The Cost of Caring for a Child with Special Needs

Jeff Howe’s story in Money Magazine about the costs associated with caring for a child with special needs is very good and worth reading (his son Finn is diagnosed with cortical vision impairment, autism spectrum disorder, and developmental cognitive disability). The costs and sacrifices Howe and his wife have to make puts a huge strain on their finances and relationship, but they are eventually able to have a thing families in their situation would love to have: more money.

Our version of financial planning at the time was to cross our fingers and hope the checks coming in totaled more than the checks going out. And until recently they had. Alysia now writes essays and memoirs; I teach, and write freelance about business and technology.

In 2006, I coined the term “crowdsourcing” in a feature for Wired magazine. A fat book advance was followed by well-paid speaking engagements and then, in 2009, a Harvard fellowship. I joked that God gave us a lot of money, and a son to spend it on.

In short, our life after the diagnosis was characterized by financial fortune and unending upheaval. We moved three times, enrolled our children in three different daycares, and conferred with nearly a dozen neurologists, pediatricians, dietitians, gastroenterologists, geneticists, and ear, nose, and throat doctors.

Even so, the Howe family doesn’t see the money lasting forever — especially if they’ll be caring for Finn into adulthood as well: “Unless we receive some windfall, our combined savings and the SSI benefit won’t come close to covering the $100,000 a year, in 2012 dollars, it could well take to care for Finn, who will need 24-hour attention, continuous learning, and a way to get to and from wherever he needs to go.”

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