Battle of Words & Numbers: Autism Insurance

There was no People First language spoken last Thursday at the second meeting of the Joint Study Committee on Autism Spectrum Disorder & Public Safety.

The first meeting, organized jointly by the Autism Society of North Carolina and Autism Speaks, clearly established a dire need for autism insurance coverage.  This last meeting was the industry response.  Testimonies were provided by the insurance industry and a member of the Chamber of Commerce to stop possible mandated coverage of autism in North Carolina.  Aside from the presentation with power point given by Oliver Wyman Actuary Consulting Inc. (a great member of what I call “Team Autism“- brought by the Autism Society of North Carolina), the other three testimonies (“Team Business“) were without the benefit of documentation (ex. citing their own actuarial report, but not providing it to the committee).

There was a wide disparity between the numbers reported by Team Autism and Team Business.  Members of the committee requested a copy of the report that Blue Cross Blue Shield of North Carolina cited.  Translating these numbers into actual increases in costs of insurance premiums also varied greatly.  Brows furrowed as legislators and committee public members attempted to understand the math.

As expected, Team Business came down hard and heavy against having the state mandate coverage of Autism Spectrum Disorder.  Lorri Unumb from Autism Speaks, also brought to the meeting by the Autism Society of North Carolina, ably refuted arguments put forth, such as concerns that “no codes existed” to file claims for treatments and interventions.

Each of the Team Business speakers prefaced the nay-saying by acknowledging how difficult autism can be for families, and then immediately launched into how bad autism insurance would be for everyone, ignoring these families altogether.  As with many issues that families affected by autism face, an acknowledgement of difficulties is as helpful as a cheap, generic band-aid.  It soon falls off.

Discussion of ABA (Applied Behavior Analysis) was grossly exaggerated.  Calling all behavioral interventions educational, not medical, along with describing them as 40 hours a week of intensive one-on-one drills with ill-trained college students teaching  “sitting still”, belittled all evidence-based interventions for individuals with autism.  Autism is not a learning disability.  Autism is the most pervasive of developmental disorders, affecting every area of a person’s life.

Any intervention when measured only by poor treatment examples, without fidelity to true implementation, would hardly credit any method.  ABA is a broad spectrum of interventions which includes, but is not limited to:  Discrete Trial Training, Positive Behavior Supports, Verbal Behavior Analysis, and antecedent-heavy methods such as Structured Teaching, birthed out of the long-respected UNC Division TEACCH.

The clincher was that Blue Cross Blue Shield does not consider ABA evidence-based!  Note all above methods have numerous peer-reviewed evidence in their favor.

Another “Oh, tell me you did not say that!” comment by Dr. Genie Komives, Vice President and Senior Medical Director for Blue Cross Blue Shield of NC:  She warned that the prevalence of ASD would go up because parents would more likely seek an ASD diagnosis for their child if they knew comprehensive services existed!  She also noted autism was certainly an important issue for society, but one that the insurance industry should not have to shoulder.

Both insurance providers stated that they indeed already cover autism in their plans:  diagnostic assessment, prescription psycho-pharmaceuticals, and speech and occupational therapies.  In other words, they’ll give your child the label of autism and some drugs to manage their behavior, provide up to 30 30-minute speech sessions or a total combination of 30 speech & occupational therapy sessions and then good luck to you.

Services and supports are being cut by Health & Human Services.  Education of children with autism continues to flounder in every county and state.  Now insurance providers attempt to block coverage of what most certainly is a civil rights issue.  There appears to be no place to turn to get our children the comprehensive help they need.

The next meeting on autism insurance coverage will be scheduled soon.  Subscribe to meeting notices to receive email updates of the schedule.  Don’t leave your state’s decision-making process for what directly impacts your child up to a roomful of people.  Come to the meetings.  The Autism Society of North Carolina staff are there to greet you and answer questions.

Autism insurance coverage is heating up in North Carolina.  We need you to stay involved more than ever.  We need you to stand up for your child.  We need you.

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  1. bensmyson says:

    “She warned that the prevalence of ASD would go up because parents would more likely seek an ASD diagnosis for their child if they knew comprehensive services existed!”


    How about that we seek an understanding about why our child is developmentally delayed? How about we want to know why our child stopped talking, spins around in circles, stims, stops noticing anyone else exists? How about we seek help with our own difficulties in controlling an out of control kid? How about the diagnosis is the knife to the heart of someone with dreams that their child will one day fall in love, hold a job and marry. How about we accept a diagnosis because we have no choice, it is what it is. How about walking a mile in our shoes?

    Is there a way to avoid a diagnosis?

    Hopefully BCBS’s senior medical director of the non-profit organization will use some of the millions she collects as salary to find redemption.

  2. Vsheehan says:

    Great Blogg Good luck.

  3. Kristine says:

    Exactly what bensmyson said. Exactly.

    Thanks for reporting on the meeting.

  4. Amy Perry says:

    And if the insurance industry provided better coverage for cancer would people be more likely to seek that diagnosis as well? I can\’t believe the things they are saying. Not evidence based? Or not profitable?

  5. bensmyson says:

    \”And if the insurance industry provided better coverage for cancer would people be more likely to seek that diagnosis as well? \’


  6. Chris says:

    Sorry, I couldn\’t focus much beyond the statement that \”Blue Cross Blue Shield does not consider ABA evidence-based!\” That answers it all, everyone, we\’ve been mistreating these kids all along…we need Evidence-Based techniques such as resource-less school systems that can\’t meet goals of IEP\’s, limited and pre-measured Speech Therapy without care for potential and progress, and waiting lists for services that age your child out of any chance of receiving \”early\” interventions. I must have missed all of the peer reviewed articles supporting those practices.

  7. […] the actuarial presentation arranged by ASNC and Autism Speaks, the study committee’s second meeting was focused on the industry […]

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