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Special Needs, Crushing Costs

Parents with disabled kids have some options but must also dig deep into their own pockets

Decked out in an authentic Florida Marlins jersey that fell to his knees, 7-year-old Adam Jones stood tall in the infield at Miami's Pro Player Stadium. At the signal, he threw the first pitch for the Apr. 25 game against the Atlanta Braves in honor of Autism Awareness Day. Adam, an avid Little League player, is autistic. He has come a long way from the days in 1999 when he didn't speak, made no eye contact, and wore a special helmet to protect him from his violent head-banging behavior. After years of extensive and costly therapies that still continue, Adam now attends a regular second-grade class. While his progress is priceless, it has come at a huge out-of-pocket cost to his family: About $150,000 since he was diagnosed at age 2. That does not include the $50,000 spent on therapies for Adam's brother, Jeffrey, 9, who has Asperger Syndrome, a high-functioning form of autism marked by deficiencies in social and communication skills. "Health insurance pays very little, and we have no retirement or college fund because everything goes into these kids' therapies," says Joni Jones, 44, a registered nurse. The boys have four other siblings, but neither she nor her husband, Larry, 42, a family law attorney in Toms River, N.J., hesitate to "make the investment now so we can increase the odds" that our sons will be productive members of society later, says Larry Jones.

The Joneses are hardly alone in needing to confront the problems of special-needs kids. More than 10% of U.S. households have offspring -- adult children included -- with special needs, according to the PACER Center, a Minneapolis-based advocacy group for families of children with disabilities (pacer.org). Those disabilities include autism, emotional and behavioral disorders such as attention deficit hyperactivity disorder (ADHD), and other learning problems such as dyslexia. Most everyone knows someone who is affected -- it could be your neighbor or the boy sitting next to your daughter in the first grade.