Michigan families navigate scarce resources when seeking help for lead-poisoned kids

When Detroit resident TaNiccia Henry’s grandson Lloyd Toliver was 4, his hair stopped growing and his feet turned black. Henry took her grandson to the doctor, and she was shocked by what she learned: her grandson had lead poisoning.

“At the end of the day, I’m going to say God’s honest truth: I didn’t know much about lead,” she says. “I don’t think anyone does until it touches their family.”

After having her house tested, Henry was similarly dismayed to learn that there was “literally lead everywhere in the house,” from the walls to the windows to the tiles in the bathroom. With the help of the Wayne County Health Department, Henry learned cleaning practices to reduce the lead in her home, as well as dietary changes that could help lower Lloyd’s blood lead level. As she implemented both, Lloyd’s blood lead levels slowly decreased. 

Now 9, Henry says Lloyd’s memory is terrible and he doesn’t learn at the same pace other kids do. But his feet are no longer black, his hair grew back in a year ago, and his grades have recently improved. Henry credits all the interventions she’s taken advantage of so far, including cleaning the house, Lloyd’s dietary changes, and educational support at school.

TanNicia Henry and her grandson Lloyd Toliver at home. Photo by Nick Hagen.

“It’s a combination of knowing what to look for and knowing what to do,” she says. “But at the end of the day I don’t think enough people know. I try to stay up on health and all of that, but this is something that I didn’t know about.”

Many Michigan parents have had similar experiences to Henry. In 2020, 2,301 Michigan children who were tested for lead had an elevated blood lead level (EBLL), and even that number paints an incomplete picture of lead poisoning in the state. The Michigan Department of Health and Human Services (MDHHS) notes that the COVID-19 pandemic likely depressed 2020’s statistics, as fewer families were able to access testing. The number of tested Michigan children with an EBLL hovered between the high 3,000s and 5,000 for the five years prior. And, of course, none of these numbers include the many Michigan children who are lead poisoned but never tested or diagnosed – testing has plummeted amid the pandemic.

So far, Michigan’s response to lead poisoning has leaned more heavily on prevention than interventions for lead-exposed kids (although bills currently being considered in the Michigan Legislature may increase the number of lead-exposed kids who receive intervention services). For example, Michigan strengthened its Lead and Copper Rule in an effort to prevent a repeat of the Flint water crisis (though some advocates question how well that rule captures risk), and the state and local governments have launched lead prevention efforts to raise awareness of common sources of lead in the home. However, lead poisoning continues to affect thousands of Michigan children every year. 

Although lead poisoning can’t be cured, numerous interventions can help reduce its effects and reduce an affected child’s blood lead levels. The effects of lead poisoning, and therefore the most effective interventions, can vary widely from individual to individual. And it’s not easy for families to access the help they need.

“Kids present different characteristics,” Christy Callahan, director of the Clinton County Regional Educational Service Agency Office of Innovative Projects and a member of MDHHS’ Child Lead Exposure Elimination Commission, told Planet Detroit. “That’s kind of one of the mystery things about lead. We know there are attention issues, behavioral issues, cognitive concerns. We know that a supportive and nurturing home environment, nutrition, and education supports for the parent and child can make a difference.”

Assessment is the first step

Professional assessment of a lead-exposed child’s development is a helpful first step in determining the most effective interventions. In Genesee County, for example, residents who may have been exposed to lead-contaminated Flint water are eligible for a neuropsychological assessment from the Genesee Health System’s Neurodevelopmental Center of Excellence (NCE). 

Conducted by doctoral-level neuropsychologists, the assessment includes an interview and two to five hours of testing, resulting in a report taking stock of the patient’s problem solving, memory, language use and comprehension, and learning ability. Dr. Amelia Fonger, clinical director of NCE, said the ultimate goal of the assessment is to make “relevant recommendations” for the patient’s next steps.

“Those tend to focus on educational, medical, or mental or behavioral health needs after the assessment, and linking those families or children to the appropriate resources,” she said.

A neuropsychological assessment is a particularly sophisticated first step for those dealing with an EBLL, and it’s unfortunately much harder to obtain for those who don’t live in Genesee County. Fonger says there are often long waiting lists for such an assessment in other areas, due in part to a lack of qualified staff. But if a neuropsychological assessment isn’t available, families can also consult with their doctor or local health department about next steps.

