The New York State Department of Health (NYSDOH) facilitated an extensive multi-pronged process to identify and assess the Maternal Child Health (MCH) needs, strengths, capacity, and partnerships that will inform its Title V work for the next five years and beyond. This Needs Assessment (NA) serves as the basis for the state’s MCH priorities and State Action Plan that follow.

 

The NA was led by a Title V Leadership Team, chaired by the Title V Director and comprised of key organizational leaders from the Division of Family Health (DFH), with coordination and technical assistance from the University at Albany’s HRSA-funded MCH Catalyst Program. A logic model (Appendix 1) was developed to guide the process. Guiding principles for the NA included family and community engagement, equity and inclusion, data-driven evidence-based decisions, alignment with the NYS Prevention Agenda and other key frameworks and investments, and a commitment to maintaining and building on key MCH infrastructure and capacity. The Title V NA was done in close coordination with the NYS Maternal, Infant, and Early Childhood Home Visiting (MIECHV) NA, which was also led by DFH.

 

A rich array of quantitative and qualitative information was gathered to support the NA, and stakeholders were engaged throughout the process. Key information sources and methods for the NA include:

 

Population Health Data–In collaboration with the Bronfenbrenner Center for Translational Research at Cornell University, quantitative data encompassing more than 100 key indicators spanning population domains were compiled and analyzed for current status, trends, and disparities. Measures reflect Title V National Performance Measures (NPMs) and National Outcome Measures (NOMs) and input from MCH partners on other topics of importance for NYS. Data were from Vital Statistics, hospital discharge data, population surveys (e.g., Pregnancy Risk Assessment Monitoring System, National Survey of Children’s Health, Behavioral Risk Factor Surveillance System, Youth Risk Behavior Surveillance System), and other population health data sources.

 

Community Listening Forums (forums)–In collaboration with the NYS MIECHV program and a broad network of community-based partner organizations, forums were hosted across the state with families and community members to facilitate open discussion about individual, family, and community health and services. A total of 37 forums were held in 18 NYS counties and in the Akwesasne Territory of the St. Regis Mohawk Tribe, with over 700 community members. Individual forums focused on specific populations including expectant parents and parents of young children, done in partnership with the MIECHV program (n=10 forums and 230 parent participants); other adult men and women (n=15 forums and 292 participants, primarily parents and grandparents); adolescents (n=9 forums and 154 teen and young adult participants); and families of Children and Youth with Special Health Care Needs (CYSHCNs) (n=3 forums and 37 family participants). Forums were conducted and notes of the discussions were recorded by community partners. Participants were racially diverse: 32% identified as Black or African American, 28% as White, 19% as Asian or other race(s), and 3% as American Indian. Approximately 25% of participants identified as Hispanic, and participants reported primary languages of English, Spanish, Chinese, and Haitian/Creole. DFH staff analyzed forum documentation using qualitative analysis methods.

 

Public and Provider Surveys–Web-based surveys designed for the public and service providers, respectively, were posted on the NYSDOH website and social media and distributed widely through a broad network of over 20 organizational partner groups. Through a mix of closed- and open-ended questions, providers were asked the following: what’s working and what can be strengthened in their communities; social determinants, root causes, disparities, and health outcomes; community partnerships; population engagement strategies; and a range of potential MCH priorities. Consumer respondents were asked about factors that affect health in their communities, available and needed services, and barriers to and satisfaction with existing services. Over 770 providers and over 320 individual consumers responded, representing all regions of the state. While the provider respondents reflected the diverse array of MCH-serving organizations in NYS, family/consumer respondents were less diverse, with 80% of respondents identifying as female, 73% as white, and over 60% with private health insurance, suggesting the survey did not reach or engage a sufficiently diverse demographic. Thus, a sub-analysis limited to respondents with Medicaid or no insurance coverage (n=45) was conducted.

 

Stakeholder Meetings–Information on the Title V program and NA was included in meetings with stakeholder groups on an ongoing basis, with partner input routinely shared and integrated in assessment of key issues and recommendations. DFH convened a special meeting in June 2019 with representatives of community-based programs and their community member partners, which directly informed the content and process for the community listening forums. The state’s Title V Advisory Council provided key input and feedback throughout the NA process, with meetings convened in September 2019 and February and June 2020.

 

MCH Program Inventory–In order to assess current MCH public health infrastructure and capacity, a comprehensive inventory tool was developed to gather key information about MCH-serving programs across NYSDOH. Similar information was gathered directly from MCH-serving programs in other state agencies. A total of 28 programs completed the inventory.

 

Additional detail about these sources is provided in Appendix 2.

 

In addition, companion NYS NAs were reviewed to inform the Title V NA, including Head Start, Child Abuse Prevention Treatment Act (CAPTA), Birth to 5 Preschool Development, and the NYS Prevention Agenda, alongside recent DFH statewide maternal health listening forums, a care mapping exercise with parents of CYSHCN, and adolescent focus groups conducted by partners at Cornell University through the ACT for Youth initiative.

 

Of note, most information to support the NA was collected prior to the arrival of the COVID-19 public health emergency in NYS. Updates to reflect needs related to COVID-19 will be included in the NA update in next year’s application.

 

All NA data were analyzed and summarized in several formats. The initial plan included a series of stakeholder meetings to present and discuss findings and resulting priorities for the state action plan. Unfortunately, this plan was significantly disrupted by COVID-19. A virtual meeting with the NYS Title V Advisory Council was held on June 17; Council members voiced support for the NA and resulting priorities and performance measures.  Additional virtual and/or in-person meetings with stakeholders will resume when feasible to continue collaborative processes for refining and acting on priorities.

