Written by Jawanda B. Mast
The election is over. I have good friends on both extremes of the political spectrum and many who are dead center. While no one is 100% happy with every outcome, a common theme I hear around the country is that we want legislators who will work together to do what is best for our country. Now during this "lame duck session" of Congress when it is thought that you can't get much done because they want to push it off on the next group, I am optimistically hopeful that our legislators will do the right thing and pass the Achieving a Better Life Experience (ABLE) Act. A bill that has overwhelming bipartisan support and over 50% of the entire Congress supporting it, 240 cosponsors in the US House and 38 cosponsors in the US Senate. The bill is being led by a dedicated set of Congressional Champions, including Senators Casey and Burr, and Representatives Crenshaw, McMorris Rodgers, Van Hollen, and Pete Sessions.
What does this have to do with a pink house? My daughter Rachel is 13 and has Down syndrome. We live in Olathe, Kansas. Rachel and I have advocated at all levels of government. The symbol of Rachel’s march to independence is that she wants to live in a pink house. It has become a fun topic but it is a serious one for our family. Under current laws, Rachel is only allowed to have $2,000 in assets. Families of children with disabilities are warned almost from the moment our children are born of the woes of this law. We are told to set up special needs trusts (which is still a viable option even when ABLE is passed) and don't save in traditional ways for your child with special needs because you will jeopardize any government supports. While most of us don’t want to depend on government supports, the reality individuals with disabilities will probably need some help along the way. In essence these laws relegate many individuals with special needs to disability welfare.
For several years I have worked with the National Down Syndrome Society (NDSS) and other advocates from across our country to get the ABLE Act passed. This year, we have a strong bill that sets up 529 type savings accounts so families like mine can save money that will be used to help Rachel with expenses related to such things as a job coach, transportation to her job or school, assistance with her healthcare needs or home supports if needed, educational needs and finally to help her be able to have her pink house. There are payback protections built-in to the plan to help address fraud issues. Our family represents thousands of families who do not want to depend on disability welfare.
I am asking our legislators to do the right thing during this lame duck session. I am asking them to bring this bill to the floor and vote yes to empowering people with disabilities and their families. I am asking that the 112th Congressional lame duck session do the right thing and vote yes to Rachel’s pink house.