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 Part 3, 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—Part 3 is 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.