Many Pennsylvania counties are failing to review the death of every child in their area, despite a 2008 state law that requires them to do so.

The problem, advocates and program participants say, is a lack of both state assistance in collecting data and time for volunteers to run the local panels.

Gov. Josh Shapiro wants the legislature to approve $2.5 million to improve this work, but it’s unclear if the request will be considered a priority this year.

The effort to study the deaths of Pennsylvania children dates back about two decades, when the state passed a law mandating counties host a local board of healthcare professionals, law enforcement officials, child protective service providers, and a coroner or medical examiner to review the deaths of every resident under the age of 21. The law was one of several initiatives spurred by the murder of Berks County toddler Maxwell Fisher in 1996.

Based on the information county boards gather, members are charged with creating strategies for local and state policymakers to prevent similar deaths.

But reports shared with Spotlight PA by the Pennsylvania Department of Health show that since 2020, roughly half of childhood deaths statewide have not been reviewed. Those lapses are especially prominent in rural counties, where local teams are more likely to falter or not exist.

Policymakers have known about the program’s issues for years.

A multiyear East Stroudsburg University evaluation of the program commissioned by the state Department of Health concluded in 2024 that the Child Death Review program is “an unfunded mandate.” It issued a long list of recommendations to rectify the program’s shortcomings, including creating regional teams for rural areas.

“Staffing turnovers and pandemic disruptions were detrimental to maintaining complete teams in many regions of Pennsylvania,” researchers wrote. “Some have since begun to rebuild while other teams have yet to meaningfully reengage in (Child Death Review).”

Still, lawmakers have failed to adopt legislation — or even introduce any, according to a search of the state General Assembly’s website — to address the issues facing the 2008 law.

The status quo could change this year.

Steven Shapiro, a pediatrician and longtime member of the Montgomery County review team, told Spotlight PA that he and fellow pediatrician Erich Batra, of Lebanon County’s review board, have been urging state officials to improve the “flawed” Child Death Review system. They want a coordinated effort to improve data collection and remove some burdens from counties’ responsibilities.

“If you just unpack how the child succumbed, then you begin to learn about how you can protect other children from enduring the same fate and parents enduring the same fate,” Shapiro said.

Shapiro’s son, Gov. Josh Shapiro, happens to be in a position to help get the program some state funding. Though the elder Shapiro said he does not “try to influence” policy when speaking with his son, some topics come up “over table talk at dinner sometimes.”

Earlier this year, for the first time, the governor proposed using a new $2.5 million from the state’s general fund to support the program. The Department of Health said in an emailed April statement that the money would be used to adopt some of the report’s recommendations. Those include adding health department staff to assist county teams with data collection and prevention strategies, creating a grant that counties could use to “enhance local CDR operations,” and expanding public education campaigns geared toward preventing child deaths.

The Department of Health’s statement did not specify how many positions would be added to improve the program’s organization.

Steven Shapiro said he and Batra are also working on a “cogent, complete and cost-effective” proposal to “redo” how the state is involved in Child Death Review data collection that would not require new legislation. He wouldn’t share details on how that new system might work, but said some funding from the state is essential.

Batra told Spotlight PA the $2.5 million in state funding the governor is proposing would be a good starting point. He envisions it helping counties with data collection and funding local prevention efforts, which can include things like adding signs at dangerous intersections, leading a smoke detector campaign in neighborhoods experiencing fires, or holding fundraisers for a local Cribs for Kids branch.

“A lot of the way Child Death Review works is what I call the intangibles,” Batra said. “It’s the community coming together and working together in a way that they might not always do on a day-to-day basis.”

But Cathleen Palm, founder of the Center for Children’s Justice and a longtime advocate for improving Child Death Review, told Spotlight PA she’s not convinced Gov. Shapiro’s funding pitch alone is a game-changer.

She said that if improving Child Death Review were truly a priority for policymakers, there would be more fanfare around the funding proposal from the Shapiro administration.

Palm also criticized lawmakers for their inaction on addressing issues within the program that have been known for years.

“Why do we create a law if we don’t want to follow it?” Palm said.

In a year where so many competing interests are fighting over a limited amount of state funds, Palm worries Shapiro’s proposal may go overlooked by lawmakers.

“Investing in improvements to the CDR process will further allow the Administration to expand public education and outreach, with a focus on preventable causes of child death,” Rosie Lapowsky, Gov. Shapiro’s spokesperson, said in a statement. “The Governor is hopeful the General Assembly shares that mission of protecting children and ensuring their safety.”

The annual proportion of reviewed child deaths plummeted during COVID-19 and has not fully rebounded, even though there has also been a reduction in the total number of deaths, according to annual reports from the Department of Health.

In the history of the review requirement, county boards have never succeeded in studying every death. The closest they got was in 2013 — statewide, about three-quarters of the 1,931 child deaths that happened that year were reviewed.

