Tag: advocacy

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 Pt. 3: What is EVV?

There’s a common assumption that individuals are simply receiving services without much accountability. That’s not the case. Care has to be documented—regularly and thoroughly. It’s not a matter of a check being sent to the provider (caregiver) each month. There are already layers of oversight in place to ensure services are being provided.

EVV didn’t introduce accountability—it added another layer to a system that already had it.

What EVV Is, Why It Exists, and How It’s Supposed to Work

Before we go any further, let’s slow this down and talk about what EVV actually is, because once you understand what it was meant to do, you can better see where things start to break down.  While EVV is used with consumer-directed (CD) services (meaning the individual does the hiring/firing of providers) and agency directed, my focus is on CD services.

What Is EVV?

EVV stands for Electronic Visit Verification. It’s a system used to document when services are provided—primarily for home and community-based care. At its core, EVV tracks:

  • Who provided the service
  • Who received the service
  • What service was provided
  • Where it happened
  • When it started and ended

In the simplest terms, it’s meant to say:

This service happened, at this time, in this place.

Where Did It Come From?

EVV was mandated under the 21st Century Cures Act, passed in 2016. The goal was to

  • Reduce fraud
  • Improve accountability
  • Ensure services billed to Medicaid were actually delivered

And on the surface, that makes sense. No one is arguing against documenting care.

What Was Already in Place

This is the part that often gets overlooked. EVV didn’t enter a system with no oversight. There were already multiple layers of accountability, including

  • Monthly visits and contact with case managers or support coordinators
  • Ongoing involvement from service facilitators
  • Routine contact with the insurance or waiver representative
  • Regular reassessments of needs and services
  • Care plans that are reviewed, updated, and monitored

These aren’t casual check-ins. They are structured safeguards designed to ensure

  • services are appropriate
  • needs are being met
  • care is actually being delivered

In other words:

There were already checks and balances in place.

How It’s Supposed to Work

In theory, EVV is simple. A caregiver

  • clocks in at the start of a shift
  • clocks out at the end
  • confirms the services provided

Depending on the system, this may be done through

  • a mobile app
  • a landline call-in system
  • a fixed device in the home

For live-in caregivers, it can look different

  • time may be entered manually through the web portal
  • shifts may be verified in blocks rather than clocked in and out traditionally

Either way, the purpose is the same:

To create a record that services were provided.

When Oversight Becomes Layered

EVV didn’t replace existing oversight. It was added on top of it. So now, instead of

  • human oversight
  • relationship-based accountability
  • periodic, meaningful review

We also have

  • real-time tracking
  • time-based verification
  • system-driven documentation requirements

That shift matters. Because it changes the focus from:

“Is this person receiving the care they need?”

to:

“Does the system show that everything was documented correctly?”

When the Model Doesn’t Match the Reality

EVV was built around the idea of a “visit.” But for live-in care, there is no visit—there’s just life happening, & trying to force that into a start/stop system is where things begin to break down. The very term “visit” implies someone comes and goes. Live-in caregivers don’t.

What EVV Is Not Supposed to Be

EVV is a verification tool. It is not supposed to

  • replace the reality of care being provided
  • override what actually happened
  • act as the sole determinant of whether services “counted”

It’s meant to support documentation—not define reality.

The Human Side of a Digital System

EVV relies on

  • people remembering to clock in and out
  • systems working properly
  • entries being submitted correctly
  • approvals happening on time

In other words, it relies on both people and technology. And neither one is perfect.  Phones die.  Apps glitch.  People forget.  Life happens. Especially in environments where care is happening in real time, in real homes, with real needs taking priority over an app.

What This Looks Like in Real Life

This isn’t happening in an office. It’s happening in kitchens, bedrooms, during medical routines, in the middle of someone’s day.  Caregivers aren’t just “clocking in.”  They’re

  • helping someone get out of bed
  • managing medications
  • preparing meals
  • assisting with personal care
  • making sure someone is safe and supported

And somewhere in the middle of all of that, they’re expected to

  • stop
  • open an app
  • log time correctly
  • make sure everything is recorded exactly as required

Every.
Single.
Time.

When Verification Starts to Shape the Day

EVV requires services to be verified by time and location. In many cases, that location is tied to the individual’s home—or another approved setting. On paper, that’s about confirming where care takes place. But in practice, it can start to influence how the day unfolds.  “We need to be back to clock out.” “Let me clock in before we leave.” “I don’t want to get flagged for this.”

