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 works to promote and protect the health of mothers, children, adolescents, and at-risk populations, and to reduce 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 make an investment in the health of future generations.

Figure 1. 2021 Population Density: New Jersey Counties

 

 

In 2021, the population density  (persons per square mile) in NJ  is 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 located 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).

According to the 2021 NJ Population Estimates of race, 54.6% of the population were white, non-Hispanic; 15.1% were black, non-Hispanic; 10% were Asian; 0.6% were American Indian and Alaska Native, and 2.3% 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. Among this group, 43.2% who speak Spanish in the home also speak English less than very well. 32.1% of those who primarily speak Indo-European languages and 36.5% of those who primarily speak Asian and Pacific Island languages speak English less than very well.

The racial and ethnic mix for NJ mothers, infants, and children is more diverse than the overall population composition[1]. According to 2021 birth certificate preliminary data, 27.95% 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[2]. 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 life span, 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 inter-related 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 the environments in which people live, learn, work, play, worship, and age, have a significant effect on health, functioning, and quality of life. Healthy People 2030 identifies five key areas of SDOH as 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, maternal mortality, the opioid crisis, and other public health issues facing NJ.

The selection of the 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 Healthy 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 magnified by the COVID-19 public health emergency, challenges persist in promoting access to services, reducing racial and ethnic disparities, and improving cultural competency of health care 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) [Deactivited].

SPM #3 Hearing Screening Follow-up,

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.

SPM #7 Black Infant Mortality in NJ

 

Title V MCH Block Grant Five-Year Needs Assessment Framework Logic Model (See Supporting Document #1) summarizes the selected eight NPMs and aligns the impact of Evidence-Based Informed Strategy Measures (ESMs) on NPMs and National Outcome Measures (NOMs). The purpose of the ESMs is 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 Evidence-Based or Informed Strategy Measures (ESMs), National Performance Measures (NPMs), and National Outcome Measures (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 fiscal year 2019 (start date of July 1, 2018) through a request for proposals process. The goal of this initiative is 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 and
   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 March 2022, the percentage of clients who mainly benefited from services offered through HWHF were 42.9%, 36.4%,14.9%, 3.3%, and 2.1% for Hispanic, Black, NH, White, NH, other, and Asian, respectively. Figure 2 displays the target regions and the services offered by county. Additionally, the HWHF Fatherhood initiative was a success with a total of 207 fathers graduating from the program since its inception three years ago with alumni still staying involved.

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 necessary home visiting programs and necessary medical and social services . The CHW model performs outreach and client recruitment within the targeted community to identify and enroll women and their families in appropriate programs and services and provides case management for up to 3 years. CNJ hubs work closely with community providers and partners, including CHWs, to eliminate duplication of effort and services. Standardized screening tools are used and referrals to programs and services are tracked in a centralized web-based system (SPECT – Single Point of Entry and Client Tracking), documenting all client contacts 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. Additionally, information about the services specifically targeted to women in cities with high rates of 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 (22.97%), Healthcare (13.45%), and Public Benefits (9.55%). For the aforementioned period, the percentage of clients who mainly benefited from services offered through CNJ were 43.86%, 25.82%, and 22.56%, 5.36%, 2.38% for Hispanic, White, NH, Black, NH, other and Asian, respectively.
3. The creation of the NJ Doula Learning Collaborative (DLC) is in alignment with the Nurture NJ initiative to improve birth outcomes and achieve equity in maternal and infant health[3]. The goal of the DLC is 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.  A focus for the DLC will be to develop and support the doula workforce that delivers doula care to NJ’s Medicaid and CHIP members as enrolled NJ FamilyCare providers.
4. 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, NJDOH 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.  
5. 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 activity is to train and educate private and public prenatal care providers throughout the state of NJ to use the 4p’s Plus or the PRA, to screen women for substance abuse. The three regional Maternal Child Health Consortia are tasked with providing training and awareness to providers, and pregnant persons, as well as 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. 
6. Another program promoting the Life Course Perspective is the Maternal Infant and Early Childhood Home Visiting (MIECHV) Program which has expanded home visiting across all 21 NJ counties with over 6,500 families served annually over the prior five-year period. The goal of the NJ MIECHV Program is to expand NJ’s existing system of home visiting services 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) and is promoting a system of care for early childhood.
7. 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.  Moreover, CLG-CHWI partners with community colleges 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.

 

  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 through the enhancement of existing programs and creating new programs with an emphasis on this priority population through the CHW Workforce (Figure 3). TVS recognizes the importance of a statewide collaboration of existing traditional and non-traditional partners to address the 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 complimentary to the PREP program which provides extensive education on Sexual Risk Reduction in addition to 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 formed in January 2020 and will continue through June of 2023 due to delays from the COVID-19 pandemic. NJ TVP has a multi-sector, state-level leadership team with the goal 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, (NJDOH), with colleagues from the NJ Department of Education (DOE), NJDOH Division of HIV, STD and TB services, DCF, and the NJ State Board of Education. 

