Paying the Bills
It's time to talk about money , and sex. Both very difficult topics for families of young adults on the spectrum. I'm not sure which is more difficult, but maybe it's sex. So I'll start with money, and leave sex until my next column. I can hear Reilly's sigh of relief as I write this!
As we know, it's expensive to have a child with ASD. A recent story on MSN Money  cites an Autism Society estimate that the disorder costs the country $137 billion annually. A lifetime of caring for a person on the spectrum runs to the millions—$3 .2 million according to the society, with behavior and other therapies costing $40,000 to $50,000 per year. A supported residential setting for adults with autism can cost as much as $100,000 per year.
"Even if no new instances of autism occurred starting today, the number of adults who would potentially turn to the human services delivery system for services and/or supports by 2030 will be 500 percent higher than it is today," according to a statement the society provided to MSN Money.
Staggering.We don't hear much about this in the mainstream news. Congress is mired in partisan politics, still arguing the merits of Obamacare and “entitlement” programs, which may be lifesavers for many families and adults with ASD. The costs of the autism explosion have not yet come close to the top of the nation's to-do list, yet they are foremost for families with children making the transition to adulthood.
We sent Reilly to a private special ed high school that cost about $30,000 per year, for four years. We made the commute from Northern Virginia to suburban Maryland because there are no comparable schools on our side of the Potomac River. Some of the students at his school were funded by their Maryland or Washington, D.C. school districts, but our county school system doesn’t do that. We could have kept him in public high school, and it might have been OK. But we were lucky to have the choice.
Postsecondary school options are even more expensive, with tuition at or above $50,000 per year. There are no public university options for our son in Virginia. Community college is more affordable, but not geared to provide the supports that many students on the spectrum need. Financial aid, I suspect, is in short supply.
And we need to look beyond “college” into Reilly’s adult life. Last year, my husband and I started working with a woman who specializes in financial planning  for families with special needs children. One of the first things she suggested was that we apply for Social Security benefits for Reilly, but we couldn’t do that if he had any funds in his name, like his 529 College Savings Plan  and other money set aside in his name for education. Before we can file for SSI, all that money has to be spent. High school and Reilly’s first year at NYIT  have largely taken care of that “problem.”
Supplemental Security Income , if he is eligible, will provide a modest monthly income, but more importantly, healthcare insurance through Medicaid after he turns 25. (Thanks to Obamacare we can keep him on our policy until then.) But even after we file and if he is eligible for benefits, any money that comes into his name in the future can knock him off the benefits, which means we have to look at our own estate planning. Our advisor suggested we set up a special needs trust, which leads to a whole new set of issues: Who should the trustee be? It has to be someone we trust, who will still be alive when we are gone. Certainly that suggests that anyone close to our age is not the right candidate. And what arrangements do we make for a successor trustee if the person we pick can’t do it or isn’t around to manage it? The trust, we are told, has to be set up in such a way that he has no control over it, or it will make him ineligible for SSI, which is the whole point. Who will have his best interests in mind and be willing to spend the time it will take? How can we anticipate now what Reilly might need in 30 or 40 years, after we are gone? Do we fund it now, at some cost to our own retirement, or plan to leave enough in our estate to take care of him at the risk of leaving less for his brother and sister? Do we have to worry about whether the other kids feel they have been unfairly treated? How do we fund it? Insurance? What kind? (We have learned more about “guaranteed” and “whole life” and “first to die” policies than we ever cared to know. And how morbid is discussing a “first to die” policy  with your spouse?) How much does he need, and when will he need it?
We are working our way through these issues now. Our goal is for Reilly, and his brother and sister, to be independent, self-sustaining adults, and we’ll put all the resources we have into that goal. Resources that I fully understand we are lucky to have. These decisions are difficult, but how much more so for families who are not as “lucky” as ours?