Joseph Daskalakis’ son Oliver was born on New Year’s Eve, a little over a week into the current government shutdown, and about 10 weeks before he was expected.

The prematurely born baby ended up in a specialized neonatal intensive care unit, the only one near the family’s home in Lakeville, Minn., that could care for him.

But Daskalakis, who works as an air traffic controller outside Minneapolis, has an additional worry: The hospital where his newborn son is being treated is not part of his current insurer’s network and the partial government shutdown prevents Daskalakis from filing the paperwork necessary to switch insurers, as he would otherwise be allowed to do.

As a result, he could be on the hook for a hefty bill — all the while not receiving pay. Daskalakis is just one example of federal employees for whom being unable to make changes to their health plans really matters.

Although the estimated 800,000 government workers affected by the shutdown won’t lose their health insurance, an unknown number are in limbo like Daskalakis — unable to add family members such as spouses, newborns or adopted children to an existing health plan; unable to change insurers because of unforeseen circumstances; or unable deal with other issues that might arise.

“With 800,000 employees out there, I imagine that this is not a one-off event,” says Dan Blair, who served as both acting director and deputy director of the federal Office of Personnel Management during the early 2000s and is now senior counselor at the Bipartisan Policy Center. “The longer this goes on, the more we will see these types of occurrences.”

While little Oliver Daskalakis is getting stronger every day — he’s now out of the ICU, according to his father’s local air traffic union representative — it’s unclear how the situation will affect his family’s finances.

That’s because out-of-network charges are generally far higher than being in-network, and NICU care is enormously expensive,no matter what. Those bills could add up, especially as the family’s current insurance plan has an out-of-pocket maximum of $12,000 annually. Because Oliver was born before the new year, the family could face that amount twice — for 2018 and for 2019.

And Daskalakis still isn’t getting paid.

“I don’t know when I’ll be able to change my insurance, or when I’ll get paid again,” Daskalakis wrote to Sen. Tina Smith, D-Minn., who shared the letter on Facebook and before her Senate colleagues last week.

Other families are also worried about paperwork delays, and the financial and medical effects a prolonged shutdown could cause.

Dania Palanker, a health policy researcher at Georgetown’s Center on Health Insurance Reforms, studies what happens when families face insurance difficulties. Now she’s also living it.

After arranging to reduce her work hours because of health problems, Palanker knew her family would not qualify for coverage through her university job. No problem, she thought, as she began the process in December of enrolling her family in coverage offered by her husband’s job with the federal government.

But there was a hitch.

“We could not get the paperwork in time to apply for special enrollment through the government and get it processed before the shutdown,” Palanker says.

Georgetown allowed her to boost her work hours this month to keep the family insured through January, but Georgetown’s share of her coverage will end in February.

Palanker’s treatments are expensive, so she is likely to hit or exceed her annual $2,000 deductible in January — then start over with another annual deductible once the family secures new health coverage.

“I’m postponing treatment in hopes that it is just a month and I’m back on the federal plan in February,” says Palanker, who has an autoimmune disease that causes nerve damage. “But I can’t postpone indefinitely, as my condition will get worse.”

Overseeing federal health benefits programs is within the purview of the Office of Personnel Management, whose data hub is operational, according to a spokeswoman. But getting information to that data hub to make the kind of changes Daskalakis, Palanker and others need depends on the individual agencies that employ government workers.

The OPM has told government agencies “that they should have [human resources] staff available during the lapse, specifically to process” such requests, which are called “qualifying life events,” the spokeswoman says.

In a written statement Wednesday, Smith said: “Oliver’s story is a powerful reminder that hundreds of thousands of real families have had their financial and personal lives turned upside down by this unnecessary shutdown.” The Minnesota senator called on the president to come back to the negotiating table.

For Daskalakis, there’s been some recent good news.

His union representative, Tony Walsh, says both the OPM website and Daskalakis’ insurer now indicate that the family’s request to change to an insurance plan that classifies the hospital as “in-network” will be retroactive to Oliver’s birthday — so the out-of-network charges may not play a role.

Just to be safe, “Joe is currently working on an insurance appeal based on no in-network care [being available],” Walsh reports in an emailed statement.

Still, the family has already received an initial $6,000 bill from the hospital, Walsh notes. He says that $6,000 does not include costs associated with Oliver’s birth or his stay in the intensive care unit — those charges likely are still to come.

Walsh says the shutdown is affecting a broad swath of employees in ways many lawmakers never anticipated.

