The Maternal and Child Health Block Grant Application and Annual Report, submitted annually to the MCHB, provides an overview of initiatives, State-supported programs, and other State-based responses designed to address the MCH needs in NJ. FHS in the NJDOH Public Health Services Branch posts a draft of the MCHBG Application and Annual Report to its website in the second quarter of each calendar year to receive feedback from the maternal and child health community.  The mission of the Division of FHS is to improve the health, safety, and well-being of families and communities in NJ. 

In 2023, NJ's population density was 1,263 to 1 compared with 93 to 7 nationally. There are 564 municipalities and 21 counties in NJ. In 2022, based on statistics released by the Census Bureau the most populated counties in NJ are in the northern part of the state; these are Bergen, and Essex counties, with a population of 953,540 and 851,117, respectively.

According to the 2023 population estimates of race, 52.9% of the population were White non-Hispanic; 15.4% Black; 10.5% Asian; 0.1% American Indian and Alaska Native; and 2.4% reported two or more races. In terms of ethnicity, 21.9% of the population was Hispanic. The 2022 American Community Survey identified that 32.3% of NJ residents speak a language other than English at home, compared to 22.0% nationally.

The racial and ethnic mix for NJ mothers, infants, and children is more diverse than the overall population composition.  According to 2022 birth certificate preliminary data, 28.8% of mothers delivering infants in NJ were Hispanic, 45.58% White, non-Hispanic, 12.06% Black, non-Hispanic, and 10.21% were Asian, non-Hispanic. The growing diversity of NJ's maternal and child population raises the importance of addressing disparities in health outcomes and improving services to individuals with diverse backgrounds.

MCH priorities continue to be a focus for the NJDOH. FHS, the Title V agency in NJ, has identified 3 priority goals for the MCH population: 1) improving access to health services thru partnerships and collaboration, 2) reducing disparities in health outcomes across the lifespan, and 3) increasing cultural appropriate services. These goals are consistent with the Life Course Framework, which proposes that an interrelated web of social, economic, environmental, and physiological factors contribute to good health and well-being through the course of a person’s life and across generations. Moreover, the timing and severity of both protective and risk factors propel individuals and communities toward certain health statuses.  This framework undergirds the work of the State’s TVP as it endorses a person-in-environment perspective, positing that the interplay of multi-level forces influence individuals and families.

Social determinants of health, the conditions in which people live, learn, work, play, worship, and age significantly affect health, functioning, and quality of life. Healthy People 2030 identifies five key areas: economic stability, education, social and community context, health and health care, and neighborhood and built environment. Moreover, there is a heightened need for integrating state agencies with external partners, in addressing infant and maternal mortality, the opioid crisis and other health issues in NJ.

The selection of NJ's eight State Priority Needs is a product of FHS's continuous needs assessment. Influenced by the MCH Block Grant needs assessment process, the NJDOH budget process, the NJ State Health Improvement Plan, Healthy NJ 2030, Community Health Improvement Plans, and the collaborative process with other MCH partners. FHS has selected the following State Priority Needs:

      SPN # 1- Increasing Equity in Health Births,

      SPN # 2- Reducing Black Maternal and Infant Mortality,

      SPN #3- Improving Nutrition & Physical Activity,

      SPN # 4- Promoting Youth Development Programs,

      SPN # 5- Improving Access to Quality Care for CYSHCN,

      SPN # 6- Reducing Teen Pregnancy,

      SPN # 7- Improving & Integrating Information Systems, and

      SPN # 8- Smoking Prevention.

 

These goals and SPNs are consistent with the findings of the Five-Year Needs Assessment and are built upon the work of prior MCH Block Grant Applications/Annual reports. Consistent with federal guidelines from the MCHB, Title V services within FHS will continue to support enabling services, population-based preventive services, and infrastructure services to meet the health of all NJ families. During a period of economic hardship and federal funding uncertainty, health emergency challenges persist in promoting access to services, reducing racial and ethnic disparities, and improving cultural competency of healthcare providers and culturally appropriate services.

Based on NJ’s eight selected SPNs as identified in the Five-Year Needs Assessment, NJ has selected the following 8 of 15 possible NPMs for programmatic emphasis over the next five-year reporting period:

NPM # 1- Well Woman Care,

NPM # 4- Breastfeeding,

NPM # 5- Safe Sleep,

NPM # 6- Developmental Screening,

NPM # 9- Bullying,

NPM # 11- Medical Home,

NPM # 12- Transitioning to Adulthood,

NPM # 13- Oral Health, and

NPM #14- Household Smoking.