 

From the Needs Assessment (NA) sources and methods outlined above, ten key cross-cutting themes emerged. These themes reflect the voices of community listening forum (forum) participants across all population groups and geographic areas, reinforced by survey responses from providers and community members. The themes cut across the five Title V domains and provide context for relevant findings reported in the domain-specific summaries below. These themes emerged organically from open-ended group discussions and survey questions in community members’ own voices and were not prompted by topic-specific questions.

 

Theme 1: Lack of awareness of resources and services in the community. This was the most frequently reported need, raised in three-quarters of the community forums. Participants noted that they rely on “word of mouth” to know about services in their communities or that you must encounter a problem (e.g., have a preterm infant or enter a domestic violence shelter) to enter the system and be connected to needed services. Their recommendations include enhanced community outreach at locations such as churches, supermarkets, and groups; printed and virtual materials and resources; and increased referrals, coordination, and navigation support from service providers. Specific services frequently mentioned for which increased awareness is needed include mental health, substance use, and family planning services.

 

 “Just tonight, everyone is talking about different programs that a lot of us didn't know about. Education, knowing more about what's out there and the people who are providing these services, getting the info out there.”

 

“If it was not for finding myself in a shelter due to a domestic violence situation, I would have not known about resources in my community and I do not feel like that is a good thing.”

 

Theme 2: Transportation barriers. This was the second most commonly cited issue, voiced by participants in two-thirds of forums. Participants cited lack of public transportation options, cost, reliability, long wait times, and accessibility as key barriers. They described the impact of transportation barriers on keeping and arriving on time for appointments, reliably getting to jobs, running errands, and participating in community activities. They voiced recommendations for low/ no cost transportation to non-medical services (such as Supplemental Nutrition Programs for Women, Infants, and Children (WIC), Departments of Social Services (DSS), and support groups like Alcoholics Anonymous), more short-notice and emergency transportation options, more informational resources about available transportation, and more family-friendly transportation accessible to strollers, wheelchairs, and families with multiple children. Families described concerns about pedestrian safety especially for children and called for improvements to make communities more walkable.

 

 "I had to walk through town with my groceries in a cart and walk the cart back. It was embarrassing."

 

“We have the […] county bus that goes around, but there's not a lot of them. There are big gaps in the day when you either have to… go early and spend your whole day waiting for your appointment. So you waste a lot of your day that you [could] have worked or done something else.”

 

Theme 3: Availability and accessibility of services and amenities in the community. Within this common theme, participants identified many different specific resources needed in their communities. Most notably, each of the following were identified by two-thirds of the community forums as needs:

• resources for affordable, fresh, and healthy foods, especially farmer’s markets and food pantries;
• local health care providers and specialists, particularly specialists for children and youth with special health care needs (CYSHCN), mental health, and substance use treatment services. Some communities also voiced a need for more dental providers, local urgent care clinics, and full-service hospitals;
• activities or centers with age-appropriate activities for children and families, including young children, teens, and differently-abled children and adults.

 

Participants in many forums also voiced the need for more accessible and safe places for physical activity and exercise, such as fitness centers and more walkable areas.

Respondents cited barriers to using community services including the cost of programs; distance/ travel time; inconvenient locations and hours; challenges with eligibility, available “slots” or long waiting lists; and fears of seeking services due to stigma about undocumented status or mental health issues. They described bad experiences and bad reputations of some programs and staff as factors that discouraged use of available services. These challenges were exacerbated by transportation issues, forcing residents to travel outside the community for services or go without.

 

"There needs to be more after school programs for children and things for them to do so they can use their time. Rather than becoming invested in drugs because they have all this time."

 

"If we had more mental health programs/options that would help our community to not be so depressed."

 

Theme 4: Poverty and issues of the working poor. In one-third of the community forums, participants described challenges specific to earning too much to qualify for benefits but not enough to get by voicing a sentiment that “the system holds you down” with no opportunity to save and get ahead. Individuals described challenges qualifying for and obtaining services, citing the burdensome nature of documentation and application processes, inconsistent information, and experiences of feeling judged and disrespected by social service systems and staff. Some noted that benefits they did receive were insufficient to meet their family’s needs. They described being “suddenly dropped” from services if their income increases or if two adults are working, with gaps in coverage. They suggested providing access to copiers and fax machines to assist people with applications, and instituting processes to “wean off” of benefits when eligibility changes.

 

Within this theme, respondents also described the desire for financial stability and opportunities to grow financially for their family and children. They cited the need for more stable, quality job opportunities, with livable wages and benefits. Participants asked for more assistance to find jobs, develop career skills, continue education, and obtain free or affordable higher education. Both youth and adults called for more education in schools on financial literacy skills related to budgeting, taxes, and credit. The high cost of basic needs including food, health insurance and health care, housing, childcare, clothing, diapers, and others was frequently noted as a barrier to saving and getting ahead financially, and organizations that assist with meeting those basic needs were often discussed as an important asset.

 

"If you are in poverty, you are more likely to spend more money because there is this whole thing of like you pay for something to get it immediately rather than saving up to get something that lasts, so you end up buying something that will break really quick. So you end up spending more money. So really, being poor is expensive."

 

"If you are making a ‘livable wage’ you can't qualify for certain services. The system is made for us to fail. If you do improve, you lose services, you fall back.”

 

Theme 5: Supports for parents and families. Families voiced the need for additional supports at different stages, from pregnancy and postpartum through early childhood and school-age years. They described needs for more support related to health promotion and health care, parenting education including relationship support for both mothers and fathers, benefits such as paid family leave and sick leave, affordable high-quality childcare, and safe, positive after school activities for children and youth. While additional details related to this theme are presented in the domain-specific summaries below, the core focus on family support across all stages stood out in the NA.

 

"I felt welcome at prenatal visits when they introduced themselves and included me [dad] in the conversation. The doctor let me know as a father how much I can help. Included both of us."

