Needs Assessment  

III.C. 2. a Process Description:  

Title V Grant Guiding Framework 

The Title V Needs Assessment was guided by the following conceptual frameworks: the RIDOH Strategic Framework and the Lifecourse Approach. RIDOH’s strategic framework serves as the Department’s Framework for reducing health disparities and achieving health equity in RI.  This framework encompasses three leading priorities and five strategies:  

Additionally, RIDOH will adopt a racial equity framework that will be applied to MCH implementation and priorities. Your race, ethnicity, ZIP code, language, sexual orientation, gender identity, disability status, religion, occupation, income, age, or level of education shouldn’t determine your health. Yet many population groups face obstacles to health that are systemic, avoidable, unfair, and unjust. Racial inequities persist in every system across our country, from healthcare to education, criminal justice, housing, and the economy. These inequities can’t be explained by differences in socioeconomic status. Rather, they result from powerful forces in our system and institutions. To improve health outcomes for everyone we serve, public health must make advancing racial equity a core part of its mission.  

Finally, the Lifecourse Approach is a way of looking back across an individual’s (or a group's) life experiences to better understand current patterns of health and disease. It aims to identify the underlying biological and behavioral processes that operate across the lifespan. Currently, the RIDOH takes a life course approach when collecting, analyzing, and reporting health indicators. Some important principles of the Lifecourse Approach include: 

1.   Today’s experiences influence tomorrow’s health. 

2.   The broader community environment strongly affects health. 

3.   There are critical periods of growth and development (not just in early infancy, but also during childhood and adolescence) when environmental exposures can do more damage to long-term health than they would at other times in a person’s life. 

These conceptual frameworks were utilized in order to guide every action taken to complete the Title V Needs Assessment. Our methodologies of analyzing and interpreting data, collecting community input, and selecting priorities and strategies were influenced by these core concepts of health equity, social determinants of health, and upstream and downstream effects. 

Methodology 

The needs assessment process was undertaken in an efficient and collaborative manner that involved stakeholders from across the state. These collaborators will be discussed more in-depth throughout this section. The needs assessment was a systematic process that aimed to acquire an accurate picture of the strengths and weaknesses of Rhode Island’s public health system and identify the most appropriate programs and policies to promote the health of pregnant or child-bearing aged individuals, infants, children (including children with special healthcare needs), adolescents, and their families. As will be discussed below, the needs assessment team took the time to thoroughly understand the varying concerns and burdens of culturally and socio-economically diverse communities across the state. 

Planning Phase  

The needs assessment required a cooperative planning process before tasks were undertaken. A key partner of the RI Title V MCH Needs assessment was the statewide Maternal, Infant, and Early Childhood Home Visiting Program (MIECHV) Needs Assessment. RI MIECHV supports voluntary, evidence-based home visiting services for pregnant individuals and families with children under the age of four. Due to both assessments being due in 2020, it was a unique opportunity for both programs to leverage and align efforts, activities, and fiscal resources. Other key and innovative Department of Health partners included the Adolescent, School & Reproductive Health Programs, Center for Health Data Analysis (CHDA), Health Equity Zones, and KIDSNET. The process also included contracting with a consulting agency, ABT Associates, and community partners, SISTA FIRE and Rhode Island Parent Information Network (RIPIN). SISTA FIRE is a member-led network of womxn of color working to build our collective power for social, economic, and political transformation. RIPIN is a 501(c)(3), charitable, non-profit organization that helps to support and advocate for parents with children with special healthcare needs (CSHCN). All contracted relationships supported this needs assessment in outlining digital and personal strategies for community and health professional workforce outreach. The planning process took place over the course of a year and involved bi-weekly to monthly meetings with contracted and partnering programs. During the planning phase, the Title V team compiled and reviewed other statewide and community based reports that were available. Some of these reports included, the Preschool Development Grant Birth to Five Family and Workforce Needs Assessments, 2019 Health Equity Zones Substance Use Disorder Needs Assessment, 2018 DCYF Statewide Assessment Instrument, 2020 Health Equity Zone Needs Assessments, 2019 Rhode Island Parent Information Network policy brief, 2017 RI HIV, Sexually Transmitted Diseases, and Viral Hepatitis Surveillance Report, 2019 Community Health Needs Assessment Service Area Demographics reports, etc. 

Secondary Data Analysis  

The Title V Program’s commitment to data is essential for informing the 5-year needs assessment process.  To help identify future state priority needs in Rhode Island, the Title V Program intends to review and describe ongoing MCH population-based data. In the preliminary phase of the secondary data analysis, we examined Title V measures by comparing them to national data and Healthy People 2020 targets, as well as identify existing disparities within racial/ethnic groups and populations with disabilities.  The results of this analysis currently exist in our Title V MCH dashboard, which was shared with MCH program staff.  This analysis provided a broad examination of locating areas of concerns using Title V measures.  To better understand health problems that lead to sound data-driven decision making, there is a need to explore and analyze all MCH data available. 

The Title V program entered a second phase of secondary data analysis which examined  MCH data collected at RIDOH using the problems-based needs assessment approach.  The purpose of this approach is to help quantify MCH problems. An MCH problem can be a health status measure, a risk factor, or a health service deficiency.  MCH-related programs were contacted to collaborate and identify a list of MCH problems from MCH population-based data.  Data sources used for this analysis were birth and death certificates, hospital discharge data, Pregnancy Risk Assessment Monitoring System (PRAMS), Youth Risk Behavior Surveillance System (YRBS), National Survey of Children’s Health (NSCH), and registries from birth defects and sexually transmitted infections.  After a final review of the data, there were a total of 67 MCH problems identified for analysis. 