State Performance Measures have been reassessed through the needs assessment process. The existing SPMs which will be continued are:

SPM #1- Black Non-Hispanic Preterm Infants in NJ,

SPM # 2- The percentage of children (≤6 years of age) with elevated blood lead levels (≥10 ug/dL)

SPM #3- Percentage of NJ resident newborns discharged from NJ hospitals who did not pass their newborn hearing screening and have a documented outpatient audiological follow-up visit

SPM # 4- Referral from BDARS to Case Management Unit,

SPM # 5- Age of Initial Autism Diagnosis,

SPM # 6- Teen Outreach Program (TOP®), Reducing the Risk, Teen Prevention Education Program (PEP) and Lifelines completion, and

SPM # 7- Black, Non-Hispanic Infant Mortality in NJ.

The Title V MCH Block Grant Five-Year Needs Assessment Framework Logic Model summarizes the selected eight NPMs and aligns the impact of Evidence-Based Informed Strategy Measures (ESMs) on NPMs and NOMs. The ESMs aim to identify NJ TVP efforts that can contribute to improved performance, relative to the selected NPMs. The Logic Model is organized with one NPM per row. The Logic Model is the key representation that summarizes the Five-Year Needs Assessment process and includes the three-tiered performance measurement system with ESMs, NPMs, and NOMs. The Logic Model represents a more integrated system created by the three-tiered performance measure framework, which ties the ESMs to the NPMs, in turn, influencing the NOMs.

As this final year of the five-year grant cycle comes to a close, the NJ TVS has begun an 18-month needs assessment process to answer three primary questions: 1) How have the most recent five-year grant cycle state priority needs been met vis a vis our Title V initiatives?, 2) What gaps in services occurred, if any, and why?, 3) How are the current needs of NJ residents different from the past grant cycle, and how can we best strategize to address these concerns?  Using the Title V Block Grant performance measurement framework as a guide, and in tandem with feedback from professionals in the field, grantees and service recipients, the needs assessment will offer insight into what services are needed for families in NJ.

Maternal / Women / Reproductive Health & Perinatal / Infant Health

The Healthy Women, Healthy Families Initiative was relaunched this fiscal year with grants awarded on July 1, 2023. This initiative continues to focus on improving maternal and infant health outcomes for women of childbearing age (defined by CDC as 15-44 years of age) and their families, especially Black families, through a collaborative and coordinated community-driven approach. First, we continue to fund the SIDS Center of NJ at Rutgers Robert Wood Johnson Medical School, to provide education and research to reduce sudden unexpected death of infants. In addition, the Healthy Women, Healthy Families program is focusing on the postpartum period through adjoining efforts of community health workers, postpartum doulas and our statewide ConnectingNJ referral hubs.

County-level community health worker case management services focus on providing high-risk families and/or women of childbearing age access to resource information and referrals to local community services that promote child and family wellness. Up until now in state FY24, over 1,700 families have been served by the CHWS who are implementing new municipality-level activities aimed at increasing postpartum care for Black and Hispanic women. These two new programs include postpartum doula services and providing breastfeeding educations sessions and support to non-traditional groups including fathers, teens, and other support persons. Our HWHF community health workers continue to closely partner with our CNJ hubs to ensure a continuum of care for our maternal child health population. NJ TVP has established a CNJ committee and convenes representatives from CNJ, DCF, and NJ TVP to eliminate duplication of effort and services, and improve the overall flow of the standardized screening tools. These tools are used for referrals to programs and services through a centralized web-based system (CNJ Link), where all clients' contacts are documented from referral to enrollment.

The purpose is to: (a) to ensure critical information is collected from all enrolled participants to guide service referrals, education, and case management planning; and (b) to collect data necessary to demonstrate the impact of the program on the well-being of women and families and birth outcomes. The top 5 Service Referrals Categories provided by CNJ from July 2018 to March 2024 included: Family Support (28%), Nutrition (26%), Healthcare (11%), and Concrete Services (11%). For the period, the percentage of clients who mainly benefited from services offered through CNJ were 46%, 24%, 21%, 5%, and 2% for Hispanic, White Non-Hispanic (NH), Black- NH, other, and Asian, respectively.

Also, part of the ConnectingNJ referral network are connections to home visiting throughout NJ. NJ has a robust home visiting program, with NJDOH TVP collaborating with Department of Children and Families to implement the statewide network. The work of the Maternal Infant and Early Childhood Home Visiting (MIECHV) Program, aims to expand NJ’s existing home visiting service system, which provides evidence-based family support services to improve family functioning, prevent child abuse and neglect; and promote child health, safety, development, and school readiness.

