Tag: medicaid

Waivers Pt. 7: Why Does This Bother People So Much?

Before anything else, I want to say this clearly. I know there are people working in this system—case managers, service facilitators, providers—who have seen situations where a parent being paid to care for their adult child wasn’t the best setup. Situations where things didn’t work the way they should. 

I’m not speaking to those situations. Those need to be addressed. That’s not what this is about. 

I also want to be equally clear about something else. The purpose of this isn’t to dismiss safeguards, oversight, or legitimate concerns that exist within the system. 

It’s to remove stigma.  

The Question Underneath It All 

There often seems to be an underlying discomfort with the idea of a parent being paid to care for their adult child. That discomfort shows up in different ways. 

Questions about conflict of interest. Questions about fraud. Questions about whether families should be doing this anyway. 

Some of those concerns are fair. 

But they also reveal something deeper about what people assume caregiving is—and who they believe it should count for. 

What Some People Assume 

For some people, there’s an underlying assumption that this care is something extra. Something optional. Something that wouldn’t happen otherwise. The thinking often goes something like this: 

“Well, parents take care of their children.” 

And that’s true–most parents do. But we’re not talking about typical parenting. We’re talking about caregiving that, in many cases, continues long after childhood has ended. We’re talking about adults who may need assistance with bathing, toileting, feeding, supervision, transportation, medication management, communication, mobility, behavioral support, medical appointments, and countless other daily tasks. We’re talking about care that may be required twenty-four hours a day, seven days a week. 

For years. Sometimes for decades. 

Yet there is occasionally an assumption that if a parent is doing that work, it somehow doesn’t count as work because it is being done out of love. 

I’ve never understood that. 

Love doesn’t eliminate labor.  Or responsibility. Or exhaustion. In fact, many of the most demanding things people do in their lives are done because of love. Yet when family caregiving enters the conversation, the presence of love is sometimes used as a reason to diminish the work itself. 

The care exists whether compensation exists or not–the supervision, the responsibility, the sleepless nights, the crisis management, and the advocacy also exist. The only thing being debated is whether society is willing to acknowledge that reality. 

And perhaps that’s the question underneath all of this. 

If the exact same care is considered valuable when performed by a stranger, why does its value suddenly become questionable when performed by the person who knows the individual best? 

The care doesn’t become easier, the needs don’t become smaller, the responsibility doesn’t become lighter… 

The last name simply changes.  

The Person Missing From the Conversation 

Something else strikes me whenever this topic comes up. The conversation often focuses on the parent. 

The parent being paid. 

The parent providing the care. 

The parent documenting hours. 

The parent being monitored. 

The parent being trusted—or not trusted. 

But the person who seems to disappear from the conversation is the individual receiving the services. 

And they should be at the center of it.

After all, the entire purpose of the waiver system is supposed to be improving their quality of life, not making a philosophical statement about family responsibility. The purpose is to support the individual. 

Often, that gets lost. 

If a person receives better care from someone who knows them well, why wouldn’t that matter? If they experience less anxiety because they are surrounded by familiar people, why wouldn’t that matter? If they experience fewer disruptions, fewer transitions, fewer misunderstandings, fewer setbacks, why wouldn’t that matter? If they are more comfortable, more secure, more regulated, more willing to participate in their community, more willing to try new things, and more confident because they have stable support around them, why wouldn’t that matter? 

Those outcomes matter. 

In fact, they’re the whole point.

The goal should never be simply filling a staffing position–it should be creating the best possible outcome for the individual receiving services.

I should probably mention something here–I don’t get paid to care for my daughter. But after decades of caring for her, I have seen firsthand that there is another layer to care that often gets overlooked in these conversations. 

It’s the emotional investment. 

A paid caregiver may genuinely care about the individual they support. Many do. But a parent often carries something more. They carry years of accumulated knowledge, memories, observations, instincts, and experiences that can’t be taught in an orientation or written in a care plan. 

They notice subtle changes. 

They recognize warning signs. 

They know when something feels off, even when they can’t immediately explain why. 

They remember what worked five years ago when a particular challenge came up. 

They know what causes anxiety, what creates comfort, what builds confidence, and what helps the individual feel safe. 

