COVID-19 pandemic highlights access barriers for children with autism spectrum disorder

Engagement in early intensive behavioral intervention has been shown to improve outcomes (1) and lower lifetime care costs (2) for children with autism spectrum disorder (ASD). However, in most regions of the United States, a medical diagnosis of ASD is necessary to access these interventions. A shortage of expert diagnosticians (3), inefficient evaluation models (4), and long evaluation wait times (5) result in substantial delays in ASD diagnosis, and markedly later entry into services. These delays are increased for children from diverse racial (6, 7) and socioeconomic backgrounds (8, 9) and under-resourced regions (10). While systemic barriers require ongoing attention, we highlight here the critical role that insurers play in limiting intervention access through application of inappropriate medical review criteria for ASD diagnostic evaluations. Specifically, to consider a medical diagnosis as valid and authorize specialized interventions, many insurers mandate use of a specific assessment tool(s) instead of allowing qualified clinicians to use a flexible evidence-informed evaluation protocol. This has become especially problematic during COVID-19 when evaluation practices have rapidly shifted to meet demands for remote and/or socially-distanced procedures through implementation of telehealth and use of novel diagnostic tools that are not yet accepted by insurers.When insurers erroneously deem ASD diagnoses as invalid, children are unable to benefit from needed interventions, resulting in a cascade of deleterious consequences.

Advances in ASD diagnostic evaluation practices

While national and international best-practice standards for ASD diagnosis vary (11, 12), there is consensus that, at minuimum, evaluations must include: 1) Parent/caregiver diagnostic interview to ascertain developmental history and current symptoms of ASD and 2) behavioral observation of the child to assess current social communication and play skills, which may include administration of a standardized tool guided by key markers of ASD anchored to the child’s developmental/language level. Substantial progress in dissemination of evidence-based ASD evaluation approaches and tools has been made in recent decades (13). For example, the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2; 14) once only employed in research is now common practice in clinical settings. Standardized tools [e.g., ADOS-2; see (12, 13) for additional examples] undoubtedly improve the quality of ASD evaluation and, when used by expert clinicians, allow for diagnostic reliability across the heterogenous ASD phenotype. Despite their value, however, no one tool is universally appropriate, nor sufficient for making an ASD diagnosis (14). Further, these tools require intensive training to achieve and maintain proficiency, and when employed as part of a comprehensive assessment are often inefficient or unnecessary, under-reimbursed by insurers, and contribute to increased evaluation wait times.

Given these challenges, it is critical that the field of ASD diagnostic evaluation move toward the development and evaluation of innovative diagnostic models and tools that address the increasing need for evaluation capacity (15). Indeed, novel diagnostic approaches including training community pediatricians as diagnosticians (16–20), embedding clinicians in primary care (21–23), use of telehealth diagnostic consultation (24, 25), and risk-based models of screening and intervention allocation (26) show great promise. These endeavors do not make interdisciplinary evaluations and use of evidence-based assessment tools obsolete. Instead, they afford adoption of a tiered system in which traditional evaluation approaches performed by neurodevelopmental subspecialists are utilized only when clinically necessary, thereby improving access for all children at risk for ASD. While these ideas are not novel, the COVID-19 pandemic has created an immediate need that accelerated the development and application of innovative diagnostic approaches. Given that many traditional observational tools, including the ADOS-2, preclude use of PPE, social distancing, and other safety measures for valid administration and scoring, we have seen a further emergence of promising new evaluation methods and tools (27, 28) that leverage telehealth and other socially-distanced methodologies.

Insurance-imposed barriers to ASD services

Insurance-imposed barriers to receipt of quality healthcare for behavioral health disorders, including ASD, have a long history. Together, the Mental Health Parity and Addiction Act of 2008 as well as autism insurance mandate legislation have represented opportunities for improving access to needed healthcare. While some progress has been made (29), families and clinicians continue to face strict limitations on access to care (30). Of particular relevance is the mandate by many insurers requiring the ADOS-2 (and/or a limited set of specific tools) in order to consider an evaluation valid for authorizing ASD interventions. Further, limitations exist regarding coverage of telehealth evaluations despite evidence regarding accuracy and improved access and system outcomes [see (24) for discussion]. In the context of the COVID-19 pandemic, insurer-imposed evaluation requirements have had detrimental consequences as restrictions for face-to-face evaluation are in place. For example, insurers are denying ASD evaluations that employ novel approaches and assessment tools, often resulting in duplicative assessments that add further stress to families, exacerbate lengthy waitlists and burdened systems, and worsen delays in intervention enrollment. We recognize the significant motivation for insurers to maintain standards for high-quality care while controlling costs, and setting strict requirements for ASD evaluations accomplishes these goals. However, a one-size-fits-all evaluation protocol is neither appropriate nor founded in current best-practice recommendations.

Where do we go from here?

Despite consensus regarding the critical importance of early ASD diagnosis and intervention, families of children continue to face significant barriers to accessing these services. In recent years, the field of ASD evaluation has witnessed the rapid development of novel streamlined evaluation approaches and tools with promising potential to ameliorate access barriers. The COVID-19 pandemic has further advanced this effort with clinicians and researchers deploying and testing creative approaches to meet the demands for continued diagnostic services. Yet, in many parts of the United States insurance mandates for ASD evaluation have not kept up with clinical and scientific progress, and thus create further limitations to care access and cascading consequences for families, clinicians, and systems. Immediate action is necessary in order to remediate these problematic restrictions. Insurers, in consultation with ASD experts, must develop standards and review guidelines for ASD evaluation that are flexible and responsive to diagnostic innovation while ensuring adherence to best-practice guidelines. Ultimately, reducing barriers to interventions known to improve ASD outcomes and lower lifetime care costs will benefit all stakeholders. There is no time like the present, as we navigate a global pandemic during which problems with healthcare access continue to grow, where this effort is more imperative.

Abbreviations:

ADOS-2

Autism Diagnostic Observation Schedule-Second Edition

ASD

autism spectrum disorder