What will happen to my child when I'm gone? The question haunts many parents who have a son or daughter with a disability such as autism or Down syndrome. How will they pay for the things they need?
To help parents answer that question, Congress ought to pass the Achieving Better Life Experience bill. It would allow families to set up tax-advantaged savings accounts for disabled children, much like the popular 529 accounts used to save for college. Money in ABLE accounts could be used for expenses such as education, housing, transportation and health care.
To be eligible, a disabled person would have to qualify for supplemental security income benefits through Social Security. Long Island had 41,370 SSI recipients in 2012, said Sen. Charles Schumer (D-N.Y.). Providing for them can squeeze family finances. It can cost $17,000 a year more to care for a child with autism than one without the disorder, according to the Centers for Disease Control and Prevention.
Contributions of after-tax dollars, up to $10,000 a year, would be allowed. The investments would grow and be withdrawn tax free.
Currently, a disabled person with significant assets might not qualify for means-tested aid, such as Medicaid. So setting money aside for a child's future can make it more difficult to meet their needs now. ABLE accounts would spare families that dilemma. Money in the account would be disregarded when determining eligibility for most federal programs. And withdrawals for qualified purposes wouldn't count as income for a disabled account holder.
These accounts would not end parental worries about how their disabled child will make it when they're no longer here. But they would help families prepare for that fateful day.