I am writing in response to the article, “Medical Bills Bankrupt Families of Mentally Ill Children,” which is a topic poignant to my family at this time. For the past few weeks, I’ve been checking our mailbox every day, making the walk with a nervous lump in my throat, and returning — hands full of junk mail and heart fuller with worry over a bill that should have been here by now.
Our son, who is 12, has been in a residential treatment program 1,200 miles from home for six weeks now, and we await the bill that weighs on us like a 10-ton question mark. He is receiving therapy to treat complex symptoms related to Tourette Syndrome and Obsessive Compulsive Disorder.
To our best estimation, the bills we will have received by the time he is discharged some time this spring will cost us anywhere between $15,000 and $400,000 — a big range, but every bit hinging upon whether our insurance company deems this intensive, residential program “medically necessary.”
The hospital required a deposit of $30,000 at the time of admission that would cover our son’s first 30 days of treatment, and we have received notes from our insurance company informing us they’ve approved his first three days, and then five days of treatment — good news, yet little comfort when our son will likely require a 4-plus-month stay at this facility.
Our life prior to his admission is difficult to describe, except to say that we were at a level of nonfunctioning unfathomable to most. Our son couldn’t tolerate hearing his name and would collapse in pain if he heard it uttered to or in reference to him.
Over the past two years, he grew intolerant as well of any pronouns referring to him (you, he, him, etc). Any initiation of conversation whatsoever would trigger a tantrum intensely severe and often including rage-filled, self-injurious behaviors such as punching walls, hitting his head off the counter and lying on the pavement and scraping across on his bare back.
Because of the nature of his OCD, a “wrong” answer from us (this meant a “no” when he needed to hear a “yes” or vice versa) or even a fleeting glance at him when he “didn’t want to be looked at,” could set him into an exhausting loop of ritualistic repetitions.
This happened during a recent holiday when he unpacked our car loaded to the roof with food items, gifts from relatives, etc., then packed it again, unpacked it once more, re-packed it, and when an hour later, I locked him out of the garage to keep him from continuing, cried himself to sleep, as he did so often.
And what I have described here is such a small portion of his symptoms, characterized by a large number of exhausting motor, verbal and mental tics.
In the years leading up to our decision to admit him to a psychiatric hospital, we had seen six different doctors /therapists, tried enough medications and supplements in varying amounts and combinations to fill a small dump truck, and because of some of their more serious side effects, my son, in his 12 short years, had more blood tests and EKGs than most people in a lifetime.
In a time of desperation, we drove him nearly two hours for almost a year to see a psychologist, a renowned expert in TS, and we paid thousands for the initial visit and hundreds more for each visit thereafter. After a year, we’d spent $15,000 and were no closer to any relief for our son, who continued to suffer profoundly.
This wasn’t because of lack of effort or expertise of our doctors, but the reality that TS is so difficult to treat and research too scarce. In addition to those costs, we were paying a therapist close to $200 (only 50 percent covered by our insurance) each week to work with our son who, we eventually realized, was too sick to respond to outpatient therapies; nevertheless, two years and thousands of dollars later, my son’s symptoms were worse than ever.
We have no idea what looms ahead, should our insurance company decide that our son’s residential treatment program is not “medically necessary.” When I go to our mailbox one day to discover we owe more than our house costs for our son’s current hospital stay, we’ll then begin the process of triaging payment of bills, and see where this takes us.
We can only hope, regardless of whether we end this year in danger of financial ruin or just in debt that will hang over us for an unknown number of years, that our son comes home to us healthy and able to function more ably in this world that, so far, has given him more than anyone’s share of grief and heartache.