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MCH/CSHCN Ongoing Needs Assessment Activities

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

2. Needs assessment activities include updating MCH 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. Updating these indicators enables staff to stay current on data trends.

3. Collaboration and partnership with Local Health Departments (LHD) enables the State to become more aware of needs and issues affecting MCH populations at the local level and creates a unified focus for meeting MCH needs. The MCH Bureau Director meets regularly with the LHD Nursing Directors to develop objectives and implement strategies to reach MCH populations specific to the needs in their respective areas.

4. Programs within the MCH/CSHCN Bureaus collaborate to identify data gaps and to develop and conduct ongoing assessments to collect this data. Specific examples include developing questions related to well-woman care to propose for addition to the Behavioral Risk Factor Surveillance System (BRFSS) survey and developing the “Mom’s Opinions on Mental Health” survey to gather information on mental health screening, treatment access and barriers, and knowledge of symptoms. Staff participate in several advisory committees, and propose adding new questions to fill identified data gaps. Advisory committees include the Behavioral Risk Factor Surveillance System (BRFSS), Pregnancy Risk Assessment Monitoring Survey (PRAMS), Student Health and Risk Prevention (SHARP), and Vital Statistics.

5. The UDOH 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 work happens via collaboration among many programs, the HSU publication keeps all readers informed about important and emergent state population health needs across many state health programs.

Each year, the Center for Health Data and Informatics (CHDI) schedules a meeting with representatives from the UDOH. Participants are asked to bring ideas for potential HSU articles. The SSDI Project Director/MCH Epidemiologist represents the MCH/CSHCN Bureaus. Prior to the meeting, she requests that all MCH/CSHCN staff submit potential topics, which are presented for review 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 2020 related to MCH/CSHCN populations:

Early Hearing Detection & Intervention (EHDI) Ten Years of Data. January 2020.
Vaping and the Increased Risk for Youth Nicotine Addiction. February 2020.
Children’s Hearing Aid Program (CHAP). March 2020.
Dental visits to Emergency Departments. March 2020.
Maternal Mental Health Screening through WIC Services. March 2020.
Child Blood Lead Status Update. June 2020.
Maternal and Child Health State Priorities, 2021–2025. July 2020.
Tobacco Smoking Around the Time of Pregnancy. August 2020.
Abortion and Effective Contraceptive Use in Utah. September 2020.
Infant Mortality in Utah. September 2020.
Attention Deficit Hyperactivity Disorder (ADHD) Prevalence Estimates in Utah. October 2020.
COVID-19 and the Return to Schools. October 2020.
Infant Safe Sleep Recommendations. November 2020.

6. The UDOH produces reports to evaluate and educate on Title V populations and issues. This last year, due to the pandemic and staff turnover, only one report was finalized and published. Other reports have been drafted and are pending finalization. The MIHP published the report “Maternal Mental Health in Utah, 2017-2019” which was presented in a press conference and findings were highlighted in statewide media outlets.

7. Title V staff meet with community partners to identify emerging issues. The Utah Children’s Care Coordination Network, funded through Title V, 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 supports, specialists, and organizations that meet family needs. Guest speakers are invited to teach participants about special education, IEP/504, diagnosis-specific topics, legislative changes, Medicaid and CHIP, and other issues affecting care coordination. Based on the needs assessment, the CSHCN Bureau changed the format of outreach, accountability and goal setting. This past year has been a baseline year in which we have set up the new structure so future years will hopefully show how the changes positively affect our statewide service provision in reaching families' needs. The Integrated Services Program (ISP) holds weekly meetings with stakeholders who serve the CSHCN population and discuss collaborative ways to market services, refer to each other, unify quality assurance and satisfaction measures and lastly select a unified curriculum and process to educate the public on who access our services for both medical home and transition.

Concerning Changes in Utah’s MCH/CSHCN Populations

During the pandemic many issues arose and deficiencies were identified in the system. Lack of access to healthcare, food/hygiene/first aid resources, employment, housing and available resources, stable/reliable internet connections, language/cultural barriers, mistrust due to mistreatment, disparities and inequities have occurred. Gaps have been identified in the surveillance, data and effective communication systems throughout the State.

In the beginning and throughout the pandemic foster children and their families have been sick with COVID-19. The Christmas Box House, a facility which houses children who cannot be placed also caught the virus. With short staffing and quarantine, the children were limited in their activities and interactions. In the beginning of the pandemic, the CSHCN Bureau purchased 12 iPads and 18 headsets for the foster children in custody to utilize for education and school assignments, free time entertainment, and telehealth, as DCFS did not have funding to support these efforts. Additionally, this past year the Fostering Healthy Children Program (FHC) took the initiative to create an identification, monitoring and follow-through tracking system to assist the children, youth and families who contracted the COVID-19 virus.