That level of familiarity isn’t simply sentimental. 

It has practical value. 

And when it benefits the individual receiving services, I believe it deserves to be part of the conversation. 

I’ve had 34 years learning my daughter’s communication style and am still learning.  Sometimes it’s just how her eyes look.  How can I teach that to someone?  For instance, when she is getting ready to get sick—vomit—her eyes literally get a different look to them that cannot be described or “taught” to someone.  When that happens, I know I pretty much have to hold her over and head down so she doesn’t aspirate.   

She doesn’t instinctively do that herself. 

When she chomps her teeth a certain way, I know there’s a pain in her somewhere that is going to cause her to grab—something, someone—and I must make sure she’s in a safe space when that happens.

It’s those nuances that literally can mean life or death in certain situations. 

BUT, it’s weird for family members to be providers and there’s a chance of fraudulent activity, so let’s just risk it. (If I’m sounding snarky, it’s because I’m being snarky.) 

 The Situation No One Wants to Sit With 

A parent is willing to provide the care–not reluctantly or out of obligation, but because they genuinely want to do it. They know their child. They understand their needs. They’ve built routines, trust, communication, and familiarity that didn’t happen overnight. 

But they can’t afford it. Wanting to care for someone doesn’t pay the bills. 

So now they’re faced with a decision that isn’t really a choice. They either step away from the workforce to provide the care and absorb the financial consequences, or they step away from providing the care so they can afford to survive financially. 

And if they step away from the care, then what? 

Someone else steps in. 

Someone new. 

Someone who has to learn everything from scratch. 

The routines. 

The triggers. 

The communication styles. 

The preferences. 

The subtle things families often know instinctively after years together. 

And maybe that works. 

But maybe it doesn’t. 

Maybe there’s turnover. 

Maybe there are gaps. 

Maybe consistency becomes uncertain. 

And now the individual—the very person this system is supposed to support—is the one absorbing that instability.  Or worse. 

I’ll also add here–finding providers is next to impossible.  That deserves its own post.

The Part Many People Never See 

There’s another reality that often gets overlooked in these conversations. Some people hear that a family member is a paid caregiver and assume they’re being compensated for every moment of every day. 

That’s not how it works. 

For individuals receiving waiver services, allowable hours are assessed and authorized based on need. Those hours vary from person to person, but they are not unlimited. 

For live-in family caregivers, this creates a reality that many people never stop to consider. 

The caregiving doesn’t stop when the authorized hours run out—it continues. 

The individual still needs assistance. The supervision is still required. The responsibility is still there. The difference is that the compensation stops. A live-in caregiver may provide support twenty-four hours a day while only being authorized payment for a fraction of that time. 

Most workers eventually step away from their responsibilities for the day. 

Live-in family caregivers cannot. 

There is no leaving the job site when the person you support lives under the same roof. There is no commute home from the responsibility because the responsibility is already home. 

The timesheet may end, but the caregiving doesn’t–the individual doesn’t stop needing support because the authorized hours have been exhausted. 

That’s not a complaint–it’s simply reality.  Something that few have stopped to consider.

A Different Question 

The question shouldn’t be “Should a parent be paid?”

The question should be “What arrangement provides the greatest stability, safety, comfort, trust, consistency, and quality of life for the individual receiving services?”

Those are not always the same question. One focuses on the caregiver. The other focuses on the individual.

If we’re forced to choose between the two, I believe the individual should win every time. After all, they’re the reason the system exists in the first place.

____________________________________________

At the end of the day, this conversation shouldn’t center around politics, assumptions, stigma, or even payment. The spotlight belongs on the individual receiving the care. They are the reason any of this exists in the first place. They deserve stability, consistency, continuity of care. They deserve to feel comfortable and safe with the people caring for them, relationships with caregivers who know them—not a revolving door of turnover, uncertainty, delays, setbacks, and constant starting over. 

For many individuals with disabilities, consistency is not a luxury. It is directly tied to emotional well-being, regulation, trust, communication, progress, and quality of life. 

Regression is real. 

Anxiety is real. 

Fear of unfamiliar people is real. 

