Fear of a Cough in the Night

There’s a certain cough, common among children under five, that can be particularly terrifying for parents. It sounds like a seal’s bark, and it’s a telltale sign that the child has croup, a virus that causes children’s airways to constrict.

It’s a cough that Libby knows well. Her son, now seven, struggled with respiratory problems from ages one and a half to five, and had what she calls “massive croup” all the time. Libby, a fortysomething woman in south Brooklyn who declined to give her last name to the Voice, spent countless nights with her son in the bathroom, the door shut and the hot water running in the shower, trying to create a steam bath to ease his coughing.

Then came the night, in 2014, when her son simply couldn’t breathe. Libby and her husband called for an ambulance, which came and took their then-four-year-old son, on oxygen, to the local emergency room, where he stayed, still on oxygen, for hours, until he could breathe normally again.

Libby, who works two days a week doing administration work for an architecture company, recalls another ambulance ride, this one for her husband in 2005, when he was hit on a subway platform. That one cost a couple of thousand dollars, even though her husband was insured. But because their son has insurance through Child Health Plus, New York State’s program for low-income children who don’t qualify for Medicaid, his ambulance ride cost nothing more than the low premium Libby pays each month — as did the oxygen he received, and his ER stay.

“The times when I’ve needed to go to the ER for myself, I’ve called a cab,” says Libby, who put her son on Child Health Plus because her company provides insurance only for its employees. (Her husband, a freelance writer, currently purchases his insurance through the New York State health exchange.) But for her son, she says, the ambulance “showed up and they saved his life and we went to the hospital and everything was great, and it was nine dollars a month.”

For the past 27 years, Child Health Plus has been providing parents in New York with the peace of mind that no matter what is going on in their lives, or with their children’s health, they will be able to get care for their kids. Now, that peace of mind is gone, replaced by anxiety over whether their children will remain insured in a few months’ time. On September 30, Congress failed to renew funding for the national Children’s Health Insurance Program, or CHIP, which funds state programs like Child Health Plus. And even though the House finally passed a bill on November 3 reauthorizing the program for five more years, the bill is so partisan in nature that Democrats are vowing it won’t pass the Senate. Meanwhile, the delay in funding is leaving parents uncertain about how to proceed as open enrollment for 2018 health insurance begins, and has states scrambling to make contingency plans for what to do should their CHIP funds run out before federal funding is renewed.

Teresa, a 34-year-old woman living in Brooklyn whose two sons are on Child Health Plus, has been following the news about CHIP closely. “I’m honestly very confused,” she says. “They’re making it very hard to find answers, which is kind of infuriating.”

Though no state has yet shut down its CHIP program, for some that scenario is not far off. According to a report by Georgetown University’s Center for Children and Families released late last month, at least six states will exhaust their CHIP funds by early January. This means they will either have to find funds within their own budgets to make up for those lost federal dollars, or — the more likely scenario, considering the numbers can run into the hundreds of millions — close down their CHIP programs.

New York has already notified the federal government that it will close Child Health Plus should funding not be renewed by the time its CHIP reserves run out early next year. The delay “is needlessly increasing pressure and uncertainty on the state as it begins the process of crafting next year’s budget,” says Ben Anderson, director of health policy at Children’s Defense Fund–New York. The state had planned its 2018 budget assuming CHIP funds would be in place; as those funds totaled $1.1 billion last year, their sudden loss would leave a giant budget hole that the state, already facing a $4 billion deficit, would be hard-pressed to fill.

“If Congress doesn’t figure this out soon,” says Anderson, then even though CHIP reserves are projected to last into the first quarter of next year, “New York will have to start dedicating more time and energy to contingency planning, which can be an expensive undertaking.” That includes sending notification letters to enrolled families, something states are trying to put off for as long as they can, to avoid unnecessarily causing alarm. But Colorado and Utah have already indicated they may start sending out those letters this month.

CHIP, which requires periodic reauthorization from Congress, currently provides insurance for nearly 9 million children nationwide; some states’ CHIP programs, such as Minnesota’s, also cover pregnant women. CHIP was created in 1997 through bipartisan legislation, and it continues to have bipartisan support today. Even the federal government, which has not been particularly healthcare-friendly, has been facilitating its existence over the past month; the Centers for Medicare and Medicaid Services — an agency of the U.S. Department of Health and Human Services that works with states to administer CHIP funds — last month reallocated a total of $230 million in unspent CHIP funds from previous years to nine states whose reserves were in dire straits.

Yet CHIP’s looming renewal got lost earlier this year in Congress’s repeated attempts to repeal the Affordable Care Act. In the month since the deadline passed, the renewal bills that were approved by committees in both the Senate and the House in early October were promptly back-burnered in favor of tax reform.

The bill that passed the House, in a largely party-line vote of 242-174, still makes renewal unlikely in the near future, partially thanks to partisan disagreements over how the government would offset the program’s funding. Democrats have been protesting provisions that would help pay for CHIP by cutting subsidies to Medicare recipients who make more than $500,000 a year — cuts that could cause those recipients to leave the program, thereby weakening Medicare’s risk pool. The bill is also unpalatable to Democrats because of a punitive provision regarding the Affordable Care Act: Low- and moderate-income ACA enrollees who receive subsidies would see their three-month grace period for late premium payments reduced to thirty days. The nonpartisan Center on Budget and Policy Priorities estimates the provision would result in up to 688,000 people losing their insurance.