The full impact of COVID-19 on MCH/CSHCN populations is yet to be determined. Preliminary birth data shows that the number of births in 2020 is down from 2019. We anticipate that the proportion of the population who attended preventive health visits during 2020 will be lower than in previous years. We also anticipate that with children isolated at home and not attending school, child abuse and adverse childhood experiences may go undetected. Additionally, the Utah Registry of Autism and Developmental Disabilities (URADD), which tracks the prevalence rates for Autism Spectrum Disorder and other Developmental Disabilities, has begun collecting data from 2020. This will allow CSHCN to look at the fallout of COVID-19 on the ability of families to obtain a diagnosis for their child or adolescent. Title V leadership will continue efforts to address these issues and work with stakeholders to improve the statewide system.

In January 2021, a new PRAMS report on maternal mental health was published. The report noted that the frequency of people reporting anxiety before pregnancy significantly increased from 12.8% in 2012 to 27.8% in 2019 and the frequency of reported postpartum depressive symptoms significantly increased from 11.2 % in 2012 to 15.0% in 2019. As the prevalence of perinatal mental health conditions is increasing in Utah, timely access to mental health resources is vital for parents and providers. This new data supports the need for continued focus on perinatal mood and anxiety disorders.

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

The COVID-19 pandemic impacted the systems of care in the State of Utah, including those for Title V populations. These impacts were especially felt among Utah’s Local Health Departments (LHDs).

The COVID-19 pandemic of 2020 (and ongoing) arrived with force and completely overwhelmed public health especially at the LHD level. LHDs began preparation several months prior to the arrival of COVID-19 in Utah. Plans were reviewed, revised and re-implemented. Staff were retrained, educated and prepared for this upcoming situation. However, the impact of COVID-19 exceeded LHD capacity and consumed programs. LHD’s had a responsibility to protect their residents to the best of their ability and priority was focused on this endeavor. It was an “all hands on deck” situation and every single person at each LHD was deployed to assist in this pandemic. Staff only recently have been able to start moving staff back to their original roles and programs. Staff have experienced extreme stress and trauma in the past year and long-term effects of COVID-19 on our public health workforce are a concern, including burnout and retention.

Clearly, some services had to continue (i.e. WIC, food/water sanitation, other disease investigations) and several modifications were implemented to safely provide these services. One area that was greatly impacted was Maternal Child Health (MCH). The COVID-19 pandemic needed nursing services for health assessments, testing and vaccinations and most, if not all, MCH nurses were pulled away. These nurses were some of the key individuals who were recruited early in the pandemic and continue to be utilized as the vaccination clinics and outbreaks continue. Additional staff were hired to help, but the workload remained at a high level, requiring internal staff to continue their support and MCH programs to be put on hold.

MCH services were put on the back burner as LHDs worked to address pressing issues such as rent, work, and personal health. As time allowed, outreach efforts were done to check up on clients via virtual/telephone methods. LHD’s started doing more telehealth services and moved away from in-person visits to keep things going. Challenges noted in this process include not having enough private spaces in their worksites to allow all staff to work while protecting client confidentiality. As such, staff had to share private work spaces and alternate use of these areas. Additionally, internet access in some parts of the state is not equitable.

It is hard to move to a “recovery” phase of the pandemic when LHD’s are still significantly dealing with an acute situation. Progress is being made with new COVID-19 funding coming to LHDs to support these efforts. There is a small light at the end of the tunnel. LHD’s recognize the importance of getting these services back out to the Title V population and are prioritizing staffing to help get back to normal.

As LHD’s pick up where they left off in the MCH realm, they are preparing for new and difficult situations that have impacted this population as a result of the pandemic (i.e. mental health issues, lack of preventative care, developmental delays). It is more important now than ever that MCH programs ramp back up to help serve this important and fragile population.

In October 2020, the CSHCN Bureau was awarded the AMCHP Telehealth Cares Act funding. This provided an opportunity to think outside of the box for ways the CSHCN population is reached, both during the pandemic and moving forward when in-person services are not an option. Processes and procedures have been developed to ensure sanitized equipment is available for delivery or pick-up, pre-visit, and return or pick up of loaned equipment.

