For more than a year, Pennsylvania leaders have been meeting to strategize about how the state can better protect infants affected by drug use.

While it remains worthy work at any time, the federal legislation requiring states to develop these ‘plans of safe care’ was passed 15 years ago. The effort is only recently picking up steam as the state, and the nation, find themselves in crisis mode over the opioid epidemic.

“While we are talking, bad things are happening to infants and children. Some of them will end up in foster care and sadly, some of them will be damaged,” said state Rep. Katharine Watson, chair of the House Children and Youth Committee.

Pennsylvania isn’t the only state lagging in the creation of its safe care plan. Fewer than half the states in the nation have implemented sweeping federal requirements intended to change the way the government tries to help drug-exposed infants.

The federal government could withhold funding from states that don’t meet progress benchmarks by June 30, according to the U.S. Department of Health and Human Services. In Pennsylvania, the vulnerable funding amounts to nearly $1 million this fiscal year. That money helps fund mandated reporter training for people who are legally required to report suspected child abuse or neglect.

The state Department of Human Services has “not engaged in discussions with [the federal government] related to potential fiscal implications,” DHS spokesman Colin Day wrote in an April 10 email.

In January, Gov. Tom Wolf made neonatal abstinence syndrome [NAS] a reportable condition in the state. The order makes the process of reporting NAS to the Department of Health uniform and mandatory.

The numbers the public does have from previous years may be incomplete, but available figures from fiscal year 2017 show more than 1,900 newborns were diagnosed with NAS in hospitals across Pennsylvania.

Infants suffering from NAS typically have high-pitched cries. Their bodies can be wracked by tremors, interrupting their ability to sleep and feed. And they may suffer from these symptoms for weeks or months as their bodies withdraw from the drugs their mothers took during pregnancy, legal or illegal.

“It is so heartbreaking. Eventually, they do calm down,” said Nancy Stebler, 54, a volunteer “cuddler” at Magee-Womens Hospital of UPMC. Stebler reports twice a week, three hours at a time, to soothe babies going through withdrawal by holding them. “They are an innocent victim of everything.”

Nancy Stebler, a volunteer “cuddler” at Magee-Womens Hospital of UPMC, puts on a gown in the neonatal intensive care unit at the start of her shift. (Photo by Ryan Loew/PublicSource)

These infants, advocates say, could be at risk for abuse and neglect in some cases. How best to help them and their families is a pressing issue for workgroup of more than 50 Pennsylvania government leaders, healthcare providers and child safety advocates.

Proposed federal legislation — announced in April — would make $60 million available to help states implement their plans. U.S. Sen. Robert Casey, a Democrat from Scranton, introduced the bill. The proposed measure is part of the Opioid Crisis Response Act, awaiting further consideration in the Senate, and could get rolled into a package aimed at addressing the opioid epidemic, said Jacklin Rhoads, deputy communications director for Casey.

Rhoads pointed out that Casey also championed the Plan of Safe Care Improvement Act of 2016 to provide greater direction for states to meet the requirements.

“Unfortunately, despite the federal law, states have struggled with implementation,” Rhoads said. “...Funding has not kept up with the need, especially during the current opioid epidemic when increasing numbers of infants are being born with neonatal abstinence syndrome and more children are ending up in the child welfare system because of their parents’ struggles with opioid use disorder.”

Cathy Utz, the deputy secretary of the Department of Children, Youth, and Families, acknowledged the delays and challenges in an interview late last year. “It’s complex, so in order to make sure we are successful we are trying to make sure we are doing our due diligence.”

Part of the challenge facing the state workgroup is how to coordinate services for newborns born into addiction as well as expectant mothers. Reducing the risk in the home means addressing the parents’ addiction, said workgroup member Cathleen Palm, executive director of the Center for Children’s Justice in Berks County. She added that the state should work to engage families earlier, “and we have to do it from a public health perspective.”

Opioids killed more than 42,000 people nationwide in 2016, more than any year on record, according to the Centers for Disease Control and Prevention [CDC].

Though not all states have tracked the data, an estimated 21,732 infants nationwide were born with NAS in 2012. According to the CDC, that figure represented a fivefold increase in the proportion of babies born with NAS from 2000 to 2012.

The rate of Pennsylvania babies identified with NAS, per 1,000 newborn stays, increased more than 1,000 percent from 2000-01 to 2016-17, according to the Pennsylvania Health Care Cost Containment Council, which gets its data from hospitals statewide.

Palm said the state is in a “much better position since the governor made the disaster declaration” because it created a greater awareness of the need to coordinate efforts to address the issue.

