NASHP

State Approaches to Leveraging Neonatal Abstinence Syndrome Data to Inform Policymaking

By Eliza Mette, Jodi Manz, Kitty Purington, and Mia Antezzo

The ongoing substance use disorder (SUD) epidemic across states is  driving increased rates of Neonatal Abstinence Syndrome (NAS), a series of symptoms in newborns who have been exposed in utero to certain substances. Between 2010 and 2017, the rate of NAS diagnoses across states increased by 82%, indicating an urgent need for policies that support SUD treatment and early intervention for pregnant and parenting individuals. Rates of NAS are also disproportionately high in babies born to people who are uninsured or covered by Medicaid. Babies diagnosed with NAS born to Medicaid-covered parents spend more time in the hospital and cost more than babies with NAS born to privately insured parents. Overall, Medicaid covered 83% of the costs for NAS births and services, underscoring the significant cost of NAS treatment for states.

This report, informed by discussions with state leaders in Kentucky, Ohio, Pennsylvania, and Tennessee, highlights state approaches to NAS data collection, analysis, and cross-agency data linkage, and how states leverage these data to inform better policy and improve health outcomes for both parents and infants. State leaders focused on a number of lessons learned regarding how to use state data sets to understand the prevalence of NAS and how to leverage this understanding to inform strategies that improve access to care for pregnant people, with the goal of preventing NAS:

  • Link NAS and other SUD-related data sets, like prescription drug monitoring program (PDMP) data, to better understand NAS-affected babies and parents. States are linking NAS and PDMP data so as to better complete the picture of parental substance use and NAS.
  • Identify high risk pregnancies through standardized data collection and develop prenatal plans of safe care. States have developed tools to identify pregnant people who may be at increased risk of having a child born with NAS to support the application of interventions earlier in the cycle of substance use.
  • Promote cross-agency data sharing and collaboration to streamline processes and improve outcomes. States that facilitate inter- and intra-agency data sharing are better able to understand NAS risk factors and outcomes, and the complexity of the circumstances that culminate in an NAS diagnosis.
  • Emphasize transparency in data collection and reporting. Robust data collection and reporting allows states to identify trends in causes of NAS and quickly recognize how policy impacts outcomes.

Federal Mandates and NAS Reporting

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.[1] 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

State Definition
KY 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.
PA 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)
TN 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.
OH 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.

[1] 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.

Upcoming Webinar: State Data Approaches to Neonatal Abstinence Syndrome, will feature leaders from two of the states highlighted in the brief as they discuss approaches to data collection and analysis and cross-agency data linkages. Register Now!

Neonatal Abstinence Syndrome (NAS) Defined

Infants with NAS present with respiratory problems, severe irritability, difficulty feeding, seizures, and other symptoms. Timing of symptom development and length varies, but NAS typically presents between 48 hours and 4 days old and may necessitate as many as 3 weeks of inpatient treatment.

Although it is important to quickly identify and treat infants that present with NAS, ensuring parental access to treatment and support services plays an integral role in determining long-term outcomes for substance-exposed infants.

State Case Studies

Kentucky: Linking NAS and prescription drug monitoring program (PDMP) data to better understand NAS-affected babies and parents.

Kentucky, after collecting and reporting NAS data for both public health surveillance and CPS involvement for the better part of a decade, has more recently begun to leverage PDMP data to gain insight into the connection between parental use of prescribed medications for opioid use disorder (MOUD) and infants born with NAS.

The Kentucky General Assembly established NAS as a reportable disease in 2013, and in 2014, the state began requiring reporting to the Public Health NAS Reporting Registry (NAS Registry). Using the state’s NAS Reportable Disease Form, Kentucky hospitals report data regarding infants with prenatal substance exposure and who present with NAS symptoms to the NAS Registry. The state then links NAS cases with Certificates of Live Birth to learn more about the infants born with NAS, such as prenatal and perinatal care history, and generate a comparison group. Data reported to the NAS registry are privileged and confidential and are published in aggregate form in an annual report by the Kentucky Division of Maternal and Child Health (DMCH) within the state’s Department for Public Health (DPH).

Separate from the mandated public health reporting process, Kentucky hospitals must make NAS referrals to the Department of Community Based Services (DCBS) as clinically appropriate and as required by law. Of the 85% of infants with NAS referred to DCBS, 76% warranted investigation and further action by DCBS. The state learned through its NAS reports that the most common substance in the NAS Registry is the MOUD buprenorphine, which may be due to increased access to MOUD throughout the state. Although over half of mothers of babies with NAS were receiving MOUD, less than two-fifths reported taking such medications as prescribed.

