The New Jersey State Regional Family Support Planning Councils were a force in the DD system during the 1990’s and early into the 2000’s. The activities of the nine regional councils ranged from active and engaged, to militant and scattered, to rebuilding and dormant. But the overall effect was one of local councils made up of families of individuals with developmental disabilities using their voices to try to steer public policies so that they better fit the needs of those individuals and others like them, and their families.
In those days it was easier to stay focused because the guidelines for involving families in policy and funding decisions were evolving and needed to be directed. Much of their work was concerned with providing information to the families in their respective areas, recruiting people to get involved, drafting advisory recommendations and, for some, watchdogging the state to ensure the philosophy behind the Family Support Law was being adhered to.
That philosophy is simple. Since families are the primary caretakers of their children, when they are children, and the caretakers in many instances or primary advocates throughout their shared adult years, they are uniquely qualified experts in their own family situation.
Once the councils became fully established and the yearly recommendations to the State Division of Developmental Disabilities about funding priorities and policy directions became more routine the mission seemed to fragment. Although the councils still informed families in their areas and submitted their annual reports, there was a letdown. The kind of letdown that comes with a degree of success.
The councils were in the process of reassessing the urgent issues of the day, which were shifting from respite and resources for those caring for family members at home to the crumbling infrastructure of the community system and the ongoing funding fluctuations at the state and federal levels. The lack of health care providers and the struggle to attract and keep community support workers were reaching crises out in the community. Individuals and parents continued to get older and many families who had been the primary caretakers could no longer do that.
The councils had been in the process of discussing these issues when the proposal to move the responsibility for children with developmental disabilities to the Department of Children and Families (DCF). That was January 2013. Since then Family Support has been scrambling to figure out the differences in the new system and get a seat at the table there.
DCF works very differently from DDD. The department is based on a model of crisis intervention, while DDD has always provided long term services to those who need them—most often throughout their lives.
These differences are significant but in no way insurmountable. In fact, merging the two mindsets in these cases might benefit both agencies. Children and adults with developmental disabilities certainly have short term crises and children and their families in crisis can have long term needs. Family Support Councils could bring a lot of experiential expertise to these planning discussions.
I made the point in a previous post that it could truly benefit the new efforts at DCF to promote a cultivation of Family Support-based advocacy. I’ll say it again.
Sure, a group of parents, all with their own agendas and varying degrees of experience and knowledge, is a messy structure. But it introduces a frontline perspective that is sorely lacking in larger organizations like DDD and DCF.
We need to find ways to keep a formal structure for those voices to be heard, for both children and adults with developmental disabilities.