The exhaustion of constantly adapting to new caregivers is real. 

And the system should never risk the individual suffering—or worse—because of misplaced assumptions, resentment, or discomfort surrounding family caregiving dynamics.

The focus should always remain on what creates the safest, healthiest, most stable environment for the person receiving the care–not what sounds best politically, or what outsiders assume, or what makes people most comfortable philosophically 

The individual should be the motivating force behind every conversation.

People are not interchangeable. Especially not for individuals who rely heavily on familiarity, routine, trust, communication, and emotional safety. For many families, consistency isn’t simply preferred–it’s essential. Sometimes understanding begins the moment we stop looking at care as a system and start looking at the human beings living inside it. 

If this shifted your perspective even a little or helped you better understand the realities many families are navigating, share it. 

 

 

Waivers Pt. 6: Behind the Scenes

Taking the Face Off the Clock 

This is a behind-the-scenes look at consumer-directed waiver services in the Commonwealth of Virginia based on my personal understanding and lived experience—not legal or policy advice.

I want to be clear from the beginning that this isn’t a manual, textbook, or official policy guide. It’s simply my perspective as someone living inside the system.

I’ve realized a lot of people don’t truly understand how these services operate day to day. Truthfully, I didn’t understand all the moving parts either until we became part of them ourselves. Even now, new questions still come up. Like most things connected to government systems, there always seems to be some level of learning, relearning, clarifying, and figuring things out as you go.

Getting Started 

If you believe you or your loved one may qualify for CCC Plus Waiver services, the process typically begins by contacting your local Department of Social Services or local Health Department to request a screening. 

You’ll likely be asked questions about daily care needs and why waiver services are being requested, so it helps to think ahead about the kinds of support that may be needed—things like personal care, supervision, respite, or help remaining safely in the home and community. 

Important points here: 

>You have the right to request a screening.
>You cannot legally be denied the opportunity to be screened. If someone refuses to screen you, ask for that denial in writing.
>You also do not have to already be on Medicaid—or even have submitted a Medicaid application yet—to request the screening itself. 

Now, I’m going to be very candid here. 

The screening process can feel deeply uncomfortable, because the questions are going to place a very bright spotlight on the individual’s needs and limitations. And if you’re a parent requesting a screening for your child, this is not the time to soften things, minimize things, or lead with the victories. 

Most of us spend our lives doing exactly that. We focus on progress. Gains. The good moments. We adapt so completely to our loved one’s needs that many things simply become “normal” to us. But during a screening, the goal is to accurately reflect the level of support that is actually needed day to day. 

So, if your 12-year-old wears pull-ups due to incontinence, but successfully used the toilet twice last month, this is not the time to share that victory. The determining factor is still the incontinence. That doesn’t erase the progress–it just means the need still exists.  And that distinction matters.

Mommas, I know how difficult this is to focus on the “can’ts”, but this is one of those situations where it means approval or denial. And of course, be honest with your answers.

Once Approved… 

Once an individual is approved for a waiver and chooses consumer-directed services, several things happen. 

A service facilitator is chosen. Think of them as the person helping guide and monitor the process. They’re the liaison helping families navigate requirements, paperwork, updates, authorizations, and making sure services are operating as they should. 

Then hours per week are assigned. 

Those hours aren’t random. They’re determined based on the individual’s assessed needs. Some people receive fewer hours. Some receive significantly more.  This is important–those approved hours are the maximum available. They cannot be exceeded. 

The Employer of Record (EOR) 

An Employer of Record (EOR) is appointed.  This is the person responsible for overseeing individual(s) providing the caregiving. They review and approve timesheets, help manage providers, and ensure hours and tasks being submitted match the care being provided. Basically, the provider’s “supervisor” of sorts. 

Sometimes the individual receiving services serves as the EOR (if they’re an adult), sometimes someone else does. It depends on the individual’s ability to manage those responsibilities. 

Choosing Providers  

The consumer or their representative then hires the providers they want. (Different terms for provider are “caregiver” or “attendant.”) 

Those providers must pass background checks and complete enrollment requirements. This isn’t someone simply deciding to pay a family member under the table. 

There are processes. Documentation. Requirements. 

