Tuesday, July 30, 2013

Disabled and Dissed



Okay, I admit my main reason for blogging this right at the moment, is to let off steam. But also somewhere in my adrenaline-screaming, fight-don't-fly, tortured brain, I also know that this is not unusual, that other disabled people get this same sort of treatment daily, as a matter of course, so I'll blog it for anyone who might possibly be labouring under the sad delusion that disabled people get "entitlements." But as I confess below, we do get Special Treatment.

Believe me:

Cure me...

And just watch me:

I would gladly go back to work, get a medical plan, and have this whole situation taken care of without going through the "special" channels for disabled people.

But no, we get special treatment.

My daughter has been waiting four years to get her wisdom teeth removed. They are now severely impacted and causing her so much pain.

Three oral surgeons have agreed that due to the nature of her disability, which makes her highly sensitive to all medications, this must be done in a hospital under the supervision of an anesthesiologist - not the usual office procedure - or she could die - so they have referred us on.

The oral surgery department of UCSF agreed to extraction in hospital, but the health plan which administers MedicAid approval (Partnership, whose partnership appears to be with investors, so their purpose is to serve as a strict gatekeeper declining requests for treatment) declined.

So UCSF explained the medical necessity to them via appropriate paperwork and --- there the whole thing stalls, with Partnership telling me to call UCSF, and UCSF telling me to call Partnership, and neither party returning my calls nor those of a case worker trying to help me.

So, I call the Disability Legal Services Center (DLSC) and they say no, call agency B; they help people with MedicAid problems. Agency B says no, we don't do this, we only help with MediCare, so call Agency C. Agency C says no but refers me to a specific person in the DLSC who called me back just now, and said no. Why? Because she doesn't understand the sensitivity to medications, of people with M.E.

She said, "Our lawyers said no because the wisdom teeth have nothing to do with your daughter's disability." She suggested I should call Agencies D, E and F and ask them. (Incidentaly, every stressful phone call is a huge effort for me, and a day where I must make three business/health-related phone calls is a day where I will not have the energy left to cook a meal.)





So I explained the entire thing AGAIN, to this nice lady from DLSC. This time I included the story of my near-death during an out-patient procedure, the anesthesiologist not having believed me when I explained my sensitivity - how painful it was to return to my body, how I opened my eyes to see the anesthesiologist standing at my feet, face white as a sheet, saying, "You weren't kidding: you really ARE sensitive!" and how the medical team then hustled him away.

She was impressed. I will hand it to her: she got it then.

So can I explain directly to the lawyers, myself, so they will see that this is indeed disability-related? She says, "No, it has to go through me." Ahhh, gatekeepers. So she will ask the one lawyer who isn't on vacation, again, before she herself goes on vacation, and get back to me "either way."

Either way?

They will only say no to helping me, if she explains it wrong again.

But I must wait, meanwhile calling agencies (or Little Cats) D, E and F, to explain it to all of them, and depending on their guidelines, mission, funding, staffing, workload and of course cranial capacity and compassion, probably be told once again to move along.

There are always more and smaller cats, waiting in each successive hat.

So I asked, "Okay, meanwhile, do you think I should call the ACLU?" mainly to raise the specter but actually also because at this point I am damn well going to call them. "Because, you know, the other way this seems to relate to disabilities is because ANY person with ANY disability who was getting this kind of run-around might begin to suspect that it could possibly be a case of discrimination, as disabled people whether quadruple amputees or ME patients are all a class of people who experience discrimination."

She can't say whether the ACLU can help me but says it can't hurt to call.

If only she knew how much it can hurt to call, how much it hurts to make any of these phone calls.

Like I said near the top, can I please just be cured now and my kid as well, and get her wisdom teeth out the old-fashioned, non-disabled way, with none of this special treatment?

Okay, on I go with my day, which promises to be an interesting one.

But as I head out the blog door and into the slog world, let me take this opportunity to link once again this potentially life-saving information for people with M.E. who must undergo dental procedures or any type of surgery. Do make sure your dentist and doctor understand this and keep it in your file, and that any anesthesiologist under whose care you come, understands it as well. And good luck getting your insurance company to accept it, too.

http://jada.ada.org/content/137/4/488.full.pdf

http://www.njcfsa.org/anesthesia/

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