On December 22, three days before Christmas, Nicole McMinn got a “devastating” letter in the mail. Connecticut health officials wrote to tell her that funding for Husky B, the state’s name for its Children’s Health Insurance Program, would soon run out, and the program would end on January 31. They would have to buy a health plan for their son through the Affordable Care Act instead at that time.

“It was devastating and terrifying,” Nicole, who lives in Cheshire with her husband and 2-year-old son, told me by phone. “It basically ruined our holiday.”

The McMinn family is one of millions left in limbo while Congress has failed to permanently extend funding for CHIP. The program’s funding technically expired at the end of September. Congress and the Trump administration have so far averted total disaster through short-term fixes, but money could start to dry up in the next week or so, and states could have to freeze enrollment or drop kids off their coverage.

There have been rumblings late this week that Congress might finally pull together and extend CHIP for the long term, especially once a Congressional Budget Office report showed it would be effectively cost-free to fund the program for the next 10 years.

Nicole’s son has complex medical needs, the result of a neonatal type of encephalopathy, that require expensive medical equipment, medications, and physical therapy. Her husband stays home to act as a full-time nurse. The Husky B program helps keep that care affordable to them, especially with only one source of income: They pay as little as $50 a month. If they switched over to private coverage, they could be paying hundreds of dollars.

Even so, Nicole has debated whether they should switch to private insurance anyway, after the past few months shook their confidence that CHIP would be there for their son over the long term. Congressional inaction has left families losing faith in a program that, research has shown us, demonstrably improves their ability to access and afford health care.

“It just sucks,” she said. “I hate the idea thinking it could just be gone.”

How CHIP benefits kids, explained in three charts

Nicole and her son are an extreme case. Most families covered by CHIP have more routine health needs. But in many states, those families are starting to fear for their coverage.

Several states, including Connecticut and Colorado, have notified families that their coverage could end if Congress doesn’t extend CHIP’s funding. Georgetown’s Center for Children and Families estimated that 1.7 million children in 24 states could be at risk of losing CHIP coverage by the end of February.

That’s despite research that has shown CHIP has a demonstrable benefit: It makes health care more affordable, and thus families are more likely to use it.

A 2014 paper by Urban Institute researchers Embry Howell and Genevieve Kenney, published in Medicare Care Research and Review, provided an authoritative overview of the relevant research on Medicaid and CHIP coverage and their benefits for children.

These three charts, based on their findings, should make plain how the programs, which complement each other in many states, have increased insurance coverage among America’s kids and made it easier for them to access health care they need.

The researchers aggregated several studies, so the math doesn’t work out perfectly. But the trend line is clear: Medicaid and CHIP significantly expanded insurance coverage among children and, in turn, substantially reduced their uninsured rate.

Medicaid and CHIP coverage, by extension, helped ensure that children would have a regular place to receive medical care: a primary care doctor or clinic. There was also a notable drop in children and families forgoing care because they wouldn’t be able to afford it.

The same trends showed up in dental care, which is particularly important for kids and adolescents.

The researchers also highlighted research that suggests CHIP and Medicaid coverage decreases child mortality rates in the United States. American children are much more likely to die young than their counterparts in other wealthy countries.

From Howell and Kenney:

Finally, two national-level studies of mortality using similar methods find a significant association between Medicaid/CHIP expansions and reductions in child mortality. The first study covers the early period of the Medicaid expansions (Currie & Gruber, 1996), and a second study (Howell et al., 2010) uses similar methods but covers the full Medicaid/CHIP expansion period. Both find a similar result, that a 10% increase in Medicaid/CHIP eligibility is associated with an approximately 3% decline in child mortality. Thus, the evidence on the impact of Medicaid/CHIP on child mortality is positive from the two existing studies of this issue.

Yet Congress has let the program twist in the wind for more than three months now. They are promising a breakthrough now, but other deadlines have come and gone.

Even if the program is eventually funded, this could do long-term damage. Previous episodes in Florida and elsewhere have shown how much uncertainty around the CHIP program can unsettle families. Uncertainty does real and lasting damage to the program’s reputation and its ability to keep families enrolled when they suddenly doubt that it will be there for the long term.

The McMinn story shows how vital CHIP is for families

The McMinns’ son’s medical care is a constant presence in their life.

When her son was born two and a half years ago, Nicole knew her life was going to change forever — and not in all the ways she had expected. The boy had a rare genetic disorder, a type of encephalopathy that causes severe seizures and slows development.

At first, while Nicole was working part time after finishing graduate school, the family was covered by Medicaid. But as he got older, the boy was moved to CHIP. The program wouldn’t cover everything that Medicaid had, particularly in-home nursing care, so the family decided to have Nicole’s husband stay home. Nicole works helping young people in crisis.

The McMinns’ son has complex medical needs: They have medical equipment in the house to monitor his oxygen, they have regular prescriptions he must take to prevent seizures, and they regularly take him to physical and occupational therapy.

Nicole is covered by a private health plan through Connecticut’s ACA marketplace, and her husband is covered through the Department of Veterans Affairs. Nicole said she has checked and if they had to buy a private plan for their son instead through the ACA marketplace, it would likely have a $5,000 deductible. One piece of their boy’s equipment cost $800.

For a family with an income of less than $50,000, those are prohibitive costs. It might become difficult for only one of the parents to work, a situation that to date has been essential to their well-being.

“It is everyday life,” Nicole told me. “He’s on a very scheduled system. I’ve never met anybody in my life that needs so much health care.”

The family does have to pay money out of pocket, but it is relatively nominal under CHIP: $10 copay for a doctor’s visit, $10 copay for a prescription. She estimated they spend about $50 a month out of pocket. It’d be a lot more without the program.

“He is receiving all of those things, which, if we didn’t have Husky B, we’d be paying an arm and a leg,” Nicole said. “With us only having a one income, it’s so helpful to have somebody stay home and not having to worry about paying for things we can’t afford.”

She is holding out hope that Congress will act, as the recent buzz in Washington suggests they will, and extend the program for five, six, or even 10 years. But her faith in CHIP is shaken.

“The whole idea about it being in limbo, because this could happen again? That really bothers us,” she said.

The December 22 letter from Connecticut officials warning them that CHIP coverage could end without congressional action — “Merry Christmas,” Nicole said ruefully — was the first she had heard about the funding lapse. She felt a sense of hopelessness, as she began to explore what their alternative options would be. One state worker offered only that they could keep watching the news.

“That’s not helpful to me,” Nicole said. “That’s all we can do, just keep watching the news?”