The creation of the NJ Doula Learning Collaborative aligns with the First Lady Tammy Murphy’s Nurture NJ initiative to improve birth outcomes and achieve equity in maternal and infant health. The Doula Learning Collaborative (DLC) aims to reduce maternal and infant mortality and eliminate racial disparities in health outcomes by providing training, workforce development, supervision support, mentoring, technical assistance, direct billing, and sustainability planning to community doulas and doula organizations throughout the State of NJ. Thus far, the Doula Learning Collaborative has developed and supported the doula workforce that delivers doula care to NJ’s Medicaid and CHIP members as enrolled NJ FamilyCare providers. Since launching, almost 300 community doulas have been trained, with 85 enrolled as FamilyCare providers who have supported over 750 births.

In response to the NJ stillbirth rate that is higher than the national rate, in February 2023, NJ TVP released a Request for Applications (RFA) that seeks to increase awareness of stillbirth prevention measures and decrease New Jersey’s high stillborn rate. The selected grantees received $100,000 to create and implement a Statewide Evidence-based Stillbirth Awareness Campaign that focuses on awareness and prevention measures to reduce New Jersey’s high stillborn rate by targeting providers and birthing individuals. In conjunction with New Jersey’s Autumn Joy Stillbirth Research and Dignity Act and the selected grantee, NJ TVP is establishing hospital protocols for the care of grieving families. Since launching the Awareness Campaign website, this next year grantees will be hosting regional town halls and possibly adding new language translations, in addition to the five languages represented in stillbirth materials now. The Stillbirth Awareness Campaign aligns with the Nurture NJ Strategic Plan and includes recommendations to reduce NJ’s maternal mortality, eliminate racial disparities in birth outcomes, and make New Jersey the safest and most equitable place in the nation to give birth and raise a baby.

The Postpartum Depression and mood Disorders (PPD-MD) program was initiated in 2006 after legislation was created that mandated all pregnant women be screened for PMD after delivery and by their perinatal provider. Currently, NJ TVP is looking to improve the process by which the calls go through a warmline to provide more efficient care for moms in need of mental health attention after birth.

The FASD/Perinatal Addictions Prevention Project grant program serves to increase education and awareness of the risk for FASD, and the risks associated with other prenatal substance exposure. The grant program’s main activities are to train and educate private and public prenatal care providers throughout NJ to use the 4p’s Plus, or the Pregnancy Risk Assessment, to screen women for substance abuse. The three regional Maternal Child Health Consortia, under the supervision of TVP, are tasked with providing training and awareness to providers, pregnant persons, and their families. Training and education are delivered via presentations, workshops, and seminars. Social media is also utilized as appropriate to provide consumer education and awareness.

The Alma Program Expansion Project established a new Alma program in NJ that provides new and expectant parents with evidence-based knowledge, skills, and support from peer mentors. The Project seeks to improve maternal mental health and substance use and eliminate racial disparities in health outcomes by program delivery support, an expanded focus on substance use, and program advocacy and stability. The program offers a creative solution to offering care using a peer-to-peer approach. An additional step in this project includes an expansion of the mental health workforce to provide tools that can be locally adapted to meet needs and elevate expertise within communities. The establishment of NJDOH’s Colette Lamothe-Galette Community Health Worker Institute (CLG-CHWI) provides training to educate CHWs on 13 core CHW competencies necessary to work effectively with vulnerable populations. Through the CLG-CHWI, CHWs attend 144 hours of relevant classroom instruction over 17 weeks and complete 240 hours of on-the-job training with reflective supervision. The Institute partners with community colleges across the States in Essex, Camden, Mercer, Union, Bergen, Somerset, and Ocean Counties to offer classroom instruction. Through the Rutgers Project ECHO, CHWs were provided with additional training aimed at raising awareness and knowledge on specific health topics, including basics of COVID-19 transmission and prevention, and identifying the impact of COVID-19 in communities where individuals work and live to maintain personal and community safety. Moreover, in late 2023, in collaboration with key stakeholders and CHW instructors who have designed the CHW core curriculum NJ TVP is adding a case management competency to equip CHWs with the skill needed to better case manage their clients.

The NJ TVP is taking a targeted approach to improving pregnancy and birth outcomes in the state by enhancing existing programs and creating new programs with an emphasis on this priority population through the CHW Workforce. TVP recognizes the importance of a statewide collaboration of existing traditional and non-traditional partners to address the social determinants of health, which will be instrumental in improving pregnancy and birth outcomes.

As a result, partners from the Department of Labor and Workforce Development, Division of Community Affairs, Department of Education, Department of Transportation, Department of Children and Families, Department of Human Services, Department of Community Affairs, and the Community are strategically collaborating and using MCH block grant funds to implement culturally responsive public health interventions in NJ.

