The Maternal and Child Health Block Grant Application and Annual Report, submitted annually to the Maternal Child Health Bureau (MCHB), provides an overview of initiatives, State-supported programs, and other State-based responses designed to address the maternal and child health (MCH) needs in New Jersey. The Division of Family Health Services (FHS) in the NJ Department of Health (NJDOH), Public Health Services Branch posts a draft of the MCH Block Grant 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 Family Health Services (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.
A brief overview of NJ demographics is included to provide a background for the maternal and child health needs of the State. While NJ is the most urbanized and densely populated state in the nation with 9.0 million residents, it has no single very large city. Only six municipalities have more than 100,000 residents.
NJ is one of the most racially and ethnically diverse states in the country. According to the 2018 New Jersey Population Estimates of race, 55.1% of the population was white (alone not Hispanic), 15.0% was black, 10.1% was Asian, 0.6% was American Indian and Alaska Native, and 2.2% reported two or more races. In terms of ethnicity, 20.0% of the population was Hispanic. The racial and ethnic mix for NJ mothers, infants, and children is more diverse than the overall population composition. According to 2016 birth certificate data, 27.1% of mothers delivering infants in NJ were Hispanic, 44.3% were white non-Hispanic, 13.3% were black non-Hispanic, and 11.7% were Asian or Pacific Islanders 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 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 in 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 2020 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 New Jersey State Health Improvement Plan, Healthy New Jersey 2020, Community Health Improvement Plans and the collaborative process with other MCH partners, FHS has selected the following State Priority Needs (see Section II.C. State Selected Priorities):
#1) Increasing Healthy Births,
#2) Improving Nutrition & Physical Activity,
#3) Reducing Black Infant Mortality,
#4) Promoting Youth Development,
#5) Improving Access to Quality Care for CYSHCN,
#6) Reducing Teen Pregnancy,
#7) Improving & Integrating Information Systems, and
#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 MCH Bureau, 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's families. During a period of economic hardship and federal funding uncertainty, 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 ten 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 #8 Physical Activity,
NPM #10 Adolescent Preventive Medical Visit,
NPM #11 Medical Home,
NPM #12 Transitioning to Adulthood,
NPM #13 Oral Health, and
NPM #14 Household Smoking.
State Performance Measures (SPM) have been reassessed through the needs assessment process. Five existing SPMs will be kept, and two old SPMs will be deleted. The existing SPMs which will be continued are:
SPM #1 Black Non-Hispanic Preterm Infants in NJ,
SPM #2 Children with Elevated Blood Lead Levels,
SPM #3 Hearing Screening Follow-up,
SPM #4 Referral from BDARS to Case Management Unit, and
SPM #5 Age of Initial Autism Diagnosis.
The old SPMs to be discontinued and replaced are: Regional MCH Consortia Implementing Community-based Fetal Infant Mortality Review (FIMR) Teams and Overweight High School Students.
Table 1 - Title V MCH Block Grant Five-Year Needs Assessment Framework Logic Model (See Supporting Document #1) summarizes the selected ten 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 state Title V program efforts which 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 which summarizes the Five-Year Needs Assessment process and includes the three-tiered performance measurement system with Evidence-Based or Informed Strategy Measures (ESM), National Performance Measures (NPM), 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 influence the NOMs.
The following is a brief overview of MCH services to put into context the Title V program within the State’s health care delivery environment. Healthy Women Healthy Families (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 been 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) Black Infant Mortality (BIM) municipality level activities focus on black NH women of child-bearing 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 (group prenatal care), and Doulas. Using two models, Central Intake Hubs (CIH) and Community Health Workers (CHW), the HWHF Initiative works to improve maternal and infant health outcomes including preconception care, prenatal care, interconceptual care, preterm birth, low birth weight, and infant mortality through implementation of evidence-based and best practice strategies across three key life course stages: preconception, prenatal/postpartum and interconception.