The next step in this phase was to develop criteria that would prioritize the MCH problems using selected criteria: magnitude, trend, and racial ethnic disparities.  The magnitude indicator measured the impact among demographic populations.  The trend indicator looked at the overall improvement or regression of the measure over  time. The racial/ethnic indicator measured whether the gap has widened or narrowed between racial/ethnic groups over time.  A four-item scale (4 = worst outcome, 1 = best outcome) was used to calculate a score for each of the three indicators.  A final composite score, called the Matrix score, was calculated to make standardized comparison among domain-specific measures.  This Matrix score would later be selected as one of the criteria for prioritization in selecting state priority needs. 

The third phase of the secondary analysis was to compile data to report to internal and external stakeholders as issue briefs.  Title V program and epidemiologist staff met routinely to discuss the content of these issue briefs, as well as provide input.   Issue briefs were created for each Title V domain.  The Title V issue briefs introduced demographic information regarding the Title V domain’s MCH population, followed by a comparison of Rhode Island and national Title V measures related to the domain.  The issue briefs also included key data points, as well as major health disparities. 
 

Community & Workforce Outreach  

Survey Collection & Outreach 

MIECHV and MCH program leaders organized an efficient and strategic plan for community and workforce engagement. The initial step was to get a sampling of what population needs were present within each domain. In collaboration with Adolescent, School & Reproductive Health Programs, the MCH needs assessment team released a survey targeted towards RI youth. RIDOH utilized community partners across the state to garner, in total, 188 responses.  In 2019, RIPIN dispersed a survey and obtained 117 survey responses from parents who were supporting children or youth with special healthcare needs. The goal of this survey was to understand the challenges these parents encounter when trying to access care and services for their children.   

October-February 2020, SISTA FIRE distributed surveys for womxn of color within the childbearing age. This survey was aimed at comprehending the unique challenges womxn of color face within their respective Rhode Island communities. It is important to note that data collection for this population was centered within the urban core since most RI communities of color resided within these areas. In total, this survey garnered 200 responses from womxn of color.  Additionally, SISTA FIRE shared their past findings that were drawn from both their birthing story collection and a 2017 community wide survey (approx. 300 responses). In terms of birthing story collection, SISTA FIRE spent 8 months gathering information on that state of maternal health for black womxn and womxn of color in RI.  SISTA FIRE specifically focused on the experiences this community has had at the Women & Infants Hospital during pregnancy, delivery and postpartum. The information that follows in the MCH Population Health Status section is a result of the organization conducting Community Based Participatory Action Research. The goal of this research method is meant to engage those most affected by community issues to conduct research on and analyze the issues, with the goal of developing strategies to resolve issues and envision new solutions.   

During the same time period, ABT Associates supported the production and distribution of a general community survey and health professional workforce survey. This was done to get an overview of what Rhode Islanders and professionals felt were pressing health concerns for the needs assessment’s priority communities. In total, the state received 476 community surveys and 449 professional surveys. ABT Associates analyzed the data and submitted their written findings to the MCH needs assessment team. 

Stakeholder Meetings & Focus Groups 

Once survey collection was completed, informal and formal avenues of contact were utilized in order to outreach to communities and health workforce professionals. In February 2020, the MIECHV and Title V Need Assessment teams and Abt Associates collaborated to host a series of focus groups at the Health Equity Zone Collaborative. The Collaborative is a conference, meeting every other month, that brings together statewide Health Equity Zone leads, local organizations, community activists, and constituents. Conference members were split into smaller focus groups and assigned MCH populations to cover that aligned with their organizational focus. Groups were given MCH issue briefs that gave them a snapshot of their assigned population’s leading and lagging indicators. The review of the briefs was followed by a comprehensive discussion on what the state and local community can do to support the health needs of MCH population groups.  

In parallel to this effort, RIPIN collected input from parents of CSHCNs through holding a focus group, soliciting written stories,  and holding a conference on September 9, 2019, to discuss findings and relevant next steps. The conference allowed parents to share their written stories, express hardships, and give policy recommendations to state policymakers and local implementation agencies. The cumulative results of this outreach and data collection were summarized within a published RIPIN data brief. 

Prioritization  

The process for identifying priority issues was guided by the National Association for County & City Health Officials’ Guide to Prioritization Techniques. The overall process included the following steps: (Step 1) reach consensus on criteria to guide prioritization decisions, (Step 2) convene large group discussions to identify issues in each domain that have potential to be selected as top priorities and review relevant data, and (Step 3) use a rubric to score each potential issue on the criteria identified in Step 1 in order to identify which issues are the highest priority ones for each domain.  

As a first step, Abt facilitated a discussion to determine which criteria should be used to prioritize issues. Together, the team reached consensus on five final criteria to be used in guiding the decision-making process: (1) racial/ethnic disparities; (2) community support/political will; (3) availability of resources/agency capacity; (4) potential for public health influence; and (5) the matrix score (composite score from information about magnitude, trend, and racial/ethnic disparities).  RIDOH staff recognized the need to support Title V’s  racial equity framework, which drove the need to include racial/ethnic disparities as one of the criteria.  The importance of data was a motivating factor in selecting the matrix score, which has been previously calculated in the secondary analysis. 

In the second step, Abt developed a list of all possible priority issues for each domain.  Abt facilitated discussions with RIDOH staff to identify any topics that were potentially missing from the list. The final list identified forty potential state priorities. For each potential priority,  relevant findings (e.g., four statewide surveys with community members, professionals, parents of CSHCNs, and youth, community feedback sessions with Health Equity Zones, state administrative data, focus groups, SISTA FIRE’s data collection with womxn of color) were also shared with RIDOH staff, who were also given an opportunity to explain to the group which issues they felt were highest priority and why. 

Finally, staff used a rubric to score the issues agreed upon during Step 2. One scoring rubric was used for each domain. In the first column of the rubric, the group listed domain-specific issues identified in Step 2 as potential top priorities.  The next columns in the rubric are the five criteria, where participating RIDOH staff select from a three-item scale to quantify the importance for each criterion (1 = least important, 3 = most important).   Once the rubrics were completed by RIDOH staff, Abt collected and tallied the results. 

