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CROSS-CUTTING/SYSTEMS BUILDING DOMAIN SUMMARY/OVERVIEW FY22 ANNUAL REPORT

 

DOMAIN CONTRIBUTORS

 

Adolescent Health Program– Division of Child and Family Health - Repro Health Unit

Newborn Screening Program - Division of Child and Family Health

Local Health Districts

 

DOMAIN OVERVIEW

 

YOUTH ADVISORS:  Adolescent Health Program’s Youth Advisors provide expertise, guidance and feedback on current and future public health initiatives. 

 

NEWBORN SCREENING PROGRAM:  The Virginia Newborn Screening Program includes the Dried Blood Spot (DBS) Newborn Screening, Early Hearing Detection and Intervention (EHDI), and the Virginia Congenital Anomalies Reporting and Education System (VaCARES) Birth Defects Surveillance (BDS) programs.  The Critical Congenital Heart Disease (CCHD) pulse oximetry screening program is under the BDS program.  Special revenue funds from the Division of Consolidated Laboratory Services (DCLS) sustain the DBS program. Other programs receive CDC and HRSA funding.  Title V funds provide partial salary and special project support.

 

LOCAL HEALTH DISTRICTS:   The Commonwealth is divided into 35 Local Health Districts (LHD) which provide direct and population-based services and support tailored to the specific community needs. 

 

STATE ACTION PLAN UPDATES

 

 

	PRIORITY 1   Community, Family, & Youth Leadership:  Provide dedicated space, technical assistance, and financial resources to advance community leadership in state and local maternal and child health initiatives
OBJECTIVE	By 2025, increase equity in VDH’s public health initiatives by incorporating youth voice in the development, planning, and management of public health initiatives that impact young people
PERFORMANCE MEASURE	SPM 2: Cross-Cutting (Youth Leadership): Develop and sustain the Virginia Department of Health Youth Advisor Program

 

 

Strategy 1:   Hire two part-time Youth Advisors to provide expertise, guidance and feedback on current and future public health initiatives; Fund regional system that incorporates numerous and diverse youth voices into public health in Virginia

 

During the FY21 reporting period, VDH’s Adolescent Health team laid the foundation for its Youth Advisor Program. VDH hired two part-time Youth Advisors, and VDH’s Adolescent Health Coordinator and Youth Advisors spoke with other states, community stakeholders, and partner programs to gain insight about possible program models. The team decided on a two-pronged approach: 1) The General Body Meetings would be open to any high school aged youth in Virginia and would focus on various public health topics, and 2) The Executive Board (E-Board) Meetings would include a small group teens who demonstrated the interest and capacity to engage in public health program planning and implementation. Initially, the Adolescent Health Team believed that regional councils would be the best approach to ensuring representation across the Commonwealth, but has decided that regular virtual meetings open to all youth would be a more efficient and effective approach. The Youth Advisory Councils convened  during FY22.

 

                                 

 

 

 

	PRIORITY 2   Racism as a root cause:  Explore and eliminate drivers of structural and institutional racism within OFHS programs, policies, and practices to improve maternal and child health
OBJECTIVE	By 2025, provide dedicated space, technical assistance, and learning opportunities that advance racial equity across MCH workforce
PERFORMANCE MEASURE	SPM 3:  MCH Workforce Development:  Develop and strengthen MCH partnerships that address racial equity

 

Strategy 1:  Engage with Urban Baby Beginnings in AMCHP’s Healthy Beginnings with Title V:  Advancing Anti-Racism in Preterm Birth Prevention – Learning and Practice Cohort

 

In July 2021, AMCHP launched an 18-month capacity building project that brings teams from six states together as a cohort to learn about and practice dismantling racism in state health department policies and practices.  The goal of this project is to build transformational partnerships between state MCH/Title programs and CBO’s.  Virginia is one of six state teams selected to participate in this learning and practice cohort, alongside Urban Baby Beginnings, Virginia’s leading non-profit that provides outstanding community support services specifically for pregnant and parenting families in Virginia. 

 

There are currently five MCH Team members who participate in the cohort alongside Urban Baby Beginnings – OFHS Director, Title V Director, Resource Mothers/State Doula Certification Coordinator, MCIEHV Director, and the Maternal Mortality Programs Manager alongside the Executive Director of Urban Baby Beginnings.

