Starting next week, Nebraskans on Medicaid may lose their health coverage unless they fulfill the state’s requirement of working, volunteering, or attending school for at least 80 hours per month. By January, similar requirements will impact millions of low-income Americans across the country.
While exemptions exist for certain working-age individuals, such as those with young children or who are considered “medically frail,” confusion about the opt-out criteria is prevalent. For patients with complex medical conditions, these new requirements could pose additional challenges to accessing health care.
The early introduction of these work requirements in Nebraska has caused significant worry for Crystal Schroer, 31. Schroer, who suffers from multiple chronic illnesses including depression, ADHD, and a panic disorder, experienced heightened anxiety during the Covid-19 pandemic, making simple tasks like grocery shopping nearly impossible.
The situation improved when Schroer acquired Tarot, a 50-pound Australian shepherd-border collie trained in sensory grounding techniques. Despite this support, finding stable employment in rural Kearney, Nebraska, remained challenging.
“There’s not a lot I can apply to that I think she would be safe at,” they said.
In the coming days, the state will start verifying enrollees’ compliance with the new rules and will cut off coverage for those who fail to meet them.
These changes are set to be implemented in many other states by January 1, with Arkansas, Montana, and Iowa expected to introduce their programs ahead of this deadline.
The work requirements were established to help finance President Trump’s tax cut law enacted a year ago. Republicans maintain that these requirements will motivate individuals to find employment, despite many Medicaid recipients already being employed or having other responsibilities, such as caregiving.
Democratic attorneys general have contested the rule in court, arguing that the guidelines published by the Centers for Medicare and Medicaid Services in June differ from the advice previously given to states. Their case was presented to a district judge on Tuesday, which could influence the future of the medical frailty exemption in over two dozen states.
Currently, states, legal advocates, and individuals with chronic illnesses are trying to determine which health conditions allow for exemption from these requirements and how to validate the severity of their conditions.
Initially, states hoped they could automatically classify individuals with serious or complex conditions as medically frail, as explained by Jennifer Hananoki, senior counsel at Holland & Knight. “A patient who has terminal cancer, a patient who has advanced end-stage renal disease and is going to a dialysis facility three days a week, those types of scenarios.”
However, beneficiaries will now need to demonstrate that their illness is severe enough to prevent them from working 20 hours a week. The functional impairments caused by their condition must be well-documented. Beneficiaries can self-attest during the first year, but by 2028, their medical frailty exemption must be substantiated with health data, according to the regulation.
Experts express concern that the numerous unanswered questions surrounding medical frailty will result in more vulnerable individuals being excluded from the program. Preliminary estimates from the Congressional Budget Office indicate that over 7 million people might lose coverage in the coming years.
Researchers suggest that creating a system to review medical frailty applications within six months will be a significant challenge for states. They also warn that the CMS policy could introduce new bureaucratic obstacles for vulnerable individuals managing their health, potentially risking access to vital treatments.
“For an already overtaxed health care system, with providers with inadequate time, with patients with horrendous challenges. … You don’t even have words for how bad all this is,” said Ada Hamosh, a clinical geneticist at Johns Hopkins Department of Genetic Medicine, speaking for herself.
More paperwork and self-management
Chronically ill individuals attest that managing illness is arduous. They often face a deluge of paperwork, outreach, insurance appeals, and follow-ups just to secure a diagnosis or treatment.
It took Schroer four years and consultations with several specialists to develop an effective care plan. Medicaid has covered all these expenses, including an ADHD medication costing $400 a month. “We finally just found the combination that works this year,” they said, highlighting a decrease in panic attacks from every other day to monthly.
Nebraska has compiled a nearly 300-page index of diagnoses that may qualify someone as medically frail. Schroer’s conditions are included, but the CMS stated in June that individuals with “complex or serious medical conditions” must still demonstrate how their illness affects daily tasks like eating, bathing, and walking. States can also amend the list of conditions, or face federal investigation if too lenient, according to the rule.
Data such as diagnostic codes, clinical encounter records, prescriptions, and hospitalizations can be used to support a claim of medical frailty. However, the responsibility is likely to fall on Medicaid patients and their doctors due to data limitations, researchers informed STAT.
If doctors face the requirement to fill out medical frailty exemption forms every six months or annually, as suggested by the CMS rule, “It’s going to break the system,” said Benjamin Sommers, a primary care provider and professor of medicine at Harvard University. “There’s just no way.”
Who is sick enough?
The new rules prompt difficult questions about who qualifies as sick enough to receive health benefits. Initially, Medicaid eligibility was based on low income, but medical frailty is more complex.
