by: Stuart Spielman, Autism Speaks
Autism is the fastest growing developmental disability in the country and affects millions of Americans. An estimated 1 in 88 children—including 1 in 54 boys—has an autism spectrum disorder (also known as autism). The number of adults with autism is less certain. We do not know what causes autism, but it is common and thus likely that a navigator may be asked to assist individuals with autism or their families.
Let’s start with some basics. Autism is defined by deficits in social and communication skills, differences in the way those skills are used in social interaction and communication, and a varied list of behaviors that share repetitive or restricted features.
Autism is complex and every person with autism is unique. This uniqueness means that every person has different health needs. As a result, the questions that navigators must ask and answer will largely depend on the individual challenges faced by the autistic child or adult they are assisting.
Although most children with autism have health insurance, families often face significant gaps in their coverage. In fact, half of families with children and youth with autism report that their existing health insurance coverage fails to meet their needs. As a result, navigators may be asked to help families understand how the options on the Marketplace compare to a family’s current coverage—or whether the family should consider new options made available by the Affordable Care Act, such as a child-only policy.
The most effective treatments for the core symptoms of autism are behavioral interventions, and the most commonly used behavioral therapy is applied behavior analysis (ABA). As a result, families may be particularly interested in learning whether their marketplace requires the coverage of ABA. To date, ABA coverage is expected to be available in 26 states and the District of Columbia. Some families may not have access to ABA coverage through their employer-sponsored coverage, which often results in parents paying significant out-of-pocket costs. A key role for a navigator is to inform families about the opportunity to purchase a child-only policy that includes ABA coverage, including the financial implications of doing so.
ABA is just one of the medical services that an individual with autism may require. People with autism and their families may have many questions about coverage, including the following:
- Does the plan include needed services, such as mental health services, speech therapy, occupational therapy, or physical therapy?
- Does the plan limit services by placing caps on the number of specialist visits or other means?
- Does the plan cover needed prescription drugs?
- Does the plan explicitly state that certain benefits (such as ABA) are not covered even if medically necessary?
- In case a claim is denied, how does the plan’s appeal process work?
These are a few of the questions that Autism Speaks has identified that navigators may want to be aware of as they assist individuals with autism and their families. For more information about the Affordable Care Act and the autism community, Autism Speaks developed this overview, and comprehensive resources that can be found here.
For more information about autism and autism services, visit the Autism Speaks website. Autism Speaks also has an Autism Response Team that is staffed every day from 9:00 AM to 1:00 PM local time. The Autism Response Team answers questions and provides informational resources to individuals with autism and their families. They can be reached by phone at 888-288-4762 (en Español 888-772-9050), or by email at familyservices@autismspeaks.org.
Stuart Spielman is the Senior Policy Advisor and Counsel for Autism Speaks and is the father of a nineteen-year old son with autism.