I'm still shaking. Our insurance (employer plan) denied preauthorization for ABA therapy as "not medically necessary" - despite an autism diagnosis from a developmental pediatrician and her written referral for ABA.
Is this as outrageous as it feels? Is there any point fighting it, or do we start looking at paying out of pocket (which we truly cannot afford)?
It's outrageous AND it's normal AND it's very much worth fighting - a large share of denials get reversed on appeal. Insurers count on families giving up at the first no. Here's the playbook we used successfully:
1) Get the denial in writing, including the specific reason and the plan's own medical-necessity criteria for ABA. They must provide these.
2) Find out if your plan is fully insured or self-funded (ask HR, or check the plan documents). It matters: every state has some form of autism insurance mandate that applies to fully insured plans. Self-funded (ERISA) plans can be exempt from the state mandate - but many still cover ABA, and HR departments have real power here. More than one family has gotten coverage added just by escalating to HR with "our plan denies autism treatment."
3) File the internal appeal before the deadline (typically 180 days, but check your letter). Include: a letter of medical necessity from the diagnosing doctor, the treatment plan with specific goals, and language that mirrors the plan's own criteria. Point-by-point beats emotional - save the outrage for the group chat.
4) Ask your ABA provider to request a peer-to-peer review. A BCBA or physician talking to the insurer's reviewer flips a surprising number of these before the formal appeal even finishes.
5) If internal appeals fail, you're entitled to an external independent review - outside reviewers side with families often enough that insurers sometimes fold rather than go there. Fully insured plan? Your state insurance commissioner takes complaints too.
6) Log every call: date, name, reference number. The paper trail is the weapon.
Parallel track while you fight: look into your state's Medicaid waiver programs (separate thread worth reading here). Don't pay out of pocket until the appeals are exhausted - you have more leverage than it feels like right now.
Provider-side footnote to Sam's excellent answer: when your ABA provider writes the treatment plan for appeal, make sure it uses the insurer's own medical-necessity language and the right CPT codes (97151 for the assessment, 97153 for treatment). Mismatched paperwork is a boring, fixable, and shockingly common reason for denials. And yes - always request the peer-to-peer. I've seen it reverse denials in a single phone call.
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