MCH/CSHCN Ongoing Needs Assessment Activities

Utah Title V staff employ various mechanisms to assess the ongoing needs of MCH/CSHCN populations. Some of the strategies implemented are described below:

1. Throughout the year, available data is assessed and reviewed related to Block Grant performance and outcome measures. This allows for a ‘mini’ needs assessment annually through analysis of data trends and identification of demographic and geographic disparities within the domains. This data review process informs program planning and goal setting relative to emerging and unmet MCH/CSHCN population needs. Beginning in 2023, core Block Grant writers also began receiving additional training on Health Equity and applying an equity lens when reviewing Federally Available Data (FAD) and program data related to performance and outcome measures.

2. Needs assessment activities include updating MCH/CSHCN topic reports on Utah’s Public Health Indicator-Based Information System (IBIS) and short data reports on a wide array of public health topics (topics can be found at: https://ibis.health.utah.gov/ibisph-view/publications/index/Chronological.html). Employees are responsible for updating indicators for release to the Utah Legislature and the public through the Public Health Outcome Measures Report. Updating these indicators enables staff to stay current on data trends and identify areas where renewed focus may be needed.

3. Collaboration and partnership with Local Health Departments (LHDs) enables the State to become more aware of needs and issues affecting MCH/CSHCN populations at the local level and creates a unified focus for meeting needs. Title V staff meets quarterly with the 13 LHD Nursing Directors for regular communication and collaboration.

4. Programs within the Office of MCH and the Office of CSHCN collaborate to identify data gaps and to develop and conduct ongoing assessments to collect such data. One identified data gap involved COVID-19 vaccine uptake among pregnant individuals. Early clinical research on COVID-19 vaccines excluded pregnant persons. Because of this, clinicians and pregnant individuals were left to weigh the risks of COVID-19 against the unknown safety of vaccination during pregnancy. As more data was published indicating vaccines were safe to administer during pregnancy, the Utah PRAMS team received funding from the Council of State and Territorial Epidemiologists (CSTE) to collect information about pregnancy experiences related to COVID-19 vaccines in FY 2022. These questions provided important information on whether a respondent received a vaccine and, if they did not, what the reasons were for not getting a vaccine. Questions also assessed different sources of COVID-19 vaccine information among pregnant people. A summary of findings was published in the January 2023 Health Status Update.

5. The Department highlights leading health issues in its monthly Utah Health Status Update (HSU) publication. HSUs are sent to the Governor’s Office and more than 500 individuals, including policy makers, health professionals, and state and LHD staff. Because Title V activities happen via collaboration across multiple programs, the HSU publication keeps all readers informed about important and emergent state population health needs across many programs.

Each year, a department-wide meeting is held to review ideas for potential HSU articles. The SSDI Project Coordinator/MCH Epidemiologist represents Title V programs. Prior to the meeting, the SSDI Project Coordinator/MCH Epidemiologist requests that all MCH/CSHCN staff submit potential topics, which are then presented at the annual HSU topic meeting. After the meeting, a finalized HSU annual publication schedule is developed.

The following provides a list of articles completed in 2022-2023 related to MCH/CSHCN populations:

• Use of Tele-Audiology for diagnostic testing after failed newborn hearing screening - February 2022
• COVID-19 pandemic-related stressful events experienced during pregnancy - March 2022
• Autism Spectrum Disorder and suicidal ideation - April 2022
• Prenatal care experiences during the COVID-19 pandemic - April 2022
• Newborn hearing screening in underserved populations - June 2022
• Reduced incidence of congenital Cytomegalovirus (CMV) infections during the COVID-19 pandemic - August 2022
• Firearm-related deaths among children ages 0-18 in Utah, September 2022
• Influenza vaccination coverage during pregnancy in Utah, PRAMS 2016-2020 - October 2022
• Sudden unexpected infant deaths in Utah, 2020 - October 2022
• Experiences of anxiety during pregnancy in Utah, PRAMS 2016-2020 - November 2022
• COVID-19 vaccination during pregnancy - January 2023
• Positive childhood experiences data from the 2021 Youth Risk Behavior Survey - February 2023
• The Embrace Project Study: Supporting the well-being of minority women along Utah’s Wasatch Front through mental health and self-care practice, April 2021-October 2022 - February 2023
• Streamlined training to help Head Start childcare centers receive TOP Star endorsement - March 2023
• Trends and characteristics of gestational diabetes: Utah, 2012-2021- April 2023
• Out-of-hospital births in Utah: Newborn hearing screening, diagnostics, and cCMV testing - May 2023
• Sociodemographic factors associated with frequent bullying, Utah, 2018-2021 - May 2023