Child and Adolescent Health Program

In addition to Title V funds, the CAHP currently holds two federal grants to prevent teen pregnancy and promote youth development: (1) the Personal Responsibility Education Program (PREP) and, (2) the Sexual Risk Avoidance Education Project (SRAE). Through PREP, SRAE, and the “Whole School, Whole Community, Whole Child School Health Program” (School Health), CAHP staff operate a statewide youth engagement initiative consisting of 10 Youth Advisory Boards and the NJDOH Voice of Youth Planning Committee. This is managed primarily by the Program Management Officers for School Health, SRAE and PREP with support from the Program Manager.

SRAE is a school, and community-based program focused on building protective factors for youth aged 12-14 to help delay sexual activity and reduce pregnancy and sexually transmitted infections. SRAE uses a Social and Emotional Learning curriculum to provide engagement opportunities, including community service learning, mentoring, and youth leadership. SRAE also utilizes a parent education program employing motivational interviewing techniques to improve parent/teen communication when talking with teens about risks. All SRAE and PREP programming is complete, medically accurate, and Lesbian, Gay, Bisexual, Transgender, Intersex, Asexual, and Questioning (LGBTIAQ)-inclusive and trauma-informed. SRAE and PREP programs served 3,049 middle school and high school aged youth in middle schools in New Jersey in 2023. The evidence-based models implemented through these programs include Wyman’s Teen Outreach Program, Get Real, NJ Teen Prevention Education Program (PEP) and Love Notes. Each program covers the required sexual health content but varies in delivery to provide some flexibility to schools to address scheduling, content, and student needs.

The Leadership Exchange for Adolescent Health Promotion (LEAHP), a national learning collaborative supporting adolescent health, was established by the National Coalition of STD Directors and Child Trends in partnership with the National Association of State Boards of Education. The NJ LEAHP team was formed in January 2020 and will continue through June 2023 due to delays from the COVID-19 pandemic. In 2023, the LEAHP committee added youth mental health to the priority areas. The NJ team is led by Jessica Shields, with colleagues from the NJ Department of Education (DOE), NJDOH Division of HIV, STD, TB services, and the NJ Department of Children and Families.

CAHP completed the fifth year of a HRSA grant for Pediatric Mental Health Care Access (PMHCA) which enhanced the existing DCF-administered Pediatric Psychiatry Care Collaboratives, including accessing care via telehealth technology. In October of 2023, NJDOH applied for and received an additional 3 years of funding for the grant. PMHCA aims to improve access to pediatric mental and behavioral health services, which became essential during the COVID-19 pandemic. Key partners include Hackensack Meridian Health, the American Academy of Pediatrics-NJ Chapter, and Rutgers University. Thanks to these partnerships, over 15,678 consultations and referrals, over 2,354 telehealth referrals and 978 face-to-face encounters have occurred, with the 12–21-year-old population most likely to access these services. As of April 2023, 31 pediatric practices, representing approximately 93 providers, have been equipped with telehealth technology through this HRSA grant.

The CAHP is in year four of a five-year Garrett Lee Smith State/Tribal Youth Suicide Prevention from the Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA). The project period ends on 11/29/25, and the award is for $736,000 per year. Readiness to Stand United Against Youth Suicide: A NJ Public Health Community Initiative Readiness to Stand (NJ R2S Challenge) is a collaborative grant with NJ DCF, the Office of the Secretary of Higher Education, The NJDHS and multiple community-based organizations. In its third year, the New Jersey R2S Challenge has had significant accomplishments, including the launch of the training center on Prevent Suicide NJ https://www.preventsuicidenj.org/online-training/gatekeeper trainings for youth-serving professionals, education and resources for NJ’s County Colleges, the initiation of the third cohort of Lifelines Trilogy in 3 school districts, and 2 youth summits with 263 youth and school professionals in attendance from over 15 school districts across New Jersey.  Plans for the coming year include cohort four of Lifelines Trilogy in 3-5 additional school districts, Attachment-Based Family Therapy training for NJ based behavioral health providers, and the Stanley Brown Safety Plan Training Collaborative Assessment and Management of Suicide Care and the SafeSide® Training for Pediatricians.

Children and Youth with Special Health Care Needs (CYSHCN)

New Jersey's CYSHCN program is known as Special Child Health Services (SCHS). It includes Newborn Screening Follow-up and Genetic Services (NSGS), Early Identification and Monitoring (EIM), Family-Centered Care Services (FCCS), and the newly proposed Data Systems and Emerging Threats Response (DSET) unit.  These units include such programs as the Birth Defects and Autism Registry (BDAR), the Early Hearing Detection and Intervention (EHDI) Program, Specialized Pediatric Services Program (SPSP), and the Ryan White Part D program. These programs work as an integrated continuum of care.

