Nebraska’s Medicaid work requirements have left patients facing confusion, longer waits and disputed coverage decisions, with one cancer patient saying he cancelled essential appointments after being told he was no longer insured.
Eli McCreary, from Omaha, said he was diagnosed with kidney cancer at 64 before a hospital run by CHI Health told him his Medicaid cover had ended. He said he was warned that appointments would be cancelled unless he paid himself.
When he called for help, McCreary said a representative told him he needed to work to retain his benefits and had failed to meet the requirement.
“You’re required to do work to stay on,” he recalled being told. “And you haven’t fulfilled your work requirement.”
McCreary, who has diabetes and chronic obstructive pulmonary disease, has also struggled with drug addiction. He was discharged from a substance use treatment programme in March and diagnosed with cancer in his right kidney in June.
“I don’t understand what job I can get,” he said. “I can’t walk. I can hardly breathe. I can’t move around. What job am I going to get?”
He said he cancelled a CT scan and other tests at the hospital, part of CommonSpirit Health, and delayed an appointment with a cancer specialist who travels to Omaha. “I missed my window of opportunity with him for another month,” he said.
CHI Health declined to answer questions about McCreary’s case. A spokeswoman said the organisation was committed to helping patients understand their healthcare cover and access financial assistance where available.
Nebraska Medicaid work requirements trigger confusion
Nebraska became the first state to enforce Medicaid work requirements under the One Big Beautiful Bill Act when it introduced the rules on May 1, eight months before most states are due to follow.
About 70,000 adult Medicaid recipients are affected. They must show that they work or take part in a qualifying activity for 80 hours a month, unless they meet an exemption.
The law includes exemptions for people who are too ill to work, including those with a serious medical condition or a substance use disorder. Attorneys and benefits specialists said McCreary’s treatment and health conditions should have qualified him for an exemption.
Nebraska’s health department said McCreary was eligible for Medicaid through the Affordable Care Act, placing him in the group covered by the new rules. But Jeff Powell, a department spokesman, said he had not lost cover because of the work requirements.
Mr Powell said McCreary had no lapse in coverage and was disenrolled after turning 65, when he became eligible for Medicare. McCreary is now enrolled in Medicare, with Medicaid helping to cover some of his healthcare costs.
He was eventually able to rearrange the appointments he had cancelled. He said the cancer had grown significantly and underwent surgery in early November to have his right kidney removed.
“This cancer ain’t going to stop just because I ain’t got insurance,” he said. “It’s going to keep working on me.”
McCreary said he might have missed letters about his cover and does not use Nebraska Medicaid’s online portal. He also appears to have called a helpline for food stamp accounts, which the state outsources to a private company, rather than the department’s main benefits service.
Mr Powell said the health department had no record of McCreary contacting it. The case highlights how people can be left trying to resolve complex benefits decisions while dealing with serious illness.
Calls and paperwork increase
Advocacy groups working with low-income and working-class Nebraskans said the rollout had been troubled by inadequate staffing, poor training and inaccurate information.
Internal state documents showed that most work-related denials among adults applying for Medicaid by early July resulted from paperwork not being submitted. The department described this as expected.
Average waiting times at the state health department’s call centre almost doubled from about 13 minutes in May to 26 minutes in July, before falling in August. Advocates said some people had waited for hours.
The department received more than 101,000 calls in August, a 66% increase from May.
Kenny McMorris, chief executive of the Charles Drew Health Center in North Omaha, said about half of its 13,385 patients were on Medicaid and 42% of those patients were subject to the requirements.
“If people are working, they just don’t have time to be sitting on the phone to go through all of this stuff,” he said. “You can leverage the technology, but you still got to have people there to help.”
Nebraska officials said they had sent tens of thousands of letters, text messages and emails explaining the new system. Planned changes included online document submissions and notices written in plainer language.
State data cited by the health department showed that 86% of affected applicants had either met the requirement or qualified for an exemption, while 93% of existing enrollees retained their cover. Officials described the implementation as successful.
However, by August, about 1,100 Nebraskans had been denied benefits because of the work requirements, most after failing to respond to requests for information. Overall Medicaid enrolment had fallen by about 4,600 people since May, a decline of 1.4%.
Millions spent on implementation
Nebraska budgeted $8.2 million over two years for contractors supporting the Medicaid changes, including the work rules and more frequent checks on eligibility.
The money was allocated to Public Consulting Group, based in Boston, and Covendis, an Atlanta-based company that supplies information technology staff. State documents listed at least six contractors costing more than $250,000 each, including one whose compensation exceeded $1.8 million.
Mr Powell said contracted staff were used when employing a state worker was impractical or uneconomical, or when specialist skills were required. He cautioned that funding requests submitted to federal Medicaid regulators might not reflect actual spending.
Sarah Maresh, a programme director at the advocacy group Nebraska Appleseed, said the costs were “shocking”.
“When you put in complicated policies like this, there are large corporations making money behind the scenes,” she said. “This just further confirms that it’s happening in Nebraska quietly.”
Consultants and state officials discussed the launch at a national conference in August. Brent Weaver, a Medicaid technology official at the US Centers for Medicare and Medicaid Services, said federal officials had been alarmed when Nebraska announced it would go live on May 1.
Because federal guidance on exemptions was not issued until June 1, Nebraska officials said they initially had to rely on the broad wording of the legislation.
Jacob Kawamoto, a deputy director in Nebraska’s Medicaid division, said the state had to “get comfortable being uncomfortable”. A consultant involved in the work described long meetings and praised the state’s implementation, while Ms Maresh said there were gaps in the training and that caseworkers remained confused.
Federal taxpayers will cover most of the cost of implementing the changes. Congress allocated $200 million in one-off funding for states, while federal rules allow the US government to pay up to 90% of the cost of changes to state IT systems.
The changes are expected to apply to millions of adult Medicaid recipients in more than 40 states next year. The Congressional Budget Office has estimated that the policy will result in 5.3 million more people being uninsured in the US by 2034.
Nebraska’s Republican Governor Jim Pillen has welcomed the reforms, saying the state was excited to be the first to introduce them. Democrats have said they intend to repeal the Medicaid changes if they gain congressional majorities, although any repeal could face a veto from President Donald Trump.
