Autism Law Summit 2023: Appeals, Parity & ABA Access

Location: Milwaukee, WI Recap by: Jim Hamilton

The Autism Law Summit is an independent annual conference where parents, providers, attorneys, and regulators spend three days on the practical law of getting autism services covered. Jim attends every year, and he has used what he learned there in his own appeals and independent external reviews (IROs) to protect his son's medically necessary ABA treatment. These are the takeaways most useful to our families. The official session decks from the summit library are attached at the bottom of this page and linked throughout.

Challenging denials

• If a denial cites the insurer's internal medical-necessity criteria, ask for the criteria in writing, and how they were created. Courts have held that a denied member is entitled to see the insurer's internal review criteria, and that proprietary guidelines are not the "generally accepted standards of care," a point raised repeatedly at the summit's legal sessions.
• A denial that ignores your treating providers' records and offers only boilerplate reasoning is challengeable: reviewers must actually engage with the substance of the record, a recurring theme in the appeals cases discussed at the summit.
• Wit v. United Behavioral Health, a long-running case that has continued to evolve on appeal, stands behind the core principle: the district court found the payer "violated obligations by using guidelines more restrictive than generally accepted standards and prioritizing cost savings over members interests" (standards panel deck, slide 11). The related points argued at the summit, that maintaining skills is a valid goal of treatment and that "lack of progress" objections require individualized answers rather than automatic cuts, come from the standards-of-care and appeals sessions more broadly.
• The court in Wit also noted multiple sources for generally accepted standards: peer-reviewed studies, consensus guidelines from professional organizations, and government agency materials. For ABA, the CASP practice guidelines are the most prominent of those consensus guidelines. Cite the edition you rely on (the third edition is current); insurers will litigate which edition applies.
• The strongest statutory language shown all weekend is California's SB 855 rule: an insurer "shall not apply different, additional, conflicting, or more restrictive utilization review criteria" than those in nonprofit professional association guidelines, and the implementing regulation names the Council of Autism Service Providers by name (standards panel, slide 17). That is state law in California, not Kansas or Missouri, but it is persuasive material for any appeal about whose criteria govern, and a model to ask our own legislators about.
• The 2023 Playbook workshop repeated the rule that frames every appeal: "Anything but a yes, is a no." Anything that differs from the request, in dosage, setting, duration, goals, or unit caps, is an adverse determination you can appeal. The free Playbook download remains the most directly usable tool a parent can take from the summit: a checklist plus model appeal letters, step by step.
• Massachusetts showed a third avenue beyond appeals and complaints: its 2022 law created a state commission to establish "a common set of criteria for providers and payers to use in making medical necessity determinations for behavioral health treatment" (Massachusetts parity deck, slide 1). CASP is actively asking advocates in other states to copy it. The same session carried the numbers behind profound autism: roughly 1 in 4 autistic people, yet only about 6% of autism research studies include them, which matters when an insurer cites "insufficient evidence" against exactly those children.

"Get it from the school" is not a legal answer

• ABA is a medical treatment for autism; what schools provide under an IEP is an educational service. One does not replace the other, and courts have rejected blanket school-setting exclusions by insurers (Burke v. Independence Blue Cross). That case is about the insurer's obligation; the school district's obligations run on a separate track.
• A helpful parity framing from the sessions: "Would I be told to get knee surgery from my school?" A restriction applied only to a mental-health benefit is exactly what federal parity law prohibits.
• The U.S. Department of Labor's parity report to Congress documents a real enforcement action where a plan was required to drop its rule that school services be exhausted before autism services would be covered: useful, citable precedent for appeals.
• Under Medicaid's EPSDT benefit, the state must cover medically necessary treatment for children and cannot hand that duty to schools. The practical scope, though, lives in your state's own Medicaid policy manual. Arizona's is the model: its policy covers ABA where medically necessary at "all ages" and "all locations" (Arizona deck, slide 5), proof that a state Medicaid program can decline to restrict ABA by setting or age.
• The ADA and Section 504 sessions covered an emerging approach: requesting access to medically necessary care during the school day as a disability accommodation. The regulations put the burden on the district, which must prove the accommodation "would fundamentally alter the nature of the program or constitute an undue burden" (28 C.F.R. § 35.164), and safety refusals "must be based on actual risks and not on mere speculation" (ADA schools deck, slides 13, 23).
• An honest caution from the litigator who presented that session, though: in practice, "that's not how Courts are deciding these cases: If the school can prove it can offer 'ABA' they win" (slide 24). Districts gain traction with elastic phrases like "ABA-trained" staff or services "based in ABA principals," and the leading favorable decision was a pleading-stage ruling, not a trial win. If you go this route, document the specific service your child needs, who would deliver it and at what credential level, that the district was on notice, and that your funded provider is ready at no cost to the district. And demand the same specifics from the district about what its "ABA" actually is.

