By Diane Perry
I want to thank the ARC of Snohomish County for giving me the opportunity to participate in their Leadership Development program. Words cannot describe the experience I have gained in this program. It has been invaluable.
I am the mom of a 17-year-old daughter with Down syndrome and severe autism. I also have three other children, and work full time as a fundraiser for ChildStrive, formerly Little Red School House. The Leadership Development program has given me the confidence and skills to advocate for my daughter, Emily. It is a daunting task trying to navigate your way around the system to ensure that your child has the services she needs and deserves. Being able to access the services you need for your child and your family should not have to be so challenging. But in reality it is. There are so many families that just give up, or worse, don’t even try in the first place.
In Washington state there are 14,000 families on what is called the “no paid services” wait list. These are families that were brave enough to navigate through the system and get their child registered with the Developmental Disabilities Administration, but unfortunately that is where they stay; on a waiting list. They qualify for services but the state does not have the funds to provide them with something as simple as respite care. These families are no different than my family. I was just lucky enough to be at the right place at the right time when I made the call to DDA and got Emily signed up for services. It shouldn’t be so random.
I was given the opportunity by the ARC of Snohomish County to go to Olympia during this last session and visit my legislators and tell them my story and also what I think needs to change. My first visit was with Sen. Barbara Bailey. I was by myself and terrified. I met with her and told her my story and showed her a picture of my family and asked her to support people like my daughter, Emily. Her reaction was that of compassion and concern. She also told me that a bill was going to be introduced that would help the families on the wait list.
Senate Bill 6387 was introduced and I went to Olympia and did something I never thought I would have had the nerve to do. I testified in front of the Senate and told them my story and why this bill needed to be passed. I watched the long process and followed the bill to the very end. I am happy to report that the bill passed and will be signed by Gov. Inslee. It is a step in the right direction for those 14,000 families. It also is a testament to the importance of showing up and telling your story.
Going into the program I was very apprehensive and didn’t have the confidence that my voice would be heard. Kelly Church and Shayne Nagel, along with the rest of the amazing staff at the ARC, put my mind at ease immediately and I knew that I was meant to be in this program. And now I know my voice will be heard. They have encouraged me and built up my knowledge base in current legislation and how to go to Olympia and talk with legislators and testify. My daughter Emily cannot speak for herself, therefore I am her voice. I have taken everything I have learned back to ChildSTrive to implement an advocacy group with our families. I want to give new parents just staring out on their journey the tools they need to give their kids with developmental and intellectual disabilities the best opportunities available to them.
Diane Perry lives in Snohomish. She is the Development Director at ChildStrive, which was founded by parents and the South Snohomish County Exchange Club in 1963, ChildStrive is a community-based service provider for families with children, ages birth to three who have developmental disabilities, developmental delays, or are at risk of falling behind their peers.