Expanded Insurance Coverage for Diagnoses and Treatments of Autism: A Policy Overview

 By Nick Malcuit



            Expanding insurance coverage for diagnosing and treating autism is both an advocacy movement and social policy. Since autism has been a part of my life for well over ten years; I have personally seen the financial impact not only on our family but others as well. Many people believe problems related to autism and its epidemic growth in America has created the need for government to act on behalf of families and look at the political as well as financial issues as a pathway to public policy changes. We need to see it on a social level contrary to the views of many, that autism is an educational or behavioral problem to be dealt with by school districts and educators. The social impact as well as the genetic, clinical and environmental components of autism has made it worthy of advocacy on a similar scale of the civil rights movements of the 1960’s. This overview looks at the policy’s history, where we currently stand, and where we are headed in the future.

            Before discussing the history of this policy, it is important to look at how autism is currently diagnosed. The American Psychological Association and the new Diagnostic and Statistical Manual of Mental Disorders (DSM-V) implemented in May of 2013, now classifies autism disorders under the diagnosis of Autism Spectrum Disorder (ASD). Anyone diagnosed with one of the previous four disorders from DSM-IV (Autism disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified) should still meet the criteria for ASD in DSM-5, or another more accurate DSM-V diagnosis (Autism Spectrum Disorder, 2013). Determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient. However, by not outlining recommended treatments and services and classifying autism as an umbrella or spectrum disorder, the DSM allows clinicians to account for the variations of symptoms and behaviors and treat each child on a case by case basis (Autism Spectrum Disorder, 2013).

            The gray areas associated with autism have led to advocacy, and changes in social policy and legislation regarding diagnosing and treating the disorder. Historically, this was and in many cases still is, considered an educational problem with school districts being responsible for screening and testing for autism. The problem with this is explained by Dr. Michael Chez   (2008), when he states that parents are often misled by the confusing terminology and are given different descriptive or diagnostic labels for their children by occupational therapists, speech therapists, or educational specialists. He goes on to say that the terms used for autistic spectrum disorders (ASD) rely upon description, not biological definition (p, 24). This leads to a problem mandating insurance companies to reimburse for diagnosing autism. As Chez (2008) further explains, there is no standardized universal method to confirm the diagnosis, although psychological screening tools such as the Autistic Diagnostic Interview (ADI) or the Autistic Diagnostic Observation Schedule (ADOS) are usually quite predictive of the condition being present. Nevertheless, these types of screening tests do not rule out other neurological conditions that may mimic autistic conditions (p, 26). The educational system and the Individualized Education Plan may provide services such as Applied Behavioral Analysis (ABA), speech, occupational, and physical therapies as well as counseling and early intervention for children younger than 3 years. However, average per-pupil expenditure for educating a student with autism was more than three times as much as for a regular-education student and was one of the highest expenditures for students receiving special education services (Kataoka, 2012, p, 759). Looking further at expenses, direct medical and non-medical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health (Dealing With the Financial Burden of Autism, 2010). Furthermore, Autism Speaks estimates the cost of caring for an autistic person over his or her lifetime at $2.3 million (Howe, 2013) while other studies have that number at $3.2 million (Konrad, W, 2010). With so-called safety net state Medicaid and federal programs feeling the financial pinch, new ideas and solutions are needed to address this issue.

             On a national level, the Combat Autism Act in 2006, raised awareness about the disorder and helped bring autism into the mainstream. Originally starting in grassroots and local communities it is now a state by state issue. Currently, legislation regarding insurance reform has been passed in 34 states with Oregon the most recent. Three more states are working on legislation this year and there are still 8 states not pursuing any type of insurance reform at all (State Initiatives, 2013). In New York, Governor Cuomo signed the reform bill into law in 2011. Co-sponsored by Senator Charles Fuschillo and Assemblyman Joseph Morelle, there was a last minute regulation added. It basically allowed insurance companies to deny reimbursement of applied behavioral analysis if the ABA provider didn’t hold a state license. What was curious about this was New York State didn’t offer a license for behavior analysts. So if therapists were not licensed social workers or psychologists for example, the claim was denied. According to Jamie Pagliaro, co-founder of Rethink Autism, there are over 700 board-certified behavior analysts in New York, but perhaps fewer than 50 of them also hold additional state licenses in psychiatry or social work (Mulder, 2013). Senator Fuschillo responded with additional legislation ensuring ABA therapy be covered by insurance as originally intended. His bill established a procedure in license behavior analysts. In addition, analysts who are already certified by the national Behavior Analyst Certification Board will immediately be licensed upon their filing an application with the state and paying a licensing fee. This greatly expands the places where individuals with autism could access the care they need (Fuschillo, 2013). Many people, businesses and politicians feel regulatory policy where government intervenes in the affairs of private business is not warranted, even for autism insurance reform. By keeping it on a state level, can this eventually become a national mandate? That will be difficult, but it is not out of the question as the remaining 8 states with no reform policy could be a starting point.

            Looking to the future, with the implementation of the Affordable Care Act over time we will see financial burdens for state Medicaid programs and Federal initiatives. Furthermore, advocates see a major stumbling-block with the state “Marketplaces” where health plans are to be chosen by consumers. According to Web MD, the Marketplaces must cover 10 essential benefits which include “behavioral health treatment” and “rehabilitative and habilitative services and devices.” However, the Department of Health and Human Services declined to specify treatment of autism as an essential health benefit and left the matter to the states (Vaida, 2013). There are 37 states that have at least some form of insurance reform (AutismSpeaks, 2013). Regardless, it will depend on the state where you live as to whether the insurance plans in the Marketplaces will cover behavioral health treatments that include autism treatments like applied behavioral analysis. As of now there are 24 states plus Washington D.C. that will cover the therapy (Vaida, 2013). Social policy advocates can bring this to a national level in a number of ways. One is to look at existing research examining costs associated with private insurance vs. Medicaid. For example, Pennsylvania (implemented private insurance reform in 2008) was able save an estimated $8 million in Medicaid spending after the first year by decreasing their ASD Medicaid Waiver population by 5% (Kataoka, 2012, p, 760).  Additional initiatives might include advocates working with organizations such as AutismSpeaks and politicians who have been influential with prior legislation. Together, they can inform, organize and mobilize the remaining 8 holdout states to create reform legislation and in the process begin standardizing what we consider “behavioral health treatment” and “rehabilitative and habilitative services and devices” as they relate to autism.         

            In conclusion, autism is a crisis that is not defined by geographical location, income, race or religion. All of America needs work together moving forward and look at autism with the same lens as cancer, diabetes, and other diseases covered by private insurers. As explained by Kataoka (2012), by mandating that private health plans also cover similar services as in the public sector, more costly services such as psychotropic medications and hospitalizations may be avoided and fewer children will fall through the cracks. Furthermore, we need to further the discussion on how private health plans and public Medicaid systems will share in the costs of assessing and treating children with ASD across the life span and how school services should be integrated in the overall treatment plan for children.






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© Nick Malcuit 9/2013