WARWICK – Each year, in an annual rite of spring, Rhode Island KIDS COUNT releases its tome of information known as its Factbook, charting the well being of more than 200,000 children in Rhode Island, which in 2016 benchmarked results against 71 separate indicators.

And, each spring, at an annual breakfast filled with uplifting pomp and circumstance, the release of the Factbook is celebrated. The gathering this year on April 11 at the Crowne Plaza in Warwick drew more than 500 people, including many from the agencies and service providers that focus on children, pushing the limits of the hotel’s parking lots.

The first 2016 Factbooks were handed out in ritualistic fashion to the state’s elected officials, including Gov. Gina Raimondo, Sen. Jack Reed, Rep. Jim Langevin, Rep. David Cicciline, R.I. Senate President Teresa Paiva Weed, and R.I. House Speaker Nicholas Mattiello. Ana Cano Morales, director of the Latino Policy Institute at Roger Williams University, and Rabbi Alan Flam, executive director of the Helen Hudson Foundation for Homeless America, also received a Factbook in recognition of their ongoing work to improve the lives of children and families.

“It’s what we use to do our work,” said Raimondo, receiving the first copy of the Factbook, calling it a veritable resource Bible for public officials, addressing the overflow crowd of what she called “a sea of hardworking people.”

The script for the symphonic-like annual breakfast followed a familiar pattern: a keynote speaker [this year it was Lisa Hamilton, vice president of External Affairs at The Annie E. Casey Foundation, who spoke about “the importance of measuring trends over time”], a galvanizing youth speaker [this year, it was Christian Ortiz from Young Voices, about how to support young people reaching their full potential], and the student choruses [this year, the choruses were from the Pleasant View Elementary School and the William D’Abate Elementary School]. The overarching message was: all Rhode Island kids are our kids. The state’s well-being and economic future depends on healthy children and strong families.

The value of the Factbook cannot be underestimated as a tool for evidence-based decision making around policy, promoting an agenda that puts children and families first. Further, the coalition that has been built by Rhode Island KIDS COUNT around public policy for children and families can serve as a powerful lobbying force for positive change.

Moving forward, however, there may be different approaches taken in thinking about how to rearrange the data presentation, to feature each year a focus on a unified field of data, policy and strategy, such as how to reduce toxic stress, which cuts across many if not all of the categories in the Factbook, rather than silos of information when it comes to policy direction.

What the document said
Sitting down to read and pore over the 192-page document is much like sitting down to read a newly revised dictionary about children in Rhode Island. It requires both patience and a willingness to digest enormous amounts of information; it is not likely to be done in one sitting, or even two, three or four sittings. [It took ConvergenceRI four sittings.]

Coupled with the celebration of the Factbook is a news release and 14-page “highlights” summary – which often serves as a kind of Cliff Notes-like study guide for the news media to talk about the dense contents of the Factbook [without having to actually read it]. [Kudos, as usual, to Katie Chu at R.I. KIDS COUNT, for her work in helping to shape and to manage the content.]

In 2016, under the “Highlights,” the following data facts were synthesized into bite-size nuggets, but they were far from fast-food fare, in terms of their policy implications:

• Child population continued to decline in Rhode Island, with 212,555 children under age 18 in Rhode Island in 2014, a drop of 14 percent since 2000. Rhode Island had the fifth lowest birth rate in the U.S., with 10,418 births in 2015. Translated, Rhode Island’s homegrown population is stagnant if not declining.

• There are major ongoing shifts in diversity in Rhode Island children and families, with the percent of population identified as “Non-Hispanic White” for the age group from 0 to 4 at 57 percent in 2014, according to U.S. Census Bureau estimates. Translated, “minority” children in Rhode Island will soon be the majority.

• Poverty was related to every indicator in the Factbook, and was found to have a negative impact on children both immediately and in the long-term, with one in five children in Rhode Island – some 41,629 children – living in poverty. The economic racial disparities are very pronounced in Rhode Island, with 36 percent of Black children, 47 percent of Hispanic children, and 57 percent of Native American children living in poverty, compared to 15 percent of White children. Translated, the gaps in economic attainment and educational achievement have a distinct racial and ethnic flavor to them.

• Safe, affordable, healthy and stable housing are key factors in the well-being of families and children in Rhode Island, but the state has the highest cost burden for housing in New England. Further, Rhode Island has the highest percentage of low-income children living in older housing in the U.S., which poses increased threats of health risks such as lead poisoning and asthma. Translated, developing a strategy to improve the old housing stock and get rid of the lead could lead to improvements in health, education and economic outcomes.

