No Boundaries

Tonight I was witness to the most interesting of sibling disputes. How do you define “volume” and “mass” and how are they different? [Don’t ask me!] Lucy and Ben got into a heated debate about this, and Ben ended up turning to his iPad for the answer. Both claim they are right. I had to settle this argument by diversion–I sent Lucy upstairs to clean the cage of Leona the Large (guinea pig).

What is the volume of a London Eye pod? February 2012

But secretly–as the parent of a child with special health care needs–I was thrilled with this fight. When Ben was in daycare and preschool, I wasn’t sure he’d make it past Kindergarten due to all his health issues (see the Education page for more details on this). Thankfully, after the trach, when he could *breathe*, he then began to grow, thrive, and learn. When he was 5 years old we realized he is terrific at mental math. Since then he’s become a compulsive reader. Those 529 college savings plans that our family’s Chief Financial Officer (aka Sherin) set up for each kid and our vision of Ben attending college independently no longer seems like such a far fetched idea.

Yet, even if Ben is at college somewhere, what amount of resources will it take for him to live independently? I’ve been following the progress of the Achieving A Better Life Experience (ABLE) Act of 2011, which is designed “to encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life”. The ABLE Act, known as H.R. 3423 and S. 1872, is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). The ABLE Act authorizes “ABLE Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, disability savings accounts will be exempt from federal taxation, and any amount under $100,000 can be saved without losing federal and state benefits.

What a great way for families like ours to responsibly plan for their child’s transition to adulthood. Autism Speaks and the National Association for Down Syndrome are two organizations with national presence who are advocating for the ABLE Act in Congress. Currently, the bill is in a House committee and it is projected to have a 1% chance of being enacted (apparently only 4% of all House bills are enacted). Somehow, the 140+ co-sponsors in the House and the 16 co-sponsors in the Senate know how difficult it is to save money for a child’s future when that child is receiving federal benefits. Because Ben is a Medicaid recipient–he is eligible based on a lifetime disability, not because of income–he can *never* save any real money. How is he supposed to support himself in the future?

Ben is probably one of the lucky ones, in that our CFO Sherin set up a special needs trust which, upon both parents’ death, a significant portion of our savings will be put in this trust and will then be dispensed to Ben by a designated person on a planned basis to meet his living expenses and needs. Until that time, all of the money set aside for Ben’s living expenses will really be ours, but we won’t benefit from 529-like tax exempt status on these considerable funds.

MA Senator Brown and Reps Tsongas and Frank are all co-sponsors–we now need to get the attention of Sen. Kerry on this issue! Our dream is of Ben going to college, earning a degree, finding employment, living independently, debating with his sisters—we don’t want that to fizzle. But there needs to be legislation in place that will allow him to keep the money he earns, allow family to contribute financially to his needs, and keep his state-supported health care at the same time.