Our FY21 comprehensive five-year Needs Assessment detailed the state’s Maternal and Child Health needs, strengths, capacity, and partnerships. It identified ten cross-cutting themes voiced by families and community members related to social determinants of health including poverty, transportation, housing, health care, environmental and neighborhood safety, family support, social cohesion, and more. Subsequent Needs Assessment updates highlighted the impact of COVID-19 on Maternal and Child Health populations and services. This year’s Needs Assessment update reflects the continued impact of the pandemic and other persistent and emerging themes. Relevant Title V domains [WMH, PIH, CH, AH, CYSHCN] are referenced; refer to the FY21 five-year Needs Assessment summary for program descriptions. 

Title V staff continued to lead many activities that inform our assessment of Maternal and Child populations and systems. A combination of formal structured Needs Assessment activities and ongoing open communication is essential to this effort.

Population Health Data In addition to monitoring Title V measures, we review data sources to assess status, trends, and disparities for Maternal and Child Health indicators. Data are shared with partners and the public and inform program strategies and allocation of funds.  Examples include:

• Title V staff review national survey data including Pregnancy Risk Assessment Monitoring System, Behavioral Risk Factor Surveillance System, National Survey of Children’s Health, and Youth Risk Behavior Surveillance System annually [All].
• NYSDOH maintains a Maternal and Child Health (MCH) data dashboard, updated in February 2023 [All]
• Title V staff lead a comprehensive maternal death and morbidity review process with the NYS Maternal Mortality Review Board. This period we completed reviews for 2019 and 2020 cohorts and released a statewide report on the 2018 cohort and an issue brief on perinatal mental health. Analysis of severe maternal morbidity, previously deferred due to pandemic redeployments, is underway [WMH]
• Title V staff completed a draft report Infant Mortality in New York State, 2016-2019, released in June 2022 [PIH]
• Title V funded an over-sample of the National Survey of Children’s Health for NYS, with enhanced sampling of Black, Hispanic, and Children and Youth with Special Health Care Needs. Data will be available in 2023-24 [CH, AH, CYSHCN]

Local Program Data Data collection and reporting are required for all Title V programs. These data support local program management and provide important insights to needs, services, and selected outcomes. Local providers are required to engage with their communities to assess community and client needs, which they share with Title V staff through grant reports, provider calls, and webinars. Examples include:

• All Title V local programs submit quarterly or bi-annual reports with both quantitative and narrative information on program activities, capacity, successes, challenges, and training and technical assistance needs. State staff review and discuss reports with local providers [All]
• Title V program staff convene monthly or quarterly calls with grantees to share information, review performance data, and discuss emerging and ongoing needs, challenges, and solutions [All]

• John Snow Inc. (JSI), the new Perinatal and Infant Community Health Collaborative training and technical assistance contractor, conducted a comprehensive assessment of resource and training needs for local programs, and is launching a dedicated website for current and new training resources [WMH, PIH]
• The state’s Growing up Health Hotline maintains data on information and resource needs based on calls received [WMH, PIH, CH]
• A new School Based Health Center data system is being developed, with system testing this year. The new system will streamline reporting, including Title V aligned performance measures [CH, AH, CYSHCN]
• The ACT for Youth Center for Community Action communicates with local adolescent health (AH) grantees about their training and technical assistance needs [AH, CYSHCN]
• Adolescent Health programs implementing evidence-based sexual health programs complete surveys, report on attendance, reach, and dosage of their selected curricula bi-annually through the ACT for Youth Center for Community Action’s online reporting system [AH]

• A web-based data system for the Children and Youth with Special Health Care Needs programs launched in 2021 and is now fully operational. Reports are being developed. [CYSHCN]

Quality Improvement & Evaluation Initiatives Title V staff lead numerous projects to learn about specific service and system needs, capacity, and effectiveness, from focused literature reviews to evaluation projects to intensive continuous quality improvement initiatives. Examples include:

