News and Knowledge

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month’s article focuses on ensuring health care coverage for children with autism and suggestions for parents on successfully advocating for their child.

For many families affected by autism, financing costly treatments necessary for their child is a struggle. To pay for interventions, therapies, medications and other necessary support services, families turn to financial sources such as state and local agencies and their insurance carriers. Unfortunately, many parents find that their children are denied insurance coverage because of their diagnosis.

Denial of coverage for children with autism is not uncommon. Despite laws in many states mandating insurance coverage for these children, insurance companies often deny coverage of treatments based on a definition of autism as a mental disorder. This year, mental health advocates are pushing a federal bill through Congress called the Paul Wellstone Mental Health Equitable Treatment Act of 2003, that would force insurance carriers to offer the same co-payments and deductibles available to those with physical ailments to people seeking coverage for mental health conditions. As currently written, the bill mandates equal treatment for all psychological disorders including autism and a wide variety of other conditions.

Until this law takes effect, parents face the task of ensuring coverage for their children alone. According to Andrea Unruh Sovern, the parent of a child with autism and presenter at the Autism One Conference last May, parents can best help their children by gaining an understanding of how insurance services are provided and payment determinations are made. Sovern is a military wife who helps other parents navigate what she calls the “insurance maze” in her work at a National Parent Training Information Center called the Specialized Training of Military Families (STOMP).

Research State Laws

Sovern suggests that parents first contact the Department of Insurance in their state to inquire about the standards for health insurance. Each state has its own laws and regulations for all types of insurance, including car, homeowner and health insurance. Parents should find out if their state has specific regulations that require autism coverage. In states that do not specifically mention autism as one of the conditions covered by insurance, insurers can find a way to deny coverage for treatment. Even in states where regulations mandate autism coverage, insurance for children with autism is not guaranteed. Often, Sovern said, the definition of autism is either too broad or narrow in those states, providing a loophole for insurance companies.

Read Carefully

Next, Sovern advises parents to get a copy of their policy and a manual from their health insurance carrier. Parents should keep up on any changes in their family’s coverage and ask questions about the review process for any claim. They should also find out what types of care need to be pre-approved by their insurance company beforehand. Parents should call their insurance company and ask a representative to explain the policy if necessary.
If an insurance company denies a claim, parents have the right to appeal the decision. Before appealing, they should find out about their insurance company’s appeals process. Parents should also uncover the basis of the denial, the reasons given and supportive evidence used in the denial, Sovern said.

Ensure Compliance

Finally, parents should make sure the terms of their policy are consistent with state regulations, Sovern said. In cases where the policy is proven to be inconsistent, parents should contact the company to attempt to rectify the matter. If they remain unsatisfied, they can file a complaint against their insurance carrier with their state insurance department. (To find your state’s insurance department, click here.) State insurance departments have complaint specialists to help in such cases. Although state agencies cannot represent parents in legal proceedings against an insurance company or adjuster, the departments can investigate any potential violations of insurance laws or regulations based upon a parent’s complaint.