Disabled Medical Care

As in medical care that is disabled, as opposed to medical care *for* people with disabilities.

Boo got sick on Wednesday. OK, stomach flu think I. No fever, didn't look sick, was his usual wickedly funny self, just barfed from time to time. Was fine Thurs. Sick again Friday, but more so. Took him into pediatrician (who has agreed to follow him until Boo marries or doc retires). Lab work was fine across the board but doc was concerned about degree of stomach bloat combined w/ vomiting. Was thinking obstruction or intussusception (my new medical term for the month). Offered to give me script for x-ray of abdomen if symptoms continued, but I was in denial and had convinced myself that this would pass in another 12-24 hours. It didn't, of course, so Sat afternoon I take him in to local ER.

Now, we live in a fringe 'burb of Chicago - certainly not out in the sticks, but in a very blue collar area that is sprinkled with enclaves of abject poverty. Local ER is perfectly capable of dealing w/ drive bys and ODs. More complex medical issues seem to freak them out. When Boo was seizing on a regular basis, ER would stablize, usually w/ my tutoring ("yes, Dr. Smith, that nystagmus means he's still seizing - just because his limbs are still doesn't mean we're done - hit him again with another dose of Ativan" or "no, Dr. Smith, I really don't think we need to do an MRI to rule out a brain tumor (give me a break)... my son has CP, i.e. brain injury, meaning he's more prone to seizures (and if you're thinking brain tumor because of a seizure, you're going to completely flip out when you see his incredibly abnormal MRI, and I just can't deal w/ you right now)"). On the thankfully rare occasions when he kept on seizing, or when there was an identifiable medical issue underlying the seizure, he was transported up to the big city. The single time Boo actually was admitted to local hospital only occurred because I signed in blood, agreeing to stay in hosp with him 24/7, which I do anyway, but nursing staff was freaked out at prospect of having to take care of him. Color me confused. But I digress, kinda....

So, we're in ER, get the abdominal x-ray, and I'm informed he has an obstruction. ER doc was quite definite. Now, one of the reasons I respect the pediatrician is because he is perfectly willing to pass the medical buck if he's not comfortable taking care of something. Much rather deal w/ that than some know-it-all who knows nothing, you know? But... intestinal obstruction? I don't think this is rocket science. I don't know, but you kinda have to wonder about a hospital that is not capable of taking care of a little old obstruction in a person with CP. Does CP really confound the issue that much? Long story short, sparing the details of Boo's GI distress, and to really get to the meat of my rambling, pediatrician said transfer. City hospital said send w/ NG tube in. Boo was apparently roughed up a bit by Nurse Ratchet trying to get an NG tube down in local ER (thank *God* I had gone home to get g-tube adapters). I had insisted that he be dosed w/ Ativan before the procedure, then left to get supplies, leaving hubby in charge. Ratchet apparently was amazingly inept at getting the tube (adult sized, not pediatric) down and when hubby objected, Ratchet had the nerve to tell him that Boo wouldn't remember anything anyway because of the Ativan. Ratchet has no idea how lucky she was I wasn't there. Boo was transported to the city, sans NG tube, where it was determined there was no indication on x-ray for obstruction or intussusception, pediatric NG tube was successfully placed (for about 1.5 seconds before he threw it up again, but at least it made it to the stomach this time), and he was very well cared for by professionals who were not freaked out by his CP.

Now, my point here (there really is one) is what is the *deal*?? Boo is not medically fragile. He has CP. It's a done deal. Not contagious, not progressive, really not horribly relevant in my nonmedical opinion when it comes to dealing w/ something that I bet a lot of folks without CP get. Why do we have to transfer out to major teaching hospitals for care? And it's not just for acute stuff.... try and find a doctor willing to deal with routine medical care for a person with CP (ok, really impressively significant CP, but CP nonetheless).