• The Division of Family Health’s Bureau of Perinatal, Reproductive, and Sexual Health evaluated relationships between local home visiting programs (Perinatal and Infant Community Health Collaborative and Maternal, Infant, and Early Childhood Home Visiting) and birthing hospitals and developed a new referral tracking tool [WMH, PIH]
• The NYS Perinatal Quality Collaborative continued learning collaboratives with birthing hospitals on birth equity and one on opioid use disorder and neonatal abstinence syndrome [WMH, PIH]
• The Family Planning Program collected and analyzed survey data from local providers to assess partnerships with Syringe Exchange Programs and conducted a qualitative analysis of Family Planning Program annual reports [WMH]

• The Newborn Screening Program continued a continuous quality improvement initiative to improve lab collection and processing times, blood spot specimen quality, false positive screening results, timeliness in screening, and data completeness [PIH, CYSCHCN]
• The Early Hearing Detection and Intervention program is leading an ongoing project to use surveillance data to improve screening and follow-up [PIH, CYSHCN]
• Title V staff partnered with the Medicaid Health Home Serving Children to survey care managers about awareness of new eligibility criteria for Sickle Cell Disease, which will inform training and informational materials [CYSHCN]

Advisory Groups Title V staff convene and participate in many formal bodies that facilitate input from state, regional, and local partners including families and youth.  Examples include:

• Division of Family Health convenes the NYS Title V Advisory Council. With representation from Local Health Departments, community-based organizations, parent groups, and advocates, the council meets three times each year on a range of issues and initiatives [All]

• NYSDOH convenes the NYS Advisory Council on Lead Poisoning Prevention to provide input on the prevention and elimination of childhood lead poisoning [CH, CYSHCN]
• Staff are establishing a statewide Home Visiting Parent Advisory Committee. [WMH, PIH]
• Title V staff serve on the state Early Childhood Advisory Council and advises the Governor on early childhood issues [PIH, CH, CYSHCN|
• Title V staff participate in an inter-agency Adverse Childhood Experiences workgroup [CH, AH, CYSHCN]
• Title V staff are longstanding members of the NYS Youth Development Team. Plans for reconvening the team, which has not met since pre-pandemic, are under discussion [AH]
• Title V staff are exploring the development of a Youth Advisory Council. Initially the Youth Advisory Council will support an adolescent mental health campaign with plans for an ongoing partnership to advise on Adolescent Health topics [AH]
• Title V staff are members of the NYS Developmental Disabilities Planning Council and its Individuals and Families Committee, Policy Work Group, and Transitions Community of Practice [CYSHCN]
• Title V leadership participate in the inter-agency Deputy Commissioners’ Cross-Systems Work Group to focus on care coordination for and placement of youth with developmental disabilities [CYSHCN]

Assessing Children and Youth with Special Health Care Needs & their Families’ Needs Direct input from Children and Youth with Special Health Care Needs and their families is a special priority for NY’s Title V Program. We support many Needs Assessment activities integrated within other family supportive services:

• Regional Family Liaisons. The NYS Department of Health contracts with three Regional Support Centers, which are required to employ Family Liaisons who are parents of Children and Youth with Special Health Care Needs. This year Family Liaisons helped to develop a Health Conditions guide, social media flyer, and Resource Directory.
  • Family Engagement Sessions. From 2019-21, Family Liaisons conducted 63 family engagement sessions and 104 individual interviews with over 300 parents with Children and Youth with Special Health Care Needs and caregivers from 51 counties. The results were compiled in a Family Engagement Report that was shared with participant families in their preferred language, presented to Local Health Department Children and Youth with Special Health Care Needs programs, and informs family support activities.
  • County Needs Assessment Surveys. Regional Support Centers survey all Local Health Departments to determine local gaps, barriers, resources, and training and technical assistance needs. Regional Support Centers develop tailored improvement and technical assistance plans to meet their community engagement goals, and the findings inform statewide training and technical assistance planning.
  • County Family Engagement Requirements. Local Health Departments are required to engage families with Children and Youth with Special Health Care Needs in work groups, committees, and task forces to improve the system of care for Children and Youth with Special Health Care Needs. Families engage in local planning activities and their input informs training and technical assistance for the local programs.
  • Parent representation in Advisory Groups. A parent representative from Parent to Parent of NYS serves on the Title V Advisory Council. Parents with experience navigating state systems are being added to the Commissioner’s Cross-Systems Work Group led by the NYS Office of Children and Families.
  • Other Surveillance and Program Data. Title V staff review available data sources to monitor trends and emerging needs for Children and Youth with Special Health Care Needs, including data from the National Survey of Children’s Health, Local Health Department Children and Youth with Special Health Care Needs programs, and NYS Medicaid Health Homes Serving Children program. The New York State Profile of Children and Youth with Special Health Care Needs is updated annually and shared with partners.

