Autism Law Summit 2022: The Playbook & Insurance Advocacy

Recap by: Jim Hamilton

The Autism Law Summit is an independent annual two-day conference for ABA practitioners, attorneys, regulators, and lobbyists. 2022 was the 16th annual summit, and I was one of a handful of parents there among 300 BCBAs and ABA billing specialists. The focus was on correctly filing insurance authorizations and successfully appealing denials, plus the year's changes in federal, state, and case law that make ABA advocacy easier. While the conference is specific to autism, most of the material is generally applicable to all insurance advocacy. The official session decks from the summit library are attached at the bottom of this page and linked throughout.

The Playbook

• The Playbook is an incredibly detailed guide to dealing with private insurance companies, built by a team of providers, advocates, attorneys, and regulatory specialists over more than a year of working meetings. It is free: a 4-page checklist for medical necessity denials plus roughly 100 pages of detail, downloadable from the summit site.
• The table of contents is linked and the PDF is searchable. A copy is available on this site with the Appealing Insurance Denials session notes.
• The Playbook is deliberately about process, not clinical argument. As the plenary deck puts it, it "will not tell you how to write a treatment plan" or "how to clinically refute common denials" (p. 7). You still have to know your own evidence.
• Kristin Jacobson (Autism Deserves Equal Coverage), one of The Playbook's authors, told the room that over the prior two years she had handled dozens of denials for ABA services in a school setting, and said she had won every one of them.
• A point from the plenary that changes who signs what: "The contract is between the member/subscriber and the insurance company (or employer), NOT the provider" (p. 14). The provider can act as an authorized representative, but the legal protections belong to the member. That is why the parent's own signature on the authorized-representative form matters, and why the parent's own request carries weight the clinic's does not.

Handling a denial: lessons from the appeals sessions

• The rule of the whole appeals workshop: "Anything but a yes, is a no" (p. 8). Any modification of your request, in hours, setting, duration, or goals, is an adverse determination, and by law it must be given to you in writing, with the reason, within the required timeline.
• There are deadlines to file appeals. Before anything else, pull your plan's timely-filing window from the plan documents and calendar it; a strong appeal filed after the deadline will not be heard. Timely filing is one of the six things the billing workshop says to extract from every payer policy (p. 27).
• Never negotiate medical necessity on a peer-to-peer phone call. End the call by asking, "To what address will you send my written denial?" And if you have to fight to get the determination in writing, that fight is itself a violation you can put in the appeal letter (workshop, p. 11).
• You can accept partial hours and still appeal: "Yes, I'll take the offered hours, and please send me a written denial for the services you are refusing."
• First check what kind of denial you actually have. The billing workshop splits denials into administrative, clinical, and policy categories (p. 33). A paperwork code on the EOB is not a medical-necessity fight, and the fastest first step is often to read the insurer's own published ABA coverage policy rather than to start an appeal.
• Ask HR for the full Summary Plan Description, not the short benefits summary. The real document is far longer and must state what is covered, what requires pre-authorization, and how claims and appeals work.
• Build a complete appeal packet (workshop, p. 14): the insurer's own member appeal form, an authorized-representative form, an appeal letter citing the DSM-5 diagnosis, the diagnostic evaluation, the MHPAEA disclosure request form, copies of the original authorization submission and the written adverse determination, generally accepted standards of care such as the CASP practice guidelines, supporting peer-reviewed research, and any procedural violations of state law or federal parity law.
• One caution on the diagnostic evaluation: supply it, but do not concede that the insurer may dictate its form. A requirement that the diagnosis come from a particular specialist or a particular instrument is itself a treatment limitation you can challenge.
• Use the phrase "concurrent review" rather than "pre-authorization" where it applies, and state in the appeal letter that continued care is being sought. Blown insurer deadlines can qualify you for external review under "deemed exhaustion."
• Insurers' proprietary review criteria are not generally accepted standards of care for ABA. Many states specifically name the CASP guidelines in their laws as the generally accepted standards of care; California is one example. The rest require care to meet generally accepted standards, and generally accepted means accepted by practitioners in the field, not by insurance companies looking to limit coverage. Still, be ready to defend whichever standard you cite; the workshop's own challenge was, "There are CASP guidelines and other accepted standards of practice regarding ABA, why is yours better?" (p. 21). Know what evidence you are relying on and why.
• If the letter cites proprietary criteria, ask for them by name: "Please provide the InterQual/MCG criteria used (as referenced in your letter) and how the reviewer applied each element to this case" (workshop, p. 28).
• The workshop's most reusable page is a rebuttal table for progress-based denials (p. 18), including the trap that catches families both ways: "too much progress" means a quick responder with significant upside, and "too little progress" means a slow responder who can still make meaningful, medically necessary gains. The instruction to providers on p. 23 deserves framing: "DO NOT change your recommendation based on this decision."
• A speed presentation on conflicts of interest turned that same ethics point toward providers: "If the provider determines treatment based upon what the health plan will cover, instead of what the consumer needs and wants, they are putting their financial interest ahead of their contract with their consumer" (p. 3). Ask your BCBA directly whether the submitted hours are the clinically indicated hours or the hours expected to be approved. The same deck carries a one-page table of treatment intensity in the landmark ABA studies, most clustering between 35 and 40 hours per week with 4 to 8 hours of weekly parent training, which is exactly the citation you need when the plan offers 10.

