

Parents described deterioration in relationships with their children.

“I just couldn’t trust him anymore, for

anything. He would lie about the stupidest

things, whether he actually brushed his teeth

or not. But it seems to be very, very important

for him to be able to be in control.”

Parents recognized the conflict between

letting their son or daughter take responsibility for their behavior and doing all they could

to support their recovery.

“Protecting vs. letting her take responsibility is a push and pull thing.”

“You try and make it work for them,

which we’re not supposed to do, I know. But

we’re the moms. You do what you’ve got to do

to protect them.”

“I know my daughter has to do it on her

own, but she’s my kid and I’ve gone this far to

keep her alive. It’s hard to just back off.”

Parents also mentioned that the financial

drain, the stigma and shame “were transferred

to the whole family.”

Youth (continued) Parents (continued)
Federation of Families for Children’s Mental Health

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Describe your substance abuse and mental health services? What

could have made those services better?

Youth

The youth talked mostly about their

experiences with counseling — individual and

group or family sessions. Their descriptions of

these sessions were very powerful and also

very negative. Youth felt ‘talked-at,’ ignored,

‘set-up’, blamed, and disempowered by

counselors. Generally it was not helpful.

“It really sucked!”

“The counselor made it seem like ‘Oh,

it’s all your fault. You’re the one starting the

problem with your father’.”

“All I know is I didn’t like it. My mom

and me just sat there fighting the whole time.”

“If your parents were to talk to them

beforehand then they make it seem like everything is against you. It kind of felt like being

set-up.”

“They talked to me for like a half hour

and then the other half hour they talked to my

mom and that didn’t work for me because my

mom would have a different story than I

would. So we need to be in the same room so

like we could talk and she could listen and

understand.”

“I guess he was scared of my dad, cuz

every time my dad would jump in, he would let

my dad take over and say whatever he want.

He just had everybody in there and it didn’t

work. Everybody would talk at the same time;

no one would listen to each other. He didn’t

have control of none of us.”

“They’ll do a family session and they’ll

have everyone go against me. That’s actually

Parents

 Parents described substance abuse and

mental health treatment programs as oriented

toward treatment for adults. No program

successfully involved families in their son’s or

daughter’s treatment.

“The adult substance abuse system is not

prepared to deal with interested or involved

parents, let alone parent advocates. Adult

substance abuse treatments see parents who

are involved as ‘enablers.’”

“Pure AA systems make individual(s)

responsible for actions and consequences.

Young people need support from the family to

put it together. We need help to figure this

out.”

Parents also objected to the separation of

services by the substance abuse and mental

health systems.

“Substance abuse and mental health

need to be addressed as equally important,

inextricably linked. Treatment centers don’t

see them as linked due to system division.”

“We were told we’d have to enroll our

son in one program, finish that, and then send

him away to treatment. Our son was away for

two years and he did not come home recovered from mental illness or substance abuse.

He was a stranger to us.”

Parents talked about their need for information: to know about kinds of treatments, to

know what works, to be involved in planning

the treatment for their child, to be included, to

learn new ways to relate to a family, to know

(continued) (continued)
Keys for Networking, Inc.

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a terrible way to counsel somebody. It makes it

seem like you’re stupid or you’re bad.”

Youth stated that they wanted counselors

who listened to them, who could see their

strengths, who were not judgmental, and who

could advise them about strategies for getting

along with parents or working on their problems.

“I wanted to be listened to. I needed

support. I wanted someone who would hear

both sides, mine and my parents.”

“The thing you don’t want, at first, is to

change. You want them to work with you and

point out the good points, maybe even be on

your side.”

“I wanted the first session to be where it

was just me and him, he would ask me questions, I would tell him how it went. He could

like maybe tell me how I could talk to my

parents, or whatever.”

“ I needed individual and family counseling to help me explore my problems. Then I

needed help working them through with the

family.”

One youth described a drug abuse class,

which she attended for one day.

“It was mostly police stuff like what

would be different kinds of arrest and what

would be a felony and all that stuff about what

would happen. It worked but I really didn’t

want to go.”

Another described an anger management

program.

“It was boring though, like an hour and

half, and I took like ten lessons but I didn’t

learn anything.”

the signs of relapse, to set boundaries.

“They treated me like an interloper. They

made me feel like it was my fault.”

“They didn’t even talk to us until our

insurance ran out. Then he was all ours.”

Describe your substance abuse and mental health services? What could have

made those services better? (cont.)

Youth (continued) Parents (continued)
Federation of Families for Children’s Mental Health

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What was the first residential treatment session you received like?

How did you want it to be?

Youth

Youth emphasized the importance of

neutrality and strength. They want treatment

staff to be fair, focus on the positives (rather

than the negatives which was the general rule),

and be strong enough to keep all sorts of

personalities in balance.

“Whoever is facilitating needs to be

someone with a strong personality and “neutral” and not give in to the aggressive person

in the family.”

“I want them to make me feel like a

person, and not look down on me. It is such a

negative thing and so much focus on the

negative aspects.”

Young people also want the atmosphere

to be more welcoming and personal and they

want their families to participate.

“Youth should be allowed to take someone they are comfortable with to the first

session.”

“I was able to continue counseling and

therapy that fit my needs. However, my family

did not continue their therapy. So it didn’t

work in the end.”

Parents

Parents stated that the whole family

needs help and it is insufficient to focus solely

on one individual — even though that individual may have very great needs.

“While the youth is in treatment, the

family should be getting special counseling,

then everyone should be brought together in

joint counseling. It all works hand-in-hand.”

“Family must participate because family

is affected. There needs to be something set up

for the youth to go into right after treatment.”

Parents also recognize that they need help

in understanding the treatment.

“Parents need to know how to work with

their kids, understand them at their level, and

understand the treatment.”

As much as parents are committed to full

family involvement, they also recognized that

sometimes their sons and daughters need some

private space.

“Allow youth to express issues privately

so treatment is more effective in addressing

the issues.”
Keys for Networking, Inc.

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How could the initial residential treatment interview have been

changed?

Youth

Youth tended to describe their first

interviews as a formal event with a professional asking a lot of questions or someone

filling-in forms that had to be signed. They

would have preferred situations that were

more personal.