The workers “are essential to the system,” he says, “and it’s unfair they are being treated this way.”

Kaiser Health News, a nonprofit news service, is an editorially independent program of the Kaiser Family Foundation and not affiliated with Kaiser Permanente.

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Last September, the Trump administration unveiled a controversial proposal — a policy that, if implemented, could jeopardize the legal status of many immigrants who sign up for some government-funded programs, including Medicaid.

The Trump proposal is still working its way through the public comment and evaluation process, and could go into effect as early as this year, though some state attorneys general say they would challenge any such policy in the courts.

In the meantime, some doctors and clinics are torn: They want to keep patients informed about the risks that may be coming, but don’t want to scare them into dropping health benefits or avoiding medical care right now.

“We are walking a fine line,” says Tara McCollum Plese, chief external affairs officer at the Arizona Alliance for Community Health Centers, which represents 176 clinics in the state. “Until there is confirmation this indeed is going to be the policy, we don’t want to add to the angst and the concern,” she says.

However, if immigrants do come to a clinic asking whether using Medicaid now might affect their legal status down the road, trained staff members are ready to answer their questions, McCollum Plese says. (According to legal specialists, the rule would not be retroactive — meaning it wouldn’t take into account a family’s past reliance on Medicaid.)

Other providers prefer to take steps that are more proactive to prepare their patients, in case the proposal is adopted. At Asian Health Services, a clinic group that serves Alameda County, Calif., staff members pass out fact sheets about the proposed changes, provide updates via a newsletter aimed at patients, and host workshops where anyone with questions can speak to legal experts in several Asian languages.

“We can’t just sit back and watch,” says CEO Sherry Hirota. “We allocate resources to this, because that’s part of our job as a community health center — to be there not only when they’re covered,” she says, “but to be there always” — even when that coverage is in jeopardy.

Currently, people are considered “public charges” if they rely on cash assistance (Temporary Assistance for Needy Families or Supplemental Security Income) or need federal help paying for long-term care.

Trump’s proposed change to that rule, which is awaiting final action by the U.S. Department of Homeland Security, would allow the federal government to consider immigrants’ use of an expanded list of public benefit programs, including Medicaid, food stamps and Section 8 housing as a reason to deny lawful permanent residency — also known as green card status. Medicaid is the state-federal health insurance program for low-income people.

If the proposed rule change goes into effect, it could force patients to choose between health care and their chance at a green card, McCollum Plese says. “And most people will probably not take the services.”

Already, some immigrant patients are skipping medical appointments out of fear stoked by the proposed rule, according to providers and advocates.

“For now, our focus has been on correcting misinformation, not necessarily raising awareness among those who haven’t heard about the potential changes,” says Erin Pak, CEO of KHEIR Center, a clinic group with three locations in Los Angeles. “This is a proposal that thrives on fear and misunderstanding,” she says, “so we wanted to be thoughtful about how and when to engage patients on the issue, given that nothing has passed into law.”

The Department of Homeland Security is reviewing more than 200,000 comments from the public before it issues a final rule. And it’s still possible the department won’t adopt the rule at all, legal experts say.

At KHEIR Center, most patients are immigrants from Korea. Many are highly aware of the proposed rule because of the coverage it has received in Korean-language media, according to Kirby Van Amburgh, the center’s director of external affairs.

Other groups served by the clinic, such as Latino and Bengali immigrants, have tended to ask few questions, Van Amburgh says.

Trained staff address patients’ questions one-on-one, she says, and hand out a fact sheet when needed.

Last month, L.A. Care health plan, which covers more than 2 million Medicaid enrollees in Los Angeles County, hosted a webinar on the topic for about 180 providers. David Kane, an attorney at Neighborhood Legal Services of Los Angeles, led the webinar and urged doctors to tell concerned patients that nothing has changed yet — and that most immigrants would not be affected.

If the federal government adopts the rule, it would not be effective immediately, he notes; there would likely be a 60-day grace period before the changes take effect. After that, implementation could be further delayed or stopped in court.

John Baackes, CEO of L.A. Care, has been critical of the Trump administration’s proposal, and says his organization offered the webinar because of the estimated 170,000 clients — legal immigrants — who could potentially be affected.

“I think we’ve got to let people know what could come, and try to give them more accurate information so that they don’t act imprudently,” Baackes says. To do that, “we have to stay current.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. KHN is not affiliated with Kaiser Permanente.

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