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.

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.