Yo soy La Lay

adventures in family, faith, and Down syndrome

Fruit Day

on February 24, 2014

It’s fruit day.  Ugh.

Occasionally, when I find myself veering off the healthy eating path, I do a slightly modified week of this crazy diet (found here) to help get me back on track.  I have found that it really helps me cut a lot of cravings and brings me back on track.

However, day one is brutal.  24 hours of nothing but fruit.  Originally, I thought this sounded glorious!!  I love all kinds of fruits!  What could be so bad about a day full of fruit?

Except now it’s noon and all I really want is a pickle.  Or lettuce.  Heck, I’d even take a brussel sprout.  Anything but sweet!  The day just makes me really cranky.  Which makes it a perfect day for me to write vent about the financial future of my daughter and the ABLE Act.

This is long and complicated, but as the law currently stands, when Tessa is an adult, she will have to stay “poor” in order to continue to receive any services that she may need.  How poor?  She will not be able to have “resources” of more than $2000 or she will no longer qualify for things like Medicaid or Supplemental Security Income.  Under the law, she cannot have a college savings account, real estate, a retirement fund… the list goes on.  If John and I die before she does, we cannot leave money in her name to provide for her future.  There are some loopholes here, but with the advances that have been made in understanding the development of children with Down syndrome (and many other disabilities), the system in place is antiquated and needs to be replaced.  These children can go on to higher learning.  They can save for retirement.  They can do many, many things that we may not have thought possible!

Current legislation aims to make those changes.  A few days ago, I posted a link to a petition to urge the US House of Representatives to pass the ABLE Act (here’s the link) so that Tessa could potentially save for her own future.  And here is where I get frustrated.

Many, many, many people that I know, love, and appreciate, signed the petition and I am forever grateful that they have taken the time to do so.  The goal is 300,000 supporters and I’ve been watching for a week as the number has slowly ticked upward.  We are still short a little over 65,000 signatures to reach the goal.  And last Thursday, after the controversial Women’s Figure Skating Olympic medals were awarded, a new petition to remove anonymity from figure skating judges attracted over 2 MILLION supporters in less than 24 hours.

I’m sorry, what?

Which is the lesser cause here??  

Admittedly, I probably would not know anything about the ABLE act if it were two and a half months ago and Tessa was not here yet.  I would still support the darn thing, if I knew about it, but there has to be some way to make people aware of the bigger issues.  This act affects more than just people with Down syndrome.  It’s for all individuals with disabilities (or as we’ve come to call them in our home, different abilities).  It matters.  Certainly a lot more than some silly figure skating competition.

I think I’ll go eat a potato now.


2 responses to “Fruit Day

  1. Julie says:

    Well said! I just signed the ABLE Act petition, and I did NOT sign the figureskating petition – so that counts as two signatures, right?! On a serious note, I got a “guy” (actually a gal) for Special Needs Trusts if you need one 🙂

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