Monday, October 10, 2005

More Adventures in Disability Land

We were shifted, for scheduling reasons, to new occupational therapist at CNMC's main hospital. Robert and I went down to meet with her for the first time. She began her discussion with us by questioning whether Robert was making any real progress and whether we ought not to simply discontinue therapy. She pointed out that CNMC's policy is to work only with children who make continuous real progress. When I pointed out to her that Robert was making progress through the home stretching program we'd developed, and that his hands and wrists were finally gaining some flexibility, she proceeded by asking him to reach for and grasp her pen. He tried and missed, and tried again, but had some difficulty. She took this as a sign that he was incapable of doing this.

Because I know I have had a hard week and am doing my best to refrain from accusing various medical professionals unjustly of what amount to war crimes, I put a lid on my fury, and was simply terse and demanding and insistent. I explained to her that we had just spent over a year pusuing the baclofen pump option as a treatment for spasticity, had seen that the medication (delivered intrathecally via spinal catheter) worked, but that we were unable to solve some of the mechanics of the pump set up, and were now returning to physical medicine to see what we could pursue there in terms of treatments. My goal is to increase function in his arms and hands as much as possible. I saw the new flexibility in his hands as a sign that we were making progress. I also pointed out to her that progress among the severely disabled is often quite slow, but is progress nonetheless. When Robert's physical therapist started seeing him several years ago, he could barely move his hand an inch or so to knock a toy car down a tube. Now he has, comparatively, a tremendous range of motion.

To spare you all the blow-by-blow, what I basically forced her to admit after 45 minutes of conversation, was that she had no real experience dealing with children who were as severely physically involved as Robert, that, in fact, none of the therapists at CNMC really did. I asked her why the most prominent children's hospital in the area, the one that offered the most comprehensive pediatric services, did not have the capacity to serve children who were severely involved. She said that there was a lot of turn-over in the department, due to the fact that most of the therapists were young women who were starting families, and that the doctors of physical medicine did not really work with the therapists in any meaningful way.

To me, this is outrageous. Physical, occupational, and speech therapies for severely disabled kids should be coordinated with a physiatrist, a neurologist, and the various licensed therapists to combine drug treatments, special equipment, and exercises in such a way that it benefits and improves quality of life. (And if I ran the world, everyone would have a house, a car, and a college education--more on that later). That, apparently, is not going to be the case at CNMC.

Which brings me to Christopher Reeve. I cried when I found out he had died. Nobody did more to bring to the public's attention the fact that neurologic recovery is very slow, but possible. This is what I see in my son. Here's a kid who suffered some sort of severe, unknown neurologic trauma, that left him incapacitated in a matter of days. Over time, with drug therapy, exercise, and special equipment, he has begun to improve. Neurologic recovery is sometimes very rapid, depending on the injury, but is often glacial. But no one has the patience for that--no one with the resources to ensure it.

What broke my heart about Christopher Reeve's death was the news media's reaction. You could almost see them breathe a giant sigh of relief--'he's dead, so he must have been wrong about the ability of the nervous system to recover'--'Christopher Reeve isn't Superman after all'. He died of a complication of disability: an infected pressure wound, or what used to be called bed sores. This had nothing to do with the fact that his nervous system was recovering very slowly. It was something like a cancer victim whose disease goes into remission and is killed in a car accident. Reeve's death seemed to 'prove' to the media that no one can really recover from neurologic impairment--we could go back to the old paradigm that those who are severely disabled deserve our sympathy, but not our encouragement or support in their quest to recover as fully as possible, or even to believe that such recovery is possible.

Which brings me to politics and the hopelessness of this cause. When I posted once in Slate's readers' forum, The Fray, on Robert's disabilities and stem cell research, someone commented that, well, she 'knew some who thought we shouldn't let them [disabled children] live,' but she had never been quite convinced of that. All I could think was, who the hell are you? You're obviously well-educated enough that the articles on Slate are of some interest to you, but you hang around with people who sound like trailer trash.

And then I think, well, maybe that is the secret thought of many people in this country. I do editorial work for a committee that advises Congress on educational issues. They deal with the problems inherent in directing & supporting low-income, disadvantaged students in postsecondary education, financial aid being one of their main concerns. At the moment, the argument they are promulgating for educating the poor is a sound one: it's for the common good, so the public has an interest. That's true--if you fail to educate and, thereby, train for employment, a significant section of the population that cannot afford it, you are creating a significant drain on the public treasury eventually, due to increased crime, increased welfare costs, etc.

But that's the problem with rehabilitating and educating the disabled. There's no constituency for it, other than the parents of the kids, and there's no argument that can be made that it's for the public good. The severely disabled will not contribute to the crime rate, and, even if they can hold a job, they will require a lot of support to live independently and go to work, etc. So what does it matter? The public has to pay one way or another, so why should money be spent on these kids when they're younger? Why should money be taken away from able-bodied kids' education (education is always a zero-sum game)? What's the point of rehabilitating someone who's always going to need financial and rehabilitative support? Quality of life is just not a strong argument when you're making a public policy argument.

I write this as the superintendent of schools in Montgomery County Maryland is, year by year, bit by bit, with the encouragement of the school board and the county executive, systematically dismantling special education services in Montgomery County. The budget this year has been slashed for special education teachers and paraeducators. My son had a special education teacher last year who worked with him every day on reading skills. Now his special education teacher is at school 1.5 days a week. His current aide, who has the personality of a pot roast, has clearly never been trained in special ed techniques or how to engage children who can't speak. She may not even have a college education herself or any background dealing with children. Robert hates her. He'll cooperate with his tutor, with me, with my husband, and with any other number of trained and empathetic professionals, but for his aide--zilch. She keeps writing these demeaning and discouraging notes on his papers about how he refuses to look at the dry erase board to select answers--i.e., that he refuses to cooperate with her. She doesn't seem like a mean person, but Robert can be engaged, and she's not doing it.

Why can the Montgomery County Schools do this, you might ask? Because No Child Left Behind does not apply to disabled kids. It's what the school administrators wanted to protect themselves from being forced to show that they could actually help disabled children learn. And George Bush, the education president, let them do it. Which makes No Child Left Behind more of a joke than it already is. And, frankly, I'm sure that most of the people in my well-educated, mostly liberal neighborhood, would let him do it, too. They're so determined that their child get ahead, I'm sure that, behind closed doors, if it came down to it, they'd admit that if it is a zero sum game, they'd have to say that it's not worth their tax dollars to educate my son if it's going to take away the educational extras for their children. I mean, Robert's never really going to be able to do anything, anyway, right?

I want to live in Sweden. Where people actually seem to have some sense of moral values or public commitment to quality of life for all people. Or am I wrong about Sweden?

1 comment:

Elne said...

Hi, I'm from india, and I have to say, its really fascinating to get an insight into facilities for the severely disabled in america. I'll be the first to admit that people in India are definitely NOT living in the trees, but definitely, I think you have a lot more opportunities to help the disabled over there. That said, its very sad to hear about your troubles with Robert. Hope you find people who are more understanding and who will help robert more.