But when a system quietly shapes how someone moves through their day,
it’s worth paying attention.

When Documentation Gets Personal

Care has always required documentation. Under the Health Insurance Portability and Accountability Act (HIPAA), documenting care is a normal part of providing and billing for services.

But EVV and related systems have changed the volume and visibility of that documentation. Caregivers may be required to log assistance with daily activities, toileting needs, bowel & bladder issues, appointments (medical & otherwise) and outings, tasks performed throughout the day.  This isn’t just for continuity of care, but to verify services and ensure payment.

HIPAA is built on the principle of minimum necessary information.

So it’s fair to ask:

How much is truly necessary?

The Bigger Picture

EVV was created with a clear goal–to verify that services are being provided–but it wasn’t introduced into an empty system. It was layered onto one that already had multiple safeguards. And when you add system-driven verification on top of human oversight, the question becomes “are we strengthening accountability or shifting how it’s measured?

A Simple Truth

When the name of the system doesn’t fit the reality of the care, that’s usually a sign the system wasn’t built for everyone it’s being applied to.

Read that again.

What Comes Next

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.

In Part 4, we’re going to talk about what happens when the system misses a step—and how those consequences don’t always land where they should. It’s the kind of thing that will make you stop and think… who’s really carrying the weight?

If this gave you a different perspective, share it. Because a lot of people have opinions about this… and not nearly enough understanding.

Waivers Pt. 2: Parents Being Paid

The Truth About Parents Being Paid 

Before I get into this, I want to be very clear about what I’m referring to. I am talking about parents caring for their adult children with disabilities. In recent years, there have been changes that allowed some parents to be paid for caring for minor children, particularly during COVID. That is a different situation.

I’m not speaking to that.

I’ve never been in that position, so I’m not going to pretend to explain something I haven’t lived. What I am speaking to is the long-standing reality of supporting adults receiving waiver services—and the assumptions people make about that.

The Assumption

A lot of people hear that and immediately think:

“They should be doing that anyway.”
“That’s their child.”
“Why are taxpayers paying for that?”

It sounds simple.

But it’s not.

What Changes at 18

Once an individual turns 18, the system doesn’t operate on the idea of “parent” the way people think. It operates on roles like:

  • Caregiver
  • Legal guardian
  • Responsible party

The focus becomes:

What does the individual need—and how is that support being provided?

What Happens When They Turn 18

This is a part a lot of families aren’t prepared for. When an individual turns 18, the law recognizes them as an adult with their own legal rights. That means, without legal authority in place, a parent may not automatically be able to:

  • Make medical decisions
  • Access medical records
  • Manage finances
  • Sign documents on their behalf
  • Direct their care

Even if they’ve been the one providing care their entire life.

(This is one of the things along our journey that took a long time for me to wrap my head around.  I kept saying, “But she’s my daughter, why do I have to go to court to get rights to make decisions for her?”  It was only after my friend A.J. who’s an attorney explained why, and reframed it as a protection for the individual, not a removal of rights for the parents.  This helped me immensely.  Thank you, A.J.)

So What Does That Mean?

It means families often have to take additional legal steps, such as:

  • Guardianship
  • Conservatorship
  • Power of Attorney (when appropriate)
  • Representative Payee (for Social Security benefits)

Each of these provides a different level of authority depending on the individual’s needs.

Why This Exists

This isn’t meant to make things harder.

It exists to protect the rights of individuals as adults. (Again, thank you, A.J., for helping me understand!)

The law starts from the position that every adult has the right to make their own decisions.

And then, if needed, legal steps are taken to support that.

The Reality for Families

What makes this hard is that nothing else changes overnight.

The needs are still there.
The care is still there.
The responsibility is still there.

You’re still doing all the same things. You just don’t automatically have the legal authority to do them anymore.

So…

The authority has to be established.

This Isn’t Occasional Help

For many individuals receiving services, support isn’t occasional. It’s daily. It can include:

  • Feeding
  • Bathing
  • Medication management
  • Mobility support
  • Behavioral support
  • Constant supervision for safety

And in many cases, it’s ongoing, throughout the day and night.

Let’s Be Honest About the Pay

This is where the biggest misunderstanding happens.

