Parents put up with us, I think, because they take the long view.
I’ve written before about how the little nest egg my father bequeathed me got me through the 2008 financial crisis. When those dolorous days came, I was in my 40s, certainly capable of managing my affairs – if not the global financial order – but as it happened, dad’s careful planning and simple care provided the reserve to get me through the toughest times.
He couldn’t have predicted the turmoil of those years, which turned my life upside down, but somehow he knew – they all do. We all understand it eventually: life is dealing curveballs, nay, beanballs, with gusto. Parents don’t care how old we get, or smart or rich – they know we’ll need help, and it’s coming from them.
My friend Pete and his wife Carole had their first child five years ago. For the first few years, everything seemed OK, but around age two, they started to notice things. Shortly, they had a diagnosis for their young son – autism. It froze me to the floor, when I heard, but as for my friends, they never hesitated – immediately, all was action.
They asked all the questions and became experts on autism. What should they expect, they wanted to know: today, next month, in two years, adolescence, young adulthood and beyond. Can he go to school? Will he be able to live alone? Treatment and therapy are widely available, all expensive – life alone is our only quality freebee. They have a little money, my friends, but not enough to go it alone.
Looking over their shoulders, while they studied and learned, I concluded that fabled King Farouk couldn’t go it alone. They applied for aid, state and federal, a simple process, you’d think. Your son is afflicted; here are the reports from skilled specialists; here’s what we need so he can learn and grow; please help, as required by law. Should be easy. You’d think.
I read a sci-fi story ages ago, where some fellow finds himself in Hell – the tale is patterned on the Inferno, if rather glibly. At the sea of fire or lake of boiling blood – some noteworthy feature, I don’t remember – was to be found poor Hammurabi, consigned to the Depths for inventing bureaucracy. His punishment was deliciously ironic, I’m sure, if not worth recalling, but his abode was certainly fitting. It’s only a wonder he wasn’t down deeper.
Alas, nothing was easy for my friends. Requirements were vague and subjectively applied. Not enough documents exist on this earth to satisfy. One time, program admission was denied because the deskbound tormenter was sure my friends had squirreled away money. No evidence was at hand, and certainly no proof; just a suspicion. They’re still working on that case, a year or so on. I wish no one to Hell, but just maybe, perhaps, a brief glimpse would soften certain souls.
This couple I mention – they’re battlers in life and there’s no other way. Still, they’ve learned: the first providers are you. If they want their son to live a full life, reaching his greatest potential, they’ll have to provide it themselves.
The toolbox is full, thankfully, and one particularly workable instrument is called ABLE. Established in 2014 under the Achieving a Better Life Act, ABLE is a third-party trust providing a tax-advantaged savings platform for people with disabilities. The beneficiary owns the account, but other parties can pay into it too: family members, friends, a special needs trust and more. Post-tax dollars fund ABLE and account income is tax free. Some states allow tax deductions for contributions, but no federal equivalent is currently available.
ABLE account funds do not inhibit access to means-tested programs, like Social Security, Medicaid, SNAP and many others. The problem with means-driven benefits is that technically, they require the disabled person to be poor – usually, if you have more than $2,000 in savings, you’re ineligible. Legislators increasingly recognize that life with a major disability is terribly expensive, and the disabled population deserves the same chance for a comfortable, stimulating lifestyle as any citizen. ABLE was created to address the imbalance created by typical regulatory limitations.
ABLE funds can be used to fund qualified disability expenses, as defined by law. Housing costs can be covered, an advantage for individuals with assisted living requirements. Food, transportation and healthcare costs, the latter in particular for services not provided by Medicaid, all qualify. Education costs, job training, personal care assistance and technological support are also covered. Financial services that support the health or quality of life of the disabled individual can also be financed via ABLE accounts.