And whether someone has two providers or ten, the approved weekly hours are divided among them. That does not mean the hours must be equally divided. It simply means the total approved hours cannot be exceeded. 

Respite Hours 

There are also respite hours available—currently 480 hours per fiscal year. These are separate from regular provider care hours and are there to provide respite for the primary provider. (Live-in providers do not use respite hours.) 

This part surprises people sometimes–respite can even apply overnight while the individual is asleep. Regular provider hours cannot be used during that time. 

The Day-to-Day Reality 

For non-live-in providers, care hours are documented through the EVV app—Electronic Visit Verification. 

They clock in.
 They clock out.
They document the care tasks performed. 

If someone lives with the individual receiving care, their time can typically be submitted through the online portal instead of clocking in and out through the app. 

At the end of each two-week pay period, submitted hours are reviewed by the EOR. The EOR checks those hours against the care that was actually provided.  If accurate, EOR approves them. Some choose to approve them all at once at the end of the pay period, others may choose to approve them as they come in. Typically the following week, providers receive their pay. 

That’s the basic rhythm of how the system functions. 

The Service Facilitator’s Role 

The service facilitator visits regularly—typically monthly. They’re looking at whether services are going smoothly, whether there have been issues with the app or portal, whether staffing is stable, whether there have been hospital stays, changes in health, or other concerns that affect services. 

And I want to pause here for a second and say this clearly: These facilitators are often carrying enormous caseloads. A lot of what does work in this system works because there are people inside it trying very hard to hold it together. 

The Hospital Rule 

Here’s something many people don’t realize. If the individual receiving services is admitted to the hospital, waiver hours cannot be billed during that stay—even if the provider remains there around the clock continuing to provide care. 

For example, if I were my daughter’s provider and she was admitted to the hospital, I could stay with her 24 hours a day for five straight days (and I have). During that time, I would still be providing care. 

Toileting.
Bathing.
Feeding.
Supervision.
Personal grooming.
Comfort.
Advocacy. 

The care doesn’t stop because the setting changes. 

But those hours cannot be billed because it’s considered double-billing while the hospital is also being paid for care. 

And before someone jumps to conclusions, yes—I understand the reasoning behind that policy. But I also think it’s important for people to understand the reality of what that can look like for families. The assumption is often that once someone enters a hospital, the provider gets to step away. 

And many times, that’s just not true. 

What I Hope People Understand 

Consumer-directed services are often talked about very simplistically online—and sometimes suspiciously or condescendingly, as though families are simply getting paid to care for their loved one and little more.

But when you “remove the face from the clock” and actually look at the inner workings, you see something very different.

You see a layered system filled with responsibilities, oversight, moving parts, deadlines, approvals, documentation, and constant coordination.

It’s not simply “getting paid to care for your family member.” 

It’s managing care inside a structured system while still living real life at the same time. Understanding that matters. The conversation changes when people actually see the inner workings instead of just reacting to the headline version of it. 

Even after understanding the mechanics of how this system works, there’s still another layer underneath it all–the assumptions some people carry about the families using it. 

That’s where I’m going in Part 7. 

 

If this changed your perspective or helped you better understand what families inside this system are actually navigating, share it. Sometimes stigma starts to fade the moment people finally see the full picture. 

 

Waivers Pt. 5: When Real Life Doesn’t Fit the System

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.

 

 

 

Waivers Pt. 4: When EVV Meets Real Life

Now that you understand how EVV is supposed to work, the next question is harder to ignore. 

What happens when real life doesn’t fit neatly into that system? 

Because it doesn’t. And when it doesn’t—someone ends up paying for it. 

Let’s Start With What’s Happening Right Now 

Right now, live-in caregivers don’t have to use the Electronic Visit Verification (EVV) app to clock in and out. But those who do?  They run into a myriad of problems. 

Even though the caregiver (provider) is the one clocking in and out, and when their phone is being tracked, the reality is that the individual receiving services (consumer) is being tracked, too. Because when you track where care happens, when it happens, how long it lasts, and the tasks performed, you are documenting the life of the person receiving that care. And that goes into the “system”…wherever that is. 

