I hope you’ll bear with me today, because there’s a reason I’m about to tell this story.
One thing that sometimes accompanies an extra 21st chromosome is “pronation.” This means that due to low muscle tone, the feet turn out. Julianna has fabulous health and good cognitive functioning but her feet are regularly regarded as the worst the experts have ever seen. She’s been in orthotics—shoe inserts—pretty much since she learned to walk.
Up till now, her inserts have carried a price tag of $1400 per pair. For several years this caused no issues because we have great insurance (because my husband is a public employee). But a year ago, our insurance changed and the provider was no longer in network. So we switched providers and went on faith that we just needed to hold the course. Unfortunately, Julianna has spent the last year with blisters (and now callouses) on the inside of her foot, where her body was fighting the insert because it was no longer what she needed. Even more fun? The insurance denied the claim. After six months of Christian beating them up on the phone, the insurance and the provider got their signals straight, but the upshot was nobody paid for the braces—insurance forced the provider to eat the cost.
This year, we went in wiser. We switched back to the provider we had worked with successfully; we called in the doctor for a meticulously-worded prescription; we talked to the local (taxpayer-funded) organization that funds services for people with special needs; and we made sure they were both in contact with insurance. It turns out Julianna needs a far more restrictive brace—one that goes all the way to her knee. Here’s the cost estimate:
This is the pre-auth form; for now, as you see, the insurance provider seems amenable, but after last year we’re not counting our chickens.
I began this process in mid-June, and yesterday after a 1-hour consult, about a dozen phone calls and two more appointments, finally we brought home Julianna’s new braces.
Which is where Part B comes in: Sensory Issues.
Another thing that frequently goes along with special needs in general is sensory issues. Some kids cannot wear clothes with tags. Some kids need particular fabrics. Some kids cannot deal with being touched; others freak out with loud noises. I have long said Julianna’s only sensory issue is oral defensiveness, but I’m realizing I was wrong: any touch that smacks of medical practice makes her lose her ever-loving mind.
Step one: Casting.
They covered her leg with a sock and then wrapped the leg with the foot held in position, using a fast-setting moist, Ace-type bandage. I intended to document the whole process, but this was the best I got:
…because within 10 seconds of taking this shot, both Christian and I were on duty, me holding her body as still as I could and Christian holding her leg in the proper position so the orthotist could do the casting.
The rubber tube goes over the sock to help space so they can cut the cast off after it’s set. Total time at the orthotist’s office: 1 hour 15 minutes.
We came back 10 days later to pick up the braces. But it’s not that simple. See, there’s also padding inside the brace, and that has to be done when you come to pick them up. The brace does the major corrections, the pads do the minor ones. And when we got there last week, the lead orthotist decided the braces weren’t tall enough. They needed to be remade. Total time: 1 hour 15 minutes, with nothing to show for it.
We came back for a third time yesterday, at the end of the first day of school, to find an emergency procedure had set them behind by several hours. So we arrived at 3:40 p.m. and left at 6. And there was much wailing and shrieking and flailing of locked-up muscles, along with the word “No.” Otherwise she lost all verbal capacity. And this is what we came home with:
And we have to go back on Friday to make sure they’re not rubbing her skin wrong…and possibly again in two weeks for followup.
Let me emphasize a few points:
1. This is a process we will go through every single year for the foreseeable future.
2. We will never have a guarantee that these suckers are going to be covered by insurance.
3. We have to do this, because the alternative is that her legs grow crooked and destroy her knees.
4. This is only one example in the array of issues dealt with by families who have loved ones with special needs.
I tell this epic-long story, breaking all my rules about keeping posts short, because I want people to understand that many of the life philosophies we cling to, philosophies that make a great deal of sense IN THEORY, really only hold up under circumstances where everything—or at least most things—go “right.” Small government and self-reliance are praiseworthy goals, but they must be pursued in tandem with a view of the world that is “pastoral,” to borrow a word from Church circles.
In other words, rules and guidelines are good, but people are more important.
My family is really blessed to have amazing insurance as well as advanced degrees and jobs that allow us to spend the time and mental gymnastics to successfully navigate the shoals of coverage/not coverage.
An awful lot of people don’t have those benefits.
If I have made any point today, I hope it is that special needs are, by definition, extraordinary. Some problems cannot be solved by the private sector; some problems are too big to be borne by individuals without help. It’s not enough to say, “These kids have a right to be born.” If we’re going to support the right to life of children, we also have to support their right to a healthy existence once they’re born. It’s wrong to tell parents they HAVE to have these kids, and then withhold the support needed to raise them. (In another context we’d call that an “unfunded mandate”.)
I post this because I hope it will provide a needed perspective in this election season. This is one of many quiet, nuanced issues that receives zero attention in an atmosphere charged with shrieking about things that, when it comes right down to it, really don’t have much impact on people’s lives. I hope, at a minimum, our story gives people a perspective they never considered before.