“I felt intimidated, bombarded with

repeated questions by the interviewer.”

“I would have [preferred going] one on

one with someone closer to my own age.”

“I got tired of all the questions.”

“They didn’t ask me how I felt about

being there or if I wanted to be there.”

Young people want to be treated with

respect and dignity.

“I’d like to be treated like a person not

just a case or money. Start with sensitivity, try

and get to know us. Be friendly and help.”

“I was strip searched, psychoanalyzed,

and had to take too many tests, too many

questions. I want to be treated like a human

being.”

Parents

Parents characterized half of their initial

interviews as positive and half as negative.

They tended to evaluate the initial interview in

terms of how the interviewer approached their

son or daughter and/or how truthfully their son

or daughter responded.

“[My daughter] just danced in circles

with them — didn’t give them any information,

so they didn’t focus on what they needed to

do.”

“I was very impressed with him [the

interviewer] because he talked on my son’s

level. He wasn’t judgmental or anything. My

son really related to him.”

Parents admitted that they were ‘on

guard’ during the intake fearing they would be

blamed or their child would not be admitted if

they gave ‘wrong’ answers.

“My input was based on the agency’s

perception of me as a parent. I was afraid they

would say it was my fault.”

“Our input was driven by the need to get

the child in treatment and safety rather than

our real issues. Treatment occurred before

they even talked to us.”

Parents would have liked the initial

interview to be less formal, establish communication, and focus on the real issues that

brought them to the facility in the first place.

“The interview needs to be more focused

on the youth’s needs at the time, instead of just

admitting to the treatment program.”
Federation of Families for Children’s Mental Health

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What kind of residential treatments have you received for your substance abuse and mental health issues? How were your substance

abuse and mental health treatments combined? How would you combine them if they weren’t?

Youth

Youth see the inter-relationship between

mental health problems and substance abuse.

They reported that substance abuse treatment

without mental health treatment doesn’t work.

They recommend getting off drugs and combining medication and working on the “real

issues.” They value programs that help them

find out who they are.

“They worked mainly on substance abuse

and I think they should split the time between

mental health and substance abuse because I

really honestly don’t know anyone who has a

substance abuse problem who doesn’t have a

mental problem.”

“I’d first get you off of drugs and then try

to figure out what you were covering up with

your using and go from there.”

“I didn’t want to hear from someone else,

who I was. They basically help you understand.

They really got me to look at myself. The treatment I received was pretty sufficient for both

mental health issues and substance abuse.”

“When you’re in [substance abuse]

treatment you should work on also mental

health issues because a lot of your mental

health issues have to do with drugs.”

Some youth mentioned that lack of

family participation was a problem.

“When I was ordered to treatment, I was

forced to get services. My parents were not.”

“When it was over, I was sent back to an

unhealthy environment, back with parents who

sometimes use, back with parents who knew

nothing about how to help me.”

Parents

Parents stated that their children needed

to be treated holistically as teenagers yet they

described a variety of treatment patterns —

some separate and some combined. These

included counseling, groups, alcoholics

anonymous, self-medication, inpatient treatment, day programs, private psychologists,

and aftercare. Parents talked about the confusion of service fragmentation and how often it

was their own efforts that resulted in combining treatment. Yet, they get no credit and much

blame.

“We need programs that deal with our

child as a whole.”

“It was our responsibility as family

members to put the two together, substance

abuse and mental health. No one even offered

to help us sort this out.”

“We need access to funding streams that

allow us to get services in both areas. We

don’t know when substance abuse is a problem or is the problem mental health? How are

we supposed to know!”

All the parents mentioned the lack of

family participation.
Keys for Networking, Inc.

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Do you feel that your substance abuse led to your mental health

problems or vice-versa?

Youth

All youth stated that their mental health

or emotional problems existed before they got

involved with drugs or alcohol.

“Ineffective interventions with my mental

health symptoms resulted in my substance

abuse.”

“My depression led me to using drugs to

try and work my way out of it.”

“I used substances to forget my problems.”

Some also recognized that substance

abuse exacerbated their mental health problems or brought on new ones.

“My emotional feelings led to my drug

use, but drug use led to a lot of mental health

problems down the road, so its like that vicious cycle they talk about, one thing leads to

another.”

“My substance abuse fed my mental

health problems and made them much worse

than they actually were.”

Parents

Parents generally felt the underlying

mental health problems, largely untreated or

ineffectively treated, led their child to substance abuse. They saw substance abuse as a

form of escape from mental health problems

their sons and daughters did not understand.

They chided the substance abuse system for

refusing to deal with mental health issues.

“Untreated mental health problems led to

my child’s substance abuse.”

“No one at substance abuse even asked

about mental illness.”
Federation of Families for Children’s Mental Health

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What was your aftercare program like? What did you need for a

stronger aftercare program?

Youth

 About a third had no aftercare program.

Comments from those who did were generally

positive but for some, “It was the same — I

hate going.” What works seems to be an

individualized approach.

“They sent a letter in the mail directly to

me rather than my dad or mom, which made

me somewhat important. The fact that it was

personalized was really cool. Or for that

matter, they actually cared enough to write a

letter back.”

“What I personally do, I go to aftercare

once a week, I go to a brief one everyday. And

I have a sponsor who I talked to everyday on

the phone and all my friends are clean and

they’re from my home group.”

“The sessions were all right, at least this

time. The counselor said, ‘Well, you know you

got a real bad temper, your father has a bad

temper, your sister has a bad temper. I guess it

just runs in the family.’ Nothing would have

made them better really, me and my dad just

never talk.”

“What I needed, they gave me, they gave

me a psychiatrist. I just wish that he would

talk longer, that’s all. He just asks me common

questions about how school is and things like

that cause he’s on a tight schedule, cause he

always synchronizes his watch whenever I

speak to him.”

Youth recommendations for stronger

after care include more opportunities to make

‘clean’ friends and to “discuss stuff” related to

Parents

Parents stated that they did not know

what aftercare was. They said there was no

such program and described concerns about

getting aftercare started but generally were

pleased with the services once they began.

“Until I find the right one, I’m just kind

of holding my breath that she can maintain

long enough to get started.”

They mentioned making new friends and

having ‘clean’ fun as being important for their

son or daughter.

