The Honorable Douglas H. Shulman
Commissioner of Internal Revenue
Internal Revenue Service
Attn: CC:PA:LPD:PR (Notice 2011-39)
P.O. Box 7604
Ben Franklin Station
Washington, DC 20044
I recently read the attached record that the National Down Syndrome Society sent you. As a parent of a three year old girl, I wanted to share with you how this decision impacts me personally.
When Brianna was born her DS diagnosis was a surprise, and we were inundated with information about the medical conditions she might suffer from, the need for special needs trusts, Medicaid and Social Security eligibility rules, and cognitive issues and therapies available. As you can imagine from reading that list, it was complete overwhelming and very stressful.
The most difficult part was when I was told Brianna could never earn much money or contribute to society because she would never qualify for medical coverage due to her pre-existing condition. She would be forced into Medicaid and government-imposed poverty. This was not the America I had known and loved for my entire life. In my America we each were given equal chance to rise to our full potential – that is the American Dream as I understood it.
Brianna is fortunate to live in a time of rapid change. Whatever qualms people have of the new healthcare law, it has cracked open the door of civil liberties and a path to independence for Brianna.
As a triumph of hope, in Brianna’s first months of life before her open heart surgery (at three months of age), we funded a 529 plan. Shortly thereafter, we learned that could impede her ability to get Medicaid or SSI income should she need it and we have since stopped funding it. We have also looked into transferring those assets to her younger brother’s account.
Today I went to Brianna’s first IEP – the Federal process to enter her into special education pre-school. While she has many medical and speech challenges, the school could not find her to have an intellectual disability – her cognitive function is within normal ranges. Partially we are lucky, but we have also worked very hard to improve her skills and abilities and are glad all of our hundreds of hours of therapies and tens of thousands of dollars spent on medical treatments are paying dividends that could enable her to have a very independent life – with the right opportunities.
It would be a wonderful moment of triumph to be able to begin to save again for Brianna’s college. How motivating it will be for her teachers to know our high expectations and to know we are investing money with full intentions of helping her contribute to society to the max extent possible. I believe that when parents are given that ability we will invest more heavily in these kids’ capabilities and teachers will follow suit. The end result will be more independent and productive members of society that are able to contribute to our tax base rather than partake in these entitlement programs. Yet, when dreaming and planning for a bright future pulls the safety net away from these children (as the current policy does), it is in no one’s best interest and it leads to perpetuate civil inequalities that have existed since the dawn of man, but are no longer needed or productive.
As a father I am dreaming and hoping that you grant me the ability to plan for and dream big for my three year old daughter. She deserves the opportunities my son and most other Americans will enjoy. She deserves the best I have to offer. And I am, like many parents, excited to be able to give her that. Please help us with guidance that gives my daughter the chance to achieve to her full potential and contribute to society in the most meaningful way she is capable of.
Hopefully it is clear how deeply I love my daughter. I also want to impress on you how important such a ruling will be in my entire family’s lives. Giving me the opportunity to invest in Brianna’s future education will force family and educators to invest more in their beliefs and their goals for Brianna and the expectations could dramatically change her life – and in doing so save our government more on entitlements and generate more revenue from people like Brianna to offset tax revenue losses on 529 earnings.