When we received the prenatal diagnosis of Froggie having Down syndrome many things went through my mind. One thought that kept coming back, over and over, was about what his future would look like. Will he be ok when he is an adult? Will he be able to support himself? Who will look after him?
There is no way to answer these questions now but I can do everything I can to prepare him to grow up to be an independent, productive member of society. That is the best I can do, right? Wrong. I can make sure that the laws support us in this!
What happens to people with disabilities when they grow up? The system is stacked against them. Many people with disabilities really depend on Medicare. Health insurance is so necessary, especially for people who have more health problems than typical. The way the system is now a person can not earn more than $674 a month or have more than $2000 in assets or they loose their benefits. This may include SSI, food stamps, Medicare and other programs.
The ABLE act is a change to the tax code that allows parents of disabled children to save for their future the same way we can save for college for other children in 529 accounts. It allows the disabled person the ability to save some money to live on and use to clean their teeth or buy clothes or even go to the movies with friends.
When Froggie grows up will he be force into poverty and inactivity? Will he sit home and feel useless even though he will have the skills to be a productive, tax paying member of society? How will he feel about himself if he is told he can not work and contribute like everyone else?
On August 15th I had the great pleasure of going to Senator Dianne Feinstein’s office with members from the Down syndrome community. We met with her State Director, Trevor Daley, and told him our stories and why this bill is so important to us. We are asking Senator Feinstein to co-sponsor the bill.
I took both Froggie and Peanut with me. I think Froggie did an amazing job looking cute and Peanut was polite and quiet. Hopefully he will remember doing this when he is older. I had an opportunity to share my family’s personal story with Mr. Daley and it felt amazing to actually be doing something about this very important act. We should hear back in a few weeks if Senator Feinstein will add her name to the growing list of sponsors.
For more information about the ABLE Act you can go HERE. Please contact your Senate and House representative and ask them to sponsor this very important, life changing bill! Froggie is depending on you!