My daughter was born with Down Syndrome, and so while she is only 4-years-old my husband and I have some serious concerns about providing for her future.
For us that means more than making sure we put some money away for college.
But it's a minefield.
Do we put away money and hope that we don't negatively impact her ability to get health insurance through Medicaid, if she ever needs it, or even to qualify for Social Security. Or do we not put anything in her name and hope the current social safety nets don't disappear.
Just today I found a notice from the National Down Syndrome Society in my e-mail inbox.
There's an alternative being offered up, but Congress needs to act. And so far none of Connecticut's delegation to the House of Representatives have stepped up to help co-sponsor the bill.
In very simplistic terms the bill (HR 2370) would establish a savings vehicle similiar to that of 529 college savings plans. What is allowed for withdrawals from the account is much broader but in theory that's how it would work.
A big bonus is that these accounts are designed not to impact Social Security and Medicaid benefits.
According to the NDSS: "Important aspects of the bill include: Anyone can contribute to the financial security of a loved one; Accounts are to be used for qualified expenses not compensated for by insurance or other sources: Educational expenses, Medical and dental care Employment training and support, After the age of 18, housing and transportation expenses, Moving, Assistive technology, and Community-based support services; Contributions are capped at $500,000."
Now these accounts would benefit more than just those with Down Syndrome. Any family who has to plan for a child who has a disability would benefit from a long-term planning tool.
Please take a minute and think if anyone you love is facing the troubling problem of planning for the future of a child with special needs and then contact your state's representatives and ask them to sponsor (and vote) for this bill.