New York’s 2021 application presented a comprehensive five-year Needs Assessment (NA) summary describing the state’s MCH needs, strengths, capacity, and partnerships. The NA identified ten themes voiced by families and community members across the state through listening forums and surveys. These crosscutting themes relate to social determinants of health including poverty, transportation, housing, biases in health care, environmental and neighborhood safety, family support, social cohesion, and more. As noted, the five-year NA was conducted prior to the onset of the COVID-19 public health emergency. Thus, the primary focus of this year’s NA update is the impact of COVID-19 as the dominant emerging public health issue for 2020-21 on NYS’ MCH population and programs. Please refer to the five-year NA summary for descriptions of MCH programs referenced in this update.

 

Ongoing NA Activities:

 

Over the past year, Title V staff remained in close communication with local programs and partners who work directly with individuals and families. Partners shared emerging needs of MCH populations and programs on an ongoing basis through email and phone communication, program meetings and webinars, and quarterly grant reports.

 

In addition, several programs incorporated structured assessment activities related to COVID-19. For example, Regional Support Centers for CYSHCN included questions about COVID-19 in listening forums with families, and our Title V program held a webinar with local health departments in July 2020 to discuss concerns and gather feedback from families of CYSHCN about their pandemic experiences. As another example, Adolescent Health programs (CAPP and PREP) added questions about COVID-19 impact to biannual reports from grantees, following up directly with local program staff to elaborate on reports. In addition, the Title V MCHSBG program tracked nearly 14,000 calls to the state’s Growing Up Healthy Hotline in 2020. Title V MCHSBG staff also continued to monitor program and population surveillance data, along with relevant scientific literature and media.

 

This combination of structured assessments and more flexible ad hoc communication channels has been essential during this extended public health emergency. 

 

Health Status & Needs of MCH Population:

 

At the family and community level, the COVID-19 pandemic has laid bare and exacerbated previous health and socioeconomic disparities, while also creating new needs. The crosscutting themes voiced by community members in our five-year NA summary remain salient and have only been magnified by COVID-19. Among those ten themes, only transportation diminished in prominence this year because of the lockdown and expansion of virtual/remote services. At the same time, access to high-speed internet and technology/ hardware for remote work, school, and other services emerged as a new need, with familiar racial, ethnic, economic, and geographic disparities.

 

Specific emerging needs related to COVID-19 identified for MCH populations[1] this year include:

 

• Basic needs. Early in the pandemic, local MICHC programs reported an overwhelming need among client families for necessities, including food, diapers, toiletries, masks, and other PPE, as these items quickly became scarce or increasingly expensive based on supply. MICHC data for this period confirm an overall increase in referrals per client from 3.4 to 4.6, including notable increases in referrals for food pantry and clothing/baby care items, housing, family planning, and primary health care services for adults. To meet these immediate needs, NYSDOH allowed MICHC programs to use some unobligated funds to purchase emergency supplies for their clients in need (MWH, PIH). Data from the Growing up Healthy Hotline illustrate a wide variety of needs including referrals for prenatal care, Medicaid and other health insurance options (MWH, PIH, CH).

 

• Access to reliable internet. While not a new issue, disparities in technology were amplified urgently because of COVID-19, with the shift to remote programming for schools, community-based programs, and many health and other services. Lack of broadband internet access remains a concern in some rural communities, and adequate hardware and data are concerns for many, especially families with multiple adults and children needing to work and learn from home simultaneously. In addition, parents of CYSHCN expressed special concerns about having adequate equipment and support for virtual learning, combined with frustration about limited guidance related to special education and the loss of supportive therapeutic services and respite (All domains).

 

• Fear and distrust of hospital safety for birthing people. Many partners shared this concern, especially in the early waves of the pandemic. In response, a COVID-19 maternity task force convened by the Governor’s office in spring 2020 issued recommendations to diversify and ensure equity in birthing options. As an outgrowth of this work, the Title V MCHSBG program developed and launched an educational campaign aimed at increasing awareness of safety practices and rebuilding confidence in maternity care at birthing centers and hospitals and supporting mental health of pregnant and birthing people in New York. This campaign will continue through spring 2021, and resulting data available later in 2021 will inform ongoing efforts to address these needs. While there were initially many questions from providers and patients about the safety and guidelines for COVID-19 vaccines for pregnant and breastfeeding people, to date this has not persisted as a major ongoing concern within our Title V MCHSBG programs (MWH, PIH).

 

• Mental health & stress of pregnant and postpartum people. This was another common theme voiced by many providers, with accompanying needs to support providers in responding appropriately to support their patients and clients. Data from the Growing up Healthy Hotline confirm a large number of calls related to perinatal depression. As part of the rapid response to this need, the Title V MCHSBG program expedited the release of a previously-developed educational campaign (August-November 2020) on perinatal mood and anxiety disorders (PMAD), directing pregnant people and families to statewide resources, and directing primary care providers to Project TEACH (projectteachny.org) for additional clinical management supports. In addition, the NYS Perinatal Quality Collaborative (NYSPQC) conducted webinars on maternal mental health in conjunction with Project TEACH for OB-GYN providers.  In response to additional concerns heard from parents of infants about heightened stress around returning to work due to concerns about the safety and availability of affordable childcare, Title V MCHSBG programs helped connect families with childcare community resources (MWH, PIH, CH).

 

 

• Social-emotional health and well-being of children and adolescents, including CYSHCN. Concerns about increased anxiety and social isolation were widely voiced by parents and youth, consistent with emerging national research literature on this issue. Partners cited loss of social contact and relationships, community support systems and resources, established routines, healthy meals and snacks from schools and afterschool programs, and privacy for confidential and sensitive conversations (e.g., sexual health). Partners also described “Zoom fatigue” as a challenge for young people staying engaged and focused in programs, especially after long days of remote schoolwork. Mental health, anxiety, and social isolation concerns were the most prominent themes voiced by families of CYSHCN in the regional forums, with parents expressing special concern about the children’s potential “regression” resulting from loss of socialization in combination with decreased access to special education and therapy services (CH, AH, CYSHCN)

 

• Loss of key health care access points for children and youth. Closure of schools across the state caused serious barriers to continuation of School Based Health Center (SBHC) services, as schools would not allow operation in closed buildings. Most SBHC sites and all school-based dental sites were closed in 2020, and many local SBHC staff were redeployed to other assignments within their health systems to assist with the pandemic relief efforts. Many Family Planning clinics closed temporarily, and other reduced days/hours, apparent in an initial 60% reduction in client volume by April 2020. While many SBHCs and family planning clinics rapidly moved to offer telehealth visits, important limitations remained due to clinical staff availability and families not having the technology and time to participate. In addition, family planning providers noted that many patients - especially adolescents - expressed difficulty maintaining privacy and confidentiality during telehealth visits from home, with a preference for in-person visits even during lockdown.  As of spring 2021, most SBHC and Family Planning sites have fully or partially re-opened (CH, AH, CYSHCN).

 

• Lapses in preventive health care. Even when health care sites were open, local programs reported that many families were not obtaining routine health care visits because of lockdown and safety concerns about going into public health care settings, with implications for all MCH populations. MICHC data for this period show increases in referrals for family planning, and primary health care services for adults (MWH). Family Planning Providers described an increased need for outreach,  education and testing for sexually transmitted infections (STIs), especially in minority populations, with more difficulty reaching clients and concerns about increase in STIs across the state (MWH, AH). Adolescent programs reported diminished access and use of clinical reproductive health and family planning services, along with some schools removing sexual health activities from health classes because of privacy concerns in the remote learning environment (AH).  Lead Poisoning Prevention Programs noted a decrease in routine blood lead testing of young children (CH, CYSHCN). Providers across many programs reported significant concerns about babies and children of all ages not receiving necessary screenings, vaccines, and other routine preventive care. MCH home visiting staff worked locally with families of infants and young children to help prepare them for what to expect and help them navigate pediatric visits in the context of the public health emergency, and engaged in a multi-agency statewide effort to disseminate Learn the Signs, Act Early materials to enhance parent monitoring of their children’s development (CH, CYSHCN).

 

Population health data are another key source of information for our ongoing MCH needs assessment.  Analysis of the most recently available key data measures shows improvements in: maternal mortality (including measures of racial disparity), preconception health counseling, postpartum depression screening, and referrals for dental care and completion of birthing plans among pregnant women enrolled in MICHC services (MWH); provision of dental sealants through school-based clinics (CH); enrollment of children and adolescents with serious emotional disturbances or complex trauma in Medicaid Health Homes for children, and provision of transition supports for adolescents with special health care needs generally and with sickle cell disease (CYSHCN).