Coding and units

• The ABA Coding Coalition publishes free coding guidance and a Model Coverage Policy, and takes questions through the portal at abacodes.org. Its bottom line for appeals: "Determinations of medical necessity must not be based on hard, fixed, or arbitrary limits, but should be individualized and based on generally accepted standards of care" (Coding Coalition deck, slide 18). Keep one thing straight about the Model Coverage Policy: it is a model, the policy its authors want plans to adopt, not an enforceable policy in itself. In an appeal it is persuasive material, not binding authority.
• "Medically Unlikely Edits" (daily unit caps) are "not meant to be used as hard caps" (slide 24). The Coalition advocates for payers to use Medicaid rather than Medicare MUE values as more appropriate for ABA.
• The Coalition's definition of destructive behavior is broader than most parents assume: self-injury, aggression, property destruction, pica, and elopement, plus behaviors with high-risk medical consequences, which in practice reaches severe sleep, feeding, and medical-cooperation problems. That is direct ammunition against a "not severe enough" denial.
• If a plan denies the supervising analyst's time (CPT 97155) as duplicative of the technician's time (97153), it is contradicting the AMA's own guidance: "The AMA CPT book includes no exclusionary parentheticals indicating that these services may not be reported concurrently" (slide 37).
• The Coalition has been working directly with Kansas Medicaid on its ABA policy, so KanCare families are not shouting into the void when they cite this material.

Where to file an insurance complaint

• At the regulators panel, a question from our group surfaced a practical rule many families miss: jurisdiction usually follows where the policy was issued (often the state of the employer's headquarters), not where your family lives. Check your insurance card, and when in doubt, file in both states and say so.
• Regulators are not clinicians. When you write a complaint, explain the situation from first principles and assume no background knowledge of autism or ABA.

Autism and the criminal legal system

• The session from Decriminalize Developmental Disability (D3) deserves more than a resource line. People with intellectual and developmental disabilities have up to seven times more contacts with law enforcement over their lifetimes than the general population, with no evidence they commit crimes at a higher rate (criminal legal system deck, slide 7). The presenters called the transition from adolescence to adulthood "the next bow wave."
• The vocabulary a family needs on day one of a police encounter: "counterfeit deviance," behavior that looks deviant but comes from a lack of social learning and supports rather than a deviant mindset (slide 9), and the ADA Title II rule that treating a disabled person identically to everyone else can itself be discriminatory (slide 10).
• Virginia has enacted a package of laws aimed at keeping people with developmental disabilities out of the criminal legal system, including a specialized alert system so that a mental health crisis call gets a trained response rather than a standard patrol response. The session's deeper point for parents: teach personal safety, abuse recognition and reporting, interactions with authority, and self-advocacy as deliberately as academics.

Adult living and long-term supports

• A session from 29 Acres, a family-founded residential community in Texas, carried the most portable checklist of the weekend: the federal HCBS Settings Rule entitles an adult on a Medicaid waiver to a real lease, privacy with lockable doors, choice of roommates, control of their own schedule "including access to food at any time," and visitors at any time (29 Acres deck, slide 24). Measure any adult placement against that list.
• Any restriction of those rights, even a camera, "must be supported by a specific assessed need and justified in the Person-Centered Support Plan" (slide 26). Parents can demand to see that documentation.
• Their model separates the real estate from the support services so residents keep provider choice and the community stays eligible for waiver funding, and their warning about underfunded state reimbursement rates explains why families of the highest-need adults keep hearing "we don't have an opening."

Free resources highlighted at the summit

• The Playbook: the free step-by-step authorization and appeals guide, with model letters.
• Autism Legal Resource Center: resource library organized by topic and by state, plus webinars on parity and working with your regulator.
• ABA Coding Coalition: coding FAQs and the Model Coverage Policy.
• COPAA: the Council of Parent Attorneys and Advocates, for special-education advocacy.
• D3 - Decriminalize Developmental Disability: legal resources and data from the criminal legal system session.
• Kennedy Forum and dontdenyme.org: parity advocacy help, including the disclosure request route.

These are one parent's notes from a professional conference, shared parent to parent and not legal advice; sessions are cited rather than individual speakers where remarks were informal. 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.