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From the President: Emerging Issues

 A Family’s Lead Poisoning Saga Closes with Better Care

How Improving Provider Education Can Improve Response to Children's Exposure

By the National Institute for Children's Health Quality (NICHQ)

Today is Children's Environmental Health Day — a day to promote that all children deserve clean air, clean water, safe food and products, and healthy places to live, learn, and play. With the right policies and systems in place, many environmental threats and exposures can be prevented – as you'll see in a story we'd like to share.

This story is about a family's struggle with lead poisoning, which is considered the most preventable environmental disease among young children. In more than 4 million homes across America, children are living and playing while being exposed to the toxic effects of lead. This means that millions of children have a higher risk of neurological damage and are more likely to face learning difficulties, behavior and speech problems, hearing loss, and other health and developmental concerns.

The story of Sarah and her young children comes from Alabama, one of the states participating in AMCHP's Maternal and Child Environmental Health Collaborative Improvement and Innovation Network (MCEH CoIIN). NICHQ provides quality improvement expertise and technical assistance for the MCEH CoIIN as it seeks to improve states' systems of coordinated care.

Sarah's story illustrates why improving provider education is an important driver for states seeking to improve those systems: It leads to earlier testing, early and effective interventions, and the coordinated care families need so that more children have the opportunity to grow up in healthy, safe environments.

Sarah's Story

Sarah* is a single mom with four children under 13. When her youngest child (3 years old) tested positive for lead poisoning in January 2017, Sarah found herself faced with the burden of removing the lead from her home. As recommended by her health department, Sarah began a regimen of constantly mopping areas where lead and dust might collect, and she painted over peeling and chipping paint. She did all of this while managing the demands of her home and the care of her four children.

Cleaning tip: Dirty lead water, such as from mopping, should be flushed in the toilet rather than the sink so that lead residue does not get into food or dishware.

"Too often, families affected by lead poisoning have trouble correcting the cause of it," says Seratia Johnson, R.N., program director for the Alabama Childhood Lead Prevention Program and team lead for Alabama's CoIIN team. "It's not a lack of willingness to change; it's a lack of resources. Time constraints, financial challenges, and other social determinants can make it difficult for families to make the change quickly.

"Each day that goes by without that change becomes one more hazardous day for the children in the home."

Moreover, Johnson shares, families are often left confused about the severity of lead poisoning. Sarah's provider shared her child's test results, but Sarah didn't understand why heightened lead levels were so harmful to her child's development. It wasn't until months later, after talking to other specialists, that Sarah realized she'd been given inadequate and unclear advice at the initial diagnosis.

Test Delays Prove Costly

Two months after that initial diagnosis, a follow-up test revealed that Sarah's 3-year-old's lead levels had continued to elevate. The child then required more intensive care through bi-weekly trips to the neighboring children's hospital — a more than four-hour round trip — further weighing on Sarah's already strained time and resources.

"If her child had been diagnosed earlier and she had been provided more timely supports and services, or if she had fully understood the risks, the spike in lead levels may have been prevented," Johnson says. "Many providers aren't familiar with lead poisoning and the current recommendations, or the available resources. As a result, children's diagnoses are often delayed, and families aren't able to take advantage of the services meant to support them."

During this time, none of Sarah's other three young children were tested for lead poisoning, despite the proven environmental risks in their home. This oversight was especially significant given that her 5-year-old daughter had autism and pica (a disorder that causes children to eat nonfood items) and was therefore at an increased risk for putting lead-based and lead-containing items in her mouth.

Unsurprisingly, when finally tested that summer, the 5-year-old's results confirmed that she had lead poisoning. Had all of Sarah's children been tested when the 3-year-old was diagnosed, Sarah could have addressed the needs of her 5-year old six months earlier.

Provider Education Improves Care

Now, both Sarah's 5-year-old and 3-year-old are being treated for lead poisoning and benefitting from the assistance of a state care coordinator. The coordinator connected Sarah's family with the Women, Infants and Children nutrition program, so they can access foods rich in calcium and iron that can improve lead recovery. Sarah is also benefiting from transportation resources, like vouchers for gasoline, to help ease the burden of traveling to the hospital for additional treatments.

"We have the systems in place to support families," says Johnson. "It's just a matter of assuring families can access them.

"This story is just one instance of how children are getting missed, and preventative measures and treatments are delayed. We want all children to receive the supports they need. That's why we're working to ensure that all providers have the right recommendations at their fingertips. By helping providers understand who should be tested and when, and standardizing what they share with families, we can do a better job of helping families and responding with coordinated services."

Over the next two years, Alabama and its fellow state teams will continue to apply quality improvement methodologies to address and decrease the risks of lead poisoning in children and families. Read the full blog post at https://www.nichq.org/insight/lead-poisoning-continues-put-too-many-children-risk

*The mother's name was changed to protect her family's privacy.