legislative advocacy training

This weekend a group of us headed to Olympia for a legislative advocacy training on the very important issue of.....hmm, I wonder. The rights of those with developmental disabilities of course! :)

I am thrilled to be a part of this program. It took a lot of coordination to get enough nursing coverage for Maxwell for the weekend, but it all came together and the training was a huge success!

Sweet and generous Max had shared his germs with me the week before (thanks Max), so I almost had to cancel my participation because of some pretty rough bronchitis. We had to use all of our week's nursing hours to cover the weekend, so unfortunately we were both not feeling well and both not sleeping well...not a good recipe for getting better! Fortunately the doctor loaded us both up on a lot of medications a few days before, and I was able to attend. (We are both now on the mend pretty much...Max might need another appointment because he is still dealing with increased O2 needs, inhalers and green "boogies.")

The weekend was very interactive and informative. It was truly awesome to see people go into the training feeling apprehensive and unsure of their involvement in the legislative process...and then leave the weekend feeling inspired and ready to take action!

We had an opportunity to spend some time with Cecile Lundquist, an amazing leader in the developmental disabilities civil rights movement. (She also helped develop this leadership program.) As one participant said, it was a true Oprah moment meeting this woman in person. Cecile helped craft the WA state legislation for special needs education. Our state was the very first state to enact such legislation and this became a basis for the federal legislation, IDEA (Individuals with Disabilities Education Act).

Cecile got involved in the process because she discovered that her cousin, Tom, wasn't allowed to go to school in the Seattle School District because he had a diagnosis of Down syndrome. It is truly amazing how one person's passion can make such a tremendous difference! What an inspiring woman! And she still remains incredibly active and passionate today.

It's incredible to think just 40 years ago that Maxwell would not have been allowed to go to public schools. Not worthy of an education? Wow. It is difficult to imagine. While we still have a lot of work ahead of us, I am extremely grateful for Cecile and others who have made such tremendous progress for our children.

One example of the work ahead of us is the Infant Toddler Equity Act (ITEA), which ensures adequate funding for early intervention. This program has been incredibly beneficial for Maxwell and helps fund his numerous therapy appointments. Currently there is often a long waiting list for services and then there are only enough resources and providers to see children on a periodic basis. (Max has been fortunate to have alternative funding for his extensive therapy needs...and he has one very assertive, determined mommy who simply doesn't take "no" for an answer!)

We had the opportunity to "role play" testifying on this and a few other key issues. I was asked by some of the staff to consider testifying this year on behalf of the ITEA and the Behavior Crisis bill. The intent of the latter legislation is to provide intensive therapy and support for those dealing with severe behavior issues of individuals with developmental disabilities. The goal is to provide the resources before the parents are overwhelmed and place their child in an institution. With the probable behavior issues associated with CHARGE syndrome, this is a very important piece of legislation to me.

I am grateful that I have had this unique opportunity and look forward to help making a difference in the life of Mighty Max and all those dealing with developmental disabilities. Very inspiring and worthy cause!