The care being provided is not fully compensated.

Waivers authorize a certain number of hours. But the need for care doesn’t stop when those hours run out. And the pay that is provided is often:

  • Around $13–$15 an hour
  • No benefits
  • No retirement
  • No overtime
  • Often unpredictable schedules
  • Nights, weekends, and holidays included

This is not a job people take for financial gain. It is support for work that already exists.

Another Truth People Don’t Talk About

For many parents, this isn’t about getting paid. It’s about a choice. Because a lot of parents could go out and work a full-time job making:

  • Two, three, even four times the pay
  • With benefits
  • With paid time off
  • With retirement plans

But instead, they choose this.

Not because it’s easier.
Not because it pays well.

But because they know their child.

They know:

  • Their medical needs
  • Their behaviors
  • Their triggers
  • Their routines
  • The little things no one else would catch

And they know they can provide a level of care that doesn’t come from training alone—

It comes from love and lived experience.

Let’s Talk About Who Provides the Care

Waivers are designed to support the individual receiving services. Part of that includes allowing others to provide care—either through an agency or through consumer-directed services (we’ll get into that more in another post). On paper, that sounds like a solution. In real life, it’s complicated.

What Care Actually Looks Like

This is what individuals may need support with:

  • Bathing and personal hygiene
  • Toileting
  • Bowel and bladder care
  • Meal preparation and feeding
  • Medication monitoring or assistance
  • Mobility support (lifting, transferring, preventing falls)
  • Seizure monitoring and response
  • Behavioral support
  • Constant supervision for safety
  • Getting ready in the morning and settled at night

This is hands-on, real, sometimes intense care.

And Who We Expect to Do It

The people providing this care are expected to:

  • Be trustworthy
  • Pass background checks
  • Be dependable
  • Be patient
  • Stay calm in emergencies
  • Show up consistently
  • Be physically strong enough for lifting and transferring and supporting

And they’re expected to do all of that under the conditions listed above.

Now Think About This

With all of that in mind—

How easy do you think it is for an individual to find and keep consistent, quality care?

The Reality

It isn’t easy.

Positions go unfilled.
Care falls through.
Consistency is hard to maintain.

And when that happens—

The individual receiving services is the one who feels it first.

Not Every Situation Looks the Same

There’s another truth that needs to be said. Not every parent is able to provide this level of care. And not every parent should.

Some individuals need:

  • 24/7 structured support
  • Medical oversight
  • A level of care that’s beyond what can be provided at home

And some parents know that. They make the decision that a group home, sponsored residential home, or other supported living environment is the better fit. Not because they don’t care.

But because they do.

This Is What Waivers Make Possible

Before waivers, options were limited. Too often, it meant institutional placement. Now, because of waivers, there are choices:

  • Care at home
  • Care through outside providers
  • Residential settings that are part of the community

That’s the beauty of this system.

It allows care to be tailored to the individual—not forced into one path.

And Let’s Be Clear About This

There is no one “right” way to do this. Some parents provide care themselves.
Some rely on outside caregivers. Some choose residential settings. All of those decisions can come from the same place:

Wanting the best possible life for their child.

Let’s Get Back to the Money Topic

Another thing people don’t see:

The money connected to these services goes right back into the Commonwealth.

It’s used for:

  • Clothing
  • Food
  • Gas
  • Medical needs
  • Community activities
  • Daily living expenses

That means:

  • Local businesses benefit
  • Communities benefit

This isn’t money disappearing.

It’s circulating—while supporting someone’s ability to live in their community.

Final Thought for Part 2

This isn’t about “paying parents.” It’s about making sure individuals receive the support they need.

Because at the end of the day:

It costs less.
It supports real lives.
And it helps ensure individuals are in the safest, most appropriate environment possible.

So often, we—society, lawmakers, professionals—get caught up in logistics and dollar signs. But it all comes back to the individual. The consumer. These are individuals already navigating a world that isn’t built with them in mind.

They are not a line item.
They are not a service recipient.

They are people living real lives—and they deserve the chance to live them fully.

Receiving services is part of it. Living their lives is the point.

What Comes Next

In Parts 3 & 4, I’m going to walk through what this looks like behind the scenes—
the clocking in, the documentation, the deadlines, and the parts most people never see.