 

The CAHP is in the 4th year of a five-year HRSA grant PMH enhances the existing DCF administered statewide network of nine regional Pediatric Psychiatry Care Collaboratives, with telehealth technology. Pediatric Mental Health (PMH) 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 182,662 youth less than 21 years of age have been screened and 17,651mental health consultations/ referrals were completed.  As of April 2022, 54 pediatric practices, representing approximately 112 providers, have been equipped with telehealth technology through this HRSA grant. 

The CAHP is in year two of a five-year Garrett Lee Smith State/Tribal Youth Suicide Prevention from the DHHS Substance Abuse and Mental Health Services Administration (SAMHSA). The project period ends 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 (NJ R2S Challenge) is a collaborative grant with NJ DCF, the Office of the Secretary of Higher Education, and multiple community-based organizations. In its first year, Readiness to Stand United Against Youth Suicide: A New Jersey Public Health Community Initiative (New Jersey R2S Challenge) has accomplished much including the development of a Prevent Suicide NJ Learning Portal, gatekeeper training for youth-serving professionals, education and resources for NJ’s County Colleges, the first cohort of Lifelines Trilogy training in 3 survivor school districts, and a kickoff event with over 1,300 professionals (pediatricians, nurse practitioners, social workers, guidance counselors, school nurses and other youth-serving professionals) in attendance. In May of 2022, GLS will support its second large professional education conference: Adolescent Health Symposium 2022: Challenges Today Solutions for Tomorrow, featuring a multitude of topics that will assist youth-serving professionals in their care of adolescents. Plans for the coming year include the launch of Prevent Suicide NJ Learning Portal in July of 2022, along with the launch of 988; a statewide youth led suicide prevention and awareness campaign, Cohort two of Lifelines Trilogy in 3-5 additional school districts; clinical training for all NJ County College Counselors; Attachment-Based Family Therapy (ABFT) training for DCF Intensive In Community Providers within the Children’s System of Care; and multiple other educational and clinical training for youth-serving professionals including (Understanding and detecting suicide, screening and assessment of suicide, Adolescent Clinical Treatment of Suicide, ABFT, Dialectical Behavioral Therapy (DBT), Collaborative Assessment and Management of Suicide Care (CAMS-Care) and more.   

Children and Youth with Special Health Care Needs (CYSHCN)

New Jersey's CYSHCN program is known as Special Child Health Services (SCHS) and includes three programs coordinated (Figure 5): Newborn Screening Follow-up and Genetic Services (NSGS), Early Identification and Monitoring (EIM), 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 three programs work as an integrated continuum of care. The diagram below highlights some of our 2021 successes.

 

 

 

 

 

Figure 5. 2021 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 January 31, 2022, SMA was added to the NJ newborn screening panel bringing the total number of biochemical/bloodspot screenings to 60 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 state-of-the-art in terms of screening technologies, 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 NSGS program is funded by the sale of newborn biochemical bloodspot filter cards. 

The Newborn Screening Follow-Up staff contact primary care providers, specialty care providers, and parents to ensure timely evaluation, confirmatory testing, and to obtain a final diagnosis.  Results received from the NBS Laboratory range from low risk to presumptive. Low risk follow-ups involve sending letters to parents, making telephone calls to physicians and hospitals, and utilizing multiple resources to locate babies for further testing. Time for follow-up on low-risk results ranges from two to eight weeks until cases are closed. In 2021, over 98,000 babies were screened, and 8,085 results were sent to follow-up.  Approximately 1,884 results required aggressive actions to ensure that those babies received prompt medical intervention and treatment (Figure 6). As per protocol, presumptive cases must be reported to physicians and specialists within three hours from receipt of 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 the disorders require multiple office visits/diagnostic tests to accurately confirm diagnoses. The NSGS team confirmed diagnoses for 259 babies. 

 

 

 

 

 

 

 

 

Figure 6. 2021 Flow Chart of Newborn Screening Follow-up Results

 

Since 2011, New Jersey has mandated newborn pulse oximetry screening to detect Critical Congenital Heart Defects (CCHD).  Pulse Oximetry results are captured by New Jersey’s Birth Certificate system and used to identify children at risk for CCHD. New Jersey 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 reporting 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 44 babies were identified as “saves” with three identified in 2021. Saves are defined as babies who were not indicate with a CCHD prior to 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 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.

Early Hearing Detection and Intervention  

The New Jersey 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 the age of one-month, 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 

The goal of the SPSP is 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. With support from the State and Title V funds, health service grants are distributed to multiple agencies throughout NJ (Figure 7). 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 SFY21, there were a total of 121,260 patients served across all centers within the Specialized Pediatric Services Program, of these 57% (69,150) of children were served at the CECs, 1% (1,131) at the CLCPCs, and 42% (50,979) 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

 

 

 

Early Identification and Monitoring 

 Dating back to 1928, New Jersey is proud to have the oldest requirement in the nation for the reporting of birth defects. Over the years, our BDAR has become a robust population-based registry for children with birth defects and Autism Spectrum Disorders (ASD) and provides invaluable surveillance and needs assessment data for service planning and research.  All 49 birthing hospitals and hundreds of non-hospital-based practices report to the BDAR through our online registry.  Annually, we receive an average of 4,600 BDR and 3,200 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 search to reduce duplication, reduction of questions, and more 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 the accuracy of our data and improve our overall surveillance efforts.  