“It’s helping more than an intensive

program. It’s getting them involved with

people who’ve been through the program and

who are wanting to stay clean. Because that’s

the most important thing; they’re going to

have to have new friends.”

“Just the camaraderie seems to be

helping more than anything.”

“I’m not sitting in front of a counselor

pouring out my guts, I can go have fun.”

In addition, parents mentioned long

waiting periods, little or no connection between residential treatment and aftercare, and

the adult treatment model that puts full responsibility on the youth and excludes the

family as being obstacles to overcome.

“Young people are expected to take full

responsibility for themselves. I feel that the

service model needs to be revised to support

the youth in making aftercare a success.”

(continued) (continued)
Keys for Networking, Inc.

26

their treatment. They also suggested use of

younger staff and people they could feel

comfortable with and trust.

“I got to two to four meetings a week,

and just going once to aftercare is not

enough.”

“It’s easier to talk to people who are

around your age.”

“Reliable peer or case management

would help.”

Youth also mentioned that they needed

help from their families to get to aftercare

services and this was sometimes difficult.

“The parent as participant-family involvement — is not considered favorable in

aftercare. Youth need support until they can do

it on their own. They are not yet adults.”

What was your aftercare program like? What did you need for a stronger

aftercare program? (cont.)

Youth (continued) Parents (continued)
Federation of Families for Children’s Mental Health

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What was more important to focus on when you started your

treatment, substance abuse or mental health issues?

Youth

Youth were fairly evenly split on whether

their mental health or substance abuse issues

were more important to focus on at the start of

treatment. Those who favored treatment for

their substance abuse problems focused on the

physical danger they were in or their lack of

awareness of their mental health problems.

“If I didn’t get off drugs the right way, I

was gonna die.”

“I wasn’t aware of my emotional problems or anything.”

“Sometimes it’s just overwhelming and

you feel like you’re just on the verge to do

something that might damage you or the

others around you.”

Those who favored treatment for mental

health issues attributed their problems to their

family background or “going through a stage.”

Parents

Parents had difficulty choosing one

problem over the other and for the most part

described how the two interacted and how

both needed to be addressed.

“I kind of thought they went hand in

hand, that as they worked on his substance

abuse, they also worked on his mental health

side to understand why he’s abusing and how

to quit abusing.”

About half the parents stated that their

child’s mental health issues were neglected.

“I felt like they focused more on the

substance abuse, which was a severe problem,

but I don’t think there was enough focus on

the mental health issues, to be honest.”

“She’s got a lot of anger issues and I just

wish they would have worked more on that.”

At the same time, they saw that substance

abuse had to be brought under control in order

for their son or daughter to make progress

with the underlying mental health issues.

“She has emotional problems but they

couldn’t be addressed until she wasn’t on

drugs and she was on drugs because she had

emotional problems. Keeping her structured

and in one place was able at least to keep her

clean long enough to get to some of the problems.”
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How did you get into treatment? How did you want to get there?

Youth

The vast majority of youth were forced

into treatment by their parents or a court. They

all wished they had gone into treatment

voluntarily. However, they acknowledged that

they were resisting treatment at the time.

“At the time I didn’t want to get there but

since I had to go I wish I could have made the

decision on my own to go.”

“My mom kept referring and I kept

putting it off and finally she had me arrested

as a runaway.”

“Once I got in the group and learned

about why I had problems, I wished I had

gone on my own. Being forced into it was a

good thing for me.”

“I would have wanted it to be that they

were acting upon first detection of behavior

they couldn’t understand.”

“I wanted to get into treatment on my

own, but I didn’t. I wanted to go get help with

assistance from someone close to me, like my

mother. She is always there for me.”

Parents

Parents reported three ways their sons

and daughters got into treatment: (1) voluntarily (which rarely happened), (2) enrolled by

parents, or (3) involuntarily through the courts

or social services (sometimes because parents

called the police). All parents would have

liked their child to enter treatment voluntarily.

In addition, parents reported that they did not

have sufficient information to recognize or

understand the depth of their son’s or

daughter’s problems. This made it difficult to

detect until their child did something that

caught the attention of some outside agency

(such as the police).

“I had no information about how to

identify the symptoms of substance abuse. I

didn’t know there was a problem. When I did

get suspicious, there was not enough information to handle the problem. I didn’t know what

to do or where to go!”

Consistently, all parents

indicarted that they would have

liked their child to voluntarily

enter treatment.
Federation of Families for Children’s Mental Health

29

What decisions would you have liked to have made about your

treatment that were different from the choices you were given?

Youth

The underlying theme in all the youth

responses was having choices and having a

say in decisions.

“There was never an alternative or a

choice. Just do it.”

“I wanted to be a participant in the

decision process for my own treatment. My

parents, probation officer, etc. made all the

important decisions. This caused me to go into

the program with a negative outlook.”

Youth would have liked to have chosen

where they were going to receive treatment

and to have had a say about the length of their

stay and have had more information and

preparation for transitions and entering new

programs.

“I would say the decisions I would have

liked to have made were all done before I got

to treatment.”

“I would have liked to chose to go somewhere else or had outpatient treatment.”

“It was difficult to deal with a different

group of people from different areas. There

should be more preparation for that.”

Being able decide about taking medication was very important to youth.

“I would rather have been given a choice

of whether to take medication or not, but no

ultimatum, no alternative, they don’t even tell

that if you don’t take it you get restrained.”

“If I didn’t take, then I’d get restrained.

They treated people like crazed dogs or animals. They give you no choice.”

Parents

The underlying theme in all the parent

responses was having choices and having a

say in decisions. Most of the parents felt they

had not been given any choice of program —

this decision was made by some agency with

authority (social services or a court). Those

who had a choice of programs found it difficult to find reliable information about something that was likely to work for their family.

“System information was driven by the

provider’s needs and not the youth’s or

family’s needs.”

One parent suggested that choices might

not have been a good idea because they were

so overwhelmed and could not have made one.

(continued)
Keys for Networking, Inc.

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They would also have liked more contact

with their families.

“My parents could not be involved

because of the structure of the treatment. I was

told this was my problem.”

 “Families needed to be involved, because once I was treated I returned to my

family.”

What decisions would you have liked to have made about your treatment that

were different from the choices you were given? (cont.)