 

The monthly learning and practice cohort meetings and Mural Board activities stepped each team through a decision making process designed to direct each team towards a strategic area on which to focus for the remainder of the cohort. Virginia’s team chose:  Restructure Title V funding requirements to support community-based organizations and interdisciplinary perinatal providers with an anti-racist, equity-centered, reproductive justice framework.   Through this strategy, Virginia’s team further identified that workforce development for Virginia’s doula community was critical, especially in light of the recent Medicaid doula benefit.  A shared work plan including action steps was developed, and the group will advance the work beyond the January 2023 end date for AMCHP support. 

 

The major focus on this workgroup will be to discover and implement collaborative approaches to develop, strengthen, and support the doula workforce in Virginia, including:  Increasing opportunities for the individual doula seeking training, certification, and Medicaid reimbursement for services; strengthening doula collaboratives wishing to expand their services across Virginia’s pregnant and birthing population who receive Medicaid – including coordination with local health districts; and enhancing and empowering the statewide doula community-at-large through community-driven creation of statewide governing organization.

 

Strategy 2:  Partner with Blue Ridge Health District and Birth Sisters of Charlottesville in CityMatCH Alignment for Action Learning Collaborative

 

The Blue Ridge Health District and Birth Sisters of Charlottesville, a doula collective supporting BIPOC mothers, is one of eight teams selected national for the CityMatCH Alignment for Action Learning Collaborative (AAC), a two-year initiative, which began in March 2021, and will continue through March 2023.  Title V leadership team provides consultation and partnering to assist in their strategic planning of community-led efforts to address racism and implicit bias in the Charlottesville maternal and child health care community, including OB/GYN, Family Medicine, Pediatric providers and healthcare organizations. This dynamic team is composed of three Title V/MCH Team members, two Blue Ridge health district team members, two Birth Sisters of Charlottesville members, a UVA Sociology PhD candidate and a UVA student intern.

 

This Team meets weekly, and receives monthly TA support from CityMatCH. The Team plans to work across three domains:

• Create a method by which the black woman’s birthing experience is shared back to the medical community to evoke process/systems change
• Explore methods by which Black medical providers, including nurses, midwives, pediatricians and OB/GYN providers, who train at University of Virginia will remain and serve the Black birthing community or methods by which new Black providers can be recruited and retained
• Serve as a clearinghouse for information and awareness regarding black maternal mortality

 

From the onset of the Learning Collaborative Team, one strategy centered around planning, preparing, and launching a virtual event called “Listening to the Living: Centering Black Women’s Birth Experiences”.  In celebration of Black Maternal Health Week, the event was held on April 12, 2022.  The 2-1/2 hour agenda featured Dr. Arthur James, a National Leader in birth equity, as the Keynote Speaker.  Patrice Wright, a Sociology PhD Candidate at University of Virginia, shared her research findings regarding race, culture, and inequality in reproductive health.  A panel of Charlottesville care providers, including the Executive Director of Birth Sisters of Charlottesville.  The most significant piece to this event, however, were the shared stories from three Black Women, all residents of Charlottesville, who were willing to share their birth story.  The event ended with a call to action by the Executive Director of Birth Sisters of Charlottesville.

 

                            

 

The event was intended to focus on the Charlottesville/Blue Ridge Health District maternity care community – however, registration was opened to VDH teams across all 35 health districts.  There were a total of 185 registrants with 119 attendants, 110 of whom stayed for the entirety of the 2-1/2 hour virtual event.  A total of 28 people completed the post-event survey, with a number of tangible take-aways, satisfying the Team’s overall goal of drawing consensus and evoking action regarding the poor birth outcomes for Black Women. 

 

A recording of the event remains available at www.listeningtotheliving.org.  The recording has been shared widely across the Charlottesville maternity care community, and across Virginia’s MCH community through collaborative networks including the local health districts and through the Virginia Neonatal Perinatal Collaborative.  The recording continues to be shared and watched.

 

Continued work by the Learning Collaborative Team, includes the ongoing development of a black birth plan, networking and building stronger foundations and influence in the Charlottesville maternity care community, and exploring ways to bring Black maternity care providers into the community.

