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 FHS is to improve the health, safety, and well-being of families and communities in NJ. The Division promotes and protects the health of mothers, children, adolescents, and at-risk populations and reduces disparities in health outcomes by ensuring access to quality comprehensive care. The Division’s ultimate goals are to enhance the quality of life for each person, family, and community and to invest in future generations’ health.

In 2021, NJ's population density (persons per square mile) was 1,260 to 1 compared with 93 to 7 nationally. There are 564 municipalities and 21 counties in NJ. The most populated counties in NJ are in the northern part of the state; these are Bergen and Essex counties, each with a population of 955,732 and 863,728, respectively. While Bergen is one of the most populated counties, it is also one of the top 5 most densely populated counties (Figure 1).

 

Figure 1. 2021 Population Density: New Jersey Counties

 

According to the 2022 NJ Population Estimates of race, 53.5% of the population were white, non-Hispanic; 15.3% were Black; 10.3% were Asian; 0.1% were American Indian and Alaska Native; and 2.4% reported two or more races. In terms of ethnicity, 20.9% of the population was Hispanic. The 2020 American Community Survey (ACS) identified that 31.6% of New Jersey residents speak a language other than English in the home compared to 21.5% nationally.

The racial and ethnic mix for NJ mothers, infants, and children is more diverse than the overall population composition. According to 2021 birth certificate preliminary data, 27.9% of mothers delivering infants in NJ were Hispanic, 47.3 % were white non-Hispanic, 12.6% were Black non-Hispanic, and 9.9 % 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 1) improving access to health services thru partnerships and collaboration, 2) reducing disparities in health outcomes across the lifespan, and 3) increasing cultural competency of services as three priority goals for the MCH population. These goals are consistent with the Life Course Perspective (LCP), which proposes that an interrelated web of social, economic, environmental, and physiological factors contribute, to varying degrees through the course of a person’s life and across generations, to good health and well-being. Social Determinants of Health (SDOH), 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 of SDOH: economic stability, education, social and community context, health and health care, and neighborhood and built environment. In consideration of SDOH, there is a heightened need for integrating both health and non-health partners, as well as state, and external partners, in addressing infant, and maternal mortality, the opioid crisis, and other public health issues facing 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 State Priority Needs (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 eight of 15 possible National Performance Measures (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 (SPMs) 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) [Deactivated],

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

SPM # 5- Age of Initial Autism Diagnosis, and

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

SPM # 7- Black, NH Infant Mortality in NJ.

 

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 National Outcome Measures (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, which in turn influences the NOMs. Considering the high rate of adverse birth and pregnancy outcomes in NJ, NJ TVP has been collaborating with community-based organizations to strategically address these adverse birth outcomes on persisting racial and ethnic disparities as they relate to pregnancy and birth outcomes.

