In a system that is already stressed with too many children needing ASD evaluation by too few available providers, insurers are adding to the access barriers by using inappropriate and inflexible evaluation requirements.
Behavioral interventions, such as applied behavior analysis (ABA) and other relationship-based developmental interventions can make the lives of children with autism better, as well as lower the cost of care over their lifetimes. Clinicians and families work together to try to get children into behavioral therapies as soon as possible in order to maximize the possible benefits of these supports. A diagnosis of autism spectrum disorder (ASD) is often needed before children can access these services. However, for many reasons, there are long wait times until children can get into diagnostic experts to get the needed diagnosis. Insurance companies also play a role in keeping children from getting services in a reasonable timeframe. This happens because insurers often use inappropriate review criteria for ASD evaluations. When insurance companies don’t accept a child’s diagnostic evaluation, they cannot access needed services and supports. This article describes a paper recently published by faculty at the Indiana University School of Medicine that discusses these problems with insurance requirements (McNally Keehn, Tomlin, & Ciccarelli, 2021).
While there is no national standard for how ASD evaluations should be done, there is agreement that at a minimum, they should include two components:
an interview with the child’s parent/caregiver - to learn about the developmental history of the child and the current symptoms/behaviors that are impacting the child’s life.
a behavioral observation of the child – where the clinician watches and interacts with the child to see how the child communicates, socializes with others, and plays. This behavioral observation may includeusing a standardized tool (a specific test that has been shown to be accurate and reliable) but it does not have to.
These standardized tools (in #2 above) have improved over the past 20+ years and are used widely today in evaluations. One example of a standardized tool that you may have heard of is the Autism Diagnostic Observation Schedule (now in its second edition, and often called the ADOS-2). For sure, standardized tools help qualified clinicians make better diagnoses across a very complicated spectrum of what is called autism. However, no one standardized tool is the right tool for all individuals being evaluated for autism, nor is one tool usually enough to make a correct diagnosis by itself. Another important point about these standardized tools is that the people using them need a lot of training to use them correctly.
The field of ASD evaluation, as a whole, continues to evolve and improve as people try to deal with problems around the capacity of the current evaluation systems. Researchers and clinicians are working to come up with new models of how diagnoses can be given, as well as creating and testing new standardized tools that better fit the realities of our world. This is really important work to get more children evaluated more quickly by a system that currently cannot handle the load. One promising model of service uses a tiered system of services, where many children can be evaluated by local pediatric care providers with basic training while the more complex cases are sent to the diagnostic experts who have greater expertise and experience. The COVID-19 pandemic also brought about a lot of change, as providers have been limited in how they could interact with the children who needed evaluations. New standardized tools were developed to deal with the realities of virtual (telehealth) visits or providers and/or children having to follow safety measures, such as wearing masks, social distancing, etc. Many people don’t realize that many of the existing tools, most notably the ADOS-2, are no longer valid for official use if either the clinician or the child are wearing a mask or are in a remote situation.
There is a long history of insurance being a barrier to children getting quality health care for behavioral health disorders, including autism. The paper discusses one current barrier that is important – many insurers are requiring that the ADOS-2 be completed before they will consider an ASD evaluation to be valid. Insurers are also limiting coverage for telehealth evaluations, which have been necessary during the pandemic but could also improve services for children who live in areas where there aren’t local evaluation experts in the future. When insurers don’t accept these valid evaluations, then they are not authorizing needed behavioral interventions for these children and not only delaying services but adding to the work of the few already-busy experts. While it is understandable that insurers wish to maintain quality standards (while still controlling costs) by enforcing these requirements, it is not acceptable for them to use a one-size-fits-all approach to ASD evaluation methods and tools. It is critical that insurers fix these restrictions that are causing problems, by working with ASD experts to develop new standards that are flexible and allow for new/changing methods and tools while still following best-practice guidelines.
How can you help to bring about these changes?
If your child was denied services by an insurer that would not accept your ASD evaluation, make sure you talk with the clinician who did the evaluation and have them help you file an appeal with your child’s insurer. Until insurers are receiving push-back on their requirements from many families, they won’t be likely to make changes!
If you are a provider and are seeing these denials, make sure you appeal the insurance decision and ask for a peer review of your evaluation methods and tools. Speaking to the insurance company about why you used a particular evaluation approach, and educating them about how it meets the standard of care for autism evaluation, can result in a reversal of the denial.
Contact your elected officials and let them hear your story – either as a parent/caregiver or as a provider. They need to know that this is an issue that is negatively affecting children and families and needs to be dealt with.
Contact your state’s Department of Insurance and let them hear your story, as well.
Check with local advocacy organizations to see if they are aware of/working on this problem. In Indiana, speak with the Arc of Indiana, Family Voices Indiana, About Special Kids, and/or the Autism Society of Indiana.
McNally Keehn, R., Tomlin, A., & Ciccarelli, M. R. (2021). COVID-19 Pandemic Highlights Access Barriers for Children with Autism Spectrum Disorder. J Dev Behav Pediatr. doi:10.1097/dbp.0000000000000988
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Cristina James is the Data Coordinator, Associate Training Director, and Family Discipline Coordinator in the Department of Pediatrics, Division of Child Development at Indiana University School of Medicine. She has over 10 years of professional experience and a life-long lived experience in neurodevelopmental disorders which, combined with her analytical skills, allow her to effectively span across functions to help provide and improve many LEND outcomes.