Every state has been screening newborns for several decades, usually performing a heel-prick blood test, a hearing test and a heart check.
Several disorders diagnosed through newborn screenings can be treated and their effects significantly reduced when caught early.
Sen. Ben Hansen, R-Blair, said Nebraska is one of only three states without a provision for parents to "opt out" of newborn screening for religious or other reasons. His bill, Legislative Bill 1060, would change that.
Hansen noted constituents brought this issue to his attention, pointing out refusing the screenings can result in a lawsuit, lack of a birth certificate and even the possibility of the state taking a child away.
"That kind of philosophically goes against my idea of a parent's liberty to either object or accept doing a test such as this," Hansen explained.
In 2008, Nebraska's Department of Health and Human Services temporarily removed a child from parents who refused the newborn screening based on their religious beliefs. The case reached the Nebraska Supreme Court, which determined the state's mandated screenings do not violate the free exercise of religion provisions in the Nebraska Constitution. The court noted the screenings test for conditions which, untreated, "can lead to mental disabilities, loss of hearing, loss of vision, irreversible brain damage, or death."
Hansen stressed his bill only leads to a change in the state's newborn screening protocol if the parents or guardians specifically request it.
"Only if the parent actually engages with the hospital or the doctor and says, 'Hey, look, I do not want this test on my child,'" Hansen emphasized. "It's not like when you go to the hospital to have a baby, the doctor says, 'OK, so do you want to have this test done?' They don't even ask that question; it's just done."
Julie Luedtke managed Nebraska's Newborn Screening Program for 24 years before retiring. She is concerned about treatable disorders being missed if parents opt out of newborn screenings.
"Every year, just in Nebraska, somewhere between 50 and 60 babies with one of these clinically significant diseases gets identified, and gets into treatment, and has these terrible things prevented," Luedtke stressed.
When she managed the screening program, Luedtke surveyed her peers in states with an "opt out" provision, asking whether any babies whose parents opted out of the screenings were later found to have disorders. She noted there were a number of them, including a baby who died at eight days of age from galactosemia, the inability to process the sugar galactose present in breast milk, cow's milk and other dairy products.
"She's feeding her baby, not knowing that's basically killing the baby," Luedtke recounted. "If they'd done the screen and gotten the results back, they'd know to get that baby changed right away and onto a soy formula, and the baby would have been fine. Sadly, that baby died."
The measure had its first hearing on Jan. 31 in the Health and Human Services Committee. As yet, no further action has been taken.
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A screening tool developed by medical providers is an effective way to spot signs of child abuse, and experts are raising awareness about it today.
The TEN-4 rule stands for "Torso, Ears and Neck," an easy-to-remember prompt to examine high-risk bruising on young children that should be considered as a red flag for abuse.
Tamara Brown, director of the Health Access Nurturing Development Services (HANDS) program at Family and Children's Place Jefferson County, said the home visitation program that provides resources for new or expectant parents includes education on the TEN-4 rule to help people spot any potential signs of abuse of their child or neighbors' and friends' children.
"We work with children under the age of two and prenatal families," she said, "and what we are hoping is that we can really provide a lot of support for those most vulnerable populations. Children under two are the highest-risk group for death through child abuse."
Kentucky's rate of child abuse decreased in 2022, but the number of reported abuse and neglect cases in the state still surpasses the national average, according to federal data. Around a dozen Kentucky kids out of every 1,000 experienced some form of maltreatment during 2022.
For more information on the rule, visit faceitabuse.org/ten4rule.
Dr. Melissa Currie, professor and endowed chair for pediatric forensic medicine at the University of Louisville School of Medicine, explained that bruising - particularly on babies - isn't normal. It can be a sign of something serious: If not abuse, then a bleeding disorder or even cancer.
"It does not necessarily mean that it's abuse," Currie noted. "That said, the rule helps us determine high-risk bruising with enough specificity that if a child screens positive, they definitely need medical workup, and they need it right away."
Barry Dunn, president and CEO of Kosair for Kids, the group that created the TEN-4 Day observance, said all Kentuckians have a role to play in preventing child abuse and neglect.