Maternal/Women /Reproductive Health & Perinatal/Infant Health

1.  HWHF grants have been awarded in state fiscal year 2019 (start date of July 1, 2018) through a request for proposals process and will be re-bided for state fiscal year 2024. This initiative aims to improve 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. This is being done using a two-pronged approach:
   1. County-level activities 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
   2. BIM municipality-level activities focus on Black NH women of childbearing age by facilitating community linkages and supports, implementing specific BIM programs, and providing education and outreach to health providers, social service providers, and other community-level stakeholders. BIM activities include breastfeeding support groups, fatherhood support groups, Centering pregnancy (group prenatal care), Centering parenting (group pediatric care), and Doulas. From July 2018 to February 22, 2023, the percentage of clients who mainly benefited from services offered through HWHF was 43.9%, 35.0%, 15.4%, 2.0%, and 3.4% for Hispanic, NH Black, NH White, and Asian, respectively.
   3. In June 2023, the HWHF grant cycle will end. Based on a comprehensive list of recommendations that were made by the NJ TVP evaluation team that evaluated the program, the RPHS Team within TVP is revising the RFP to better address the need of the MCH population that the HWHF focuses on (Black, NH, and Hispanic). Informed by current birth, infant mortality rates, and population density at each NJ county, the team created 4 statewide regions that will implement key maternal and child health programs (e.g., breastfeeding education to non-traditional audiences and doula postpartum support) starting in FY24 for 5 years until the expiration of the new grant cycle (Figure 2).
2.  Connecting NJ (formerly called Central Intake) hubs have been established; these are single points of entry for screening and referral of women of reproductive age and their families to home visiting programs and necessary medical and social services. The CHW model continues to perform outreach and client recruitment within the targeted community to identify and enroll women and their families in appropriate programs and services and provide case management. NJ TVP has established a CNJ committee and convenes representatives from the CNJ, DCF, and NJ TVP to eliminate duplication of effort and services, ensure alignment with emerging needs, 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 (SPECT – Single Point of Entry and Client Tracking), where all clients' contacts are documented from referral to enrollment.
   1. 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. Additionally, information about the services specifically targeted to women in cities with high rates of Black Infant Mortality (BIM) is also collected in a data system called NJCHART. BIM activities include participation in centering groups, doula services, services for fathers, and breastfeeding support services. The top 5 Service Referrals Categories provided by CNJ from July 2018 to March 2022 included: Family Support (28.68%), Nutrition (25.11%), Healthcare (12.26%), and Public Benefits (9.52%). For the period, the percentage of clients who mainly benefited from services offered through CNJ were 45%, 25%, 22%, 5%, and 2% for Hispanic, White- NH, Black- NH, other, and Asian, respectively.
3. The creation of the NJ Doula Learning Collaborative (DLC) aligns with the First Lady Tammy Murphy’s Nurture NJ initiative to improve birth outcomes and achieve equity in maternal and infant health. The 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 DLC has developed and supported the doula workforce that delivers doula care to NJ’s Medicaid and CHIP members as enrolled NJ FamilyCare providers.
4. In response to the NJ stillbirth rate that is higher than the national rate, in February 2023, NJ TVP released a Request for Application (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 State-wide 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 will establish hospital protocols for the care of grieving families. 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.
5. The Postpartum Depression and Mood Disorder (PPMD) grant was awarded in 2006 through a law that was passed to screen women after birth. The program has since continued to provide postpartum care for women. The focus of the program is to provide postpartum screening in women across NJ to decrease postpartum depression in women after birth. This is being achieved through a streamlined process so that moms can connect with providers within their counties to receive the care they need. 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.
6. The Fetal Alcohol Spectrum Disorder (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 PRA, 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. To ensure the program’s effectiveness, NJ TVP is looking to improve the process of offering training and educational materials being disseminated.

 

 

 

 

Figure 2. Healthy Women Healthy Families Regions for Fiscal Year 24

 

 

7. The Alma Program Expansion Project aims to establish a new Alma program in NJ that will provide new and expectant parents with evidence-based knowledge, skills, and support from peer mentors. The Project seeks to improve maternal mental health and substance misuse and eliminate racial disparities in health outcomes by providing workforce development (training and supervision), program delivery support, expanded focus on substance use as a program target, and technical assistance. The program offers a creative solution to offer care that many communities want and expand the mental health workforce by providing tools that can be locally adapted to meet needs and elevate expertise within communities.
8. Another program promoting the Life Course Perspective is the Maternal Infant and Early Childhood Home Visiting (MIECHV) Program, which expanded home visiting across all 21 NJ counties. The NJ 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. Full implementation of the NJ MIECHV Program is being carried out in collaboration with the Department of Children and Families (DCF). It promotes a system of care for early childhood.
9. The establishment of NJDOH’s Colette Lamothe-Galette – Community Health Worker Institute (CLG-CHWI) provides training to educate CHWs on 12 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 1000 to 2000 hours of on-the-job training with reflective supervision. CLG-CHWI partners with community colleges across the States in Essex, Camden, Mercer, and Ocean Counties to offer classroom instruction. Through the Rutgers Project ECHO, CHWs will be 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. Figure 3 displays an overview of the CHW workforce and the expected outcomes.

 

 

 

 

 

Figure 3. Overview of NJ Community Health Worker Workforce and Expected Outcomes

 

 

 

Therefore, 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 (SDOH), which will be instrumental in moving the needle on pregnancy and birth outcomes.

 

Figure 4. Stakeholder Map

 

 

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 (Figure 4).

