Caregiving Is Work. Policy Needs to Catch Up.

We often talk about work requirements in very simple terms. We talk about whether someone is working, how many hours they are working, and whether they should be required to work in order to maintain Medicaid coverage.

What I think we need to talk about more honestly is what happens when the reason a parent cannot maintain traditional employment is because they are already working—caring for a child with significant medical needs.

I know what that looks like because I lived it.

For four years, I was on intermittent Family and Medical Leave because of the severity of my daughter's medical condition. During those four years, there were periods when I barely worked. There were months when I was only able to work roughly a week to a week and a half.

It wasn't because I didn't want to work. I wasn't trying to avoid employment, and I certainly wasn't looking for an easier way out of my responsibilities.

My daughter was sick.

Her medical needs determined our schedule. There were appointments, procedures, hospitalizations, medications, specialists, complications and all of the unexpected situations that come with raising a medically complex child. There were times when I simply could not be at work because I needed to be where she was.

I still tried to work whenever I could.

One of the reasons I made such an effort was because we did not have Medicaid. I needed to maintain my private health insurance because my daughter's condition was so serious that I needed access to the best coverage I could possibly maintain. I needed her specialists, her hospital, her procedures, her medications and the healthcare system that had become such an important part of our lives.

So I would work enough hours to maintain my health insurance, even when there wasn't much more I could realistically accomplish.

That was my reality for roughly four years.

When I look back now at how much work I missed during that period, I honestly cannot imagine what it would have felt like to also depend on Medicaid for my daughter's healthcare while being told that I needed to meet a work requirement.

That is where this conversation becomes much more complicated for me.

Because a medically complex child doesn't stop needing care because their parent has to meet an employment requirement.

A hospitalization doesn't care how many hours you've worked that month. A specialist appointment doesn't care whether you've already used all of your available paid time off. A medical complication isn't going to wait until you've satisfied a work requirement.

The parent still has to be there.

And that's something I think gets lost when we talk about family caregivers in policy conversations.

We tend to separate employment from caregiving as if they are two completely different things. Either someone is working, or they're not. Either they're employed, or they're dependent on government assistance.

For families raising medically complex children, life is rarely that simple.

A parent may be managing medications, coordinating specialists, arranging transportation, communicating with schools, dealing with insurance companies, managing medical equipment, attending appointments, monitoring symptoms and spending nights in the hospital. They may be providing care that would otherwise require a nurse, personal care attendant, respite provider or other paid professional.

That parent may not be receiving a paycheck for any of it.

But that doesn't mean they aren't working.

It means the work they're doing isn't showing up on a W-2.

This is why I was encouraged to see that some states are beginning to recognize caregiving within their Medicaid work-requirement policies. Connecticut, for example, identifies parents, guardians and caregivers of people with disabilities among those who may qualify for an exemption.

That recognition matters because it acknowledges something families have known for a very long time: caring for someone with a disability can be so demanding that it directly affects your ability to maintain traditional employment.

I would take that recognition one step further.

We shouldn't only recognize caregiving as a reason someone cannot work. We should recognize caregiving as work.

There is an important difference.

If we only view caregiving as an exemption, we're still starting from the assumption that employment is the productive activity and caregiving is the reason someone isn't participating.

For many families, caregiving is the reason the healthcare system continues to function.

Parents are often the people coordinating all of the moving pieces.

They are the ones making sure the prescription gets filled, the appointment gets scheduled, the specialist gets the information they need, the school understands the child's limitations, the medical equipment is available and the child gets where they need to go.

When something changes, the parent is often the first person to notice it.

When something goes wrong, the parent is usually the person trying to figure out what to do next.

That work has value.

It has value to the child, to the family, to the healthcare system and to society.

I learned this very clearly during those four years when my own employment became secondary to my daughter's health.

I wanted to work. I valued working. I understood the importance of maintaining my career and financial independence.

I simply couldn't pretend that my daughter's medical needs weren't there.

And because I had private insurance, I had to make another calculation that many families may not have the luxury of making: How much do I need to work to keep the insurance she depends on?

That was a difficult enough calculation with private insurance.

I cannot imagine making that calculation while also worrying that failing to meet a Medicaid work requirement could jeopardize the coverage my child depends on.

That is why I think policymakers need to look beyond the question of whether a parent is working and ask a much more meaningful question:

What work is this parent already doing?

If a parent is spending a significant portion of their time caring for a medically complex child, what happens when we require that parent to spend additional time in paid employment?

Who provides the care?

Can the family find someone qualified?

Is there a home-care worker available?

Can Medicaid reimburse that worker at a rate that makes the job sustainable?

What happens when there is no one available?

Too often, the answer is that the parent fills the gap.

We don't necessarily see that as a healthcare cost because there isn't an invoice attached to it. But the cost doesn't disappear. It is simply transferred to the family.

The parent may lose wages. They may reduce their hours. They may lose opportunities for advancement. They may leave the workforce altogether. They may lose retirement contributions or employer-sponsored benefits.

Eventually, they may reach a point where they are exhausted and have nowhere else to turn.

That is why caregiver policy and healthcare policy cannot continue to be treated as separate conversations.

If we are serious about keeping medically complex children safely at home, then we have to think about the people making that possible.

If we are serious about reducing unnecessary hospitalizations and institutional care, then we have to recognize the role family caregivers play in preventing those outcomes.

If we are serious about Medicaid sustainability, then we need to understand what happens when the care Medicaid doesn't pay for is simply absorbed by a parent.

And if we are going to talk about work requirements, we need to be honest about what “work” actually means.

A parent caring for a medically complex child may not have a traditional job during a particular period of their life, but that does not mean they are doing nothing.

Sometimes they are doing some of the hardest work there is.

I know because I lived it.

For four years, I had to constantly calculate what my daughter's health required, what my job required and what I could realistically manage. There were months when those things simply could not coexist in the way they were supposed to.

I was fortunate to have private health insurance to protect. Many families don't have that option.

That is what keeps bringing me back to the Medicaid conversation.

If we know that caregiving can make traditional employment impossible, why are we still framing the conversation primarily around whether a parent is working?

Why aren't we asking how we can support that parent so they can care for their child without being pushed further into financial instability?

Why aren't we talking more about paid family caregiving, respite care, home- and community-based services and the availability of qualified caregivers?

Most importantly, why aren't we recognizing that supporting the caregiver is also a way of supporting the child?

A medically complex child doesn't need less care because their parent needs to work.

The care still has to happen.

Someone still has to give the medication. Someone still has to make the appointment. Someone still has to drive to the hospital. Someone still has to sit beside the hospital bed. Someone still has to understand the treatment plan and make sure it actually happens at home.

When that person is a parent, we need to stop treating their caregiving responsibilities as though they are simply an obstacle to employment.

Caregiving is work.

And if our healthcare policies are going to acknowledge that caregiving can prevent someone from meeting a traditional work requirement, then perhaps it's time for our broader policies to acknowledge what family caregivers have known all along:

The work may not come with a paycheck, but it still has value.

Tomiyo Fujinaga-Williams is a healthcare advocate, health equity strategist, and author of the forthcoming memoir, The Rainbow in My Skye, which explores the emotional, financial, and systemic realities of raising a medically complex child.