Paying for Finn: A special-needs child (pg. 4)

@crowdsourcing April 22, 2013: 9:11 AM ET

Months pass after our first set of meetings with Nadworny. We make some changes right away. We link all our accounts to the online budgeting tool, which proves a harsh taskmaster.

Suddenly every expenditure is flashed across my screen when I open my computer in the morning. When we exceed our monthly budget, Mint tells us, in garish red reminders. It's worked: I've quit chewing Nicorette. I haven't bought a fancy dress shirt in some time. I make a mean smoked bluefish paté that I bring into the office to spread on a bagel.

Of course, these are nips and tucks. Caring for a special-needs child requires a mix of government benefits and personal expenditures. We've overcome our congenital phobia toward paperwork and managed to get Finn signed up for a "personal care assistant," to be paid for through CommonHealth, part of the comprehensive health care legislation passed by then-governor Mitt Romney.

Are we eligible for other benefits? Good question: Part of the struggle families like ours face is the detective work it takes to even discover the benefits hidden, like Easter eggs, in the nooks and crannies of state and federal policies.

We know the CommonHealth money will provide us with $9,555 to retain Gee part-time to help Finn eat, bathe, dress, and "toilet," the euphemism his teachers use to mean changing a 5-year-old's diapers. It is a testament to Gee's heart that she has begun taking Finn, gratis, for a few hours each weekend to give us a spell from his infrequent but violent tantrums.

We're on track to spend $144,000 this year, and thanks to a new book contract I just signed, we should be able to put at least $50,000 into savings.

Now we have to figure out where to put it. The first step, Nadworny advises, is to max out my contributions to the university's retirement plan. It will contribute $2 for every $1 of mine, up to 10%.

We'll roll over the New York State pension Alysia found into an IRA, and maximize her contribution -- currently $5,500. Finally, we'll reduce our tax exposure by starting a simplified employee pension, or SEP, IRA. Originally created to give small-business owners a way to set up pension plans for their employees, it also allows people like us, who make most of their money as independent contractors, to create alternative vehicles for retirement.

To remove any possible asset from Finn's name, and because he's unlikely to go to college, we'll shift the $4,800 in his 529 plan into Annabel's account, bringing it to $16,000. And, finally, we've begun the process of applying for life insurance policies. I've recently taken out a $500,000 term life insurance policy to supplement the policy offered by Northeastern. Following Nadworny's advice, Alysia is applying for an additional $500,000 policy for herself.

And that brings us back to Finn. One byproduct of our economies is that we've freed up money that allows us to increase our spending on him. Previously he received all his therapies through the school district. In the fall we entered him in a highly regarded occupational-therapy program. We're spending $850 a month and consider it worth every cent.

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.

So there are challenges. We're used to those. "Don't look for sudden progress," a well-meaning neurologist once told us. "Autistic kids get better. But it happens very, very slowly." Maybe it's the new therapy, but lately it seems that Finn is experiencing what a less weary parent might call a breakthrough. One day this spring he hugged Annabel, out of the blue. Alysia and I exchanged looks of awe, then joined in. Just like any other family.

Related: Paying for special needs

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