Newborn Screening and Genetic Services

The NSGS Program ensures that all newborns and families impacted by an out-of-range screening result receive timely and appropriate follow-up services. There are currently 61 disorders screened for on the NJ newborn screening panel. Due to the critical nature of many of the disorders for which NJ newborns are screened, follow-up staff act on presumptive positive results identified by the Newborn Biochemical Screening (NBS) Laboratory for these disorders during regular business hours, Saturdays, and certain State holidays to maximize timely referral to the appropriate specialists. To ensure NJ’s program is up to date and effective in terms of screening technologies and operations and responsive to any current concerns regarding newborn screening, the NSGS program staff meet and communicate regularly with several advisory panels composed of parents, physicians, specialists, and other stakeholders. The overarching group is the Newborn Screening Advisory Review Committee and the six established subcommittees (Metabolic and Genetic, Endocrinology, Immunology (SCID), Cystic Fibrosis, Hematology (Sickle Cell Disease), and Neurology.) 

The Newborn Screening Follow-Up staff contact primary care providers and specialty care providers to ensure timely evaluation, confirmatory testing, connection to ongoing treatment and care, as needed, and to obtain a final diagnosis. Results received from the NBS Laboratory range from low risk to presumptive positive. Low-risk follow-ups involve sending letters to parents, making telephone calls to physicians and hospitals, and utilizing multiple resources to locate babies for repeat testing.

In calendar year 2023, over 97,000 babies were screened and close to 10,000 abnormal results were received by the follow-up group. From this work, close to 200 children were confirmed to have a disorder from the NJ newborn screening panel. Children with confirmed diagnoses require continued care and in line with State requirements, these children are registered in the BDAR that includes referral to County level FCCS Case Management services. Additionally, there were approximately 3,500 children identified as likely carriers of a disease. These children are not registered in the BDARS, but their families received a letter making them aware of their potential carrier status with recommendations for follow-up testing.   

Time for follow-up on low-risk results ranges from two to eight weeks until cases are closed. Time-critical presumptive results require expedient actions to ensure that those babies receive prompt medical intervention and treatment. As per protocol, presumptive cases must be reported to physicians and specialists within three hours of receipt of the result from the NBS Laboratory. However, the NSGS team has averaged approximately 30 minutes to report. Time for follow-up on presumptive results ranges from one week to twelve months until cases are closed. These cases can remain open longer if the complexity of a disorder requires multiple office visits/diagnostic tests to confirm a diagnosis.

The NSGS program applied for and received a State Newborn Screening System Priorities Program (Propel) award; funding opportunity HRSA-23-065 (budget period 07/01/2023 – 6/30/2024, with the potential for a total of five years of funding). This funding has allowed the NSGS Program to begin planning for a Long-term Follow-Up (LTFU) component for the Program. In year one, the team has collaborated with and collected information from multiple states that are further ahead on LTFU for newborn screening. The team plans to use REDCap to manage the LTFU surveys and data collection and has a strong draft survey module created with hopes to begin piloting in early June. The plan is to leverage the already existing FCCS Case Management services to conduct and/or facilitate the annual outreach for LTFU.  Many of these children will already be receiving case management services.  For those who are currently receiving services, the case managers can use the opportunity to contact them for outcome data and to potentially re-engage them as needed.

Since 2011, NJ has mandated newborn pulse oximetry screening to detect Critical Congenital Heart Defects (CCHD). Pulse Oximetry results are captured by NJ’s Birth Certificate system and used to identify children at risk for CCHD. Per legislation, any child with a failed pulse oximetry result, is required to be registered in the BDAR. The Newborn Screening and BDAR staff educate hospitals and birth providers about the screening protocol and ensure compliance to screen and report.

In 2023, to better understand the pulse oximetry screening data being collected, the population-level screening results from our Vital Events Registration & Information System (VERI) with newly identified CCHD cases was integrated with the BDAR. We established a robust surveillance system to cross-reference our findings. Ultimately, by working collaboratively and integrating systems, we can now better evaluate the complete CCHD screening process in our birthing facilities, including the adherence to the screening algorithm. The goals were to validate that all failed screenings were registered, that the children received appropriate follow-up, and that any subsequent diagnoses were reported.

