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134 APRIL 2010
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Life stories: we’re all in this together

Barbara Huff and Elaine Slaton

Our stories are as different as possible – as different as we are, as different as our children are – but it is the intersection between our stories that brings us together as advocates for families of children with emotional and behavioral disorders. We are parents of such children ourselves, and we encountered the mental health system before our brand of advocacy existed. What we found – a lack of available information, a lack of support for families devastated by their children's problems – was discouraging and often painful. Professionals, when we finally located them, were quick to label our families as dysfunctional. Few of them seemed able to recognize us as more than “part of the problem” – though those who did, those who consulted us about our children's needs, who treated us with respect instead of condemning us as the cause of our children's difficulties, were beacons of hope in an otherwise dark world.

What if all professionals were like those few? What if families of children with mental health needs were recognized as having what some call a competency base of expertise (gained through the experiences of raising a child with mental health issues) and therefore were considered valuable partners in planning, implementing, and evaluating mental health services and supports? In our work with the Federation of Families for Children's Mental Health this is what we are trying to do. In fact we train families to deal effectively with the system, and we model the practice we wish to see everywhere. Families are actively involved in every aspect of their own training, shaping the Federation of Families for Children's Mental Health to suit their needs. In an ideal world, families' interactions with mental-health and education professionals would be like that too – families would be shaping the system to suit their needs.

A familiar story
Our stories, as we said, are different. One involved a daughter, the other a son. One involved an eating disorder of life-threatening severity and a learning disability, and the other involved an obsessive-compulsive disorder with multiple manifestations. But where our stories are the same – the difficulty in finding information and help; the devastating effects on the family; the financial strain; and the stigmatization (mental health professionals, because of their training, tended to blame us for our children's problems) – they also resemble the stories of countless other parents of troubled children. Katherine Wagner’s and William Evans’s stories, which appear in this issue, may seem in some of these details familiar – not only to us, but to those of you working with families, and those of you who may have faced similar difficulties within your own families.

Our hope is that when families are brought to the table and treated with respect, the larger story – the story of all families with children with mental health problems – may begin to change. We say begin to change because, after nearly 10 years of working toward this goal, we understand that change is slow. It might seem that once the observation has been made that families know more about their children than outsiders do, the rest would be simple. Involve families in their children's treatment, consult them about their children's needs and their own needs, and success is guaranteed.

But the reality is that this work is ongoing. The message must be repeated, and in as many ways as possible. As the articles in this issue make clear, much progress has been made toward greater involvement of families in these matters. The example of the collaboration between the Colorado Federation of Families for Children's Mental Health and Denver’s juvenile justice system, in the article by Jennifer Mankey, Carolyn Nava, and Marilyn Webb, illustrates how powerful this alliance can be. Families in Denver have actually changed the way the courts do business. And CeCelia Nation, a teenager who collaborated with a youth advocate and several other young people, created a statement about the mental health needs of youth that was powerful enough to reach Congress. Elsewhere in this issue David Osher and Sandra Keenan detail the effective inclusion of families in a Rhode Island school district. Katherine Wagner describes the largely successful efforts of New Jersey parents to establish a unified system of care for youths with mental health needs in their state.

Different as the successes may be, there are similarities between these stories too, as there are between our disparate personal stories: in each success story there is also the story of failed attempts, of the difficulty of overcoming established practice. In their article, Osher and Keenan summarize a history of shame-and-blame policies stretching back into the 19th century. We keep encountering new mental health professionals who need to be shown the importance of collaboration. We may influence one group of mental health providers, but a new group is always appearing on the horizon. And then there are the agencies, legislators, and others who need to be reached. Our work has barely begun.

The greatest obstacle
Barbara’s recent experiences with the medical profession have reminded her sharply of the stigma still attached to mental health issues. As the mother of a daughter with a serious physical illness she has been included in every aspect of her daughter’s treatment, has been listened to, has had her wishes, and those of her daughter, respected, and has felt like a valued member of the team dedicated to her daughter’s treatment. It is hard for her not to remember the painfully dissimilar experiences she had years ago as the mother of a child with anorexia, in the days when parents – and mothers specifically – were still seen as the absolute and only cause of the disorder.

No wonder, then, that some parents resist having their children labeled as in need of mental health services, preferring even, as Mankey, Nava, and Webb point out, to have their children categorized as juvenile delinquents. The stigma of mental health issues persists, affecting the way professionals look at youth and families. Families continue to feel judged. And the shame-and-blame approaches of the 19th century persist along with the stigma.

What would help
What would help is more of what we, and many others across the country, are doing already: involving families in their children's care; planning, implementing, and evaluating child serving agencies; and improving the systems our children encounter – making collaboration the rule. But we have found, in researching our monograph (Learning from Colleagues: Family/Professional Partnerships Moving Forward Together), that more obstacles may lie ahead. Parents and other family members still feel that the partnership with professionals can never be an equal one, for the simple reason that professionals hold the power within systems and agencies. And professionals also have misgivings. Their careers and reputations are on the line. What if a decision made in collaboration with a family turns out badly – where does accountability lie? There is no answer yet. The work to find a balanced and safe way to partner continues.

Still, our research and our experience continue to be encouraging, and continue to point to collaboration as the best path. The people currently doing the best and most successful work with children with mental health issues are the ones who have put families in the lead, giving them input into how they receive necessary services and support and also letting them influence overall systems change. As some of the other articles in this issue demonstrate, collaborating with families is also important in the classroom. Jane Pemberton, Joyce Rademacher, and Kathy Shelton discuss ways teachers can make the most of parent strengths and knowledge by inviting collaboration through technologies such as e-mail. Donna McCrary, Mary Bailey Estes, Tracy Teaff, and Mary Helen Thompson explore the challenges homeless schoolchildren and their families face and provide strategies for ensuring that such children have access to education. And Yolanda Martinez and Ann Cranston-Gingras, reporting on their study of migrant farmworker families, find, just as the Denver youth advocates found, that cultural differences can lead professionals to misunderstand families and their apparent involvement with their children. Again, the lesson is: listen to the families.

The rest of the story
Our own children are now adults. They live productive lives, lives that we could almost not have dared hope for them when we were in the midst of our crises. Our work in the Federation of Families for Children's Mental Health is aimed at helping other families reach toward similarly positive outcomes. We remember how devastating our own experiences were and then we wonder how families less fortunate than ours, families without the middle-class privileges, the houses and cars, the credit cards, the fluency in the mainstream language, can possibly weather such troubles. In our own work we aim to help families of all kinds, with needs of all kinds. We understand that a wide range of therapeutic, educational, and social services will be essential to addressing these needs, and that in most states and communities these services are not available. For many families, choices are severely limited.

But families, when asked to contribute to the conversation, can expand these options. We have seen it happen. Families, after all, are the experts on their children's needs. And they have, as we like to say, Ph.D.s in Perseverance. We encourage them to make themselves heard, and we encourage professionals to listen to what families are saying. As so many of the articles in this issue demonstrate, when professionals are open and families are given a chance to participate in decision-making, positive change is inevitable.

This feature: Huff, B. and Slaton, E. (2001). Editorial: Life stories: we’re all in this together. Reaching Today’s Youth, 5, 3. pp.2-4.

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