Melissa Dickison has had to be a de-facto lawyer for much of her 29-year-old son’s life.
Jacob was diagnosed with a genetic disorder when he was a 1-year-old, first having seizures and then showing developmental delays. He now has advanced autism, and mental delay, his mother said. When he was 6, he gained access to Applied Behavior Analysis therapy. He started dressing himself, became potty trained, stopped running away, and was less aggressive. Dickison said it was a “life-changing treatment.”
But it’s been difficult to maintain the level of ABA therapy he needs. Jacob relies on his father’s private health insurances to cover ABA therapy, and those insurers often push back about the necessity of his treatment.
“We’re terrified that they’re going to take this all away, and that we can’t have it any other way because we can’t afford it,” said Dickison.
Through the family’s move from Oregon, to Rhode Island, and settling in Massachusetts, they’ve dealt with hurdles around his care and health coverage. Between 2014 to 2022, the family health with ten claim denials from different private insurers; Harvard Pilgrim Health Care, United Behavioral Health, a subsidiary of United Healthcare, and United Behavioral Health’s own subdivision called Optum, the hodgepodge of groups that denied Jacob a medical claim in 2023, the last time the family appealed. The denials are always during the pre-authorization process, when an insurer considers whether care is necessary.
Dickison said insurers would mention that Jacob had enough services, he’d spent too much time in ABA, that he wasn’t benefiting, or that other services were available. At an earlier point, Jacob was denied coverage because the insurer mistook him for another person.
In the 2023 denial, an Optum representative didn’t consult Jacob’s treatment plan, according to a successful 33-page appeal document GBH News reviewed. During the appeal process, his family and providers wrote letters about medical necessity, guardianship letters from court, get medical records, and create customized reports of progress.
“Jacob may only have a month or two of uninterrupted treatment before OPTUM again issues the next denial, as has been their consistent routine,” his father and Wells Wilkinson, the family’s attorney at Health Law Advocates wrote. “This is especially troubling because OPTUM’s denials have regularly sought to effectively terminate Jacob’s access to ABA therapy – the most widely accepted treatment for autism, and the cornerstone of nearly every treatment plan for persons with autism.”
UnitedHealth Group and its insurance products under UnitedHealthcare and Optum were the subject of a national investigation from ProPublica that focused on the groups limiting access to ABA for children with autism.
“Having these people who don’t really know Jacob tell me that they think he doesn’t need this is also pretty incredulous to me as well. How can they know that without ever meeting him? Also, can they override the treatment decisions of his doctor?” Dickison said.
Dickison’s family is one of many who’ve had to deal with an insurer denying a medical claim — and potentially leaving them on the hook for thousands of dollars.
“Every six months, we gird ourselves, we put together our paperwork and we wait for them to say, Sorry, you can’t have this,” she said, adding that the family has been lucky the past couple years.
The Massachusetts Office of Patient Protection collects annual data from each health insurance carrier. Records show that in 2022, the most recent year for which data is available, there were over 13,000 internal appeal requests to insurers in the state. Of those, 54% were disputes about medical necessity.
Appeals are difficult. The Office of Patient Protection found that less than half of all appeals in 2022 were resolved in favor of the consumer. And patients only have so long to even pursue an appeal, because they lose the right to do so 180 days after a denial.
“We’ve had consumers who didn’t even know that something had been denied because the only notice they received was some kind of electronic notice landing on that consumer portal,” Wilkinson said.
Other challenges are denials coming only in English when patients speak another language, or being “unduly complicated,” Wilkinson added.
Many people don’t even know they can appeal a denied claim.
Sara Collins, senior scholar and vice president at the Commonwealth Fund, an independent organization that studies health policy, said only 43% of people nationwide denied coverage of doctor-recommended care challenged those denials.
Dickison didn’t know she could appeal a denial until 2017. Since then, she’s gotten pro bono legal assistance from Wilkinson.
Their repeated pushback means Jacob still has coverage for ABA therapy, but it’s gone down from the recommended 35 hours a week to 25.
“They never knew at any point whether they were going to lose an appeal through some, you know, through some mistake,” Wilkinson said.
For low-income patients who have debt as a result of denied claims, there are some options for help. Under federal law, nonprofit hospitals have to publicize their financial assistance programs. Collins said there’s no requirement of what those programs look like, or enforcement, but it’s an option.
Richard Silveria, chief financial officer for Cape Cod Healthcare, a nonprofit hospital provider believes there are a multitude of options for patients.
“If patients have large medical bills, we’'l work with them to qualify for any number of programs,” he said. Those include Medicaid programs with a look-back period, and state Connector Care plans, both of which have income restrictions. Silveria said his hospital network also offers help getting access to the state’s Health Safety Net, which can cover full or partial care. “We actually engage a vendor that actually go out and meet people at their home and get and get the application filled out,” he said.
Those programs have varying eligibility requirements, but most are for people with lower incomes.
”There’s not a lot of resources for folks who are over at that kind of, you know, middle income, but then end up having insurance denials or medical debt,” said Wilkinson.