 

Unfortunately, measures related to timeliness of newborn bloodspot screening analysis and follow-up care for newborns with abnormal initial hearing screening results (PIH); preventive health care visits for adolescents (AH), and provision of financial or technical support to local water systems for community water fluoridation (CH) worsened for the most recent periods available. Data measures related to delivery of VLBW infants in Level III and IV birthing hospitals (PIH), well woman visits (MWH), and physical activity among children (CH) were relatively stable in the most recent period.

 

While these data are important and informative, it is important to recognize that because of standard lags in reporting and analysis of population health data, most reflect trends prior to 2020 and thus do not reflect any impact of COVID-19.

 

Title V Program & MCH Systems Capacity and Partnerships:

 

The pandemic and associated public health response have significantly challenged and stressed the capacity of programs and agencies at all levels.

 

At the state level, many staff were deployed full time or part time to support COVID-19 response efforts. For example, five staff who support the NYS Maternal Mortality Review and NYSPQC initiatives, two staff who oversee Regional Perinatal Centers, two Rape Prevention Education staff, most Family Planning staff, all SBHC staff, and all Adolescent Health staff were fully or partially deployed for part of this year. Title V MCHSBG staff have been deployed to a wide array of pandemic response duties including coordinating regional testing sites, serving as NYSDOH duty officers, fielding medical questions from vaccine PODs, providing epidemiologic and data analysis support, and more. While this has been a major stress to program staffing, it has also been essential to the state’s pandemic response capacity, and MCHB’s flexibility in allowing Title V MCHSBG staff to participate in these efforts has been invaluable. (All domains)

 

At the same time, other state staff have needed to absorb the work of these re-deployed staff, while rapidly shifting to handle extensive new activities to develop and implement COVID-19 responses within our MCH programs. Selected examples of the wide array of response activities embedded within Title V MCHSBG programs include:

• providing informational support to NYS birthing hospital teams (MWH, PIH);
• assisting in the development of MCH-related state COVID-19 guidance and protocols for pregnant people, infants, and children, including CYSHCN (All domains);
• developing guidelines for infection prevention in dental settings, teledentistry, and safe provision of dental care for CYSHCN (CH, AH CYSHCN);
• triaging questions from health care providers(All domains);
• creating and maintaining up to date COVID-19 trainings and informational resources for providers (All domains);hosting and participating in national and state COVID-19 related webinars (All domains);
• staffing the new COVID-19 Maternity Taskforce (MWH, PIH);
• collaborating with the Special Supplemental Nutrition Program for Women, Infant, and Children (WIC) and the NYC Department of Health and Mental Hygiene on a statewide effort to distribute emergency supplies to high-need food pantry sites (MWH, PIH, CH).

 

Staff accomplished this extensive new workload while rapidly adjusting to new remote work environments, caring for family members and parenting during remote schooling, and otherwise managing the impact of the pandemic on their own family and personal lives. This collective upheaval has resulted in significant personal and professional stress for our MCH workforce.

 

These workforce challenges and the larger context of the pandemic challenged the Title V MCHSBG program’s ability to manage competing priorities and implement previously planned program and policy activities within original timelines. For example:

• A two-day state conference on trauma, Adverse Childhood Experiences (ACEs), and resiliency for over 200 community-based organizations planned for May 2020 was cancelled and ultimately rescheduled as a virtual event for May 2021 (CH, AH, CYSHCN);
• The development of new program guidelines, policy manual, and funding procurement for family planning were delayed (MWH, AH);
• Joint site visits with staff from the NYSDOH Office of Health Insurance Programs to designated Health Homes for Children, planned for 2020, had to be postponed and rescheduled as virtual visits (CYSHCN);
• COVID-19-related industry shipping delays, in combination with a major winter snowstorm, affected the timeliness of the state laboratory receiving newborn screening samples (PIH, CYSHCN).

 

 

At the local level, staff redeployments were also common, especially for programs based in local health departments (e.g., LPPP, some MICHC and MIECHV) and health care systems (e.g., SBHCs). This was evident in an increase in referrals to other programs from local health departments. Similar to the state level, local staff had to rapidly adjust to remote working environments and virtual service delivery, while absorbing new and expanded workloads associated with the deployment of colleagues and emerging needs of families and communities served. Because many local programs intentionally recruit staff representative of underserved populations, local staff were themselves disproportionately impacted by COVID-19. Some agencies experienced staff resigning due to personal impacts of COVID-19 on their health, the health of family members, and the stress of managing remote schooling of their own children (All domains).

 

Highlights of additional specific local MCH program capacity challenges identified through our ongoing NA activities this year include:

 

• Need for timely COVID-19 information & guidance. As the pandemic rapidly unfolded, partners increased requests for timely guidance. For example, early in the pandemic, many clinical providers requested guidance on how to manage prenatal care, birthing care, breastfeeding, and mental health challenges for pregnant and postpartum people (MWH). In response, our Title V MCHSBG program, through NYSPQC, organized a series of provider-led webinars. The gradual decline in participation, from over 2000 participants in early spring 2020 sessions to under 300 for more recent spring 2021 sessions may reflect increasing confidence in this area. As noted above, similar informational and guidance needs were identified across all MCH populations, and Title V MCHSBG staff led or were engaged in developing guidance in a wide range of areas related to COVID-19.

 

• Increasing needs among clients and communities. By design, most Title V MCHSBG programs prioritize serving underserved, higher need areas and people. These same communities have been disproportionately impacted by COVID-19. The racial diversity of MICHC clients during this period increased, with the percentage of Hispanic and non-Hispanic black clients rising from 52% to 59% (MWH, PIH). CAPP and PREP programs reported significant concerns about the disproportionate impact of COVID on the well-being of adolescents already facing numerous challenges (AH).

 

• Loss of access to homes, schools, and other community settings. Programs centered on face-to-face home-based interactions – including MCH home visiting programs (MICHC, MIECHV), Lead Poisoning Prevention Program services, Early Intervention services, and others - faced fundamental challenges to ongoing family engagement and service provision (MWH, PIH, CH, CYSHCN). Similarly, youth-serving programs typically based in school buildings, community centers, libraries, or other community settings – such as CAPP, PREP, SRAE, and school-based health and dental clinics – were challenged to consistently engage with youth, to implement certain community-based program elements (such as volunteer and recreational youth development  activities), and to connect youth with other needed community resources (CH, AH, CYSHCN). While the transition to remote services and other program adaptations partially mitigated these challenges (see below), they clearly resulted in some loss of engagement and quality. As of spring 2021, some programs have begun to resume in-person activities, but this is uneven based on geography and other factors.

 

• Need to transition to virtual service delivery. Many local programs rapidly transitioned to virtual services. This shift clearly reduced in-person community outreach activities and the scope and quality of some services. For example, adolescent programs noted the loss of “organic” networking and “drop-in” relationships and communication with youth and other colleagues.     Even with new virtual formats, not all programs, youth, and families had technology (hardware and internet service) to participate (AH).

 

At the same time, this shift created some innovation and opportunities, with many programs finding creative ways to ‘pivot’. For example, more frequent telephone and email communication nearly doubled the overall number of contacts between MICHC Community Health Workers and clients in this period (MWH, PIH). Rape Prevention Education regional centers were able to leverage supplemental CDC funding for COVID-19 response support partners in adapting, implementing, and evaluating prevention strategies through virtual platforms and other innovative techniques (MWH, AH). The ACT CCA worked with program model developers to ensure that evidence-based programs could be adapted with fidelity in virtual environments (AH). Family Planning clinics expanded social media outreach and implemented curbside pick-up of contraceptives and modified workflows for in-person clinic services (MWH, AH). Sickle Cell program grantees reported that during this period, youth with sickle cell disease had more stable days with fewer symptoms, and that they attended telehealth appointments more regularly and consistently than traditional clinic visits, with more participation and consistent engagement and dialogue with the transition navigators and with peer groups for both youth and their parents (CYSHCN). As services start to re-open, local programs now need to assess which aspects of telehealth, remote and virtual services to continue and how to balance these with return to traditional in-person services post-COVID.

 

 

• Delays in planned program activities & expansion. Many programs experienced delays in various activities due to the pandemic. For example:

• local MICHC agencies were challenged to hire new Community Health Workers (CHWs) under their expansion grant awards (MWH, PIH);
• some local MIECHV programs were unable to fully support Continuous Quality Improvement (CQI) projects that required parent-child observation and experienced delays in rolling out a new streamlined referral tool in collaboration with WIC programs (MWH, PIH, CH);
• the launch of a new rural perinatal telehealth was delayed due to shortages of (Information Technology) IT staff until fall 2020 (MWH, PIH);
• a planned statewide expansion of NYSPQC’s opioid use/neonatal abstinence syndrome project was delayed from spring to fall of 2020 (MWH, PIH);
• previous momentum in transitioning SBHCs into the Medicaid Managed Care model was slowed (CH, AH, CYSHCN);
• implementation of Sexual Risk Avoidance Education (SRAE) programming was challenged to retain participants and maintain program fidelity with the shift to online learning modules (AH);
• new Regional Support Centers for CYSHCN, which launched in fall 2019 shortly before the arrival of COVID, had to rapidly adjust and carefully balance plans for establishing new working relationships and communication channels with LHD-based CYSHCN programs, most of whom were redeployed to other local COVID-19 response work, and faced challenges spending additional legislative awards (CYSHCN).

