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.
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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.