 One of our most important functions is to participate in public health surveillance efforts.  In 2020, EIM staff began to collect data on COVID-19 positive pregnant persons and their infants.  Starting with 2020 births, we have abstracted maternal charts and worked with NJ Chapter of the American Academy of Pediatricians (NJAAP) to collect infant outcome data.  These data are provided to the CDC and currently comprise 25% of the maternal data that is used in the CDC reporting. New Jersey was able to capitalize on its prior ZIKA experience, collaboration with Communicable Disease Services and Population Health, our relationships with hospitals, and our strong clinical and data staff to accomplish this project.  Leveraging MCH funding to cover staff time and effort, EIM successfully monitored and reported monthly COVID-19 maternal and infant outcomes until CDC funding was allocated. As of July 2022, there were almost 20,680 COVID pregnant women; however, this equates to approximately 1% of the total positive COVID cases and between 5 and 10% of the birthing population depending on the county. To date, we have completed the medical abstractions of 41% of 2020 maternal cases and 63% of 2020 infant cases. We are continuing our efforts by abstracting maternal and infant charts for a sample of 2021 births, and the 2021 COVID case abstractions are scheduled to begin in mid-to late-Summer 2022.    

 

  Figure 8. COVID-19 Cases per 1,000 Expected Pregnancies

 

 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 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, information about racial and ethnic disparities, and examines known perinatal risk factors and how they influence the New Jersey prevalence rates (Figure 9).                                                                                                        

  Figure 9. 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 (Figure 10). The Registry rates compare to the CDC’s rates when only diagnosed children are included and can provide rates across all counties and additional information about perinatal risk factors, comorbidities, and Early Intervention participation.    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 10. Autism Spectrum Disorder (ASD) Prevalence Over Time

 

 

 

 
Family-Centered Care Services (FCSS)

FCSS oversees and provides approximately 3.4 million dollars in funding to 21 county-based CMUs.  These funds include federal and state MCH Block grants, Casino-revenue, and Catastrophic Illness Child 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 15,000 families receive services with the majority. The diversity of NJ is seen in the children and families that the CMUs serve.  In figure 11, the pie chart on the left side shows the way Race/Ethnicity data are usually presented to allow for data comparisons across states and the nation, the pie chart on the right side and the surrounding word cloud shows the ways that individuals reported their own identity. This chart demonstrates the true diversity of New Jersey’s CYSHCN population and the range of cultures and languages that our CMUs are serving.   

 

 

 

 

 

 

 

 

 

Figure 11. Special Services Race and Ethnic Representation

 
   

 

FCCS plays a central role in ensuring that all counties provide a robust set of services and collects key information to establish quality and equity across New Jersey.  We also educate all CMUs about important federal, state, and community partners.  FCCS’s ongoing intergovernmental and interagency collaborations include, but are not limited to, Social Security Administration, NJ DCF, DOBI, the Boggs Center/Association of University Centers on Disabilities, NJ Council on Developmental Disabilities, and community-based organizations such as Autism NJ, 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 DIH 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 we received that showcases the role of CMUs working with Title V-CYSHCNs. 

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. 

To enhance consistency in documentation within individual service plans across the CMUs, 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.  All 21 CMUs use CMRS to track and monitor services. CMRS provides the ability for CMs to create and modify an Individual Service Plan (ISP), track services, referrals, linkages to care, document each contact with the child and child's family, and register previously unregistered children.  It provides the State Title V program with the opportunity for desktop review and provides the ability to track access to care and ensures more measurable and readily tracked outcomes.

SCHS also refers children from birth to three to NJ EIS.  EIS serves the developmental and health-related needs of children by providing quality services in a child’s natural environment by enhancing the capacity of families to support their child using a coaching model and creating a partnership between practitioners and families. The system serves approximately 30,000 families annually, and provides approximately 40,000 service hours per month, EIS provides occupational, physical, and speech therapy as well as developmental intervention.  NJEIS is fee-for-service and operates with Family Cost Participation (FCP) based on a sliding scale.

 

 

[1] United States Census Bureau. Quick facts New Jersey. Accessed on April 20, 2022. https://www.census.gov/quickfacts/fact/table/NJ/PST040218

[2] United States Census Bureau. Quick facts New Jersey. Accessed on April 20, 2022. https://www.census.gov/quickfacts/fact/table/NJ/PST040218

[3] Hogan, V. K., Lee, E., Asare, L. A., Banks, B., Benitez Delgado, L. E., Bingham, D., Brooks, P. E, Culhane, J., Lallo, M., Nieves, E., Rowley, D. L., Karimi-Taleghani, P. H., Whitaker, S., Williams, T. D. & Madden-Wilson, J. The Nurture NJ 2021 Strategic Plan. The State of New Jersey, Trenton, NJ, 2021