 

• Delays in data collection & reporting. Several programs experienced delays in data submissions due to staff and resource diversions related to COVID-19 response. For example:
• birthing hospitals were delayed in submitting NYSPQC QI project data related to obstetrical hemorrhage improvement practices (MWH);
• final months of data collection for the Infant Mortality CoIIN were impacted by local agencies’ inability to meet with clients and collect surveys (PIH);
• shipping delays impacted newborn bloodspot screening early in the pandemic (PIH);
• local CYSHCN programs were delayed in submitting 2020 program data (CYSCHN).  

 

 

Operationalizing Needs Assessment Activities & Findings: 

 

Despite the dominant challenges of COVID-19, NY’s Title V MCHSBG program continued to pursue key efforts to operationalize NA activities and responses. One important element of this work is increasing the routine use of community listening forums as an ongoing community engagement and needs assessment strategy across all Title V MCHSBG programs. To operationalize this, the Division intends to incorporate this as a key step in the concept development for all new grant procurements. Initial performance data demonstrate great success, with the percentage of DFH procurement processes that completed community listening forums as part of the concept development rising from 0% at baseline in 2018-19 to 50% in 2019-20. While this work has necessarily slowed in 2020 due to the public health emergency, it will remain a key aspect of our work going forward.

 

A second key strategy to operationalize needs assessment activities is continued investment in collection, analysis, and dissemination of information from an array of population health surveillance and data systems, which are foundational to ongoing MCH needs assessment as a core public health function. Specific examples of this approach underway in NY’s Title V program include:

 

• Maternal Mortality. NY’s Title V program continues to lead this work, in conjunction with the NYS Maternal Mortality Review Board (MMRB). The statewide Maternal Mortality Review  (MMR) Initiative seeks to identify and address factors affecting maternal mortality and morbidity through comprehensive surveillance activities, data analysis, and review of deaths. Authorizing legislation for the NYS MMRB was enacted in August 2019, providing explicit powers and protections for the NYSDOH in its role supporting the MMRB. In August 2020 the report of maternal deaths for 2012- 2014 was published; a report for 2016-17 is under development and analysis of the 2018 cohort is underway. Several key public health initiatives, including a media campaign and NYSPQC quality improvement projects, have been launched to respond systematically to findings in this area (MWH).
• Infant Mortality & Morbidity. This year, NY’s Title V program carried out an expanded plan for analysis of infant mortality and morbidity data, completing a draft New York State Infant Mortality Report, highlighting collaborations and describing trends in NYS’s infant mortality for 2002-2016. Additional analysis of geographic, racial, and ethnic disparities and determinants is currently underway and will be incorporated in the final report to align with a Feb 2021 amendment to state public health law (PIH). 
• Adverse Childhood Experiences (ACEs). In 2016, the NYSDOH began collecting regional and state-level ACEs data from over 9,000 adults through the Behavioral Risk Factor Surveillance System (BRFSS). The NYSDOH Division of Chronic Disease Prevention leads this work, and Title V MCHSBG staff are engaged in planning and use of data. A second round of data was collected in 2019, and analysis is currently underway. Going forward, NYSDOH plans to implement the ACEs module every three years, providing an important ongoing snapshot of ACEs prevalence and impact at the population level (All domains).
• Social-Emotional Assets for Children and Youth. Title V MCHSBG staff developed and implemented a validated tool for measuring positive developmental social-emotional assets among children and youth.  The tool measures self-efficacy, healthy decision-making and youth/adult connectedness as key constructs identified by the Search Institute as part of their nationally recognized 40 Developmental Assets framework. The three constructs will be used together incorporating pre-post surveys and measuring specific aspects related to social-emotional assets in children and adolescents. https://www.search-institute.org/our-research/development-assets/developmental-assets-framework. Initial implementation is being trialed through the Prevention (CAPP) initiative, with the intention to expand to other programs based on that experience (CH, AH).
• Children and Youth with Special Health Care Needs. In 2020 NY’s Title V/CYSHCN program completed and published an updated New York State Profile of Children and Youth with Special Health Care Needs for 2017-2018, compiling key measures for CYSHCN from the National Survey of Children’s Health (NSHC). The program is currently reviewing 2018-2019 NSCH data, along with data reported by NY’s Title VMCHSBG funded local health department-based (LHD) CYSHCN Program and the NYS Early Intervention Program under Part C of the federal Individuals with Disabilities Act. We will continue to produce annual updates as key sources of information to support work in this area. In addition, we are continuing to pursue plans to collaborate with the U.S. Census Bureau to conduct an enhanced oversampling of Black/African-American, Hispanic, and CYSHCN for the 2021 NYS NSCH sample (CYSHCN).

 

Organizational and leadership changes:

 

Kirsten Siegenthaler, PhD assumed the role of NYS Title V Director in April 2021, following the Lauren Tobias’ departure from NYSDOH. Dr. Siegenthaler provides leadership across the diverse portfolio of the Division of Family Health,  including supporting the Title V Maternal and Child Health Services Block Grant and the DFH’s programs that serve women, infants, and children, and adolescents, including children and youth with special health care needs (CYSHCN). Dr. Siegenthaler has over 18 years of experience at the NYSDOH and has served as the Assistant Director of the Bureau of Early Intervention in the Division of Family Health, the NYS HIV Surveillance Coordinator, and the Lead Evaluator for the NYS Cancer Services Program before becoming the Associate Director for the Division of Family Health in 2018.

[1] Key for specific relevant MCH population domains: MWH=maternal and women’s health; PIH= perinatal and infant health; CH=child health; AH=adolescent health; CYSHCN=children and youth with special health care needs.

Our FY21 application presented a comprehensive five-year Needs Assessment (NA) summary of state’s MCH needs, strengths, capacity, and partnerships. The NA identified ten cross-cutting themes voiced by families and community members. These themes related to social determinants of health including poverty, transportation, housing, biases in health care, environmental and neighborhood safety, family support, social cohesion, and more. Our subsequent FY22 NA update focused primarily on the impact of COVID-19. This year’s FY23 NA update reflects the continued impact of the pandemic, along with other persistent and emerging themes for our MCH populations and service systems.

 

Throughout this NA update, relevant Title V domains [WMH, PIH, CH, AH, CYSHCN] are referenced for selected examples. Please refer to the FY21 five-year NA summary for descriptions of MCH programs referenced in this update. 

 

Ongoing NA Activities:

 

This year Title V staff led a variety of activities that inform our ongoing assessment of MCH population and system needs. As noted last year, a combined approach of formal structured NA activities with more ad hoc ongoing open communication has proven essential throughout the public health emergency and continuing to present.

 

Population Health Data

 

In addition to monitoring Title V performance and outcome measures, we periodically review population data from a variety of sources to assess status, trends, and disparities for key MCH indicators. These data are shared with partners and are used to inform program strategies and allocation of funds. Examples from the past year include:

• In collaboration with the state’s multidisciplinary NYS Maternal Mortality Review Board (MMRB), DFH leads a comprehensive process to identify and review all maternal deaths. The focus is on describing the scope and distribution of maternal deaths and identifying key contributing factors and preventability. The first MMRB report for the 2018 cohort was released in April 2022 [WMH].
• Title V funds were allocated to conduct an over-sample of National Survey of Children’s Health (NSCH) data for NYS, with enhanced sampling of Black/African American, Hispanic, and CYSHCN. A project sampling plan was finalized this project period, to be implemented in 2022, with data available in 2023 [CH, AH, CYSHCN].
• Title V staff review data from relevant national surveys including Pregnancy Risk Assessment Monitoring System (PRAMS), Behavioral Risk Factor Surveillance System (BRFSS), NSCH, and Youth Risk Behavior Survey (YRBS) at least annually [All].
• In fall 2021, we updated the Adolescent Sexual Health Needs Index (ASHNI), which is a multi-dimensional ZIP code level indicator incorporating adolescent sexual health outcomes with demographic and community level predictive factors and which is used to prioritize available resources to the highest need communities. The updated ASHNI will be used for the 2022 Comprehensive Adolescent Pregnancy Prevention (CAPP) and Personal Responsibility Education Program (PREP) procurements [AH].