The CSHCN Bureau purchased internet-enabled cellular technology which is allowing for increased access to telehealth services in rural, urban, and underserved communities throughout Utah. Local care coordinators, including Family to Family (F2F) Health Information Centers (HIC), are working with families to ensure the experience with both technology and the telehealth visit meets or exceeds expectations. CSHCN created a “lending library” of technology to include internet-ready devices (chrome books and cellular hotspots), available to families who are benefiting from telehealth visits. Families are able to connect with primary and specialty care, early intervention, and care coordination to facilitate connection with services and medical providers.

Care coordinators and F2F HIC are educating and practicing with families on how to connect with telehealth providers and, as needed, are physically available to the family during their initial visit. The lending libraries are located at various agencies throughout the State of Utah, which include trained professionals with backgrounds in medicine, nursing, social work, care coordination, family peer support, audiology, physical and occupational therapies, and speech/language pathology. The lending library has been marketed through the hospital systems, Utah Parent Center/F2F HIC, Help Me Grow Utah, state and local health departments, and local primary care providers. In the past three years, the EHDI state audiologists have completed 60 diagnostic Auditory Brain Response (ABR) tests via telehealth (in the rural areas of Blanding and Roosevelt, Utah), which has allowed for timely diagnosis and intervention for infants. Utah is the only state currently providing this public health service.

Although these services have greatly helped families living in these two regions, other rural areas would also benefit from our teleaudiology program. This funding opportunity has expanded our reach by adding three more tele-audiology sites - two rural and one urban site in an underserved, low income, Latino community. This grant has funded the necessary audiology diagnostic testing and video-conferencing equipment (i.e., ABR, otoacoustic emissions).

The Utah EHDI Program has been partnering with local health departments 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. As this is a new venture, CSHCN, EHDI, and EI families will be surveyed post-visit to evaluate the patient and family experience with telehealth, ease of use with technology, and overall satisfaction with the lending library concept and tele-audiology service.

A positive benefit of the AMCHP Telehealth CARES funding was both to create a virtual technology lending library and the ability for the Utah Parent Center to be able to utilize the equipment for scheduling and tracking vaccination appointments. The CSHCN Bureau Director coordinated with the Utah Parent Center and CSHCN families to coordinate them receiving the SARS-CoV-2 vaccination and being educated on the benefits, side effects, down time and needs for child care support after receiving the shot.

In February, the CSHCN Bureau was introduced to a data integration system which was developed at Cincinnati Children’s Hospital in Ohio, called IDENTITY and we are looking at the possibilities of adapting the system to fit the State of Utah’s needs for data sharing with a variety of stakeholders in order to simplify system care communications between entities and or update current platforms. In the legislative session a determination was made to merge both the Utah Department of Health and Utah Department of Human Service and therefore, we will wait to update our data sharing system(s) until leadership determines the communication system for the new agency.

The Utah CSHCN Team applied for the P4 Challenge and our proposal included patient record review to determine which children are outside recommended well-child visit parameters; access to real-time patient-specific immunization and other public health data; referral to supportive care coordination with local care coordinators; and use of portable telehealth technology such as Chromebooks and Wi-Fi hotspots. All components of the intervention may not be well-suited to all patients in all locations, so discretion would be used on a case-by- case basis to tailor the most effective solution to serve the local population. Unfortunately, the funding was now awarded, but CSHCN will encourage the practices and clinics targeted for this intervention to enroll in the Child Health Advanced Records Management (CHARM) system. CHARM links several health care databases, primarily within the Utah Department of Health, to create a consolidated electronic health record for every child in Utah. Enrolled providers log into the CHARM Web Interface to allow access to newborn screening results, status of early intervention enrollment, and immunization histories.

Care coordination, on a local level, brings into focus the understanding of community, culture and local customs; and a knowledge of supports, services, and specialists in the area. Care coordinators work with families of children who have not met prescribed well-child visits to work through 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 is funded through Title V Maternal and Child Health Block Grant funds.

The CSHCN Bureau programs strive to coordinate care for the children, adolescents and families served throughout the State. The ISP contracts with four Local Health Departments in rural Utah to provide Care Coordination in those communities. The Bureau 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 to ensure clear communication and follow-through methods to reduce loss to follow-up.

The Bureau also has external partnerships with other State agencies which are working toward reducing redundancies, creating data sharing agreements, utilizing CHARM, holding quarterly meetings and working towards utilizing the clinical Health Information Exchange (cHIE) electronic record to share records in a one-stop shared resource. Additionally, other platforms such as: Hi-Track, monthly meetings, data sharing agreements, CHARM and shared resources to create a system which flows smoothly for Bureau employees are utilized.