"We are proud of the progress that we've made. That drop is big," he said. "We've gone from worst in the nation to 14th worst. We're not going to plant a flag with that advancement, but it is a data point."
If you suspect a child is being abused or neglected, contact the statewide Child Abuse Hotline at 877-597-2331 to make a report.
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On the heels of warnings from federal health officials about parent burnout, school-linked programs in Minnesota are overhauling their approach so that families don't feel isolated. The Surgeon General's office says 33% of parents nationwide report high levels of stress in the past month compared with 20% of other adults, noting the lingering effects of the pandemic and any financial hardships, as well as a household having to navigate technology and social media.
Keem Anderson, associate director of the statewide Ignite Afterschool initiative, said it's something they've noticed.
"We've been seeing parents struggling with their mental health, right? Having to pick up a couple extra jobs because of the economy," Anderson explained.
He said those added stressors, worsened by the pandemic, are negatively impacting parent engagement with a child's academic life, including out-of-school programs. To improve connections, Anderson said they're rethinking how they ensure parents feel supported, such as addressing transportation gaps or giving them opportunities to volunteer. Ignite Afterschool plans to hold listening sessions on this topic in the near future.
The Children's Defense Fund's Freedom Schools effort - which offers educational and cultural enrichment for kids and their families - partners with a dozen schools in Minnesota.
Paris Timmons, assistant director of Extended & Experiential Learning and Academic Recovery, and executive director of Freedom Schools, leads this program for Hopkins Public Schools, and said part of the approach is figuring out how to communicate with parents in an ever-changing world.
"It's really hard to build a relationship via words on a screen versus a phone call, versus an in-person meeting," she said.
Timmons suggested her team and other support programs need to be more intentional about speaking with parents so they're aware of what's happening in and out of school. That might look like following up a text or email with that phone call or face-to-face meeting. Freedom Schools has prioritized weekly parent empowerment sessions, so that key messaging doesn't get lost in the shuffle.
Disclosure: Children's Defense Fund- Minnesota Chapter contributes to our fund for reporting on Budget Policy & Priorities, Children's Issues. If you would like to help support news in the public interest,
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September has been National Kinship Care Month, and more than 80% of Kentucky kinship families say they need help with groceries, followed by clothing, school supplies and other basic needs, according to a new report.
Because of budget constraints, the state placed a moratorium on its Kinship Care Program that previously allotted monthly payments of $300 per child to kinship caregivers stepping in as an alternative to foster care.
Shannon Moody, chief policy and strategy officer for Kentucky Youth Advocates, said a growing number of these families are navigating an often confusing child-welfare system.
"There are estimates that we've got about 55,000 children being cared for by relatives or close family friends in some sort of kinship care setting, whether that's child protective service-involved or not," she said, "and we do believe there are probably more than that."
Child care and mental health care were also listed as top priorities in the survey, by Kentucky Youth Advocates and the Kinship Families Coalition of Kentucky.
Norma Hatfield, president of the coalition, has spent the past decade raising two grandkids. She said most caregivers, especially grandparents, aren't financially equipped to suddenly take on full-time caring for children.
"Kentucky has done a lot to try to provide more support, but the needs are still there," she said. "It costs to raise children today, and that doesn't change."
Moody pointed to Senate Bill 151, signed into law by Gov. Andy Beshear earlier this year, as a sign of progress on policies aimed at improving the lives of kinship families. The law allows relatives or close friends, known as "fictive kin," to apply for certification as a foster home, and allows kids a say in where they live after they've been removed from their home.
However, Moody said more work is needed to expand community resources "to ensure that we are providing really comprehensive supports, including counseling and mediation services, in order for the that triad - the birth parent, the grandparent or other relative and the child - to get what they need."
The report also calls for more investments in peer support groups, using opioid settlement money to increase resources for kinship families, and better training for state and foster-care agencies and community mental-health providers on the unique needs of kinship families.
Resources for kinship families in the state are online at kinshipky.org.
Disclosure: Kentucky Youth Advocates/KIDS COUNT contributes to our fund for reporting on Budget Policy & Priorities, Children's Issues. If you would like to help support news in the public interest,
click here.
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