 

 

Child and Adolescent Health Program

 

In addition to Title V funds, the Child and Adolescent Health Program (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 (SRAE) Project. Through PREP, SRAE, and the Whole School, Whole Community, Whole Child School Health Program, CAHP funds a State Adolescent Health Coordinator to direct statewide youth engagement consisting of 10 Youth Advisory Boards and the NJDOH Voice of Youth Planning Committee.

 

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 (STIs). SRAE uses a Social and Emotional Learning (SEL) 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. SRAE is a developmentally appropriate public health approach to sexual health education complementary to the PREP program, which provides extensive education on Sexual Risk Reduction and avoidance. PREP is a school- and community-based comprehensive sexual health education program that replicates evidence-based, medically accurate programs proven effective in reducing initial and repeat pregnancies among teens aged 14-19. NJ PREP also seeks to help teens avoid and reduce high-risk sexual behaviors through the promotion of delay, abstinence, refusal skills, use of condoms and other forms of birth control, and reducing the number of sexual partners. NJ PREP provides education on the following adult preparation topics: Healthy Relationships, Life Skills, and Adolescent Development. All SRAE and PREP programming is complete, medically accurate, and Lesbian, Gay, Bisexual, Transgender, Intersex, Asexual, and Questioning (LGBTIAQ)-inclusive and trauma-informed.

 

The Leadership Exchange for Adolescent Health Promotion (LEAHP), a national learning collaborative supporting adolescent health, was established by the National Coalition of STD Directors (NCSD) and Child Trends in partnership with the National Association of State Boards of Education (NASBE). The NJ LEAHP team was formed in January 2020 and will continue through June 2023 due to delays from the COVID-19 pandemic. NJ TVP has established a multi-sector, state-level leadership team to develop state-specific action plans in support of policy assessment, development, implementation, monitoring, and evaluation to address adolescent health in three priority areas: sexual health education (SHE), sexual health services (SHS), and safe and supportive environments (SSE). In May of 2022, LEAHP, in coordination with the PREP program, is launching an STI working group which, through LEAHP, will develop action steps to address both SHE and SHS regarding recent increases in STI rates amongst adolescents. The NJ team is led by Jessica Shields (NJ TVP), with colleagues from the NJ Department of Education (DOE), NJDOH Division of HIV, STD, TB services, DCF, and the NJ State Board of Education.

 

The CAHP is in the 5th and final year of a Health Resources Service Administration (HRSA) grant for Pediatric Mental Health Care Access (PMHCA) which enhances the existing Department of Children and Families (DCF) administered Pediatric Psychiatry Care Collaboratives, with telehealth technology. 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 Behavioral Health Care. To date, over 15,032 youth less than 21 years of age have been screened, and 23,178 mental health consultations/ referrals were completed. As of April 2022, 27 pediatric practices, representing approximately 86 providers, have been equipped with telehealth technology through this HRSA grant.

 

The CAHP is in year three of a five-year Garrett Lee Smith State/Tribal Youth Suicide Prevention from the Department of Health and Human Services (DHHS) 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 (OSHE), and multiple community-based organizations. In its second year, the New Jersey R2S Challenge has had significant accomplishments, including the launch of Prevent Suicide NJ, gatekeeper trainings for youth-serving professionals, education and resources for NJ’s County Colleges, the second cohort of Lifelines Trilogy in 5 school districts, and the 2022 Adolescent Health Symposium: Challenges Today Solutions for Tomorrow with over 600 professionals (pediatricians, nurse practitioners, social workers, guidance counselors, school nurses, and other youth-serving professionals) in attendance. Plans for the coming year include the launch of the training center on the Prevent Suicide NJ Learning Portal, Cohort three of Lifelines Trilogy in 3-5 additional school districts, Attachment-Based Family Therapy (ABFT) training for DCF Intensive in Community Providers within the Children’s System of Care; the Stanley Brown Safety Plan Training Collaborative Assessment and Management of Suicide Care (CAMS-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 four programs coordinated: Newborn Screening Follow-up and Genetic Services (NSGS), Early Identification and Monitoring (EIM), Data Systems and Emerging Threat Response (DSET), and Family-Centered Care Services (FCCS). Located within these programs are 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 (RWPD) program.