In 2023, The VERI system indicated that 105 newborns had failed Pulse Oximetry values.  Our team reviewed these and confirmed that 15 of these were data entry errors.  Thus 90 newborns had confirmed failed values. Of these, 11 were registered with a CCHD and 16 were registered with another cardiac condition.  Forty-six were evaluated and no cardiac condition was diagnosed. Upon review, four newborns met the criteria for “saved” which meant that had they not received the screening, they may have been discharged without evaluation. The screening mandate was enacted to prevent healthy-presenting babies being discharged only to become critically ill later.

The CCHD program continues to collaborate with BDAR staff on Component C of a Cooperative Agreement with the Centers for Disease Control and Prevention’s (CDC) (Advancing Population-Based Surveillance of Birth Defects; CDC-RFA-DD21-2101). Component C focuses on the timing and method of CCHD detection. To improve data quality, BDAR, and pulse oximetry screening staff collaborated to have new fields added to the BDAR pulse oximetry/CCHD module. The new fields went live in mid-January 2023. The new fields help satisfy the requirements of the CDC project and provide an enhanced picture of pulse oximetry screening follow-up in NJ.

Early Hearing Detection and Intervention (EHDI)

The NJ EHDI Program abides by the national public health initiative “1-3-6 Guidelines.” These guidelines seek to ensure that all babies born in New Jersey receive a newborn hearing screening before one month of age, complete diagnostic audiologic evaluation prior to three months of age for infants who do not pass their hearing screening and enroll in early intervention by no later than six months of age for children diagnosed with hearing loss. The EHDI program offers technical support to hospitals on their newborn hearing screening and follow-up programs.

New Jersey hospitals are very successful in ensuring newborns hearing screening, with 99% of babies screened. However, receiving timely and appropriate follow-up remains an area needing improvement, with 87% of children who did not pass initial hearing screening being documented as receiving follow up in 2022.  New Jersey EHDI works with health care providers, local and state agencies that serve children with hearing loss, and families to ensure that infants and toddlers receive timely hearing screening and diagnostic testing, appropriate habilitation services, and enrollment in intervention programs designed to meet the needs of children with newly identified hearing loss.

Specialized Pediatric Services Program (SPSP)

The SPSP aims to provide access to comprehensive, coordinated, culturally competent pediatric specialty and sub-specialty services to families with CYSHCN that are 21 years old or younger (Figure 7). With support from the State and Title V funds, health service grants are distributed to multiple agencies throughout NJ. The SPSP consists of eight Child Evaluation Centers (CECs), of which four CECs house FASD Centers, and three CECs provide newborn hearing screening follow-up. Additionally, there are three Pediatric Tertiary Care (PTC) Centers and five Cleft Lip Cleft Palate-Craniofacial (CLCPC) Centers. All centers provide services statewide across the 21 counties in New Jersey and are partially funded via the health service grants. In SFY23, there were a total of 84,149 patients served across all centers within the Specialized Pediatric Services Program. Of these, 48% (41,094) of children were served at the CECs, 2% (1,350) at the CLCPCs, and 50% (41,705) at the PTCs.  Approximately 58% of the children served are uninsured or are covered via Medicaid/Medicare programs.  In SFY23, $2,205,025 was awarded to CEC grantees, while $770,392 was distributed to CLCPCs and $933,071 to PTCs.

Birth Defects and Autism Registries (BDAR)

Since 1928, New Jersey has been reporting birth defects and has the longest tenure of any state for these reporting requirements. Over the years, our BDAR has become a robust population-based registry for children with birth defects and autism spectrum disorders and provides invaluable surveillance and needs assessment data for service planning and research. All 47 birthing hospitals and hundreds of non-hospital-based practices report to the BDAR through our online registry. Annually, we receive an average of 4,700 birth defect registrations and 3,700 autism registrations. In 2021, the Birth Defects Registry expanded its case ascertainment efforts by abstracting charts of New Jersey children with birth defects who were born at, transferred to, or diagnosed by the Children’s Hospital of Philadelphia (CHOP). 

The BDARS has been redesigned to include a statewide pre-registration search feature to reduce duplication of records, reduction of questions, and easier to use checkoff lists for common comorbidities, symptoms, and behaviors. As NJ has the statutory authority to capture fetal deaths due to birth defects at 15+ weeks of gestation, a new module has been implemented to capture and report these fetal deaths to the CDC. The EIM staff continues to educate providers about the BDAR, how to register, and the rules regarding the Registry. Staff creates reports and resources for both providers and families.

Beginning in 2009, the NJ Autism Registry is the largest mandated autism registry in the country, with more than 52,000 total registrations.  Each year, health care providers submit between 3,000 and 4,000 new registrations.  It is the only registry in the country that includes children up to the age of 22 and refers them to their local county case management services. We serve as a model registry and continue to provide technical assistance to other states considering a registry.