 

Program Utilization & Outcome Data

 

Data collection, management, and analysis is integrated across Title V-funded programs. In addition to supporting local program management, these data provide important insights to MCH population needs, service capacity/utilization, and selected outcomes. Examples from the past year include:

• A new PICHC data management information system (DMIS) for the Perinatal & Infant Community Health Collaborative (PICHC) was launched in April 2021, and a new five-year DMIS vendor contract will be awarded to begin September 2022 [WMH, PIH].
• The state’s Growing Up Healthy Hotline maintains data on information and resource needs based on calls received [WMH, PIH, CH].

• A new data system for the School-Based Health Center (SBHC) program is under development. It will allow for more streamlined and accurate reporting, including new performance measures related to physical activity and nutrition aligned with Title V priorities [CH, AH, CYSHCN].
• A web-based data system for local health department (LHD)-based CYSHCN programs was launched in October 2021 through the state’s Health Commerce System to streamline and improve the accuracy of data collection, analysis, and reporting.

Communication with Local Providers

 

As a fundamental requirement of grant funding, Title V-funded local providers are expected to engage with their communities and continuously assess community and client needs. Title V staff also communicate continuously with local partners through grant reports, regular scheduled provider calls, webinars, and ongoing ad hoc communication.  All of these are critical vehicles for learning about ongoing and emerging MCH needs, challenges, and successes. Examples of ongoing, continuous communication include:

• Review and discussion of quarterly or bi-annual contractor reports., regular monthly convene monthly or quarterly calls with local grantees to share information, review data and performance measures, ad hoc discussion to address emerging issues. [All].
• The Title V-funded Assets Coming Together (ACT) for Youth Center for Community Action (CCA) engages in continuous ongoing communication with local adolescent health grantee programs about their training and technical assistance (T&TA) needs. [AH, CYSHCN].

 

Quality Improvement & Evaluation Initiatives

 

Title V staff lead and participate in a range of special initiatives and projects to learn about service and system needs and effectiveness. These range from focused literature reviews to formal evaluation projects and to extensive continuous quality improvement (CQI) initiatives that integrate ongoing assessment of MCH outcomes and services with testing and implementation of specific improvement strategies matched to the issue. Examples from the past year include:

• The Newborn Screening Program is engaged in an ongoing CQI initiative to reduce collection and processing time for labs, improve blood spot specimen quality, reduce false positive screening results, and improve timeliness in screening for time-critical conditions [PIH, CYSCHCN].
• The NYS Perinatal Quality Collaborative is leading an interdisciplinary learning collaborative focused on implicit bias in birthing care, following the model of our numerous successful NYSPQC projects. [WMH, PIH].
• The Bureau of Women, Infants, and Adolescent Health (BWIAH) within DFH, with support from several Title V-funded MCH Catalyst Program graduate student interns, carried out special projects to strengthen engagement of families in MCH home visiting, enhance collaboration between MCH home visiting programs and birthing hospitals, and develop data collection instruments for evaluating sexual violence prevention programs [WMH, PIH, AH].

 

Enhanced Strategies for Assessing the Needs of CYSHCN & Their Families

 

Direct input from CYSHCN and their families is a special priority for NYS’s Title V Program. We have allocated Title V and other funds to support an array of NA activities, integrated within other family supportive services. These include:

 

• Regional Family Liaisons. DFH has allocated funding to support contracts with three Regional Support Centers (RSCs), which are HRSA designated University Centers of Excellence in Developmental Disabilities, to support families and provide T&TA to Local Health Department (LHD) CYSHCN programs. Each RSC is required to employ a Family Liaison (FL) as a requirement of the funding opportunity. The FL are parents of CYSHCN whose lived experience and knowledge informs RSC activities.
• Family Engagement Sessions. The regional FL are responsible for conducting family engagement sessions with CYSHCN families. These sessions use standardized questions to assess the needs of CYSHCN families, including questions about the impact of COVID-19. From 2019-2021, over 300 parents and caregivers of CYSHCN from 51 NYS counties participated in 63 small group sessions and 104 individual family interviews (primarily virtual).
• County Needs Assessment Surveys. RSCs also conduct surveys with each county to gather feedback and determine local gaps, barriers, resources, and T&TA needs. Counties are invited to develop tailored improvement and TA plans to help meet their community engagement goals with TA from the RSCs.
• County Family and Community Engagement Requirements. LHD CYSHCN programs are required to engage CYSHCN families in work groups, committees, task forces, and advisory committees to improve the system of care for CYSHCN. Families are engaged in local planning activities such as the county Community Health Assessment (CHA), and their input informs training and TA for the local programs.
• Other Surveillance and Program Data. Title V staff routinely review available public data sources to monitor trends and identify emerging needs for CYSHCN, including NSCH data and NYS Medicaid Health Home for Children data. In 2021, we issued the New York State Profile of Children and Youth with Special Health Care Needs, 2018-2019, an annual state report synthesizing demographic, health status, and service needs of NYS’s CYSHCN population.

 

Health Status & Needs of the State’s MCH population

 

Findings from Analysis of Population & Performance Data

 

Population health data and other specific performance measures collected from Title V-funded programs provide key information related to health status and needs of NYS’s MCH population and service systems. Notably, we may begin to see the early impact of COVID-19 in this year’s analysis, as the measures reported here are for the 2019-20 period.

 

Analysis of the most recently available data shows continued improvement in maternal mortality rates and stable rates for well-woman visits statewide. However, we observed declines in documented medical exams for women served in NYS Family Planning Program sites and development of birthing plans for pregnant clients served through the MICHC program, (the latter may reflect changes in data reporting) (WMH). Delivery of percent of very low birth weight (VLBW) infants in Level III+ birthing hospitals and timeliness of newborn bloodspot sample delivery were stable from the previous year’s analysis (PIH). The incidence of elevated blood lead levels among young increased (CYSHCN), and daily physical activity among children ages 6-11 declined from the previous year (CH), as did documentation of anticipatory guidance for physical activity and nutrition for children and youth enrolled in School-Based Health Centers (CH/AH). We observed continued improvement in the percentage of youth serving programs that engage youth in program planning and that provide training for youth on adult preparation topics, but preventive medical visits for adolescents decreased (AH). Provision of transition supports for youth with sickle cell disease (SCD) among SCD contractor programs improved, but the overall statewide percentage of youth with special health care needs who received services to support transitions to adult health care declined (CYSHCN).

 

Emerging & Persistent Themes

As emphasized in last year’s NA Update, the COVID-19 pandemic laid bare and exacerbated previous health and socioeconomic disparities, while also exposing and creating new needs for families and communities. The 10 crosscutting themes voiced by community members in our five-year NA summary remained salient over the last year, with selected themes described below emerging (or re-emerging) as prominent needs.

 

Improving the accessibility, quality, and equity of health care services continues to be a high priority for individuals and families in NYS. Telehealth services have emerged as a promising approach for strengthening capacity to provide services, tailored to the needs of urban and rural areas. We have expanded telehealth services for reproductive and family planning services, and as noted above we are working with Regional Perinatal Centers to assess and support needs for telehealth among birthing hospitals [WMH, PIH].

 

State and local partners have noted rising needs for mental health and substance use services, demonstrated by an increase in referrals for mental health services overall and specifically for referrals not completed because of limited provider capacity. These unmet needs may result from an inadequate number of providers as well as insufficient ability of existing providers to work with pregnant people and to provide Medication-Assisted Treatment (vs Abstinence-Based Treatment) for people with substance use needs [WMH].

 

Local partners report continued concerns about children falling behind on routine primary and preventive care [CH, AH]. They also note persistent vaccine hesitancy among pregnant people and parents in some communities, and a general distrust of government and public services for many undocumented people [All]. 

 

Families describe several key barriers to getting care for CYSHCN. Families in rural areas identified limited access to specialists and lack of high-quality health care facilities for CYSHCN, resulting in delayed diagnoses and lack of continuity for meeting children’s needs during key periods of development. Families in urban areas reported other challenges related to transportation and accessibility of services for CYSHCN. Statewide, CYSHCN families who do not speak English or who are Deaf or hearing impaired reported even more difficulties finding services for their children, including translation services and access to bilingual providers. In addition, families noted inadequate family-professional relationships including poor bedside manner, dismissiveness, and insensitivity from providers as frequent concerns [CYSHCN].

 

Families also continue to experience challenges in meeting their basic needs. Among the nearly 8,000 referrals for Title V-funded MICHC CHW clients last year, four of the top five referral categories were for basic needs including clothing and baby care items, housing assistance, food pantries, and WIC [WMH, PIH]. Partners report affordability and scarcity of “life supplies” including food and baby formula - due to rising prices, recalls, and supply chain issues - as major concerns for families [PIH]. Housing insecurity is also a major worry, as families report being priced out of their neighborhoods with gentrification, struggling to pay for housing due to rising costs and job loss, and rising concerns about eviction with the expiration of moratoriums [All domains].