Breadth of the State’s Title V Partnership and Collaborations

The Bureaus 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.

The unexpected impact of COVID-19 allowed for broader statewide collaborations. With moving all meetings to an online forum, programs have seen an increase in partner participation in meetings. This has been especially noticed with our partners in rural areas of the state who can participate without a long drive.

The Early Childhood Utah Program has seen an increase in engagement from partners due to the online format for meetings. This has increased collaboration occurring within state and partner programs. ECU has seen a decline in use of the Ages and Stages Questionnaire (ASQ) Developmental Screener because children were not attending programs they usually would. However, there was an uptick in the Social Emotional Screener. As partners have become more comfortable with online platforms, ASQ use is increasing again.

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 UDOH staff who are responsible for working and reporting on activities related to Utah’s NPMs/ESMs/SPMs continue to meet on a regular basis to discuss cross-collaboration and teamwork on performance measures. The CSHCN Family Partnership Advisory Committee advises the Bureau on understanding the family/parent perspective on issues, needs, and services and influences policies and program improvement. The Data Resources Program administers the WESTT system to track Utah’s NPMs/ESMs/SPMs as these evolve or activities change; the WESTT system must be updated to compensate for these natural evolutions and refinements with the Maternal and Child Health Block Grant.

Changes in Organizational Structure and Leadership

The Utah Department of Health (UDOH) is one of many state agencies in the structure of Utah’s Government. During the 2021 legislative session, House Bill 365 was passed to combine the UDOH with the Department of Human Services in 2022. The Bureaus of Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) are housed in the Division of Family Health and Preparedness (DFHP), one of four Divisions in the UDOH. MCH/CSHCN are the lead agencies responsible for the administration of Title V activities.

This past year brought change in Utah State leadership throughout the system including a new Governor, Spencer James Cox, and new cabinet members. At the Department of Health level, Richard Saunders was appointed the Executive Director of the Department, along with Heather Borski, and Michelle Hoffman, MD as deputies. The Division of Family Health & Preparedness (DFHP), had a variety of leadership retirements. On March 1, 2021, Sarah Woolsey, MD was appointed as the new Director of DFHP. The organizational charts submitted with this application include UDOH, DFHP, MCH and CSHCN.

Sarah Woolsey, MD, is board-certified in family medicine and previously served as medical director with Comagine Health, Utah’s quality improvement activities and regional health collaborative. She has contributed to the Utah Partnership for Value, a multi-stakeholder group that values health care delivery and patient engagement in Utah. Dr. Woolsey has been actively engaged in the advancement of community quality metrics through the Utah State Health Data Committee’s Transparency Advisory Group and is a member of the state’s Health Data Committee. She has worked in primary care for 20 years with underserved populations in Salt Lake City as a full-spectrum family doctor. The MCH/CSHCN Bureaus are excited to have Dr. Woolsey as a new leader who brings positive energy, engagement and new insights on how to improve the health and welfare of the women, children and families served throughout Utah.

The Bureau of Maternal and Child Health is headed by Bureau Director, Lynne Nilson and the Children with Special Health Care Needs is headed by Bureau Director, Noël Taxin. Significant staffing/structure changes happened during the past year:

Maternal and Child Health Bureau:

The MCH Epidemiology manager retired in May 2021 after a 30 year career, 21 of these years were with the Bureau of Maternal and Child Health. The SSDI grant coordinator left in October 2020 and the position was filled in May 2021. The Family and Youth Outreach (FYO) program manager left in May 2021 (Adolescent/Child, Oral Health, Pregnancy Risk Line/Mother to Baby, Utah Early Childhood Utah, Safe Haven). The vacant Epidemiology Program Manager position will be filled in October. Due to a variety of reasons that will be addressed later in this application the MCH Bureau Director decided not to replace the FYO Program Manager and all the functions of this program were split among other MCH Managers and the Bureau Director. See attached MCH Org chart for details of this change.

Bureau of Children with Special Health Care Needs:

The CSHCN Bureau hired two new epidemiologists to replace employees who left employment to support the programs. A number of nurses in the foster care system retired but we were able to replace those positions with new members to join the team. Lastly, with the ever changing structure changes to the system (i.e. minimal clinical services and closing our clinic), moving locations and reducing our space significantly. We have had to look at certain positions, reduce them and or redesign the job descriptions. Overall this year we have maintained the CSHCN staffing and continued service provision with quality.