Health Status & Needs of the State’s Maternal and Child Health population

Title V performance and outcome measures provide key information on health status and needs of NY’s Maternal and Child Health population and service systems. The impact of COVID-19 is now seen in 2020-21 data measures.

Analysis compared to last year’s application shows declines in primary and preventive health care for 2020-21, including well-woman visits [WMH], adolescent preventive visits [AH], transition support services [CYSHCN], and anticipatory guidance for children in School Based Health Centers [CH], although annual exams for Family Planning Program clients improved [WMH, AH]. Delivery of very low birth weight (VLBW) infants in Level III+ birthing hospitals and timeliness of newborn bloodspot screening samples were stable [PIH]. Maternal mortality continued to improve, but striking racial disparities persist [WMH].

All youth-serving programs report providing training for youth on adult preparation topics, and engagement of youth in local program planning and implementation increased [AH]. We saw improvements in developing birthing plans for Perinatal and Infant Community Health Collaborative clients working with Community Health Workers [WMH] and transition supports for youth with Sickle Cell Disease [CYSHCN]. Daily physical activity among children increased after declining last year [CH], while the incidence of childhood lead poisoning improved [CYSHCN].

As noted in past Needs Assessment Updates, the COVID-19 pandemic exacerbated previous disparities, while exposing and creating new needs. The 10 crosscutting themes voiced by community members in our five-year Needs Assessment summary remain salient. Providers report continued housing insecurity and related needs for training and technical assistance. Among the 19,000+ referrals made by Perinatal and Infant Community Health Collaborative programs this year, the top five categories were for clothing and baby care items, referrals to the Supplemental Nutrition Assistance Program for Women, Infants, and Children (WIC), food pantries, dental care, and housing [WMH, PIH]. Downstate providers identified basic support needs for the influx of people seeking asylum. In response, Title V programs have helped raise awareness and link client families to many community resources for breastfeeding and doula support, domestic violence and substance use, parenting education and support, health insurance enrollment, WIC, prenatal visits, job placement, financial literacy, and basic needs such as cribs, car seats, food, and housing.

While nearly all NYS children are insured, families with Children and Youth with Special Health Care Needs continue to experience special financial challenges for children’s health needs. Among children receiving the Children and Youth with Special Health Care Needs Support Services funding in 2022, the most common services funded included durable medical equipment, orthodontia, enteral formula and specialty foods, medications, medical-surgical services, and physician visits [CYSHCN].  Providers report that transportation and access to OB-GYN, mental health, and dental providers are barriers, especially in rural areas [All].

Mental health continues to be a prominent emerging theme. With staff reporting increasingly complex concerns among home visiting clients involving domestic violence, substance use, and social service involvement [WMH, PIH].  Our Maternal Mortality Review Board study found that 15% of 2018 pregnancy related deaths were due to mental health conditions [WMH]. Providers describe lingering social-emotional and mental health impacts of the pandemic among children and youth, with increasing behavioral issues, school absences, students feeling isolated and disconnected, and difficulties adjusting back to in-person learning [CH, AH, CYSHCN].

