Rick and Diana King first noticed something wasn’t right with their middle son Benjamin more than 20 years ago.
"Benjamin was just an infant," Rick King said. "I kind of knew what to look for a little bit as far as him making his marks, you know, the benchmarks, and he wasn't making them."
At the time, they were living in an apartment on Cleveland’s West Side unaware it was contaminated with lead paint.
Ben’s parents noticed he was easily distracted, had trouble sitting still and communicated through grunts rather than using his words.
When they took him in for testing, his blood lead levels were above 20 micrograms per deciliter, Diana King said. That’s more than five times the current federal threshold.
"But any amount of lead in the blood is dangerous, life altering, and once it’s there, it’s there," she said. "It’s lifelong."
Cleveland Department of Public Health reports show nearly all cases of childhood lead poisoning in the city come from lead paint chips and dust.
Erika Jarvis is in her late thirties. The life-long Cleveland resident was diagnosed with lead poisoning when she was four.
It was the lead paint in her childhood home in Cleveland’s Glenville neighborhood.
"A lot of people don’t know that lead paint is sweet to taste, and I was young, I liked to eat." Jarvis said. "So, if you’ve got a two, three-year-old crawling around, picking up stuff that tastes good, you’re not going to take it out."
Jarvis said she can’t remember how high her lead levels were, but the impact is still clear.
She recalls, at school on her fourth birthday, a classmate she thought was hogging all the attention.
"I just had like a complete meltdown, you know, flipping chairs, kicking over blocks, I mean just really serious stuff." she said. "That was, like, the realization, like we really don't know what it is, but I just know that's not normal."
Lead poisoning cases are dropping, but testing rates are low
Every young child in Cleveland is not tested for lead poisoning every year. In 2023, less than 8,000 children were tested, but that was less than a third of all kids between the ages of one and five in the city.
Dr. David Margolius, who heads the department, calls that concerning.
"A brain less than one years old, less than two years old, growing so fast, [it] sucks in lead if it's in the blood instead of calcium," Margolius said. "That causes lifelong learning disabilities and cognitive slowing and behavioral disturbances."
The city's problem with lead paint goes back decades, with 52% of children diagnosed with lead poisoning just 20 years ago, Margolius said.
Lead poisoning cases for children between the ages of one and five have fallen, according to CDPH data, with less than 20% of children testing positive in 2023.
At the same time, testing rates have also fallen. Prior to the pandemic in 2019, more than 11 thousand children were tested. Testing rates dropped during the pandemic to around 7,500 in 2020 and haven't returned to pre-pandemic levels.
Reasons for this can vary, Margolius said, from families lacking access to a regular pediatrician for their child, to doctors failing to order tests or hospital systems lacking phlebotomists, doctors who draw blood, who are able to collect samples from small children.
"It is really hard to get blood from a one year old, so it's not your average phlebotomist who can do that," Margolius said. "It's really tricky. ... At a small clinic they're not going to have that person there every day necessarily."
Testing rates in the city need to improve, Margolius said, but testing houses instead of kids would be more effective at preventing cases to begin with.
"You're testing a kid when they're one and two years old and they test positive, they're already poisoned. So, much damage has already been done," he said. "Wouldn't it be better if we tested the homes before the kids got there?"
A renewed focus on the lead paint problem
About 10 years ago, the city began working towards better addressing the lead paint crisis, Margolius said. Collectively, the city was motivated in part by reporting from Rachel Dissell and Brie Zeltner at The Cleveland Plain Dealer outlining the city's long history and backlog of houses contaminated with lead paint.
By 2019, the city established its Lead Safe Cleveland Coalition which raised nearly $100 million to support lead remediation work and helped to draft and pass the city's Lead Safe Law that year, Margolius said.
"That got passed to require that all rental units in Cleveland or were registered as lead safe," he said. "They've got private philanthropy funds that can help motivate property owners to go through the process of making their home lead safe and doing the work to reduce to reduce lead poisoning."
Landlords in Cleveland are required to pay for a lead risk assessment of their property before leasing it out. The Lead Safe Coalition can reimburse some of that cost.
"The lead risk assessment will tell you where the potential lead hazards are in your rental unit, and it will give you recommendations for how to deal with them," Margolius said. "Either to deal with them permanently through abatement or to deal with them temporarily through interim control measures like a fresh coat of paint."
The coalition, and the lead safe certification it provides after a home is properly remediated, is a step in the right direction Diana King said, but more needs to be done to help families directly.
"They need to go the next step and they need to help the people most affected," she said. "They also need to follow those most affected for years so that they [know] whether or not their program is actually worth it — if it's working or not."
To Erika Jarvis, the answer is clear.