• While there were numerous positives on the health-care front, including the continued high rates of health insurance coverage, improved access to dental care, and improvements in reducing the number of children born at the highest risk, there are also some difficult challenges ahead, according to the trends identified: the increased hospitalizations of children related to mental health issues, with 2,744 hospitalizations in 2014 of children with a primary diagnosis of a mental disorder. At Bradley and Butler hospitals, the most common diagnoses for young people being treated in an inpatient setting in FY 2015 were for depressive disorders [48 percent], bipolar disorders [24 percent], anxiety disorders [14 percent], and adjustment disorders [4 percent]. Translated, the increase in hospitalizations of children for mental health issues is the kind of early warning sign that the state needs to invest more resources in mental health and behavioral health for children, sooner rather than later.

• Finally, not surprisingly, the Factbook found that there was an increase in the number of babies born with exposure to opioids, given the ongoing epidemic related to substance use in Rhode Island. In 2014, 97 babies were diagnosed with Neonatal Abstinence Syndrome, up from 76 babies in 2013. Of the 97 babies born with NAS, 88 percent were born to White mothers, 34 percent lived in the four urban core cities, and 66 percent lived in the remainder of the state. Translated, the ravages of opioid addiction are a statewide affliction that defies stereotype.

Coming of age
This year’s edition of the Factbook marked its 21st birthday, a coming-of-age milestone, which seemed to have prompted a desire to look back at the progress made and, at the same time, acknowledge some of the widening disparities and gaps identified.

As a result, when it came to successful interventions and victories, one of the highlighted accomplishments, looking back, focused on the diminished prevalence of lead poisoning in Rhode Island: it was touted by speakers at the breakfast, it was touted in the Factbook, it was touted in the news release, it was touted in the highlighted findings, and it was touted in news interviews.

Yet that positive push made a number of advocates working on the issue of lead poisoning in Rhode Island a bit uncomfortable.

The advocates told ConvergenceRI, that by focusing on the reductions in the number of children who had been “significantly” poisoned by lead – those children with lead blood levels at 15 micrograms of lead per deciliter or higher – as defined as a success story in the 2016 Factbook, they were worried that it might lead to less urgency to support ongoing lead prevention efforts.

Particularly when the threshold of lead poisoning has been reduced by the Centers for Disease Control and Prevention to 5 microgram of lead per deciliter of blood [and many health professionals believe that there is no safe level], and with the ongoing travesty and tragedy of Flint, Mich., where a entire generation of children may have been poisoned by lead in the water, which has heightened national awareness. [See link below to Time magazine story.]

The children with lead levels of 15 micrograms or higher [per deciliter of blood], explained Laura Brion, director of Community Organizing and Advocacy at the Childhood Lead Action Project, “Those are the tip of the iceberg.”

Reductions in the number of those children afflicted with high levels of lead in their blood, Brion continued, “That’s something to celebrate. But the iceberg is still there.”

It is important, she said, “to celebrate our victories, to show the public that we have solutions to lead poisoning that work, and that we need to do more.”

The use of the definition of “significant” lead poisoned children was technically correct in the Factbook, Brion continued, yet it was not necessarily “correct” in spirit.

“There is no question that higher levels of lead poisoning, those which persist for longer periods of time, [can result in] more serious problems in kids,” Brion explained.

But, she cautioned, “We need to be sounding the alarm, and not making it sound like we’ve made more progress than we have.”

Dr. Patrick Vivier, director of General Pediatrics and Community Health at Hasbro Children’s Hospital, told Convergence RI that there was balance that had to be struck between acknowledging that something good has happened vs. where we need to go.

“I think that [reducing the incidence of] lead poisoning is one of the biggest victories we’ve had,” Vivier said. “[We also need to] acknowledge that we are at a place that is still unacceptable.”

A preventable childhood scourge

ConvergenceRI reached out to Elizabeth Burke Bryant, executive director of Rhode Island KIDS COUNT, to discuss the issues around highlighting the success of reductions in significant lead poisoning.

Burke Bryant stressed that the goal was to eliminate lead poisoning, a preventable childhood disease, so that there were zero children poisoned in Rhode Island. She also stressed that the Factbook talked about how lead exposure, even at very low levels, can cause irreversible damage, including increased risk for behavioral problems, decreased cognitive abilities and lower academic performance.