The Autism Registry provides quality prevalence information for the entire state (Figure 7) and can provide information by demographics, including by race and ethnicity. Current national studies such as the Autism and Developmental Disabilities Monitoring (ADDM) Network estimate that the rate of autism in New Jersey is 1 in 34 (based on review of records of a cohort of 8-year-old children in four counties who meet criteria for autism).  The Autism Registry, which calculates its rates based on children in every county who has been diagnosed and registered by a health care provider, has shown similar prevalence rates.  In 2023, Autism Registry staff performed analytics on total autism rates and other metrics for each NJ county as compared to the state overall.  Staff used these data to create a snapshot or profile of registry data for each of the 21 counties in NJ.  Some counties show a higher prevalence rate than the State overall, while some are lower.  Other metrics examined include presence of known perinatal risk factors (low birth weight, multiple birth, and maternal age >35) for children with and without autism in each county compared to children with and without autism in the State overall.  The profiles include the average age at which a child is diagnosed in a county compared to the State and examine the percentage of children who were able to receive a diagnosis in the county where they reside or if they had to travel elsewhere (compared to the State overall).  The profiles were developed to help families learn more about autism in their communities and the resources available to them, and to help county level public and private agencies plan for programs and services for people with autism.     

Not only is there an increase in the prevalence of autism over time, but we see that the race/ethnicity differences are reducing for the most recent birth cohorts. This narrowing of autism rates by race and ethnicity is potentially due to expanded services, more multilingual professionals, and a strong family education program such as the CDC’s Learn the Signs, Act Early program.

Data Systems and Emerging Threat (DSET) Response

An important function of SCHS is to identify and respond to trends in exposures to pregnant persons that have the potential to fuel rising rates of children with special health needs.  Between April 2020 and August 2023, the SCHS work in this area included monitoring outcomes of pregnancies complicated by COVID-19 infection. The program worked collaboratively with partners in Communicable Disease Services and in Population Health to identify over 25,000 infections during pregnancy.  The program scaled up staff with funding from CDC’s Surveillance of Emerging Threats to Pregnant People and Newborns (SET-NET) program used existing program staff and additional temporary staff to review maternal, newborn, and well child visit charts and report de-identified data to CDC.  Over 9,100 delivery hospital records and well child visit records for over 9,200 children were reviewed with data elements of interest abstracted.  The COVID project ended in July 2023 because of declining infection rates.  However, the SET-NET project was expanded in August 2022 to include surveillance of congenital syphilis and congenital cytomegalovirus (cCMV) infections. Syphilis infections during pregnancy and cases of congenital syphilis have been rising significantly in New Jersey and nationally.

By July 2023, the project had identified 314 pregnancies with delivery outcomes in 2018-2021 that were complicated by syphilis infection and maternal/newborn chart abstraction was complete on 85% of those cases. Beginning in July 2023, Staff are tracking the infants with congenital syphilis through age two and abstracting data from their well-child visit charts.  During SFY23, the CMV project completed case ascertainment from several data systems and requested medical records for 132 pregnancies with chart review for those cases starting in FY24. The DSET program is looking at strategies to identify additional exposures appropriate to this model.

Family-Centered Care Services (FCCS)

 FCCS Special Child Health Services Case Management (SCHSCM) oversees and provides approximately four million dollars in funding to 21 county-based CMUs. These funds include federal and state MCH Block grants, Casino-revenue, and Catastrophic Illness in Children Relief funds. CMUs also receive funds from their county governments. These units provide resources to families of children from birth to their 22nd birthday. Annually, over 84% of families opt into case management services with SCHSCM, which totals about 16,800 families. The diversity of NJ is seen in the children and families served by the CMUs. The race/ethnicity of children served in SFY23 is 38.1% Hispanic or Latino, 38.1% White, 14.9% Black/African American, 6.1% Asian/Pacific Islander, and 2.8% Other Races.

FCCS plays a central role in ensuring that all counties provide robust services and collect key information to establish quality and equity across New Jersey. SCHSCM staff also educates all CMUs about relevant federal, state, and community partners. FCCS’s ongoing intergovernmental and interagency collaborations include, but are not limited to, the Social Security Administration, NJ Department of Children and Families, Department of Banking and Insurance , the Boggs Center/Association of University Centers on Disabilities, NJ Council on Developmental Disabilities, and community-based organizations such as Autism NJ, New Jersey Chapter, American Academy of Pediatrics (NJAAP), NJ Hospital Association, and the disability-specific organizations such as the Arc of NJ, SPAN Parent Advocacy Network, and the Statewide Community of Care Consortium (COCC). Consultation and collaboration with NJDOH’s other DOH programs such as NJEIS, Ryan White Part D, MCH, Women, Infants, and Children (WIC), FQHCs, HIV/AIDS, Sexually Transmitted Diseases and Tuberculosis, as well as Public Health Infrastructure Laboratories, and Emergency Preparedness affords FCCS with opportunities to communicate and partner in supporting CYSHCN and their families.