Case in point: Boo is now 18. I know that city hospital is not going to accept him much longer because it's Children's Hospital. They don't treat adults. I'm going to be very lucky to get his simply fantabulous, genius, best neurologist in the world to continue to see him for much longer. Knowing this "transition" is looming like a big black cloud, I thought I would test the waters of adult medical care with a less critical specialty - orthopedics. Just needed a new script for orthotics. No surgery, no new issues, just maintenance stuff. Now, while I am occasionally prone to exaggeration (shocking, I know), I am not kidding you when I say that I called *six* practices in our general vicinity, including the big ortho practice affiliated with local hosp. Much to my shock and horror, not a single solitary one would see him. No joke, the most common response was "Oh, we don't see patients like that". Like ... what? Patients who need your care? Patients who need orthotics? I was stunned that they pick and choose... or in my raving hypersensitive-to-discrimination mindset, that they *discriminate* against patients who have disabilities? C'mon, give me a break. My son cannot possibly be harder to care for than the woman who has had a quadruple bypass with COPD, arthritis, and peripheral vascular disease who just broke her hip, and possibly has a good dose of dementia developing to top it all off. You can bet your last dime Dr. I-don't-treat-patients-like-that has a whole crop of incredibly complex, medically fragile people he treats, but ... he won't treat a *healthy* 18-year-old who needs a new set of orthotics?

I will say, being the pain in the ass that I am, I did find a willing orthopedist in the same area code finally to not only see him, but who treats him like a person, not a potted plant. The man is gold, and I tell him so every time we see him.

So... is it just accepted practice that folks with disabilities *must* be treated in teaching hospitals, regardless of age, regardless of home community, regardless of treatment needed? Is this an extension of the policy of segregation and exclusion that exists in the educational system (in this state much more so than the other 2 we've lived in)? Do we have little clusters of "handicapped" communities around teaching hospitals so we don't have to spend 2 hours on the Damn Dan Ryan trying to reach medical care? Has Boo lost yet more choice in terms of where he can live because it must be dictated by whether or not a doctor will be willing to treat him? And where the hell did doctors get the right to be "willing" to treat a patient??

The obvious counter argument, one I grudgingly acknowledge and have to deal with, is do we really want an unwilling doc involved in his care? Of course not. First and foremost is quality of care, appropriate care, and for Boo to be treated with respect and dignity. If I have to drive the DDR to get there, so be it. But... I don't understand why supposed professionals are so completely freaked out by a little CP.

Hubby thinks my perception is screwed up, that I somehow don't see Boo as others do (and thank heavens for that!). Boo is Boo. In my mind, he doesn't have "issues". He's got CP, a g-tube, sluggish bowels, fused toe joints, a wicked sense of humor, a smile that illuminates the world, and occasional illnesses, just like the rest of the world. He really *isn't* complicated. He's prone to seizures and dehydration but, again, we're not talking rocket science here. Some folks have asthma and seizures, or dementia and heart disease and reflux. What's the difference?

I had started writing a solution (my version anyway) to the "Ashley treatment" but it's turned into a monster and I just haven't had the emotional stamina (yet) to slog thru to the end, but my core belief about the cause of the "Ashley treatment" and the vast majority of the challenges that are associated with living with a disability is this: By segregating children with disabilities into little "self-contained" classrooms or, if you live in the Land of Lincoln where IDEA is a suggestion and OCR wouldn't know discrimination if it plopped down in their office, nice "self-contained" campuses where the only nondisabled folks are the teachers, we are continuing to perpetuate misunderstanding, fear, and intolerance of differences. Little Johnny never sees a kid w/ a disability growing up because "those kids" don't go to school with him. He doesn't see them in the community because the community is inaccessble, both physically and emotionally (if you've ever had to suffer through the "stares", you know what I mean). His pediatrician doesn't treat "those kids", nor does his dentist. I gotta tell you, Johnny has probably rarely seen Boo in the grocery store because it's a bitch trying to finagle the wheelchair and the shopping cart around the corners, and athetoid movements make for interesting results w/ all those lovely displays that are just too damn close together. Johnny goes on to college, med school, residency, and finally is in a practice that doesn't treat "those kinds of patients". It's a vicious cycle because Johnny's kids are going to lather, rinse, and repeat.

The 2000 census (and I can't cite the exact figure because I haven't gotten my research crap - as well as the rest of my crap - together yet) said something like 80% (don't quote me yet - someday I'll finish my "Alternatives to Ashley" diatribe, you can quote me then) of Americans will at one time or another in their lives either be disabled or live in a household with a person with a disability. 80%. Mind boggling. Unfortunately, I suspect most of that 80% will be too old and tired to realize how completely screwed up our "communities" are in terms of inclusion and acceptance and... well, really, what do we do with our elders? We segregate and exclude in assisted living, extended care facilities, nursing homes. And it continues over and over and over. But somehow, in terms of accessing medical care, being old with a disability will get you in the door. Being young with a disability just doesn't.

Medical care for folks with disabilities is far more crippling than any medical condition could be.