Central Intake Hubs (CIH) are a single point of entry for screening and referral of women of reproductive age and their families to necessary medical and social services. The Community Health Worker (CHW) model performs outreach and client recruitment within the targeted community to identify and enroll women and their families in appropriate programs and services. CIHs 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). HWHF and Doula grantees have received additional training on the NJCHART system, which is a new electronic health assessment and referral tracking system which can help ensure that all participating HWHF women are receiving prenatal care, have a primary care physician and/or an obstetrics and gynecology provider. Additionally, all HWHF newborns within the NJCHART system will have a record of insurance and pediatric medical provider information.
New Jersey is taking a targeted approach to reducing BIM rates through the enhancement of existing programs and creating new programs with the emphasis on this priority population. New Jersey recognizes the importance of a statewide collaboration of existing and non-traditional partners to address the SDOH which will be instrumental in moving the needle on Black Infant Mortality reduction. 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, the Office of the Attorney General and the Community will strategically collaborate to reduce black Infant mortality. FHS will be working very closely with NJDOH Office of Population Health and has created an FHS-Population Health Team (FHS-PHT) with the purpose of (a) ensuring health in all policies, (b) Leverage resources and inter- and intra-departmental collaborations, and, (c) addressing health disparities using a multi-sectorial approach.
Another program promoting the Life Course Perspective is the Maternal and Infant Early Child Home Visiting (MIECHV) Program which has expanded Home Visiting across all 21 NJ counties with 6,997 families participating in HV during SFY 2018 (7/1/2017 to 6/30/2018). 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 of early childhood (see Support Document #5). NJ is a FY2018 recipient of both a federal MIECHV Formula and Competitive grant. In January 2017, NJ was awarded a MIECHV Innovation Grant to implement and evaluate a training strategy for Home Visitors called Goal Plan Strategy (GPS) in collaboration with the Maryland Department of Health and Mental Hygiene.
The Child and Adolescent Health Program (CAHP) successfully applied in 2010 for two new federal grants to prevent teen pregnancy and promote youth development - the Personal Responsibility Education Program (PREP) and the Abstinence Education Program (AEP). In February of 2018, the NJDOH was awarded continuing funding for federal fiscal year 2018 and 2019 for PREP. AEP funding ended September 2018 and was be replaced by the Sexual Risk Avoidance Education (SRAE) Grant Program. NJ received the grant award in April 2018. In addition, CAHP now has a Coordinator to provide overall direction and collaboration amongst PREP, AEP and School Health grantees.
The new SRAE program will build upon the NJ Abstinence Education Program (NJ AEP) and will enable the state to continue implementing evidence-informed curricula to help youth abstain or delay sexual activity, to reduce pregnancy and Sexually Transmitted Diseases (STDs)/Sexually Transmitted Infections (STIs) and, where appropriate, to provide options that may include mentoring, counseling and/or adult supervision. NJ AEP has followed an SRAE approach for the past 4 years because it is a public health approach to sexual health education complimentary to the PREP program which provides significant education on Sexual Risk Reeducation in addition to avoidance. In the Summer of 2018 a full RFA will be released by NJDOH and new grantees will be selected for a two-year grant cycle. The NJ SRAE Program will provide medically accurate Lesbian, Gay, Bisexual, Transgender, Intersex and Questioning (LGBTIQ)-inclusive and trauma-informed sexual health education to teens aged 10-14.
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. Beginning in SFY18 NJ PREP will implement programing in high schools only. NJ PREP also seeks to help teens avoid and reduce high risk sexual behaviors through the promotion of abstinence, refusal skills, use of condoms and other forms of birth control. NJ PREP provides education on the following adult preparation subjects: Healthy Relationships, Parent/Child Communication and Adolescent Health. NJ PREP has responded to the invitation to accept funds for program continuation through September 30, 2020 and that will allow the implementation of programs to transfer over to only implementing in high schools and no longer in middle schools. In the current funding cycle, the state will continue to build on the success of the last six years by supporting three evidence-based models (EBM), two of which, The Teen Outreach Program (TOP®) and Reducing the Risk were selected from the Centers for Disease Control and Prevention’s(CDC) Evidence-based Teen Pregnancy Prevention (TPP) Program List. In addition, CAHP added the NJ based peer education program, Teen PEP, to the PREP Program beginning 10/1/18.
