A rare Sunday blog with a message from Rachel.
Tomorrow morning I’m headed to Capitol Hill. I’m honored to be part of the National Down Syndrome Society (NDSS) advocate entourage heading to DC for the House Vote on the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313.) I’m excited. I’m nervous. I’m happy and teary all at the same time. I’m disappointed that Rachel won’t be there. Rachel and her pink house have become quite a symbol and they have quite a following. She needs to be in school though. She needs to be in school doing what 15-year-old girls do. That’s part of the reason I have worked so hard for almost eight years for this legislation. This legislation will be the first major piece of legislation affecting Americans with disabilities in nearly 25 years. Certainly, Rachel is central to my motivation but I have always tried to work on behalf of all individuals with Down syndrome. When I left my job as the ED of the Down Syndrome Association of the Mid-South, I sent a message to our families saying that it had been my great honor and privilege to work on their behalf. This week, it is again my honor and great privilege to represent families, families who need the ABLE Act to pass. We will see history in the making and we will see Rachel and so many others afforded the opportunity to be more like everyone else. If all goes well, this week the playing field will be a little more level and people with disabilities will be able to save for their dreams – just like everyone else. So I guess it’s appropriate for Rachel to be in school this week with her typical friends. About 40 years ago some families sacrificed much so we would have IDEA and she could live that dream. I guess this week is our opportunity to pay it forward.
NOTE: Thanks to the leadership of the National Down Syndrome Society, Senators Casey (D-PA) and Burr (R-NC), Congressman Crenshaw (R-F) and Congresswoman McMorris Rodgers (R-WA) and to my own Congressman Kevin Yoder (R-KS) and Senators Jerry Moran (R-KS) and Roberts (R-KS) for their support of Rachel and the ABLE Act.