 

 "I have no family support in this country."

 

Theme 6: Social support and social cohesion. Beyond the needs for tangible parent supports described in Theme 5, participants across all demographic groups frequently described feelings of isolation due to geographic, social, and language-based barriers. Participants identified family and friend support as an important asset, while lack of those supports was identified as a factor that negatively impacts health and well-being, including mental health. They offered recommendations including:

• more support groups, both peer and face-to-face support
• opportunities and resources to support mentoring, encouragement, and positive relationships for children, teens, and adults
• more community events for socializing and to connect with each other
• more opportunities for community engagement, empowerment, and organization.

 

More fundamentally, participants called for the need to cultivate a better sense of community, in which community members help or care for each other and children. They described the need for more courtesy, kindness, empathy, and trust among community members–this was raised in more than half the forums across all populations and demographic groups.

 

"I feel isolated because not everyone is experiencing what I am experiencing.”

 

"If they had these types of sessions in the community to talk about success stories there might be more success."

 

"I feel like I need someone to listen like my friend.”

 

Theme 7: Health care access and quality. Participants across many local forums (approximately one-third of sessions) described that they do not “feel heard” by their health care providers. They described feeling that their concerns and treatment preferences are not taken seriously, and that providers do not care about them or understand what they are going through, resulting in people avoiding seeking care and services because they feel judged or anticipate being treated poorly. Participants expressed a desire for providers to show more compassion and respect and to have more providers who are like themselves–from their own community and who speak their language.

 

Participants describe numerous barriers to care including long wait times for appointments, inconvenient hours (paired with inability to take time off from work), long travel time/distance, lack of medical and dental providers accepting Medicaid or uninsured patients, high insurance costs and co-pays (especially for prescriptions), inadequate insurance coverage, high provider turnover or lack of continuity, and insufficient numbers of providers in some communities. They recommended bias and cultural competence training for providers and staff, help to improve their own advocacy skills and health literacy, extended service hours, and more assistance with insurance and care navigation.

 

Theme 8: Community and environmental safety. Concerns about community violence and safety were another common theme. In many forums, participants reported feeling unsafe in their communities, specifically describing guns, gangs, and public drug use, with special concern for children’s safety in schools and neighborhoods. Parents and teens described a sense of isolation related to crime and safety concerns. Participants called for safer communities, better community and police relationships, adult supervision for children, more community centers and after-school programs, safer parks and playground equipment, and more greenspace where families can go safely. Additionally, many groups raised concerns about visible trash in streets and public spaces and air, water, and noise pollution that negatively impact their communities.

 

"I have to cover my kids' eyes as they walk through the park."

 

“I see syringes in the stairs, in the elevators, this is a big need in my building.”

"This a prison yard or a community?"

 

Theme 9: Housing. More than half the forums discussed the need for affordable housing. The high cost of rent and utilities, the prohibitive expense of security deposits, long waits and cumbersome processes for housing subsidies, a lack of safe quality housing appropriate for families, and lack of accountability from landlords were frequently cited as barriers. Homelessness and the need for more shelters for families were also mentioned frequently.

 

"Affordable housing is not affordable for people trying to get out of the project."

 

“Kids are sleeping on top of each other because there's no room in the houses. It’s crazy.”

 

"I don't feel there's a system in place to make sure landlords treat you like human beings."

 

Theme 10: Healthy eating. Most groups described a need for sources for affordable fresh and healthy foods in their communities. Participants indicated that healthy foods are too expensive, while unhealthy foods are more affordable and have more coupons. Some stores and food pantries provide food that is rotten or expired. Community members recommended removing advertising for unhealthy and fast foods, more farmer’s markets (emphasizing food rather than crafts), more food pantries with healthy options, more affordable healthy food in schools, community gardens, and education for students and community members on healthy food choices, cooking, and budgeting.

 

"There is never enough to go around. We go to soup kitchen, pantries but there needs to be more.”

 

“We need more healthy food in the hood all hoods have crappy food."

 

Domain-specific findings are summarized below. A bibliography of data sources used for these summaries is in Appendix 3. All data cited are for the most recent year available.

 

Summary

The NA themes summarized above cut across the Title V domains and provided important context for relevant findings reported in the domain-specific summaries that follow.

 

Domain 1: Maternal & Women’s Health

Women’s health throughout the life course is fundamentally important to their own well-being and the health and well-being of children, families, and communities. Key indicators of women’s health in NYS show that while some measures are improving, others have been flat or are getting worse. Moreover, there are significant and persistent racial, ethnic, and economic disparities across virtually all measures of maternal and women’s health.

 

While nearly 80% of reproductive age women received a well-woman visit in the past year, only 35% of women report ever talking with a health care provider about how to prepare for a healthy pregnancy, and only 25% of reproductive age women enrolled in Medicaid are using a moderately or highly effective method of contraception. For pregnant women, early entry into prenatal care has continued to improve to 80.9%, although preventive dental care during pregnancy is much lower at 43.3% and continues to trend downward. Cesarean deliveries among low-risk first births declined slightly to 28.9%, and the percent of elective early deliveries without medical indication declined to 1%. Women’s use of alcohol (7.3%) and tobacco (4.3%) during pregnancy have been declining, but maternal opioid use, as measured by the rate of Neonatal Abstinence Syndrome (NAS) (5.0 per 1,000 births), is increasing. Maternal mortality rates, after a period of increase, have improved the past two years, but unacceptable disparities persist with Black or African American women three to four times more likely to die from causes related to their pregnancy than White women. Severe maternal morbidity, after a period of increasing, has recently improved to 80 per 10,000 deliveries (of note, this measure was redefined this year). The percentage of women reporting postpartum depression symptoms (15.5%) has continued to increase for several years.