Kentucky’s DPH is developing a memorandum of understanding (MOU) with its Office of the Inspector General (OIG), which maintains the Kentucky All Schedule Prescription Electronic Reporting (KASPER) program to determine which parents within the NAS registry have been prescribed MOUD. The state’s Department for Medicaid Services (DMA) is housed within the Cabinet for Health and Family Services along with DPH and OIG, which removes many of the administrative barriers to entering into an MOU. DPH has examined de-identified KASPER data to analyze opioid prescribing rates among uncomplicated vaginal and c-section births at hospitals across the state and found significant over-prescribing, the details of which are not reflected in electronic records. DPH has also collaborated with DMS to link NAS data to Medicaid claims data and examine emergency room utilization, well child visits, and immunization. Compared to non-NAS Medicaid recipients, infants with NAS are significantly behind on immunizations, well child visits, and are three times more likely to utilize the emergency room.

Ohio: Identifying high risk pregnancies through standardized data collection.

Beginning in 2014, Ohio Code required maternity units, newborn care nurseries, and maternity homes to report NAS diagnoses to the Ohio Department of Health. Ohio is one of 11 states that utilizes a state supervised, county administered approach for NAS referral and plan of safe care development. This means that each of Ohio’s counties operates independently with oversight provided by the Ohio Department of Job and Family Services. Ohio’s Administrative Code specifies the reporting process for infants identified as being affected by substance exposure and the required elements for the POSC. Although the regulations apply statewide, interpretation and response may differ from county to county. Referrals from hospitals may differ, including which cases are referred and what information is shared with child welfare agencies for POSC development purposes. Several of Ohio’s counties have started developing POSC during the prenatal period in an attempt to destigmatize the involvement of CPS and improve outcomes for both parents and babies. All of the sites that have been able to implement prenatal POSC have indicated that doing so was beneficial and helpful to both parents and CPS.

Ohio is involved in the Practice and Policy Academy: Developing a Comprehensive Approach to Serving Infants with Prenatal Substance Exposure and their Families sponsored by the National Center on Substance Abuse and Child Welfare (NCSACW) and Children and Family Futures. The Chief of the Bureau of SUD Treatment at the Ohio Department of Mental Health and Addiction Services leads the project working with nearly a dozen agencies, including the Ohio Perinatal Quality Collaborative. The Practice and Policy Academy is working through cross-agency collaboration to standardize the NAS notification and reporting process across all of Ohio’s counties.

The Ohio Violence and Injury Prevention Section within the Ohio Department of Health (ODH) houses NAS hospital reporting data. ODH partners with the Ohio Hospital Association to receive aggregate data on hospital discharges associated with NAS, which relieves hospitals of the reporting burden. According to 2018 data, 5,577 mothers were diagnosed with drug abuse or dependence at delivery, and 1,954 misused or were dependent on opioids. ODH suggests that all healthcare organizations that provide care to pregnant people, including behavioral health organizations, would benefit from implementing a maternal care home model similar to the maternal opiate medical supports (MOMS) programs.

The state has also begun using a pregnancy risk assessment form (PRAF) to identify people who are at risk for pre-term birth. Initially designed to identify people who would qualify for progesterone, the form has evolved to identify other risk categories, including OUD. There were initial concerns about conflicts with 42 CFR Part 2, federal law that places limitations on SUD data sharing, but those concerns have since been assuaged. A patient’s obstetric care provider can use the form to notify a managed care organization that a patient is pregnant, has an OUD, and could benefit from additional support services. The services that Medicaid managed care organizations provide, how consistent such services are between rural and urban areas, as well as how accessible they are, varies across the state. Providers are reimbursed for submitting the PRAF at a current reimbursement rate if $90 for the first prenatal visit. The state’s Medicaid agency is also in the process of analyzing claims data for both NAS infants and parents with OUD as part of the state’s work in studying the maternal infant dyad during the first year postpartum.

Pennsylvania: Leveraging a public health emergency declaration to promote cross-agency data sharing.

 In January 2018, Pennsylvania Governor Wolf declared the opioid crisis a public health emergency, under which NAS became a reportable condition to the Pennsylvania Department of Health. With the intention of informing state and local NAS responses, Pennsylvania began the process of rapidly generating deidentified aggregate NAS data to better understand the NAS burden across the state, identify areas of high disease burden and allocate resources accordingly, and ultimately decrease the number of NAS cases in the state. The opioid disaster declaration has been renewed multiple times, most recently in May 2021, in order to continue the progress made over the past several years toward improving outcomes for families affected by the opioid epidemic.

