States are receiving funding under the federal Child Abuse and Prevention Treatment Act (CAPTA) to support child protection services, as amended by the Comprehensive Addiction and Recovery Act (CARA) in 2016. Under CAPTA/CARA, states must have a system in place to identify and report to child protective services (CPS) infants who present with substance withdrawal symptoms that indicate NAS, as well as a process for developing a Plan of Safe Care (POSC) that addresses the health needs of both the infant and the parent or caregiver. Pursuant to CAPTA, most states direct healthcare providers to report infants who present with symptoms consistent with prenatal exposure to drugs or alcohol to CPS. Many states specify that a report of NAS to CPS is not a de facto finding of child abuse or neglect, an approach taken to dissociate involvement of CPS from punitive measures and to incentivize providers to make the referral. Further complicating matters, while best practice is to treat pregnant people with OUD with medication for opioid use disorder (MOUD), pregnant people with OUD may be hesitant to engage with the health care system due to fear of repercussions from the criminal legal system and CPS. In practice, seeking the trust of patients to receive treatment is sometimes in conflict with the requirement to report babies with NAS diagnoses.
Defining NAS. While CAPTA/CARA created a reporting obligation for infants with NAS, the federal legislation did not standardize definitions nor the processes to be used for data collection within states. To implement federal law, states must define NAS, including how providers should diagnose the syndrome and when and how they are required to report infants. While some states use and define the term “NAS” in state statute, states may also use terms such as “substance exposed infants or newborns,” “opioid-dependent mothers,” “substance-affected infants,” and other variations. Table 1 provides a comparison of approaches to defining NAS across the states featured in this report. States also differ in how they structure NAS reporting requirements: mandated reporters include individual healthcare providers and/or health care facilities, such as hospitals and birthing centers. Reporting methods range from comprehensive forms completed by providers to passive hospital registries with compiled infant diagnosis codes. Timing of reporting can occur within a few days of diagnosis or as part of regular chart review.
Table 1: Select State Definitions of NAS
||Not defined in statute. The NAS Registry collects information from Kentucky hospitals on Kentucky resident children who experience signs and symptoms consistent with NAS, and who have a confirmed or suspected history of prenatal substance exposure. Case reporting is not tied to any specific International Classification of Disease (ICD-9 or ICD-10) code.
||State surveillance definition of NAS, 2020. The clinical diagnosis of an infant in the neonatal period (birth up to 28 days of life) who has symptoms of withdrawal because of chronic in utero exposure to opioids, benzodiazepines, or barbiturates, either via prescription, medical therapy (MAT), or illegal use (including but not limited to ICD-10 codes P96.1 and P04.49, P04.14, P04.17, if available)
||CSTE Standard Definition: Beginning in June 2020, the Tennessee Department of Health implemented the (CSTE) NAS Standardized Case Definition, which is a neonate (<28 days old) with a report or identification (in the absence of another known cause/diagnosis) of a diagnosis of NAS with confirmatory neonatal laboratory evidence; or a chief complaint of NAS with confirmatory neonatal laboratory evidence; or a clinically compatible presentation with 3 or more signs of neonatal withdrawal and with confirmatory neonatal laboratory evidence.
||Admin. Code § 5101:2-1-01.
‘Substance-affected infant’ means a child under 12 months old who has any detectable physical, developmental, cognitive, or emotional delay or harm that is associated with a parent, guardian, or custodian’s abuse of a legal or illegal substance, excluding the use of a substance by the parent, guardian, or custodian as prescribed.
‘Substance-exposed infant’ means a child under age 12 months who has been subjected to legal or illegal substance abuse while in utero.
Managing Data Sets. NAS data are generally reported to two different state entities – the agency for child protection services in order to create a POSC pursuant to CAPTA/CARA, and the department of public health for public health surveillance purposes and to address maternal opioid use disorder (OUD) and drug-associated maternal mortality. Medicaid claims data, including procedure and diagnosis codes, frequently play a key role in state efforts to track NAS as well. Although these data sets are created for different purposes, they tell alternate sides of the same story. When combined, these data sets have the potential to help states prevent both NAS and maternal mortality by addressing maternal substance use. Despite siloed data systems, states are making efforts to link, share, and leverage data in order to address NAS and OUD and improve maternal and child health outcomes. Linking these data sets also has the power to help states realize significant cost savings, as state Medicaid programs continue to bear the majority of NAS and maternal substance use cost burden, as is demonstrated in Table 2.
 As is demonstrated in this report, various state sources (e.g., statute, Medicaid agencies, departments of health, as well as peer reviewed literature, etc.) define and use NAS-related terms differently, including those that indicate gender. Terms like “maternal mortality” and “opioid-dependent mothers” are interpreted by policymakers as not wholly inclusive of or accurately representing the pregnancy experiences of transgender and nonbinary individuals; some sources indicate this in non-gendered language.