"The Lead Safe Cleveland Coalition is not working," she said. "We're not seeing the amount of people that we need to see either A, getting their children tested, or B, finding solutions and resources."
"The City of Cleveland and the Lead Safe Cleveland Coalition have a shared goal of ensuring the city is lead-safe," Coalition Steering Committee Member Ayonna Blue Donald said in an emailed statement but added that the coalition's work remains distinct from city efforts.
"The Lead Safe Cleveland Coalition is focused on lead poisoning prevention in 3 main areas: public education, grants for property owners to make homes and child care lead safe, and pilot programs to find workable solutions to lead exposure and poisoning," she said in the statement. "The City of Cleveland’s role is regulation and enforcement, including law enforcement, inspections, and penalties for noncompliance.
"The work of the Lead Safe Cleveland Coalition is constantly evolving, finding new ways to encourage property owners to have their homes inspected and repaired, and to encourage families to have their babies and toddlers tested for lead exposure," Blue-Donald said in the statement. "Lead poisoning is preventable, and we work toward a future where all Cleveland children can be safe from lead exposure."
A CDPH report, published in October, found 11 cases of childhood lead poisoning while children lived in homes certified lead-safe.
At the time, city officials said they planned to re-evaluate its lead-safe housing policies. After discussion at the city's budget hearings and Lead Safe Advisory Board, the focus is now on addressing the backlog of unprocessed lead safe certification applications.
David Margolius said the Cleveland Department of Public Health is working with the coalition and Better Health Partnership to expand testing efforts in the city through a $1 million ARPA grant to connect more children to medical providers and remove barriers to testing across they city's health care systems.
When does the city get involved?
The Cleveland Department of Public Health steps in immediately after a child tests positive for lead poisoning, Margolius said.
"Let's say greater than 10 micrograms per deciliter, our team gets that result about two to three weeks later and immediately starts calling, reaching out to the family, visits the home and really does everything until they get in touch with the family."
Once the CDPH team is in contact with the family, they undergo a questionnaire to identify potential sources of lead exposure before conducting a formal investigation of the property.
"If they live in a home that was built after 1978, we're looking more like maybe the toys or other sources," Margolius said. "If they just moved into the home and their levels are decreasing, we kind of draw the conclusion that the source is behind them."
Rick and Diana King say, after Ben tested positive for lead poisoning, the city tested their apartment for lead paint and required the landlord remediate the property.
When it came to helping Ben, they said they had to turn to a community organization — Concerned Citizens Organized Against Lead — to learn more about ways to limit the health effects of lead poisoning.
CCOAL is lead by Robin Brown, who's daughter was diagnosed with severe lead poisoning by lead in 1999.
"Robin Brown gave me more information in one one meeting than I had got from the public health department," Diana King said.
Brown and members of CCOAL told the Kings about ways to prepare Ben's food, improve his nutrition and work with his teachers to reduce the effects of lead poisoning in his body, she said.
"That's what was different," Diana said. "It was members just like you in the community teaching other members of the community what to look out for and how to protect their family."
Ideastream Public Media
Their son, Ben, is now 24 and majoring in general studies with a communications minor at Cleveland State University.
Rick King said Ben is persistent.
Diana King said he’s overcome many of his symptoms.
"He's improved every year," Diana King said. "Now, ... he speaks a mile a minute and he's doing a lot of different things."
For Erika Jarvis, much of her support came through her mother’s advocacy and her teachers’ willingness to work with her to overcome her symptoms -- most notably a speech impediment that often left her frustrated when those around her couldn’t understand her.
"The school back then was a place where, yes, we're educating your child, yes, but we're a family too. And so we see a student that is in need of something in order for them to be successful, not just academically, but in their lives. We're going to have some resources."
Her teachers connected her with a speech therapy program through her school, which Jarvis views as an untapped resource to expand lead testing in the city.
"They do hearing tests, they do vision tests, they have the dentist come and check, and all that is great," she said. "but it would be wonderful if they would test for lead."
She’s found ways to manage her symptoms, and she shares those resources with others going through what she did as a member of Cleveland Lead Advocates for Safe Housing, a volunteer organization she joined in 2019.
But the toll the lead takes on both her mind and body never leaves her.
"I can get very moody. I can get very angry. My bones hurt a lot too," she said. "So I have to be extra diligent when it comes to not allowing things to get me upset a ... and really give myself some grace because I know that that's an issue and I know that's something that's not going to go away."
For parents living through the same harsh reality of lead poisoning in their own children, Jarvis has a similar message:
"Don't lose hope. Don't lose heart. It's okay. I know I'm a living witness," she said. "I have some issues, but I'm still blessed. I'm still here, and as long as I can, I'm going to continue to fight."