The CMUs remain successful in linking CYSHCN to important services. Below is a summary of a child and her family’s journey navigating her various needs over the past decade.

Reflective Quote: When the child began struggling in public elementary school, the CM helped get the child out of district placement where she’s been receiving a great education for the past 12 years. Mom passed away a few years later so the CM started working with Dad very closely to meet several of her educational needs, respite care, and transition to adulthood needs regarding guardianship. The student is now registered with DDD, has Medicaid, and is receiving services through the personal preference program. She has been accepted at the day program of the family’s choice and will be a June 2024 graduate with all her adulthood services in place.  

One key factor that FCCS focuses on for SCHSCM is the level of engagement with children referred to the Case Management Referral System (CMRS) from the BDARS. Families that SCHSCM are unsuccessful in contacting explain why CMUs have only connected with 71.58% of the children and families released from BDARS. Children with more complex or comprehensive conditions, such as autism, successfully link and remain engaged for a greater amount of time after their initial linkage to SCHSCM. By comparison, children with autism released from BDARS to SCHSCM successfully link 99.95% of the time. Of those children, 22.28% remain engaged for more than 360 days from their initial linkage compared to 10.33% of all children.

 SCHSCM staff focus on continuous quality improvement (CQI) initiatives. One major endeavor is the redesign of the CMRS which will greatly improve the data gathering capability and enhance consistency in documentation within Individual Service Plans (ISPs) across the CMUs. All 21 CMUs use CMRS to track and monitor services. CMRS provides the ability for CMs to create and modify an ISP, track services, referrals, linkages to care, document each contact with the child and the child's family, and register previously unregistered children. Additionally, the ISP provides the State Title V program with the opportunity for desktop audits, the ability to track access to care, and ensures more measurable and readily tracked outcomes.

Additionally, FCCS manages a Fee-for-Service program that assists eligible New Jersey families to purchase hearing aids, orthotics, or prostheses through a State approved vendor system. Family cost participation is calculated using a sliding scale based on family size and income, and the SCHSCM case managers support families in completing the application process. Since Grace’s Law was passed in 2008, requiring NJ insurance companies to cover medically necessary expenses incurred in the purchase of hearing aids for children under the age of fifteen (15), most children served by this program are NJ children who do not have NJ-based health insurance plans or any health insurance coverage at all.

SCHS also refers children ages birth to three to the New Jersey Early Intervention System (NJEIS), which serves the developmental and health-related needs of eligible children. Early intervention services are designed to address a problem or delay in development as early as possible. The system serves approximately 30,000 families annually and provides approximately 40,000 service hours per month. NJEIS provides several services, some of which are: occupational, physical, and speech therapy, as well as developmental intervention. NJEIS is a fee-for-service program and operates with Family Cost Participation charges based on a sliding scale.

Commitment to eliminating health inequities while centering the voices of people with lived experiences.

Throughout the state’s MCH programming, a commitment to eliminating inequities in service provision and elevating the voices of those with lived experience is evidenced by the expansion of programming throughout the state, with a specific focus on families who are not connected to health care, impoverished, and speak languages other than English.  Recognizing the importance of parent/consumer involvement through focus groups in designing and implementing a program to address preterm births and infant mortality issues, the MCH Program incorporated focus groups into several programs under the HWHF initiative, including those for doulas, breastfeeding, and addressing disparities. The HWHF grantees have also established Community Advisory Boards with an emphasis on recruiting new and nontraditional partners. Similarly, the MIECHV also requires funded grantees to implement County Advisory Boards.  Our Alma project hires peer mentors throughout the state who have lived experience as parents with postpartum depression or substance use, and who speak Spanish.  Providing doula support and home nursing support to all NJ birthing people during pregnancy and postpartum demonstrates the commitment we have to individuals in the perinatal period, and to reaching those with greater needs.  Additionally, the state continues to cultivate a strong connection to local agencies like the SPAN Parent Advocacy Network, a program that helps to elevate parent and family voices.  Our preterm birth prevention program is working to ensure that birthing people with high perinatal morbidity events are receiving services rooted in best practice methodologies.  Moreover, the state has invested additional funds into workforce development, prioritizing of hiring people from the community with characteristic parity to the recipients.