How The Medicaid Work Rule Would Hurt Family Caregivers And People With Disabilities

The sponsors of the House Republican debt limit bill, the Limit, Save, Grow Act, say its goal is to encourage low-income people to work. But it may have exactly the opposite effect, especially for people with disabilities. And, at the same time, it may throw family caregivers into an impossible situation—having to choose between caring for their loved ones or losing their own Medicaid benefits.

The law effectively would drop from the Medicaid roles people who work less than 80 hours a month. Some estimate more than 11 million people with disabilities are enrolled in Medicaid, about one in seven of those under age 65. Others say it is closer to one-third. Many do work but often find it difficult to hold down full-time jobs.

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More than half report serious cognitive difficulties, nearly half have trouble with mobility, and 40 percent struggle with tasks such as visiting a doctor’s office. Still, many could, and want to, work.

A Hobson’s Choice

The bill would force them to make a Hobson’s choice. To keep their Medicaid benefits, they could try to find at least half-time work or get a physician to certify that are, in the language of the bill, “physically or mentally unfit for employment.”

Imagine that you are living with Down syndrome, mental illness, or Multiple Sclerosis. You work. But perhaps because transportation to a job is so difficult or just because it is so hard to get hired at all, you work less than half-time.

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If this bill becomes law, you will lose your Medicaid benefits unless a doctor declares you “unfit for employment. Imagine being declared “unfit.”

Yet the price for losing Medicaid would be steep.

More Than Health Care

Some people could still access free or low-cost health insurance through the 2010 Affordable Care Act’s health exchanges. But Medicaid provides more than health insurance. It also can deliver other, non-medical services and supports, including connections to housing, job training, and transportation services. Without those supports, people with disabilities would be even less likely to work.

And what else would happen? By quitting their jobs and receiving that physician’s certification that they cannot work, people with disabilities could qualify for Social Security Disability (SSDI) or Supplemental Security Income (SSI). Making matters more confusing, receiving SSI normally qualifies a person for Medicaid benefits. But it appears that would not be true under the new law.

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Hitting Family Caregivers

Then there is what the bill would mean for family caregivers of older adults and people with disabilities.

They could continue to receive Medicaid only if they are “the parent or caretaker of an incapacitated person.” This unusual language would make compliance with the law difficult at best.

“Caretaker” is not normally used in the context of public benefit programs. And the bill never defines what it means. How would anyone qualify for a caretaker exemption?

Similarly, the phrase “incapacitated person” also is unusual in the context of Medicaid or other public programs. State Medicaid rules often are based on the inability to perform certain “activities of daily living” or other specific situations but not on being “incapacitated.” .

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That word is more often used in guardianship law, where it can trigger a complicated, difficult legal proceeding. Perhaps for Medicaid it also could be certified by a physician. Perhaps.

Not only would these rules challenge people with disabilities and their family caregivers, but it would be an administrative nightmare for states. Each runs its own Medicaid program, even though the federal government funds a large share. And they would have to certify and then probably regularly recertify that those receiving care still are “incapacitated.”

How would they do it, and how would they enforce it, especially since care recipients may not be Medicaid enrollees?

Who Gets Hits The Most?

It isn’t unusual for family caregivers, especially low-income caregivers, to quit their jobs to assist loved ones. A 2021 survey by the Rosalynn Carter Institute for Caregivers found that one in five full-time workers cares for a family member with a serious illness or disability. Nearly 20 percent said they had to quit a job to care for a relative and 40 percent went to part-time work.

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And while about 19 percent of respondents overall reported quitting paid jobs to care for a family member, resignations were far more common among low-income workers. About 35 percent of those with a high school degree or less, 26 percent of hourly workers, and 28 percent of those making less than $40,000-a-year gave up paid work to care for a family member.

These are exactly the people who would get hit hardest by the House GOP’s Medicaid work rule. There is little evidence that work requirements increase paid labor among Medicaid enrollees overall. And they’d be enormously disruptive for people with disabilities and family caregivers.