News and Knowledge

Anyone with a loved one on the spectrum knows that the disorder doesn’t just affect that specific person, but the entire family in many ways. But how can we measure that impact?

In “Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States,” two researchers at the University of Missouri sought to determine the relationship between autism and the health care system in terms of service utilization, total cost, and ability to access needed services. They analyzed the findings from peer-reviewed journal articles in order to paint a more complete picture of the hardships families face. Here is a brief sample of their troubling findings:

Regarding health care utilization, children with autism:

• Averaged 13 more annual outpatient visits than children in general, and nearly three times as many visits as children with other developmental disorders and special health needs
• Had more inpatient stays and longer lengths of stays than children with mental retardation
• Visited the emergency room 30 percent more than children without autism spectrum disorders (ASD) and were 3.5 times more likely to use medication

Regarding health care expenditures, children with autism:

• Had significantly higher total health care costs (especially for outpatient visits) compared to children with asthma and diabetes, and three to six times higher costs than children without ASD
• Experienced a mean four-year health care expenditure increase of 20.4 percent with a large employer benefit plan
• Incurred between $724 and $1,946 in annual medication costs, seven to 15 times higher than those incurred by children without ASD or another developmental disorder; their parents were also more likely to report financial problems or needing additional income due to the child’s health concerns

Regarding access to health care, children with autism:

• Were significantly more likely to experience referral problems, incomplete coverage, difficulty getting needed services, high out-of-pocket costs, difficulty scheduling appointments, and lack of skilled specialty doctors
• Experienced coordinated care between a specialist and other providers only half as much as children with mental retardation

These statistics have important implications for members of the autism community. They suggest that broader social change needs to occur in order to fully address the health and financial concerns that families affected by autism regularly. Parents need to anticipate regular interactions with health care providers and do everything possible to ensure that members of their child’s treatment team are in constant communication not only with them, but with each other as well.

In that same vein, however, it is up to community health organizations and the entire industry to focus specific attention on educating families affected by autism, in order to help them navigate what is a complex and ever-changing system. On a policy level, lawmakers should consider ways to eliminate barriers to proper and affordable care for people with autism. Insurance mandates for interventions such as applied behavior analysis (ABA), as exemplified by a court case ruling in favor of military families, are one example of efforts to help relieve these health care burdens.

The grim reality is that we still have a long way to go when it comes to helping families access the right (and most affordable) care for their loved ones with autism without having to jump through significant hoops.

References

Tregnago, M.K. & Cheak-Zamora, N.C. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023-1031.