I’ll be upfront—Parts 3 & especially 4 are gonna fire me up.

Because there’s a growing gap between the people making decisions… and the people living with them.

And that’s where things start to break down.

I won’t be mincing words.

❤️

If this gave you a different perspective, share it. Because a lot of people have opinions about this… and not nearly enough understanding.

How to Get Started With Waivers/Making Sense of the Jargon

Before we go any deeper into waivers, services, and all the moving parts… I wanted to start here. If you’re new to all of this, here’s the simplest way to start—who to call and what to ask for.

Getting Started with CCC+

If you think you or your loved one may qualify for CCC+ (Commonwealth Coordinated Care Plus), the first step is to contact your local Department of Social Services or your local Community Services Board (CSB) and ask for a screening for long-term services and supports. That starts the process to determine eligibility. From there, a screening team will assess needs and help determine if CCC+ services are appropriate. Here’s a link to The Arc of Virginia —they walk through this clearly and can help you understand what to expect.

Getting Started with a DD Waiver

For a Developmental Disability (DD) Waiver (like FIS, CL, or BI), your starting point is your local Community Services Board (CSB). You’ll request an intake and an assessment for DD waiver eligibility. Once eligibility is established, you’ll be placed on the waiting list if a slot isn’t immediately available. While you’re waiting, CCC+ may help bridge that gap. Here’s the link to The Arc of Virginia—they break this down in plain language and are a solid place to turn when you’re trying to figure out your next step.

Now, Some of the Words, Acronyms, Jargon

This is a downloadable PDF—a non-exhaustive list of common terms and acronyms, with clickable links for deeper explanation. Think of it as a starting point. Something you can keep, reference, and come back to as things start coming at you.

Because if you’ve spent any time in this world, you already know—
people in the field tend to speak in acronyms. Not because they’re trying to confuse you… they’re just used to it. It’s their everyday language.

But for families? It can feel like trying to follow a conversation where every other word is a code you were never given.

And more often than not… we don’t stop to ask what those acronyms mean.

Maybe we don’t want to interrupt.
Maybe we think we should already know.
Maybe we’re just trying to keep up.

But here’s the truth: you are allowed to ask. Every single time.

No one should expect you to navigate your child’s life, your loved one’s care, or your own services in a language that hasn’t been explained to you.

So this list? It’s just the beginning.
A way to put some plain words to things that are often overcomplicated.

We’ll go deeper.
But first—we make it make sense.

 

ACRONYMS & OTHER TERMSDownload

 

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. 

When I Found My Voice

The Day It Began To Change

(warning:  This may be difficult to read.)

She was 11.  11½ to be precise.  I climbed the steps to the school bus and saw her sitting there in the front seat by herself looking, well, unkempt and worn out.  My first words, were, “Wow, what’s the matter, punkin?”  She didn’t answer me—she can’t communicate in typical fashion.  I have to rely on facial expressions and her modified sign language to decipher how she’s feeling. I unbuckled B*, helped her down the steps, then turned to thank the substitute bus driver before I picked my daughter up to carry her inside the house. We had our usual routine when she arrived home from school.  I’d change her into more comfortable clothes, remove her AFO’s, rub her feet, get her something to drink, something to eat, then we’d sit and I’d ask her how her day went.  She couldn’t tell me, of course, but I was able to read the daily note from her teacher to catch up.  Of course there was always good news somewhere—how she matched colors out of a field of 5, how she helped in the library, how 4 kids from the regular education classes skipped their recess to come to her class to play with her.

Today was different.

Once she & I were inside, I removed her shoes and AFO’s.  I had a freshly washed pair of lounge pants to put on her for her to relax in after her day at school, so I stood her up to remove the ones she’d been wearing all day.  I pulled them down to her knees and gasped in horror.  On the inside of her thigh, from her groin all the way to her knee, she has a blood red, nearly bleeding, swollen and very hot to the touch injury.  I can’t call it a bruise, because this was a thousand times worse.  I’d never seen an injury like this—and it was on my child.

I tried—oh how I tried to hide my horror.  Immediately I dug her notebook from the backpack to see if there was a note about how it happened.  I knew there wouldn’t be, because her teacher and the aides in the class called me for everything–I wouldn’t have been informed with a note.  I called her teacher and asked what happened today.  “Nothing, she was fine when she left.”