 

Social-emotional and mental health continues to rise in prominence as key concerns raised by individuals, families, and service providers across the life course. Data demonstrate increasing rates and racial disparities for depression symptoms, and inadequate mental health services, for pregnant and postpartum people [WMH]. SBHC staff report growing concerns about mental health among students, resulting in a need for additional mental health staff [CH, AH, CYSHCN]. Youth-serving programs continue to report significant challenges in recruiting, engaging, and retaining youth in remote programming, describing a phenomenon of significant “screen-time burnout” and “Zoom Fatigue” that are taking a serious toll on young people’s social and emotional well-being [AH]. CYSHCN parents and providers report concerns about the impact of COVID-19 on children’s social and emotional development and well-being. In addition, parents of CYSHCN themselves report significant levels of stress and anxiety associated with caring and continuously needing to advocate for their children’s special health care needs, while foster and adoptive families of CYSHCN described additional challenges in meeting the behavioral and mental health support needs of children with trauma experiences [CYSHCN].

 

Title V Program & MCH Systems Capacity

 

Consistent with last year’s NA Update, the pandemic continues to have significant impact on the capacity of state and local MCH programs. At the state level, most staff deployments to assist with COVID-19 response have been completed. However there has been a great deal of staff turnover, with many staff retiring from public health or taking new positions outside the Division/Title V Program. Although DFH has been able to pursue recruitments to fill resulting vacancies and some new positions, recruitments have been challenging, and when new staff are hired there are significant extended needs for orientation and training. Current staff are often spread thin to cover existing and emerging work, in the context of significant losses in institutional memory. This dynamic of staffing losses, high turnover, and anticipated prolonged rebuilding of workforce capacity is a theme that spans across nearly all State level Title V units and programs.

 

A similar dynamic is occurring within local MCH organizations, which are also going through periods of major rebuilding. During the height of the pandemic, many programs experienced significant declines in services and clients because of school and other site closures, transportation limitations, and social distancing requirements. Most programs that discontinued services have now resumed operations, with varying limitations on in-person service delivery. Some programs that closed completely during the pandemic (e.g., one county CYSHCN program, two SBHC sites) are not expected to re-open. We have identified needs for training and re-training of local staff on program fundamentals, from contracting and work plans to specific program activities. We have also taken steps to address workforce equity within Title V-funded programs; as one example, the most recent PICHC RFA required a living wage for all staff. 

 

Two major initiatives have been pursued to help address these workforce challenges. First, NYS launched the New York State Public Health Corps (NYSPHC) to build public health capacity for current and future public health emergencies, bolster the state’s public health infrastructure, improve effective public communication and education around public health efforts, and strengthen community level connections and partnerships. In collaboration with community partners, NYSDOH will recruit and train up to 1,000 NYSPHC Fellows, who will serve in state and local agencies, including 9 fellows assigned specifically to DFH/Title V Programs. In addition, NYSDOH was allocated $16 million, which is from a larger $66M federal Public Health Crisis Workforce grant, to support hiring additional clinical staff at School-Based Health Centers for the period through June 2023, with the potential for further extension.

 

Despite these significant challenges, there have been many accomplishments related to capacity-building across NYS’s Title V Program during the past year. Selected examples include:

 

• Adaptation of services to virtual and hybrid environments. Going back to the first peak of the pandemic in NYS in spring 2020, MCH programs and providers have demonstrated tremendous creativity, resilience, and compassion for the communities and people they serve. As routine in-person programming came to an abrupt halt, programs developed strategies for engaging and supporting clients remotely. For example, MICHC and MIECHV replaced in-person home visits with remote visits, phone, and email communications [WMH, PIH]. Some SBHCs offered telemedicine services [CH, AH, CYSHCN] and the ACT CCA worked with local CAPP, PREP & Sexual Risk Avoidance Education (SRAE) programs to help them adapt and implement evidence-based programs with fidelity within the confines of a virtual environment [AH]. SBHCs are also using telehealth to supplement in-person mental health services, which has provided additional options for patient engagement, offers a better understanding of student’s home environments, and appears to be associated with a decrease in missed or canceled appointments [CH, AH, CYSHCN]. 

 

• New program data systems. As noted, in the past year we have invested in improved data management information systems for several key Title V-funded programs, including MICHC/PICHC [WMH, PIH], SBHCs [CH, AH, CYSHCN], and LHD CYSHCN programs [CYSHCN]. These systems will expand the scope of data collected from local providers while improving the quality, accuracy, and efficiency of data collection, management, and analysis.

 

• Quality Improvement Initiatives/ Learning Collaboratives. As described, we are leading a growing portfolio of quality improvement projects (See Ongoing NA Activities). In addition to enhancing our understanding of the needs and effectiveness of MCH services, these initiatives strengthen state and local organizational capacity for identifying, testing, disseminating, and institutionalizing best practices across a wide range of MCH service settings. [WMH, PIH].

 

• Prioritizing investments in Maternal, Perinatal & Infant Health programs. The recent PICHC RFA resulted in a net increase of three local providers, expanding both the geographic coverage and number of clients to be served through the program. Title V staff have provided significant subject matter expertise this year to support a home visiting pilot in four counties, as part of the state’s First 1000 days Medicaid initiative, through which managed care organizations support staffing Obstetrician and Pediatric offices with mental health social workers and peer navigators to engage, screen, and refer high-risk patients to home visiting services, which include partnerships with Title V PICHC programs. This year’s state budget included an increase in funding for RPCs, which will support a 38% increase in funding over the prior year, building on previously described work to enhance telehealth capacity across birthing hospitals [WMH, PIH]. 

 

• Expanding service capacity of SBHCs to meet the existing and emerging needs of children and youth. The Division recently received a new five-year HRSA grant to expand access to pediatric mental health care. The goal for NYS’s grant is to connect SBHCs with OMH’s Project TEACH, which is a statewide training, education, and consultation initiative that works to strengthen and support primary care providers’ ability to diagnose and manage mild-to-moderate mental health concerns. A Request for Applications (RFA) was completed this year (expected release later in 2022) to support the establishment of dental homes in SBHCs, which in turn will increase capacity for providing dental services and enhancing oral health promotion and prevention activities. [CH, AH].  

 

 

Title V Partnerships & Collaborations

 

Partnership and collaboration are core to the work of our Title V Program. Collaboration occurs at every level – across organizational units and programs within the Title V Program, with other MCH-serving state programs within NYSDOH and other state agencies, and with a wide array of stakeholders. We have selected one example for each domain to highlight as part of this year’s NA update:

 

• To strengthen collaboration across all DFH youth-serving programs, meetings to learn about the backgrounds and current work of staff in other programs were established. , In August 2021, staff from numerous youth-serving programs (CAPP, PREP, SRAE, SBHC, Family Planning, CYSHCN, and others) were invited to a series of ACT CCA-hosted webinars on youth mental health.
• Within the Title V Program, the Bureau of Child Health (DFH) is partnering with the Asthma Guidance Team (Division of Chronic Disease Prevention) and the American Lung Association to enhance SBHC engagement in an Asthma Self-Management Education Pilot project. [CH].
• Building on the longstanding partnership between our state Title V and Medicaid programs to support the development and implementation of Medicaid Children’s Health Homes (CHH), this year Title V staff joined a multidisciplinary NYS Medicaid Redesign Team focused on improving outcomes for people with Sickle Cell Disease (SCD). Based on the team’s recommendations, NYS pursued adding SCD as a single qualifying condition for enrollment in CHH, which would strengthen care coordination to promote effective treatment, reduce symptoms, prolong life, and improve well-being for children, youth, and young adults with SCD. [CYSHCN].
• Our Home Visiting Team includes staff from MICHC/PICHC (Community Health Staff from MICHC/PICHC) and MIECHV funded programs continued a collaboration with the WIC Program (NYSDOH Division of Nutrition) and Healthy Families NY (NYS Office of Children and Family Services) to improve referrals to home visiting programs from WIC local agencies. [PIH].
• Title V staff are collaborating with the NYS Office of Addiction Services and Supports (OASAS) to support a new OASAS overdose prevention grant that includes pregnant people, new parents, and survivors of sexual and domestic violence among its priority populations. In addition, we are engaging OASAS in meetings with Title V-funded programs/partners to strengthen those relationships [WMH]

 

 

Operationalizing Needs Assessment Activities & Findings

 

Our Title V Program continues multiple approaches to operationalize NA activities and findings. As demonstrated above, most of the methods we use to gather input and information are operationalized within routine program activities. These include:

• Reviewing existing population health surveys and surveillance systems annually.
• Developing, maintaining, and improving data management systems for local Title V-funded programs.
• Integrating requirements for routine data reporting in grant contracts for all Title V-funded programs.
• Integrating requirements for community engagement, including community listening forums, in our procurement processes.
• Supporting statewide and regional centers that assess needs of priority populations to inform ongoing statewide and program-specific T&TA activities.
• Applying findings from all these assessment activities to the design and ongoing improvement of MCH programs and initiatives.

