Not Getting It

Over the past few months, I have come to the realization that I still don’t get it when it comes to our kids who end up in foster care, especially institutions.  The depth of their fear and the horror of their experience of being essentially left to fend for themselves, even those who do have family, I have apparently glossed over. I think I did that because I saw the unsafe behavior of the kids as leaving us little choice.  I am exploring that in my thinking any which way I can. Forty one years after starting in the field….

On Sunday, came a new way to see this.  One of my kids, now 34, is developmentally delayed. He has an almost-always-fatal brain tumor that has now long stopped growing for some wonderful, and unknown, reason.  Nonetheless, he has had two brain operations in his life.  The first was covered by Medicaid, and the second was covered by Medicare (entitled to based on his work record). But at some point a few years ago, we received a letter that said that his Medicare was being cancelled due to his no longer being disabled.  What??? No longer disabled??? Yet, the doctors, and the MRIs, and I, all thought that the tumor, aka time bomb, was still there.

They measured his disability, it turns out, not by his medical situation, but by his work income from the two part time jobs he’s had for fourteen years now.  He made too much money to qualify no matter the reality of this time bomb in his head. So I had to search for replacement medical coverage. Not really full medical coverage, but enough to cover his neurology surgeon and her hospital.  Other stuff, we’d simply have to pay for out of pocket. 

With the advent of Obamacare (and I once worshipped Ayn Rand) I was very relieved. Finally, real coverage with realistic limits on out-of-pocket expenses for deductible and copays.  What a weight lifted from me, especially with my fears of what happens to him if , as now looks very likely, he outlives me.  I felt safe for the first time since he lost the Medicare.

I thought about that new found feeling of safety, and of not being left alone stranded due to circumstances beyond my – or my son’s – control.  I don’t care what anyone says about Obamacare: there is a rightness to it.  It is empowering and empowerment is always right.  It makes individuals stronger, and that, in turn, makes the societies they are part of also stronger.

And then I read an article in the paper (that I now cannot find.)  I read about a little kid with cancer who’d had to be hospitalized a number of times and operated on.  Her family had good and full insurance coverage.  But the coverage, like almost all of them (?) nowadays, was only for in-network doctors.  In the operating room, unbeknownst to the family, out-of-network doctors got involved.  Their good insurance paid nothing towards those fees. Tens of thousands of dollars in uncovered fees. 

And my feeling of empowerment dissipated instantly. Along with my feeling of my son being safe.

The way we pay for medical care in this country is ridiculous. It is unfair. It is disempowering. It is dangerous.

And I thought to myself, is this how our family-less kids feel all the time? Unsafe to their core? Disempowered always? In danger constantly? No wonder they act the way they do.  In many countries in Africa there is no free schooling. Your education depends on the financial circumstances of your parents and their ability to pay tuition.  I learned that when I was a kid and I remember thinking then that was ridiculous: no kid should be victimized through something he has no control over.  Our job as the adults is to empower our kids; and our job as citizens – adults in society – is to create an empowering society.

Those medical in-network rules are sneaky and two-faced.  I wonder if that’s how the kids whom we dump into foster care – or worse, leave there, experience us.

The thought is beyond embarrassing. It is mortifying.  And horrifying.


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