 

Through the statewide forums and public surveys, over 800 NYS women and girls voiced many needs and challenges, as well as current strengths and recommendations for improvement–encompassing and echoing all 10 cross-cutting themes described above. Specific to maternal and women’s health, participants emphasized the need for better supports and services related to family planning, pregnancy, birth, and postpartum care, especially resources and coping supports for maternal depression. Women and their families want more continuous support in the postpartum period beyond a single medical visit, and they called for increased and more extended access to doulas, midwives, home visiting, and breastfeeding support services, along with longer paid leave for both mothers and fathers. They called for more programs specifically for fathers, more peer support groups for women and families, and supports for co-parenting, conflict resolution, and healthy partner relationships. This input builds on themes previously voiced by Black or African American women during a series of statewide listening forums conducted in 2018 on racial disparities and maternal mortality. Through those seven forums, the New York State Department of Health (NYSDOH) heard from nearly 250 women who shared their experiences accessing care and giving birth in NYS. Across the state, women frequently identified themes impacting maternal health outcomes for  Black or African American women, including disparate levels of care between public and private hospitals and insurance payers; lack of connection to and trust in health care providers; desire to have more time with providers; the need for better information and education, especially within lower income communities; and the pervasive impact of racism and bias on the care received and subsequent birth outcomes.

 

“A lot of people are afraid to get services, if they use drugs, they think their baby will get taken away.”

 

“I have to wait for my husband to get home to go shopping or do anything.”

 

“I had a C-section was alone at home. I did not have help.”

 

“Even with…family around it is still needed to have a support specific to the mother.”

 

“We used to have a village and today it’s gone.”

 

“Doctors don’t respect us because they don’t value us.”

 

“[Coming into the hospital with Medicaid] you are already labeled. You are already treated a certain way.”

 

Domain 2: Perinatal & Infant Health

Infant mortality is a fundamental indicator of the health of a nation, state, or community. Infant mortality rates have continued to improve in NYS, declining to 4.6 infant deaths per 1,000 births. This is better than the U.S. infant mortality rate. The neonatal mortality rate (within the first month of life), which accounts for two-thirds of infant deaths, has also declined. This mirrors declines in preterm-related mortality and demonstrates continued success in ensuring that the majority (91.2%) of the highest risk very low birth weight infants are delivered in hospitals with Level III+ neonatal intensive care units. However, previous improvements in the overall preterm birth rate may be reversing, with an increase from the prior low of 8.7% back to 9% of births over the past two years and a parallel increase in the percentage of early term births (defined as 37-38 week) to 23.7%. Post-neonatal mortality (defined as age one month to one year) has remained fairly steady (1.5 deaths per 1,000 births), but the sudden unexpected infant death (SUID) mortality rate has increased to 58.3 per 100,000 births after fluctuating the past several years, and safe sleep practices including sleep position and sleep environment likewise have not improved. Significant racial disparities persist for all these measures. As an important cause of infant morbidity, the rate of NAS has continued to increase, with higher rates among infants who are White, low income, and residing in non-metropolitan areas. Breastfeeding has been fluctuating, with 82.9% of infants ever breastfed. Only 23.2% were exclusively breastfed through age six months, with lower rates among Black or African American and Hispanic infants.

 

The 37 forums included seven forums conducted in collaboration with the NYS Maternal, Infant, and Early Child Home Visiting (MIECHV) program to hear specifically from expectant parents and parents of young children who are either currently enrolled in, or potentially eligible for, home visiting programs (230 individuals, including 203 mothers, 25 fathers, and 2 unspecified participants). Their comments encompassed all ten cross-cutting themes described above, with issues specific to perinatal and infant periods. Many families expressed the need to raise awareness about available community resources and services, in particular for postpartum depression, and to increase the availability and scope of services to support families in the postpartum period, including postpartum doulas, home visitors, community health workers, and breastfeeding support. Transportation barriers described across groups were especially challenging for parents with young children, and homelessness is a special challenge for families seeking family-friendly shelters. Parents described a desire for more parenting education classes and resources on a range of specific topics (e.g., infant care, infant development, childproofing and safety, behavior and discipline, bonding). They called for more classes and programs specifically for fathers, including single fathers, more parenting support groups, and more community activities and programs to help new parents get out of the house. Returning to work after birth is a special challenge for lower income families, and the need for longer paid parental leave and sick leave for both mothers and fathers was emphasized. Childcare was a topic of frequent concern, with parents describing challenges to find affordable, reliable, safe, and trusted child-care providers–both to work and to be able to participate in community programs and services–especially for parents working second and third shifts and variable schedules.

 

"I don't think people value spaces to vent and talk. That's why I really enjoy the fatherhood program."

 

"[I] can't even roll a stroller in some neighborhoods."

 

 "By the time you go to work, pay for daycare, you were better off on services and not working- more poor than when you got help."

 

"I encourage people to enroll into whatever program is offered because through that you can be connected to other services that might be available in the community."

 

 

Domain 3: Child Health

Families report that 91.2% of NYS children age 0-5 and 91.6% of age 6-11 are in excellent or very good health, but this percentage is lower for children who are Black or African American, Hispanic, are poor, or who have parents born outside the U.S. or with lower education levels. Nearly 20% of NYS children are living in poverty, 23% receive supplemental nutrition assistance program benefits, and 4.3% of children enrolled in public schools are homeless, although all of these have improved over the last decade. Approximately 17 per 1,000 NYS children were reported as victims of maltreatment, and over 23,000 children and youth are in foster care. Mortality rates among children ages 1-9 years have decreased by 10% over the past five years to 13.7 deaths per 100,000 children, with conditions originating in the perinatal period and injuries as the leading causes of death and 171 injury-related hospitalizations per 100,000 children ages 0-9. Over 11.1% of children age 1-17 have decayed teeth or cavities and 13.7% of children age 2-4 are obese. Families report that 27% of children age 6-11 years are physically active for at least 60 minutes daily, and 72% ate a family meal with everyone living in the household four or more days weekly. Approximately 10.7% of NYS children live in a house where someone smokes inside the house.