Title V Program & Maternal and Child Health Systems Capacity

In the wake of the pandemic, Maternal and Child Health programs and organizations are in a period of rebuilding.  There has been significant staff turnover from retirements or staff taking new positions, resulting in staffing gaps and loss of institutional memory and challenges in recruiting, hiring, and training new staff. For example, although the Perinatal and Infant Community Health Collaborative program increased Community Health Workers’ salary requirements to a living wage, recruitment and retention has been challenging as staff seek higher wages and more flexible remote options for better work/life balance. A provider survey identified Community Health Worker staff burnout and emotional wellness among the top training needs for Perinatal and Infant Community Health Collaborative grantees. See Section V.B.ii for further discussion of NYS Maternal and Child Health workforce development.

Despite significant challenges, there have been accomplishments in capacity-building in the past year with key themes and examples below.

Expanding & enhancing Maternal and Child Health-serving programs. Several key programs grew in number, reach, scope, inclusiveness, or other key elements this project year. For example:

• The Family Planning Program re-entered the national Title X network in 2022. Family Planning Program expanded their network to three new organizations and increased funding for all providers [WMH, AH].

• The Maternal and Infant Community Health Collaboratives program was renamed Perinatal and Infant Community Health Collaborative, reflecting a more inclusive approach to serving all pregnant and birthing people [WMH, PIH].
• Perinatal and Infant Community Health Collaborative and Maternal, Infant, and Early Childhood Home Visiting programs continued to successfully integrate virtual home visiting services, initially developed during the pandemic, to supplement in-person visits. Virtual visits accounted for nearly 60% of home visits in FY21.  [WMH, PIH].
• The Division received a five-year pediatric mental health grant that connects School Based Health Centers with Project TEACH, a statewide training, education, and consultation initiative to enhance primary care providers’ mental health care capacity overseen by the state’s Office of Mental Health [CH, AH, CYSHCN].
• The School-Based Dental Home program expanded the scope from the former dental sealant program to establish a consistent source of dental care for children including biannual examinations, screenings, preventive services, anticipatory guidance, referrals, and follow-up of untreated dental disease [CH, AH].
• The Comprehensive Adolescent Pregnancy Prevention program increased funding levels and expanded program requirements for youth-led programming to promote social-emotional well-being, alternatives to early sexual activity, and skills for successful transition to healthy adulthood [AH].
• Annual grants to Local Health Department Children and Youth with Special Health Care Needs programs were increased significantly, with corresponding increases in minimum program staffing and an increase from 49 to 52 participating Local Health Departments (of the state’s 58 total). Regional Support Centers developed a new internal web portal to support staff training needs. [CYSHCN]

Data, Training, and Technical Support. NYS Title V Program has invested strategically in this area to facilitate effective implementation of Maternal and Child Health initiatives. Examples include:

• The Perinatal and Infant Community Health Collaborative program procured for a data management information system and new training and technical assistance provider [WMH, PIH].
• NYS Perinatal Quality Collaborative disseminated the NYS Obstetric Hemorrhage Project Toolkit to support practices that reduce obstetric hemorrhage within birthing hospitals [WMH].
• The Rape Prevention and Education program created Regional Profiles for each of the 17 counties covered its six regional centers, with county-level data to support data-informed sexual violence prevention work [WMH].
• A perinatal psychiatrist was appointed to the Maternal Mortality Review Board to provide expertise for recommendations to reduce mental health-related maternal mortality [WMH].
• A supplemental one-year federal Telehealth grant from the Office of Population Affairs supported training, technical assistance, and infrastructure building for family planning telehealth services [WMH, AH].
• With support from one-time grant funding, Title V staff worked with the Regional Perinatal Centers and networks of affiliate birthing hospitals to enhance capacity for perinatal telehealth services and subspecialty care, focused on rural and other communities with reduced access to care [WMH, PIH].
• Title V staff facilitated training for Perinatal and Infant Community Health Collaborative and Maternal, Infant, and Early Childhood Home Visiting home visiting staff on CDC’s Learn the Signs Act Early campaign [PIH, CH, CYSCN].
• A new web-based data management and information system for Local Health Department Children and Youth with Special Health Care Needs programs was launched to support needs assessment, program management, and quality improvement [CYSHCN].

