The Day We Lose Our Son’s ACA Coverage
“This will be the last time you see Taylor or Kelsey, do you understand what that means?”
This moment has played out in my mind since the moment Donald Trump was elected. Having to explain to our 4-year-old son with autism that he will never see his therapists Taylor or Kelsey again. These warriors who have been a part of his life the last two years, spending countless hours each week teaching him, playing with him, caring for him. They are in many ways extensions of his parents.
“This will be the last time you see Taylor or Kelsey, do you understand what that means?”
It gives me chills.
ABA Therapy is currently the only universally accepted treatment for autism. Other treatments are either extremely controversial or rooted in pseudoscience. ABA Therapy is also routinely denied by insurance companies.
The insurance I receive through my work stated that while they do cover autism, they won’t cover ABA therapy. Or speech therapy. Or any therapy. It would be like having your insurance company tell you they cover cancer, just not surgery or chemo.
My wife’s insurance was much more cold-blooded. While they wouldn’t cover ABA therapy, they would cover his speech therapy, until they learned he had autism at which point they began denying our claims. A child with a hearing impairment, in their judgment, deserves to learn how to speak. A child with autism does not.
It wasn’t until we were able to purchase his plan via the Affordable Care Act that we were provided any kind of coverage for autism services. Our plan isn’t subsidized. We gladly pay our full premium to allow him to participate in one of the few plans across the country which, because of the way they’re regulated, require autism coverage.
While the primary talking points surrounding Obamacare focus on the subsidies, the requirement to cover pre-existing conditions, or the ability to stay on a parent’s plan until 26, there are many other tiny little details buried within the ACA which required insurance companies to step up and quit denying specific conditions. Treatments for autism, substance abuse, mental health, women’s health, and even more specific conditions such as black lung, as well as many others, were suddenly available to consumers who had been told by their insurance companies, in no uncertain terms, that they wouldn’t be covered.
ABA Therapy is not cheap. In relation to other treatments that insurance covers, i.e. surgery, chemo, hospitalization, etc. the cost is small. But at $100 dollars an hour the price tag is much too prohibitive for your average American to afford. Most children on the spectrum require as many as 15–20 hours per week. 15 hours x $100 x 52 weeks a year = you’d better be a Kardashian to afford.
The moment we lose Charlie’s ACA plan, we’ll lose his therapy. Charlie’s therapists will be reassigned to other cases. There will have to be a “last” session with each. And we’ll need to explain it to him so that he understands the full magnitude.
Charlie will require a lot of preparation for that moment. We’ll need to start weeks out letting him know to enjoy his time with Taylor and Kelsey. To hug them extra hard when they leave each day. To appreciate the time they spend building their little couch fort that becomes an impromptu schoolhouse where they teach him about emotions, and numbers, and how to put on his shoes.
And then the day of tears will come. Charlie will need to say goodbye. Goodbye to his treatment. Goodbye to his hope of a better life. Goodbye to the women who were like mothers to him.
“This will be the last time you see Taylor or Kelsey, do you understand what that means?”
Whether he pleads with them to stay with tears in his eyes, or remains quiet and spends the following weeks expressing his grief by not sleeping, or throwing endless tantrums, or stimming until he’s exhausted, it won’t matter. He’ll know he’s lost people he loves. And we’ll know he understands what that means.
If the day comes that we lose his ACA coverage, this will be the last time Charlie sees Taylor or Kelsey. Do you understand what that means?
