Utah maternal and child health and children with special healthcare needs, statewide needs assessment 2020

The Statewide Maternal and Child Health Needs Assessment for Utah conducted for the HRSA Title V Block Grant. This was a joint effort of the Utah Department of Health and the University of Utah. In; Utah, the MCH Block Grant program focuses its activities in five domain areas including; 1); Women/Maternal Health, 2) Perinatal/Infant Health, 3) Child Health, 4) CSHCN, and 5) Adolescent; Health. The Process was led by the UDOH Bureaus of Maternal and Child Health and Children with; Special Healthcare Needs

Utah Maternal and Child Health and Children with Special Healthcare Needs, Statewide Needs Assessment 2020 July 22, 2020 This Report was produced by the University of Utah Division of Public Health Sharon Talboys, PhD, MPH (Principal Investigator) Kimberley Shoaf, DrPH (Co-Investigator) Steven Godin, PhD, MPH (Co-Investigator) FeliAnne Hipol, MPH (Co-Investigator) In Partnership with the Utah Department of Health Bureaus of Maternal and Child Health and Children with Special Healthcare Needs i Unit Leads and Staff in the Bureau of Maternal and Child Health and the Bureau of Children with Special Healthcare Needs at the Utah Department of Health provided critical guidance, furnished data, conducted all quantitative surveys, and assisted in the interpretation of qualitative themes, and assisted with editing. Project Leadership Lynne Nilson, MPH, MCHES, Bureau Director, Maternal and Child Health Noël Taxin, MS, Bureau Director, Children with Special Healthcare Needs Domain and Team Leaders Laurie Baksh, Maternal and Infant Domain Amy Nance, Maternal and Infant Domain Eric Christensen and Noël Taxin, CSHCN Domain Nicole Bissonette, Child and Adolescent Domains Anna Fondario, Adolescent Domain Rebecca Fronberg, Child Domain Heather Sarin, Needs Assessment Project Lead Data Analysis Shaheen Hossain, PhD, Program Manager, Data Resources Program Michelle Silver, Data Resources Program Robert Satterfield, Data Resources Program Needs Assessment Leadership Team and Contributors Melinda Alexander, Teresa Brechlin, Aubree Boyce, Danielle Conlon, Brooke Dorff, Christine Evans, Frances Favella, Rebecca Fronberg, Elizabeth Gerke, Luisa Hansen, Bonnie Hardy, Michelle Hoffman, Rene Hunter, Katrina Jensen, Colin Kingsbury, Barbara Leavitt, Michelle Martin, Carol Morrell, Marie Nagata, Lauren Neufeld, Chuck Norlin, Brittney Okada, Matthew Orbain, Kali Ottesen, Nickee Palacios, Christine Perfilli, Gina Pola-Money, Gregg Reed, Carolyn Reynolds, Stephanie Robinson, Al Romeo, Sarah Roundy, Heather Sarin, Julie Southwick, Stephanie Sund, Nicole Stone, Tania Tetz, Joey Thurgood, Mindy Tueller, Vicki Wilkins, Shannon Wnek ii Project Leadership at Division of Public Health, University of Utah Sharon Talboys, PhD, MPH, Asst. Professor, Principal Investigator Co-Investigators Kimberley Shoaf, DrPH, Professor Steven Godin, PhD, MPH Visiting Professor FeliAnne Hipol, MPH, Doctoral Student Anne Berger - Project Support Student Co-Authors Noel Christian Corrie Harris LaShai Jake Danielle Kaiser Marcy Leakehe Ashley Packard Erica Petrlik Randy Hines Ishita Singh Wen Wen Tian Laney Whitney Focus Area(s) CSHCN Maternal Mental Health Maternal Mental Health Adolescent Health Adolescent Health CSHCN CSHCN PRAMS Adolescent Health, CSHCN CSHCN Maternal Mental Health Student Contributors Margaret Carlson Page Checketts Kaitlyn Child Matthew Ellsworth Kristina Gale Kebba Kah Emily Measom Nana Mensah Morgan Perkins Megan Petersen Elizabeth Pulsipher Michelle Seage Felix Vivanco Jasmine Wardle Nathan Williams Kathryn Young iii ACKNOWLEDGEMENTS Participants To the over 3,000 people who participated in the survey and those who gave their time for a face to face interviews and meetings, your contributions are important and appreciated. You help give voice to women, children, and families across Utah: • • • • • • Parents and Caregivers Health Service Professionals Community Organizations Public Health Professionals Mental Health Professionals Stakeholders and Partners iv LIST OF ACRONYMS ABA ABS ACEs ACS AI/AN CSHCN DRP DSPD ESM FGD HRSA IRB MAPP MCH MIECHV NA NALT NICU NIS NOM NPM NSCH NVSS P-5 PRAMS SAS SPM SPSS UDOH UIHAB YRBSS Applied Behavior Analysis Alternative Behavior Strategies (for autism) Adverse Childhood Experiences American Community Survey American Indian/Alaska Native Children with Special