The author, a parent, explains how she came to be part of an organizing force to improve children's mental health services in New Jersey “though too late to help her own child.
Meghan is not her real name, but rather the name she lets me use to tell her story, or at least the part of the story I know as her mother. She was 13 years old when it all began. I started to get notes and increasingly urgent phone calls from school. They wanted me to come and get her, or they wanted me not to pick her up after school because she had detention. Often they wanted me to see the principal, the vice principal, or the guidance counselor.
Meghan's problems snowballed. A day playing hooky and going to the mall resulted in three after-school detentions. A day absent from those detentions turned into a week of detentions, and so on. While serving detention, Meghan met a new group of friends and found popularity with them. She also found new ways of getting into trouble. Once, when she was on home suspension, she managed to slip back into school and was charged by the police with trespassing.
The officials wanted us to be tougher, but when we tried that, Meghan ran away and hid at the home of a friend. The months passed, and things did not improve. One night the police called at 3 o'clock in the morning. They had picked up our daughter; she had been wandering the streets. When we got to the station Meghan was in such a rage that the police called in a special counselor to try to make peace between us. The truce worked well enough so that we could at least take her home.
Once home, though, we were back to walking on eggshells, trying to avoid episodes of anger. Eventually the school was able to get Meghan classified as being in need of extra support, but by that time it seemed that her troubles had grown beyond simple measures. As one advisor pointed out, after-school hours and weekends were even more difficult for us than actual school hours. Suddenly, frighteningly, we seemed to be talking about residential placement.
We looked into this unappealing option and found that the possibilities offered and partially paid for by the public system were dismal, and that it could take months to find a “bed.” Did we really want such a bed? Available resources, which all seemed to involve getting Meghan away from our family, seemed completely undesirable. But what were our options?
As we pondered, Meghan seemed to be disintegrating before our eyes.
The next time she turned up at the police station, we insisted that she be taken to a hospital for assessment. After this there was a hospital stay (to deal with the running away and drinking), private boarding school number one, the hospital again (to deal with a suicide “gesture” concerning the issue of boarding school), another private boarding school, three months as a runaway, and finally the Perez family - Meghan's self-selcted foster family.
Meghan was 15 when she left to join the Perez family. For most of the next three years she lived away from home, and I did a lot of thinking. We had private insurance, and we could pay for therapy and boarding school. We were “advantaged,” yet child therapy, family therapy, and public and private mental health systems had all failed us. We had lost our daughter.
Thinking Beyond the Specific
What had gone wrong? I felt driven to address the problem the larger problem, because it was clear that the issues went way beyond the problems of a single child. I had learned a lot through my personal experiences:
Services are not family-friendly “parents are too often considered the root of the problem and not the key to the solution.
Services are hard to find, learn about, and access. They are fragmented, usually funded separately, with varying eligibility criteria and uneven quality standards. And the very service your family needs might not exist at all.
In other words, no one has been designing or steering the overall process, least of all the families themselves. At the same time, parental strategies to gain some control and make choices for their children are often opposed and judged. Parents who seek change are frequently labeled as “angry,” “enmeshed,” or “controlling.”
My drive to address the larger problems of children's mental health services led me to the New Jersey Parents' Caucus, a loosely organized statewide group of volunteers that advocated for policy changes in children's mental health services.
The Parents' Caucus
For more than 10 years, the New Jersey Parents' Caucus has worked persistently to draw attention to the fragmentation and inefficiency of New Jersey's services for children with mental health needs. From the beginning, we were continually strategizing about how to appear bigger and louder than we really were. At first we had a core group of three or four members-people who volunteered to sit on planning councils at all levels and talk to parents who called for help. We linked up in some way with everyone we met and talked to anyone who could offer insights and connections. We included sympathetic service providers and state employees in our circle because we always thought we needed every possible perspective. This addition of professionals distinguished us from many other parent groups that stayed separate from nonparents by choice or by default.