 

Please refer to Ongoing NA Activities above for further detail on these approaches.

 

Organizational & Leadership Changes

 

Our Title V Program had several key leadership-level staffing changes this year:

• Kirsten Siegenthaler, PhD, was promoted to Director of the Division of Family Health and Title V Director, having served as the Associate Director for three years.
• Emily DeLorenzo, PhD, joined as Associate Director of the Division of Family Health, which was vacant following Dr. Siegenthaler’ s promotion to Division and Title V Director.
• Christopher Kus, MD, MPH, Associate Medical Director for the Division/Title V Program, retired from NYSDOH.
• Ann-Margret Foley, MSW, was appointed Director of the Bureau of Women, Infant, and Adolescent Health (BWIAH).
• Rae Ann Augliera, MS, was appointed Associate Director of BWIAH, following the retirement of Michael Acosta.
• Raymond Pierce was appointed Director of the Bureau of Early Intervention, following the retirement of Connie Donohue.
• Claire Rudolph was appointed Assistant Director of the Bureau of Child Health.

 

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).

 

 

III.C.1.a Needs Assessment Process Updates

 

NY’s Title program combines structured needs assessment (NA) activities and ongoing communication with providers, families, and other partners to assess the needs of MCH populations and systems, as detailed below.

 

Statewide MCH Data Collection & Analysis

 

We review statewide data to assess status, trends, and disparities for key MCH indicators, and share results to inform program strategies and allocation of funds. 

 

• Title V staff review national survey data including PRAMS, BRFSS, NSCH, and YRBSS annually. [All]
• In collaboration with the NYSDOH Office of Public Health Practice, DFH maintains a MCH data dashboard, updated in April 2024 [All]
• DFH collaborated with the NYSDOH Division of Chronic Disease Prevention to add Family Planning and Sexual Violence measures to BRFSS. [WMH]
• Title V leads a comprehensive maternal mortality and morbidity review process with the NYS Maternal Mortality Review Board (MMRB). This period we released a statewide report on pregnancy-associated deaths for 2018-20. A report on Severe Maternal Morbidity (SMM) is pending release. [WMH]
• A new report Infant Mortality in New York State, 2016-2019 was published in June 2023. [PIH]
• Title V funded an over-sample of National Survey of Children’s Health (NSCH) for NYS for Black, Hispanic, and CYSHCN. [CH, AH, CYSHCN]
• The Lead Poisoning Prevention Program manages a data system of children’s blood lead levels and produces data reports on lead testing rates and lead poisoning.
• The New York State Profile of CYSHCN is updated annually and shared with partners. [CYSHCN].

 

Input from Local MCH Programs & Service Providers

 

Data collection and reporting are required for all Title V-funded programs. Local providers are required to engage with communities to assess community and client needs, which informs local and state work.

 

• All Title V-funded local programs submit quarterly reports on program activities, capacity, outcomes, and training and technical assistance (T&TA) needs.[All]
• Title V program staff convene quarterly calls with grantees to share information, review performance data, and discuss needs, challenges, and solutions. [All]
• DFH contracts with statewide and regional centers that provide additional information from local family planning, maternal/perinatal and infant health, adolescent health, and CYSHCN programs [WMH, PIH, AH, CYSHCN]
• The state’s Growing up Health Hotline (GUHH) maintains data on information and resource needs based on calls received [WMH, PIH, CH]

• A new web-based data system for the SBHC and School-based Dental programs was rolled out in Fall 2023, with expanded race, ethnicity, and gender identity fields and enhanced data reporting functionality. [CH, AH, CYSHCN]
• The ACT Center for Community Action (CCA) communicates with local adolescent health (AH) grantees about their T&TA needs. AH programs conduct entry and exit surveys to monitor attendance, reach, and dosage of their curricula through the CCA’s system. [AH, CYSHCN]

• A web-based data system for local health department (LHD) CYSHCN programs launched in 2021 is now fully operational. LHD staff can review their own data in real time. Title V staff produce an annual report and are developing a new CYSHCN data dashboard. [CYSHCN]
• CYSHCN staff review Medicaid data to monitor enrollment in Health Home for Children. [CYSHCN]
• In 2023 CYSHCN staff collaborated with the NYS Association of County Officials (NYSACHO) to convene a statewide meeting and follow-up regional calls with local CSYCHN and Early Intervention programs.[CYSHCN]

 

Quality Improvement & Evaluation Initiatives

 

Title V staff lead a range of special projects to learn about specific service and system needs, capacity, and effectiveness.

 

• A Fall 2023 survey evaluated referrals between birthing hospitals and home visiting programs. Development of a statewide home visiting referral tracking tool is paused due to staffing vacancies. [WMH, PIH]
• NYSPQC led learning collaboratives with birthing hospitals on opioid use disorder and equity in birthing hospital and NICU care.  These projects include discharge surveys to better understand birthing and NICU care experiences. [WMH, PIH]
• The Family Planning Program (FPP) surveyed local providers to assess partnerships with Syringe Exchange Programs (SEPS), which informed formation of regional partnerships. [WMH]
• A new QI project focused on language capacity in home visiting programs is underway. Title V staff also participated a national QI project on staff recruitment and retention. [WMH, PIH]

• The Newborn Screening Program continues a CQI initiative to improve lab collection and processing times, blood spot specimen quality, false positive screening results, timeliness in screening, and data completeness. Monthly reports to hospitals are used to prioritize targeted virtual TA site visits. Based on this work, the program has expanded its training to  hospital IT staff, established a centralized hospital information portal, and offered a series of webinar trainings. [PIH, CYSCHCN]
• The Early Hearing Detection and Intervention (EHDI) program amended state regulations to improve newborn hearing screening and follow-up through a new two-tier inpatient newborn hearing screening protocol and companion standard for NICUs. [PIH, CYSHCN]
• DFH contracts with the Island Peer Review Organization (IPRO) to monitor FPP, Regional Perinatal Centers, SBHCs, and School-based Dental programs. In Fall 2023 Title V staff worked with IPRO to update monitoring tools, sampling methods, and review visits in response to provider feedback. [All]
• The CYSHCN Director is serving on the advisory group for a new study led by Cornell University and Bassett Health Care to compare health outcomes among students in district with and without SBHCs. [CH, AH, CYSHCN]
• A project to assess models and best practices for SBHCs is underway with support from an SPH student intern and FAPH physician fellow. [CH, AH, CYSHCN]
• Title V staff hosted and mentored two MPH interns to assess health equity in LHD CSYCHN programs and Sickle Cell program capacity statewide. [CYSHCN]

 

Advisory Groups

 

Title V staff convene and participate in many formal bodies that facilitate input from state and local partners including families and youth. 

 

• DFH convenes the NYS Title V Advisory Council. With representation from LHDs, CBOs, parent groups, and advocates, the council meets three times each year on a range of MCH issues and initiatives [All]

• A new FPP Clinical Advisory Group will begin in 2024. [WMH, AH]
• DFH is working to establish a Midwifery Workgroup to better understand the needs, challenges, and opportunities for further engagement and partnership with midwives. [WMH]
• As part of our new HRSA Maternal Health Innovation grant, DFH is establishing a Maternal Health Task Force to develop a strategic plan for improving maternal and pregnancy outcomes. [WMH]
• Title V staff are working to establish a statewide Home Visiting Parent Advisory Committee. Work on a formal procurement was paused due to staffing vacancies. [WMH, PIH]
• Perinatal Health and FPP staff are participating in a Congenital Syphilis Elimination Strategic Plan Workgroup led by the NYSDOH AIDS Institute. [WMH, PIH]
• The EHDI program convenes a state Advisory Group that meets quarterly with state partners including family members to provide guidance and feedback on relevant initiatives, including support for families of Deaf or Hard of Hearing children. [PIH, CYSHCN]
• Title V staff serve on the state Early Childhood Advisory Council (ECAC). Comprised of experts in education, health care, child welfare, and mental health from state agencies, CBOs, higher education, and others, the ECAC advises the Governor on early childhood issues. [PIH, CH, CYSHCN|
• Title V staff participate in an inter-agency workgroup on Adverse Childhood Experiences. [CH, AH, CYSHCN]
• NYSDOH convenes and staffs the Governor’s NYS Advisory Council on Lead Poisoning Prevention to provide input on the prevention and elimination of childhood lead poisoning. [CH, CYSHCN]
• Title V staff serve on the Advisory Committee for the NYS Governor’s Youth Council, a youth-run council  comprised of youth from all 62 counties to facilitate ongoing communication with policymakers. [AH]
• In collaboration with Families Together in NYS-Youth Power, DFH is establishing a new Youth Advisory Group (YAG) to incorporate authentic youth voices and lived experiences into our program and policy work. Beginning in 2024, diverse youth from across the state will meet directly with Title V program staff to provide input and feedback on our youth-serving programs. [AH, CYSHCN]
• Title V staff participate in several interagency groups to support CYSHCN, including the NYS Council on Developmental Disabilities, the Deputy Commissioners’ Cross-Systems Work Group, a new Pediatric & Obstetric Emergency Protocol Workgroup, and a new Pediatric Policy and Programs Cross-Agency Group. [CYSHCN]