NJ’s Adolescent and Young Adult Health-Collaborative Improvement and Innovation Network (AYAH-CoIIN) funded through the National Resource Center (NRC) and AMCHP will begin an FQHC pilot to improve adolescent well visit rates and adolescent friendliness of the clinic. In January of 2017, data from a NJ FQHC report identified a greater than 50% disparity for adolescent preventive medical visit rates at FQHCs (averaging about 45% during the years of 2013-2015) as compared to private physician offices (averaging about 97%). The goal of the NJ AYAH-CoIIN is to increase the FQHC adolescent visit rate to achieve the Healthy People 2020 goal of 75.6%. To build up to the FQHC pilot, NJ's AYAH-CoIIN has spent significant time addressing the issue of youth engagement in health. To accomplish our mission, NJ has hired a young adult to work part-time (summer and winter breaks) in the CAHP, we have provided several trainings on creating effective youth adult partnerships, mentoring, and will host a youth leadership camp in the summer of 2018. In addition, NJ has completed a survey of over 100 college students and focus groups with 60 adolescents to collect information on the perception of well visits/preventative care of adolescents and young adults. The official project will end August 31, 2018 and data from the activities will be shared. NJ is committed to continuing the work of the AYAH-CoIIN in partnership with stakeholders such as NJAAP.
To improve access to health services, the NJDOH has provided reimbursement for uninsured primary medical and dental health encounters through the designated Federally Qualified Health Centers (FQHCs) since 1992 under the FQHC-Uncompensated Care Fund. In SFY 2017, the FQHC–Uncompensated Care Fund was funded at $28 million. In SFY2017, the FQHCs served a total of 151,871 uninsured residents and 490,420 uninsured visits were reimbursed. In SFY 2018, the FQHC–Uncompensated Care Fund was funded at $30 million and, the FQHCs served a total of 149,114 uninsured residents and 465,860 uninsured/underinsured visits were reimbursed.
In the area of children and youth with special health care needs (CYSHCN), the Newborn Screening and Genetic Services Program (NSGS) helps to ensure that all newborns and families affected by an abnormal screening result will receive timely and appropriate follow-up services. In terms of newborn screening for disorders detectable via the heel stick, all newborns receive screening for 61 disorders. In July 2018, screening for six lysosomal storage disorders including Krabbe, Pompe, Neimann Pick, Fabry, Gaucher, and mucopolysaccharidosis I (MPS I), was implemented. Follow-up services include notification and communication with parents, primary care physicians, pediatric specialists and others to ensure the baby has immediate access to confirmatory testing and treatment. NJ remains among the leading states in offering the most screenings for newborns.
NSGS meets and communicates regularly with several advisory panels composed of parents, physicians, specialists, and others to ensure NJ’s program is state-of-the-art in terms of screening technologies and operations and it is responsive to any current concerns regarding newborn screening.
Legislation mandating newborn pulse oximetry screening to detect Critical Congenital Heart Defects (CCHD) took effect on August 31, 2011. The inclusion of pulse ox screening questions in the Birth Defects and Autism Reporting System enable the capability to track individual level screening results. In addition, information on all infants with failed screens is reported by each birthing facility to the Birth Defects Registry via the Pulse Oximetry Module. As of April 2019, NJDOH had received reports of 28 infants with previously unsuspected critical congenital heart defects detected through the screening program. In 2012, NJ was one of six states awarded a 3-year HRSA grant for CCHD Screening. This demonstration grant enabled funding to contract with the NJ Chapter of the American Academy of Pediatrics (NJAAP) for hiring program staff, the development of resource materials, comprehensive educational offerings and support for an evaluation of CCHD screening in the neonatal intensive care unit (NICU). An article describing the collaborative work and lessons learned of the HRSA grantees was published in the Maternal Child Health Journal in January 2017. Since 2016, the CCHD Screening program is funded with State aid and collaborated with the NJAAP to implement program activities and provide technical assistance to birthing facilities. Although most states now have mandates or administrative rules requiring screening of newborns for CCHD, many questions remain about effective implementation of screening including screening for infants in the NICU.
