Historically, insurance coverage for the treatment of autism spectrum disorders (ASD) has been limited in the United States; therefore, in response, Washington, D.C., and 44 states passed autism insurance mandates. These state mandates require that numerous private insurance health plans provide coverage for services related to the diagnosis and treatment of autism.

Margaret Daniele Fallin, PhD, directs the Wendy Klag Center for Autism & Developmental Disabilities, and chairs the Johns Hopkins University department of mental health. Fallin states that in order to attain the most benefit from the treatments available to children with ASD, early diagnosis and treatment is key. Regrettably, research presented at the 2016 International Meeting for Autism Research indicates that these new health insurance mandates seem to be failing, resulting in only a slight increase (12.2 percent) in the number of children with autism who are receiving treatment.

 

Assessing Early Implementation of State Autism Insurance Mandates

The study Assessing Early Implementation of State Autism Insurance Mandates was completed using data compiled by the Health Care Cost Institute, which is a nonprofit organization focusing on price transparency. The data used for this study consisted of insurance claims from 2008 to 2012. The number of case files used totaled 154,000 children. The files used in the study were limited to three large insurance companies that were available in all 50 states as well as in the District of Columbia (Medicaid plans were not included in this study).

 

Study Specifics

Files are Separated into Four Groups

Researchers took the files from the states with health insurance mandates and split them into two categories:

1. Children whose coverage was affected by the mandates.

2. Children whose coverage was exempt. 

Next, researchers divided the files from the states that did not have insurance mandates into two categories:

1. Children who had commercial insurance that would have been affected if a state mandate was implemented.

2. Children whose insurance would not be affected by a mandate.

Once the files were separated, the researchers examined how many treatments that related to autism were billed to the insurance companies.

Factors the researchers took into consideration include:

  • Calendar month
  • Age
  • Sex
  • Type of health plan

The researchers find that, on average, having a state mandate increased the number of autism treatments being billed to the insurance by approximately 12 percent:

  • Nearly 10 percent during the first year of the mandates (2008).
  • Almost 17 percent the second year the mandates were in place (2009).
  • Slightly over 17 percent in the years that followed (2010, 2011 and 2012).

Researchers state that this slight increase is not acceptable in that since 2000, the number of children on the autism spectrum has risen substantially. According to the Centers for Disease Control and Prevention (CDC), in 2000, 1 in 150 children received an ASD diagnosis; whereas, in 2014, the estimated number of children with an autism spectrum disorder diagnosis was 1 in 45 (nationwide).

David Mandell, ScD, was one of the researchers on the project. He is also the director of the Mental Health Policy and Services Research Center at the University of Pennsylvania. Mandell states that, when compared to the autism estimate given by the CDC, these numbers suggest that countless commercially insured children with autism are not receiving treatment through their health insurance providers.

Researchers continue to decipher what type of treatments the children who were able to use their health insurance plans essentially received. According to Mandell, questions related to the quality of care these children received still remain and insurance mandates are necessary, but not sufficient in helping people receive the therapies they need.

 

Insurance Mandates Are Helpful, But Additional Changes Are Necessary

The Autism Science Foundation's chief science officer, Alycia Hallady, states that state health insurance mandates requiring coverage for autism therapies are an essential first step; however, more needs to be done.

Large companies who insure their own employees are not required to abide by these state mandates; furthermore, some states do not require small businesses to offer coverage for autism spectrum disorders. In addition, some states provide coverage to Medicaid recipients, state employees and individuals purchasing health insurance in Affordable Care Act marketplaces; whereas, others do not. Therefore, even with these mandates, Autism Speaks estimates that the percentage of Americans who have insurance coverage for ASDs is just slightly more than 35 percent.

 

5 Possible Reasons Children with ASD Coverage Are Not Receiving Treatment

Variations in how generous each state's mandate for coverage is for autism treatment differs greatly: These variances may be part of the reason that children with ASD coverage are not receiving treatment. 

Possible reasons for lack of treatment:

1. Restrictions on Covered Services

An insurer may argue that particular services are not necessary.

2. Providers Do Not Participate

Insurers may reimburse at a low rate or have such extremely high cost-sharing percentages that health care providers choose not to participate.

3. Insurance Coverage Limitations

Limitations on the number of visits or hours of treatment covered each week, a designated age range for the beneficiaries who qualify to receive coverage for ASDs (coverage termination age varies, ranging anywhere between 6 to 21 years) or placing a cap on the amount of coverage a beneficiary can receive.

4. Lack of Physicians Familiar with Autism Treatments

Mandell co-authored a qualitative study that, when compared to the need, found the number of doctors who are familiar with the treatments for autism are lacking.

5. Waiting Lists for Medical Referrals

Halladay states that due to the limited number of people trained to address autism-related problems, there are numerous waiting lists, she continues, stating that this is not an easy issue to resolve.

 

Insurance Companies Warn of Premium Increases Due to State Mandates

Insurance companies argue that these state mandates could drive up the cost of premiums; however, according to the National Conference of State Legislatures, these mandates have resulted in minimal increases of approximately 1 percent. Nonetheless, this could change if autism rates continue to climb or plans begin covering more services. Furthermore, these changes may dictate whether large, self-insured companies that are unaffected by the mandates choose to cover services related to ASDs.