Strategy Selection 

After identifying the priority issues that RIDOH would aim to address for the next 5 years, we worked to identify strategies for tackling each issue. Because of the pandemic, we were unable to meet in person for this step, so we opted to use an online tool called “Waggl”. Waggl polls were administered to staff from RIDOH and local Health Equity Zones. For each Title V priority issue, 15 respondents used Waggl to (1) add strategies for consideration and (2) vote on these proposed strategies to identify the most promising ones. 

Prior to proposing strategies,  RIDOH staff were asked to consider the following questions: 

•       Is the strategy appropriate for serving diverse populations? Is it culturally and linguistically responsive? 
•       Is it evidence-based? 
•       If it is not evidence-based, is there other reason to believe that this strategy is particularly promising? 
•       Are there resources currently in place to support this strategy? If the resources are not currently in place, how ambitious would it be to identify new resources? 
•       How feasible is it for HEZ communities to roll out the strategy? 

In Exhibit 5 below we present the Waggl findings, organized by the Title V domains and the 1-2 priority issues for each. Specifically, for each priority issue we present: the top five strategies that emerged after participants voted, the total number of strategies proposed, the number of respondents who engaged with the process (i.e., someone who added a strategy, viewed the questions, voted on responses, or viewed the results), and the win likelihood. RIDOH staff reviewed the Waggl results and selected the top two suggested strategies for each MCH state priority need. 

SECTION HEADING: III.C.2.b Findings 

III.C.2.bi MCH Population Health Status 

Women’s/Maternal Health (Preconception, Pregnancy, and Postpartum Health) 

The Preconception, Pregnancy, and Postpartum Health domain section has taken into consideration that the care and outcomes of womxn, children, and families are impacted by the systemic racism, discrimination, unaddressed language barriers, and a lack of culturally responsive providers. The following quantitative, qualitative, and anecdotal information tries to tease out health disparities and the overarching healthcare needs of communities. 

Preconception Health  

The proportion of women who had a preconception discussion with a health care provider decreased from 27.7% in 2012 to 24.8% in 2015. In 2019, 64.5 % of Title X clients were using moderate to most effective family planning methods. There was a worsening trend among women reporting that didn’t exercise or exercised little before pregnancy, from 24.8% in 2016 to 29.4% in 2018. Women less than 20 years old are more likely to experience depression before pregnancy (15.8%) than women 34 years and older (10.4%). 

Health Equity Zone SUD reports there was an emphasis of family planning being coupled with substance use treatment. For instance, in the Olneyville HEZ SUD report, several interviewees noted that substance exposed newborns almost always resulted from unplanned pregnancy.  Many suggested that broader family planning initiatives are needed to be available for women currently in and out of treatment. Examples of increased initiatives include supporting family home visiting agencies, community health workers, and peer recovery coaches to more broadly teach family planning while meeting with their clients.. 

Health During Pregnancy  

While trends have been improving for all racial/ethnic populations, disparities remain in reported unintended pregnancies, with 33.1% of Non-Hispanic Whites compared to 45.6% of Hispanics 45.6%, and 61.9% Non-Hispanic Blacks.  The percentage of short interpregnancy interval (< 18 months) among  RI resident women in 2018 was 26.1%, which is a slight decrease from 26.8% in 2017.  In 2018, Hispanic women were 40% more likely to have a short interpregnancy interval than Non-Hispanic White women.  Moreover, the disparity between both groups has increased from 2014 to 2018. Vital Records data show that 2.3% of women who gave birth in 2018 reported having a previous preterm birth.  Among RI-resident women who have birth in 2018, 7.6% had gestational diabetes and 8.1% had gestational hypertension/preeclampsia. Although the overall trend of cigarette smoking during the last 3 months of pregnancy has decreased from 40.0% in 2018 to 36.0% in 2018, pregnant women with disabilities has a higher percentage (13.8%) smoking during pregnancy than pregnant women with no disabilities (5.8%).  The decreasing trend in cigarette smoking during pregnancy may not account the likely increasing trend in electronic cigarette use. In 2019, 84.7% of pregnant women who gave birth received prenatal care beginning in the first trimester, a slight increase from 82.7% in 2018.   

The RIDOH community survey reports that participants chose mental health (e.g., postnatal depression or anxiety (29%) and culturally responsive pregnancy/postpartum education and care (12%) as the top issue related to pregnancy and birth that the DOH should focus on to support families. Similarly, the SISTA FIRE Womxn of Color survey found that participants ranked the following as the three most important things to be addressed to improve the health and wellbeing of parents/caregivers: 1)Mental health (68%), 2) Pregnancy/Postpartum Education & Care (41%), and 3) Violence & Abuse in Relationships (40%). For reference, there are a variety of social determinants of health, such as housing and food insecurity, structural racism, etc., that contribute to mental, emotional and toxic stress. These survey results show a need for the RIDOH to invest in supporting the mental, emotional, and physical health of caregivers, especially through prenatal care and education.   

RI Health Equity Zones (HEZ) completed community and stakeholder outreach to inquire about and report on Substance Use Disorder, especially as it pertained to substance exposed newborns (SENs). HEZ SUD reports revealed  a couple of barriers to pregnant women accessing support included  social stigmatization and a fear of having their children taken away by DCYF. Some pregnant individuals did continue to face stigma even as they enrolled in medication assisted treatment (MAT). For example, a pregnant women  in recovery from opioid use disorder and receiving methadone treatment must not only continue to receive methadone but must also receive a higher dosage of it because her growing baby will metabolize part of the drug. Family members who do not understand how methadone treatment affects unborn babies will sometimes pressure women to stop treatment and accuse them of harming their unborn child.   

