Even in states requiring health insurers to cover autism treatments, a new survey suggests that uncertainty about the mandates is calling into question the effectiveness of the laws.

In the survey of more than 900 families affected by autism who live in states requiring coverage, more than a quarter said they were unaware of the rules in their state.

And among those who were familiar with their state’s autism insurance law, more than half said they didn’t know if their insurance plan was included.

The survey released Thursday was conducted by the for-profit patient advocacy company MedClaims Liaison and Autism Speaks, which has heavily lobbied for autism insurance mandates in the states. The findings paint a picture of families that are confused at best by the coverage requirements.

Families participating in the survey came from Texas, Pennsylvania, New Jersey and Connecticut — where autism insurance laws are already in place — as well as New York and California, which are currently implementing such requirements.

More than half of families said some providers they used didn’t accept their insurance. And, most described their autism coverage as “poor” or “unacceptable.”

“The results of this survey clearly indicate that passing autism insurance reform… is just the first phase of helping families access the services and treatments their children need,” said Peter Bell, executive vice president of programs and services at Autism Speaks. “Once a bill is enacted, we must turn our attention to implementation and enforcement.”

Currently, 29 states have passed laws requiring that health insurers cover autism treatment, according to Autism Speaks. In most cases, the laws require certain plans to cover services like applied behavior analysis, or ABA therapy.

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