 

Input from Families, Youth, & Community Members

 

Direct input from priority populations, especially families and youth, is a major emphasis for NY’s Title V Program. Examples of how we integrate this across our programs include:

 

• In collaboration with the NYS Office of Health Insurance Programs, Title V staff are enhancing engagement with doula providers to inform expanded access to doula services, including new state Medicaid coverage for doula services effective April 2024. [WMH, PIH]
• With support from the ERASE Maternal Mortality grant, Title V staff are working with PICHC contractors and CBOs to host six listening sessions in Spring 2024 related to birthing experiences of communities disproportionately affected by maternal morbidity and mortality. [WMH, PIH].
• Under the same ERASE grant, in May 2024 DFH engaged IPRO to conduct key informant interviews with family members who have experienced a pregnancy-related death of a loved one, and to incorporate that information in the case summaries reviewed by the MMRB. [WMH]
• In conjunction with Hands & Voices NY, the EHDI program gathers input and feedback from parents through a survey administered in conjunction with family engagement and support events across the state. [PIH, CYSHCN]
• In addition to the Governor’s Youth Council and new Youth Advisory Group mentioned above, local AH grantees engage youth in their programming and as paid advocates. [AH]

• DFH contracts with three Regional Support Centers (RSCs), which are required to employ parents of CYSYCN as Family Liaisons.  The RSCs work with all LHDs to develop and implement tailored improvement plans to meet their community engagement goals. LHD CYSHCN programs are required to engage CYSHCN families in work groups and other local planning activities and their input informs local and statewide T&TA. [CYSHCN]
• A parent representative from Parent to Parent of NYS serves on the Title V Advisory Council. The OCFS-led Commissioner’s Cross-Systems Work Group has begun holding periodic meetings with families. [CH, AH, CYSHCN]

 

 

III.C.1.b  FINDINGS

 

III.C.1.b.i MCH Population Health and Wellbeing

 

Women's and Maternal Health. Maternal mortality improved steadily from 2018-2020, but provisional data for 2021 show a potential increase.  The recently published statewide report confirmed that most cases of maternal mortality deaths are preventable. Moreover, stark racial disparities persist, and rural residents report poorer access to women’s healthcare services.   

The percentage of women with annual preventive visits continues to decline post COVID.  However, the percentages of PICHC clients who have developed birth plans and of FPP clients with documented medical exams both increased, though the latter has not recovered from COVID losses. An increasing number of individuals seeking services indicate a primary language other than English.

 

Hemorrhage, embolism, and mental health conditions remain the leading causes of maternal mortality, and PICHC and MIECHV providers are requesting more training on suicide prevention, emergency response, and self-care. New York State has also experienced a significant increase in Severe Maternal Mortality (SMM) over the last 15 years that has disproportionately impacted racial and ethnic minorities.

 

Perinatal Health. Perinatal health outcomes have remained largely stable over the five-year cycle. The percentage of VLBW infants born in a level 3+ NICU has remained consistently high. The percentage of Newborn Bloodspot screenings received within 48 hours of collection has also started to recover from its COVID-19 pandemic related decrease. Infant mortality rates continue to improve overall, but racial disparities persist, with Black non-Hispanic children having nearly twice the rate of white non-Hispanic infants, driven by disparities in housing, employment, income, transportation, food security, stress, quality of medical care, social supports, insurance, and other factors.

 

Through the Growing Up Healthy Hotline (GUHH), individuals and families have requested information about ta multitude of services including Medicaid, the Food and Nutrition Program (FAN), and the Extended Syringe Exchange Program (ESAP).  

 

Child Health. Outcome measures for children’s health continue to recover from pandemic losses.  SBHC providers report increased concerns about health care provider shortages, and the percentage of children enrolled in SBHCs who received anticipatory guidance on physical activity and nutrition has continued its negative trend.

 

Lifetime prevalence of asthma among children has decreased over the last year, but asthma-related ED visit rates for children have increased. The percentage of children who are obese continues to increase following a trend of fewer parents reporting that their children get 60 minutes of physical activity daily. Despite fewer children getting a preventive dental visit, the prevalence of tooth decay or cavities among children improved.

 

Adolescent Health. Indicators of adolescent health continue to reflect pandemic-related losses. Annual adolescent preventive health visit rates and HPV vaccination rates decreased throughout and after the pandemic. However, the percentage of youth programs that provide training on adult preparatory topics remaining consistently high, and the percentage of youth-serving programs that engage youth in program planning and implementation continues to increase to pre-pandemic levels.   

 

Adolescent pregnancy rates continue to decrease, although providers have encountered emerging resistance to expanding sexual education topics in some school districts. Providers continue to report mental health as an area needing more resources to meet current demand. Despite this, suicide among adolescents continues to decrease. The percentage of adolescents who are obese has remained consistent. However, fewer adolescents are reported to be exercising 60 minutes or more daily.

  

CYSHCN. New York State families of CYSHCN continue to navigate recovery from the pandemic. The percentage of children identified as having special health care needs decreased over the last year, which we will monitor as a potential reflection of decreased screening. CYSHCN reported experiencing a higher rate of adverse childhood experiences. The percentage of NYS adolescents with special health care needs with a transition plan to adult care services has recovered from COVID and continues to increase. The percent of youth with sickle cell disease (SCD) served through our funded SCD program with transition plans has increased.

 

With the infusion of increased funding, LHDs are increasing their focus on CYSHCN and their families including through the promotion of accessible community spaces. Additionally, LHDs report that their ability to provide services continues to be limited by their inability to recruit and retain therapy providers.

 

III.C.1.b.ii  Title V Program Capacity

 

III.C.1.b.ii.a. Organizational Structure

There have been no major changes to the Title V Program/ Division of Family Health organizational structure this year.

 

III.C.1.b.ii.b Title V Agency Capacity

As we continue the long recovery process from the COVID-19 pandemic, several changes this period positively affect state Title V capacity to provide and assure services for MCH populations:

• DFH contracts with statewide and regional centers that augment the agency’s capacity to monitor, support, and learn from the work of local funded programs. [WMH, PIH, AH, CYSHCN].  Following mutual termination of a contract with the former PICHC T&TA provider, DFH requested approval to establish a new contract to ensure continuity of support, anticipated to start 7/1/24. During this transition period, DFH staff have engaged other subject matter experts to provide training on suicide prevention and promoted other resources and training opportunities. [WMH, PIH].
• As noted, a new monitoring contract with IPRO for selected programs began Fall 2023. [All]
• DFH was awarded a new HRSA State Maternal Health Innovation grant (2024-28, $2M annually), to conduct a maternal health-related needs assessment, establish a statewide maternal health taskforce, develop a preliminary strategic plan, conduct data system enhancements and innovations, and plan and implement innovative approaches to addressing maternal health issues. The innovation projects include a universal postpartum virtual home visiting model to provide birthing families with virtual visits and referrals for support services. [WMH, PIH]
• Through our collaboration with the Syringe Exchange Program, several FPPs are engaging in partnerships to support and provide referrals for individuals who use drugs. [WMH]
• Our recent assessment of FPP grantee reports, described in last year’s NA Update, identified key themes related to staff retention and engagement, client experience, and reaching underserved populations.  These inform QI/QA and T&TA for the program. [WMH, AH]
• New guidance for home visiting programs on best practices for referrals is in development, and information from the recent assessment of referral relationships with birthing hospitals has been shared with providers. Additional feedback from home visiting projects identified a common challenge in supporting families with a primary language other than English. We are exploring resources to help programs better support these families. [WMH, PIH]
• Resources on opioid use and neonatal abstinence syndrome have been developed through the NYSPQC learning collaboratives, including tools and resources for provider and patient education. Toolkits from the birth and NICU equity projects are in development. [WMH, PIH]
• Amendments to state regulations effective April 2024 have resulted in enhanced standards for newborn hearing screening and follow-up in the state. [PIH, CYSHCN].
• PICHC and MIECHV programs requested support for training staff on suicide prevention, emergency response, and self-care. From this, programs engaged with the NYS Office of Mental Health (OMH) to provide Links to Hope training planned for 2024. [WMH, PIH]
• 33 of our 37 FPPs participated in a project to enhance delivery of telehealth for sexual and reproductive health appointments, which we expect will increase telehealth visits and improve access to contraceptive and STI services, counseling, and preventive care. [WMH, AH]
• A procurement for new School-Based Dental Home grants was completed with new contracts starting July 2023, replacing the former school-based dental sealant program. The enacted state budget for 2024-25 includes additional funding for school-based dental services. [CH]
• The Pediatric Mental Health Care Access (PMHCA) grant from HRSA (2021-2026) is increasing youth access to mental health services by connecting SBHCs to children’s mental health professionals through a partnership with the NYS Office of Mental Health’s Project TEACH , which provides clinical consultation, telehealth mental health services, T&TA for SBHC. A key component is engaging youth and their families together in the provision of mental health telehealth services. [CH, AH, CYSHCN]
• New state legislation, adopted in 2023 with anticipated implementation in 2025, will establish a statewide Rental Registry program to require proactive lead inspections in rental units in multifamily dwellings built before 1980 in high risk areas of the state.  [CH, CYSHCN]