These programs work as an integrated continuum of care. The diagrams below highlight some of our 2022 successes (Figure 5).

 

 

 

 

 

 

 

Figure 5. 2023 Special Child Health Services

 

Newborn Screening and Genetic Services

The NSGS Program ensures that all newborns and families affected by an out-of-range screening result receive timely and appropriate follow-up services. On December 5, 2022, X-linked adrenoleukodystrophy (X-ALD) was added to the NJ newborn screening panel bringing the total number of biochemical/bloodspot screenings to 61 disorders. 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 is responsive to any current concerns regarding newborn screening, the NSGS program staff meets and communicates regularly with several advisory panels composed of parents, physicians, specialists, and other stakeholders. The overarching group is the Newborn Screening Advisory Review Committee (NSARC) and the five established subcommittees of NSARC. The sale of newborn biochemical bloodspot filter cards funds the NSGS program.

The Newborn Screening Follow-Up staff contacts primary care providers, specialty care providers, and parents to ensure timely evaluation and confirmatory testing 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. Time for follow-up on low-risk results ranges from two to eight weeks until cases are closed. In 2022, over 99,000 babies were screened, and 8,567 results were sent for follow-up. Approximately 2,114 of those results were presumptive positive; 1,031 were time-critical presumptive results, and the other 1,083 were non-time-critical results (Figure 6). 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 accurately. The NSGS team confirmed diagnoses for 219 babies (Figure 6).

 

Figure 6. 2022 Flow Chart of Newborn Screening Follow-up Results

 

 

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. NJ is the first state in the nation to integrate the CCHD screening with their Birth Defects Registry. The Newborn Screening and BDAR staff educate hospitals about the screening protocol, ensure compliance with the mandate, and report confirmed diagnoses. All infants with failed screens are reported to the BDAR, and staff follow up to ensure that the congenital cardiac conditions are also reported. Since pulse oximetry screening was mandated, 45 babies were identified as “saves,” with one identified in 2022. Saves are defined as babies not diagnosed with or suspected to have a CCHD before the pulse oximetry screening.

In May 2021, the CCHD program began collaborating more closely with the BDAR to meet the goals and objectives laid out in 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. This project continues and fits well with our already established quality assurance activity of matching BDAR data to the pulse oximetry screening results in the birth certificate file to ensure that all babies who failed the screening are registered. As part of this project and to improve data quality, BDAR, and pulse oximetry screening staff collaborated to have new fields added to the BDAR pulse oximetry/CCHD module. BDAR user trainings were held, and the new fields went live in mid-January 2023.

 

 

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; however, receiving timely and appropriate follow-up remains an area needing improvement. 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 Fetal Alcohol Syndrome/Fetal Alcohol Spectrum Disorder (FAS/FASD) Centers, and three CECs provide Newborn Hearing Screening (NBHS) 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. In SFY22, there were a total of 117,551 patients served across all centers within the Specialized Pediatric Services Program. Of these, 61% (71,182) of children were served at the CECs, 1% (1,389) at the CLCPCs, and 38% (44,341) at the PTCs. Approximately 58% of the children served are uninsured or are covered via Medicaid/Medicare programs.

 

 

 

 

 

 

 

 

 

 

 

 

Figure 7. Location of Funded Specialized Pediatric Centers

 

Birth Defects and Autism Registries (BDAR)

Dating back to 1928, New Jersey is proud to have the oldest requirement in the nation for reporting birth defects. Over the years, our BDAR has become a robust population-based registry for children with birth defects and Autism Spectrum Disorder (ASD) 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 3,600 autism registrations. In 2021, we began our efforts to allow non-New Jersey hospitals to register New Jersey-resident babies. The Birth Defects and Autism Reporting System (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. These continuous efforts and changes will improve our data's accuracy and overall surveillance efforts.

