Lay abstract:
In the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study’s findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.
From the article:
Many participants noted that children with Medicaid often have a more challenging time obtaining autism evaluation due to low reimbursement rates and limited providers who will accept Medicaid coverage for autism evaluation across the five states. These challenges with Medicaid coverage and access to autism diagnostic services were attributed to longer wait times for poor and rural families, thereby perpetuating inequity in early autism diagnosis. According to one participant:We have [. . .] approximately 50, that I know of, professionals that can diagnose autism. Or actively do. Out of that 50, there’s probably five, that I know, who are quality, qualified autism experts that accept AHCCCS [Arizona Health Care Cost Containment System, Medicaid] payments for those evaluations. So, if you don’t have private insurance or you can’t afford a private evaluation, you are . . . sent to Phoenix Children’s Hospital. And their wait list is . . . 12 to 18 months. (Participant 33, Arizona)Participants additionally explained that when an autism evaluation does not yield a diagnosis, parents may be forced to pay out of pocket for the evaluation because their insurance plan will not cover the cost. Nevertheless, participants explained how some healthcare organizations have determined ways to ensure that children with Medicaid receive an autism diagnosis. For example, several participants described that some academic medical centers could pursue supplemental payment for low Medicaid reimbursement rates through state programs such as early and periodic screening, diagnostic, and treatment (EPSDT). Some participants elaborated that Medicaid coverage may be a greater barrier to early diagnosis in states where the Medicaid program does not accept autism as a qualifying diagnosis (regardless of income) for eligibility.