 

The vast majority (over 97%) of NYS children have health insurance, but fewer (74.6%) have insurance that is adequate and continuous, and only 47.2% of children without special health care needs receive coordinated, ongoing, comprehensive care that meets the criteria for medical home. While 72.2% of children reported having preventive medical and 79.3% reported a preventive dental visit in the past year, rates of both are lower for Black or African American children (66% and 70.4%%, respectively). Specific preventive care services vary: 68.8% of children age 19-35 months had a complete the full vaccine series; 27.1% of children age 9-35 months reported a developmental screening using a parent-completed screening tool; 60.8% of children were tested for blood lead levels two times by the age of 36 month years in accordance with NYS requirements; and 69.6% of children age 6-17 were vaccinated against influenza.

 

Forum participants, including many parents and grandparents, voiced concerns and strengths related to children’s health and well-being, reiterating the cross-cutting themes summarized above. Families describe transportation with children as especially challenging and called for more family-friendly transportation and placing transportation near family activities and services. They asked for health care and other service providers that are more respectful, compassionate, and reflective of their languages and cultures, where they do not feel judged or stigmatized.

 

Improving community and neighborhood environments was a major theme among families. They emphasized the need for improved pedestrian safety and better sidewalks, with concerns about children walking along unsafe roads, and lack of access to fresh, affordable, healthy foods in the community and schools. Community violence, gangs, and drug use–in both neighborhoods and schools–were major concerns, leading to increased fear and social isolation. Pollution and trash in the streets were also raised as concerns that impact children’s health. Families voiced the desire for more activities, programs, open greenspace and safe places for their children after school, summers, and on weekends, along with more family activities and facilities outside of work hours to support quality time with their children. They called for more mentoring and positive relationships for children, and a better sense of community connection, trust, engagement, and support.

 

"Have to drive 10 minutes down the mountain to reach bus stop for child."

 

"I had concerns with my daughter gaining weight and the doctor said it was fine. Then when her 4-year check-up came she said it was a concern. She didn't listen to me."

 

“Back in the old days, neighbors watched out for others' children.”

 

"I want a community where they can grow up and know that they're safe and can go anywhere they want to go and trust the adults in their community. Right now I am scared for my kids."

 

Domain 4: Children & Youth with Special Health Care Needs (CYSHCN)

An estimated 15.8% (approximately 656,000 children) of children and youth age birth to 17 years in NYS have one or more special health care needs. The most commonly reported chronic conditions among NYS children are allergies (18.3%), oral health problems (11.1%), Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD) (5.3%), asthma (7.5%), anxiety (6.9%), developmental delays (5.7%), autism spectrum disorders (3.1%), and depression (2.9%). Lead poisoning remains a special concern among NYS children because of the high percentage of older housing and other risk factors, with elevated blood lead levels (defined as greater than or equal to 10 mcg/dL) identified in 3.7 out of 1000 children tested for lead. NYS has recently changed the definition to great than or equal to 5 mcg/dL.

 

Almost half of CYSHCN live in households with income below 200% of the federal poverty level. CYSHCN are more likely to have their daily activities greatly affected by their health condition(s), to miss 11 or more school days a year, and to have trouble making or keeping friends. Families of CYSHCN report higher out-of-pocket medical expenses, have trouble paying medical bills, spend more time coordinating their child’s health care, and report reducing or stopping work due to their child’s health. Families of CYSHCN report that only15.2% receive care in a well-functioning system, and 41.7% received care meeting all criteria for medical home, although these may be improving. Nearly all (99.98%) of resident births were screened for 50 disorders by the newborn bloodspot screening program. Nearly 1.3% of newborn hearing screenings had abnormal results; of these, only 29.5% had a documented follow-up screening. NYSDOH is actively working to improve completion and documentation of follow-up hearing testing. About 53.5% of children age 3-17 with a mental or behavioral condition received treatment or counseling. Among families of infants and toddlers participating in the State’s Early Intervention Program for federal Fiscal Year 2018-19, 63.7% met the State’s standard for positive impact on families using the Rasch methodology. The Department has positive anecdotal evidence from parents directly impacted by the EIP’s Improving Family Centeredness Together (IFaCT) quality improvement initiative. Only 17.8% of youth age 12-17 with special health care needs received services necessary to make transitions to adult health care, and this appears to be getting worse.

 

To better understand the gaps, barriers, and needs of families with CYSHCN, the NYSDOH Division of Family Health (DFH) implemented a care mapping process in partnership with several programs, including NY’s Parent to Parent and Leadership Education in Neurodevelopmental Disabilities (LEND) programs, to collect feedback from parents and caregivers of CYSHCN and professionals who serve them. Recruitment was conducted from March 2017-June 2018, and feedback collected from 138 caregivers and 40 providers through a combination of online and paper mapping tools. Common challenges reported by caregivers included accessing and coordinating medical care and related services, identifying and coordinating child care, providing emotional and social supports for children and families, providing financial support including health insurance, navigating and obtaining assistance from the school system, integrating their children and their families into the community, providing and coordinating transportation, and transitioning to adult services. In addition, providers of CYSHCN report challenges connecting with families, staying up to date with knowledge of available community resources, and providing continuity of care. These findings resonate with the input received through the forums, in which 39 parents or caregivers of CYSHCN shared concerns and ideas related to both the cross-cutting themes described above and concerns more specific to families of CYSHCN.

 

“[There should be] easier access to those resources so I do not have to be on a computer for 6 hours doing research.”