All of this information is being recorded.  Daily.  Where they are.  What their routines look like.  What happens in their homes (even in their bathrooms).  Day. After. Day.   Not in a facility.  In someone’s home. 

It’s claimed that location isn’t tracked between clocking in and clocking out, but with a system like this, it’s not unreasonable to question that. 

Real Life Doesn’t Run on a Perfect Timeline 

There’s an assumption built into this system that everything will happen on time, in order, and the way it’s supposed to. But the reality is—the same life that requires this level of care is often the reason things don’t happen on a perfect timeline.  There are 

Appointments
Emergencies
Exhaustion 

Things that don’t wait…  

And when the system doesn’t allow for that, it’s not measuring responsibility; it’s ignoring reality.  

When Reality Doesn’t Fit… There Are Consequences 

If something isn’t submitted correctly, or approved in time, or doesn’t line up the way “the system” expects, it doesn’t just get corrected, it gets delayed, flagged, and yes, denied. 

In some cases, if things aren’t done exactly right, services can be impacted–and that’s where this stops being about paperwork. We’re not talking about a missed deadline at an office job, we’re talking about someone’s care. 

Someone’s ability to stay in their home. 

Someone’s stability. 

The Weight Falls in the Wrong Place 

This is where the whole thing breaks down. A lot of times, the person responsible for approving timesheets is the consumer. They are the employer of records (EOR).  This is the heart of “consumer directed” (CD) services.  An individual qualifies for services (which makes them the “consumer”) & when able, does the hiring, does the firing, does the timesheet approvals. The person who needs care is expected to manage the system that controls that care. 

But when it doesn’t go perfectly—they’re the ones who carry the consequences. 

Let’s flesh this out a bit, shall we? 

The consumer is the one who is already navigating daily challenges, relying on consistent care, managing more than most people realize, who now are expected to manage a system that requires precision, timing, and accuracy. 

With very little room for error.  

If something goes wrong (as it will, because…well…life) it doesn’t stay contained in the system.  It spills over into real life, because providers leave when things become too complicated or uncertain.  Care becomes harder to keep. Routines are disrupted.  And the person at the center of all this—the consumer, the individual receiving services—has to absorb it. 

It can look like 

App glitches
No cell service
Wi-Fi going down at the worst possible time 

Sometimes timesheet approvals can be delayed because the person receiving care is dealing with a health issue, a hospital visit, a bad day where just getting through it takes everything they have.

It can be something as simple as forgetting, being exhausted, or not even realizing something didn’t go through correctly. 

Normal life. 

But the system doesn’t account for normal life. 

Let’s Be Honest About What That Leads To 

When care becomes unreliable, when consumers can’t find or keep providers, when the system becomes harder to navigate than the care itself, there is a very real risk.  The conversation then shifts from “How do we support this person at home?” to “What are the other options?” 

And those “options” don’t always look like independence.  Sometimes the consumer has to go to a facility to receive the necessary care because providers cannot be found in their communities. 

WHICH WAS THE WHOLE POINT OF THE WAIVERS TO BEGIN WITH! 

If interested, I can get into the history of waivers in a later post, and provide an overview of the Americans with Disabilities Act (ADA), Olmstead v. LC, and the Department of Justice’s (DOJ) action against the Commonwealth of Virginia.  (And whatever else I may deem important—those who know me know that I love research and information, and even more, getting that information to others.) 

This Is the Part That Should Make You Pause 

The person receiving services didn’t create the system, doesn’t control it, and isn’t trying to work around it.  They’re trying to live their life. Yet when things don’t line up perfectly, they’re the ones who feel it first. 

Let’s Put It Plainly 

This system doesn’t just track care. 

It can interrupt it. 

It can complicate it. 

And in some cases— 

It can put it at risk. 

Final Thought 

No one is saying there shouldn’t be accountability, but accountability should make care stronger—not more fragile. When a system can’t handle real life, it doesn’t just fail on paper; it fails the person it was meant to support. 

Because at the end of the day, this isn’t just about documentation. 

It’s about a person whose daily life is being recorded—often with little clarity about where that information goes or who has access to it. 