 

Strategy 3:  Local Health District (LHD) Strategy: Increase opportunities for workforce development for LHDs to align with MCH leadership competencies

Beginning Fall FY23, the Local Health Districts were given the opportunity to participate in the MCHsmart asynchronous learning environment available through the MCH Navigator, housed within The National Center for Education in Maternal and Child Health (NCEMCH). MCHsmart contains 12 modules, one for each MCH leadership competency, with a pre- and post-test regarding each module.  Twelve of the 35 districts selected this activity for their MCH Teams to focus on during FY23. An initial TA call was held with the districts and leadership from NCEMCH, and participants were given a special passcode to use at registration, so that Virginia participant information could be aggregated.  The districts will have continued access to engage with the learning environment and complete the modules during FY23.

 

	PRIORITY 3   MCH data capacity:  Maintain and expand state MCH data capacity, to include ongoing needs assessment activities, program evaluation, and modernized data visualization and integration
OBJECTIVE	Maintain 100% referral rate and improve/streamline processes by which all infants with confirmed newborn screening disorders are referred to CYSHCN care coordination services
PERFORMANCE MEASURE	SPM 1:  Cross-Cutting (early and continuous screening):  Percent of infants diagnosed with a newborn screening disorder who are referred to care coordination services in the CYSHCN program

 

The Virginia Newborn Screening Programs (VNSP) include the Newborn Bloodspot Screening Program (NBSP), the Early Hearing Detection and Intervention Program (EHDI), and the Critical Congenital Heart Disease Screening Program (CCHD). The program also provides staff support to the Virginia Rare Disease Council (RDC). The overarching goal for the VNSP is to strive for optimal outcomes of Virginia’s affected infants through early diagnosis, referral, and intervention by identification with newborn screening. All newborns born in the Commonwealth of Virginia are required to receive a newborn screening within 24-48 hours after birth (NBSP and CCHD) or prior to discharge from the hospital (EHDI). The NBSP and EHDI programs monitor the newborn screening results of all babies born within the Commonwealth of Virginia, as well as request follow-up and diagnostic testing for up to 6 months (NBSP) and 36 months (EHDI). The NBSP is currently establishing a long-term follow-up program for monitoring newborn bloodspot screening disorder outcomes.

 

Virginia currently screens for 35 of the 37 targeted disorders on the national recommended universal screening program (RUSP) as well as a targeted congenital Cytomegalovirus (cCMV) screening program for any infant who fails the hearing screen at birth to be screened for cCMV before hospital discharge. Virginia initiated screening for Spinal Muscular Atrophy (SMA) and X-linked Adrenoleukodystrophy in March 2022. The CCHD program focus is on quality assurance and passive surveillance. All infants identified with a confirmed newborn screening disorder, including positive CCHD newborn screens, are referred to CYSHCN care coordination services. Infants identified with hearing loss through the EHDI program are automatically referred to Early Intervention for care coordination services. The VNSP maintains a 100% referral rate for care coordination services, unless a healthcare provider notes that a referral is not indicated, or the infant has already been referred for services.

 

In 2021, Virginia had a total of 96,072 births. A total of 93,894 (97.7%) of infants born were screened for hearing, with 92,298 infants passing overall. Of the infants who received a hearing screen, 5,223 passed with risk and 3,325 infants did not pass the initial hearing screening. Of the infants who did not pass the initial hearing screening, 137 were diagnosed with permanent hearing loss, of which 137 (100%) of these infants were referred to Part C Early Intervention services. A total of 94,711 (98.5%) of infants born received a bloodspot newborn screen. Of the infants that received a bloodspot newborn screen, 13,814 (14.6%) had an out-of-range result (abnormal) requiring follow-up services or diagnostic testing. Of these infants, 1,602 (1.69%) had a critical (presumptive positive) targeted newborn bloodspot screening disorder result with 148 confirmed diagnosed cases referred for care coordination. A total of 62,403 (70%) of all infants born were reported to have a CCHD screen. A total of 29,369 (30%) infants did not have record of screening reported, and 4,586 (15.6%) infants of these were not screened due to prenatal diagnosis, parent refusal, NICU admission, or other reasons. Of these infants screened, 76 (0.12%) had a reported failed screen with one confirmed case. Challenges in staffing for all programs resulted in delays in follow-up reporting and case closures.

 

Strategy 1:   Maintain the VaCARES Registry and expand capacity to document and track referrals of infants from the Newborn Screening Program to CYSHCN programs

 

The Virginia Newborn Screening Programs, healthcare providers, and hospitals report confirmed cases into the Virginia Congenital Anomalies Reporting and Education System (VaCARES) until two years of age. The Birth Defects Surveillance Program (BDS) is a passive surveillance tool and serves as a data repository for birth defects to be reported for the first 2 years of life. The birth defects data informs stakeholders regarding the prevalence of birth defects in Virginia and potential impact of those affected with rare diseases. All infants identified with a disorder on Virginia’s newborn screening panel are referred for care coordination services in the CYSHCN program.

