Awhile ago I posted about the Achieving a Better Life Experience Act, which would allow parents of kids with disabilities to create tax-advantaged accounts for their children's medical, housing, and other living expenses. I emailed our Representative, Pete Stark, about this bill (only the first few lines are what I wrote - the rest is from the sample email from the Fragile X Foundation). Here's what I wrote:
...As the parent of a three-year-old with fragile x syndrome, I ask that you support this bill. It will be an enormous help to us as we plan for our child's future. We opened a 529 Education account for him before he was born, but it is unlikely he will ever be able to attend college. He already shows delays of 50% or more in every area of development. In his areas of greatest delay, his age equivalent is just 12 months old. On behalf of the individuals and families impacted by Fragile X living in California, I am writing to ask you to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA). The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.
The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal program. Asset development is one step towards improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.
If you would like to cosponsor this legislation, please contact [Bryn McDonough (202-224-6324) in Senator Robert Casey's office or Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office]. Thank you for your consideration of this very important piece of legislation.
Today, I got this response:
Thank you for contacting me about HR 1205, the Achieving a Better Life Experience Act of 2009, which would create a tax-advantaged savings instrument for parents to invest in on behalf of children with disabilities, and prevent these accounts from disqualifying the child for federal entitlement.I do not normally support these kinds of tax-free savings instruments in the tax code. However, in this case, I think that if the tax code provides instruments for parents to save for the well-being and future of a child without a disability through college accounts, there should be a similar opportunity to save for the future of a child with a disability. In addition, I agree that federal programs that are intended to improve the welfare of our most vulnerable must not create a perverse incentive for family members to not save money in the child's name for future care. Upon your suggestion, and the input of other constituents on this matter, I have decided to co-sponsor this legislation.
Time is flying by!! - We have had two competitions. One was in February in Athens, GA and the other in Nashville, TN. Ian had a great time and did great! He loved meeting new...
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