The Early Hearing Detection and Intervention Program (EHDI) monitors compliance with the NJ universal newborn hearing screening law, and measures NJ’s progress in achieving the national EHDI goals of ensuring that all infants receive a hearing screening by one month of age, that children who do not pass screening receive diagnostic testing by three months of age, and that children who are diagnosed with hearing loss receive family-centered, culturally competent Early Intervention Services by six months of age. Hospitals have been very successful in ensuring that newborns receive hearing screening prior to hospital discharge, ensuring that children who did not pass their initial screening receive timely and appropriate follow-up remains an area for continued efforts. The NJ EHDI Program is working with hospitals, audiologists and physicians to identify “small tests of change” to identify successful strategies for improving outpatient follow-up rates for infants that did not pass initial screening.
NJ continues to have one of the highest rates of autism in the United States. According to the Centers for Disease Control and Prevention’s (CDC) 2014 prevalence figures published in the Morbidity and Mortality Weekly Report (MMWR) on April 27, 2018, cited NJ as having the highest prevalence rate of 29.3 per 1,000, or approximately one in 34 based on studies from four counties in NJ (Union, Hudson, Essex, and Ocean).
The Governor’s Council for Medical Research and Treatment of Autism (the Council) is in, but not of, the Office of the Commissioner at NJDOH; the Council has 14 members and is legislatively mandated. The Council’s Vision is to enhance the lives of individuals with Autism Spectrum Disorder (ASD) across their lifespans. The mission of the Council is to advance and disseminate the understanding, treatment, and management of ASD by means of a coordinated program of biomedical research, clinical innovation, and professional training in NJ. In 2012, the Council established a New Jersey Autism Center of Excellence (NJACE). The NJACE consists of a Coordinating Center, Clinical Research Program Sites, and multiple clinical and basic science Research Pilot Projects, including 3 Medical Home Pilots. The NJ ACE Coordinating Center provides common management and support functions to unify the NJ ACE Clinical Research Program Sites and Pilot Project grantees, increase efficiency and reduce costs. The Coordinating Center grant was awarded to Montclair State University. The NJ ACE Program Site and Pilot Project grantees develop and conduct clinical research projects with the potential to improve the physical and/or behavioral health and well-being of individuals with ASD. The Council is particularly interested in projects with potential direct clinical impact and those that address issues across the lifespan.
On July 1, 2009, the Early Identification and Monitoring (EIM) Program implemented the Birth Defects and Autism Reporting System (BDARS). BDARS is an invaluable tool for surveillance, needs assessment, service planning, research, and most importantly for linking families to services. NJ has the oldest requirement in the nation for the reporting of birth defects, starting in 1928. Since 1985, NJ has maintained a population-based birth defects registry of children with all defects. Starting in 2003, the Registry received a CDC cooperative agreement for the implementation of a web-based data reporting and tracking system. In 2007, NJ passed legislation mandating the reporting of autism. Subsequently, with the adoption of legislative rules in September 2009, the Registry added the Autism Spectrum Disorders (ASD) as reportable diagnoses and the Registry was renamed the Birth Defects and Autism Reporting System (BDARS), expanded the mandatory reporting age for children diagnosed with birth defects to age 6, and added severe hyperbilirubinemia as a reportable condition if the level is 25mg/dl or greater. The BDARS, at present, electronically refers all living children and their families to the Special Child Health Services Case Management Units (SCHS CMUs), which are within the Family Centered Care Services Program (FCCS).