Parity law is your friend

• The federal Mental Health Parity and Addiction Equity Act (MHPAEA) bars limits on mental-health benefits that are more restrictive than the limits on medical/surgical benefits. Because it is federal law, it applies in Kansas and Missouri too.
• One precondition I had half-right: parity law does not require a plan to cover behavioral health at all. It requires that if the plan covers it, the coverage must be comparable to medical/surgical coverage. Check that your plan is covered by MHPAEA before building an appeal on it; the free CASP Autism Insurance Appeals Guide has a comprehensive list.
• Hour caps and age caps on autism benefits are parity red flags: a treatment limitation is only permissible if a comparable limitation applies on the medical/surgical side. The appeals workshop went further: "Age limits, discriminatory. Even if they're in state law" (p. 52). Watch for soft caps too, the verbal "you're never going to get more than 20 hours, so don't bother asking" that never shows up in writing.
• Two different parity documents exist, and I conflated them at first. The member-facing one is the MHPAEA Disclosure Template: submit it with your appeal, and the plan has 30 days to respond. The comparative analysis of non-quantitative treatment limitations is what plans must furnish to regulators on request. If the plan ignores your disclosure request for 30 days, take that silence to your regulator, and dontdenyme.org (Kennedy Forum) can help.
• How badly are plans complying? The 2022 MHPAEA Report to Congress, quoted in the plenary (p. 24): regulators requested parity analyses from 156 plans covering more than 200 unique limitations. Zero of the analyses were sufficient, and of the 48 limitations regulators could evaluate anyway, 100% were violations.
• State autism mandates are a separate source of rights for fully insured plans, and they can beat the insurer's policy. The plenary's example: in Maryland, "services cannot be denied just because they are delivered in a school" (p. 18). Mandates typically cover speech, OT, and PT, not just ABA. Look up your state at Autism Speaks' state benefit plans page.

Know your regulator

• Self-funded employer plans are regulated by the U.S. Department of Labor. Fully insured plans are regulated by your state's Department of Insurance, and state mandates apply. Medicaid plans answer to CMS and the state Medicaid agency, and in managed care the specific plan you are assigned determines the policy and the forms. Military families are a separate category again: TRICARE runs under federal regulations with its own manuals and appeal path. The Autism Legal Resource Center's regulatory resources page can help you find yours.
• File your complaint even if it feels small. Regulators define "pattern" differently, which is exactly why you keep providing data points; enforcement takes a long time, but restitution can go back many years (plenary, p. 27).
• A speed presentation on Texas Medicaid was a useful warning about the difference between winning a benefit and getting it delivered: ten years of advocacy produced an ABA benefit, and then families ran into managed care fragmentation, prior-authorization windows measured in days, and published state guidance that was out of date. In Medicaid managed care the criteria usually are not hidden at all; the practical problem is published rules that are inconsistently applied.
• If your child may ever need a Medicaid home and community-based services waiver, get on the waiting list now. The waitlist warning was repeated all weekend: "Wait lists are devastating. Make sure you get on the wait list now."
• For military families, the TRICARE session also produced the most broadly useful checklist of the weekend, from the behavior analyst ethics code (standard 3.16): every provider transition should come with an individualized transition plan, a copy for you, an explanation of it, coordination with your next provider, and a discharge summary reviewed with you. Ask for all five by name whenever you change providers, military or not.

Special education due process: Kansas is a two-tier state

• The parent spotlight session followed two parents through changing their state's special education due process law, and it surfaced something every Kansas family should know: Kansas is one of only six two-tier states (p. 8). If you lose a due process hearing here, you must appeal to a state review officer before any court will hear the case, which adds time and cost to an already long road.
• Their honest accounting is worth reading before you start down the due process path: a case that dragged over four years and roughly $300,000 in legal fees and therapy costs. "Families cannot afford to go to this expense. Often, they just give in and give up" (p. 26). It is also a worked example of the alternative: they spent six years getting the law itself changed.

Beyond insurance: employment, transition, and adult services

• One full workshop track had nothing to do with insurance. The employment workshop covered Vocational Rehabilitation and Pre-Employment Transition Services (Pre-ETS): every state must reserve 15% of its federal VR grant for Pre-ETS, and "all students with a disability are eligible to receive Pre-ETS" (p. 9), whether or not they ever apply for full VR services. If you have a teenager, this is one of the highest-value unclaimed benefits out there.
• The numbers that make the case for starting transition planning early: nearly half of 25-year-olds with autism have never held a paying job, and 80% of adults with autism live with their aging parents (p. 23).
• A speed presentation from Massachusetts covered a state pilot paying for ABA for adults over 21 inside Medicaid day habilitation programs, a reminder that the age cliff is a policy choice, not a law of nature.

Severe behavior and crisis prevention

• The Severe Autism Workshop included a crisis prevention module whose central rule belongs in every school and clinic meeting: "Staff should always use the least intrusive procedure possible" (p. 26), and any restraint should be treated as a failure of planning rather than a tool. "Crisis should only happen once, after that we should be prepared" (p. 27).
• Counterintuitive but cited: verbal de-escalation, though frequently taught, "may not be the best first step" and for some children is itself a triggering event (p. 24). Prevention looks like distractors, personal space, environmental sensitivity, honored requests, and offered choices (p. 21).
• The workshop's policy briefing is also where I first understood the named federal decision behind the proprietary-criteria fight: a court found a major payer violated its fiduciary duty by using internal medical-necessity criteria that overweighted acute symptoms while disregarding chronic conditions, and required it to use externally developed criteria instead. That is the legal spine under "internal criteria are not the standard of care."

These are one parent's notes from a professional conference, shared parent to parent and not legal advice; speakers are credited where their remarks were public. The official session decks below come from the Autism Legal Resource Center library, where they are posted publicly. Reach out to Jim through the contact form for more information about the Autism Law Summit or help finding any of these resources.