Parent Involvement on the Interagency Coordinating Council (ICC) By Samuel Caraballo
By Samuel L. Caraballo, ICC Parent Representative Boston-Metro
As a parent of a child with developmental disabilities, I am often busy trying to catch up with my daughter’s medical appointments, evaluations and therapy sessions. Meeting the needs of an exceptional child is a full-time commitment that leaves many parents like myself feeling apathetic toward the policy aspects of disability services. However, in my time in the ICC I have learned that getting involved in the policy-making process for early intervention services is as important as taking my daughter to her medical appointments. While doctors and health care providers deal with my daughter’s developmental issues, the decisions taken by policy makers determines the extent to which those same impairments become actual disabilities. It is for this reason that I have embraced the challenge and the opportunity to participate in the ICC as a Parent Representative for my region.
In the ICC, I have had the chance to sit side-by-side with heads of state agencies responsible for orchestrating the complex network of early intervention services. Our discussions about budgets, training requirements for providers, and effective use of resources have helped me understand the myriad of issues that our agencies have to consider at the time of implementing their guidelines. Nevertheless, those same conversations at the ICC have made me realize that policies aimed at improving the lives of vulnerable kids are inherently incomplete without robust parental input.
As parents and caretakers of non-typical children, we are able to inform agencies about issues not accounted for in our current network of services. More importantly, as caretakers we are able to provide substantial evaluative input about programs and legislative initiatives. The agency leaders who attend the ICC know this, and that is why they encourage parents to voice our concerns during our meetings.
In all honesty, I think we still have a ways to go to make sure all children with disabilities in the Commonwealth have access to appropriate early intervention services. Nevertheless, the inclusive and participatory nature of the ICC is a harbinger of things to come. We all play an important role in making sure we serve the most vulnerable children in our state. I am honored and grateful for the opportunity to voice the concerns and ideas of so many parents and caretakers that are committed to providing a better future for their children. Therefore, let us continue pressing toward that goal.