Recently, many U.S. companies have begun paying attention to the 6.3% of American children between the ages of 5 and 15 that suffer from a disability.
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The demand is huge. While federal laws govern disability rules, each state has different programs to aid families. Mess up the financial planning, and it could mean the loss of a disabled family member’s ability to qualify for Medicaid and Supplemental Security Income.
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These programs pay for most medical care, housing, and other community services. But under federal and state laws, those 18 or older with disabilities can’t receive such benefits if their assets exceed $2,000. To navigate around that, parents must set up a special needs trust so a child doesn’t own assets. The trust can accept and invest inheritances, and thereby supplement government benefits.
A growing crop of advisers is emerging to guide families through the financial, medical, and educational labyrinth. "There is no national network to tap to get information, so private industry is stepping in to fill the gap," says Charlie Hammerman, president of the Albertson (N.Y.)-based Disability Opportunity Fund, an investment and financial-services firm focused on special needs.
These small advisory focus on helping families locate resources to pay for medical and educational costs as well as plan for the future.
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"Finding programs is a complicated maze, and parents don’t know about them or have time to search," says Mary Anne Ehlert, a Lincolnshire (Ill.)-based planner with expertise in disabilities. Last November she launched Protected Tomorrows, a national network of advocates to help families find those resources. For an annual retainer of about $2,000, or an hourly rate of $150, Ehlert’s advisers find programs such as state scholarships to pay for autism therapies or grants to do home renovations for a person with cerebral palsy.