Pursuant to the Governor’s opioid disaster declaration, the Pennsylvania Bureau of Epidemiology developed a NAS surveillance case definition for health care facilities to use when considering making a report to the Department of Health, in addition to a web-based NAS reporting system. Several state agencies collaborated as part of the Multi-disciplinary Workgroup on Infants with Substance Exposure (MDWISE) to develop Plan of Safe Care (POSC) guidance for local service providers. Since January 2020, NAS cases are reported to the Pennsylvania Division of Newborn Screening and Genetics via the state’s Internet Case Management System (iCMS), and the case definition has been expanded to include exposure to barbiturates and benzodiazepines, consistent with the national Council of State and Territorial Epidemiologists (CSTE) NAS position statement.

Multiple programs within the Pennsylvania Department of Health are involved in NAS data linkage projects, the results of which are currently being interpreted. Because of their co-location, these programs collaborate and coordinate comprehensive data in order to better understand NAS burdens, outcomes, and risk factors. The Department encourages data sharing as much as possible, and, through data linkage, is able to consider the significance of what happened pre- and post- NAS diagnosis rather than viewing that diagnosis as a single point in time.

  • The Department of Health in the process of entering into a data use agreement that is intended to allow for better allocation of state resources. Under this agreement, the Department of Health will take responsibility for and provide linkage and support services to pregnant people identified as adhering to MOUD as prescribed, or lower risk cases. In turn, the Office of Children, Youth, and Families will track and provide support services to pregnant people identified as using substances not as prescribed, or higher risk cases.
  • The data collection tool (Excel File) used by the Bureau of Epidemiology for NAS case notification includes entries for maternal MOUD, type of medication prescribed, etc. Using funds from a CDC Overdose Data to Action grant, Pennsylvania is in the process of linking NAS and PDMP data, a process that will additionally link and incorporate hospitalization discharge data, birth records, and death records. Additionally, Pennsylvania’s Maternal Mortality Review Committee can query the state’s PDMP. The state would like to eventually link NAS data to Medicaid claims data as well.

Tennessee: Emphasizing transparency in data collection and reporting.

Starting in 2013, Tennessee was the earliest state to adopt mandatory NAS reporting and public health surveillance – providers must report a NAS case within 30 days of diagnosis. NAS cases are reported to the Tennessee Department of Health (TDH) at the time of diagnoses using the NAS Reporting Portal. TDH recently began the process of implementing a new standardized NAS case definition using funding from CSTE in order to improve consistent NAS case identification and reporting practices across states over time. The state publishes NAS data reports weekly, monthly, and annually – the most recent of which is the NAS Surveillance Annual Report 2020.

This report indicates that, among infants diagnosed with NAS, 62% were exposed to MOUD, 65% were exposed to at least one prescribed medication, and 88.4% with exposure to only prescription drugs were exposed to MOUD. Since 2013, the state has seen a shift in source of exposure for infants born with NAS, as parents of infants born with NAS are increasingly taking prescribed MOUD. According to 2018 Tennessee Medicaid (TennCare) data, mothers with one or more TennCare-covered opioid prescriptions were prescribed, on average, 7.3 opioid prescriptions from 1.6 unique prescribers. Of the mothers of infants born with NAS who were prescribed opioids, nearly 40% were likely receiving treatment for OUD, although methadone clinics were not covered by TennCare at the time of the report.

In response to the increase in NAS cases it experienced in the early 2000s, Tennessee convened a Commissioner-level sub-cabinet working group from 2012-2019 with representation from the Departments of Health, Children’s Services, Mental Health and Substance Abuse Services, TennCare, Safety and Homeland Security, and the state’s Children’s Cabinet. The goals of the work group were to align and coordinate NAS surveillance and prevention efforts across state agencies and to facilitate better data sharing. Around the same time, TDH collaborated with providers and public health professionals across the state to develop NAS reporting criteria that would generate robust data without significantly increasing reporting burdens, ultimately leading to better policy development. TDH has distributed weekly surveillance data to stakeholders, health care providers, and other state agencies for years now, and Tennessee has used these surveillance data to inform policy implementation, drive allocation of resources, and tailor prevention strategies; one local health department began offering family planning services within a methadone clinic in response to its NAS case rate, and a third-party payer provisionally provided SUD services in a rural primary care clinic.

Using State Data to Support Policy

Maternal Mortality/Perinatal Quality Data

The dramatic uptick in NAS cases in the U.S. has been driven in part by the opioid epidemic, which has also contributed to maternal mortality: substance use has been identified as a major risk factor for pregnancy-associated deaths. The standard of care for pregnant women with OUD is treatment with MOUD and behavioral health counseling, although fewer than 25% of pregnant women with OUD receive evidence-based treatment. Fear of punitive measures or involvement of child protective services may be a factor in discouraging people who use substances while pregnant from seeking treatment for SUD treatment or prenatal care. Although NAS and drug-associated maternal mortality have substance use as a common denominator, it is not always straightforward to link these data sets and use them to inform better health policy.