The rule states that conditions like well-managed HIV/AIDS, asthma, hypertension, anemia, generalized pain, prediabetes, type 1 or type 2 diabetes, obesity, psoriasis, headaches, and ADHD are typically not expected to impede work or community involvement.
However, medical professionals and patients recognize that many diseases and disorders can be stable one week and unpredictable the next. Certain conditions can fluctuate rapidly, such as asthma during poor air quality events or autoimmune conditions in hot weather.
“I sometimes have worsening arthritis symptoms with storms,” explained Lorraine Boissoneault, who authored a book titled “Body Weather,” exploring the connection between chronic illness and weather.
“You might not be able to shower at some points in time, and then other times you can. You might be able to do some work occasionally and then, other times, you can’t. That’s been the case for me, even when I’m in a bad flare,” she shared. Boissoneault has psoriatic arthritis, celiac disease, endometriosis, Graves’ disease, and Hashimoto’s disease. She relies on her husband’s insurance, but if she were single, she would likely be on Medicaid.
Many are still on a “diagnostic odyssey,” seeking the right specialists to diagnose their condition. Clinicians told STAT that some individuals, including 1 in 10 Americans with a rare disease, may never receive a clear ICD code. What will happen to them under the new Medicaid rules? Their health care coverage may be jeopardized, especially when many cannot afford disruptions.
States have the option to implement short-term “hardship exemptions,” allowing Medicaid patients to miss work during hospitalizations or when seeking care outside their community. However, states may choose not to offer such exemptions.
“[Our] biggest concern right now is that eligible patients with serious and complex conditions could lose their health care coverage because the system is too hard to navigate,” said Carolyn Sheridan, associate director of state policy at the National Organization for Rare Disorders.
States must create a system for individuals to request a medical frailty exemption even if their diagnosis is not on the accepted list, but the process and its flexibility remain unclear.
A negative track record
In previous attempts to enforce work requirements for Medicaid, such as in Arkansas, individuals who should have been exempt were nonetheless removed from coverage, sometimes in large numbers.
Researchers and advocates fear this scenario could be replicated on a national scale when the new year arrives.
A recent study of low-income adults on Medicaid revealed that approximately half are at risk of losing coverage despite having serious health impairments. Those at risk were more likely to report poor health, including mental health issues, according to researchers.
“The narrower that criteria or those definitions are, the more concerned I am that we may risk disenrolling people who should absolutely stay on Medicaid,” said Darshali Vyas, a pulmonary and critical care fellow at Mass General and Beth Israel Deaconess Medical Center, who co-authored the study. “These are people who have high health needs.”
Federal authorities have a different perspective, describing the requirements as a means of empowerment.
Work and community service can help individuals with serious and chronic health conditions “escape isolation and dependency, build confidence, achieve self sufficiency and prosperity, and improve health,” according to the interim final rule.
As more individuals join the workforce and leave Medicaid, it reduces expenditures, aligning with the Trump administration’s goal to decrease federal spending.
In some respects, Schroer’s story aligns with this vision. They received a full-time job offer for administrative work at a university just days before Nebraska planned to remove individuals not meeting work criteria from Medicaid. However, it took over a year of searching for Schroer to secure this position, and they believe the administration’s view is misguided.
“People that I know in the disabled community would rather be working or doing something that brings in at least a little bit of income,” they said. “We want to go to movies. We want to be able to buy our action figures, or our Starbucks, or our little treats, and not have to worry about that.”
Data indicates that work requirements are ineffective in securing employment for individuals: At the state level, “It does not increase employment and leads to rapid and broad-scaled coverage loss,” Vyas informed STAT.
Part of the issue is that many individuals required to comply with Medicaid work requirements may not be aware of them. Sarah Maresh, director of Nebraska Appleseed’s health care access program, noted that she has heard of people calling state caseworkers with basic questions and receiving incorrect information. Call center wait times have been as long as an hour and a half, she reported.
Some Nebraskans are unsure whether they are part of the Medicaid expansion population.
“There’s no way for them to look it up on their portal. They can’t look at their Medicaid card to find that out,” Maresh said. “We’re hearing from a lot of people who are already really confused about it.”
After Arkansas implemented requirements in 2018, one-third of those affected said they were unaware of the new policy. Over half of those who had heard about the change didn’t realize it applied to them, according to a study. The courts blocked the policy a year later, but these challenges would be difficult for other states to overcome.
New Hampshire attempted its own work requirements in 2019 but halted implementation once it realized the potential coverage losses among Medicaid-eligible individuals. A federal judge eventually blocked the program.
Sommers, the Boston doctor and health economist, commented, “It turns out, probably even more important than outreach is: How much can the state do on its own, with the data they already have?”
STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.
