Special thanks to the BUILD DC team for contributing this piece.

When Isaiah was just 16 months old, he was intubated for 10 days because of his dangerous asthma. Though still dealing with asthma, today he’s the fastest boy on his soccer team. (And his mom Nicole isn’t just saying that because he’s her son.)

Nicole, who lives in Maryland with her family, is one of several parent members of the BUILD Health Challenge DC partnership. She’s involved in the team’s community engagement initiative, which was developed after years of focus groups, surveys, town hall meetings and more.

Why Asthma—and Why Community Engagement?

In DC, a child in ward 7 or 8—DC’s lowest-income neighborhoods—is 20 times more likely to end up in the ER for asthma than a child living in wealthier ward 3. The science is clear: when children live in housing with mold, rodents, cockroaches and more, it can exacerbate respiratory illness. That’s why Children’s Law Center, Children’s National and DC Health are using BUILD funding to eliminate poor housing conditions that often lead to asthma for children.

When BUILD DC first began meeting with families, BUILD team members developed a deeper understanding of the challenges that come with balancing work, school and managing chronic illness, while also navigating complex health and legal systems.

As part of this work, the team began by conducting formal research focus groups and gathering informal parent feedback regarding how parents feel about engaging with the lawyers who can help with legal barriers—like housing conditions—to their children’s health. One goal was learning how lawyers can better work with parents who have children with asthma. For BUILD DC, the next step included parents as full partners on the team.

That’s how BUILD DC’s community engagement initiative started—and how parents like Nicole get involved with asthma advocacy in the District.

Nicole started her BUILD DC partnership as part of Children’s National’s Parent Advisory Council. Her goal in joining was straightforward. She wanted to support parents like her who simply want to provide the best care for their children living with asthma. Her job is wide ranging. She speaks on panels, directs parents toward the best resources, provides critical feedback to the BUILD DC team and, often, just lets parents know there’s someone there for them who understands.

Community Engagement Leads to Better Outcomes for DC Families

With input from Nicole and the rest of the community engagement team, BUILD DC has already made several modifications to its various initiatives. Thanks to feedback from parents, Children’s Law Center hired a family outreach worker who focuses on building in-person relationships with CLC clients and families. Parents not only described the type of relationship they want with a lawyer, but also gave feedback on the actual job description and participated in the interviews for the position.

Children’s Law Center attorneys also changed how they practice and began holding all initial meetings for housing cases in the client’s home. This empowers the lawyers to see housing conditions for themselves because parents said this was important to them.

The BUILD DC team is engaging parents more intentionally in data collection and analysis by inviting parent members to participate in working group sessions to give feedback on the collected data and on how the team is using it.

Finally, BUILD DC is designing a parent training for July 2019 that will be presented by BUILD DC, including BUILD parents, for other parents to learn how to use their stories to advocate for systemic change. After this training, parents will be better prepared to join meetings with policy makers, testify before DC Council or Congress, or engage in other advocacy of their choosing.

These steps are just the beginning in a continued effort to effectively engage and learn from the community, leading to better outcomes for DC families.

Nicole is excited to help other families in this way, because she knows how difficult dealing with asthma can be, even without the added elements of unhealthy housing or missing school. As she explains it, “my son is my heart. If he can’t breathe, I can’t breathe. If he’s sick, I’m sick.”

By partnering with parents like Nicole, the BUILD DC team more clearly understands the complexity that comes with raising a child with asthma in the city—and is better equipped to assist families in conquering those challenges.