How Congress's inaction has left children's health program on life support

Dakota Flores sees a future for her children that she never had.

Tyler and Harmonie, both in middle school in San Antonio, Texas, are flourishing. Both are honor roll students, choir singers, and musicians. And they have a shot at going to college, something Ms. Flores was not able to do.

But Flores worries that future could be derailed by their chronic health conditions. Her children’s health insurance coverage, along with the coverage for an estimated 8.9 million other children around the country, could soon disappear after Congress allowed funding for the Children’s Health Insurance Program (CHIP) to lapse at the end of September.

For the past 2-1/2 months, states have been funding the joint federal-state program out of their own pockets, but they are starting to run out of money. Most of CHIP’s funding is federal, so if Congress doesn’t reauthorize funding by the end of the year, the program will start shuttering in early 2018.

Last week, Colorado became the first state to send letters to CHIP families warning them that support might end in January. Texas has asked the federal government for $90 million to keep its program running through February. If it doesn’t get confirmation by the end of this week that the additional funds are coming, the state says it will have to send similar letters to its more than 400,000 CHIP families, with the letters arriving days before Christmas.

For Flores, a single mother of four in San Antonio, the stress and anxiety have been mounting. Tyler has been diagnosed with attention deficit disorder so severe he could not sleep at one stage. Next week she will be meeting with doctors to get a last-minute check-up for Harmonie, who has a chronic eye condition, and to discuss coverage options should CHIP fold next year. If her prescription changes and she doesn’t have insurance, she says, “I’d have no idea where we’re going to go from there.”

“I’m just a bundle of nerves, because they’ve come so far,” says the mom, who now says she’s the one who has trouble sleeping. “The way I see it is they’re the next generation, and you’re stopping our next generation from succeeding.”

Bipartisan success

Health experts say CHIP has been an unmitigated – and bipartisan – success since Congress created it in 1997.

The program provides health insurance for children and pregnant women in households that earn too much to qualify for Medicaid, but not enough to afford private insurance, covering basic care from routine checkups and doctor visits to immunizations and prescriptions. The percentage of uninsured children nationwide dropped from 15 percent in 1997 to 4.5 percent in 2015, thanks in large part to CHIP.

Funding for the program needs to be reauthorized every few years, and in the past most Republicans and Democrats have been quick to agree to do so. The high-quality and affordable care it provides makes CHIP popular on the left, and the flexibility the program allows individual states makes it popular with conservatives.

When House Republicans introduced a bill to reauthorize the program earlier this year, however, it included provisions to pay for it in ways Democrats didn’t agree with, such as taking money from the Medicare and Affordable Care Act programs. The Senate Finance Committee passed a bill to reauthorize CHIP for five years, but doesn’t yet know how it would pay for it. Since then, both chambers have been consumed by efforts to repeal the Affordable Care Act and pass a tax bill, health policy experts say.

“It’s not necessarily an issue of do they think CHIP should exist or should be funded, but it is an issue of priority,” says Mimi Garcia, director of policy and external communications at the Texas Association of Community Health Centers. “Other issues just took precedence in Congress this year.”

That funding for CHIP would be used as political leverage the way it has this year is “unprecedented,” several health policy experts say.

“For advocates, you want to save the program, but you don’t want to at the detriment of another program,” says Sonya Vazquez, chief program officer at Community Health Councils in Los Angeles. “It’s just concerning for us. That you would have a certain portion of the legislature that would play that kind of a game with children’s lives.”

One mother's story

When Devante Johnson was growing up in Houston, his family nickname was “Hollywood.” He would make small figurines and models out of papier-mâché and sell them to his friends. His mother, Tamika Scott, thought he would grow up to be an entrepreneur.

That was more than a decade ago. As a 10 year-old Devante was diagnosed with cancer. He battled the disease for years with treatment covered by CHIP. His mother says things were progressing well until paperwork mishaps and changes in eligibility rules caused him to go four months without coverage in 2006. He died seven months later.

“We went through a long road,” says Ms. Scott. “My fight is to help other families not go through the turmoil I had to go through.”

“We should be embarrassed to even have to look at [this] on the news,” she adds. “Other countries are looking at us as we fight about whether we should give kids health insurance.”

So what is her advice to parents whose children could lose their CHIP coverage in the next few months?

“Go and demand assistance. Do not wait,” she says. “Don’t put your kids’ lives in someone else’s hands.”

State search for funding

States are now searching for creative ways to keep their CHIP programs afloat. Agencies in Texas, which is required by state law to shut down its program if federal funding stops, are considering a Medicaid-related “accounting trick” to dig up some temporary funds. Oregon is spending $35 million in state funds to keep its program running for the nearly 140,000 children and pregnant women who use it.

In California, where more than 2 million children and pregnant women are enrolled, CHIP funding is rolled into MediCal, the state’s version of Medicaid, which means children insured through the program are guaranteed coverage until 2019. But while that provision has allowed the state to hold off sending warning letters to families, officials worry about the estimated $280 million hole that the end of CHIP could blow in the state budget

Natasha Jacobs' son went on CHIP in early 2016 while she was locked into a part-time teaching contract and her husband was unemployed.

“It was absolutely crucial. I don’t know what we would have done,” she says. “I imagine we would’ve paid out-of-pocket for our son and we would’ve given up coverage for ourselves.”

“We’re not lazy,” Jacobs adds. “I just happened to be stuck in this contract where I couldn’t add more hours, and he just couldn’t find work.”

'People work hard'

Indeed, there appears to be a growing perception that CHIP recipients are mooching off of taxpayers.

Sen. Orrin Hatch (R) of Utah, who helped create the program with Democratic Sen. Edward Kennedy in 1997, said in a speech last week on the Senate floor that while it has done a “terrific job for people who really need the help,” he has “a rough time wanting to spend billions and billions and trillions of dollars to help people who won’t help themselves, won’t lift a finger, and expect the federal government to do everything.”

Scott says she herself had that perception. She had always been self-reliant, even working multiple jobs through high school, but when she was first applying for government assistance she had to make three trips to the local office before she could bring herself to fill out the forms.

“To go in there asking for help … it was difficult, but it was something I as a mother had to do,” she says. “Now when I talk to people I’m more compassionate, I can empathize with them… I can see myself in their situation.”

“Everybody is not just looking for a handout,” she adds. “People work hard, but you never know what situation you’re going to fall into.”