It’s about a system that places responsibility on the person receiving care
to keep everything running exactly right. 

And it’s about what happens when real life doesn’t line up with that expectation. 

We call it consumer-directed care, but when the EVV app is driving the process…it starts to feel more app-directed. 

And that’s a shift worth paying attention to. 

Coming up in Part 5, I move beyond how this works & show you what it looks like to actually live with it—from personal and shared stories.  If you have a story you’d like to share, please email me at miss.wva279@gmail.com You have my word that your story will remain anonymous.

 

If this shifted your perspective—even a little—or if you know someone who needs to understand this side of it, share it with them. Because the more people who see what this looks like in real life, the harder it is to ignore. 

To Those in the Middle of it All

Before I go any further in the Waiver Series, I want to pause for a minute and recognize the people who are in the middle of all of this every single day.

The service facilitators, the case managers, the coordinators—the ones answering the calls, returning the emails, and trying to keep everything moving.

I see how much you’re carrying. The caseloads, the deadlines, the constant changes, the expectations coming from every direction. You’re expected to know the system, explain the system, and fix the system, all while still showing up for the people who rely on you. That’s not small work.

It would be easy to look at everything that’s broken and assume it’s the people. But it’s not. It’s the weight being placed on them.

I’ve seen the extra time you take, the calls you didn’t have to return—but did, and the way you try to make things work, even when the system doesn’t. A lot of what does work… works because of you. Not because the system is perfect, but because you care enough to keep showing up inside it.

So this is just to say thank you. For the work you do, for the patience it takes, and for the way you keep people moving forward—even when it’s not easy.

And this matters too—when I talk about the system, I’m not talking about you. I’m talking about the weight being placed on you and the people you serve.

Because the truth is, a lot of people are still getting what they need today because you’re willing to stand in the middle of it all and keep going.

I see you.

Simple and elegant gold 'Thank You' text on a clean white background, perfect for gratitude cards.

Waivers & Other Confusing Things Pt. 1

I’ve been contacted by quite a few people with questions about disability waivers, so I decided to create a series with information–that’s more easily understood than what you often get elsewhere–on the what/who/why/how of them.  I don’t purport that I know everything.

Hardly.

But I am sharing what I know.  And I’m also sharing my perspective.

What a Medicaid Waiver Really Is—and Why It Matters (Part 1) 

There’s a quiet reality happening in homes across the United States (I’m speaking from Virginia)…and it’s one of the most misunderstood things out there. 

It’s called a waiver program. 

And no—it’s not what people think.  

So… What Is a Waiver? 

A waiver is part of Medicaid that allows individuals with disabilities to receive care in their home and community instead of being placed in an institution. In simple terms, the government is “waiving” the requirement that care has to happen in a facility. 

That shift didn’t come out of nowhere. 

Decisions like Olmstead v. L.C. made it clear: People with disabilities have the right to live in the least restrictive setting possible. 

That means the community—not an institution—whenever it’s appropriate. 

Waiver programs to make that possible.  

Why This Exists (And Why It Matters) 

Before waivers, many individuals with disabilities were placed in institutions by default. Not because it was better. Because it was the system. Waivers changed that by allowing people to stay in their homes, be with their families, have friendships, participate in everyday life, and be part of their communities.

And here’s something people don’t always realize: 

It also costs less. 

Institutional care is significantly more expensive than home and community-based care.  So, this isn’t waste, it’s smarter spending. And it gives people something even more important than savings—it gives them a life that actually feels like living.  

What This Means in Real Life 

This isn’t about convenience; it’s about dignity. It’s about someone being able to sit at their own table, go out to eat, be a part of family life, have friends, experience the world around them…. instead of being removed from it.  

Final Thought for Part 1 

This isn’t a loophole or a handout.  It’s a system designed to save money, but more importantly, it gives people a better life.  And for a lot of families, it’s not just helpful, it’s necessary. 

What Comes Next 

In Part 2, I’m going to break down one of the biggest misconceptions out there—
the idea that parents are somehow “getting paid” in a way that benefits them. Because the reality of that is very different than what people think.  

If this gives you a different perspective, share it.
Because a lot of families are living this… and even more still don’t understand it.