‘I Don’t Know Why They’ve Waited.’ Families Stress Over Delay in Children’s Health Funding

Lauren Cooper first started to notice something was awry with her daughter Molly when she was seven months old, in 2003, and was unable to bear any weight on her legs. Alarmed, she and her husband Kevin Allen took her to a slew of doctors and neurologists, but a diagnosis evaded them. Finally, Cooper found something on the internet called Rett Syndrome, a rare neurological disorder found mainly in girls with symptoms that matched her daughters’. Molly not only tested positive for the syndrome, which affects language, breathing, coordination, and can produce seizures, but had one of the more severe mutations.

“I had a pretty good idea of what was going to be in the future for us,” Lauren Cooper recalled in an interview with TIME. “At thirteen months, I knew that she was gonna need ever-expanding care.”

That care has been paid for by the Children’s Health Insurance Program, or CHIP, which not only covers Molly and her two siblings but also subsidizes all of her medical supplies. But despite bipartisan support, the future of the federal and state program has been put on hold as Congress squabbles over how to pay for an extension. That’s put additional stress on families who rely on CHIP to keep their children healthy.

Today, Molly, now 14, is unable to walk or talk, and is fed through a gastrostomy tube. She suffers from seizures, and got septic shock last summer after scoliosis surgery. Although Lauren and Kevin, who live in Washington, D.C., went on to have two other children, 8-year-old Sophie and 5-year-old Rory, they altered their careers to fit their daughter’s needs; both are self employed, because it makes it easier to rush to the emergency room when Molly has a seizure that lasts longer than five minutes. (Kevin is an editorial photographer and Lauren runs her own cake-making company).

CHIP enabled the family to simultaneously keep Molly at home and remain financially stable, says Cooper. “It completely changed our lives,” Cooper said of program. “We were able to get things for Molly we could never have before, because everything is covered.”

Implemented in 1997, CHIP uses a combination of federal and state funding to insure children whose parents do not qualify for Medicaid, but are not necessarily covered under private insurance. The program, which covered 8.9 million children across all 50 states and the District of Columbia in fiscal year 2016, according to the Kaiser Foundation, has become a financial lifeline, not only for families like the Allen’s, who face exorbitant medical costs by chance, but for working class families with healthy children. But its future could be in jeopardy.

CHIP is essentially funded by money the federal government provides to the states, so Congress has to greenlight the spending through reauthorization. The program had been on a five-year reauthorization cycle, but in 2015, Congress reauthorized it for two years instead. Funding lapsed on September 30. Although Congress approved $2.85 billion in December to fund the program through March 31, a plan for funding a more permanent reauthorization has yet to reach a consensus.

“It’s definitely something that weighs on my mind every single day. I don’t feel secure,” said Cooper. “I’ve never even thought about [the possibility of losing funding] before. It always just seemed like something that was really well received. It was just something I didn’t think I’d worry about.”

CHIP started as a bipartisan initiative, spearheaded by the late Democratic Sen. Ted Kennedy and co-sponsored by Republican Sen. Orrin Hatch — who now chairs the finance committee, which ultimately determines funding mechanisms for the program — and has retained support on both sides of the aisle. The disagreements have stemmed from where the funding should come from; in November, for instance, House Democrats largely opposed a bill that would have reauthorized the program for five years, because the funding came from a portion of the Affordable Care Act that would otherwise subsidize public health programs. On Thursday, the nonpartisan Congressional Budget Office said that reauthorizing CHIP for 10 years would ultimately reduce the deficit by $6 billion over the next decade, largely because of unrelated changes in the tax reform bill President Trump signed. Consequently, Congressional aides on the House Energy and Commerce Committee and Senate finance committee — which have jurisdiction over funding mechanisms — have expressed optimism about reauthorization.

“In light of the latest analysis from CBO – largely due to the repeal of the individual mandate – Chairman Hatch is reviewing options with committee members to determine how best to move forward to ensure a long-term CHIP extension occurs before January 19,” Katie Niederee, Press Secretary for the U.S. Senate Finance Committee, wrote in an e-mail to TIME. “Chairman Hatch believes it is time to stop holding CHIP hostage and get this important program extended to ensure the families who rely on it get the care they need.”

But for families reliant on the program who are unfamiliar with Congressional budgetary processes, they are simply bewildered and anxious.

“The more time has gone on and the more they drag their feet on it, the closer we get to feeling like they won’t be funding it,” said Heather Richter, a Colorado mother with three children on CHIP whose son Ari, 5, has Type 1 diabetes. “The people … us, we don’t know. We’re just the ones getting caught up in this and having to wait around on people to make decisions.”

No states have halted the program yet, because leftover funds have enabled continuity, although some states have sent letters to recipients of the program warning insurance could lapse. (The Richters have received three of those). But on Jan. 5, the Center for Medicare and Medicaid Services, said funds for the program would actually begin to dry up in some states starting Jan. 19, although the center did not specify the exact states that would be impacted.

Parents are bracing themselves for the worst. Cooper says she has begun hoarding some of Molly’s supplies in case there is a lapse in coverage, and reusing supplies that are only intended for one-time use, like formula basins or feeding tube bags. “It’s not like i can go to the grocery store or go to the pharmacy and buy them. They are all prescribed, super-expensive things,” she explained. The family can apply for a Medicaid waiver for Molly should the program lapse, but there is no way to predict how long the wait will be.

Even though Richter received a call from Hatch assuring her CHIP would remain intact, she’s still on the edge of her seat. She is finishing her training to be a medical assistant, and if CHIP funding lapses, all of her family’s extra income would go towards her son’s medical supplies.

“His exact words [to me] were ‘it’s not easy to move an entire government body,’” Richter said of her phone call with the Senator. “I don’t know why they’ve waited until the very last minute to figure this out, and who knows what he means by that.”