6. Title V staff meet with community partners to identify and work on emerging issues. The Utah Children’s Care Coordination Network, which is funded through Title V, serves as a surrogate marker for the medical home and convenes monthly as an educational and needs-based forum for care coordinators, commercial and public insurance providers, practice managers, and providers to discuss issues surrounding pediatric care coordination. Participants identify gaps in services for children with special health care needs, then work together to problem solve and find solutions that include support, specialists, and organizations to meet family needs. Educational topics over the past 12 months have included: asthma resources; autism; Utah State legislative session update; enhancing referrals; a day in the life of a care coordinator; the power of care coordination in the medical home; mental and behavioral health resources; IEPs, special education, and 504s; quality improvement; transition to adulthood; motivational interviewing; and self-care. All meetings are recorded and made available through the Utah Children’s Care Coordination Network YouTube channel for later viewing. The Office of CSHCN has established program-specific dashboards that allow outreach, goal setting and progress, and overall accountability to be tracked in real time. These dashboards were vetted with the Department’s quality improvement director and used as a working example for other programs and Offices to emulate.

The Integrated Services Program (ISP) also convenes monthly Transition workgroup meetings with a broad group of stakeholders who serve the CSHCN population. The goal is to build a community standard for every teen living with a chronic condition and build systems of care that consistently provide transition. There is much work being done throughout the department, Intermountain Health, University of Utah Health, the Utah Parent Center, and the pediatric and adult community.  Many from these organizations, along with young adults who have transitioned and parents of CSHCN youth in the community, have participated in the following efforts: Teen to Adult Healthcare Transition Summit, Project ECHO Transition series, and Transition University.

Concerning Changes in Utah’s MCH/CSHCN Populations

The frequency of people reporting anxiety before pregnancy had been increasing before the COVID-19 pandemic occurred, but jumped from 27.8% in 2019 to 35.0% in 2021. While there was a slight decrease in anxiety during pregnancy in 2021, it remained high (33.7%). The proportion of individuals experiencing depression before, during, and after pregnancy also increased and has likely been exacerbated by the pandemic. In 2021, 23.2% of women experienced depression before pregnancy, 24.5% experienced it during pregnancy, and 16.2% experienced postpartum depression symptoms (up from 17.6%, 18.8%, and 15.1% in 2019 respectively). As the prevalence of perinatal mental health conditions was increasing before and possibly exacerbated by the pandemic in Utah, timely access to mental health resources is vital for parents and providers. This data supports the need for continued focus on perinatal mood and anxiety disorders.

Changes in Utah’s Title V Capacity and Systems of Care

In the past three years, the EHDI state audiologists have completed 80 diagnostic Auditory Brainstem Response (ABR) tests via telehealth, which has allowed for timely diagnosis and intervention for infants who failed newborn hearing screening. The Utah EHDI Program has also partnered with LHDs to act as remote testing sites, and has trained and continues to train their care coordinators to facilitate the testing between the families and audiologists. Utah is currently the only state providing this public health service.

The Utah Parent Center (UPC) and CSHCN families continue to educate and coordinate on individuals receiving vaccination/booster(s) and being educated on the benefits, side effects, down time, and needs for childcare support after receiving vaccinations.

On the local level, care coordination brings into focus the understanding of community; culture and local customs; and a knowledge of support, services, and specialists in the area. Care coordinators support families of children who have not met prescribed well-child visits in order to identify barriers to service and offer strategies to mitigate these barriers. Care coordinators create care plans with families and provide follow-up to both families and providers to ensure a closed-loop process. Care coordination at Help Me Grow, UPC, and LHDs is funded through Title V Maternal and Child Health Block Grant funds.

The Office of CSHCN programs strive to coordinate care for the children, adolescents, and families served throughout the State. The ISP contracts with four LHDs in rural Utah to provide care coordination in those communities. The Office has internal communication methods to encourage care coordination and transition for the populations served using an electronic record called CaduRx which allows sharing of patient records in one system, ensuring clear communication and follow-through methods to reduce loss to follow-up.