Healthcare Needs Data Resources Program Division of Services for People with Disabilities Evidence-based Strategy Measure Focus Group Discussion Health Services and Resource Administration Institutional Review Board Mobilizing for Action through Planning and Partnerships Maternal and Child Health Maternal Infant and Early Childhood Home Visiting Needs Assessment Needs Assessment Leadership Team Neonatal Intensive Care Unit National Immunization Survey National Outcome Measure National Performance Measure National Survey of Children’s Health National Vital Statistics System Perinatal to age 5 Pregnancy Risk Assessment Monitoring System Statistical Analysis System State Performance Measure Statistical Package for the Social Sciences Utah Department of Health Utah Indian Health Advisory Board Youth Risk Behavior Surveillance System v LIST OF FIGURES Figure 1: Highest Need Areas for Home Visiting per HRSA Standard Method, 2019……………………. 6 Figure 2. Final Coding Structure for Key Informant Interviews by Topic and Emergent Theme ….. 12 Figure 3. Key Informant Interviews Conducted by Health District ……………………………………………… 17 Figure 4. Key Informant Interviews Conducted by City or Town ……………………………………………….. 17 Figure 5: History of the Restructuring of the Utah Bureau of Children with Special Healthcare Needs, 2015-2020 ……………………………………………………………………………………………………………………. 42 Figure 6. Top Challenges Impacting CSHCN, Parent Survey, Utah 2019 …………………………………….. 48 Figure 7. Participation in CSHCN Related Services, CSHCN Parent Survey, Utah 2019 ………………… 50 Figure 8. MAPP (Mobilizing for Action through Planning and Partnerships) Model with Annotated Modifications for the Utah Statewide Public Health Needs Assessment, 2020 ……………………………. 62 vi LIST OF TABLES Table 1. Participation in Utah MCH/CSHCN Needs Assessment Activities, 2019-2020 ……………………….. 2 Table 2. Priority health Issues and services of MCH/CSHCN Stakeholder Survey Participants, 2019 ….. 3 Table 3. Participation in Utah MCH Needs Assessment Activities, 2019-2020 …………………………………… 13 Table 4. Characteristics of the MCH/CSHCN Stakeholder Survey Respondents, 2019 ………………………… 14 Table 5. Characteristics of Participant in the CSHCN Parent Survey ………………………………………………….. 15 Table 6. Summary of Key Informant Interviews by Type and Participation ………………………………………. 16 Table 7. Focus Group Discussions by Type, 2019-2020 ……………………………………………………………………… 18 Table 8. Characteristics of Utah PRAMS Participants and Commenters, 2013-2017 …………………………… 19 Table 9. Organizations Represented in Utah Indian Health Advisory Board Discussions ……………………. 20 Table 10. Stakeholder meeting attendance ……………………………………………………………………………………… 20 Table 11. Summary of Main Themes by Crosscutting and Domain Specific Issues ……………………………… 21 Table 12. Top 10 Ranked Maternal Health Issues from Stakeholder Survey, Utah, 2019 ……………………. 28 Table 13. Top 10 Ranked Infant Health Issues from Stakeholder Survey, Utah, 2019 ………………………… 34 Table 14. Top 10 Ranked Child Health Issues from Stakeholder Survey, Utah, 2019 ………………………….. 38 Table 15. Top 10 Ranked Health Issues for Children with Special Healthcare Needs from Stakeholder Survey, Utah, 2019 ……………………………………………………………………………………………………………………………. 41 Table 16. Conditions of Children with Special Healthcare Needs, CSHCN Parent Survey, Utah, 2019 … 47 Table 17. Health Information Preferences, CSHCN Parent Survey, Utah 2019 …………………………………… 51 Table 18. Top 10 Ranked Adolescent Health Issues Stakeholder Survey, Utah, 2019 ………………………… 52 Table 19. Priority Issues and Services of MCH/CSHCN Stakeholder Survey Participants, 2019 …………. 67 vii TABLE OF CONTENTS 1. Executive Summary ………………………………………………………………………………. 1 2. Background ………………………………………………………………………………………….. 5 3. Methods ……………………………………………………………………………………………… 3.1 MCH / CSHCN Stakeholder Survey ……………………………………………….. 3.2 CSHCN Parent Survey …………………………………………………………………….. 3.3 Key Informant Interviews ………………………………………………………………. 3.4 Focus Group Discussions ………………………………………………………………. 3.5 PRAMS Survey – Qualitative Review ………………………………………………. 3.6 Tribal Consultation ……………………………………………………………………….. 3.7 Regional and Statewide Stakeholder Meetings …………………………….. 7 7 8 9 9 10 10 11 4. Results …………………………………………………………………………………………………. 4.1 Participation and Characteristics of Participants ……………………………. 4.2 Overarching Themes ……………………………………………………………………… 4.3 Women …………………………………………………………………………………………. 