Youth (continued)
Federation of Families for Children’s Mental Health

31

How were your parents’ views on your treatment needs different from

your own?

Youth

Youth reported that they did not see eye-toeye with their parents — especially at first.

“She was more for it and I wasn’t, see.”

“My parents took my treatment a lot more

serious than me and I’m grateful for that because I probably wouldn’t be clean if they

hadn’t.”

Youth also described their parents as having

expectations that were unrealistic or of being

over controlling.

“My parents thought that as soon as I came

out I had to be this new person and it obviously

never worked. By the end of the last treatment

center, I was ready to make a change and my

parents really supported it.”

“I can’t even go outside and smoke a

cigarette without them asking where I’m going,

what I’m doing. There’s like, no trust.”

“Every time I needed money or something

else it was always up to them to get it. So it just

caused big problems.”

Youth described their parents isolating them

as ‘the’ problem and denying that there was a

family issue to deal with. Involved and supportive families were valued and contributed to the

youth’s progress and recovery.

“My mom and me agreed on everything and

that was one of the biggest factors in getting

through my treatment. It helps when someone

agrees with your views.”

“Family support is a strong issue, and they

have to be involved in the treatment.”

 “There should be some information for the

parents to encourage them to want to be involved.

If the child gives up, the parent or support needs to

want it for them. It’s sad to see the parent give up.”

Parents

Parents reported that they did not see

eye-to-eye with their sons and daughters —

especially at first.

“In the beginning I think she had an

attitude, then she realized that she had to

cooperate to get through the program and

she accepted it.”

“I, of course, wanted something that

could save my child, so our views were very

different. I was willing to make her do

anything. She was willing to get out of

doing anything and that’s kind of where we

were.”

“My daughter thought it [treatment]

was way too long. I thought it [treatment]

was way too short.”

“I was there to break down what was

wrong, what was going on in order to figure

out how to not have it happen any more. He

was of the frame of mind that he didn’t

want to be there, nothing was wrong, and

he most certainly didn’t want me in his

face.”

Parents described how the treatment

separated them from their son or daughter

and failed to effectively involve the family.

“There was no attempt to involve

family, which created a sense of isolation.”

“The program needs to help resolve

parent conflict and heal the family.”
Keys for Networking, Inc.

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Which are you more comfortable with, telling people that you have a

substance abuse problem or that you have a mental health problem?

Youth

Youth were universally more comfortable

telling people about substance abuse problems. They felt that there is a general understanding of substance abuse and alcoholism

but there is limited understanding and great

stigma associated with mental health problems.

“More people understand what using

drugs is about . . . it is more common than

mental health issues.”

“They hear better if you say, “I’m a weed

head, I’m stuck on weed, than “there’s something wrong with my head, I’m going crazy.”

“I’m not really comfortable telling

people any of those things because to me,

people stereotype and put people down if they

have a problem.”

In some cases the youth reported that

they did not understand their mental health

problems well enough to explain them to

others.

“Substance abuse would be what I would

talk about because I really don’t understand

why I’m depressed.”

Youth who were comfortable talking

about mental health issues were getting effective treatment for their problem.

“First I would only talk about mental

health. But I’m pretty open. I feel I can talk

about it because it’s part of my life. I feel I’m

getting help with it so it doesn’t need to be

hidden.”

Parents

Parents said they too were more comfortable talking about substance abuse problems.

Most said they would let their children take

the lead.

“I just have a handful of people that I

talk about it with, because she is so complicated.”

Many parents expressed an active desire

to talk about both mental health and substance

abuse as a way to educate others. All the

parents were willing to reach out to other

families to share their experiences.

“I don’t have a problem telling anybody

anything because I’m proud of what he did [in

treatment] and I would like to be an advocate

to parents, you know — “Don’t do what I

did.”

Parents also mentioned that confidentiality and legal issues sometimes made it difficult

to talk openly. However, they felt it was a

family decision — typically led by their son or

daughter — whether or not any of them would

speak publicly about their experience.

“The issue is if the child is comfortable

with talking about their experiences, it becomes more comfortable for the family.”
Federation of Families for Children’s Mental Health

33

If you were to relapse, who would you tell and why?

Youth

Most youth reported they would go to

family members or supportive and understanding friends. The words they used to describe

the individual they would seek out showed

they recognized the family members who can

be trusted to offer help and support without

judgement. They emphasized trust.

“It is very important to trust who you are

talking to: peer advocates, case managers,

and counselors.”

“If I was real worried about it I’d tell my

mom because I know that she would help me

come up with some ideas of things I could do.”

“My best friend, because he would be

supportive of me . . . he wouldn’t look down

on me.”

“My grandma, because that’s the only

person who really be trying to help me instead

of going behind my back. She be trying to help

me, get me to the hospital or something.”

Youth also would seek out others who

shared their experience and had constructive

advice about making positive change.

“I would tell my best friend because he’s

been through treatment and he knows what

I’ve been through and where I’m coming

from.”

“I would tell my mom because she would

do something and she’s gone through this with

me and all that.”

Parents

Parents almost universally said they

would go to a professional — typically someone with whom they and their child already

had a positive and trusting relationship.

Parents were looking for advice and guidance

about what they were “supposed to do first

and how to make this curable — how to

fix it?”

“I knew Shane was a professional that

would know what to do, and I knew that he

understood her too.”

A few parents would go to close friends

mostly for “emotional support.” One parent

was very clear about who NOT to tell.

“I would not tell my husband’s parents.

They are very close-minded about what you

can do to help.”

But, some families were at a loss as to

where to turn.

“How do you connect with a community

based service when there is no continuing care

and no one to talk to?”

Were you allowed/invites to evaluate the services you received?

Youth

Never

Parents

Never
Keys for Networking, Inc.

34

What We Learned — Conclusions

None of the youth or parents involved in this process had ever

been invited, until now, to evaluate the worth of services they did

or did not receive. Nor had they ever been asked to make any

recommendations for future services. The participants in the

Kansas City conference took time to carefully review and reflect

on the data before identifying several key themes.