 

“I am a mother of three special needs kids. I have to travel to Buffalo 8-15 times a month because there are no pediatrician offices for my son."

 

"I feel isolated because not everyone is experiencing what I am experiencing.”

 

“My son cries because he does not have any friends.”

 

“A child with special needs does not live in a vacuum. They are part of a family and have to address their needs and other family needs.”

 

“I have to choose between paying mortgage and putting food on the table and the medical needs of my child.”

 

Domain 5: Adolescent Health

Families report that nearly 90.9% of NYS youth age 12-17 are in excellent or very good health. All-cause mortality for teens (21.9 per 100,000 age 10-19) has been declining. Injuries remain the leading cause of adolescent mortality, and for every injury death there are more than ten youth hospitalized for non-fatal injuries (221 per 100,000 age 10-19). While mortality related to motor vehicle injuries (5 per 100,000 age 15-19) has declined, suicide (6.0 per 100,000 age 15-19) has increased.

 

Depression among teens is increasing, with 11.5% of NYS teens age 12-17 experiencing a major depressive episode in the past year, over 30% of high school (HS) students reporting feeling sad or hopeless for more than two weeks in the past year, and over 10% of HS students reporting that they attempted suicide. Parents report that 33.1% of teens age 12-17 have been bullied and 12.6% of teens have bullied others. These rates are consistent with reports directly from HS students, 27.7% of whom reported that they were bullied electronically or at school, which has been steadily increasing. Nearly one in ten HS students report that they did not go to school because they felt unsafe at or on their way to/from school. About 10% of HS students report experiencing sexual dating violence and 10% physical dating violence. Youth arrests (age 10-17) ranged from 33 per 100,000 for weapons, 62 per 100,000 for assault, and nearly 300 per 100,000 for drug abuse.

 

About 7% of HS students report no fruit consumption in the past week, nearly 14% report drinking soda daily, and over 15% report never eating breakfast in the past week. Parents report that only 19.9% of teens age 12-17 were physically active at least 60 minutes every day, and 14.8% of HS students report no days with physical activity of 60 minutes or more in the past week. Over 40% of HS students report spending more than three hours daily using electronic devices (video games, social media, etc.), and 21% report three or more hours watching television. Nearly 30% of HS students are obese or overweight. Almost 80% of students report getting less than eight hours of sleep on an average school night.

 

Alcohol and combustible cigarette use among teens both have been declining, but use of electronic vaping products has increased dramatically, with over 27% of HS students reporting past or current use. Nearly 4% of students report ever using heroin. About 22% of HS students are currently sexually active, and among this group nearly 16% reported using no method to prevent pregnancy and over 41% reported not using condoms at last intercourse. The teen birth rate (11.7 per 1,000 girls 15-19) continued to decline, but case rates of sexually transmitted infections (STI), such as gonorrhea and chlamydia, among teens have not declined.

 

From October 2018 to April 2019, the ACT for Youth Center for Community Action based at Cornell University gathered input from youth around the state to explore why teen pregnancy rates have improved while STI rates have not. Over 200 young people completed surveys and over 75 participated in focus groups to discuss where they seek reproductive health care, their attitudes about sexual relationships, and their perceptions of sexual risk reduction behaviors. Participants indicated that teen pregnancy rates are down because of better education and awareness about sexual health, better access to and less stigma about contraception and condoms, teens engaging in other activities (both recreational, such as video games or social media, and other types of sexual activity, such as sending pictures), teens having other priorities and goals, and teens engaging in more oral or anal sex. To explain why STI rates are not improving, participants suggested teens are not using condoms for oral and anal sex; are more focused on pregnancy prevention than STI prevention; have misconceptions about personal STI risk, how they are transmitted, and the purpose of contraception; and have issues with navigating relationships, whether partners lying to each other about STI status or other partners, coercion, or open relationships.

 

Disparities vary across these behaviors and outcomes. White students report higher rates of bullying, but both Black or African American and Hispanic students are more likely to miss school because of safety fears. Hispanic students are more likely to report depression symptoms and suicide attempts. Cigarette smoking and alcohol use are higher among White teens, while Black or African American and Hispanic teens are more likely to use other illegal drugs, including heroin. Black or African American and Hispanic teens also report lower fruit and higher soda consumption, less physical activity, and higher rates of obesity and inadequate sleep. There are dramatic disparities across virtually all measures based on sexual identity; for example, among HS students identifying as gay, lesbian, or bisexual, 60% report depression symptoms, 26% report a suicide attempt, and 10% have used heroin.

 

In addition to the surveys and focus groups with young people, ACT for Youth interviewed 19 gender and sexually fluid young people to learn more about their experiences and perceptions about sexual health. Common themes discussed included that unprotected sex is common among this population and that sex work and survival sex happen. They discussed how sex education does not meet their needs: “Even in schools the sex education is very binary, doesn’t really talk about gay sex or lesbian sex, it is always just mostly on reproductive sex…It is mostly about just about how to prevent pregnancy.” Similarly, participants discussed not feeling affirmed by providers when accessing sexual health care as a barrier.

 

Most teens ages 12-17 had a preventive medical (81.3%) and preventive dental (79.3%) visits in the past year, and rates have been increasing. Teen vaccination rates for tetanus, diphtheria, and pertussis (i.e., whooping cough) (Tdap) (91.7%) and meningococcus (94.9%) are also relatively high, but the percentage vaccinated for human papilloma virus (HPV) (71.2% of girls and 67.1% of boys) is lower. Only 16.4% of adolescents without special health care needs received services necessary to transition to adult health care.

