Washington Co. family pushes to mandate coverage of congenital anomalies

The Powells did not initially have issues getting insurance to cover the procedures necessary to address 13-year-old Carter Powell’s cleft lip and palate.

The battles with their private health insurer began later in Carter’s life when he needed additional surgeries to ensure his lip and palate healed and grew properly.

Carter was 10-years-old when his parents, Jennifer and Arron Powell, scheduled his surgery to repair complications from his initial surgery on the palate at 12-months-old. The Washington County family had planned ahead and scheduled the procedure during school break, Jennifer Powell said.

But at the last minute, the family was told insurance would not cover the tissue needed for the procedure.

“It’s like, ‘Hey, I’m going to hire you for this job to build this house but I’m not going to give you any of the tools to build it,’” said Jennifer Powell, who lives in Granville.

Insurance eventually relented and agreed to cover the cost of the tissue as well as the procedure, but the Powells said it was not without persistence and fighting with the insurer.

“Over the years, we’ve faced numerous insurance denials for different aspects of (Carter’s) care - whether it be orthodontic, or portions of surgeries or elements of those surgeries,” Jennifer Powell said. “It’s taken a substantial amount of time to ultimately get coverage, and my belief is that it shouldn't be that difficult for those that are born with congenital abnormalities and defects.”

That’s why the Powells and others have joined the fight to pass Give Kids A Chance - Carter’s Law in New York state. The bill proposed in both state houses would mandate health insurance coverage for congenital abnormalities, specifically ensuring private insurers cover the medical and dental treatments as well as rehabilitative therapies that may be necessary over the years for a child born with a congenital anomaly like cleft lip and palate.

One in 38 babies born in New York are born with a congenital anomaly, according to the state Department of Health’s Bureau of Environmental and Occupational Epidemiology. While not every child will need surgery to address the anomaly, some do and still others may face future procedures and rehabilitative therapies to ensure a normal life, said Ash Patel, division chief of plastic surgery at Albany Medical Center Hospital.

The state Society of Plastic Surgeons, based in Albany, is championing the legislation.

Patel, who is Carter’s doctor, said surgeries and treatments beyond the initial procedures often are seen as “cosmetic” in nature and private insurers will deny it on that basis. But these additional procedures aren’t cosmetic, they’re medically necessary. As the child grows, he said, doctors dealing with someone with cleft lip and palate must make sure the jaw aligns, previous surgeries heal properly and speech and eating skills aren’t impacted.

“Children didn’t get asked to be born with these deformities,” Patel said. “What we’re trying to do specifically as plastic surgeons is try to restore something that is abnormal, restore it back to something that’s more normal.”

Assemblywoman Jo Anne Simon, D-Brooklyn, is sponsoring the bill in the Assembly. It’s those additional surgeries and services - like speech therapy - that Simon said the bill aims to ensure insurance companies cover.

“Those kinds of services are often denied by the insurance companies, even if they are in the policy, they will argue it’s elective,” she said. “It’s elective, but the child has a cleft palate and the child can’t swallow - that’s not really elective.”

It’s not that the procedures are not covered, either, Patel said. Children who receive health insurance through Medicaid do not face the same barriers as those with private insurers do, he said.

The Powells have faced initial denials by their insurance company, but eventually the insurance caved and paid out. It’s never without a fight, though, and the Powells want to pave the way for other families so they are not faced with the same struggles.

“I hope that if, and hopefully when, it’s passed that all this can go much more smoothly and faster so that people don’t have to be worrying about this and they can worry about other stuff,” Carter Powell said.

Sen. Anna Kaplan, D-Nassau, was also inspired by Carter’s story.

“He’s taken this big thing up on his own shoulders to advocate and make sure legislators are listening and holding companies responsible, and making sure these insurance companies are going to do the right thing and not deny these children who need to have these surgeries done,” said Kaplan, who is sponsoring the legislation in the Senate.

Lawmakers have yet to discuss the legislation, but the sponsors both expressed confidence that other state legislators would see the need and be inspired by Carter’s story.