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'Many of the pediatricians were not aware of the policy changes': What happens when a young child is diagnosed with lead poisoning?

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Image from Legal Counsel for Health Justice service guidelines used by early intervention service workers like Deedee Lowery in Rockford
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Sycamore citizens filed a class-action lawsuit against the city in 2020 claiming city leaders ignored issues with the water system, leading to high levels of lead in water. In the third and final part of our series looking into lead exposure, WNIJ’s Peter Medlin reports on the statewide effort to help children exposed to high levels of lead. 

Lead poisoning is the number one environmental illness of children. There are calls for local and national action to prevent exposure by replacing lead service pipes and removing lead paint from older homes.

Lead poisoning, in even small amounts, can cause significant developmental disabilities in children.

Dr. Samina Hadi-Tabassum is a clinical associate professor at the Erikson Institute in Chicago. She researches child development and worked on a pilot program with the Legal Counsel for Health Justice. It was aimed at helping the thousands of poisoned Illinois kids receive early intervention services.

Hadi-Tabassum said early intervention is a proactive approach to make sure young children with lead poisoning don’t have the developmental delays that often come it.

“They are working with a family," said Hadi-Tabassum, "sitting next to the family, showing families how to play with the children, how to talk to the children, how to engage with the children, how to ask questions, how to read a book, and so on."

Her group lobbied lawmakers and, in 2019, the state passed a law automatically enrolling kids in early intervention services if they’re diagnosed with 5 micrograms-per-deciliter of lead in their blood -- the previous level was 10.

That means a lot more kids qualify for those services. But after the law passed, Hadi-Tabassum’s program ran into a new problem.

“As you know, with policy, it has to get disseminated," she said. "And many of the pediatricians we were talking to, not all of them were aware of the policy changes and not all of them were aware of the effects of lead."

They held workshops, developed service guidelines, and surveyed a few hundred pediatricians to raise awareness.

So, what happens to kids who have already been poisoned? Well, Hadi-Tabassum said, it depends.

“Some pediatricians talked about how they didn't get enough information in medical school about the effects of lead, or that 'it's been like 20 years since I've been in medical school,’” she said. “Some of them said, ‘well if I don't see any cognitive delays in this 12-month-old infant, I might not ask them to move forward with early intervention.’ So, there is a great degree of subjectivity.”

Lead screening is required for students entering public school, but testing is also required for children who are deemed high-risk due to their area code or other factors. Every child in Chicago is considered high-risk.

Deedee Lowery is the program manager at Child & Family Connections in Rockford. They helped roll out the early intervention pilot for families in the Rockford area.

She said they get around 30 referrals for kids with lead poisoning every year. She said in many cases, parents aren’t seeing developmental delays in their child yet, so it’s their job to express the seriousness of lead poisoning.

When the pandemic hit, some families were uncomfortable with service providers in their homes. Advocates also worry that families weren’t able to get the testing done to qualify their child for services because of COVID-19.

In the spring of 2020, at the beginning of the pandemic, Illinois tested over 35,000 fewer children for lead than in that same stretch the year before. In April alone, the rate of childhood testing fell 73%.

Once early intervention went digital, they’re finding parents just as engaged. Lowery said they’re still getting referrals, especially thanks to community-based organizations.

Crusader Community Health in this area, they're a big referral source for kids with elevated blood lead levels, but other doctors around the area are not," said Lowery. "We get more referrals through them than we do through the health department, where you would think if they're knowledgeable about that, that we will be getting them from there.”

Early intervention is only available for kids up to 3 years old -- as the youngest children are the most vulnerable to the effects of lead.

As they age out of those services, Lowery said they meet with their school district to make sure they’re aware of the child’s condition and since many often need special education plans.

Hadi-Tabassum said there needs to be more communication within the community for kids with lead poisoning.

“Does the elementary school even know that this child was diagnosed with elevated lead in their bloodstream at age two?," she said. "There's just a lack of information and communication about children in the state of Illinois."

What about kids over the early intervention age when they’re diagnosed? Often they end up in special education classrooms without investigation into how they got there.

Even though young children are most vulnerable to lead, adults who are exposed can also suffer negative health effects.

Greg Maurice is the director of health protection at the DeKalb County Health Department.

“Even with older adults," he said, "it can cause high blood pressure and hypertension -- all sorts of different long-term type chronic illnesses."

Both lead in drinking water and paint are prevalent in Illinois. Hadi-Tabassum said lead paint is even more common in northern Illinois than lead leaching into water pipes.

“A flyer needs to be given to every single new family in our state that says ‘here's what lead looks like, this is where it comes from, these are the effects of it, you need to be concerned and contact your pediatrician immediately," she said, "And that's not happening.”

The early intervention program went into effect statewide in July 2020. Tabassum and her research group are still gathering data from 21 families who volunteered to be part of their study on early intervention services.

“What we found," said Hadi-Tabassum, "is that the 21 children who received early intervention services, we did not see any cognitive delays in the last three years of this study,”

Peter joins WNIJ as a graduate of North Central College. He is a native of Sandwich, Illinois.