 

Over 150 adolescents participated in forums across the state. They called for more positive mentors and social support and increased access to teen-friendly community activities, including fitness centers and areas for exercise. Teens spoke frequently of the need for better housing, healthy foods, and economic supports for their families. Teens expressed the desire for more compassion and respect from healthcare providers, and more providers who reflect their cultures and speak their language. Along similar lines, confidentiality was raised during the adolescent surveys and focus groups as a concern when seeking sexual and reproductive health care. They indicated they are less concerned about the confidentiality of electronic medical records and more concerned about interpersonal confidentiality.

 

“Everybody needs to talk even for one second or ten minutes. Even boys.”

 

“My mom waited 3 years for them to put on a door."

 

“Must have hope that you trust your provider and make sure someone is not trying to hurt you."

 

"I feel like we should have more African American counselors. Because the counselors that are there, I feel like the students don't feel comfortable talking to them."

 

“If I admit to needing care, then I admit to doing certain things. By seeking care, there might be guilt.”

 

NY’s Title V and CYSHCN Programs are based in the NYSDOH, an executive branch state agency under the direction of Commissioner Howard Zucker MD, JD, who was appointed by the Governor. Within NYSDOH, they are in the Office of Public Health, Center for Community Health, Division of Family Health (DFH). The DFH Director, Lauren J. Tobias, is the Title V Director (see organizational charts).

 

NYSDOH is responsible for the administration of all programs carried out with allotments under Title V, most of which are organizationally within DFH. Title V-funded programs and staff are integrated across DFH, its Office of Medical Directors, and its four bureaus: Women, Infant and Adolescent Health; Child Health; Early Intervention; and Administration.

 

Several key Title V-funded programs and initiatives are based in other parts of NYSDOH, including: American Indian Health Program (Office of Minority Health & Health Disparities), Asthma Prevention & Control (Division of Chronic Disease Prevention), Lead Poisoning Prevention (Center for Environmental Health), Migrant & Seasonal Farmworker Program (Center for Community Health), and Newborn Bloodspot Screening (Wadsworth Center). A list of Title V-funded programs is in Appendix 4.

 

NY’s commitment to protecting and promoting the health and well-being of the priority population is manifest in a comprehensive array of programs and services. Most services are carried out at the community level by local partners. NYSDOH and Title V program provide, administer, and oversee funding, training, technical assistance, data support, quality improvement, and other policy and program efforts to guide and support local and regional systems and programs. Within NYSDOH, staff, who are in Albany, coordinate with NYSDOH colleagues in regional offices to support and oversee Title V funded programs. See Appendix 4 for a description of programs and services funded directly through the Title V grant.

 

In addition to administering specific programs and initiatives, Title V staff routinely collaborate with a wide array of partners, both within and outside NYSDOH, to help inform, strengthen, and coordinate statewide systems of services and supports for women, children, and families. See Section III.C.2.b.iii. below for more information on partnerships.

 

Of note, NY’s Title V Program works extensively with the state’s Medicaid program and other partners to support Children and Youth with Special Health Care Needs (CYSHCN) and their families as a priority population, and to ensure statewide and local systems are in place to meet their needs. In NYS, all (Social Security Income) SSI beneficiaries, including blind and disabled children receiving benefits under SSI, are categorically eligible for Medicaid; thus, Title V funds are not used for these direct care services.

 

This year, NY’s Title V Program capacity was significantly challenged by COVID-19, with NYS as an epicenter for the pandemic in the U.S. As staff rapidly adjusted to working remotely, all Title V and other DFH programs mobilized to support the state’s response. Staff led and contributed to wide-ranging response efforts including development and dissemination of guidance documents, webinars for local providers, and facilitation of telehealth and other virtual programming. Some staff were deployed to serve on intra- and inter-agency workgroups and support teams to coordinate regional epidemiology support and to directly assist with testing and contact tracing activities. The Title V program staffed the Governor’s COVID-19 Maternity Task Force, convened to rapidly respond and develop recommendations related to birthing facilities and to review the literature on the impact of COVID-19 on pregnancy. Local MCH-serving programs have made significant adjustments to provide continued support for vulnerable MCH populations (see Appendix 5 for details).

 

The impact of the pandemic on families, communities, and MCH programs is expected to be a continuously evolving challenge for the foreseeable future. Further assessment of how Title V programs have responded, how the capacity of programs may be leveraged, assess how they have been impacted by continued response needs will be addressed in next year’s application.

 

A strong and diverse workforce is needed to lead and implement core Maternal and Child Health (MCH) public health functions, effectively administer program resources, and collaborate with families and organizational partners at all levels. The size and complexity of NYS populations and service systems require significant leadership and capacity for program and policy development, program operations and implementation, data analysis and evaluation, and intra- and inter-agency communication and collaboration.

 

There are 128 filled Title V-funded positions within NYSDOH central, regional, and district offices, supplemented with additional non-Title V-funded positions supporting Title V programs and activities. Staff cover the full range of MCH populations and essential public health services.

 

Key Title V staff in the NYSDOH Division of Family Health (DFH) include:

• Lauren J. Tobias, MPP, DFH Director and NYS Title V Director
• Kirsten Siegenthaler, PhD, MSPH, Associate Director, DFH
• Marilyn Kacica, MD, MPH, Medical Director, DFH
• Megan Tyrrell, Title V Coordinator, DFH
• Christopher Kus, MD, MPH, Associate Medical Director, DFH
• Dionne Richardson, DDS, MPH, Public Health Dental Director, DFH
• Michael Acosta, MPP, Bureau of Women, Infant and Adolescent Health (BWIAH) Associate Director
• Eric Zasada, MPA, BWIAH Assistant Director and NYS Title V Adolescent Health Coordinator
• Suzanne Swan, MPH, Bureau of Child Health Director and NYS Title V Child and Youth Special Health Care Needs (CYSHCN) Director
• Constance Donohue, AuD, CCC-A, Bureau of Early Intervention Director
• Deborah Rock, Bureau of Administration Director

 

The BWIAH Director position is vacant following Kristine Mesler’s retirement in late 2019. See Appendix 6 for brief descriptions of key qualifications for these staff.

