Tallying the Cost of Special Needs

An article in yesterday's Wall Street Journal looks at the cost of a child with special needs -- not soaring medical bills so much as the thousands shelled out for therapies that never quite end.

The writer, Jeff D. Opdyke, writes of one family's dilemma: "Susan says that she and her husband originally expected they would have to stretch themselves for the first few years, but that after an appropriate amount of spending 'he'd magically fall off the autism fence. But that's obviously not the case.' Now, she says, 'we know we have to retire at some point, and we have to pay off our debt.'"

And, of his own daughter's speech impediment: "Throwing money at her disability seems the only option at the moment. Still, Amy and I know we can't continue funding this cost for a long time. At some point, we're going to have ask if this is really something that money can fix...or if this is simply who our daughter is."

The article reminded me of a book I recently reviewed, Act Early Against Autism, and the way the author and her husband spent so much on special schools for their son that they wound up filing for bankruptcy.

It reminded me, too, of the whole issue of potential, and the crushing feeling that if you don't do absolutely everything, at whatever debilitating expense, you will be destroying your child's future. Yet what does it do to your child's future to have no savings available for future needs, or to have one parent working extra hours to afford exorbitant treatments, or to have other family members lose out on opportunities because there is no money for anything other than relentless potential-chasing?

The fact that many therapies are not covered by insurance, and don't have the kind of research backing them that guarantees positive outcomes, and may not deliver constant noticeable progress, makes those decisions so much harder.

I know my husband and I have disengaged somewhat from the pursuit of pricey help. We're keeping up the private speech therapy, but things like therapeutic horseback riding and sensory integration therapy and arm-and-a-leg-priced special-needs summer camp and pursuing every new idea that comes along have fallen by the wayside. Part of that became necessary when I made a couple of income-reducing job changes designed to keep me closer to home. And part of that just happened when, as Opdyke wrote, we decided that this is who our kids are.

How are you handling the cost of pursuing your child's potential? Are you still throwing as much money at it as possible? Have you scaled down interventions and expectations, by need or by choice? Are you trying to do therapeutic activities yourself instead of paying others to do them? Share your financial feelings in the comments.