Are you ABLE?

When I was in high school, I worked my tail off academically and literally. I began working my first part time job at 15 while playing high school sports and remaining active in all chapters of anything that had a label to it. I was in the National Honor Society, Beta Club, class officer.. you name it, I tried to do it. I applied for every scholarship I could find to take my application. I was determined. I knew that going to college had to come from my own pocket. So, it was all up to me.

Then I started filling out the financial aide forms. I remained hopeful because I wanted to go to an in-state college 4 hours away, and knew that would take some extra money I didn't have saved. With my bags packed, I received a letter in the mail just a week before I was supposed to leave that I didn't qualify for any financial aide. The reason? Because I worked during high school and in the governments eyes, I should've been saving ALL of that money for school. Never mind that I only worked part time at minimum wage and life expenses that put me to work in the first place.

I was crushed. I picked myself up and went to community college free for the first year because I did receive some scholarship money that paid for it. So it was back to work for me to pay for the rest of the 6 years that it would take me to get through school.

So what's my point? Why the Oprah story? Well, I don't want this for my girls. I want the ability to provide a future for them. I want them to know that they have a security to fall on if they need it. I want to know that they are going to be taken care of if I am not around to do so. As any parent wants for their kids, right?

Well, currently, that ain't so simple for people with a disability. First, we can't just start a college fund for Lb or open a bank account for her and start funding it. If she has a rich aunt or uncle to leave her some big buncha money, can't happen. But why not, right? You would think it would be the reverse wouldn't ya? That it would be easier to make this happen; especially if someone's future will require them to be financially dependent on someone else?

Well, it's not. That's why there's this whole hoopla about the ABLE Act. It's short for The Achieving a Better Life Experience (ABLE) Act of 2013. Without getting too political.. because I am SO far from that, here's the gist.

We can't have any more than $2,000 in Lb's name at a given time or she will not be eligible for Medicaid. Which by the way, she's not even eligible for until she's 6 because we are on a waiting list. Not sure if they think she might shake this extra chromosome or something.. but that's the rule. So we have to do special savings approaches for her and make sure she has a special needs trust and a power of attorney, guardian; our will has to be in order and we have to make an estate... it's seriously madness. I get the whole guardian, estate planning, etc.. I understand why that's important for anyone with a family of any type. But the fact that our daughter is barely 2 years old and already facing the hardships of a jacked up system is enough to make me sick. Sorry, just keeping it real.

When my 'situation' occurred back in '96, (tellin my age - eek), I shook my fist to the Powers At Be! I cried and swore off politics. Now here I sit, many, years later facing even greater frustration because this isn't something I can just get another job to 'fix.' This is my daughters future. Nevermind the fact that I want her to experience college life to some capacity, or that she may want her own apartment, or that she WILL have a job and can't work full time because her pay will be capped to avoid eliminating her benefits... It's hogwash and it angers me!

25 was the life expectancy for someone with Down syndrome two decades ago. Today, the approximate life expectancy is 60! (Thank you Dawn Buckley for the fact sharing) That adds a great deal of expenses for someone that might or might not live in an assisted living situation, on their own or even with a relative. That's 35 years of improvement and no one has thought about changing the laws with these wonderful life advancements? Come on people.. get it together!

Funny considering what is going on this week in government. Guess this is small change considering...but it's big in my world.

Below are some additional writings from the NDSS website.

The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX). 

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.

- See more at:

I do hope they all get their heads outta their tails soon and figure this stuff out. I know there are bigger fish frying right now but that won't stop me from speaking my piece.

Until next time...


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