 

The maintenance and ongoing support of the VaCARES Registry is provided by the VDH Office of Information Management to allow stakeholders to document birth defects. It also provides programmatic staff the ability to query the prevalence of a certain birth defect affecting those in Virginia up to age 2 years. The CCHD NBS program has a manual process for documentation that enables the program to track the number of infants referred and who accepted services to CYSHCN programs. A future process improvement would be to automate documentation to track number of infants referred and who accepted services to CYSHCN programs. DCFH partnered with internal agency teams to identify needs, gaps and future direction of the current birth defects surveillance system. The BDS program successfully engaged a CCHD NBS Program/Rare Disease Council (RDC) Coordinator in October 2022. This has expanded the CCHD NBS program has expanded its capacity to initiate, document, and track referrals to Care Connection for Children.

 

Future plans include enhancing the active surveillance of the BDS program to provide quality assurance to hospitals. By ensuring compliance of reporting, the program will have a better understanding of the impact of birth defects on Virginia’s population.

 

Strategy 2:   Partner with NYMAC (New York-Mid-Atlantic Regional Genetics Network) to assess and respond to state needs related to genetic services

 

Programmatic leadership, Christen Crews, MSN, RN, and Virginia’s Family Delegate, Dana Yarborough, continued to serve as a co-leaders on a project to collaborate with NYMAC (New York - Mid-Atlantic Regional Genetics Network) to assess and respond to state needs related to genetic services. This project is ongoing and includes a diverse team of stakeholders from across the Commonwealth. A current product of this collaboration is the development of a “Genetic Navigator” training toolkit to assist community health workers, case managers, social workers, etc. help bridge the gap and ensure those who need genetic services have a better understanding for the need to be seen by the specialist. The product has been piloted and the Virginia NYMAC team is currently assessing feedback for continued development and improvements. NYMAC presented to the RDC in September 2022 about the needs of individuals affected by rare diseases as they relate to genetic services in Virginia. These types of partnerships will assist the RDC with advising the Governor and the General Assembly about potential policy improvements.

 

	PRIORITY 4   Upstream/Cross-sector strategic planning:  Eliminate health inequities arising from social, political, economic, and environmental conditions through strategic, nontraditional partnerships
OBJECTIVE	Maintain 100% referral rate and improve/streamline processes by which all infants with confirmed newborn screening disorders are referred to CYSHCN care coordination services
PERFORMANCE MEASURE	SPM 1:  Cross-Cutting (early and continuous screening):  Percent of infants diagnosed with a newborn screening disorder who are referred to care coordination services in the CYSHCN program

 

Strategy 1:  Maintain and expand family engagement on state NBS Advisory Committee

 

The Newborn Bloodspot and the EHDI Programs both have advisory committees with family representatives serving on the board. The Rare Disease Council includes representation from, and engages with, individuals diagnosed with rare diseases, caregivers, patient organization representatives, healthcare providers, researchers, insurance and biotechnology companies, and other community partners to identify health inequities for individuals affected by rare diseases in order to advise the Governor and the General Assembly about potential policy improvements. The programs have public comment periods during their advisory committees and invite parent speakers to share their stories. The VA EHDI team continues to provide support to families with newly diagnosed children, a follow-up specialist provides referrals to families interested in receiving family to family support. Additionally, they refer children to Care Connection for Children (CCC) for case management services and to the Infant and Toddler Connection in Virginia for early intervention services. Parents are provided a brief description of these services and referral is made when requested. VA EHDI also mails resources and materials to families of newly diagnosed children to include information on hearing loss, language and communication modalities, and amplification options. Resources from family support organizations and upcoming events are also shared with families.