After convening a series of small focus groups with parents, we distilled the resulting observations, dreams, and complaints into 10 points, which we called the Children and Family Initiative. We took the document into every advisory and planning committee meeting any of us attended, and to various other groups, such as the state League of Women Voters and the Junior League, and convinced them to sign on. We took it to the boards of county freeholders in the counties where we had any access or connections and obtained written endorsements from them as well. We even made a 15-minute explanatory videotape, Mikey Falls Through the Cracks. We wrote the script ourselves and used the donated services of a small-film producer and the directing services of the Mental Health Players, part of the state Mental Health Association. More than anything, we used the film to provoke discussion. We have shown the video to parents, planning groups, and graduate students studying to become social workers. The film confirms the experiences of parents and sensitizes future professionals to the situation parents face.
Something can surely be done
Trying to look more impressive than just a few cranky parents, the Parents' Caucus initiated a Children's Initiative Workgroup, allying ourselves with three other organizations: the Mental Health Association in New Jersey, the child-advocacy group Association for Children in New Jersey, and the state parent training organization for special education called the Statewide Parent Advocacy Network. This partnering was important because, although our ideas and mission were clear and passionate, we were small and (we thought) unimpressive all by ourselves. Larger organizations benefit from these partnerships because they remain connected at the grassroots level with the real people experiencing the issues.
Ultimately we even went into the governor's office and briefed the Deputy of Policy and Planning on our work. “This is fine,” he told us, “but it's just philosophy; it's like mom and apple pie “who'd be against it?” He had a suggestion for us. He said, “I work best with action steps. Instead of 10 philosophical points, show me 10 action points that I can keep on my desk and work on when I can.” Galvanized by his suggestion, we worked through one of our various task groups to create a set of action points (see box on this page).
We started by sending the 10-point action report to the Commissioner of Human Services. Though we received little direct feedback, we noticed encouraging developments. We noted, for example, that then-Governor Christy Whitman spoke at a conference on families and made mention of her special concern for children and young people with special mental health needs. She also directed the Department of Human Services to address the problem.
New Jersey then developed a system-wide reform of children's mental health care-the “Children's System of Care Initiative–-which was to be unveiled at a federally funded conference called the Policy Academy, to which I was invited. Each state that was invited to attend the conference was developing its own specific human services policy initiative. New Jersey's Initiative was based on the Parents' Caucus Initiative crafted by the parent volunteers.
The efforts of the Parents' Caucus continued. In just a few months we became a nonprofit organization. We assembled a board of trustees, hired an executive director, found office space, and negotiated a contract with the state. A year after the Policy Academy, we are reaching out to parents and have organized nonprofit Parent Support Organizations (PSOs) in the first three counties named in the Children's Initiative.
Looking to the future
When the Children's Initiative was first made public a year ago, I attended the press conference and was surprised to find that the reporters seemed to be asking the same question: Will this initiative mean no more shocking news stories? They were alluding particularly to young Sam Manzie, now serving a life sentence for raping and killing a younger neighborhood child after a judge had sent him home from a trial for another offense, letting him off with a lecture. This after his parents, supported by his therapists, had pleaded for intensive treatment.
No more shocking news stories? Of course we would like to be instrumental in stopping these high-profile crimes. But we are also concerned about broader costs to society when too many children are failing to realize their potential, are unable to make their expected lifetime contributions in terms of work, family, and citizenship. We estimate that 8% of all children have serious needs for mental health services. According to the Surgeon General, only 5% of those get the services they need (Department of Health and Human Services, 2001). Yet more than ever before, the disorders that afflict such children are treatable. They need a system of care that assures the suitability of clinical services and makes every effort to ensure for children and their families a maximum normalization of all aspects of life. Parents and families affected by the Children's Initiative will:
Know whom to call
Get the information they need
Have real partners - for the first time in most cases - in their case managers and service providers
Be teamed with another parent who has personally been there and done that: taken a child to the emergency room or picked one up at the police station at 3 in the morning; repaired holes in walls; slept in 'a sleeping bag across the threshold of the child's bedroom; comforted anguished siblings; struggled with the stigma, unmanageable stress, marital breakdown; coped with isolation-from neighbors, judgmental school personnel, and even their own extended families.