“If the House had negotiated agreement on the offsets with the Democrats, [the bill] could have gone straight through” to the Senate, says Joan Alker, executive director of Georgetown’s Center for Children and Families. As is, she says, there is little likelihood the bill will gain the necessary sixty bipartisan votes to pass the Senate. Reports are now suggesting that funding may instead get renewed via an omnibus spending bill at the end of the year. By then, Washington and Virginia will have already sent out letters notifying families of possible changes in coverage, and Arizona, whose funds run out this month, will have been forced to close down its program.

This apparent congressional impasse comes just as enrollment has opened for 2018 on the health exchange, which could lead newly eligible families to not enroll their children, says Alker. Some of those children “will end up in very inadequate coverage, or private coverage that’s very expensive that will have high deductibles,” she says. “Some will end up uninsured.”

Teresa, who declined to give her last name to the Voice, had planned to renew her family’s coverage on November 1, as soon as open enrollment started. (She and her husband, who run a branding and graphic design shop, get their insurance through the exchange.) But when she asked her sons’ insurer, right before enrollment began, whether their usual plan would be available next year, the representative she spoke to could only say she didn’t want to give her misleading information — leaving Teresa uncertain as to how to proceed.

Teresa says that Child Health Plus has been a “game changer” for her family since she first put her sons on it in 2016. While her older son, now nine, is what she calls a “textbook kid,” going to the doctor only once a year, her younger son, now seven, has struggled with health issues since he was born five weeks premature — including unilateral hearing loss that had progressed to both ears by the time he was five. The family went from one specialist to another, trying to determine the cause without luck, until last year a new pediatrician suggested genetic testing. Based on her previous experience with commercial insurance, Teresa assumed they’d have to pay out of pocket for the testing, and had no idea how the family would afford it. (Genetic tests can cost up to $2,000.) But Child Health Plus covered the test — and, when that test didn’t turn up anything, it covered a second, more in-depth one, which did: They learned that their son has a rare genetic condition that causes, among other things, progressive hearing loss.

Beyond the relief it gave Teresa and her husband to finally know what was going on with their son — “to have that clarity was worth a million bucks,” she says — Child Health Plus also provided coverage for the hearing aids they decided to get him. The devices can cost between $1,000 and $4,000, and most insurers don’t cover them. “It would have been a huge hit on our family,” Teresa says. But Child Health Plus “made available to our kid something that he clearly needs for every day.”

She adds, “My kid was born this way. Kids shouldn’t be penalized for being born with this condition or that condition. They should be supported so they can thrive.”

Child Health Plus “allows kids who would otherwise be outside the medical system to get care, go to a pediatrician, have a place to go to coordinate vaccines, get healthcare, 24-7 access to a doctor,” says Dr. Steven Goldstein, president of the New York State American Academy of Pediatrics Chapter 2, which represents Brooklyn, Queens, and Nassau and Suffolk counties. Prior to the existence of Child Health Plus, says Goldstein, the children it now covers “had to just go to a hospital.” The program was first enacted in 1990 and expanded seven years later when CHIP funding became available; it now offers comprehensive coverage to children in families up to 400 percent of the poverty level, or $81,684 for a family of three, and, along with Medicaid, it has reduced the uninsured rate of children in New York to 2 percent.  “Now they basically get treated like they have private insurance,” says Goldstein, whose offices in Williamsburg and Kew Garden Hills, Queens, mostly treat Medicaid and Child Health Plus patients. “Their lives have been changed.”

Child Health Plus has seen a spike in enrollment, increasing 17 percent statewide between July 2016 and July 2017, culminating in a total of 347,855 children. (Because children dip in and out of the program, based on changes to their parents’ incomes and life circumstances, nearly twice that number of children are covered by the program at some point during any given year.) The report speculates that this increase may be due to the rollout in 2016 of the state’s new Essential Plan, which provides coverage to non-Medicaid-eligible adults up to 200 percent of the federal poverty level — the exact demographic whose children would benefit from Child Health Plus and yet who might not have previously known it existed.

“When we were looking for insurance for [my husband], I was like, ‘Why can’t we all just buy Child Health Plus?’ ” says Libby, who knows several other kids on the plan, including her sister’s two children upstate. She says it would be a “devastating loss” if the program were shuttered. Should that happen, she would most likely pay to put her son on her employer-sponsored plan, increasing her premiums from $9 a month to $500 a month and doubling her $2,000-a-year deductible. “I’m sure we would do it, because the child is top priority,” she says. “But something else would have to get cut back.”

Teresa — whose household is already facing a 20 percent increase in premiums for next year — says she would put her sons on one of the marketplace’s family plans. But she estimates the cost of those premiums would be $1,000 to $1,500 per person — which for her family of four, she says, would be “kind of like another mortgage.”

“It’s kind of the gray spot, where we are,” says Teresa, whose income lands her in the higher range of what Child Health Plus covers. “We make too much money to qualify for certain things, but $1,300 premiums” — which is what she and her husband will be paying next year — “that’s also too much money. That’s why this program is so great, because it does make it possible to have access to amazing care that you couldn’t afford.”

For now, Teresa must wait and hope that Congress will act before the program disappears. “I know firsthand what it’s like to be a self-employed person who doesn’t have a lot of choices for insurance in the first place, and then be in the position of trying to get care for your child, and you might not be able to get the answers you need or the support you need,” she continues. “I don’t understand why they would not be able to continue these plans. Every kid deserves this.”