Program Standards, Monitoring, and Improvement. Clear and up to date regulatory frameworks, standards, and guidelines are essential to facilitating effective program implementation, oversight, and improvement. NY’s Title V program plays a key role in these efforts. Examples include:

• In collaboration with the NYSDOH Office of Primary Care and Health Systems Management, Title V staff are implementing new state legislation to approve operating certificates for midwifery birth centers that are accredited by recognized national organizations [WMH, PIH].
• Title V staff updated eligibility requirements for the Infertility Reimbursement Program to align with state insurance law that requires all large cap insurance plans to provide three cycles of in vitro fertilization and fertility preservation services and prevents discrimination based on disability, age, sex, sexual orientation, marital status, gender identity, and other characteristics [WMH].
• In 2020, NYS legalized compensated gestational surrogacy. Title V staff with other NYSDOH areas review and approve applicants and update guidance documents. There was an increase from 12 to 30 in the number of licensed surrogacy matching programs [WMH, PIH].
• Through the NYS Perinatal Quality Collaborative, implementation of universal protocols for opioid use disorder screening, assessment, and follow-up within birthing hospitals increased dramatically. The NYS Perinatal Quality Collaborative Birth Equity collaborative gathered data from birthing hospitals about patient experience and use of stratified data to inform improvement activities aimed at reducing disparities [WMH, PIH]
• The Newborn Screening Program reviews baseline data with each hospital during site visits and is expanding its monitoring plan to add updated performance summaries 6-8 months post-visit to assess improvement [PIH, CYSHCN].
• Among Title V youth-serving programs, 100% reported providing training on adult preparation subjects to support transition to adulthood, and 78% reported engaging youth in program planning and implementation, an increase from the prior year [AH].  

Health communication and education capacity. Social media and other communication platforms increase the potential to reach large, diverse populations. We incorporate a science-based health messaging approach to develop social media campaigns and cultivate partnerships with other agencies to disseminate information. Examples include:

• Statewide implementation of CDC’s Hear Her Campaign to reduce maternal morbidity and mortality [WMH]
• A state-developed public awareness campaign on Perinatal Mood and Anxiety Disorders [WMH]
• Re-launch of a media campaign for black and Hispanic male youth on drinking water vs sugar-sweetened beverages [AH]

• Collaboration with the NYS Council on Children and Families to promote a targeted media campaign to reach pregnant and newly parenting New Yorkers in counties with low home visiting program enrollment through their NYS Parent Portal [WMH, PIH, CH]

Workforce development. See Section V.B.ii for additional information.

Title V Partnerships & Collaborations

Partnership and collaboration are core to our work. Below are examples to highlight the range of partnerships and collaborations:

• Staff from the Bureaus of Perinatal, Reproductive, Sexual and Adolescent Health and the Bureau of Child Health collaborated on a Sexual Health Education Programming to Youth with Special Needs roundtable which was well-attended and positively received [AH, CYSHCN].

• School Based Health Center and Asthma program staff facilitated a webinar, resulting in nine School Based Health Center operators (22 clinic sites) joining the project, with nearly 50 staff trained, and 225 students served to date [CH, AH, CYSCHN].
• Within NYSDOH, Title V staff are collaborating to address significant increases in Congenital Syphilis, with the goal of developing and implementing a statewide strategic plan. Title V staff presented at the 2022 NYS Perinatal Association meeting. [WMH, PIH, CYSHCN]
• Title V staff continue to provide subject matter expertise to NYS Medicaid Program to implement care coordination and transition support services for Children and Youth with Special Health Care Needs through Medicaid Health Home Serving Children, including the addition of Sickle Cell Disease as a single qualifying condition. Staff assist with virtual Medicaid Health Home Serving Children site visits, communicate updates to Local Health Departments, and participate in a committee about the new Sickle Cell Disease criterion [CYSHCN].
• As part of ongoing strategic efforts to increase referrals for home visiting, staff collaborated with the NYS Office of Children and Family Services and the NYS Council on Children and Families on a Title V-funded media campaign about the NYS Parent Portal. Based on focus groups with home visiting-eligible parents, NYS Parent Portal language was revised from “home visiting” to “parenting support” to reduce stigma and perceived connection with Child Protective Services. The campaign directed pregnant and newly parenting New Yorkers in counties with low home visiting program enrollment to the portal for resources including childcare, home visiting, and afterschool programs. The three-month campaign resulted in over 100,000 clicks, with additional evaluation currently in process [WMH, PIH].
• Title V staff continue a longstanding collaboration with the Health Resources and Services Administration-funded Leadership Education in Neurodevelopmental and related Disabilities program based at Westchester Institute of Human Development. Title V staff participated in the May 2022 Leadership Education in Neurodevelopmental and related Disabilities virtual poster session [CYSHCN].