All the youth and family members were severely blamed and

shamed by providers and systems when what they needed was

nonjudgmental recognition of their struggle to find caring help and

support. Both youth and their parents pointed out that blaming one

another hurts deeply and contributes to the complex array of

problems they face (i.e., anger, hurt, frustration, lack of services

and support, isolation, disappointment, conflict, etc.). Youth and

their families want and need providers, programs, and systems to

focus on and reinforce the positive and stress the use of their

strengths to overcome or remediate their problems.

Youth with co-occurring substance abuse and mental health

disorders and their families need and want to be treated with

dignity, respect, honesty, and fairness. They want a voice in making decisions about their care and treatment — whether or not to

take medications, where to go for treatment, who to talk with, and

how long treatment should last. Many youth want to get better, but

react strongly to the inhumane way in which they feel they are

treated. They become resistant to participation or, at best, they

‘fake-it’ to get through a program. The result is release from

treatment (after the standard period of time) without any real

change — often resulting in a relapse. Indeed, recovery begins only

after youth and families themselves choose to change their behavior and engage in treatment activities or access programs and

services that meet their needs.

All the youth and

family members

were severely

blamed and

shamed by

providers and

systems when what

they needed was

nonjudgmental

recognition of their

struggle to find

caring help and

support.
Federation of Families for Children’s Mental Health

35

Co-occurring substance abuse and mental health disorders are

inseparable problems and cannot be effectively addressed in

isolation from one other. The current categorical distinctions

reflected in the funding streams and administrative structures for

physical and mental health services, substance abuse services,

social and family services, educational services, and legal services

have prevented youth and their families from obtaining the kind of

comprehensive and integrated treatment they need. Complex

physical, psychological, social, economic, and environmental

factors contribute to the substance abuse among youth with mental

health problems. All these factors must be considered in order to

individually design treatments, services, and supports that will be

effective for any young person and his or her family.

Co-occurring substance abuse and mental health disorders

affect the entire family and cannot be effectively addressed without

including everyone who plays a key role in the child’s life. Conversely, values and attitudes about mental health and substance

abuse, as well as behaviors and relationships among family members, influence how youth and their families seek help and respond

to services. The culture and beliefs as well as the strengths and

problems within a family must be taken into consideration and

should drive the design of intensive treatment and after care services.

Families, regardless of their specific characteristics, are a

permanent part of a child’s life while services and providers come

and go. Youth and their families rarely see eye-to-eye at the crisis

point when they first enter services, however most youth return to

their families and communities after treatment. Unless they find

improvement, they will quickly relapse. Bonds of affection and

trust between youth and families are weakened when they are

separated during residential treatment. Families need help to

maintain relationships with a young person who is temporarily not

living at home, and to create the supportive and structured environment a youth needs to continue or complete their recovery during

aftercare.

Youth often experience serious legal trouble before treatment

for co-occurring substance abuse and mental health disorders

become available. This is too late. Early warning signs go unnoticed or are deliberately ignored leading to escalation in destructive

behaviors. Co-occurring substance abuse and mental health disorEarly warning signs

go unnoticed or are

deliberately ignored
Keys for Networking, Inc.

36

ders, when ineffectively treated, create great stress in the family,

escalate conflicts among parents, children, and siblings; and impair

a family’s ability to intervene appropriately or effectively.

Currently youth treatment programs for substance abuse and

mental health disorders are based on an adult model. The principles

upon which they are built are inappropriate for adolescents who are

not developmentally ready to take the level of personal responsibility required. Furthermore, adult models intentionally exclude

families from treatment planning, implementation, or aftercare.

Youth with co-occurring substance abuse and mental health problems cannot, and should not, be totally independent of their families. They are not finished ‘growing up’ and have not learned all

they need to know about choosing friends, finding and keeping a

job, getting to meetings, and accessing services. Without family

involvement and family support (emotional and financial), most

youth cannot follow through with the requirements of a treatment

or aftercare program.

There is a tragic lack of helpful information about substance

abuse and mental health disorders, accompanied by a widespread

stigma, prejudice, and misinformation about the disorders. Youth

and families from all walks of life need and want access to reliable;

straightforward, and current information about early warning signs

and symptoms. They want and need effective treatments; access to

services; and coping skills training. Youth who are in recovery

from co-occurring substance abuse and mental health disorders and

their families have been the best source of information and support

for others who are facing these problems. Youth and family outreach and support from peers are greatly needed and sadly lacking.

Peer-to-peer networks for youth should be developed and operated

by and for the youth themselves.

Current treatment

programs for

substance abuse

and mental health

disorders are

designed for adults.

The principles upon

which they are built

are inappropriate

for adolescents.
Federation of Families for Children’s Mental Health

37

Recommendations

Our recommendations are framed in the spirit of promoting

positive change in how treatment, services, and supports for youth

with co-occurring substance abuse and mental health disorders and

their families are designed, provided, and evaluated. The recommendations are derived from what we have learned and, we hope

they will stimulate everyone who has an interest in this subject to

reflect deeply about what can be done to improve practices and

outcomes. Change occurs only when individuals take responsibility

and begin to do things differently. Our recommendations are

directed at all those involved — providers, families, youth, and

treatment systems. In addition, we offer the Substance Abuse and

Mental Health Services Administration (SAMHSA) our suggestions for activities to fund that would begin to address the recommendations needs identified by this study.

Recommendations for Providers

Listen carefully and attentively and treat youth and families

with respect and dignity.

• Rely on them to guide you in understanding who they are,

what they can do, and what problems they are facing.

• Use what you hear to reach your decisions and make your

recommendations.

Involve youth.

• Actively engage youth in designing and evaluating programs.

• Offer youth access to information, and a voice in their

treatment decisions.

Change occurs

only when

individuals take

responsibility and

begin to do things

differently.
Keys for Networking, Inc.

38

• Create opportunities for youth to help others in treatment

and aftercare (mentoring).

• Create opportunities for youth to use their experience and

turn it into positive growth. Help them reclaim self-esteem.

Make sure families are included. Invite them into the

treatment process.

• Provide whole family treatment throughout the length of

time the youth is in residential treatment to strengthen the

bonds that are broken when children are not living at home.

• Provide or link the family to services when the youth

returns home from treatment.

• Help parents understand the treatment process and help

them learn how to notice their child’s progress as well as

signs of relapse.

• Extend treatment to parents as well as youth.