• Several AH programs have reported resistance from school districts on delivering sexual health education, as part of wave of rising conservative advocacy with school boards. We are supporting providers to engage in relationship-building and education with school districts. [AH]

• As an outgrowth of our participation in a NYSDOH ACES workgroup, we continue to integrate work on trauma-informed practice and ACES across programs, trainings, and resources for local providers. [CH, AH, CYSHCN]
• There have been a series of CYSHCN program expansions. In 2022, we doubled grant funding for CYSHCN LHD programs, with a new requirement for minimum LHD CYSHCN staffing levels. In 2023 through a competitive procurement we increased the number of DOH-funded Sickle Cell programs from three to five, along with an increase in annual funding per program. Effective October 2024, a new statewide Center of Excellence for CYSHCN will replace the current three regional centers. This year the program also will conduct a competitive procurement to award a new state appropriation of $3 million for local CYSHCN work, with projects to begin in 2025. [CYSHCN]
• New state legislation signed by the Governor in December 2023 requires the state Health Equity Council to consider and issue recommendations to NYSDOH on promoting screening, education, and supportive services on sickle cell disease. [CYSHCN]
• The Blueprint for Change provides a framework to guide current and future work in support of CYSHCN and their families. All CYSHCN staff read the full Blueprint and each staff led a staff discussion of one article, including assessing how current work aligns with the Blueprint recommendations.  We are developing a crosswalk between the Blueprint and current and planned CYSHCN domain action plan activities. [CYSHCN].

 

 

III.C.1.b.ii.c Workforce Capacity and Workforce Development

 

The MCH workforce at both state and local levels has been heavily impacted by the COVID-19 pandemic, retirements, inflation, stagnant wages, and shortages in specific professions (e.g., skilled nurses).  Our Title V program is engaged in many approaches and initiatives to strengthen the capacity of the existing MCH workforce while continuing to invest in training the MCH workforce of tomorrow. We accomplish this through recruitment strategies, staff training and professional development, partnering with fellowship programs, and our innovative academic-practice partnership with the University at Albany School of Public Health’s MCH Program. Please see section III.E.2.b.i. MCH Workforce Development for more detail on this critical work.

 

III.C.1.b.ii.d. State Systems Development Initiative (SSDI)

 

Please see Systems Development Initiative (SSDI) Update.

 

 

III.C.1.b.ii.e. Other data capacity

 

In addition to the SSDI-specific updates provided in Section III.E.2.b.iii.b., we have strengthened our data capacity in other areas. Examples include:

• The new MHI grant funding, in conjunction with our NYSPQC AIM grant, will support capacity to conduct new data analyses, including deep dives in SMM, data matches between PRAMS and other administrative datasets, and deeper analysis of low-risk cesarean births. [WMH, PIH]
• The addition of CDC Family Planning and NYS-defined Sexual Violence measures to the BRFSS will provide additional insight to statewide health status and trends related to sexual health. [WMH]
• The regulatory changes for newborn hearing screening have improved documentation in the state EHDI Information System, which will help refine activities to promote timely screening and follow-up. [PIH, CYSHCN]
• The over-sample of National Survey of Children’s Health for NYS will provide more robust information on a wide range of health & well-being indicators and potential disparities for NY’s children and families, including CYSHCN.  Title V data staff are traveling to CDC for additional training to facilitate analysis of the data. [CH, AH, CYSHCN]
• New web-based data systems for SBHC, SB Dental, and CYSHCN Programs will greatly increase capacity for data analysis and reporting to support statewide and local program activities. [CH, AH, CYSHCN].
• New state legislation requiring the establishment of a statewide Rental Registry program to require proactive lead inspections in rental units in multifamily dwellings built before 1980 in high risk areas of the state will enhance both data capacity and childhood lead poisoning prevention efforts.  [CH, CYSHCN]

 

 

III.C.1.b.iii Title V Program Partnerships, Collaboration, and Coordination

 

Partnership and collaboration are core to our Title V work across all five domains and at every organizational level. We have selected a few examples to highlight the wide range of partnerships and collaborations our Title V program engaged in this year:

 

• The new federal Maternal Health Innovation (MHI) grant has led to new partnerships, with more expected as the project matures. NY Title V staff are engaging with other funded MHI programs to learn best practices from other states and have identified potential partner resources related to health equity. [WMH]
• Title V staff continue several key collaborations with the NYSDOH Division of Chronic Disease Prevention to promote children’s health. Several additional SBHCs have joined the American Lung Association (ALA) asthma self-management program, DFH staff are expanding collaboration with the Bureau of Tobacco Control to promote vaping prevention initiatives and engage SBHCs in that area, and a previous effort to connect SBHCs with DOH-funded Creating Healthy Schools and Communities (CHSC) grantees in their districts has been revitalized. As one example of the latter collaboration, SBHC and CHSC grantees in Syracuse are working together with a local food pantry to expand access to healthy meals and food items for students and families. [CH, AH, CYSCHN]
• SBHC staff are partnering with the NYS Office of Mental Health (OMH) to update a crosswalk between OMH-approved Article 31 school-based mental health clinics and DOH-approved Article 28 SBHCs. DFH also partners with the OMH-funded Project TEACH to facilitate mental health consultation and referral support for SBHCs.  [CH, AH, CYSHCN]
• Title V Adolescent Health staff have joined a NYSDOH Alcohol Surveillance Workgroup and an interagency Runaway Intervention Workgroup convened by the Division of Criminal Justice Services. [AH]
• The Lead Poisoning Prevention’s partnership with the National Center for Healthy Housing provides access to a wide range of evaluation and technical assistance tools that are shared with local health departments.  The program has also recently expanded its partnership with the Refugee Health Program, sharing data to better monitor health outcomes among refugee populations. [CH, CYSHCN]
• Title V CYSHCN staff continue to deepen and expand their collaboration with the NYS Office of Children and Family Services to support the OCFS-led HEARS Family Line, which provides families with resources and referrals to a variety of services and resources including food, clothing, housing, medical and behavioral health care services, parenting education, and child care, with messages available in 12 languages.  As an outcome of the Deputy Commissioners Cross-Systems meetings in which CYSHCN staff participate, OCFS has expanded HEARS this year, and shares summary data on call volume and themes with us. [CYSHCN].

 

 

III.C.1.b.iv. Family and Community Partnerships

 

The preceding sections highlight many examples of how our Title V program partners with families and communities to support MCH. Please refer to the sub-section Input from Families, Youth and Community Members within Section III.C.1.a Needs Assessment Process Updates.

 

We would like to highlight one example of a recent family and community partnership from the CYSHYN program. As noted, every local CYSHCN program develops and implements a family engagement plan with support from the Regional Support Centers. This year the Erie County CYSHCN program planned and hosted a “Spring into CYSHCN” Family Resource Fair at the Explore & More Children’s Museum in Buffalo, NY. The museum space is customized with visual, social, communicative, sensory, and behavioral supports for families with different needs, including a universal changing table, elevators, wheelchair ramps, and sensory friendly rooms.

 

For this event, the Erie County CYSHCN program provided free admission to the museum, transportation assistance, and a nutritious meal for families. The Erie County Project Coordinator, Evanna Ramos, assembled a resource fair of community organizations based on needs identified through conversations with local families. Twenty-five community and government organizations engaged with attendees and enrolled and connected families with local services and programs. Featured vendors included Erie County Social Services, Parent Network of Western New York (WNY), Help Me Grow WNY, Mental Health Advocates of WNY, Lead716, and the Neurodiversity Network of WNY.

 

III.C.1.c. Identifying Priority Needs and Linking to Performance Measures

 

We are incorporating measures related to postpartum care and medical home consistent with the new universal National Performance Measures. look ahead to our next five-year Needs Assessment we will focus our attention to these measures and appropriate strategies and activities.