Today was a day filled of fear, being proud, way out of my comfort zone, and a bunch of other emotions. Today I went to Capitol Hill and talked to Illinois Representatives and Senators to advocate for individual with Down syndrome during the Buddy Walk on Washington. Our objective was 3 fold:
1 – Get a law passed to take the ABLE act a step further. If you aren’t familiar with the ABLE act it allows individuals with disabilities to open a savings account and have assets of $14,000 in their name (see more here). Before they couldn’t have more than $2000 in assets or they would lose their benefits (such as SSI and Medicaid). So today we went to Congress to get the the amount raised to $26,000 for working individuals. Now honestly this only brings them to the poverty level… yes I said poverty level!! We have so many individuals that want to work but they can’t or they take very little wages so that they don’t mess up their benefits. Yes you heard me, they want to work and are willing to work but they get penalized if they earn a wage over $14,000 a year. That wouldn’t even cover the cost of rent for an apartment and groceries!
2 – We wanted them to join the Congress for Down syndrome Task force. Now this wouldn’t cost them anything, basically they just get signed up on NDSS’s mailing list to get current and accurate information about upcoming disability bills.
3 – We would like them to sign on to to the Prenatal Bill that would give women that received a prenatal and postnatal diagnose of Down syndrome current and correct information. There are new tests (that are only 99% acute) that could give mom’s an early diagnose of a possibility of Down Syndrome and when these women are given the news of Down syndrome they are rarely given other important and acute information. This bill would make physicians aware to the materials that NDSS has already created and are happy to supply.
So there you have it… one day with 200+ talking to Congress about these important issues that need to get passed! Laws don’t get passed if we don’t speak up and let our congressmen know what we want and need. There is nothing more powerful than a meeting filled parents, friends, self-advocates and siblings all advocating for someone we love. In our group this year we had a wonderful self-advocate, Gigi C, and it was such a joy and so uplifting to see her speak up for her rights.
I think next year I am bringing the whole family with me. I hope to see you there too!