That rate dropped to an all-time low in 2019, when 43% of that year’s 1,907 child deaths were reviewed. The drop is often associated with the COVID-19 pandemic, because deaths tend to get reviewed many months after the fact.

The review rate climbed back to nearly 60% in 2023 (of 1,551 deaths), the most recent year for which data are available.

However, local teams across the state left more than 600 deaths unreviewed in 2023.

Unreviewed deaths stem directly from members being “stretched thin with resources” and being “pulled in so many different directions,” according to Christina Phillips, who organized the Child Death Review program from 2018 until her retirement earlier this year.

Phillips said she worked as a “one-person project” at the state level to coordinate with counties about which deaths to review. Part of the reason the Department of Health commissioned East Stroudsburg University to do its 2022-24 study of the program is because Phillips raised concerns, she told Spotlight PA.

Most of the people who serve on local review teams are volunteers who do this work alongside their regular paid positions. Phillips said many rural counties meet as little as once or twice a year.

What they need, she said, is help from state staff to request medical records, synthesize findings into data entry, and translate any patterns they find into prevention strategies.

Phillips said she was unsure why lawmakers have not tried to address advocates’ concerns, given they have received an annual report that highlights those problems for multiple years.

“Preventing kids from dying is never a partisan issue,” Phillips said. “Preventing kids from dying is possible if there are more resources for Child Death Review.”

East Stroudsburg University researchers sorted counties into categories: ones that already have strong review programs; ones that could improve in various ways; and ones that need to be redeveloped.

They identified 20 rural counties that should at least consider organizing under regional offices to maximize their resources, and 22 counties — 6 urban and 16 rural — that must regroup because although they experienced “sufficient deaths to justify a local team,” they saw inconsistent participation from members.

The 15 “strong” counties were a mix of urban and rural, from Philadelphia to a regional operation between Susquehanna and Wyoming Counties, according to researchers. They suggested that 10 other counties, including Allegheny, build on their current processes.

Many of the program’s issues stem from data collection. Researchers at East Stroudsburg found that facilitating data collection falls onto volunteer team chairs. In other states, like Maryland and Delaware, there are paid staff at the state level who coordinate data collection efforts prior to meetings, according to researchers.

Roy Hoffman, medical director of Philadelphia’s Fatality Review Program, told Spotlight PA that even for his team of roughly 15 city employees working on death review, data collection is “a pain” and “time-consuming.”

Philadelphia has operated its own death review group since the 1990s, Hoffman said, and saw few differences following the 2008 law.

“I can imagine for some of these smaller counties with coroners, with not having done this, this must be a big pull and hard to do,” Hoffman said.

The most recent state Child Death Review annual report, analyzing 2023 data, found that Black or African American children died at twice the rate of white children — a statistic in line with national trends.

Roughly 47% of the reviewed deaths in 2023 were caused by medical conditions, including prematurity. “External causes,” including bodily force or a weapon, accounted for about 45% of deaths that year.

Palm pointed to the Department of Health’s finding that roughly one-third of child deaths in 2023 were flagged by local teams as “preventable.”

“All of us as a society want to keep our kids alive and healthy and well,” Palm said. “In order to do that, we have to study the kids who died to figure out how we prevent the next child from dying.”

Palm wants the state to foster the same level of research toward preventing gun safety, motor vehicle crashes, drowning, accidental overdoses, and abuse or violence against kids as it and other institutions direct toward studying youth cancer rates.

Researchers at East Stroudsburg recommended that lawmakers amend current law to require a minimum number of quarterly meetings for each local team, boost training for local and state team members, mandate a specific timeframe for a death review to be completed, and require local teams to include representatives from school districts and “underrepresented community groups.”

They also urged lawmakers to reduce the age cap to trigger a mandated review, from 21 to 18, and to include an “enforcement provision” to encourage counties to participate in the program.

None of the researchers’ suggested changes to Child Death Review have been proposed in the General Assembly, according to a review of introduced bills on the legislature’s website.

The original bill establishing the program was sponsored by Republican state Sen. Lisa Baker. She told Spotlight PA in response to emailed questions that it’s likely time to reevaluate the system with input from state and local stakeholders to “address evolving needs.”

“Given children are potentially falling through the cracks, a closer examination and review of the program is certainly warranted,” Baker said.

Beth Rementer, a spokesperson for Democratic state House Majority Leader Matt Bradford, noted that the chamber passed Shapiro’s budget proposal in April, which included the $2.5 million for Child Death Review.

“We are open to discussions with the administration and stakeholders about improving the program to ensure all children are safe,” she said.

A spokesperson for Republican state Senate Majority Leader Joe Pittman did not respond to questions regarding potential changes this year to Child Death Review.

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This story was originally published by Spotlight PA and distributed through a partnership with The Associated Press.