Making A Plan for A Special-Needs Child

A patchwork of benefits and programs can help relieve the crushing costs, but planning for the long term is essential, too. 

- Kimberly Lankford

JESSICA AND NATHAN PUGH’S 5-YEAR old son, Lachlan, has a rare brain malformation that affects his motor skills, but that doesn’t seem to slow him down much. Lachlan enjoys zipping around in his motorized wheelchair, and he is content to spend hours in the toy aisle at Target. “He’s a very stable, happy and super fun kid,” says Jessica. “He loves Spider-Man and Disney and is full of surprises.”

Lachlan also needs constant care. His condition impairs the development of the skeletal and muscular systems, and he also has difficulty with speech and swallowing. Lachlan gets around in a wheelchair or with a walker, and he has to use a feeding tube. He spent his first 104 days in the neonatal intensive care unit. “They thought it was likely he wouldn’t make it,” says Jessica.

The cost of raising any child is steep, but for a child with special needs, it’s astronomical. It can cost more than $250,000 to raise a child (not including college), but the cost can be more than twice that for a child with disabilities—and much more if lifetime care is needed, says Adam Beck, director of the MassMutual Center for Special Needs at the American College, which teaches financial professionals about special-needs planning. Insurance doesn’t come close to covering all of the expenses, but you are entitled to benefits and programs that can help. As the Pughs discovered, it often takes patience and persistence to find them—especially when you’re managing your child’s health care. Meanwhile, long-term financial planning is essential to make sure that your child continues to receive the best possible care, even when you can no longer provide the care yourself.