4.4 Infants …………………………………………………………………………………………… 4.5 Children ………………………………………………………………………………………… 4.6 Children with Special Healthcare Needs ……………………………………….. 4.7 Adolescents …………………………………………………………………………………… 13 13 21 28 34 38 41 52 5. Conclusion …………………………………………………………………………………………… 62 6. Recommendations ……………………………………………………………………………….. 69 7. References …………………………………………………………………………………………… 70 Attachments A – Maternal and Child Health Priorities for 2016-2020 ……………………………….. B – 2019 MCH Indicator Report for Utah …………………………………………………….. C - Tribal Perspectives on Maternal and Child Health (MCH) in Utah ………….. D – Proceedings of the 2020 Statewide Maternal and Child Health Stakeholder Summit …………………………………………………………………………………… E - MCH/CSHCN Stakeholder Survey – Detailed Results (Full Data Tables) …. F – CSHCN Parent Survey – Detailed Results (Full Data Tables) …………………… 71 76 103 109 115 138 viii 1. EXECUTIVE SUMMARY The Statewide Maternal and Child Health Needs Assessment for Utah conducted for the HRSA Title V Block Grant. This was a joint effort of the Utah Department of Health and the University of Utah. In Utah, the MCH Block Grant program focuses its activities in five domain areas including; 1) Women/Maternal Health, 2) Perinatal/Infant Health, 3) Child Health, 4) CSHCN, and 5) Adolescent Health. The Process was led by the UDOH Bureaus of Maternal and Child Health and Children with Special Healthcare Needs. A variety of MCH/CSHCN programs are implemented with Title V Block grant funds. This assessment focused primarily on the above five domain areas and included surveys, interviews, focus group discussions, and stakeholder activities to describe and prioritize MCH/CSHCN issues in Utah. Approach A community engaged approach was used to gather input from over 3,000 people through a variety of modalities including online surveys, face to face interviews and focus group discussions, and interactive stakeholder meetings. Information gathering was conducted from January 2019 – February 2020. The overall process and milestones included:  Needs Assessment Leadership Team (NALT) created (January 2019)  Online MCH/CSHCN Stakeholder Survey and Parent CSHCN Survey conducted (Apr/May 2019)  Key Informant Interviews conducted (June/Nov 2019)  Focus Group Discussions conducted (Oct 2019 – Feb 2020)  Tribal Consultation with Utah Indian Health Advisory Board (Aug 2019 – Jan 2020)  Preliminary Report drafted (October 2019)  Interactive Regional Stakeholder Meetings conducted (Oct/Dec 2019)  On-site Training and Technical Assistance for NALT by Georgetown University’s National Center for Education in Maternal and Child Health (Jan 2020)  Statewide Summit and Performance Measure Selection (Feb 2020)  Final Analysis (Mar/May 2020)  Final Report published (July 2020) Methods Mixed methods of quantitative and qualitative data collection included online surveys, key informant interviews, focus group discussions, and reviews of secondary data. Regional stakeholder meetings and a statewide summit were used to present preliminary findings and interpret findings in an iterative process, with stakeholders. Participation in the assessment, by method, is presented in Table 1. Results Over 3,300 people statewide participated in either a survey, interview, focus group discussion, or stakeholder meeting. Parents, public health, healthcare, and social care workers, and community leaders, were common types of participants. Table 1 outlines the number of participants by assessment activity. 1 Table 1. Participation in Utah MCH/CSHCN Needs Assessment Activities, 2019-2020 Activity # Participants 1 MCH/CSHCN Stakeholder Survey Online survey 1,892 2 CSHCN Parent Survey Online survey 1,161 3 Tribal Consultation 3 meetings 15* 4 Focus Group Discussions 6 FGDs 48 5 Key Informant Interviews 52 interviews 59 6 Regional Stakeholder Meetings 5 meetings 86 7 Statewide Summit 1 Summit 87 3,348 *estimated attendance Participants identified top priority issues, such as specific MCH/CSHCN topics or services, but they also described issues that are systemic and overarching. Top concerns are listed next, but in no particular order as they are clearly interrelated issues. Top Concerns 1. Mental Health – Mental health, including perinatal depression, depression, anxiety, and suicide were top concerns in all domain areas with the exception of the infant domain. According to the 2019 UDOH Maternal, Infant & Child Health Indicators in Utah Report, o 14.7% of women report