NJ has been very successful in linking children registered with the BDARS with services offered through the county-based SCHS CMUs. However, the system did not further track children and families to determine if and what services were offered to any of the registered children. Added in 2012, the Case Management Referral System (CMRS) is used by the CMUs to track and monitor services provided to the children and their families. It electronically notifies a CMU when a child living in their county has been registered and referred to their unit. Included in CMRS is the ability to create and modify an Individual Service Plan (ISP), track services, create a record of each contact with the child and child's family, create standardized reports, and register previously unregistered children. In 2016, efforts were coordinated through the Integrated Systems Medical Grant to enhance SCHS CMUs’ reporting via CMRS regarding CYSHCN’s linkage to a medical home and transition to adulthood. Three SCHS CMUs collaborated in development of fields and to pilot edits in CMRS documentation. Training of the documentation changes was presented in 2016 and 2017 to all 21 SCHS CMUs.
CMRS was successfully adopted by all 21 counties and is live statewide. It provides the State Title V program with the opportunity for desktop review, referral, and linkage to care. As existing cases are migrated to CMRS, and newly referred cases are entered into the database, it is anticipated that trends in access to care and outcomes will be more measurable and readily tracked. Reconfiguring data reporting and tracking systems, as well as training and retraining State and community-based agencies, while keeping the needs of CYSHCN and their families center to our mission is our challenge.
The Family Centered Care Services (FCCS) program promotes access to care through early identification, referral to community-based culturally competent services and follow-up for CYSHCN age birth to 21 years of age. Ultimately, services and supports provided through Special Child Health Services Case Management Units (SCHS CMUs), Family WRAP (Wisdom, Resources, and Parent to Parent), and Specialized Pediatric Services Providers (SPSP) via Child Evaluation Centers (CECs), Cleft Lip/Palate Craniofacial, and Tertiary Care Services are constructs that support NJ’s efforts to address the six MCH Core Outcomes for CYSHCN. This safety net is supported by State and federal funds administered via community health services grants, local support by the County Boards of Chosen Freeholders, reimbursement for direct service provision, and technical assistance to grantees. Likewise, intergovernmental and interagency collaboration is ongoing among federal, State and community partners and families; i.e., Social Security Administration; NJ State Departments of Human Services’ NJ FamilyCare/Medicaid programs, Catastrophic Illness in Children Relief Fund, Children and Families, Labor, Banking and Insurance, Boggs Center/Association of University Centers on Disabilities, NJ Council on Developmental Disabilities, and community-based organizations such as the NJAAP, NJ Hospital Association, and disability specific organizations such as the Arc of NJ, the SPAN Parent Advocacy Network and the Community of Care Consortium (COCC). Consultation and collaboration with NJDOH programs such as the Birth Defects and Autism Registry, Early Intervention System, the Ryan White Family Centered HIV Care Network, Maternal Child Health, Special Supplemental Nutrition Program for Women, Infants and Children, Primary Care/Federally Qualified Health Centers, and HIV/AIDS, 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.
NJ remains successful in linking children registered with the Birth Defects and Autism Reporting System (BDARS) with services offered through the SCHS CMUs; CECs including the Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders (FAS/FASD) Centers; Cleft Lip/Palate Craniofacial Centers; Tertiary Care Centers; and Family WRAP. With CDC Surveillance grant funding, the system is undergoing enhancements to support tracking of CYSHCN referred to SCHS CM, and monitoring of services offered and/or provided to determine client outcomes. In 2014, State Case Management staffs launched a quality improvement project to enhance consistency in documentation within CMRS across the SCHS CMUs, and to improve upon CMRS’s data gathering capability. Efforts are ongoing, with FCCS staff presenting quality improvement findings to SCHS CMUs on a quarterly basis, since June 2015. SCHS CMU feedback in turn is incorporated into subsequent CMRS guidance and technical assistance. Information garnered from this and all future initiatives is anticipated to enhance NJ’s efforts to improve performance on the six core MCHB outcomes for CYSHCN.
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