Buddy Walk on Washington :: The ABLE Act
I would like to think of myself of a seasoned lobbyist or at the very least, to say that I knew what I was doing. I can say neither. But attending the Buddy Walk on Washington gave me the inspiration to do it again. WOW! What an experience!
Let me give you a little background on what it was all about. First, there is this bill called the ABLE Act. (from the NDSS article with the Huffington Post - by Sara Weir) The Achieving a Better Life Experience Act. The current version of the bill was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses.
There are many details beyond this statement but essentially, if LB were to have more than $2,000 in assets in her name, she would not qualify for federal funding like SSI or Medicaid. So, if she wanted to go to college - saving for that is a bit impossible. If she works, she is limited on the amount of time she can work, etc. Kinda ironic when you think about it. When people say that those with intellectual disabilities don't contribute to society, they obviously don't take into consideration that the laws are written to NOT ALLOW them this right.
They also haven't met those that I met at this conference. Angie Cain has 6 jobs and works every day of the week, sometimes 2 jobs in one day. She has also been at some of them for more than 8 years! Simply impressive for any individual in today's workforce.
So, we had to attend face to face meetings with the representatives in our area to explain to them what the passing of this bill would mean to us personally. Many of them had already co-sponsored the bill so our goal was to thank them and our 'ask' was to get them to put it to a vote.
Btw - I HAD NO IDEA what any of this meant. I will admit, I didn't even know who I voted for. I didn't know who our congress people were. Now.. in my defense, I have followed KY my entire life and found it troubling when I had to vote in IL and then IN over the last several years...because I hadn't paid ANY attention. Nonetheless, I felt like I was able to gather a bit of a cliff notes version from my peers and at least keep up.
It was intense though. It was gratifying and it was SO WORTH IT! I will certainly go back. I would love to stay involved in these types of events and hopefully become a DS Ambassador for the state of IN. There is such a need for these types of roles and I really think it is something I want to learn more about.
Now here's the story I shared... mind you, I probably shed several tears to go with it. (I also articulate better in print than verbally so it sounds much better with this version, but you'll get the gist.)
I am the mother to Leighton who is 2.5 and also has DS. I am also the mother to Ashlyn, who is 15 months and does not. This bill affects our family greatly given that we are now a single income family. I recently left my corporate job to stay home and provide full time care for our girls mostly to be involved in Leighton's therapy sessions and development for both of my girls. Given the high cost in legal fees to implement a Special Needs Trust as well as the large tax that is applied, our family is struggling to set up any funding for our daughters. Not only does this affect my daughter with Special Needs, but our daughter without is greatly impacted as well.
If this bill isn't passed, we will have to rely on a SNT for Leighton and that could hinder our family greatly by adding additional financial strain, stress and pressure on an already tight budget.
My dream is for both of my daughters to have "THE typical" college experience. I want them to enjoy those years and focus on their studies, friends and campus life without the pressure of financial burden.
As a voter of IN, I didn't give politics much thought. I checked a box and went collected my sticker. As a parent, I paid somewhat more attention. After this walk, I will study and support the candidates that support causes close to me and that will greatly impact my family's future.
You get the picture. Now, imagine a room full of people with similar stories. The family that has faced/is facing cancer not once, but twice now. Who also has 2 children with DS to support. Or the family with 4 kiddos and a 12 year old that is already taking these things into consideration when planning his future. These are impacting stories and they need to be heard.
So if you ever wondered what you could do, share your story! Share it with whomever will listen. I will gladly collect them to take next year. Although, I do HOPE this is the year that the bill will pass. We have the support, now it just needs to happen. Its been 80 years since this bill has been touched. 80 years. Now to put it into perspective... people with DS had a life expectancy of just 25 in the 1983 but now are living well into their 60's. You do that math... makes little to no sense to not allow them adequate funding to support themselves.
Then you add in the fact that 50% of people with DS will have Alzheimer's by age 50 and you need to do some adjusting with funding, etc. This is where we ask to support more research with Alzheimer's and the link to DS. There are answers here to help our entire population. However, DS is the least funded chromosomal condition. Again, you do the math.
Ok, my soapbox is over. But I feel better telling you all this info. Now you know I went to DC. Now you see why I have been blowing up your Facebook and Twitter about this bill. It not only affects my family but everyone that has a child with special needs. And sadly, that number is increasing folks. Sad reality but we have to protect our own.
Thanks for listening!
Until next time...