Family members play a critically important and unique role in their child’s health care, especially if their child has special needs. Additionally, family members gain enormous insight and expertise in navigating the often-complicated systems and programs that serve children. However, there are far too few opportunities for families and youth themselves to engage in policymaking, and those that are available are difficult for families to find out about and access. For example, family representative slots are often poorly publicized by the state, requiring parents and caregivers, who rarely have time between working and caring for their children, to scour government websites for available slots.

Even when there are opportunities for families to get involved in the policymaking process, it can be difficult for parents to effectively make their voices heard on behalf of children. Too often, parents’ deep knowledge and expertise is completely overlooked when it comes to making policies and crafting programs that could better serve children and families, simply because parents don’t know “the language” of advocacy and policymaking. In addition, when there is only one family representative on a panel, it can be easy for legislators to dismiss that family’s experience as anecdotal.

In order to better understand meaningful youth and family engagement in state policymaking, Assemblymember Eloise Gómez Reyes requested California’s non-partisan Legislative Analyst’s Office (LAO) to conduct an inquiry. The LAO’s findings are summarized in a report that also provides recommendations for the California State Legislature to consider in order to maximize input from youth and families.

The report’s findings, which are outlined below, are based on conversations with staff from four state departments – the California Department of Education, the California Health & Human Services Agency, the Department of Developmental Services, and the Department of Health Care Services – regarding eight advisory bodies that those departments oversee and that include participation of youth and/or family representatives.

Key findings include:

• State entities use various forums beyond statutory requirements to collect feedback from families, including surveys, focus groups, town hall meetings, and one-on-one meetings.
• While advisory bodies can be a useful tool for departments, assessing the direct impact on policy decisions is difficult.
• There are varying levels of engagement from families in advisory bodies, due to barriers to full participation such as not having specific technical expertise, travel to attend meetings, time commitment in addition to other jobs, and a lack of financial or other support to participate.
• The shift to a virtual meeting format, as a result of the COVID-19 pandemic, increased participation.

The report also identified the following issues for the Legislature to consider moving forward:

• Alternative ways to collect feedback from youth and families, as other forums such as surveys may work better than advisory groups for gathering input.
• Advisory body formats that better distinguish youth and family feedback from other stakeholder feedback, such as with a separate subcommittee.
• Ensuring youth and families have necessary support to be meaningful participants, such as onboarding, training, reimbursement for travel costs, and technical assistance.
• Engaging youth and families in ways that best align with their expertise, such as providing input about consumer experiences rather than a more technical issue.
• Maintaining and improving virtual or hybrid meeting capacity, as virtual meetings have increased the number and ability of stakeholders to engage directly with state entities.

Children Now asked Alison Beier, a parent representative on the Department of Health Care Services’ (DHCS) Medi-Cal Children’s Health Advisory Panel (MCHAP), to review and comment on these findings and recommendations. Alison lives in Torrance and has two kids; a typically developing 7-year-old daughter and a 12-year-old son with multiple congenital anomalies that have required more than 80 surgeries in his young life. She agreed that the pandemic has taught us about creative ways to reach more people and allow them to participate. Virtual MCHAP meetings are much more reasonable for her to manage, as she can avoid waking up at dawn to fly to Sacramento, and can simply put her microphone on mute if her son has a medical emergency and needs her help. In addition, she says, “It’s beautiful to be heard. We need more family voices in the MCHAP forum and others. The Department of Health Care Services values what parents have to say.” Alison also notes that it’s easy to get lost when the “professional” participants are using multiple acronyms and getting very technical.

One thing that doesn’t need acronyms, though, is when parent representatives help the MCHAP panel with grounding issues in reality, Alison says. For example, during one meeting, participants were discussing several mailings that Medi-Cal enrollees would be receiving from the Department. Alison was able to share her perspective, the family experience, saying “You need to know what it feels like to get mail from DHCS; we could lose our house if we lost Medi-Cal.” In other words, the information contained within that piece of mail could change her life; it’s not a casual thing for Alison to open something from DHCS. Other MCHAP members received this input thoughtfully, though it’s not immediately clear if or how mailings from DHCS will be made more consumer-friendly.

Alison is just one of the millions of parents in California, and while it’s great that her voice is being heard, so many others are left of out of the conversation. When families are engaged in the policymaking process, outcomes improve for children because programs are modified to better serve their actual needs. The State does a better job taking care of kids and families when it remembers to ask them about their experience and to value and center their expertise when making decisions about Medi-Cal or any other child-serving program.