Serving on Committees as the Parent of a Disabled Child

It’s flattering to be told you are an exceptional parent and to be invited to join a committee or a board of directors. The first time I was invited to join one of these groups, I immediately agreed. I felt flattered to be invited. It was validating to be recognized as someone who could meaningfully contribute. It also felt as if they recognized I was an exceptional parent. 

However, it slowly dawned on me that all the parents I knew who had kids with disabilities were just as involved with their child as I was. We had to be because they needed so much. So, the next time I was singled out as exceptional, I challenged it. Many of us are. 

The next time I was asked to join a group, the invite was to join a Board of Directors for a nonprofit organization. Again, I jumped at it. At every meeting, I was asked what they should do to help families. Every time, I said parents need respite care. Everyone tells parents of kids with disabilities to get respite care. However, unless you have a Medicaid Waiver, you can’t find anyone to pay for respite care or workers to do it for you. I was finally told that “there was no money in respite care.” I was surprised at this concern, given that it was a nonprofit organization. 

Not all committees are created equally. After 36 years in this world of disability, I have learned a few things about serving on committees. 

1. Don’t waste your time on committees that will not make a difference in families lives. If they create goals that can easily be checked off or if they check off goals that were only partially met, don’t stay. You don’t have to make a dramatic exit. You can say that it isn’t a good fit for you right now.  
2. Being on a committee is not about who talks first, the loudest or the most. Getting angry is never appropriate. Listen to the items presented, ponder them and then speak if you have something to say that hasn’t already been said. Don’t repeat something that has already been said.
3. Never join a committee or workgroup if you don’t have the time to commit. We are all busy with our own children. There’s a lot of power in saying “no” and taking care of yourself first! My kiddo got easier to care for as he grew, so I had some time to spare for joining committees.

My favorite committees were the ones where the parents led the group. The Children’s Policy Council* was my all-time favorite – I learned so much there and we saw results. We made recommendations to the Legislature and State Agencies and in each Legislative session, some of our proposals were accepted. This website was one of those recommendations. Now, that is a great feeling!

*The Children’s Policy Council has changed its name to Policy Council for Children and Families, in case you want to look at it for open positions.