Delivery and Postpartum Health  

In 2019, 27.2% of women had cesarean delivery with a low risk first birth.  The 2019 maternal morbidity rate (including blood transfusions) was 271.4 per 10,000 delivery hospitalizations, which is an increase from 242.0 per 10,000 In 2018, Black women (382.7 per 10,000 delivery hospitalizations) had a higher maternal morbidity rate than White women (224.8 per 10,000). Racial/ethnic disparities can also be seen among delivery hospitalizations regarding blood transfusions (Black women: 293.9 per 10,000; White women: 141.2 per 10,000) and hypertensive disorders (Black women: 520.4 per 10,000; White women: 288.7 per 10,000).  According to Pregnancy Mortality Surveillance System data, there were 13 pregnancy-associated deaths in 2012-2016.  PRAMS data show that the percentage of women reporting symptoms of postpartum depression was 12.3% in 2018, a slight increase from 10.9% in 2014.  In 2018, women who identified as Other reported 17.5% reporting postpartum depressive symptoms compared to NH White women with 11.0%. An even larger disparity in postpartum depression existed between women with disabilities (32.9%) and women with no disabilities (10.5%). 

We will view SISTA FIRE’s key learnings through the overarching lens that discrimination and racial injustice permeate all corners of our society. Although SISTA FIRE draws on findings from WIH, these issues are present within various healthcare settings, hospitals, and practices across the state. SISTA FIRE, found three overarching issues that WOC wanted WIH to address in order to develop high quality delivery and postpartum care: 1) Translation & Interpretation, 2) Trauma Informed Care, and 3) Informed Consent. During triage, inpatient services, and discharge, WOC, especially non-English speaking WOC, felt that they were not properly communicated to, especially in their preferred language or dialect, about their condition, treatment, or about postpartum community resources and services. Even without a language barrier many WOC felt that their needs, pain, and suffering was not properly acknowledged, empathized with, and treated during their hospital stay. For instance, one respondent felt ignored when she questioned her repeated  examinations. She viewed the experience as violating and invasive. She wasn’t asked permission if doctors could use her as a practice patient and bring in multiple medical students at the teaching hospital. This story underlines the need for birthing hospitals to adequately communicate with their womxn of color patients in a culturally and linguistically responsive manner about their condition.    

WOC often felt judged and nervous by staff asking personal questions, under the assumption that patients weren't responsible parents. Due to this, patients often did not want home visiting services. Patients also expressed a real fear that DCYF would be contacted and that mothers would be separated from their children based on stereotypes they felt hospital staff held about womxn of color mothers. “This was my first pregnancy, so I didn't really know.... I’m asking the nurses, and they are like ‘Yeah, she’s fine, it is kind of weird that her eyes are open, but she’s good.’.... Then the doctors start asking me questions, ‘Oh do you have any kind of infection or disease that we don't know about?’ ...They kind of made it seem like I was hiding something, and this is why my daughter is not showing the typical behavior for a newborn. So I felt like they were blaming me.” This quote underlines the need for birthing hospitals to create supportive and non-judgmental atmospheres that center trauma informed care of patients. 

Perinatal/Infant  

Poor Birth Outcomes  

In 2019, there were 786 infants who were born with low birth weight (< 2,500 grams), this represents 7.7% of all infant born.  In the same year, 95.4% of all very low birth weight (< 1,500 grams) infants were born in a Rhode Island Level III NICU hospital. Racial disparities are also observed in low birth weight babies.  The preterm birth (< 37 weeks gestation) rate in Rhode Island is 9.4% in 2019. This represents an increase from the preterm birth rate of 8.2% in 2017.    The difference in between Non-Hispanic White (8.0%) and Non-Hispanic Black (11.1%) births is 3.1 per 100 births.  Provisional data for 2019 indicate that the infant mortality rate in RI is 5.5 deaths per 1,000 live births. The Black/White infant mortality ratio for 2017-2019 is 4.2, with Non-Hispanic Blacks having infants having a mortality rate of 13.0 per 1,000 live births compared to that of Non-Hispanic White infants with 3.1 per 1,000 live births. 

Caregiver Relationship with Infant 

In 2019, home visitors observed 72.3% of caregivers interacting with their children using a validated tool. In 2017-18, 67.6% of caregivers are able to handle the day-to-day demands of raising children very well, which increases to 73.0% when raising children ages 0-5.  However, the number of caregivers able to handle the demands of raising children ages 0-17 with special healthcare needs very  well is statistically lower (49.7%) than caregivers raising children without special healthcare needs ages 0-17 very well.  The mental/behavioral health of a women may impact the ability to care for their child(ren).  In 2018, after giving birth, 25.4% of women responded that they often or sometimes felt down, depressed, or hopeless. 

Substance Exposed Newborns  

Hospital discharge data in 2019 show that 86 newborns were discharged with neonatal abstinence syndrome. This represents a rate of 89.4 per 10,000 newborn hospitalizations, a decrease from the NAS rate of 110.6 per 10,000 in 2018. Hospital discharge data in 2019 show that 86 newborns were discharged with neonatal abstinence syndrome. This represents a rate of 89.4 per 10,000 newborn hospitalizations, a decrease from the NAS rate of 110.6 per 10,000 in 2018. Both in HEZ SUD reports and SISTA FIRE Key Learnings parents of SENs report being stigmatized and judged by medical care providers and hospital staff.  

The RIDOH community survey showed that participants chose mental health (e.g., postnatal depression or anxiety (29%) and culturally responsive pregnancy/postpartum education and care (12%) as the top issue related to pregnancy and birth that the DOH should focus on to support families. Similarly, the RIDOH & SISTA FIRE Womxn of Color survey found that participants ranked the following as the three most important things to be addressed to improve the wellbeing of newborns/infants: 1) Support new moms in caring for their infant (social, emotional, & financial), 2) Screening newborns for health conditions and diseases, and 3) Bonding and attachment. 