“The after is really important,” says Elizabeth Burtch, director of children’s services at NCE. “As a parent, you’re handed this beautiful report with these recommendations, but a lot of times it’s very overwhelming to think, ‘All right, now I’ve got to find a physical therapist,’ or, ‘Now I’ve got to ask the school to do an evaluation for special ed services.’ The report is great, but it’s only as good as actually being able to get those recommendations completed.”

Peeling lead paint on windows at TanNiccia Henry’s home. Photo by Nick Hagen.

Cognitive interventions

Lead poisoning can cause permanent damage to the brain and nervous system, slowed growth and development, learning and behavior problems, and hearing and speech problems, so many interventions are geared toward supporting cognitive development in children with an EBLL. 

One example is the Early On program, funded by the state and local governments. Although not exclusively designed for lead-exposed children, Early On provides early intervention services for children with developmental disabilities from birth to age three. Participating children may receive a variety of services depending on their unique needs, ranging from speech-language pathology and audiology services to physical therapy. The starting point for each family is developing an individualized family service plan. House Bill  5418 would simplify the process for a child referred to the state with an elevated blood lead level to receive early intervention services through the Early On program.

“The plan is about understanding the needs of the child and then setting goals and measuring progress every time you visit,” Callahan says. 

Other programs offer assistance for parents seeking to support a lead-exposed child’s cognitive development. The state’s Great Start Readiness Program and Head Start programs provide preschool and school readiness services for low-income families. Callahan says evidence-based studies on educational interventions for lead exposure are an “area of need,” but anecdotal feedback from parents on these interventions is strong.

One example is Brilliant Detroit’s 313 Speaks program, which uses technology developed by the nonprofit LENA to track and improve the quality of verbal interactions between parents and children. Brilliant Detroit co-founder and CEO Cindy Eggleton told Planet Detroit that although the program was not developed specifically for lead-exposed children, it has served several of them.

“The families absolutely love it,” she says. “It helps you learn how to talk more or when to talk more to your child, and it actually builds a good relationship between caregiver and child.”

Eggleton says parents seeking to support a lead-exposed child’s cognitive development are “not alone.”

“That’s the bottom line,” she says. “They don’t have to be alone. There is help.”

Dietary interventions

Fine-tuning what a child eats is another way to address lead poisoning. Henry, for example, overhauled Lloyd’s diet to emphasize proteins and vegetables, and cut out a lot of carbs, starches, and sugar. She attributes his improvement to that switch, at least in part. 

“The goal is for those bowel movements to happen,” said Imoni Williams, Emergency Housing Disaster and Relief branch program manager at Wayne County Health Department, who has done a variety of lead prevention and intervention work in her time with the department. She refers to the fact that lead is excreted through the body via feces or urine. “So we recommend high-iron foods high in Vitamin C, calcium, and a lean protein diet.”

However, dietary interventions for lead poisoning are still somewhat lacking in scientific evidence. A 2012 Centers for Disease Control and Prevention publication, entitled “Low Level Lead Exposure Harms Children: A Renewed Call for Primary Prevention,” notes that a well-balanced diet is “essential” for lead-exposed children to meet the “recommended daily allowance of essential vitamins and minerals and to provide adequate calories for growth.” However, in a 2017 article in the Journal of Pediatrics, entitled “The ‘Lead Diet’: Can Dietary Approaches Prevent or Treat Lead Exposure?” Dr. Katarzyna Kordas states that “careful examination of the links between nutrition and lead exposure reveals limited and tenuous evidence.” 

Scientific evidence most strongly supports an iron-rich diet as an intervention for lead poisoning. Kordas’ summary of research on the subject found that iron deficiency is associated with EBLLs. Furthermore, lead competes with several other metals including iron for absorption in the gut, leading to lower lead absorption when higher iron concentration is present. Kordas’ summary found less conclusive evidence on the effectiveness of other nutrients such as zinc, calcium, and Vitamin C. 

Kordas concludes that further research is needed on the relationship between diet and EBLLs, particularly on the ways multiple nutrients may interact with each other in a lead-exposed individual. But, she concludes, “…  it seems prudent to adhere to current recommendations [to provide lead-exposed children with adequate iron-containing foods, vitamin C-containing foods, and calcium], with the understanding that they represent a benefit for children’s nutritional status.”

