A collection of parents and caregivers started a series of events in the late 80’s that would, ultimately, lead to the formation of an unheard-of type of movement, one that would uplift the field of mental health to a whole new level. The family movement started with a group of parents dissatisfied over the treatment of their children within many of the child serving systems. For example, only half of their children were in school, and of the half who were not, 75% were in the juvenile justice system. Some parents were forced to give up custody of their children in order to receive services. In 1982, Jane Knitzer, a renowned researched, defined the problem in an issue brief. “Unclaimed Children” turned the spotlight on a group of children and youth with the most serious disorders who were largely ignored and underserved by the mental health system. Her detailed descriptions were so engaging they set the stage for public conversations on these important issues to improve services for families living with mental health problems and psychosocial disabilities, especially in low and middle-income areas where effective services were often scarce.
In 1986, Portland State University Research and Training Center on Family Support sponsored the first Families as Allies conference. Bringing together a diverse group of individuals looking to network with each other, this landmark meeting became a catalyst for the family movement. A common connection that bonded them together: all families were going through the same experiences when it came to finding a voice for their children with mental health challenges.
This realization led to families networking together at every opportunity they were given as they quickly noticed that a collective voice was stronger than a single one, a collective voice that shared enlightening and thought provoking stories around children who suffered from mental health challenges. Currently, important steps have been made in incorporating family voice at treatment tables and some policy tables; however, funding for family advocacy is still uneven across states.
If the movement is to stay relevant, family members must be treated as equal partners of the team and seen as experts on their children. Family Leaders must offer peer support to new families in order to break down the stigma of families being labeled as the problem and not part of the solution. The Family Movement is at a critical crossroad in its evolution. To thrive in the future we must figure out how to pass the lessons learned down to the next generation by developing succession plans for the current leaders while nurturing the next generation of leaders to carry the torch. Reaching out and embracing our millennial parents using modern technology and having families leading the movement is the smartest investment strategy for society and an urgent strategy for the children and families who are coping daily with mental health challenges.
In the future, family organizations relationship strategies from years ago may not be effective as policy makers’ focus on reducing costs. Organizations must be able to demonstrate how they are keeping children in their homes and in their communities. Family organizations must begin to bill Medicaid to support their work going forward. Parent stories, when combined with data, can be a powerful tool in making change.
Family organizations need to go back to the basics of helping each other through advocacy and support. A balance must be found between grass root advocacies and making sure family voice is present at local, state and national policy tables. Other strategies should include a way to nurture the field and support the people who are doing the work. Our strength lies in the fact that family organizations represent their communities.
For questions, please contact:
Trainer and Family Content Specialist
Georgetown University National Technical Assistance Center for
Children’s Mental Health
National Federation of Families for Children’s Mental Health