“That said, there is still a challenge that local hospitals are dealing with today [where] the reality is, we have an infant that’s born drug-exposed and everyone is kind of doing their practice different,” she said. “The practice is too disjointed and too subjective. That is furthering the stigma.”

The safety net

While many local governments, hospitals and nonprofits have programs to help families affected by addiction, the Child Abuse Prevention and Treatment Act of 2016 calls upon states to take measures.

In response, a pilot program could roll out to counties this fall, Day said. Details will be made available as the plan is developed, he added.

Which agencies would lead changes at the county level remains a point of concern. Matters involving children have largely fallen to county child protection bureaus, but several people studying the issue said the approach would likely involve multiple organizations.

“You need some centralized door. For better or for worse, the centralized door is the child welfare door,” Palm said. However, she added, “We don’t want to suggest that drug use in and of itself is child abuse.”

Amy Sula, an integration support manager for Allegheny County Children Youth & Families [CYF], called the state’s approach “a multidisciplinary effort” that extends to CYF, the health department and community public health organizations.

“There are safe plans of care that can and should be developed without the child welfare system,” Sula, a workgroup member, said late last year.

Bree Swarmer credits her daughter, Brinlee, for helping her to stay clean. “She saved my life,” Swarmer said. (Photo by Maranie Rae Staab/PublicSource)

When a child welfare agency is still the first call, as it is for many hospital personnel, it can be daunting for a new mother.

“One of the big misnomers about child welfare is that we call child welfare and now something’s going to happen,” Palm said. “Short of there being child abuse, and oftentimes there’s not ... all cases are voluntary.”

New Stanton resident Bree Swarmer, 25, struggled with addiction before her daughter was born. She said she was taking methadone to curb opioid cravings when she was pregnant — a widely accepted practice. Her daughter, Brinlee, went through withdrawal after she was born.

She said children and youth services were not involved in her case, but that agency support would be helpful for some parents in active addiction or recovery.

“Not only are you an addict but then you have a screaming baby,” she said. “If I wouldn't have had my mom, I wouldn't have stayed sober. It’s so stressful.”

A generation scarred

Watson, a Republican from Bucks County, said she’d like healthcare providers involved in the delivery of a child to put “the appropriate county agency” on notice any time an infant is born affected by or exposed to drugs, illegal or legal. Legislation to do just that — Bill 1707 — is in her committee.

State law now requires reporting only if the drug is illegal, though some hospitals may individually choose to track and report any case in which a child is affected by substances.

She said this would serve to address a common type of case reported to children bureaus across Pennsylvania last year: a parent or caretaker abusing a substance but their actions don’t constitute abuse of the child, only risk.

Known as “general service reports,” county agencies assess the information and determine if they can provide services to reduce the risk of harm.

In 2016, there were 64,000 substantiated general service reports; of those, 1 in 5 were related to parental substance abuse, according to an annual DHS report.

County caseworkers bear witness to the effects of parents who may be struggling to overcome addiction while also caring for a new baby— a baby that may be extraordinarily fussy or have sleeping problems.

“That’s probably the most stressful type of case for a caseworker,” said Shara Saveikis, executive director of the Westmoreland County Children’s Bureau. Even if the parent or caregiver is meeting the child’s needs, she said, there’s the potential that they “spiral into full addiction or to a point where it then meets the threshold for removal.”

(Photo via Unsplash)

Marc Cherna, director of the Allegheny County Department of Human Services, said during a November Facebook Live interview with PublicSource that about 40 percent of the children referred to his agency are there because of the opioid epidemic. He said the true figure is likely closer to 60 to 65 percent and that those cases just aren’t being identified as opioid related.

Those who see the effects of drugs on parents — whether in recovery or not — say it’s sometimes difficult to gauge what type of help to offer and when.

“If you have a [caregiver] who is addicted, how do you determine when they are better?” said Charles Johns, director of Butler County Children and Youth. “Even though we are trying to get a lot better in this area, we are not educated in addiction rehabilitation. It’s tough to acknowledge this mom is fine on her own. How do you know?”

While social services are trying to get up to speed, Watson said she would like to see Pennsylvania work to remove the fear of seeking help, especially for pregnant women.

“We need to get rid of the stigma. That baby comes into this world innocent. Our responsibility as the adults in society is to look after the children in society, and if they need help we need to help them,” she said.

“We may have a whole generation scarred by this, and that can’t be undone. That’s not acceptable. Government is there to help people who cannot help themselves.”

Kimberly Palmiero is a journalist based in Pittsburgh. She can be reached at kimpalmiero@gmail.com.

This story was fact-checked by Abigail Lind.

Edited by Halle Stockton and Mila Sanina.

Web design and development by Natasha Khan.

This project has been made possible with the generous support of the Staunton Farm Foundation.

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