Beginning in 2009, the Autism Registry is the largest mandated autism registry in the country. We are 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 8) and information about racial and ethnic disparities. It examines known perinatal risk factors and how they influence the New Jersey prevalence rates (Figure 8).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Figure 8. Prevalence of Autism Across New Jersey

 

 

The Autism Registry data has also provided useful information about the prevalence of autism across time and across different populations. The Registry rates compare to the CDC’s rates and can provide rates across all counties and additional information about perinatal risk factors and comorbidities. As seen in the figure below, 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.

 

Figure 9. Autism Spectrum Disorder (ASD) Prevalence Over Time

 

 

Data Systems and Emerging Threat (DSET) Response

One of our most important functions is to participate in public health surveillance efforts. Special Child Health Services recently began collecting data on COVID-19-positive pregnant persons and their infants. For 2020 infection dates and a sample of 2021 infection dates, staff abstract maternal and newborn hospital charts and well-child visit charts for infants up to 6 months. Title V funding supplements project funding in addition to CDC funding received under the Enhancing Laboratory Capacity grant. As of October 2022, there were almost 25,906 COVID positive pregnant persons; however, this equates to approximately 1% of the total positive COVID cases and between 6 and 10% of the birthing population, depending on the county (Figure 10). To date, we have completed the medical abstractions of 71% of 2020 maternal cases, 71% of 2020 infant cases,13% of 2021 maternal cases, and 30% of 2021 infant cases.

 

 

Family-Centered Care Services (FCCS)

FCCS 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 (CICRF). CMUs also receive funds from their county governments. These units provide resources and referrals to families of children from birth up to their 22nd birthday. Annually, over 16,300 families receive services from SCHS- CM. The diversity of NJ is seen in the children and families served by the CMUs. The race/ethnicity breakdown for children served in SFY22 is 33.18% Hispanic or Latino, 37.05% White, 13.89% Black or African American, 6.7% Asian, and 9.63% 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. FCCS staff also educates all CMUs about important 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 (DOBI), 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,

Statewide Parent Advocacy Network (SPAN) and the Statewide Community of Care Consortium

(COCC). Consultation and collaboration with NJDOH’s other DOH programs such as EIS, RWPD, MCH, Women, Infants, and Children (WIC), Federally Qualified Health Centers (FQHCs), HIV/AIDS, Sexually Transmitted Diseases (STD) 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.

Through FCCS, CMUs remain successful in linking children to important services. Below is an excerpt from an email showcasing the role of CMUs working with Title V-CYSHCNs.

Reflective Quote:

“You may remember that I'm a parent of two boys who have complex medical needs and that my older son passed away a few years ago. At that time, many supports weren't accessible to us, but during the struggle to find appropriate services for him, Special Child Health Services was my one saving grace. My case manager at SCHS understood our needs better than anyone, and all the helpful supports he ever received came from her suggestions and/or direct help.”

One key factor that FCCS focuses on for SCHSCM is the level of engagement with children referred to CMRS from the BDARS. The figure below illustrates the level of family engagement within SCHSCM. The special needs population at large has a diverse level of need. For example, comparing a child born with hypospadias, which can be surgically corrected and require no further assistance from a CMU to a child with a diagnosis of autism spectrum disorder, which may have a greater and prolonged level of need, results in a greater level of engagement. Examples such as this and families we are unsuccessful in contacting explain why CMUs only successfully link with 71.58% of all children and families released to them from BDARS. However, 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 an Autism diagnosis released from BDARS to SCHSCM successfully link 99.95% of the time. Of those children with Autism, 22.28% remain engaged for more than 360 days from their initial linkage compared to 10.33% of all children (Figure 10).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Figure 10. Level of Engagement for Children Linked to Special Child Health Services Case Management After Release From BDARS

 

 

FCCS staff focus on continuous quality improvement (CQI) initiatives. One major endeavor is the redesign of the Case Management Referral System (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, and linkages to care, document each contact with the child and the child's family, and register previously unregistered children. It 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 runs 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 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 from birth to three to NJEIS, which serves the developmental and health-related needs of children. NJEIS provides quality services in a child’s natural environment by enhancing the capacity of families to support their child using a parent model and creating a partnership between practitioners and families. Early intervention aims to promote the child and family’s ability to meet developmental outcomes chosen by the family and outlined in the Individualized Family Service Plan (IFSP). 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 (FCP) based on a sliding scale.