The Office also has external partnerships with other State agencies which work toward reducing redundancies, creating data sharing agreements, utilizing CHARM (including incorporating the ASQ screeners) and holding quarterly meetings to share records in a one-stop, shared resource. Additional platforms, such as Hi-Track, monthly meetings, data sharing agreements, and shared resources are utilized to create a system that flows smoothly for Office employees.

Breadth of the State’s Title V Partnership and Collaborations

The Offices of MCH and CSHCN collaborate with other state agencies, key partners, and private organizations on a regular basis to address ways to improve the health of women, infants, and children in the state. Staff regularly meet with new partners to assure the MCH/CSHCN populations are being served.

Ages and Stages Questionnaire Third Edition (ASQ-3) screenings submitted to the DHHS ASQ Online Enterprise Account declined significantly in 2020 and 2021 (11,039 and 10,866 respectively), compared to 2019 levels. This was likely due in large part to the COVID-19 pandemic. However, submitted screenings have since returned to pre-pandemic levels with 15,345 screenings submitted to the Enterprise Account in 2022. The pandemic also raised awareness and need for Social Emotional Screening, which resulted in a 35% increase of ASQ Social Emotional Screenings being submitted.

Efforts to operationalize the 5-Year Needs Assessment

Each National/State Performance Measure has a lead staff member who coordinates activities and reporting related to their measure. All Department staff who are responsible for working and reporting on activities related to Utah’s National and State Performance Measures continue to meet on a regular basis to discuss cross-collaboration and teamwork on performance measures. The UPC and CSHCN Family Partnership Advisory Committee advises the Office on understanding the family/parent perspective on issues, needs, and services, and influences policies and program improvement. The Data Resources Program manages the WESTT system to track Utah’s NPMs/ESMs/SPMs as these evolve or activities change; the WESTT system is updated to compensate for these natural evolutions and refinements with the Maternal and Child Health Block Grant.

Changes in Organizational Structure and Leadership

During the 2021 legislative session, House Bill 365 was passed to combine the Department of Health with the Department of Human Services effective July 1, 2022, thus creating the Department of Health and Human Services (DHHS) led by Executive Director Tracy Gruber.

The Offices of Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) are housed in the Division of Family Health (DFH). Noël Taxin is the Director for the Division of Family Health. In 2022, DFH added a new Office of Early Childhood (EC) and welcomed the Office of Coordinated Care and Regional Supports (CC&RS) which was formerly housed in the Department of Human Services. MCH/CSHCN remain the primary Offices responsible for the administration of most Title V activities, but EC is also responsible for Title V activities surrounding developmental screening for NPM 6.

Laurie Baksh is the director for the Office of Maternal and Child Health, Amy Nance directs the Office of Children with Special Health Care Needs, Nune Phillips is the director for the Office of Early Childhood, and Kim Kettle directs the Office of Coordinated Care and Regional Supports.

Office of Maternal and Child Health:

The Office of Maternal and Child Health has experienced minimal turnover this year. Two new staff were added to the UWNQC program with the receipt of a new Perinatal Quality Collaborative grant from the CDC. The SSDI Grant Coordinator position was vacated in May 2022 but was filled in August 2022.

Office of Children with Special Health Care Needs:

The Office of CSHCN did not see significant staffing changes this past year. A few nurses in the foster care program retired, but replacements were hired for those positions. The Utah Birth Defect Network Program Manager position had been filled but that person later resigned. CSHCN is currently actively recruiting for the position. Overall, this year we have maintained the CSHCN staffing and continued service provision with quality.

Office of Early Childhood:

The new Office of Early Childhood, formally launched in November 2022, comprises the Baby Watch Early Intervention program, the Child Health Advanced Records Management (CHARM) program, the Home Visiting Program, and Early Childhood Utah. In December 2022, Utah was awarded a three-year Preschool Development Grant B-5 (PDG). Utah’s PDG is focused on ensuring all Utah children have access to high quality early childhood care and education programs and services beginning at birth, which serve to ensure they are prepared for kindergarten with a foundation for academic success and positive health and well-being outcomes. PDG activities include an early childhood learning pilot which implements culturally responsive and equitable practices for diverse communities, statewide implementation of the Pyramid Model, creating a one stop early childhood resource website, piloting online developmental enhancement activities for families, expanding parent engagement support services, and increasing capacity for statewide early childhood care coordination. The PDG activities will also include a comprehensive early childhood needs assessment and strategic plan, both to be released in early 2024.