Across the country, states have created maternal mortality review committees (MMRCs), which are multidisciplinary teams tasked with reviewing maternal mortality data to determine to what extent pregnancy and other factors contribute to the mortality rate, in addition to discerning trends within and preventability of maternal deaths. Frequently, MMRCs collaborate with state Perinatal Quality Collaboratives (PQC), which aim to improve both prenatal and antenatal care and outcomes for parents and babies. Together, these teams have access to overdose data, Medicaid claims data, and NAS data, all of which can be used to assess the impact of SUD on families. Using these data sets, MMRCs publish comprehensive maternal mortality reports and recommendations to address drivers of maternal mortality.

Table 2: Types of Data Generated from State Collaborative Workgroups

State SUD in pregnancy-associated maternal deaths % of Medicaid Maternal Deaths PDMP- NAS data linkage % of NAS Deliveries covered by Medicaid Babies with NAS born to parents on MOUD
KY Substance use was a contributing factor in 46% of maternal deaths. Yes 74.4% of deliveries of babies born with NAS was paid for by Medicaid 55% in 2019, but rate of compliance was only 37%
PA Accidental poisoning (including drug-related deaths) was the leading cause of pregnancy-associated death in PA from 2013 to 2018. The number of accidental poisoning, pregnancy-associated deaths was nearly 3 times higher in 2018 (41) than in 2013 (16) Among pregnancy-associated deaths between 2013 and 2018 with payment information from birth available, 53% of births were paid for by Medicaid Yes The primary payer was indicated as Medicaid for 87 % of mothers to infants with NAS compared to 34% of 2017 statewide births
OH 46 overdose deaths among women who were pregnant or within one year of pregnancy Between 2008 and 2016, 74.2% of pregnancy-associated deaths were paid for by Medicaid. No Approximately 90% of hospital discharges for NAS were covered by Medicaid in 2018.
TN SUD contributed to 34% of all pregnancy-associated deaths from 2017-2019. 68% of pregnancy-associated deaths were among women with TennCare at delivery. Yes 2.4% of TennCare enrollees are NAS babies ~ 37% of women on TennCare with NAS babies who received opioid prescriptions received MOUD*

*TennCare did not cover methadone clinic services during the time frame covered by this report (Data source: Neonatal Abstinence Syndrome (NAS) among TennCare Enrollees: 2018 data).

Considerations for States

Based on its conversations with state policy officials from Kentucky, Ohio, Pennsylvania, and Tennessee, NASHP has identified the following as considerations for states as they continue to tackle NAS, OUD, and maternal mortality:

  • Define data components and processes to collect the richest data possible from all facilities. In the absence of comprehensive NAS data collection tools, states may end up with an incomplete representation of the scope of diagnoses. Several states have facilitated inter-agency collaboration to develop thorough data survey and collection tools in order to generate robust NAS data, while others have requested feedback from health care facilities and providers when updating their case definitions and data collection tools.
  • Coordinate internally across agencies that work with similar data systems and maintain one central locus of responsibility. Parallel state agencies frequently collect similar data sets or data sets that, when combined, would elucidate the specific set of circumstances that has led to a NAS birth. By working across agencies, bureaus, and programs, states can develop more well-rounded understanding of NAS and maternal OUD burdens, outcomes, and risk factors.
  • Streamline case definition and screening and referral processes. Disparate processes result in disparate outcomes. States have worked towards refining NAS case definitions and streamlining NAS screening protocols and NAS referrals processes so that they may appropriately refer NAS cases that truly need CPS management, while screening out cases that do not warrant CPS involvement. Engaging in this process state-wide helps to ensure that standards are enforced consistently and that families that would benefit from additional support are able to access those services as needed. Some states have developed toolkits and guidance for health care providers to make the screening and referral processes easier and less burdensome.
  • Start Plans of Safe Care during the prenatal period. Developing Plans of Safe Care during the prenatal period can lead to better relationships between families and child protective services, destigmatize the involvement of CPS, and improve outcomes for both parents and babies. Other states have expressed interest in doing this but have yet to take that step.

Acknowledgements: The National Academy for State Health Policy is providing this brief with the ongoing support of the Foundation for Opioid Response Efforts (FORE) and thanks FORE Project Officer Ken Shatzkes and FORE President Karen Scott for their continued guidance and direction. The authors would also like to thank state officials from Kentucky, Ohio, Pennsylvania, and Tennessee, who generously shared their time and valuable insight during drafting and review process for this brief.

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