I was stumped–had no clue how it could have happened.  To cover all the bases, I called the transportation office to let them know, too.  My Mom said she’d come down the next day and we would go to the school and talk in person to the principal, and she would also bring a camera so we could take photos. The following day, Mom & I arrived early to the principal’s office.  He’d been expecting us, and he’d also asked the transportation director to attend the meeting.  She arrived with the video from the bus the previous day.

That meeting is forever etched into my memory.  We all sat in silence, facing the television screen as the video played.  I witnessed it.  I saw it.  And there was nothing I could do because it had already been done. A 20-year-old female student (special education services are provided until the age of 21) was very obviously hurting my baby girl.  She kept leaning over almost on top of her. The only thing my child could do was say “Omma.”  She said it faintly, but repeatedly.  I noticed the 20 year-old kept looking into the mirror above the driver’s head as she held her down. At that time, my daughter weighed barely 70lbs.  She cannot walk independently, so she couldn’t escape.  She cannot talk, so she couldn’t tell the bus driver she needed help.  All she could do was sit there—and call out for me.

After this meeting, Mom & I went to her classroom.  She was sitting at the table, smiling, doing her schoolwork, and very obviously enjoying her day.  I wanted to put her on my hip, run out the door, and never return.  Just hide out in a cave where we would see no one and no one could ever hurt her again.  I didn’t know what disciplinary measures would be taken, but I was assured B would never be around her again.  As she began her physical healing, I had to begin my emotional & mental healing.  I knew, however, I could never unsee the video from the bus that morning.  What a horrible assault on my helpless child.  For 45 minutes.  On the ride home.  As I was fixing her snack plate.  Oblivious.

The Vortex

Late the next morning, as I started housework, a car pulled up in my driveway–it was the Director of Transportation and the Special Education Director.  Initially I thought, “Wow, how considerate.  They’re making a special trip all the way out here (we lived 30 minutes from the school,) to check on B.” I invited them in, apologized for the mess, apologized for how I looked since I’d not showered yet, then told them to have a seat.

The small talk stopped there. They came to tell me that I needed to take B to the emergency room to have an exam.  They watched another video from a different morning, and it was evident that she had been sexually assaulted as well as physically, not once, but at least twice on two different occasions.

My mind went into shock mode.  I no longer sat on the couch across from them, I was hovering somewhere above, watching this all take place.  I heard the words I said—asking crazy, insignificant questions as if it would make null and void what they just told me.  I saw my black pajama pants and white t-shirt, the story book by my foot, and the silky doll on the chair where B left it.   It seemed as though our conversation was playing on a radio, and someone was slowly turning down the volume…until I heard nothing but still saw mouths moving.

Once they were gone, I immediately changed clothes and left.  There was a torrent of tears and rage and hurt and pain and hysteria.  B’s principal met me at the door when I arrived and asked if there was something he could do.  I told him I wanted her teacher to accompany us to the ER.  Without hesitation, he said, “Of course.”

There’s no need to go into detail about what transpired at the hospital.  Suffice it to say, my 11 year-old baby girl had a rape kit done on her by two Sexual Assault Nurse Examiners, or “SANE” as I learned they were called.  One was male.  One was a female.  Her teacher and I held her hands, and stayed up by her head to keep her mind off what was going on.  All I could do was pray she wasn’t feeling violated yet again.

 After the exam, a female deputy took me into a room where we could talk privately. She handed me pamphlets and information for us as we began the process of healing.  All of the pamphlets seemed to have the words “sexual assault” somewhere on them.  She told me about counseling services that were available.  (B literally wouldn’t be able to talk about what happened, so any counseling would have been useless.) “I cannot believe I am standing here having this conversation in a hospital with a deputy.  This happens only on Law & Order!  This doesn’t happen to us!” I said. “I know,” she said.  Though her words were few, her compassion was evident.

Realities

As the days went on, I found out the following information: The examination revealed that there were scrapes and abrasions internally.

There were at least two instances of sexual assault, and the 20 year-old used a pop bottle and her fingers to brutalize my daughter.  The video that I didn’t see was so bad that one of the officers had to leave the room.

It was evident that the woman had done this before, as she was very calculating and planning in her method.  When asked why she kept looking in the mirror when she was assaulting B, she flatly said, “Because I knew if I got caught I’d get in trouble.”