One parent who is registered in the new system says she can't get the smile off her face, and it is certainly not because her son is suddenly well. It is because she no longer feels alone: and she is now treated like a key to the solution.
Clouds on the Horizon
There are, however, larger uncertainties when dealing with change on a statewide level. The Children's Initiative has been a “governor's” initiative. It exists by executive order, not through legislation, and that is both good and bad. It is good because it has been relatively quick and uncompromised in its vision, which is essentially the vision expressed by parents over the years. It is bad because, in this case, that particular governor is now gone. A driving force behind the Initiative, the Commissioner of the Department of Human Services, has now resigned as well, and as I write this, has not been replaced. Also hanging in the air are some unresolved labor-union issues that affect the Children's Initiative.
The new acting governor has had a good track record in the legislature on the support of families, but he has put our Initiative on hold, pending “further study.” Luckily the parents have friends, and we are going public with parents' stories to stress the need to continue development of a program that is fully designed and fully funded. The money is already in the budget, although federal participation in the funding will depend on going statewide. If the program does not advance, it will in effect disappear.
The children and family initiative
What might have been: Can it become policy?
When I was at the Policy Academy, someone asked me what would actually have worked for our family during Meghan's early years. I couldn't answer that right away, because what worked finally for us-letting go and letting life and maturation do the work-was something I could not ever bring myself to recommend to another parent. Only very recently have I felt I could answer.
When our daughter returned to live with us again at age 19, things were different. It certainly was not always smooth sailing, but she now intended to stay and make things work. She got her GED and driver's license and worked at many different jobs. She found a therapist she liked and stayed with her for several years. She moved to an apartment with friends, and ultimately to her own place. She has found work she loves.
Would she have been helped if our organization had already been in existence during her troubled period? Absolutely. System of Care reforms as they exist across the country have as an intrinsic value what is called “strengths-based” planning.
This involves not just looking at a child's obvious gifts and interests, but also actually reframing many of the qualities that have appeared to be the problem. Instead of seeing “hyperactivity,” for example, System of Care advocates will see unflagging energy. Instead of being “manipulating,” a young person may be considered to have a gift for persuasiveness. Young people once labeled “oppositional” may instead be thought to exhibit determination to figure things out by themselves.
Today I see some of the very qualities that used to get Meghan into trouble constructively refocused in her successful life. This refocusing, I now believe, is the only thing that might have made it possible for her to recover and thrive entirely at home. Schools rank students by IQs and SATs, class standings, and other scores. This is a narrow definition of human potential that easily shortchanges young people whose talents may not be so easily quantified. Likewise, some mental health professionals look at youth with emotional and behavioral problems and see mostly pathology. In a typical, thick case file, not many words will be positive. Children are judged and categorized based on these negative traits.
The New Jersey Parents' Caucus has the following vision statement: We celebrate the potential of ALL children to become loving, responsible, and contributing adults. Let us begin to look for that potential; let us live with the result of that vision.
Since January 2001, Katherine Wagner has served as community service coordinator of the New Jersey Parents' Caucus, Inc., a statewide parent group. Previously she was an advertising writer; special education art teacher, and for over a decade a volunteer advocate committed to change in the children's mental health system.
She and her husband raised two daughters with special education and emotional / behavioral needs; both are doing well today.
Department of Health and Human Services. (2001). Report of the Surgeon Generals Conference on Children's Mental Health: A National Action Agenda (On-line) Available: http://www.surgeongeneral.gov/cmh/childreport.htm
This feature: Katherine Wagner, K. (2001) The Children's System of Care Initiative. Reaching Today’s Youth. Vol. 5 No.3 ,pp 31-34