In 2013, my son was about to begin applied behavior analysis (ABA), a common therapy for autism spectrum challenges. Just as he was due to start his ABA treatment, I learned that it would no longer be covered by our new health coverage under Medi-Cal.

ABA therapy was a relatively new benefit under the Healthy Families Program (California’s implementation of the Children’s Health Insurance Plan). When the state decided to transition all children on the Healthy Families Program into Medi-Cal during 2013, families such as my own were told that coverage would not change as a result of the transition. Yet my son, and other children, were abruptly denied coverage of ABA.

In the midst of this turmoil, I went from being a parent advocate focused solely on my child’s specific needs, to one advocating for change at a state level. I wanted to address the systemic issues that had allowed these miscommunications. I joined the Healthy Families Advisory Panel, currently known as the Medi-Cal Children’s Health Advisory Panel (MCHAP). MCHAP advises the Department of Health Care Services (DHCS) leadership on issues impacting children with Medi-Cal. The Panel consists of 15 members who are medical professionals, children’s health advocates, and – very uncommonly – parents.

After several months of advocacy, my son and others were indeed able to receive ABA treatment, which has helped him thrive. But, it shouldn’t have been so hard.

During my three years on the advisory panel, I shared details of what we faced as a family, what wasn’t working for us (and, in all likelihood, other families), and where I felt things needed to improve. While at times I was intimidated by the status of other panelists, the panel and DHCS leadership were quite supportive and respectful of parent members.

As one of a handful of parents on the advisory panel, I had the opportunity to provide feedback about real experiences with the Medi-Cal system, experiences often fraught with frustration and stress. While customer feedback is especially necessary in any business, it often felt as if the consumer voice was missing from important decisions within DHCS. Our experiences as parents and patients are vastly different from those of administrators or providers. As parents, we experience first-hand the hassles of confusing or error-ridden paperwork, the worries of months-long waits for specialist appointments, and lost work time while trying to access county or state Medi-Cal offices only open during standard business hours. Collection and analysis of data regarding consumer experience is crucial for improving outcomes.

Given that I was motivated to become involved because of a negative experience, plenty of what I had to offer in panel discussions focused on pointing out problems we experienced. One such problem was the frequently confusing and unclear letters sent to parents regarding benefits and coverage. On the panel, I emphasized the need for DHCS to simplify communications and make them more consumer-friendly, my voice joining those of other advocates working on that issue. Happily, as a parent, I recently received a notice about Medi-Cal dental benefits that was both informative and easy to understand.

Additionally, as a parent advocate, I became better educated about my rights and options. I had access to DHCS staff, health care advocates, and others positioned to help. When my son’s Medi-Cal coverage was inappropriately discontinued (while his twin sister’s coverage continued), advocates helped me connect with my state representative to successfully get it reinstated.

While I’ve had many issues with the system, I certainly can’t begin to speak for all families with children on Medi-Cal. Straightforward paths for parent engagement and feedback need to be developed. And parents need to know that voicing their concerns and ideas will make a difference. We need opportunities for more parents and caregivers to share their experiences so that the entire system can become more kid- and parent-friendly!

There are more than five million children in California who receive health care services through Medi-Cal. I was fortunate to be in direct contact with DHCS leadership and those advocating for children in this state. However, there are shockingly few established openings for parents, family members, and caregivers to be engaged in policymaking. We need better parent representation on advisory panels and throughout the legislative process as a whole. When we leave parents out of the policymaking process, we are ignoring valuable insights and unique perspectives. The voices of parents are critical to ensuring that all children have access to quality, affordable health care.

In addition to raising her twins, both of whom have struggled with significant health issues, Dr. Alice Mayall works in a private psychotherapy practice. She has previously held positions focusing on youth, as Training/Associate Director of Counseling Center at University of the Pacific and Senior Child Clinician at a community mental health center in rural Indiana. 

She has held church, homeless shelter, and domestic violence shelter board positions.

Dr. Mayall earned her MA and PhD degrees in clinical psychology from Northern Illinois University. She also holds a BA in psychology from Mills College.