Literary Mama writing about the many faces of motherhood
Money Matters


"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.

Vicki Forman is the author of This Lovely Life: A Memoir of Premature Motherhood and
teaches creative writing at the University of Southern California. Her work has been nominated for a Pushcart and has appeared in Philosophical Mother, The Santa Monica Review, Writer to Writer and Faultline. She lives in Southern California with her husband and child.

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Brave and candid piece, Vicki. You continue to amaze me with how honest you are. Thank you.
Ah, the finances. I can't tell you what a huge difference mental health parity laws for insurance would make to us and many other parents that I know. Tourette's syndrome, OCD, ADHD, bipolar disorder, sensory integration disorder, you name it - all of these things are manageable with medication and/or therapy. So we go hugely into debt to provide the minimum that allows our kids to function. Therapies and medications for autism (which is related, neurobiologically) is covered in many states, due mostly to parent activism, and because of this I've seen many parents with kids that have issues that may or may not be on the spectrum accept a diagnosis of PDD-NOS or something similar. Which may or may not be appropriate, and does artificially raise the numbers of autism diagnoses. Anyway, having the "right" diagnosis is almost as important as living in the "right" state, when it comes to finances.
I hear ya. xoxo, Amy
All life carries a price tag; with our kids, sadly, they are often reduced to just the numbers. How good of you to write about this aspect of parenting--I've had my share of staggering bills, and I'll admit I could be better at navigating the bureaucratic maze. But what I love best is your resistance to reducing Evan to a price tag (even a high one!). He is priceless.
Oh Vicki, you caught me on the morning after. The morning after sorting through bills. The morning after making yet another list of phone calls to make and papers to fill out. The morning after Nick and I realized how much debt we have compared to assets and we both admitted that neither one of us truly has a handle on our finances. I usually let it all fall on him, being the idealist forgetful poet who doesnt want to sully herself with money and yet he's the pragmatic dyslexic outdoorsman who would rather be chopping wood. Ugh. I hate how much money matters. I hate seeing the million plus price tag on kids like Evan and Elias. But it sure helps to have folks out there who get it. (And in Alaska we do have a great state safety net that covers therapy, diapers, respite--the downside is we have fewer resources than say California so I find myself wanting to bring Elias to therapy programs out of state, that aren't covered, and then run into that awful place where I have to question what we can afford compared to what our son needs....Oh, you got me going this morning Vicki, I told you, you caught me on the morning after.)
Another great piece. On another blog we are currently discussing the ethical dilemma of paying so much to save and go on to care for the extremely premature, when this same money could be spent to save thousands. It's been a difficult debate for me to swallow, and I am certainly touched by the last line of this post. Thank you.
Hi Vicki, Thank you again for your universal perspective! It's so important to have someone articulate the financial fragility families caring for a child with special needs and/or special healthcare needs have... I learned about the fluidity of medical billing when I saw the hospital bill for Quin's open heart surgery - $60,000 - and the insurance company's explanation of benefits, stating that $20,000 would be paid, as agreed in the company's contract with the hospital. I was amazed, and thankful for my husband's employer's insurance which we had to rely on, since I had to cut back my college teaching hours to be able to care for Quin, who had multiple medical issues, and home health nursing on a daily basis. Quin's first hospital visit for a malignant tumor (cancer), which turned into a 12-week stay and included the placement of a trach, was billed at $1 million, and his last stay (at the end of which he died) was billed at $2 million. I have no recollection what the insurance company paid out. Though we had private insurance, I carefully maintained our federal Medicaid waiver so we had a safety net, and also access to our state's Title V program - which provides additional support and medical access for the medically fragile. I did this because I was so confused by the various programs, and I was afraid that we would lose our private insurance for one reason or another, or that they would refuse to provide what Quin needed. (Soon after Quin left the NICU, our first parent-to-parent support match was a couple, each with MBAs, who were, at the time, apartment complex managers. They'd lost their high-powered incomes and were thankful that their son's severe medical and developmental problems recalibrated their focus on life. It deeply scared us. Was this our future too?) With the California budget crisis, and our legislature unclear on what best to do in providing medical care, we are looking at 10% cuts on top of a financially fragile infrastructure. How this plays out will affect California's children's medical safety nets. And yet, yes, families in other states - and other countries - get less. I continue to struggle with the concept that medical care is a product, and that insurance is a means to afford the product. Thanks, always and again, for a thought-provoking article. ciao, Lisa
i wish all states would follow california's lead in this regard. your last statement sums it up so beautifully. i wish the finances didn't enter in at all but they do so much for many, to devastating results.
Excellent post. Should money really be so important in the life of a child with special needs???? I wish that were true.
I found your column via Amy's blog. We, too, are very lucky with the support we get for Lili now. We are only just beginning to understand what a maze of money matters we will be traversing for years to come. Special Needs Trusts...Waiver Funding...more acronyms than I ever wished to know...
New to your blog and loving it. Yes, finances. I'm in NYC and it's a pretty good place for special needs, but just living here kills you. Going through a divorce (mostly over money) which makes finances even more tight. I want to spend eveything I have on my son's therapy, but his dad does not. Thanks for your blog, I find it very helpful.
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