xxAACP Newsletter, Volume 14, Number 4, Fall 2000
Surgeon General’s Conference: Family and Youth Voice on Children’s Mental Health
On September 18 and 19 the Surgeon General’s office called together 300 individuals to a meeting in Washington DC for the purpose of defining possible ways to implement recommendations made in the Surgeon General’s Report on Mental Health, Chapter III: Children and Mental Health. His focus was to develop plans for prevention and early intervention, to support healthy emotional development in children and to bring evidence based treatment methods to full implementation in the real world of public mental health services. The Surgeon General’s Office drew heavily from NIMH and CMHS officials for suggestions on who to invite. CMHS staff recommended a strong advocacy and consumer presence and the Surgeon General’s Office, indeed, invited many family members and 10 youth. These were drawn from existing SAMSHA Children’s Mental Health Initiative grant programs. The grant I have been associated with in King County has been recognized as having one of the nations most active youth committees associated with a grant. For this we were invited to bring three youth. Representing King County’s program were Minal Kode, Kimberly Walker, ages 19 and 20 and long associated with a King County community development program Youth ‘N’ Action, and Janaea Bellows a 20 year old young woman who, as a homeless teen, founded an advocacy program for street youth in Seattle, Peace on the Streets by Kids From the Streets. They were accompanied to the conference by myself, through my role as medical director for King County’s mental health programs for children and youth, and Stephanie Lane, a social work intern who is helping me organize our youth committee.
The youth from King County met the other youth and family members at a reception on Sunday, September 17 and immediately forged working relationships and strategies on how to best present a youth voice at the conference. The conference began with presentations by scientists on what is known about the epidemiology of mental illness and risk factors in children and adolescents and a recitation of what is known regarding the efficacy of treatments for children and youth with various diagnoses. I had discussed with Stephany, Minal, Kimberly and Janaea my perspectives on the failings of our diagnostic system for young people and my difficulties with the methodology and interpretation of much of the research on treatment. They were encouraged to listen and learn during these initial presentations then actively participate later that day in breakout sessions, chaired by prominent members of the academic and scientific community. They, along with a few family members, joined an array of bright, forceful representatives from community and academic institutions; psychiatrists, psychologists, educators, pediatricians and many others from other facets of the system of care for youth. Most of those attending the conference had not had experience with family or youth participation such as we in the grant communities are beginning to take for granted. Needless to say, in such a setting neither the youth nor family members had a clear sense of how to be heard, nor did the facilitators have a sense of how to include advocates and consumers in the deliberations. The questions to be addressed were often based on presumptions that those outside of the research world did not readily embrace. In the tension inherent in such a situation some youth and family members were very frustrated and had difficulty in participating. Others found ways to add their voice. The three youth from King County clearly displayed great skill and maturity in how they faced this task. Each asserted themselves forcefully and dealt strategically with the process of the sessions. Others also had success. Some walked out in frustration. On Monday evening the youth and family members caucused, reviewed their experiences and decided not to attend the breakout sessions the next morning. Instead they continued to meet as a group and drafted a statement which touched on the salient questions of access and treatment efficacy, but from the perspective of advocates and consumers. The non-attendance of the youth in the breakout sessions on Tuesday was noticed and captured the concerned attention of the other attendees. In the feedback session on Tuesday afternoon, after summaries from the other sessions, it was arranged for the youth position paper to be presented to the entire conference. A sixteen year old Native American young woman from Fairbanks Alaska, who had walked out of her breakout session the day before, read the statement. Her voice was clear and forceful yet respectful in tone. She noted the presence of mental illness in many children and adolescents and their difficulties in gaining access to timely, meaningful and culturally competent care. She demanded for all youth that they be offered effective care and that it be delivered in a respectful manner. She told the meeting of our insistence that each youth and their families be full participants in treatment planning and evaluation of their care. The power of the statement and how it was presented was electric. There was total silence in the room and loud applause after she was finished. Those who had participated in drafting this statement were asked to rise and were acknowledged by the meeting participants. The youth had been heard and their voice was clear to the Surgeon General. The three youth from King County left with a sense of having had a meaningful participation in this important conference.
The experience at this conference with my three young colleagues and an older social work graduate student was one of the most meaningful of my career as a community oriented Child and Adolescent psychiatrist. My participation in our grant activities over the past several years prepared me well for the dialogue I was to have with other attendees including youth and family members. My grant oriented job activities in King County include developing policy on serving youth in transition to adulthood and in organizing a youth presence for our grant. We intend to have youth attending all our planning meetings and leave a legacy of youth participation in policy much as we are making family participation an existing fact in program and policy development in all service elements of our system. Participating in the rise of an active chapter of the Federation of Families in King County has been my obsession and my joy for the past four years. The Federation families are providing training for our wraparound process for consumer families and staff from our service organizations, they provide direct support and advocacy to families, and they have allied with an epidemiologist at the University of Washington to develop a nationally recognized program evaluation. Our grant helps to support the Blended Funding Project, a joint effort of our regional social service administration, our county mental health authority and our regional Educational Service District. We have taken our wraparound methods from Blended Funding to a grant sponsored activity addressing the needs of families seeking assistance from the courts in addressing the out of control behavior of their young people. We hope to have youth actively participating with family advocates in both of these programs soon.
At the Surgeon General’s conference it was clear that there is a painful and difficult dialogue beginning between those of us who build programs in communities and those who do methodologically meticulous research in universities. I sat next to Scott Henggeler in our breakout sessions and noted his great success in demonstrating efficacy with Multisystemic Therapy when treatment is held to close adherence to the treatment manual. His programs have dodged many of the difficulties that diagnostic based research have suffered and his methods closely approximate the CMHS grant programs in promoting family centered and highly child focused care. But he disparages those of us who operate with less clear clinical goals and include broad, difficult to control contextual considerations. We pride ourselves for dealing with the real world as it impacts our youth and their families. This tension was the heart of the issue being discussed at the surgeon generals conference. It was embodied in my dialogue with Dr. Henggeler and it was demonstrated numerous times between community focused practitioners, family members and youth and research scientists. Clearly the voice of families and youth supports the development of efficacious treatment, but it demands practical relevance, wide applicability, and youth and family participation in defining goals and objectives. My experience with three youth participating in the Surgeon General’s conference on Children’s Mental Health offered a poignant and powerful opportunity to observe and participate in this important dialogue.
Immediate Past President, AACP
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