We all (unfortunately) know that getting your care covered by insurance is anything but simple.
And for families with children with autism spectrum disorder, insurers like Trustmark Health Benefits make the process almost unbearable. Such was the case for Amparo and Victor Rios and their young son Sebastian, who they suspected to have autism spectrum disorder.
For context: the only ways to diagnose autism in children are through extensive interviews with parents, caregivers, and teachers, as well as behavioral evaluations and one-on-one sessions. And for autism, these needs “may require out-of-pocket payments as insurance companies impose stricter coverage standards. Parents can wait months for appointments with a developmental pediatrician or other specialists,” according to an article from Kaiser Health News.
Once autism is finally diagnosed, treatment — including early intervention, medications, speech therapy, occupational therapy, and nutritional therapy — takes time, money, and . . . sufficient health coverage.
According to the article, the Rios family were forced to wait more than three months for Sebastian’s test results before he could officially be diagnosed with autism. In the interim, his symptoms continued to worsen.
Because there is no standardized test to diagnose autism, providers may utilize a variety of methods. But when the Rioses went to switch therapists because their son’s needs weren’t met by one therapist, their insurance plan refused to pay for his care. The reason? “Sebastian needed a medical diagnosis of autism from a provider the plan considered a qualified clinician,” per the article.
The diagnosis they were waiting on in the first place. But the barriers to Sebastian’s care didn’t stop there.
Fast-track two years later, after Sebastian was finally diagnosed with autism by a specialist, and the Rioses begin getting notifications from their insurer that his care wouldn’t be covered, because it wasn’t medically necessary. Why? The therapist who diagnosed Sebastian didn’t use the precise test mandated by the carrier.
Once again, insurers use endless layers of rules, forms and prior authorizations to dictate patient care.
Even after the ABA therapist sent clinical documentation to the insurer, confirming Sebastian’s need for it, the health plan still refused. The Rios family is now facing $11,000 in medical bills. Despite appealing the denial, the insurer wouldn’t budge.
The Rios family is just one example of the many families who are living with a complex condition.
Payors want to simplify care down to a list of binary options: emergency, non-emergency, covered, not covered, tests or no tests, medically necessary, not medically necessary — but the reality is, it just doesn’t work like that.
This isn’t an algorithm. These are real people — children! — with real, nuanced medical needs. And these are trained clinicians, trying to provide them with care. It’s unfortunate that insurers have turned every step of the care process into a series of complex hoops to jump through.
When patients suffer while payors squeeze every penny out of the system that they possibly can, the system is clearly broken.
