"Medical…medical…medical." So went the refrain as I categorized transactions from my checking and credit card accounts in preparation for the tax man this week. Prescription drugs (medical); doctor's visits (medical); premiums (medical); copayments (medical). A family member once asked, apropos of Evan, "How are you managing?” and while I thought he meant, "How are you managing emotionally?" he went on to add, "Have you gone broke yet over this kid?"
The bills from Evan's hospital stay used to shock me with their astronomical amounts: during that time, the kid cost thousands and thousands of dollars a day, and as those days added up to months, the amounts became absurd. In toto, Evan was a million dollar baby, and I used to joke that I couldn't bring myself to get angry with him. "He was too expensive," I'd say. "How can you get mad at a kid who cost a million dollars?"
Even my accountant, that first winter Evan came home, had his own bit of financial editorializing about our new lives as the parents of a child with disabilities. First, he took a look at Evan in his car seat, the oxygen tank in the basket below and the canula taped to his face. "That's gotta be rough," he said. When I told him Evan had been a twin, and that his sister had died, Jim rubbed his hands together and announced, "Hey, look at it this way: there's another deduction. Of course you need a social security number." There came a pause. "Did I really just say that? God, I'm sorry."
"No, it's okay," I said. To this day, when I remind Jim of the story, he winces. But for me, the anecdote is emblematic of just how far-reaching money matters can be in the world of special needs. Tax deductions indeed.
From that first appointment with Jim, and in the first months after Evan came home, I quickly learned that money matters would never be far from my mind. I'm the one in our household to handle the finances, and I quickly saw how the services, therapies, bills and co-payments could easily rack up. Despite that extra tax deduction, the meter just kept running on my million dollar baby. To ease the burden, I began to navigate the world of social services, seeking out, like most parents of kids with disabilities, governmental support.
I found that in the state where we live, social services are remarkably generous. There is an entitlement program built into the state budget that assures kids like Evan abundant support in the form of therapy, programs, and even respite services for the family. There is funding for social skills groups and potty training workshops. As he ages, there will be support for Evan's independent living and transportation as well.
This generosity extends to our school district, which covers physical, occupational and speech therapy. Due to his blindness, Evan receives additional federal funding that provides assistive technology and any equipment he might need to access his education. Eventually, this same permanent disability will bring him more federal money in the form of social security and Medicare.
A family member was once surprised to find that there's even someone who foots the bill for my son's formula and diapers. In so many ways we are so very lucky. But the specter of what this child costs, and who will pay for it, is never far from my mind, at tax time and throughout the year. A parent can envision a typical child's future as one that includes financial independence; not so with a child who has permanent, lifelong disabilities.
The statistics for adults with disabilities living in poverty are staggering. I wonder how Evan will manage to navigate this city, with its terrible public transportation, and if we'll be able to afford a caregiver to take him places, cook his meals, help him with errands. By that time, we'll be living on our own retirement income, or what there is of it. Will there be anything left over for Evan?
Last summer, our family went jobless for several months. The strain of unemployment was nothing compared to the worries about health insurance. A kid like Evan can't go without, but try finding an individual plan that covers him. In our state, Evan qualifies for a safety net medical plan—one we are very lucky to have, but one that also doesn't cover certain medications or certain doctors. "Do you take Medi-Cal?" is a question I must ask frequently, and "Medi-Cal doesn't cover it," is an answer I often receive.
For all of my own worries, I also know we have it so much better than many other families, those who live in states where there are no supports, or very few. I once met a mother from Utah who couldn't believe the help we received for Evan. Her services were more or less nonexistent by comparison. I also have friends who pay out of their own pocket for additional supports that go beyond what their school districts or the state is willing to fund. A friend of mine spent thousands of dollars last summer on tutoring for her son, who has autism. When I heard the amounts, I was stunned. "How did you afford it?" I asked. "Credit card debt is a part of our lives," she answered.
When Evan was first born, my father offered to have us bequeath our assets to him in case the medical bills threatened to bankrupt us. That was my first glimpse into how serious the money matters might be. Years later, after learning to play the system with the best of them, there is the simple fact of how sobering it is to even think about my child this way—as a bundle of financial responsibilities and looming bills to pay. Although the reality is undeniable, I would rather not have to put a price tag on my son's past, present, or future.