Bureau of Health Promotion:

The Bureau Director position changed this year as well. The former BHP Bureau Director became a UDOH Division Director. And the Violence and Injury Prevention (VIPP) Program Manager was promoted to be the new BHP Bureau Director. An internal staff person was promoted to be the VIPP Program Manager.

MCH/CSHCN Ongoing Needs Assessment Activities

Utah Title V leadership staff employ various mechanisms to assess the ongoing needs of MCH 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 will also receive additional training on Health Equity and applying an equity lens when reviewing Federally Available Data and Program Data related to performance and outcome measures.

3. Collaboration and partnership with Local Health Departments (LHDs) enables the State to become more aware of needs and issues affecting MCH populations at the local level and creates a unified focus for meeting MCH needs. The Office of MCH Director meets regularly with the LHD Nursing Directors to develop objectives and implement strategies to reach MCH populations specific to the needs in their respective areas.

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 this data. Specific examples include developing and implementing questions related to well-woman care for the Behavioral Risk Factor Surveillance System (BRFSS) survey. Staff participate in several advisory committees, and propose adding new questions to fill identified data gaps.

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 work happens via collaboration among many programs, the HSU publication keeps all readers informed about important and emergent state population health needs across many state health 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 2021-2022 related to MCH/CSHCN populations:

COVID-19 Serving Children with Special Health Care Needs - January 2021
Postpartum Contraception Use Among Utah Women - January 2021
2019 Youth Risk Behavior Survey Report - February 2021
Breast Cancer Screening in Utah and the Impact of COVID-19 - February 2021
Postpartum Depression Among Adolescent Mothers - February 2021
Adolescent Health Report 2019 - March 2021
Utah E-cigarette or Vaping Product Use-Associated Lung Injury (EVALI) - March 2021
Use of Postpartum Prescription Pain Relievers - April 2021
Sociodemographic Disparities in Obtaining Oral Healthcare During Pregnancy - May 2021
The Effects of the COVID-19 Pandemic on Early Hearing Detection and Intervention Milestones - May 2021
Women’s Experiences of Support Following a Stillbirth - June 2021
Child Injury Death Trends in Utah - September 2021
Student Injuries in Utah - September 2021
Breastfeeding Information Sources - October 2021
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 - 2022
Cytomegalovirus, and socioeconomic factors affecting longitudinal outcomes of infants failing newborn hearing screening (pending publication)
Impact of the COVID-19 Pandemic on Postpartum Care in Utah (pending publication)

6. Title V staff meet with community partners to identify and work on emerging issues. The Utah Children’s Care Coordination Network, funded through Title V, whose membership serves as a surrogate marker for the Medical Home, 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 supports, specialists, and organizations to meet family needs. Educational topics over the past 12 months have included: behavioral health; diagnosis-specific topics; care coordination skills improvement; services in the time of COVID self-care/stress; EIP/504; and leisure activities for CSHCN. The Office of CSHCN 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) convenes monthly meetings with a broad group of stakeholders who serve the CSHCN population to promote and implement unified statewide curricula and standards; solicit user feedback to ensure patient satisfaction; and execute quality improvement measures.

Concerning Changes in Utah’s MCH/CSHCN Populations

During the past year, Utah continues to face many issues and deficiencies in the system. Lack of access to healthcare, food/hygiene/first aid resources, employment, housing and available resources, stable/reliable internet connections, language/cultural barriers, mistrust due to mistreatment, disparities, and inequities have continued to be identified as statewide needs within our communities. Gaps have been identified in the surveillance, data, and effective communication systems throughout the State.

The full impact of COVID-19 on MCH/CSHCN populations is still being investigated. The number of births in 2020 went down slightly from 2019, but preliminary 2021 data suggests the number of births increased somewhat. We also anticipate that with children isolated at home and not attending school, child abuse, and adverse childhood experiences may go undetected. Additionally, the Utah Registry of Autism and Developmental Disabilities (URADD), which tracks the prevalence rates for Autism Spectrum Disorder and other developmental disabilities, has begun collecting data from 2020. Data collection will be complete in September of 2022. Preliminary data suggests that the COVID-19 pandemic had little or no impact on families obtaining a diagnosis. Title V leadership will continue efforts to address these issues and work with stakeholders to improve the statewide system.

