Our Autism Story – Day 4 – “How Are We Going to Pay for This?”
So…we received an autism diagnoses and were told the best thing we could do is ABA therapy. Small problem…many self-funded employer insurance plans (including Kelly’s current employer at the time) do NOT cover ABA. Even bigger problem…ABA is expensive! At some point we estimated the cost of Brahm’s ABA was in the range of several hundred thousand dollars PER YEAR.
So, how the heck are we going to pay for this? If Kelly quit her job and “lost” her employer coverage, we could immediately get Brahm an individual ACA (Obamacare) policy that was mandated to cover ABA. So, what would you do? We did what was necessary to get our big man the coverage he needed to start the treatment he needed.
Brahm is also currently on Medicaid (via disability). At the time he was diagnosed, there was an 18-24 month wait for kids with autism to be approved for the autism waiver portion of Medicaid. That has since changed (thank goodness!). Getting Brahm approved for Medicaid was a long process and it took an appeal process or two (could be a post by itself!). Every year we need to get him recertified through the state and it requires a lot of paperwork, time, and effort to keep him covered.
However, there are a ton of services / things that are not covered by any insurance / Medicaid that we pay out of pocket – things like psychiatrists / physicians that do not accept any form of insurance, chewys, fidgets, heavy blankets and vests, compression clothing, therapy swings / devices, and ID bracelets. And then there are other money suckers like knowing Brahm will only last 5-60 minutes in public, but we still pay the full day admission price to events and activities (we LOVE annual membership passes for this reason!). We are super lucky we can afford to pay for these things out of pocket, but that’s not the case for all autism families.
Long story short, autism is expensive!!!