Young mothers of SENs interviewed by the Pawtucket & Central Falls HEZ also reported poor treatment when going to prenatal checkups, when arriving in the hospital to give birth, at the hospital after birth, and when visiting their baby if s/he is going through withdrawal. One woman shared her experiences of giving birth twice at Women and Infants Hospital. The first time she successfully hid her addiction to opioids and alcohol from hospital staff. She remarked that she was treated “like a princess” and given a special birthing suite. The second time she gave birth, she was “deep in the throes of her addictions” and it showed on her face, her body, and in her comportment. She arrived at the ED and was left alone on a gurney in the waiting room for hours. When she was finally attended to she was fully dilated and ready to give birth. She was supposed to have had a C section but by then it was too late. Overall, these experiences show a need for a reduction of stigma and more comprehensive and compassionate care for substance using mothers giving birth.  

Child Health 

Children’s Health Data  

NSCH 2017/18 data also show that 74.1% of children were continuously and adequately insured in the past year.  Furthermore, 53.1% of children without special healthcare needs meet the criteria of having a medical home.  According to the 2018 National Immunization Survey, 75.1% of children in RI ages 19 to 35 months were fully immunized.  RI is ranked high among other states in the nation for immunizations of toddlers. However, disparities exist among certain  health conditions. In 2017/18, 19.3% of Hispanic children are reported to currently have asthma compared to only 5.6% of Non-Hispanic White children.  Also, 25.1% of Hispanic children ages 10-17 were obese compared to 8.8% of Non-Hispanic White children ages 10-17.   

Child Literacy 

Early literacy is an important precursor for developing a foundation to school readiness.  In 2018, 17.9% of postpartum women reported not reading or looking at book with their baby in the past week.  Disparities exist among race/ethnicity, where 25.4% of Hispanic postpartum women were not currently reading to their infant compare to 15.0% of Non-Hispanic White postpartum women.  In 2017/18, 49.6% of family members were reading to their child ages 0-5 everyday.  However, the disparity remains between Hispanic family members reading to their child ages 0-5 (29.6%) compared to Non-Hispanic White family members reading to their child (59.1%).  Family Visiting Program in 2019 supported 2017/18 NSCH data, reporting that 49.3% of children were read, told stories, or sung songs by family members every day. 

Community Surveys 

The RIDOH gathered information from  community, professional, and womxn of color specific surveys. In the dispersed RIDOH community and Professional surveys, both sets of survey participants ranked the following as their top issue related to education that the RIDOH can focus on to better support families: 1) Schools that are safe, healthy, and high quality, & 2) Child care that is affordable and high quality. Similarly a SISTA FIRE survey found that 50% of the womxn of color surveyed thought screening for milestones and healthy development were important to improving health and wellbeing of young children (1-4 years old). Surveyed womxn of color also ranked the following as their top three important things to improving the health and wellbeing of children (5-12 years old):  1) Social & Emotional Health (62%) , 2) Bullying (43%), and 3) Nutrition & Physical Activity (37%).  

These current survey findings are further supported by prior RIDOH community engagement completed for the Preschool Development Grant. A majority of the surveyed caregivers reported access to affordable childcare as their priority (44%). Among families identified as experiencing significant stressors by the state, over 1/3 stressed a need for more “information about available programs for my family.” Families with young children and special needs and/or foster care indicated a particular need for “information about available programs for my family” and “childcare close to home”. Cumulatively, these surveys show that there is still a need for the state to support the overall development and social and emotional health of children, especially those at a particularly young. 

Adolescent Health 

Healthcare and Immunization 

According to the NSCH 2017/18, 75.0% of adolescents ages 12 to 17 received a past year preventive medical visit.  In 2018, NIS reports that 89.3% of teens ages 13 through 17 have received at least one dose of the HPV vaccine, a slight increase from 88.6 in 2017.  RI has the highest rates of HPV vaccination in the US. Additionally, 78.0% of adolescents were vaccinated against seasonal influenza in 2017/18.  Other adolescent immunizations were also high in 2018 with 98.7% receiving at least one dose of the meningococcal conjugate vaccine and 96.3% receiving at least one dose of the Tdap vaccine, both increases from 2017. Seasonal influenza, meningococcal, and Tdap vaccination in RI exceeds U.S. rates among adolescents. Rates of chlamydia and gonorrhea have increased by 25% and 133% respectively from 2014 to 2018 among youth ages 15-24.  

Behavioral/Mental Health 

There was a slight decrease in bullying in school property among high school students from 17.3% in 2017 to 16.4% in 2019. LGB high school students continue to be more likely to be bullied on school property (37.2%) than heterosexual high school students (13.0%), as well as more likely to be electronically bullied (LGB HS students: 26.5%; heterosexual HS students: 10.9%). Suicide ideation is an important issue which the MCH Program monitors.  YRBS 2019 data report a slight decrease among high school teens who seriously considered committing suicide from 13.6% in 2017 to 12.1% in 2019, but a statistically significant increase from 9.9% in 2013.  Disparities exist between 16.6% of Non-Hispanic Black teens who seriously considered committing suicide compared to 10.6% of Non-Hispanic White teens in 2017. In 2019, the prevalence of having attempted suicide was higher among gay, lesbian, and bisexual students (36.5%) than heterosexual (9.7%) students.  The percentage of binge drinking (11.2%) among high school teens in 2017 has dropped slight in 2019 (10.7%). 

In 2019, RIDOH Title V and Adolescent Reproductive Health staff collaboratively outlined and administered a youth survey. In the survey, youth ranked the following as their top four priorities that should be addressed to improve the health and well-being of teens: 1) Mental Health (54%), 2)  Safe & Healthy Schools (53%),   3) Suicide Prevention (37%), & 4) Healthy Relationships (with adults, friends, and partners) (36%).  Similarly, 32% of teens ranked Mental health(Anxiety, depression, etc.) as one of their top four things that concerned them on a day to day basis. Rhode Island and SISTA FIRE collaboratively distributed a survey that asked womxn of color the top three important things that need to be addressed to improve the health and well-being of adolescents (12-17 years old). The top priorities that rose to the top are as follows: 1) Sexual Health (58.9%), 2) Mental Health (45.4%),& 3) Social & Emotional Health (40.2%). 