PRAMS data provides valuable and timely information on some of the impacts of COVID-19 on pregnant persons. The frequency of people reporting anxiety before pregnancy had been increasing before the pandemic, but jumped from 27.8% in 2019 to 34.5% in 2020 (the most recent data available). Anxiety during pregnancy also increased sharply from 28.1% in 2019 to 35% in 2020. From July to December 2020 Utah PRAMS included additional questions on maternal experiences related to the COVID-19 pandemic such as impacts on pre and post-natal care and COVID-19 related stressful life events. Overall 61.8% of respondents in that six-month period experienced at least one pandemic related stressor. The most common stressor was the loss of household income (39.7%) due to them or other household members losing a job or having cuts to work hours or pay.

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

Over the past year, the COVID-19 pandemic has continued to impact the systems of care in the State of Utah, including those for Title V populations. These impacts were especially felt among Utah’s Local Health Departments (LHDs).

The COVID-19 pandemic of 2020 (and ongoing into 2022) arrived with force, overwhelmed public health, and reduced services capacities especially at the LHD level. LHDs have had a responsibility to protect their residents to the best of their ability and priority was focused on this endeavor. It was an “all hands on deck” situation and every single person at each LHD has assisted in this pandemic. Staff have experienced extreme stress and trauma in the past years and long-term effects of COVID-19 on our public health workforce are a concern, including burnout and retention. As a result, there was significant staff turnover in the past year at many of the LHDs.

LHD nurses were some of the key individuals who were recruited early in the pandemic and continue to be utilized as the vaccination clinics and outbreaks continue. Additional staff were hired to help, but the workload remained at a high level, requiring internal staff to continue their support and MCH focused activities to be put on hold.

The Office of CSHCN has a lending library offering internet-enabled cellular technology which is allowing for increased access to telehealth services in rural, urban, and underserved communities throughout Utah. Local care coordinators, including Family to Family (F2F) Health Information Centers (HIC), are working with families to ensure the experience with both technology and the telehealth visit meets or exceeds expectations. CSHCN lending library of technology includes internet-ready devices (chrome books and cellular hotspots), available to families who use the telehealth modality. Families are able to connect with primary and specialty care, early intervention, and care coordination to facilitate connection with services and medical providers.

Care coordinators and F2F HIC are educating and practicing with families on how to connect with telehealth providers and, as needed, are physically available to the family during their initial visit. The lending libraries are located at various agencies throughout the State of Utah, which include trained professionals with backgrounds in medicine, nursing, social work, care coordination, family peer support, audiology, physical and occupational therapies, and speech/language pathology. The lending library has been marketed through the hospital systems, Utah Parent Center/F2F HIC, Help Me Grow Utah, state and local health departments, and local primary care providers. In the past three years, the EHDI state audiologists have completed 80 diagnostic Auditory Brain Response (ABR) tests via telehealth (in the rural areas of Blanding and Roosevelt, Utah), which has allowed for timely diagnosis and intervention for infants who failed newborn hearing screening. Utah is the only state currently providing this public health service.

Although these services have greatly helped families living in these two regions, EHDI data showed other Utah areas would also benefit from our teleaudiology program. Three more tele-audiology sites - two rural and one urban site in an underserved, low income, Latino community were added in 2020-2021.

The Utah EHDI Program has been partnering with local health departments 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. As this is a new venture, CSHCN, EHDI, and early intervention families will be surveyed post-visit to evaluate the patient and family experience with telehealth, ease of use with technology, and overall satisfaction with the lending library concept and tele-audiology service.

The Office of CSHCN Director coordinated with the Utah Parent Center and CSHCN families to continue to educate and coordinate on individuals receiving the SARS-CoV-2 vaccination/booster(s) and being educated on the benefits, side effects, down time, and needs for child care support after receiving the shot.

In February 2021, the Office of CSHCN was introduced to a data integration system which was developed at Cincinnati Children’s Hospital in Ohio, called IDENTITY and we are looking at the possibilities of adapting the system to fit the State of Utah’s needs for data sharing with a variety of stakeholders in order to simplify system care communications between entities and or update current platforms. In the legislative session funding has been identified to improve and collaborate within the Department and therefore, we will wait to update our data sharing system(s) until leadership determines the communication system(s) for the new agency.

Care coordination, on a local level, brings into focus the understanding of community; culture and local customs; and a knowledge of supports, services, and specialists in the area. Care coordinators work with families of children who have not met prescribed well-child visits to work through 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 to ensure clear communication and follow-through methods to reduce loss to follow-up.