• Work with families to help them set realistic boundaries

and enforce the rules they can live with successfully.

Offer services and programs that deal with youth in an

individualized way and treat each youth as a total person.

Include the whole family in the healing process.

• Offer choices and include information about the benefits

and risks associated with treatment options.

• Promote family-child interaction as core to treatment.

• Focus on the length of time the youth needs treatment

instead of the length of time a family is able to pay for

services or their insurance is willing to cover it.

• Combine substance abuse and mental health treatment —

focus on one before the other only if the drug use is so

serious that youth cannot function.

Deliver usable and helpful information on illness, treatment,

after care, and funding to youth as well as to parents.

• Have friendly staff available to answer the families’

questions at convenient times.

• Provide easy access to information.

• Develop information specific to “what to do if/when my

child relapses” so parents, paraprofessionals, and clergy,

listen and help them without treating them as failures.
Federation of Families for Children’s Mental Health

39

• Educate youth and parents on the effects and appropriate

recommended dosage for prescription and non-prescription

drugs.

• Include fathers especially. Develop programs that inform

and support fathers.

• Educate parents about the symptoms of abuse and the

effects of drug abuse so they can provide information to

their children and recognize regression when it occurs.

Develop public awareness of mental health issues and

encourage positive models of treatment to disseminate in

schools, to families, and through youth groups.

• Develop and disseminate press releases showing positive

role models taking prescription medication for mental

health needs.

Recommendations for Family members

Get involved and stay involved.

• Listen to what your child is saying. See it from their point

of view, and try to walk a moment in their shoes.

• Address substance abuse and mental health issues with your

child at the same time. Insist that treatment programs

address both. Know the treatment program, visit the program, and visit your child. Be there, and be there often.

• Support your child in treatment and “hear” what they have

to say about all their problems.

• Praise your son or daughter for making progress and watch

for signs of regression, but remember regression is part of

recovery.

• Participate in evaluating the program as well as your child’s

treatment.

Educate, educate, educate.

• Tell other parents about mental health/substance abuse

issues and treatment.

• Offer what you know to other families who need your

support and can benefit from your experience.

• Offer your child access to information and assure that he/

she has a voice in the decisions that get made about treatment issues.
Keys for Networking, Inc.

40

• Respect your child’s and your own openness and readiness

for disclosure.

• Read everything you’re given and ask for more.

• Ask other parents who have been through this. They know.

Recommendations for Youth

Speak up and be heard.

• Speak out about getting better — what is helping you and

what you need to make progress.

• Ask your parents to be part of your treatment. Ask them to

learn about the “treatment.”

Get reliable information and share what you know.

• Educate yourself on what prompts regression. Know your

own weaknesses.

• Know whom you can ask for help.

• Ask to mentor or help other young people with problems.

They can benefit from what you have learned and what you

have accomplished.

• Offer your expertise to treatment programs and share your

observations with staff.

Recommendations for SAMHSA

Provide peer support

• Fund peer-to-peer youth outreach and network development.

• Fund family-to-family outreach and peer support activities.

Facilitate information dissemination

• Fund a multi-stakeholder process to identify information

that is critically needed by youth and families.

• Fund family-run organizations to disseminate information

in usable formats and use strategies that will get it to the

people who need it most.

Support collaboration and integrated treatment

• Fund a multi-stakeholder process to promote collaboration

between the substance abuse and mental health systems,
Federation of Families for Children’s Mental Health

41

agencies, and providers.

• Fund a multi-stakeholder process to develop and disseminate guidelines for providers to insure services for youth

with co-occurring mental health and substance abuse

disorders are fully integrated and effective.
Keys for Networking, Inc.

42

— NOTES —
Federation of Families for Children’s Mental Health

43

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

The material I have

gathered from

research and

clinical experience

dovetails perfectly

with the findings

and

recommendations

of the focus groups.
Keys for Networking, Inc.

44

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 cooccurring 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

We need to focus

treatment so that it

is integrated.
Federation of Families for Children’s Mental Health

45

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.”

 In many cases,

conditions attached

to the spending of

these funds makes

it difficult or

impossible for

treatment to be

integrated.
Keys for Networking, Inc.

46

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.

but...

“We are already

doing all we can!”
Federation of Families for Children’s Mental Health

47

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, page 57)

• During the past forty years the population of the country

has risen by 100,00,000 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 prisons - was 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 mental health

treatment system

has been radically

downsized.
Keys for Networking, Inc.

48

• 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.

Millions of

Americans develop

mental health

disorders during

childhood.
Federation of Families for Children’s Mental Health

49

How do the data from the National

Co-Morbidity Survey fit with the

experience of youth and their

families?

Blamed and Ashamed!

There are individuals who have no mental health problem and

who become involved with the use of alcohol and drugs, because

they want to change the way they feel. These single-disorder

individuals start out feeling o.k., but want to feel even better. Then

substance abuse and addiction can make them feel much worse.

But for depressed or anxious, shy, fearful, or hyperactive

children and adolescents, the motivation for drug use is very

different. They are trying to just feel normal.

Mental health symptoms can be temporarily relieved by

‘medicating’ with alcohol, marijuana, or cocaine. However, as

drug effects wear off, the post-intoxication rebound tends to

worsen the original bad feelings, causing a double motivation to

use more and more drugs and alcohol.

The Continuum of Abuse:

The earlier alcohol and other drug abuse starts, the shorter

and faster the road to abuse and dependence:

• Experimentation: Almost all drug abuse begins this way.

Young people are curious, feel invulnerable, and just want

to see what it’s like.

• Recreational alcohol and other drug abuse: If experimentation progresses, the young person will be using, with

friends, once or twice a week... or every day.

• Habitual use: With continued recreational use, vulnerable

individuals, especially those with a mental health problem,

increase the amount and frequency of use.

• Drug abuse: When alcohol and other drug abuse becomes

so frequent and important that it interferes with school,

family life, and personal development, the person has

reached this level.

• Drug dependence: If the situation grows even more serious,

the individual’s body craves the drug, and avoidance of the

But for depressed or

anxious, shy,

fearful, or

hyperactive children

and adolescents,

the motivation for

drug use is very

different. They are

trying to just feel

normal.
Keys for Networking, Inc.