 

NYS has experienced the same workforce trends described in national reports and surveys, including attrition and shrinking public workforce, with a large percentage of the current workforce poised to retire within the next five years, and needs for additional knowledge and skill development related to both emerging and persistent MCH challenges. Of critical importance, the diversity of the MCH workforce nationally and in NYS does not yet reflect the diverse populations the MCH workforce needs to serve and support.

 

The Title V program’s internal capacity is enhanced and supplemented through formal and informal partnerships with external organizations. For example, the statewide and regional centers described above provide additional subject matter expertise, training, and technical assistance capacity for specific program areas. The Title V program also partners extensively with the HRSA-funded MCH Public Health Catalyst program based at University at Albany School of Public Health. The Catalyst program is engaged in recruiting and training the next generation of MCH professionals, with a special focus on individuals from disadvantaged and underrepresented populations. Specific partnerships between the Catalyst and Title V programs have supported numerous student projects and internships, an award-winning national webcast on maternal mortality, a literature review on COVID-19 and pregnancy for the COVID-19 Maternity Task Force, and extensive technical assistance to coordinate this five-year Title V NA and application, among others.

 

Parent and family members are critical partners in the Title V program’s work at all levels.

 

At the state level:

• Michelle Juda, the Executive Director NYS Parent to Parent and the state’s Family2Family Information Center, serves on the Title V Advisory Council.
• ACT for Youth Center for Community Action has a youth advisory board.
• Community members will serve on the Maternal Mortality and Morbidity Advisory Council (currently being established).

 

At the regional level:

• CYSHCN Regional Support Centers are required to hire a parent of a CYSHCN and convene family forums to provide direct input on program development.
• NYS Perinatal Quality Collaborative (NYSPQC) teams include patients, families, and those with lived experience in their educational curricula.

 

At the community level:

• School Based Health Centers (SBHCs) and Comprehensive Adolescent Pregnancy Prevention (CAPP) programs routinely engage parents and youth in their program activities
• Maternal and Infant Community Health Collaborative (MICHC) programs are engaged in developing work with community advisory boards.

 

Partnerships and collaborations with other programs, organizations, and community groups are a fundamental way in which NY’s Title V Program strives to meet the needs of MCH populations. These span partnerships with other state MCH-serving public health programs, within the NYS Department of Health (NYSDOH) Division of Family Health (DFH) and with other NYSDOH programs, other state and local agencies, community-based and private sector partners, families, and consumers. An overview of key partners and collaborations is in Appendix 7.

 

Findings from the statewide Needs Assessment (NA) drove the 10 MCH priorities identified for the NYS Title V program for the next five years. To identify and choose priorities, the following factors were considered:

 

• Areas identified by families and community members as their most important needs and priorities;
• Areas for which Title V infrastructure, capacity, partnerships, and investments can be leveraged; and
• Areas that the state Title V program can impact over the next five years in a lead or key supporting role.

 

While all factors are important, listening and responding to community voices was given the most weight. The Title V leadership team asked the question: How can we be responsive to the themes voiced by families and communities, within the context of the program infrastructure and resources we have, and with a focus on making measurable progress in specific areas encompassed by the HRSA national performance measures?

 

Given this approach, the starting point for choosing priorities was to review and discuss the top themes emerging from the forums, public survey, and other companion efforts described in the methodology and findings above. Ten priorities were identified, corresponding directly to the ten cross-cutting themes described in Findings (Section b.1).

 

1. Health Care: Address equity, bias, quality of care, and barriers to access in health care services for women and families, especially for communities of color and low-income communities
2. Community Services: Promote awareness of and enhance the availability, accessibility, and coordination of community services for families and youth, including children and youth with special health care needs and their families, with a focus on communities most impacted by systemic barriers including racism.
3. Parenting and Family Support: Enhance supports for parents and families, especially those with children with special health care needs, and   inclusive of all family members and caregivers
4. Social Support and Cohesion: Cultivate and enhance social support and social cohesion opportunities for individuals and families who experience isolation as a result of systemic barriers including racism, across the life course
5. Healthy Food: Increase access to affordable fresh and healthy foods in communities.
6. Community & Environmental Safety: Address community and environmental safety for children, youth, and families.
7. Poverty: Acknowledge and address the fundamental challenges faces by families in poverty and near-poverty, including the “working poor” as a result of systemic barriers, including racism.
8. Awareness of Resources: Increase awareness of resources and services in the community among families and the providers who serve them.
9. Housing: Increase the availability and quality of affordable housing.
10. Transportation: Address transportation barriers for individuals and families.

 

This approach to priority-setting is different from the prior cycle, in which priorities were domain-specific and directly linked to specific objectives and performance measures. For this five-year cycle, NY has chosen instead to adopt a set of priorities that serve as a broad vision that is directly responsive to the cross-cutting needs, challenges, and positive ideas shared by community members. Thus, all priorities are “new” from the previous cycle, as reflected in Form 9. The priorities will serve as a compass to guide the work of all Title V programs in considering how existing infrastructure, capacity, services, partnerships, and other resources can be leveraged to more effectively address these critical priorities.

 

Guided by these priorities, the leadership team selected five national performance measures (NPMs) and two state performance measures (SPMs) as the basis for the NYS Title V State Action Plan for the next five years. Because the priorities are cross-cutting, there is not one-to-one alignment between priorities and performance measures. Rather, the NPMs and SPMs were selected to collectively drive work in areas that align with these cross-cutting priorities and for which the leadership team determined our Title V program can make meaningful progress over the next five years. See the State Action Plan Table for a more detailed crosswalk of the priorities and selected performance measures.