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Monday, April 22, 2013

The Costs of Caring

It is important not to see ASD people as "costs."  They can make great contributions to society.  Nevertheless, the costs of caring for people with autism -- especially children -- deserve frank attention.  Jeff Howe, the journalist who coined the term crowdsourcing, has a son named Finn, who is on the spectrum.  He writes at Money:
What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common: Within the "autism spectrum" alone there is far more diversity than there is within the rest of the human population. As one clinical psychologist told me, "Saying you study autism is like saying you study the world of non-elephant animals."
Special-needs parents do share one thing: the eviscerating cost of our children. It's one of the awful ironies of this unchosen life. Not only do we divorce more frequently [not accurate -- ed.] and suffer from more mental health problems, but we pay dearly for the privilege.
Well before Finn hits 22, a wave of disabled children will "age out," requiring massive amounts of state assistance. So just as baby boomers start putting unprecedented stress on government benefits, a slightly smaller but still significant population of disabled people will be in need of government help too.
"People assume the state will be there to help with their child," [financial planner John] Nadworny says, "but that's a really risky bet."

The final frontier for us (and, I suspect, many other families like ours) is to create a will and trust for our children. This is not straightforward. There are specialized vehicles that provide for the care of a kid like Finn without endangering his government benefits. There is also, critically, something called a letter of intent, which spells out the terms of care for a person who can't express those needs himself. But someone needs to serve as trustee; another person needs to serve as guardian.
How do you ask even a close family member to shoulder what we have taken on? There is, in our case, no obvious contender and no obvious solution.