Operationalizing Needs Assessment Activities & Findings

Needs Assessment activities are operationalized within routine program systems and activities:

• Review existing population health surveys and surveillance systems annually
• Develop, maintain, and improve data management systems for local programs
• Integrate data reporting requirements in grant contracts with regular meetings and ongoing communication to discuss trends or emerging needs in local providers’ reports
• Integrate community engagement requirements, including community listening forums, in procurement processes
• Supporting statewide and regional centers that assess needs of priority populations and local providers and use those assessments to inform ongoing statewide and program-specific training and technical assistance activities
• Establish formal data sharing agreements with programs and agencies.

In turn, our program systematically applies findings from these and other Needs Assessment activities to a wide range of public health actions. For example:

• Community Health Workers use results of client assessments to develop individualized client care plans, and grantees use input gathered through their participation in community action boards to develop local strategies for addressing needs, including social determinants of health [WMH, PIH].
• NYSDOH issued a Health Advisory and accompanying patient educational materials (in multiple languages) on the importance and safety of COVID-19 vaccination for preconception, pregnant, postpartum and breastfeeding people [WMH].

• The Comprehensive Adolescent Pregnancy Prevention program and Personal Responsibility Education Program procurements applied the Adolescent Sexual Health Needs Index, a multi-dimensional zip code level indicator, to guide selection of priority communities, expanded the focus on social-emotional development and health equity, and included engagement of youth stakeholders in scoring applications [AH].
• The 2021 Family Engagement Report, based on input from families with Children and Youth with Special Health Care Needs, directly informs development of training and technical assistance resources, educational materials and resources for families, and county-specific family engagement plans. Regional Support Centers facilitated a webinar on accessible recreation, including opportunities to partner with the NYS Department of Environmental Conservation, which resulted in local projects to install a wheelchair charging station and add accessible swings in playgrounds. [CYSHCN]
• Health equity is a prominent foundational theme in our needs assessment. The Division of Family Health’s Racial Justice and Health Equity Team reviews all Division Requests for Applications and consults with program teams to incorporate revisions as needed [All].

Organizational Changes

The Program had several key organizational and leadership-level staffing changes:

• Shaunna L. Escobar, MD, MPH, CPH, EMHL, FAAFP was appointed Associate Medical Director for the Division of Family Health.
• The former Bureau of Women, Infant and Adolescent Health was renamed to Bureau of Perinatal, Reproductive, Adolescent and Sexual Health to support diversity, equity, and inclusion. Ben Wise, MS, CHES was appointed Associate Director, Joanne Gerber, MS, RN was appointed Assistant Director for Healthcare Based Perinatal Health, and Raemie Swain, MS was appointed Assistant Director for Reproductive Health.
• A new Bureau of Health Equity and Community Engagement was created to address disparities highlighted in the COVID-19 pandemic and build a foundation for future epidemic responses. The bureau focuses on expanding and developing mitigation and prevention resources and services for pandemic response, improving data collection and reporting, and building infrastructure for cross-sector partnerships to align public health, healthcare, and social care interventions. Jennifer Post was appointed as Director.
• A new Bureau of Data Analytics, Research and Evaluation was created to support research and data needs across the Division. Solita Jones, DrPH, MS was appointed as Bureau Director, with three Assistant Directors: Jo-Yu Chin, PhD (Population Health and Equity), Joanne Guo (Perinatal Health Surveillance and Quality Improvement), and Eileen Shields (Perinatal, Reproductive, and Sexual Health Analytics).