Blamed and Ashamed: The Treatment Experiences of Youth With Co-occurring Substance Abuse and Mental Health Disorders and Their Families

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 they needed 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 that 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, whom 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 after youth and families themselves choose to change their behavior and engage in treatment activities or access programs and services that meet their needs.

Co-occurring substance abuse and mental health disorders are inseparable problems and cannot be effectively addressed in isolation from each 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 particular 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. While 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 his/her recovery during aftercare.

Youth oten 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 disorders, 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 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.

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