Thursday, December 18, 2014


We've been active in voicing our views on the ABLE Act, especially to our senators and representatives. I've been tweeting up a storm, emailing, making phone calls and receiving all the updates from the NDSS. 

The ABLE Act stands for "Achieving a Better Life Experience". The bill will allow families who have a child with a disability to save for their long-term care through 529-style savings accounts.

One of the senators from our state, Sen. Robert Casey Jr., was a key sponsor of the bill. So imagine my surprise when the other senator from our state, Sen. Pat Toomey, voted against the bill. 

Yesterday, he received this note from our family: 

Dear Senator Toomey,To say I'm disappointed in your "Nay" ABLE Act vote is an understatement. During your campaign, I believed in you. I've heard you talk about welcoming all children into the world and have lived that message, as our son Porter was born with Down syndrome almost three years ago. We found out early in the pregnancy and while the medical community pushed for termination and talked about the awful prognosis, we believed that he deserved life. Almost three years later, our son is amazing. He's the best thing that happened to us! We've met so many amazing people and have become part of a community knit together by an extra chromosome. We have learned much about how to best enable our son to live an active and productive life. We've learned the law. We set up a special needs trust shortly after his birth. But there are so many families in our situation who don't have the knowledge, who haven't been educated. Most of these families are from low-income areas. Why should their children not have the opportunities that our child has? The ABLE Act is a small step in leveling the playing field for some families. It's not the end solution, but it's a start. I struggle with reconciling how you can support all life, but not support your disabled constituents. If the opportunity should arise in the future, we would love to meet with you to discuss. There is no doubt that the system is broken in so many ways. Our experience with Early Intervention and now, as we transition into the Intermediate Unit, has shown how effective and ineffective some agencies can be. Change is needed. We'd be very happy to become actively involved in effecting that change. 

I haven't received a response other than the form template response and am not sure if I ever will. I'm just so happy that the majority voted for this bill. And I'm hopeful the President will sign the bill into law soon. One small step to help make the future better for all Americans with disabilities! Because their futures should be merry and bright! 

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