She also talked about her own recent visit to Flint, Mich., and the importance of resilient communities.

ConvergenceRI and Burke Bryant agreed to meet and talk later this week. Among the questions to be discussed, as a result of ConvergenceRI’s further research into some of the numbers around lead poisoning in Rhode Island:

• Discrepancies in the changing numbers around what is meant by “significant” lead poisoning in children. In the past, it was 20 micrograms of lead; beginning in 2015 it changed to 15 micrograms of lead. Should it perhaps be lowered to 10 micrograms of lead per deciliter of blood? For instance, the R.I. Department of Health found that there were 159 children in 2015 with elevated levels of lead in their blood at the 10 micrograms of lead per deciliter level. That is roughly double the number compared to the 84 children in 2015 with elevated levels of lead in their blood at the 15 micrograms of lead per deciliter level, as reported in the Factbook. What’s the best standard to use moving forward?

• Data reports put together by DataSparkRI, using existing data from the R.I. Department of Health and the R.I. Department of Education, revealed that in Providence, only half of the children entering kindergarten in 2014-2015 were compliant with regulations to be screened twice for lead poisoning: 42 percent had only been screened once and 8 percent had no record of screening, according to the data.

Of the 1,744 kids screened for the 2014-2015 school year, 577 students, or 33.1 percent, screened at 0-4 micrograms of lead per deciliter of blood; 311 students, or 17.8 percent, screened at 5-9 micrograms of lead per deciliter of blood; and 77 students screened at 10 grams or lead or above per deciliter of blood.

Translated, some 388 students screened for lead that were entering kindergarten in 2014-2015 in Providence tested positive for elevated levels of lead in their blood, according to the current health standard for lead poisoning. That’s more than one-fifth – 22 percent – of the kids screened. Does that define a persistent, pernicious problem?

The reality is that nearly 1,000 children each year statewide in Rhode Island are newly diagnosed with lead poisoning as a result of elevated levels of lead in their blood, according to advocates. The amounts may not meet the legal definition of “significant” lead poisoning triggering inspections and interventions by the state, but they represent a chronic condition where the costs and the bad health, educational and economic outcomes multiply throughout the life of the child into adulthood.

Defining toxic stress, redefining the strategy
One of the terms found increasingly used within the Factbook is “toxic stress” – defined as a variety of adverse childhood experiences and risk factors, including poverty, maternal depression, family chaos, exposure to violence, child maltreatment, and unsafe, low-quality childcare, in the section, “Infants Born at Highest Risk,” under the broader “Health” category of the Factbook.

Again, in the “Highlights” section on “Health,” toxic stress is defined as “adverse experience in infancy and early childhood” that can disrupt the developing brain architecture and “can lead to permanent changes in learning, behavior and physiology.” The effects are cumulative.

[The R.I. Health Department, in its definition of toxic stress, also includes environmental toxins and pollutants, such as lead.]

Rhode Island KIDS COUNT was a sponsor of the inaugural event, held on Oct. 28, 2015, “Building a Collaborative Strategy To Reduce Toxic Stress in Rhode Island: A Conversation/Convergence.”

Using information from the 2015 Factbook, KIDS COUNT put together a relevant database for toxic stress.

Reading through the 2016 Factbook, ConvergenceRI wondered whether, as part of the next version of the 2017 Factbook, KIDS COUNT would consider developing a broader cross-section of data around toxic stress as part of a broader, interrelated analysis.

That sense of building a more unified, horizontal approach to toxic stress has been raised as a potential opportunity for the new Hassenfeld Institute.

Last week, at the “Brains in Crisis: Stress and Resilience in Syrian Refugee Children,” held on April 8-9 at Brown University, neuroscience researchers Audrey Tyrka and Dima Amso both raised that possibility.

ConvergenceRI asked Dr. Patrick Vivier, one of the principals at the Hassenfeld Institute, if he would be willing to convene a meeting to talk about how toxic stress could become a focus of the Hassenfeld Institute moving forward. Vivier agreed to consider it.

The Factbook has been used as an evidence-based database to advocate successfully for more investments in high quality child care, early education, health care, and K-12 education. Perhaps, as a next step, it can develop a unified database around toxic stress, linking the interrelated categories, to develop a collaborative, inclusive approach to reducing toxic stress.