The Office also has external partnerships with other State agencies which are working toward reducing redundancies, creating data sharing agreements, utilizing CHARM, holding quarterly meetings and working towards utilizing the clinical Health Information Exchange (cHIE) electronic record to share records in a one-stop shared resource and incorporating the ASQ screeners in CHARM. Additionally, other platforms such as: Hi-Track, monthly meetings, data sharing agreements, CHARM, and shared resources to create a system which flows smoothly for Office employees are utilized.

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.

The 2+ years of COVID-19 allowed for broader statewide collaborations. With moving all meetings to both remote and hybrid, in offering an online forum and/or in-person, programs have seen an increase in partner participation in meetings. This has been especially noticed by our partners in rural areas of the state who can participate without a long drive. Feedback received has supported the online forum for meetings as it is found to be more efficient and time saving with the ability to be as effective as meeting in-person.

The Early Childhood Utah Program has seen an increase in engagement from partners due to the online format for meetings. This has increased collaboration occurring within state and partner programs. Since the COVID-19 pandemic began and persisted (2020 and 2021), Ages and Stages Questionnaire Third Edition (ASQ-3) screens submitted to the UDHHS ASQ Online Enterprise Account have declined by 37% (compared to 2019). Due to a shift in priorities related to pandemic response, one local health department reduced ASQ-3 screens submitted online from 3,476 in 2019 to 316 in 2021. This program’s decrease in submitted ASQ-3 screens accounts for 90% of the decrease experienced. However, during the same timeframe, there has been a 35% increase in ASQ Social Emotional screeners submitted to the Department account by all providers.

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 NPMs/ESMs/SPMs 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 administers the WESTT system to track Utah’s NPMs/ESMs/SPMs as these evolve or activities change; the WESTT system must be 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, creating a Department of Health and Human Services (UDHHS). Tracy Gruber was appointed by Governor Cox as director of the newly formed UDHHS.

The Bureaus of Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) were housed in the Division of Family Health and Preparedness (DFHP). With the new merged organizational structure, the “Bureaus” are now called “Offices” and are now in the new Division of Family Health, which also includes the Office of Coordinated Care and Regional Supports. MCH/CSHCN remain the lead “Offices” responsible for the administration of Title V activities. We are pleased to announce that Noël Taxin was appointed as the new Director for the newly formed Division of Family Health. Starting July 1, 2022, a new Division structure will be implemented and in next year's application we will explain the changes and stability established within the new structure.

The Office of Maternal and Child Health is headed by a new Office Director, Laurie Baksh and the Office of Children with Special Health Care Needs is headed by a new Office Director, Amy Nance. Lynne Nilson, former Title V MCH Director will retire in September 2022.

Office of Maternal and Child Health:

A new MCH Epidemiology manager started in October 2021 and replaced the outgoing manager who retired in May 2021. The SSDI grant coordinator position is currently vacant, but in the recruitment process.

Office of Children with Special Health Care Needs:

The Office of CSHCN has had minimal turnover this year. The ISP Psychologist left employment in January 2022 and a few in the foster care system retired but we were able to replace those positions with new members to join the team. Lastly, with the ever changing Department structure changes to the system, moving locations, and reducing our space significantly, we have had to look at certain positions, reduce them, and/or redesign the job descriptions. Overall this year we have maintained the CSHCN staffing and continued service provision with quality.

Office of Health Promotion and Prevention:

The Bureau of Health Promotion changed to the Office of Health Promotion and Prevention as a result of the merger. This Office did not see significant staffing changes in this year. The former Healthy Living through Environment, Policy, and Improved Clinical Care (EPICC) Program changed its name and is now the Healthy Environments Active Living (HEAL) Program.

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

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.

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.

2. Each year when the federally available data (FAD) is made available, staff in the Data Resources Program (DRP) carefully review the data for trends, whether objectives for NPMs were met, and whether there are disparities in the FAD. DRP also works closely with the core writers for each NPM to determine whether changes need to be made to targets. If changes are needed, DRP uses a set of standardized tools developed by the National Center for Health Statistics to set new targets and provides them to the core writers.

3. Needs assessment activities include updating MCH/CSHCN topic reports on Utah’s Public Health Indicator-Based Information System (IBIS-PH) 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 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.

4. 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.

5. Programs within the offices of MCH and CSHCN collaborate to identify data gaps and to develop and conduct ongoing assessments to collect such data. One identified data gap in 2023 involved the lack of ongoing surveillance of severe maternal morbidity (SMM) in Utah. SMM is emerging as an important measure in efforts to prevent maternal mortality and address other maternal health inequities. MCH published a report on SMM several years ago, but there had not been any systematic tracking of SMM since then. The Data Resources Program (DRP) and Maternal and Infant Health Program (MIHP) worked with the Division of Data, Systems, and Evaluation (DDSE) to create a new IBIS-PH indicator on SMM, which was published in October of 2023. DRP is also in the process of obtaining a data sharing agreement with DDSE to obtain several years of hospital discharge data that will be used for a more comprehensive report on SMM.