50

pain of withdrawal becomes an additional motivator for

drug use. Now the central focus of the person’s life is the

acquisition and use of drugs.

Many people who are familiar with the concept of the Continuum of abuse do not know that the length of time it takes to go

from one stage to the next varies with the age of first use.

• Someone who begins experimenting in their twenties may

not become dependent until their fifties, if ever.

• Someone who begins recreational use at 16 may become

dependent by 20.

• A child, beginning to use drugs at 10 or 11, may become

dependent within just two years.

This information has been substantiated in study after study,

looking at a wide variety of drugs, from nicotine and alcohol to

cocaine. That is why, from a public health and family perspective,

we should do everything we can to delay children’s first use of any

intoxicating substance, including tobacco. (Figure 2, page 58)

Do mental health and substance abuse problems in

childhood and adolescence affect the maturation of the

individual?

We often see that the early development of anxiety, depression, thinking problems, behavior problems, when compounded by

early use of drugs and alcohol, interfere with the development of a

mature, stable, functional personality and sense of self. I have

identified several common personality immaturities that may result

from childhood and adolescent mental health/alcohol and other

drug abuse problems. Each is normal in a young child:

• Low frustration tolerance: Trouble working hard, and

sticking to it, when gratification is not immediate.

• Lying to avoid punishment.

• Hostile dependency: A dependent person, unable to do

things on their own, may have trouble developing a confident, independent self. Continued dependency may be

expressed as hostility toward the very people whose help

they need, such as parents. Hostile dependency, although

often directed against others, may really be directed against

the self. In extreme cases it can lead to a suicide attempt.

We should do

everything we can

to delay children’s

first use of any

intoxicating

substance,

including tobacco.
Federation of Families for Children’s Mental Health

51

• Limit testing: All children test limits; that is a normal part

of childhood. It is a troublesome form of immaturity when

it persists into later adolescence and adulthood.

• Alexithymia. Children and older people with this condition

are unable to verbalize their feelings effectively. As a

consequence, they may act out their feelings, just as young

children do. Rather than verbalizing anger, they may strike

out physically. Rather than talking about their fears, they

may avoid, run away, and hide. Instead of talking about

feelings of hopelessness and depression, they may act out

by attempting suicide. People with alexithymia can’t soothe

themselves or ask for help. Learning to talk about feelings

is a key step in recovery.

• Present tense only: Very young children only live in the

present. They do not have a sense of future, cannot anticipate consequences of their own behavior, and have not

become able to learn from past experiences. Adolescents

who have no clear sense of past and future can repeat the

same mistake over and over again.

• Rejection sensitivity: Young children, and many people

with co-occurring disorders are so eager to please, have

friends, and be accepted, that they may agree to do things

that they don’t really want to do. They may seek approval

by trying too hard to please. If their efforts fail, they may

feel terribly rejected, withdraw, and not try again. They can

be very thin-skinned.

• Dualistic: Young children, when they first learn the difference between right and wrong, put every action into one or

the other category: Something is either Right or Wrong. As

a consequence, moderation is a problem. A slip - having a

glass of wine at a birthday party - may be so wrong that

they might as well go ahead and get drunk. Dualism can

turn a slip into a relapse. Dualistic judgment toward a

counselor or a parent can cause condemnation; that person

is now useless and hopeless.

Adolescents who

have no clear

sense of past and

future can repeat

the same mistake

over and over

again.
Keys for Networking, Inc.

52

A model for personality development: The Maze

Everyone’s life consists of an unending sequence of conflicts

and problems (Figure 3, page 59). The individual whose development goes along a positive track learns, with the help of parents, to

climb the steps and enter the maze: It represents the struggle of

learning to resolve conflicts and problems. When the person

finally makes it out through the maze, no matter how long it takes,

there is an increase in maturity and competence. Every time you

make it through you have increased your self-esteem and effectiveness.

A troubled youth may drop into the drug intoxication evasion

loop, and out of the maze. While in the drug-evasion loop there are

many problems and conflicts, nothing gets resolved. Remember, it

is the resolution of problems and conflicts that leads to maturity.

The interactivity between mental health

problems and substance abuse problems:

One reason that we cannot treat these problems separately is

that they are interactive within the individual. The brain of a person

with a mental health problem may be exquisitely sensitive to being

disorganized by even tiny amounts of alcohol, marijuana, cocaine,

or amphetamines. For all practical purposes, such individuals are

‘allergic’ to drugs, in the sense that a little goes a very long way.

What happens to the social life of the person

with co-occurring disorders?

As can be seen from the sociogram (Figure 4, page 60), a

person’s relationships with others vary in type and intensity:

• At the fifth level of our social network we have acquaintances. They sell us a cup of coffee in the morning, or cash our

paycheck at the bank.

• At the fourth level we have casual friends. We do not keep

in touch with them on a regular basis, but are glad to see

them when we cross paths.

• At level three are our good friends. We stay in touch, and

they care about us.

• The second circle contains those few friends who are our

most trusted intimates. These are the individuals who we

One reason that we

cannot treat these

problems

separately is that

they are interactive

within the

individual.
Federation of Families for Children’s Mental Health

53

know will never intentionally hurt us, and can be counted

on to go out of their way to help us if we are in trouble.

You are rich if there are three people, other than family

members, in your second circle.

• The inner circle shows the private zone. It is shared with no

one. The shaded portion refers to the part that is repressed

and is not even accessible to the person, while the unshaded

portion refers to the part that is suppressed, remembered,

but secret; not shared with anyone else.

When someone with co-occurring disorders first comes into

treatment, often there is no one in their second circle and few if

any in their third circle. Their social network may be nearly empty

until we get to the fourth level; casual friends.

The person with mental health and alcohol and other drug

abuse problems may experience their drug of choice as their best

friend; it seems to fill the emptiness in their heart. Beginning drug

abuse treatment, which requires or involves abstinence, may lead to

feeling much worse. The ‘best friend’ is gone, and the emptiness

within is devastating. For this reason, substance abuse programs

must address loneliness, sadness, the sense of loss, and the depression that often accompany early recovery. Otherwise, the person

may be motivated to leave treatment and rush back to drug or

alcohol use, because they cannot bear their depression and loneliness.