The woman had a history of crude sexual talk, but it was overlooked.  “Of course she can’t be taken seriously about topics like that—she’s in special education.”  That was pretty much the thought by those who had heard her speaking in such vile ways.

The case went to court.  The deputy told me it wasn’t necessary that I attend, since B was unable to testify, and they had clear video evidence.  It was pretty clear-cut.  Unfortunately, however, the Commonwealth Attorney chose not to prosecute.  Why?  Because the woman was in special education. To this day, I still don’t understand that.

Something—something should have been done.  While I wholeheartedly agree that a typical prison wouldn’t be appropriate for her, she definitely didn’t need to be let off the hook and in the general public.  It would happen again. She needed serious intervention, and all children need protection from her.  Instead, her punishment was that she was put on homebound education.

Accommodations were made for us.  The Transportation Director gave B her own driver (of my choosing,) in a car by herself.  B’s principal asked if there was anything more he could do.  I told him that her school photo had been taken on one of the days she was assaulted, and I wouldn’t be able to look at them.  He arranged for her to have them retaken at another elementary school, and he allowed her teacher to accompany us.  Speaking of her teacher…I have no words to express my gratitude for her.  She’s one of the dearest souls I know.

There were also so many ways we were failed.

Had there been aides…
Had there been dual-busing, which was provided for all student except for those in special education…
Had those who worked with the woman had taken seriously her crude comments and innuendos and actions…
Had the attorney taken seriously the magnitude of the crime, and realized that regardless of the IQ of the one committing the crime, it’s still a crime…

Crossing the bridge to the new normal

So, how did we move forward?  No justice for my daughter, so what could I do for it not to have happened in vain? I could be proactive, and I could use this mouth that the good Lord gave me. I could love B–cherish her, reassure her, and comfort her as we walked through this together.

I researched and discovered that all the counties surrounding us had aides on buses.  I began pushing to have them hired in our county.

I learned about the Special Education Advisory Committee.  I began attending.

I went where other parents of children who had special needs would be and I began networking.  I shared our story freely, in hopes to bring awareness.  I implored parents to be hyper-vigilant about who their child was around, and never just assume they were safe—make sure they are.  Make sure that every measure that can be taken has been.  Never assume you know what someone is or is not capable of, because the truth is, we don’t know.

What can you do?  Find out who is around your child.  Who are their seatmates on the bus?  In the classroom?  In the cafeteria?   Are there safety measures you think could be taken but aren’t?  Share your concerns!  Talk to everyone who has contact with your child.  Get to know the bus driver, teachers, the aides, the principal, the office and cafeteria workers.  I was a familiar face at B’s elementary school, and I knew most all the staff by name—and they knew mine.

I was blessed that I was able to be involved, but I understand many don’t have the extra time.  If you can’t be there in person, send an email and introduce yourself.  Make occasional phone calls to touch base.  Open the lines of communication and keep them open.  And when an opportunity arises that you can be there in person, take it.

Thirteen years have passed.  To this day, I still have the occasional nightmare where I am on the bus, holding a video camera, and recording the assault.  I stand frozen, unable to put the camera down and save my daughter.  I am forced to stand there and witness it over & over until I’m mercifully awakened.

But also within these 13 years, I’ve shared. No, it’s not easy to do it, but the possibility of preventing another child (or adult) from experiencing what we did makes the difficulty of sharing worth it.  It’s unfortunate that often we don’t find our voices until we’re met with hurt, discrimination, violation, crime….but thankfully they arrive.  With force.  And loudly.

We moms of children who have special needs know that when we speak, we’re speaking not just for ourselves, but for other moms, for other children.  We stand in the gap.  Over the past 25 years, I’ve noticed that when one mom’s voice is weak, another mom’s voice gets stronger. (I’m referring to mothers specifically because I am one—I’m not taking away from the amazing dads who are involved.)

I didn’t realize it at the time, but when B was born I was immediately part of an extended family.  A family of voices by proxy, of protectors, of advocates.  Resilience, persistence, tenacity, and a fierce, protective love are dominant genes in this family, and it’s amazing how quickly a quiet, timid personality can transform into a Warrior Mom.  I am honored to be part of that family.

To all of you who have walked along side us in our journey of joys and sorrows, thank you…..

(*I’m using only an initial to protect her privacy)

bridge
Moving forward…together.