Medicaid changes will hurt family caregivers, experts warn

Medicaid cuts under President Trump’s sweeping tax and spending package will harm family caregivers, experts warn, by reducing access to health care for themselves and the people they care for, which could then lead to more caregiving responsibilities.  

The Congressional Budget Office estimates the package will reduce Medicaid spending by roughly $911 billion over the next 10 years and increase the number of uninsured Americans by up to 10 million.   

Some of those who could lose coverage are among the 8 million — or 13 percent — of family caregivers in the United States who receive their health insurance coverage through Medicaid, according to the National Alliance of Caregiving.   

“We are very concerned of the impact of the just finalized Medicaid cuts on the community of family caregivers,” Jason Resendez, president and CEO of the alliance, said during a call with reporters earlier this week.   

Medicaid recipients will be subject to more frequent eligibility checks, in part, due to revised work requirements for the joint state and federal program. Now, adults between the ages of 19 and 64 will need to work or participate in community service activities for at least 80 hours a month to be eligible for health care coverage under Medicaid.   

There are some exceptions for parents with dependents as well as for those deemed “medically frail” or who are pregnant or postpartum, according to the health care policy nonprofit KFF.   

Many caregivers cannot work outside the home because of the intense care their family members need, or can only work limited hours, which can make fulfilling Medicaid work requirements difficult to impossible.   

This was the case for Lisa Tschudi, host of caregiving podcast “Love Doesn’t Pay the Bills,” who stayed home full time to take care of her daughter who has ataxic cerebral palsy and epilepsy.   

“We really did not have other options,” she said. “I, many times, tried to line up some non-me care for her during the workday and a job for myself, and I never really got my start in a paid job in that way.”   

Her daughter’s epilepsy was poorly controlled for years as a child and teen, which required her to travel for frequent doctors' appointments on top of taking care of her younger daughter.   

“It was a lot to manage,” she said.   

Work requirements might force some family caregivers to look for outside help, if that is an option, which represents a new expense and, potentially, a new challenge to navigate.   

“Even if you can find outside providers to come in ... families often find that they are not reliable,” said Elizabeth Edwards, senior attorney at the National Health Law Program.   

“Some of that inconsistency of how people show up as providers can mean it's very hard to hold a job.”   

Family caregivers also already spend huge amounts of time navigating numerous bureaucratic hurdles, and new work requirements will add to the paperwork they have to fill out to prove they are eligible for health care under Medicaid.   

This extra administrative work also increases the likelihood of errors occurring in the eligibility system, which could delay coverage or prevent some from being enrolled altogether, according to Edwards.   

That is what happened to many Medicaid recipients in Arkansas and Georgia when the two states implemented work requirements in 2018 and 2023, respectively.   

More than 18,000 people in Arkansas lost Medicaid coverage over the 10-month period the state rolled out work requirements without increasing employment, according to a KFF analysis. Georgia still has one of the highest uninsured rates in the country at 12 percent, according to the Commonwealth Fund.   

“We anticipate [them] not just being faced with these eligibility issues, but family caregivers losing Medicaid coverage because of these additional hurdles that they’ll be forced to traverse,” Resendez said.   

About 11 million family caregivers in the U.S. receive payment for the care they provide, according to Resendez. Those payments primarily come through home and community-based services and consumer-directed programs at the state level.

But those programs will likely start to lose funding as states are forced to decide what to fund with fewer Medicaid dollars, experts told The Hill.   

“When states have less money and are forced to make decisions, home and community-based services are the first optional benefits to get cut,” Resendez said.   

Tschudi, as well as her husband and second daughter, are all paid family caregivers under a home and community-based service their home state of Oregon’s Medicaid program provides. Without that program, her family would likely have to go back to unpaid caregiving, which would not be financially possible at this time. 

“I don’t wish it on anyone,” Tschudi said about the struggles that come with unpaid caregiving. “I really think you leave families in an impossible situation when you don’t pay for caregiving.”