This week is the Buddy Walk in Washington. It's actually not a Buddy Walk in the way most of you would assume, it's more of a march. Advocates march in Washington and meet with members of congress to discuss issues surrounding individuals with Down syndrome.
Currently, we are trying to get the ABLE Act passed. It's been a long time coming and it would make a huge difference in the lives of our children. You see, if we save money for Chelsea's future, like we would for any other child, she will be penalized the day she turns 18. More than $2,000 in your account - well shame, no Medicaid for you. You see, we just don't know what the future holds for her.
No doubt she'll do great things and hold a job someday, but it is a real possibility that her job will not include benefits. There's just this tricky area where many individuals with disabilities fall. They work, they make money, but can't support themselves or pay their medical bills. Why? They make too much to receive disability benefits, or else they have to be dirt poor in order to receive said benefits.
It's terrible. and terrifying. I know, we have 11 years to worry about it. But wait, ... really? Only 11 years?!!! Where has time gone? Anyways, while I didn't attend the Buddy Walk in Washington this year, I did write a letter for a fellow DSG member to drop off at Representative Jenkins office while she is there. Hopefully this will be a big week for our kids and many, many others with disabilities!
Dear Representative Jenkins,
I am writing on behalf of my daughter and all individuals with Down syndrome. I regret that I was unable to attend the Buddy Walk in Washington this year, but I wanted to be sure to pass my message on to you.
My daughter, Chelsea, has Down syndrome. In her short seven years she has endured more than most people will in a lifetime. She has proven to us time and time again that she is capable of anything. She attends a local public school here in Lawrence, KS, where she is fully included with her peers. She is reading, writing, adding and subtracting right alongside the other first graders. As a teacher myself, watching her succeed in the classroom is a dream come true.
Chelsea is unique though. Not only does she have Down syndrome, but she is also a cancer survivor. You would never know it by looking at her. She is one tough kid. Her chemotherapy left her with hearing loss in one ear, but she hasn’t let that slow her down. So you see, this pint-sized child has fought and SURVIVED cancer, has an intellectual disability, is hearing and visually impaired, but yet NOTHING stops her. One would think all of these barriers would be too much to overcome, but for Chelsea, they’re not. She remains mostly on grade level academically, she plays softball and gymnastics with her typical peers, she participates in Kung Fu classes with her brother every Friday night, and she attends birthday parties and sleep-over’s as any other seven year old would.
My question is, why wouldn’t we do everything we can to help her realize her dreams? She has already proven to us she will far exceed our expectations. Yet as it is, the law states that we will limit her earning potential as an adult and furthermore punish her success by taking away her benefits if she earns too much money.
I am asking you to sign on as a co-sponsor of the Achieving a Better Life Experience (ABLE) Act (H.R. It is 3423/S. 1872). We must pass the ABLE Act. This legislation also means that our family, and many other families like ours, can save for the future of our children with disabilities just as we do for their siblings. We need your help, Chelsea needs your help, please give us this opportunity.
Information on this bill and others can be found in the NDSS packet we are leaving with your office. There is information about priorities for individuals with Down syndrome, our concerns and whom you can contact to learn more.
I have stopped guessing what I think Chelsea will or will not be able to do as an adult. Her future is wide open and the possibilities are endless. We cannot put limits on her capabilities or her dreams. Please consider co-sponsoring the ABLE Act so that Chelsea, and others like her, can soar.
Thank you.
At the end I included a few pictures of Chelsea. One of her swimming, one of her playing ball, the super cute picture of her in pink and gray with long wavy hair, and finally a picture of her and Logan. Under the last picture the caption reads: Chelsea and her brother Logan, who has a college savings account. haha!
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