 

In order to thoroughly address Diversity Equity and Inclusion (DEI) in EHDI systems, it was essential to consult with experts within this field of work. In partnership with Virginia Commonwealth University (VCU), Partnership for People with Disabilities, VA EHDI worked with the Virginia Center for Inclusive Communities (VCIC) to establish the first series of diversity, equity and inclusion training for stakeholders within the EHDI system. From January to May of 2022, VA EHDI and CFI hosted a webinar series in two cohorts: Your Role in Workplace, Diversity, Equity & Inclusion. These included the following webinars: Foundations

of Diversity and Inclusion and Inclusion/ Unconscious Bias 101, Unconscious Bias 201, Cycle of Prejudice, Microaggressions, Exploring Race and Racial Equity, and Exploring Socioeconomic Status. Due to resounding positive feedback, in the October to December 2022, VA EHDI hosted the Diversity, Equity and Inclusion Lunch and Learn Workshop series, which included the following sessions: Intersectionality, Fostering LFBTQ+ Inclusion, Microaggressions, Building Facilitation Skill for Dialogue, Creating Upstander/Active Bystander Cultures, Creating a Sense of Belonging.

 

Additionally, prenatal and postnatal education are important aspects of increasing awareness of hearing screening prior to birth and to allow families to be prepared with next steps if their child fails the initial hearing screening. In 2019, the Virginia EHDI team launched a pilot program with Home Visiting agencies in Northern Virginia to provide education for prenatal mothers regarding newborn hearing screening. Survey results highlighted that many families were not aware that their child would be getting a hearing screening after birth. This pilot highlighted the need for continued prenatal education and identified a gap in existing prenatal education regarding newborn screening programs. In Early 2020, the VA EHDI program created a diversity and inclusion DEI plan that outlined improvements to the program which support intentional changes to ensure inclusion and diversity in all areas of the program.

 

One major change included the development of a plan is to collaborate with the Blood Spot Screening program in Virginia to increase prenatal outreach regarding the newborn screening programs. The NBSP collaborated with VA EHDI in FY22-23 on a Prenatal Outreach initiative to consolidate and disseminate educational materials and community resources to expecting parents and prenatal health care providers. The aim of this collaboration was to increase understanding of newborn screening in addition to improving health literacy relating to the newborn period for both infants and their caregivers. The VNBSP is currently collaborating with the Department of Consolidated Laboratory Services (DCLS) on a Primary Care Provider Outreach initiative to improve timeless of newborn bloodspot screening follow-up. The aim of this collaboration is to provide training and education to primary care providers offering pediatric services to encourage collections of repeat newborn bloodspot screens in office, rather than outpatient laboratory settings. This initiative will also focus on improving communication between the programs and healthcare providers in support of the overarching mission of the VNBSP. This collaboration is ongoing with plans for future joint outreach.

 

Strategy 2: Sustain Early Hearing Detection & Intervention Program, to include support for paid 1-3-6 Family Educators

 

EHDI Staff continue their work with VCU’s Center for Family Involvement to provide family to family support. They also will continue recruiting children and families who are deaf and or hard of hearing for advisory committee participation. VA EHDI will continue to strengthen follow up activities to newly diagnosed children and children who are older. Overall, VA EHDI will continue to implement technological advancements to achieve program goals and objectives The Virginia EHDI program partners with the Center for Family Involvement at Virginia Commonwealth University, and Family Educators continue to provide family-to-family support. In 2022, VA EHDI started planning the first Statewide VA EHDI conference to be held in January 2023.

The Virginia Early Hearing Detection and Intervention (VA EHDI) program continues efforts to create technological and system enhancements to educate families, providers, and stakeholders and decrease loss to follow-up and lost to documentation within the EHDI system. Additionally, VA EHDI continues to evaluate the Virginia Infant Screening & Infant Tracking System (VISITS), which is the EHDI Information System (EHDI-IS), for accuracy and efficacy. Implementation of new program elements, such as the automated follow-up efforts via VISITS and an enhanced follow up plan, have helped to ensure improved and timely communication efforts with stakeholders and families. The enhancements in VISITS include updates to the texting platform, implementation of an Interactive Voice Response system for incoming calls, and continued updates to the VA EHDI website. These advancements aid in decreasing loss to follow-up, as well as meeting the Centers for Disease Control (CDC) 1-3-6 guidelines.

In 2023, the focus of the SLC will be data driven decision making and establishing workgroups focused on relevant programmatic updates such as the development of ENT Guidelines, Data Driven Decisions, and Quality Improvement (QI) activities. The SLC was tentatively scheduled for virtual meetings in May and November 2022; however, due to lack of responses and concerns about low participation, the SLC meeting has been postponed to February 2023 for an in-person meeting. The tentative agenda for this meeting will include the following: programmatic updates and enhancements, review and discussion of data, and workgroup sessions related to the development of the ENT guidelines and QI activities.