Elisa Brader is worried she'll soon have to prove she's working in order to continue receiving Medicaid. She thinks she shouldn't do this.
Brader, 27, of Bloomington, Indiana, has a pacemaker and painful joint disease. He also suffered a spinal injury that caused the vertebrae in his neck to become fused, preventing him from turning his head.
The state Medicaid agency considers Brader “medically fragile,” giving him access to an expanded range of benefits such as physical therapy.
But new federal rules will require more than 18 million Medicaid recipients nationwide starting in 2027 to prove they work, volunteer or study at least 80 hours a month to maintain their coverage.
Brader is exempt as long as she is considered medically fragile.
But in the absence of clear guidelines at the federal level, states must agree on how to define medical frailty. It's a major decision that could result in many people losing access to Medicaid, according to government officials, consumer advocates and health policy experts.
“I'm terrified,” Brader said. “I was already struggling to get this medical care.”
There's a lot at stake
President Donald Trump's One Big Beautiful Bill would cut Medicaid spending by nearly $1 trillion over the next decade. Most of these projected savings will come from ending coverage for those who do not comply with the new labor rules.
These cuts help fund other GOP priorities, such as improved border security and tax cuts, that primarily benefit high-income people.
Conservative lawmakers argue that Medicaid, the government's health insurance program for people with low incomes or disabilities, has become too big, especially since it was expanded to more low-income adults under the Affordable Care Act (ACA). They also argue that requiring beneficiaries to work is a common sense measure.
Trump's new tax and budget law offers tax relief to several people who may have difficulty complying with work rules, including those considered “medically fragile.” The law defines certain conditions as medical frailty, such as blindness, disability, and addiction. But it doesn't include many others.
Instead, the rule exempts those with a “serious or complex medical condition,” a term whose interpretation may vary by state.
State officials say they need more clarity to ensure that people who can't work for health reasons remain eligible for Medicaid. They are also concerned that even with a clear definition, many people face the bureaucratic challenge of having to continually prove they are medically fragile, which is difficult if adequate medical care is not available.
“The stakes are high,” said Kinda Serafi, a partner at consulting firm Manatt Health.
The new work requirements will affect Medicaid beneficiaries in 42 states and Washington, DC. Eight states—Alabama, Florida, Kansas, Mississippi, South Carolina, Tennessee, Texas and Wyoming—have not expanded their Medicaid programs to include more low-income adults, so they will not have to comply with these rules.
According to the nonpartisan Congressional Budget Office, these Medicaid rules are expected to become major factor causing loss of health insurance in the next decade.
44% of adults covered by Medicaid programs in states that have expanded them have at least one chronic diseaseAccording to KFF data.
Challenge for States
State Medicaid agencies are rushing to implement the new rules without much guidance from the U.S. Department of Health and Human Services (HHS), which has yet to issue specific guidance. Agency spokesman Andrew Nixon said the federal definition of “medically fragile” will be clarified next year.
Ultimately, states will decide who is sick enough to be exempt from work requirements. And it won't be easy for government personnel or computer systems to track it.
Each year, state eligibility systems evaluate millions of applicants to determine whether they are eligible for Medicaid and other government programs. Now these same systems will also have to check whether new or already registered people meet the job requirements.
Jessica Kahn, a partner at consulting firm McKinsey & Co., urged states to start planning now to adapt their systems for verifying employment status. States can do “a lot” without even waiting for federal guidance, Kahn — a former federal Medicaid program official — said during a recent advisory hearing on the program. “Time is running out.”
State Medicaid officials are mulling the issue.
“Medical frailty is a very complex thing,” Emma Sando, Oregon Medicaid director, said during a recent panel. It is difficult to prove the presence of conditions that impede employment, such as mental disorders, he said.
The state might try to use information from a person's medical records, for example, to determine whether they are medically vulnerable. But this information may not clearly reflect a person's health status, especially if they do not have regular access to health care services.
That's a challenge for eligibility systems, which historically haven't had to review medical records to evaluate claims, Manatt Health's Serafi said.
“This is a completely new phenomenon for registration systems and they are simply not ready,” he added.
Lobbying groups representing private health insurance companies that administer Medicaid in several states have also asked federal officials to clearly define what it means to be medically fragile so that it is applied uniformly.
In one the letter was sent on November 3Medicaid Health Plans of America (MHPA) and the Association of Community Plans (ACAP) have recommended that applicants be allowed to qualify for a waiver by simply stating on their application that they have conditions that make them medically vulnerable. Successful implementation of these exclusions will be “critical,” both organizations said, given the “seriousness of the health risks associated with loss of coverage” for these populations.
Some government officials worry that these work rules for people with chronic illnesses could have unintended consequences.
Jennifer Strohecker, who recently stepped down as Utah's Medicaid director, reiterated the seriousness of the problem, especially for people with diabetes enrolled in Medicaid.
He explained that while they can live full lives on insulin, that could change if they lose insurance for not meeting work requirements.
Currently, whether a person is considered medically vulnerable depends largely on where they live.
For example, in Arkansas, people must indicate on their Medicaid applications if they are disabled, blind, or need assistance with activities of daily living.
About 6% of the 221,000 people enrolled in the state's Medicaid expansion program are considered medically fragile, according to Gavin Lesnick, a spokesman for the Arkansas Department of Human Services.
In West Virginia, the state accepts medically infirm status if a person self-reports it.
In North Dakota, the process is more stringent. Applicants must complete a health questionnaire and provide additional documentation such as medical history records and treatment plans. Last year, more than half of the applications were denied, according to Department of Health and Human Services spokeswoman Mindy Michaels.
The Indiana Family and Human Services Administration, which administers the state's Medicaid program, declined to be interviewed and said it could not comment on individual cases such as Brader's.
Brader fears the additional bureaucracy will cause her to lose Medicaid coverage again. She said she was temporarily kicked out of the program in 2019 for failing to comply with state employment rules when Indiana determined that her student work did not count as employment.
“Every time I tried to get help from the state of Indiana, it was a bureaucratic nightmare,” he said.
As states wait for federal guidance, Kristi Putnam — a fellow at the conservative Cicero Institute and former secretary of the Arkansas Department of Human Services — said that even if a state creates an expansive list of conditions that qualify as frailty, there will always be a line drawn.
“You can’t create an exclusion policy that covers everything,” he said.
