20 Years of Informing Policies to Improve Child Health

Sitting in a conference room in Washington D.C. twenty years ago, my clinical colleagues, Drs. Diana Cutts, Patrick Casey, Carol Berkowitz, and Maureen Black, and I shared disturbing and tragic stories of the consequences of the 1996 welfare reform on the health of children. I told them of a child at Boston City Hospital (now Boston Medical Center) with sickle cell disease who died suddenly of a fever when he was left in the care of his 14-year-old sibling while his mother searched for a job after being cut off of cash assistance. We all had heartbreaking stories like these because we were all running Grow Clinics treating some of the most vulnerable Americans: young children with failure to thrive.

Our convening was hosted and facilitated by Share Our Strength, a national organization working to end childhood hunger in the US. They asked us to consider policy approaches to address the clinical problems we were seeing daily. At the time, people were sharing stories about the harmful impacts of welfare reform, but no one had the data on the population health effects of those policies, particularly the effects on young children. We knew from our own research and experience that very young children were simultaneously some of the most vulnerable and most invisible people in our country and these policy changes were having serious consequences on their growing brains and bodies.

From there, we devised a plan; we may not have been policy wonks, but we knew how to conduct research. We decided to focus our research on children under 3 years because we knew this was a critical time of brain growth when nutritional deprivation would have the most lasting consequences. At the time, there were very little data on young children and almost no research efforts to document trends over time on their health and development, particularly in relation to public policies.

We called our research network the Children’s Sentinel Nutrition Assessment Project (C-SNAP) and began collecting data in 6 urban health care settings across the country: Boston, Minneapolis, Baltimore, Washington D.C., Little Rock, and Los Angeles. Thanks to the generous support from early funders including Share our Strength and the W.K. Kellogg Foundation, we were able to grow our research project, recruit more experts – including Dr. John Cook who helped develop the gold standard for measuring food insecurity in the U.S. – analyze our data and publish our findings in journals.

It was our naïve hope and expectation at the time that if we demonstrated increased food insecurity and consequent adverse health effects of losing welfare benefits that lawmakers would use the information to shape more child-friendly policies. The more we interviewed families and the longer we listened to their stories, however, we realized that food insecurity was only one of the major challenges jeopardizing the health of children and their families, whether they were working at low wage unstable jobs, receiving public assistance, or being cut off public assistance. Given the importance of other economic hardships and policies affecting those hardships, we incorporated questions about housing, heating, and medical costs into our surveys.

While we never anticipated continuing this research for more than a few years, twenty years on we recognize this work is more important now than ever. We have built the most current, comprehensive data set of its kind that enables us to inform policy discussions in real time. We have evolved over the years: we now use laptops to record data rather than paper; two of our original sites in Los Angeles and Washington D.C. had to stop participating due to funding; we added a site in Philadelphia; we changed our name to Children’s HealthWatch; and we expanded our staffing infrastructure to include an Executive Director and people with policy expertise. Through all of these changes, however, we remain committed to providing timely evidence to decision makers that changes in public policies are written, for better or worse, on the bodies of babies. Now in our 20th year, we continue to collect and disseminate information from the front lines of pediatric care to support policies that promote child health and family well-being and provide relevant scientific information to critique efforts that seek to take food, housing, and income supports away from families with children.