Similarly, womxn of color ranked the top three important things needed to be addressed for the health and well-being of young adults (18-24 years old). The following three priorities were overwhelmingly chosen: 1) Mental Health (64.2%), 2) Social & Emotional (44.9%), and 3) Sexual Health (42.6%). 

All three surveys overwhelming align to show that there is a need to support the mental and behavioral health and development of youth. This theme was further fleshed out during a youth focus group the Title V needs assessment team held with the Youth Advisory Council (YAC). The youth agreed that mental health was an immense issue among their peers that encompassed substance and drug use and mental illness. Youth participants did see substance use, vaping, and drug use occurring within social scenes and gatherings. However, all agreed that much of the persistent drug use, substance use, and vaping they saw was tied to youth masking or self-treating underlying social and emotional issues. In all, Youth focus group participants emphasized that mental illness should be destigmatized and schools and providers should find more educational and supportive avenues to help bolster youth mental health.  

Children with Special Health Care Needs 

In RI, according to 2017/18 NSCH, 20.3% of RI children ages 0-17 years have at least one special health care need, compared to 18.5% in the nation.  Among children 3-17 years old, the prevalence of ADD/ADHD is 10.0%.   It is also estimated that the current prevalence of autism, Asperger’s Disorder, or other ASD in RI is 2.2%.  

Medical Home/Care Coordination 

Several essential criteria are required to be considered a medical home.  It includes being accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.  In RI, NSCH 2017/18 data report that 38.4% of children with special healthcare needs (CSHCN) had a medical home, compared to 53.1% of children without special health care needs. This RI CSHCN measure does not meet the Healthy People 2020 target objective of 54.8%.  In 2017/18, only 40.5% of CSHCN received effective care coordination. A larger combined sample size is needed to better understand families and CSHCN in receiving effective care coordination.   In 2017/18, 68.2% of CSHCN are continuously and adequately insured in RI.  

Impact on Families 

RI continues to study and monitor the financial impact that many families with CSCHN experience.  The NSCH 2017/18 reports that 8.7% of families with CSHCN have had problems paying for any of the child’s medical or health care bills in RI, compared to 18.1% of families with CSHCN nationwide. NSCH also reports that 14.9% of RI families of CSHCN had a family member stop working or cut down hours of work because of the child’s health or health conditions, compared to 1.5% families of children without special health care needs in 2017/18. 

Overall, parents/guardians highlighted that increased coordination of care across agencies and programs is essential to better address the needs of children with special healthcare needs and their families. In general, they agreed there are some high-quality providers in the state, but limited connection and communication between programs. For instance, a desire for better coordination between the RIDOH and RI Department of Education came up as a way to help make services more seamless for CSHCNs. Overall, there was consensus that better coordination between agencies and programs would reduce overall confusion and travel burden on families. 

The RIDOH in collaboration with the Rhode Island Parent Information Network (RIPIN) surveyed, interviewed, collected stories, published a issue brief, and held a conference that centered the voices of parents of CSHCNs. Surveyed parents and caregivers reported the following three overarching areas where they felt were challenges to accessing care: 1) Mental & Behavioral Healthcare, 2) Neurology & Neuropsychology, and 3) In-home Nursing and Respite Care. Overall, parents/guardians reported that they struggled to obtain timely  services for their children, especially as it pertained to these three key areas. Families, especially those on Medicaid, were frustrated by the limited rate of  insurance acceptance by providers and programs in RI. Some families do report trying to explore and access more timely services out of state but face significant resistance from insurance providers. Additionally, many noted that it was hard to hire and retain qualified home-based caregivers and therapists due to the general applicant pool lacking expertise related to complex pediatric conditions due to low and noncompetitive salaries  and  insurance reimbursement rates. This issue is further underlined by the RIDOH and SISTA FIRE survey showing the following answers, assistance with the activities of daily life (46%) and parent support and respite care (39%), as their top two for improving the health and wellbeing of children with special health care needs. 

Cross/Cutting Systems Building 

Social Determinants of Health 

Throughout the Title V Needs Assessment the state has collected quantitative, qualitative, and anecdotal information on how social determinants of health and structural inequities impact the outcomes of all Rhode Islanders. The SISTA FIRE Maternal Child Health Survey found that WOC ranked the following as what they were most concerned on a daily basis: not enough jobs that pay a living wage or have a career path (52%), paying monthly bills (41%), and wealth creation (34%). These daily stressors and needs of WOC do contribute to emotional, mental, and toxic stress. SISTA FIRE Survey found that 8% of Womxn of Color (WOC) responded always experiencing racism in the healthcare setting and 49% WOC experienced racism sometimes. Additionally, there were a higher unawareness of certain types of state programming and services such as: free breastfeeding support (41% unaware), free insurance during pregnancy (43% unaware), and home visiting (45% unaware).  

Health Equity Indicators 

BRFSS 2018 data show that 78.3% of Hispanics report visiting their doctor in the past year compared to 86.0% of Non-Hispanic Whites. The community resilience indicator measures Health in All Policy by calculating the percentage of low- and moderate-income housing.  This indicator shows that cities such as Woonsocket (15.9%), Providence (14.9%), and Central Falls (11.2%) in 2016 had a higher percentage of low- and moderate-income housing than the statewide estimate (8.2%).   Housing burden, a socioeconomic indicator, is calculated by identifying the percentage of cost-burdened renters and owners for RI cities and towns.  This composite metric from 2019 HousingWorks RI Factbook’s data showed that the communities with the highest total burden are Central Falls (55%), Providence (45%), and Pawtucket (42%). In 2018, nearly 4,000 women, men, and children experiencing homelessness sought shelter in RI. This number does not include those using RI’s recently implemented coordinated entry system, which aims to triage households experiencing housing insecurity and “divert them from ending up in limited shelter beds; and the more than 1,500 RI students, who are measured by a different standard, but do not have a place to call home—a nearly 24 percent increase from the prior school year.”1 In 2019, the graduation rate among high school students who completed 4 years (2015/16 freshman class) was 83.9%, which is an increase from 2016 (2012/13 freshmen class) with 82.8%. 

