| Eight million Americans receive Medicaid in exchange for caregiving. Whether that will remain is uncertain.

| Karen Fischer

| Caregiving is a deceptively slippery term to define. According to Merriam-Webster, caregivers are people who provide direct care for children, older people, or the chronically ill. Elite Insurance Partners, a Medicare broker, pares down caregiving further to be someone who is “responsible for the health and well-being of someone who may not be able to care for themselves.” The Johns Hopkins School of Medicine describes the role as someone who cares for another due to “short- or long-term limitations due to illness, injury or disability.” Perhaps most importantly, the Center for Medicaid and Medicare Services (CMS) categorizes caregivers as “family members, friends or neighbors who provide unpaid assistance to a person with a chronic illness or disabling condition.”

Depending on the definition, vastly different tasks among a range of people qualify as caregiving, so the term remains somewhat opaque. Is a mother taking care of a newborn a caregiver, or a family member running errands for an uncle who broke their leg and needs extra help? One would think yes, but according to the above definitions, the answer could be no, depending on who you ask. As it stands today, more often than not those who are cared for are thought of as the one in five Americans who are over 65 years of age, and receiving Medicare.

With the most economically vulnerable caregivers at risk of losing their health coverage through Medicaid in the coming year due to July 2025’s H.R.1, otherwise known as the One Big Beautiful Bill, these nuances matter more than ever.

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What makes the situation extra confusing is that every state calls Medicaid something different, and less than half of all states even include the word “Medicaid” to describe their public insurance programs, which are indeed funded by federal and state taxpayer dollars. Someone may have insurance coverage through Medicaid today with no idea that they have new stipulations to remain insured, depending on where they live.

Here’s what to know about how Medicaid and caregivers intersect.

Lay of the land
Medicaid as a whole was deeply impacted by budget cuts in H.R.1. Budget cuts are projected to come from implementing work requirements in states that expanded the income thresholds for people to qualify for Medicaid after President Obama’s roll-out of the Affordable Care Act in 2010.

Today, 40 states have expanded Medicaid, which ensures that people earning up to 138 percent of the federal poverty line, or $33,000 per year for a family of four, can access free health insurance.

The ten states that didn’t expand Medicaid allhave different ranges for how much money households need to earn to qualify for coverage based on age and dependents, but adults with no dependents are not eligible for Medicaid coverage whatsoever in eight states, mostly in the South.

Meanwhile, the number of caregivers throughout the country has grown 50 percent since 2015.

“There are about 63 million Americans providing ongoing, demanding care for a loved one with a serious illness or disability, and when you factor in folks providing child care, that number balloons to 130 million,” said Jason Resendez, the President and CEO of the National Alliance for Caregiving at the Association of Health Care Journalists conference in May. 

Read our interview with Resendez

Of those 63 million caregivers, approximately eight million qualify for health insurance themselves through Medicaid due to their caregiving activities. This varies dramatically by the state: In Kansas, only 4 percent of caregivers are insured through Medicaid, while in Louisiana, 26 percent of caregivers receive health coverage through the program.

A key differentiator between the two is Medicaid expansion status: Kansas never expanded Medicaid, so fewer people are enrolled, while Louisiana expanded, and more caregivers have qualified for health insurance.

“When we talk about Medicaid, we usually mean coverage for the person receiving care… But Medicaid is also the insurance that keeps caregivers themselves healthy enough to keep providing that care,” Resendez said.

These caregivers are spending about 27 hours per week on average taking care of a loved one, so the task is akin to a part-time job. Nearly half of these caregivers report dealing with poor economic impacts due to caregiving, whether that’s due to the stress taking a toll on health and its downstream consequences, or simply because it’s hard to hold down a job when caregiving, Resendez explained.

However, there is a silver lining in H.R.1: Caregivers are exempt in every single state from completing work requirements, so they will remain insured without the hassle of the paperwork burden, but exactly how every state interprets caregiving makes a difference.

According to CMS guidance issued on June 1, this exemption only applies to “parents, guardians, caretaker relatives, or family caregivers of a dependent child 13 years of age and under, or a disabled individual.” 

Defining and implementing “disability” to keep 13 percent of caregivers insured through Medicaid is a point of contention that states must navigate moving forward.

What’s Next?
Federal Medicaid redetermination will begin in December, which will trigger checks to see if everyone on the rolls today will continue to qualify for insurance. Between twice-a-year eligibility checks and navigating work requirements, an estimated 7.8 million more people are projected to lose Medicaid coverage by 2034.

Some states are jumping into implementing work requirements early, such as Nebraska, which started in May, Montana in July, and Iowa in December. Arkansas will also have a soft launch in July, Resendez explained.

One beneficial regulation for caregivers is that states have a statutory obligation to use all of the information at their disposal, including tax records and enrollment in other supports, to determine if someone is eligible for Medicaid and re-enroll them automatically before asking for more documentation.

But that tricky definition of what caregiver exactly is is what makes implementing some kind of data source to confirm ongoing caregiving difficult.

“Very recently we’ve introduced billing codes for training family caregivers [on the Medicare side], so there may be some claims data there to rely on,” Resendez said, describing one aspect of his organization’s swift and strategic response to H.R.1.

But at the end of the day, the ambiguity of what caregiving is and who it applies to is somewhat intentional, depending on who at CMS is looking at the definition. Some states may look at an ambiguous rule and cast a wide net to include as many people as possible. 

Other states may be more stringent, asking caregivers to prove what care they’re providing, who they’re providing it for, and if that relationship is strong enough to qualify the caregiver for health insurance. The fear is that people performing important, largely unpaid, yet incredibly valuable tasks will be quietly booted off of their health insurance with little recourse.

“No one really knows who actually qualifies for these exemptions,” Resendez said. “That’s the gray area where eligible caregivers end up losing coverage.”

Karen Fischer is an independent writer and reporter. Her work has appeared in such publications as CQ Researcher, Prism Reports, Eater, The Verge, and Business Insider, among others. She also produces The Gumbo Pot, a weekly Substack featuring independent reportage on education, health, culture, food, infrastructure, and energy.