Let me first say this… 

Waivers are a good thing. They allow people to stay in their homes, receive care in their communities, and live with a level of independence that wouldn’t otherwise be possible. If you think you or your loved one qualifies, you should absolutely apply. 

AND, you also deserve to know what comes with it.

Not just the benefits—but the realities. Because there are parts of this system that can catch people off guard if they don’t know what to expect. Going into it with your eyes wide open matters.  Everything I’m sharing with you are situations I didn’t learn until after the fact, after we had to hurdle a roadblock, after the headache (or during). 

This Is Where It Starts to Get Real

This is one of the more recent changes… 

After years of things working one way, a new rule was put in place: attendants now have 30 days from the date of service to submit their shifts. If they don’t, those hours can be denied—and not paid. 

And a lot of people didn’t even know it had changed. 

Until they paid for it.  Until they didn’t get paid.

Right after the 30-day rule went into effect, I watched people lose thousands of dollars in pay they had already earned. Not because they didn’t do the job. Because they were a few days late. 

Make this make sense.

The Fair Labor Standards Act is built on a pretty simple idea: if you work, you get paid. The Department of Labor says if someone is “suffered or permitted” to work, that time counts.

In plain English? If you showed up and did the job, that time is supposed to be paid.

Can there be rules? Yes. Deadlines? Yes. Consequences for not following them? Yes.

But the work was still done. The care was still provided. The person still showed up. And yet—the pay can be denied.

If someone shows up, does the work, provides the care, and doesn’t get paid because of a deadline—that’s not accountability.

That’s a system taking labor it has no intention of paying for.

Back up and read that again.

When something like that happens, the response you’ll often hear is, “Just contact them.” “Just appeal it.” As if the person responsible has endless time and capacity to chase down a system, make calls, file appeals, and follow up over and over again. As if that’s a small ask. As if the same person already managing care, appointments, daily challenges, and everything else in their life can just add that to the list. 

This Is Where It Starts to Fall Apart

That’s the gap I’m talking about. The one between how this is supposed to work and how it actually plays out. 

You can understand a system on paper all day long. You can follow the rules, check the boxes, and do everything the way it’s supposed to be done. But that’s not where this gets decided. It gets decided in real life, and real life doesn’t run on perfect timing. 

This is what it starts to look like. It looks like someone doing everything they’re supposed to do until something small goes wrong. The app glitches. There’s no service. Something doesn’t submit correctly. Or it’s not even the system—it’s life. A bad day. A health issue. An appointment that throws everything off. A delay in approving a timesheet because the person receiving care is dealing with something bigger than paperwork. 

And then it turns into something bigger. Because now it’s not just a small issue—it’s a worker who doesn’t get paid when they expected to. And now that worker has to decide if they can afford to stay. If they can’t, they leave. Not because they don’t care and not because they don’t want to be there, but because they can’t take the risk. 

And then the question becomes: now what? Who steps in? How long does it take? What happens in the meantime? Because care doesn’t pause while the system gets sorted out. 

This is the part you don’t see. You don’t see the waiting, the scrambling, or the quiet stress of knowing that something small can turn into something big. And it adds up. It’s not one big failure—it’s a series of small ones. A glitch here, a delay there, a moment where life doesn’t line up perfectly. Over time, that turns into pressure, into uncertainty, into a system that starts to feel like something you have to manage just to keep your life steady. 

This isn’t just how it plays out–it’s also how it’s presented. I’ve seen that firsthand.

I’ve Seen This Up Close

A few years ago, invitations were sent out to an “educational” presentation on the new policies regarding Electronic Visit Verification (EVV). The meeting was at a library, and when I walked in, the room told the story before anyone even spoke. It was mostly elderly individuals, people in wheelchairs, people who were very clearly living with disabilities—people this system is supposed to support. 

We were there to be “educated,” but that’s not what it felt like. The first speaker gave a quick overview of what EVV is and how it came to be, tying it back to the 21st Century Cures Act signed into law in December 2016. And then the meeting took a turn. 

Another speaker stepped in, and it became very clear why we were really there. This wasn’t about helping people understand a system they were about to be required to use. This was about fraud. We were given one story—one example of a family—about a case of fraud, and it was held up like it explained everything, like it justified everything. Allegedly, this family had defrauded the system for six years for thousands of dollars.

That’s when I started to realize there was a lot more going on here than what was being presented. And here’s what didn’t sit right with me then—and still doesn’t. For that family to have allegedly gotten away with that for six years, that’s not just on them. That’s a system failure. There are layers in place, multiple points where something like that should have been caught. If it went on that long, then something broke.

Everyone dropped the ball. 

And then came the part that stuck with me. We were told, point blank, that they had our email addresses from when we registered and that we couldn’t claim we didn’t know about this now. We couldn’t claim ignorance if we were noncompliant. Finger wagging and all. Literally.  He held his hand up, pointed at the audience, and wagged his finger at us as he said it.

Let’s Call It What It Is

This is where it shifts. I said this earlier, but it hits differently when you see it up close. What’s called “consumer-directed” is something else entirely. Because when the system dictates the timing, the process, the approval, and the structure, the consumer has very little control over it anymore. 

You can understand a system on paper all day long, but until you see what it looks like in someone’s actual life, you don’t really understand it. 

This is what that looks like. 

I want to hear from you. If you’ve lived this—on any side of it—what has it looked like for you? What worked? What didn’t? What do people need to understand that they don’t? You can email me at miss.wva279@gmail.com –anything you share will remain anonymous.

The more this is talked about in real terms, the harder it is to ignore. 

If this shifted your perspective—or if you think it might help someone else understand this a little better—share it.