Magazine article The Exceptional Parent

Family Advocacy

Magazine article The Exceptional Parent

Family Advocacy

Article excerpt

As we all take a collective breath and recover from November's divisive election, it is not just the political junkies among us who are looking to the future. As families raising children who have special health care needs and disabilities, our daily lives are likely more directly impacted by the policy decisions of our elected officials than those of our neighbors. Does this mean that this group of families is more engaged in public policy, advocacy and partisan politics? Should it? The answers and issues are complex, so complex that now is the perfect time to start planning to increase engagement for both this policy cycle and for future elections.

The 2012 National Forum on Disability Issues--held in Columbus, Ohio, at the end of September--was the second event (the first event was held in 2008) that sought to elevate discussion of issues that impact Americans living with disabilities and special health care needs. In reality, the diversity of experience is as broad as the general population. Families with such personal experience come from all walks of life and the full spectrum of political affiliations and non-affiliations. The fact that disability policy has often been pointed to as a non-partisan issue resonates broadly, as most American families can point to a connection to an individual living with a disability or special health care need. We are every family in America. Our issues have gotten more play in recent years; disability in general and Autism, specifically, were raised in this fall's first presidential debate. And health coverage for those with pre-existing condition serves as the common ground talking point within the divisive issue of health care reform. Why then are we not a larger part of political dialogue in America?

Hanging on my door is an explanation of some of the reasons. Sue Stuyvesant's essay, "Where Are the Parents?" eloquently captures the real additional daily stresses and burdens that families raising children with disabilities and special health care needs face. In reality, although public policy is critical to our daily lives, our daily lives may make it difficult to engage. Another reason can be found in my email inbox. Many diverse groups seek to speak to and for families, and these groups often do not speak to one another effectively. A family can be affiliated based on diagnosis, age range, program eligibility, treatment plan, treatment site, interest in cure, or an endless list of other factors. Many receive confusing and conflicting action alerts and policy guides. Civic literacy is not a particular strength of the American public, and families are no exception. Understanding which levels and branches of government impact which pieces of the systems that touch our lives requires some insider knowledge and a commitment to maintaining a knowledge base in the ever-changing world of district borders, elected and appointed officials, key staff and public comment opportunities. When I ask individual families about the barriers they see to involvement in policy and politics, the most common responses center around fear or intimidation. They voice concern about not knowing enough or being the right kind of person to speak up.

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Given all the barriers, will the family voice in policy and politics remain limited? Not at all. I see endless reasons to believe that our voice is growing and that families' voices will be the determining factor in the policies that impact them in coming years. The digital age we live in allows families to engage and have an impact at times, and in ways that make sense for us. …

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