Section Heading: III.C.2.bii Title V program capacity  

III.C.2.bii.a Organizational Structure  

Organizational Structure 

RIDOH is the lead RI agency responsible for addressing maternal and child health needs throughout the state. Section 23-13 of the RI General Laws gives RIDOH broad authority for administering and overseeing Title V MCH services. RIDOH is located within the state's Executive Office of Health and Human Services (EOHHS), a cabinet agency that reports directly to the Governor.  Because RIDOH is the only health agency in the state (there are no local or county health departments), it has the unique ability to build capacity and coordinate direct partnerships with other state agencies, institutions, organizations, and communities.  The Title V Program is part of the Health Equity Institute (HEI).  The HEI is strategically located in the Office of the Director.    

It is the responsibility of the RI MCH Program to ensure that that MCH initiatives, within RIDOH and throughout the state, are coordinated and family-centered for mothers, children, CSHCN, and families.  The Title V program is managed by the State MCH/CSHCN Director, the MCH Program Manager, a MCH leadership team, and a MCH policy team.  The MCH policy team meets monthly to discuss progress on Title V strategies, share relevant information and resources, and improve alignment and collaboration across RIDOH programs.  Various RIDOH programs take the lead on different MCH strategies as indicated in the organizational chart.   

Emerging Public Health Issues 

Covid-19 Pandemic 

On March 2, 2020,  Rhode Island reported its first case for SARS-CoV-2 (Covid-19), a highly infectious coronavirus disease that primarily causes respiratory illness.  On March 11th, the World Health Organization has declared Covid-19 a pandemic.  Since then, Rhode Island has reported 21,683 confirmed cases of Covid-19 as of August 31st, of which 1,046 have resulted in death.  RIDOH has activated the Incident Command System to respond to the Covid-19 crisis, working with Governor’s Office and other state agencies.  The Covid-19 pandemic has implications on the MCH populations served and has brought attention to inequities among vulnerable populations and communities.  Although most MCH Program staff are concurrently activated to respond to the pandemic, MCH areas and populations affected by the pandemic are being addressed. 

As of June 17, there were 107 pregnant women in Rhode Island who were positive for Covid-19, of which there were no reported deaths.  An MMWR report found that pregnant women were more likely to have severe illness than non-pregnant women.  To date, there are no newborns infected with Covid-19. To increase knowledge in the potential relationship between Covid-19 and pregnancy outcomes, RIDOH is collaborating with the CDC to submit Covid-19 data linked to Vital Records. To protect their clients and workers, RIDOH programs such as Family Visiting and WIC are offering telehealth services to pregnant women, postpartum women, and their families.  Of the known age demographics of confirmed Covid-19 cases, 2% represent children ages 0-4, and 9% represent ages 0-18. Of the known age demographics, only 2% of confirmed cases represent children ages 0-18.  Rhode Island reported a pediatric case with multi-systemic inflammatory syndrome, although the prognosis was good and its proven to be extremely rare.  Although transmission of Covid-19 among daycare centers seemed worrisome, an MMWR report showed that there is limited transmission of child day care sites in RI due to high compliance with  

With the statewide shutdown earlier in the pandemic, there has been delayed or missed healthcare for many MCH populations.  Most notable are the children population, where immunizations have dropped beginning in April 2020.  Overall, 24% fewer vaccine doses were given in March to July 2020 compare the same time period in 2019. The decline was greater (43%) for older children ages 7 or older and Black children (26% decline).  Vaccines for Covid-19 will be monitored through the Rhode Island Child and Adult Immunization Registry (RI-CAIRT). Childhood lead screening resulted in a steeper decline, where overall 43% fewer children were screened for lead poisoning in March to July 2020 compared to the same time period in 2019. Covid-19 has disproportionately impacted several municipalities in RI, where the case rates are much higher than the statewide average.  The Health Equity Zones (HEZs) offer a ready-made infrastructure to support immediate and longer-term efforts in High Density Communities (HDCs) most affected by the Covid-19 crisis. 

 Drug Overdose 

The goal is to reduce opioid overdose deaths by one-third within three years by addressing four key strategies: treatment, overdose rescue, prevention, and recovery.  Although there is still a lot of work to do, between 2016 and 2018, RI overdose deaths decreased by 6.5 percent.  In 2019, the Taskforce updated its strategic action plan.  The new plan keeps the strategic pillars--prevention, rescue, treatment, and recovery, and puts a new focus on using data to inform response, engaging diverse communities, changing negative public attitudes on addiction and recovery, incorporating harm-reduction principals, and confronting the social determinants of health.  RIDOH has emphasized the importance of community-driven response to the opioid epidemic.  In 2019, 34 of RI ’s 39 municipalities developed their own local overdose response plan, aligned with the statewide plan, and twenty of those communities have begun implementation and evaluation of evidence-based or innovative initiatives. For more updated data on the opioid epidemic and local resources see PreventOverdoseRI.org. 

III.C.2.bii.b Agency Capacity 

The RI Title V Program works closely with RIDOH programs, other state agencies and community partners to promote and protect MCH populations, including ensuring a statewide system of comprehensive, community-based and family- centered care.   RIDOH is the sole public health entity in RI. There are no local health departments.  As such, RIDOH relies heavily on partnerships to advance its work throughout the community.  These partnerships include advocacy groups, colleges and universities, community-based organizations, federally qualified health centers, health plans, Medicaid, professional organizations (RIAAP, RIACOG, etc.), committee and coalitions, and other state agencies. RIDOH MCH staff convene and participate in over 70 committees or advisory boards. Recent efforts have been focused on building infrastructure at the community level through the Health Equity Zone initiative.  This effort promotes collaboration to support public health at the community level. 

As part of its needs assessment, RI Title V surveyed community members and MCH professionals.  476 community members and 449 professionals filled out all or some of the survey. Reponses related to issues identified by respondents provide some insight into the extent of collaboration within the Rhode Island MCH community and capacity to provide and assure services within each population health domain.  