6. DRP/SSDI worked with a public health associate in the Office of Emergency Medical Services and Preparedness to develop and disseminate emergency planning fact sheets with estimates of the number of pregnant women by local health department (using a CDC developed methodology), the estimated number of children ages 0-5, 6-11,and 12-17 and the number of children with special health care needs using Census and National Survey of Children’s Health data.

7. DHHS 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 are accomplished 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 director represents Title V programs. Prior to the meeting, the SSDI project director 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 2023-2024 related to MCH/CSHCN populations:

Mental health outcomes following mistreatment during childbirth - November 2023
CDC Perinatal Quality Collaborative Cooperative Agreement - January 2024
Maternal Resource Guide - January 2024
WIC cash value benefit, fruit, and vegetable purchases - January 2024
Out-of-hospital (OOH) birth outcomes in Utah, 2016-2021 - February 2024
Early Hearing Detection and Intervention (EHDI) service plan - March 2024
Diversity in Developmental Screening - May 2024

8. 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 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 DHHS, Intermountain Health, University of Utah Health, the Utah Parent Center, and the pediatric and adult community.  Many individuals 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.

9. The Office of Early Childhood oversees the Preschool Development Grant (PDG). A comprehensive statewide PDG early childhood needs assessment was conducted in 2024 and the office is currently working on a strategic plan to be completed in summer of 2024. Information gathered through the PDG needs assessment will be used to inform the current Title V needs assessment.

10. Collaboration and partnership with the Utah Parent Center (UPC) enables the state’s awareness of the needs and issues affecting CSHCN families statewide. The CSHCN director meets monthly with the director and associate director from the UPC to regularly coordinate and collaborate.

Concerning changes in Utah’s MCH/CSHCN populations

The frequency of people reporting perinatal mental health conditions continues to be of concern as this number has increased over the past few years. The proportion of women reporting anxiety before pregnancy increased from 27.8% in 2019 to 40.3% in 2022. Those reporting depression before pregnancy also experienced a similar, though less extreme, increase during the same period, increasing from 17.6% in 2019 to 24.5% in 2022. Anxiety during pregnancy also increased from 28.1% in 2019, 35.0% in 2020 and 37.9% in 2022. Postpartum depressive symptoms declined slightly from 16.2% in 2021 to 15.0% in 2022. These trends are likely influenced by a variety of factors, including the COVID-19 pandemic. This data supports the need for continued focus on perinatal mood and anxiety disorders. To help address these issues, UWNQC has chosen to implement the AIM Perinatal Mental Health Conditions safety bundle. The UWNQC team will work with enrolled hospitals to start work on the safety bundle in 2024 and will collect process, structure, and outcome data to evaluate the implementation and success of the bundle.

Like the nation, Utah is monitoring rising rates of syphilis among women of reproductive age and pregnant women. Within DHHS, the HIV/STI Elimination, Analysis, Response and Treatment (HEART) program leads surveillance and prevention work for syphilis. The work of the HEART program focuses on education, treatment access, prenatal care, data, and screening/disease intervention specialists. Staff from the Office of MCH and the HEART program meet to discuss opportunities for collaboration and we are currently working to assess prevention needs across the state. The HEART program, in conjunction with the Utah Birth Defect Network within the Office of CSHCN, has applied for funding through the CDC's Epidemiology and Laboratory Capacity (ELC) Surveillance for Emerging Threats to Mothers and Babies Network (SETNET) grant to expand and strengthen congenital syphilis surveillance within Utah.

Changes in Utah’s Title V capacity and systems of care

In the past 4 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.

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.

The Office of CSHCN programs strive to coordinate care for the children, adolescents, and families served throughout the State. The ISP contracts with 4 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. In a new partnership with Utah Department of Workforce Services (DWS) Office of Refugee Services (ORS), ISP received federal pass-through funding from the Office of Refugee Resettlement to provide care coordination for Afghan children at birth through age 5 to facilitate connection with early childhood educational, medical, behavioral health, social services, and community resources in order to ensure their children are prepared to attend kindergarten.

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.

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 advises the offices 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.

The state did not provide any content for this Narrative Section.

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