Vent post about medicaid
Wtf.
So for most of the last year or two, I've been having issues with my insurance refusing to cover things related to my wheelchair. I have been dealing with pressure sores and having to pay out of pocket for repairs, new seat cushion and tires among other things due to this. I found out that while they originally paid for my wheelchair back in 2021, they revoked that payment two years later?! Which according to the DME company is not only completely legal for them to do but it's not uncommon.
So only in the last couple months after years of fighting, have we been able to pinpoint that their refusal to pay for things related to my chair is due to mainly 2 factors. They didn't technically pay for my chair in their view, and the diagnosis codes my doctor is using are apparently considered below the line. According to the insurance rep I just spoke with, that means that either my dr needs to use a different diagnosis code that's above the line, or if that's not possible, I have to take it to the hearing level to get my chair.
It's so wrong, 9-12+ pages of medical evidence with every order, multiple years of PT and other specialist evals, my drs orders, isn't enough for them to pay. I'm basically bedbound without my chair most days, and I'm being told that my only recourse could be going to court with the state to prove I need it?! This is so wrong, and it's so messed up how casually I was told this info, like it's just so completely normal to them. All because there's only 2 specialists in the entire state that can "officially" diagnose the hypermobile ehlers-danlos syndrome I live with, that my drs have been treating me for and all agree that's what it is, but none of the ones who could are willing to put that down officially because "they just don't have confidence in their ability to diagnose that". So I get to sit on waitlists for the 2 who can, one an hour away with a 5+ year waitlist, and one 2 and a half hours away who should really be retired but can't because he has nobody to replace him, with a waitlist that I still don't know how long it will be.
I have multiple family members who have somehow managed to get diagnosed by other providers without this bs, because I count as family history of EDS for them. And I'm so grateful that I've been able to help family access care. But while it's been identified and treated in me for over half a decade, I still can't access certain things through insurance that I need, and even when insurance does cover things, I often wait months before they send the approval, then wait even more months for the provider to have an appointment, then back to the insurance for the next step. How am I supposed to live like this?!
How do I even begin to advocate for change on this, who can I talk to that would even have any power to change this? I hate how difficult my country makes it to exist as a poor disabled person. I just want to be able to live a simple life with my basic necessities covered, and know that when my medical team says I need something, I won't have to wait literal years to get that care. But that's apparently too much to ask for.