(i) Capacity to provide and assure services within each of the five population health domains. 

The needs assessment survey of community professionals showed good collaboration among the organizations that serve the MCH populations in each domain.  However, about a third of professionals indicated that additional collaboration was needed with various types of organizations in order to better support families. Limited staffing and time were cited as barriers to collaboration, and 40% indicted that limited availability of services in the area was a barrier. Transportation, system navigation, childcare, and waitlists were identified as leading barriers to services. The priorities identified by the professionals mirrored those of community members.  Mental health was the leading priority, followed by culturally responsive pregnancy/postpartum education and care. Money/employment and housing, affordable high quality child care and safe, healthy, quality schools also were identified as priorities. 

(ii) RI Title V does not provide direct services to CYSHCN.  RI’s Title V CSHCN program enjoys a collaborative working relationship with RI Medicaid and RI Office of Rehabilitation Services.  Title V CSHCN participates on advisory committees with consumers and state leaders to ensure Medicaid services and supports are organized and comprehensive.  Title V CSHCN leadership sits on the Medicaid Managed Care Advisory Committee for CSHCN.   

III.C.2.bii.c MCH Workforce Capacity   

There are over 100 FTEs employed by RIDOH who are working on MCH related programs and services.  This includes staff that provide planning, implementation, evaluation, and data analysis.   

MCH leadership:  

Dr. Nicole Alexander-Scott - Director of Health  

Deborah Garneau– Director, Health Equity Institute and Title V/CSHCN Director  

Jaime Comella – Program Manager, Title V MCH Program (temporarily assigned to COVID)  

Aidea Downie-- Coordinator, Title V Needs Assessment and MCH Disparities Specialist  

Colleen Polselli – Program Manager, CYSHCN Program  

Carol Hall-Walker-- Division Director, Division of Community Health and Equity  

Dr. Ailis Clyne– RIDOH Physician Consultant and Pediatrician (temporarily assigned to COVID)  

Blythe Berger – Chief, Center for Perinatal and Early Childhood  

Kristine Campagna – Deputy Chief, Center for Perinatal and Early Childhood (temporarily assigned to COVID)  

Sam Viner-Brown – Chief, Center for Health Data and Analysis  

Ellen Amore – KIDSNET Program Manager, Center for Health Data and Analysis  

Ana Novais, previous Title V Director, has accepted a new position in state government as the Assistant Secretary of the Executive Office of Health and Human Services (EOHHS).  Although no longer at RIDOH, her new role and long-standing relationship with MCH leadership will no doubt continue to be an asset to MCH.  RIDOH also directly supports the MCH workforce through many community contracts including Family visitors, peer resource mental health specialists, parent consultants (12 work at RIDOH and 27 work in community settings), community health workers, safety-net clinical providers, youth advisory groups, sexual health counselors, breastfeeding lactation consultants, and prevention educators.    

As Title V worked through the 5-year needs assessment process, an understanding of their workforce composition and learning needs was essential to gauge strengths and areas of growth. The MCH Navigator prepared this report of professionals in Rhode Island who have taken the online self-assessment in 2019 to serve as a snapshot of workforce demographics and knowledge/skills across the MCH Leadership Competencies.     

The MCH Navigator provided a self-assessment to MCH  as an opportunity for professionals to reflect on competency-based strengths and areas to grow in order or identify learning needs and reinforce new skills in order to improve performance. The self-assessment analyzed mean knowledge and skill scores for each of the 12 MCH Leadership Competencies for Rhode Island. In line with national data trends, cultural competency had the largest gap in knowledge and skills (where knowledge is higher than skills), and policy has the lowest knowledge and skills scores across competencies. Overall, a majority of RIDOH Title V staff have multiple years of experience and a range of competencies and skills that complement Title V’s mission and goals. 

Family Centered Services 

A long-standing tenant of RI’s MCH Program is family, youth, CSHCN, and consumer representation and engagement at all levels of planning through implementation.  RIDOH has partnered with the local chapter of Family Voices of the RI Parent Information Network to engage, train and employ families of CYSHCN within the RI system of care.  Family liaisons that are hired, trained, and certified as community health workers are supported in RIDOH’s CYCHCN program, WIC, newborn screening programs, birth defects program, centralized communications, family planning, immunization, and family home visiting.  RIDOH also convenes an active Youth Advisory Council that meets monthly, engages in policy development, and assists in the implementation of RIDOH programs.  MCH strategic planning regularly includes families who have received services. 

III.C.2.biii Title V program partnerships, collaboration, coordination  

Partnerships, Collaboration, and Coordination 

The RI MCH program is a consistent leader in maternal and child health policy and programs.   RIDOH staff champion the interests of mothers and children statewide in over 70 committees and boards in which they participate in or convene.  A full list of these committees can be found in the supporting documentation section of the report and is called “2019 RIDOH MCH Partnerships and Collaborations”. 

Identifying priority needs and linking to performance measures 

Below is the summary table with the top two MCH priorities by MCH domains conducted by the internal prioritization sessions: 

*Chosen MCH state priorities for 2021-2025 

The highest MCH state priorities were selected based on scoring from five criteria: (1) racial/ethnic disparities; (2) community support/political will; (3) availability of resources/agency capacity; (4) potential for public health influence; and (5) the matrix score (composite score from information about magnitude, trend, and racial/ethnic disparities). These priorities were selected based on the input from various professional and community voices that stressed the importance of addressing racial/ethnic disparities.  The ability to drive change based on current workforce capacity resources guided the selection process.  MCH leadership also decided to potentially include the second highest priority for each domain based on consensus.  In this case, the Title V Program included improving prenatal health as an additional state MCH priority because of the importance of the inter-related work among RIDOH programs that focus on prenatal health issues such as oral health, substance use, and behavioral/mental health. 

Below is a table of the seven MCH state priorities linked to Title V performance measures.