Housing and basic needs

Another crucial intervention is identifying and eliminating the source of lead exposure – which can be challenging since it’s often a family’s home. Williams’ work focuses largely on finding new housing for families who have been exposed to lead in their homes – either permanently or temporarily, until lead abatement can be carried out. Williams and her colleagues have also provided cleaning kits to families, teaching them how to clean toys and other high-touch items to eliminate lead dust. But she says the ultimate goal is abating the home, or removing lead from it entirely. Although the Michigan Lead Safe Home program covers most costs of abatement, Williams says the process can still be lengthy and difficult. The cost of full abatement for a home in Detorit can often exceed the value of the home.

“It can be costly and there is no standard, across-the-board number,” she says. “Every house is different. Every house might have different hazards, and every hazard isn’t the same, so it gets complicated.”

In 2017, Grand Rapids resident Shantal Ferrell found out her then 1-year-old daughter Imani Thomas was lead poisoned during a routine test at a WIC appointment. She learned that the paint in the house she was renting was contaminated with lead, but her landlord backed out of abating the property because he would have been responsible for any costs over $10,000. Instead, he sold the house and Ferrell was forced to move. She says she often hears many people ask families who’ve been exposed to lead in their homes why they don’t just move.

“For individuals who are in the low-income communities, especially the Black and brown communities, some of them don’t have that luxury,” she says. “So they have to stick it out.”

Many families dealing with lead poisoning also struggle with basic needs that have nothing to do with the lead exposure itself. Many of them may have food security or financial concerns. Burtch says NCE staff’s interventions also involve simply connecting families to community resources that can help fill those needs.

“If you don’t have resources or you’re worried you don’t have enough food for your family, we’ve got to work on that before we can ever make a specialist appointment,” she says.

Williams has also helped many families connect to basic needs while dealing with lead poisoning. She notes that one of the most important interventions for lead exposure is also one of the most intangible: rebuilding a sense of trust in the health care system. She notes that many families she works with have had traumatic experiences with the system. Williams recalls accompanying one parent to the hospital to have her child tested for lead. The parent told Williams that her mother had died in the same hospital, and the only reason she’d brought her child there was because Williams had built trust with her and encouraged her to seek help for her child.

“If you think about how we’re entering these folks’ lives, we’re telling them, ‘You really need to listen to me and do what I’m telling you because I have your kids’ best interest at heart,'” she says. “They’re like, ‘I don’t know you.’ I’m not a nurse or a doctor, so they’re really taking recommendations from a stranger at this point. But you feel that sense of trust over time because you prove to them that I’m really doing this for their kid’s health, and that ultimately I care about your family in general. That trust is something that you prove, something that you earn.”

Filling gaps

Although a variety of interventions are available to families who are dealing with lead exposure, there’s still not enough. For example, Henry sings the praises of the health department nurse she’s worked with – but also bemoans the fact that the department is so understaffed, and the nurse so overworked, that she can’t visit Henry and her family more often. She’s also been unable to abate her home, because in order to take advantage of state programs offering funds for abatement, she would have to transfer the title for her house from her grandfather’s name to her own. She’s afraid to do that because she has numerous unpaid bills and is afraid of her property taxes skyrocketing. And she knows she doesn’t have tens of thousands of dollars to abate the home on her own.

“The resources out here, and the people who actually know how serious it is, are so few and far between,” Henry says.

For Ferrell, the most valuable intervention has been a sense of community. She connected early on to an organization called Parents for Healthy Homes, a subgroup of the Healthy Homes of Coalition of West Michigan that’s working to eliminate harmful housing conditions. Ferrell valued the support and advocacy opportunities she found in the group, and has now become its vice president. She says there are numerous organizations and groups tackling pieces of the lead problem in Michigan, but the biggest gap in the system is those groups “not being in relationship together and knowing about each other.”

“I want to see all of us be able to come together with all of our ideas, all of our agendas, because they’re all for the greater good of the community,” she says. “… We’ve got to quit putting a Band-Aid on a big problem, because that Band-Aid’s only going to last for so long.”

Planet Detroit’s Solving Lead & Asthma in Detroit series is underwritten, in part, by the Erb Family Foundation.


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