2. The nightmare begins 14 May, 2025 - 43 days

This will be a ramble, but please read it. Spoiler alert: I'm mad as hell. If you support all the cuts to Medicaid/Medicare, you especially need to read this. And if you still think those cuts are a good thing, leave my page and my life. With haste.

the dude's decline in mobility has caused considerable upset for him and is also a safety issue.

His Waiver program can provide home modifications to support mobility needs and many years ago, we utilized those services so he could navigate his home and take showers and use the restroom. His doctor wrote a letter outlining his needs. We got 2 quotes, his case manager approved it, and 3 weeks later, his life was changed.

His continued mobility issues and our recent move leave us needing modifications again.

Due to the continued cuts over the last few years and levels of bureaucracy put in by the GOP led NC legislature, the process is now beyond onerous. I had no idea just how insanely bad they'd made this process until we asked for new modifications in March of this year. And yes, I can cite the legislation they sponsored and passed that did this and yes it was 100% put up by and passed by the GOP.

2 quotes are required, same as before, and that's reasonable. What isn't reasonable is that only FIVE contractors for the entire state are approved to submit quotes and do the work and it took 9 weeks just to get 2 quotes due to their scheduling.

We finally have those, his case manager's supervisor finally approved it going to review (*only* took her 3 weeks) and now the request is going to utilization management for review. Ok, reasonable. What's NOT reasonable is they give themselves FOURTEEN WEEKS to review it. And, I'm told, most are not being approved now and the appeals process can take up to a year.

So that'll put the dude at 25 weeks waiting just to (hopefully) get these modifications approved. Then, because there are only 5 approved contractors, it could be 3 to 6 months before one has time in their schedule. So it could take close to ONE YEAR to get this done.

Fun side fact: tariffs and materials shortages could impact this all substantially.

Modifications needed as follows:

Ramp to get in the house because he can no longer safely do steps

Widen bathroom door because he can't get through the door with his walker

Walk in shower because he cannot lift leg over a tub to get in and once in, cannot stand

Accessible toilet so he can actually use the toilet AND clean himself appropriately

That's it.

Things we've tried (and failed at miserably):

Bedside commode (at our expense) - doesn't work well when he falls trying to get on it, which is every single time

Transfer bench for the tub (at our expense) - due to the configuration of the bathroom, it's a deathtrap. He can't get turned around properly to sit down and has fallen every time we've tried. Two of those times he fell on top of me.

Nothing we can currently do about the door. As such, he now crawls from the bathroom door to get to the toilet. Problem there is he is unable to get back up independently. I've herniated 2 discs in the last 8 days helping him up from the floor. And before you come for me, yes, I know the proper way to lift. My back doesn't care.

Also? He's now wearing incontinence underwear, which we pay for out of pocket, and which he absolutely hates. This is because 9 times out of 10, with the crawling and maneuvering, he can't get to the toilet fast enough. No one should ever have to see someone they love lying helplessly in their own waste. No one should ever have to then hodgepodge cleaning that person in the aftermath because they can't safely shower. Being disabled should NEVER require losing your dignity, it should NEVER cause you to risk your safety to do the basic things, and it should NEVER require taking half a year or longer to receive help.

So, I decided today, after watching the dude struggle for 25 minutes in the bathroom floor, that every time he falls and can't get up, I'll call 911. Because that's a great way to tie up services when all he needs is the damn modifications done.

I was also told, matter of factly, this funding may not exist by the time any of this gets approved if the Administration in DC gets their way with their proposed funding cuts. You, yes YOU, could become disabled at any point in your life and need these and other services. Whatcha gonna do when they don't exist because people who have never lived this and think disabled people are worthless did away with it all?

Are we great yet?