Who says that treatment for co-occurring

disorders must be integrated?

In 1999 the National Institute of Drug Abuse produced a

slender but powerful booklet: Principles of Drug Addiction Treatment. We do not have space here to list the 13 principles enumerated by NIDA, arising from their vast database of research studies

on substance abuse treatment. But item 8 states: “Addicted or

drug abusing individuals with co-existing mental disorders should

have both disorders treated in an integrated way.”

Item 13 of the booklet is equally important: “Recovery from

drug addiction can be a long-term process and frequently requires

multiple episodes of treatment.”

“Addicted or drug

abusing individuals

with co-existing

mental disorders

should have both

disorders treated in

an integrated way.”
Keys for Networking, Inc.

54

How often is treatment for co-occurring

disorders integrated in actual practice?

Unfortunately, the answer is: rarely. Many young people find

themselves trapped in a situation in which there is not even integration between mental health inpatient and outpatient treatment. And,

after residential substance abuse treatment they may find that their

outpatient program is not integrated with the residential program.

Worst of all, it is most difficult to find fully integrated treatment, in

which one team deals with all the client’s treatment and support

needs, and includes the family in the process.

There are three distinct approaches to treating individuals

with co-occurring disorders.

• Sequential treatment: This is the traditional approach, in

which the person is first treated in a mental health or

substance abuse agency, and then, presumably after effective treatment has been accomplished, the individual is

referred to the other kind of agency. In fact, this doesn’t

work. This failed form of treatment, for reasons of tradition, history, and separate funding streams, continues to be

common throughout the country.

• Parallel treatment treats the person with co-occurring

disorders at the same time in two different agencies. If the

two agencies attempt to communicate with each other, the

treatment is then referred to as collaborative.

• Integrated treatment provides treatment for the mental

health and alcohol and other drug abuse problems in one

place. The treatment team consists of individuals from

varied clinical backgrounds who have been cross-trained to

work together. The team develops a long-term treatment

plan, in which the goals and different modalities of treatment are sequenced: Everything cannot be done at once.

There is considerable controversy among funding, licensing,

and treating agencies as to whether or not integrated treatment is

really necessary for all but a few people. Agencies prefer parallel

or collaborative treatment, because it requires less change. The

Blamed and Ashamed report makes it clear that adolescents and

their families prefer/demand integrated treatment. Thus, we have a

conflict between the treating agencies and those they serve.

Five distinct

problems have

been noted with

parallel/

collaborative

treatment

approaches
Federation of Families for Children’s Mental Health

55

Five distinct problems have been noted with parallel/collaborative treatment approaches:

• The young person and their family is caught between the

different treatment philosophies and values of the mental

health and substance abuse agency.

• It is difficult if not impossible to coordinate two different

treatment and recovery plans.

• Treatment is more expensive because of duplicated services.

• Parallel and collaborative treatment fragments the person,

and is not holistic.

• Dealing with the interactivity of the disorders is virtually

impossible when different treatment teams are working

with one individual, even if the treaters make a sincere

effort to keep in touch with each other.

The tragedy of the current approach:

Shifting young people with co-occurring

disorders into the criminal justice system.

Everyone has to be someplace. When, in today’s society, the

public mental hospitals have virtually been shut down, when there

is no where else for the person with co-occurring disorders to be,

the final ‘three hots and a cot’ are provided by our society in jail.

The best approach to solving the problem of locking up young

people with co-occurring disorders in jails and prisons would be

Prevention, early intervention, and integrated treatment:

• Offering early treatment for children with mental health

problems.

• Offering integrated treatment to adolescents with cooccurring problems.

But we are nowhere near that point today. As a stopgap

measure, we should be working now to divert young people, before

they get to jail. We have three chances. Diversion can be done at:

• Arrest

• Arraignment

• Sentencing

The best approach

to solving the

problem of

locking up young

people with cooccurring disorders

in jails and prisons

would be

prevention, early

intervention, and

integrated

treatment.
Keys for Networking, Inc.

56

If diversion-to-treatment has not succeeded in time, and the

client ends up in jail, we must insist on

• Treatment during incarceration.

But treatment during incarceration is not enough. Relapse

rates are very high if, after treatment in jail has taken place, the

individual is released to the street without adequate supervision,

support, housing, educational opportunities, and vocational opportunities.

What must be done? A goal for all of us to

share:

Our wonderful community, the United States of America,

must re-invent itself and its systems of services for every citizen,

from the infant to the elderly. We must offer support and treatment

to every individual, affording that person the opportunity to succeed to the full extent of her or his efforts and abilities. We must

provide preventive, supportive, educational treatment and rehabilitative services. We must also support overburdened families, so

that the wonders of our technology, our wealth, and our concern for

each other benefit all of us.
Federation of Families for Children’s Mental Health

57

Figure 1

TRANS-INSTITUTIONALIZATION

in the USA

1955

550,000

2001

60,000

State Psychiatric

Hospital Beds

1972

200,000

2001

2,000,000+

Prison & Jail

SQUEEZING THE BALLOON

Where Is Treatment?

The Information Exchange, Inc.

G-24
Keys for Networking, Inc.

58

Figure 2

Continuum of Abuse

experimentation

recreational use

habitual use

abuse *

dependence

+ Dose + Frequency

The Information Exchange, Inc. ©1994

G-64
Federation of Families for Children’s Mental Health

59

Figure 3

MODEL FOR PERSONALITY

DEVELOPMENT

CONFLICT

OR

PROBLEM

drug intoxication

MORE MATURE

COMPETENT

PERSONALITY

EVASION LOOP

“It is the RESOLUTION

of problems and conflicts

that leads to maturation

of personality.”

THE FORCE

OF GRAVITY
Keys for Networking, Inc.

60

Figure 4

A Sociogram:

Intensities of Relationships

6. Strangers

5. Acquaintances

4. Casual friends

3. Good friends

2. Circle of intimacy: trusted intimates

1. Private self

The Information Exchange, Inc. ©1994

G-120

1 2 3 4 5 6
Phone: 703-684-7710

Fax: 703-836-1040

Email: ffcmh@ffcmh.org

Website: www.ffcmh.org

Federation of Families for

Children’s Mental Health

1101 King Street, Suite 420

Alexandria, Virginia 22314