postpartum depression o 17.1% of adolescents reported making a plan about how they would attempt suicide 2. Violence/Abuse/Neglect – Violence, primarily family violence, was a priority concern in all five domains. Types of violence include intimate partner violence, child abuse and neglect, lack of parental involvement, and bullying of children and adolescents. According to the 2019 Utah Indicator Report, o 19.4% of adolescents reported being bullied on school property 3. Access to Care/Health Insurance – Access to care related to affordability, including affordable health insurance, was a key issue for women, infants, and CSHCN domains. It was not noted as a priority for children and adolescents, but was a particular concern of parents with CSHCN. According to the 2019 Maternal, Infant & Child Health Indicators in Utah Report, o 14.7% of women of reproductive age who reported being uninsured o 38.9 % of children and adolescents are not continuously and adequately insured 4. Access to Care/Due to limited care – A variety of types of care were described as very limited and sometimes non-existent. This was the top concern for the CSHCN domain, where specialty medical care is extremely limited, especially in rural areas, and developmental screening is not comprehensive. Mental health and behavioral health services were described as very limited and as a system that is not nearly robust enough to meet the needs. Other programs and services that are wanted and needed, but limited in scope include family planning, sexual health education for youth, quality and affordable childcare and afterschool care, school nursing, dental care, and training for parents/parenting skills. 2 o o o 44.9% of children ages 6-9 have received dental sealants in one or more of their permanent molar teeth 16.4% of children in Utah have special healthcare need 18.4% of CSHCN ages 0 – 17 have a medical home Programs valued/wanted by participants - Based on the types of priorities described by survey participants, Table 2 lists specific health programs or services valued by participants from the MCH/CSHCN online survey (N=1,892). Table 2 lists specific health issues and services of interest, aside from broader issues of access and systems. Table 2. Priority health Issues and services of MCH/CSHCN Stakeholder Survey Participants, 2019 Domain Priority Issues – Specific to health services or topics Women/Perinatal Mental Health (perinatal depression), access to family planning, domestic violence, parenting skills, substance use, immunizations Infants Immunizations, abuse/neglect, developmental delays, environmental exposures (e.g. air quality), nutrition, breastfeeding Children Depression, abuse/neglect, parental involvement, immunizations, childcare, afterschool care, school nursing, nutrition/overweight, dental care, air quality Adolescent Depression and anxiety, suicide, sex education, drug use, vape/tobacco, social isolation, abuse/neglect, overweight, alcohol, school nursing, physical activity CSHCN Access to CSHCN services/specialty care and screening, autism services, care coordination, early intervention, parent support, mental health, developmental screening, abuse/neglect, suicide, bullying, community and recreation opportunities Systems Issues - Systems issues were often described by stakeholders during interviews and focus groups, using terms such as ‘social determinants of health’, ‘health inequities or disparities’, and lack of ‘universal healthcare’. Systems issues included problems such as poverty, geography/rurality, and the lack of affordable and accessible healthcare for everyone. Groups described as vulnerable included; • • • People with low income, but with low-wage jobs so they do not qualify for Medicaid, Immigrants fearful of seeking any governmentally funded service, and Underrepresented minorities and their children. Socio-political norms were described as prevailing values of self-reliance and small government and used as a rationale to limit funding to health and social programs. Utah ranks among the lowest states in funding per capita for education, public health, school nursing, and historically has not been in favor of Medicaid expansion. Participants lamented that Utah describes itself as a family state, yet it does not pay for important services to help families thrive. Participants felt strongly that Utah needs to invest more funding into MCH/CSHCN programs. The Utah Indian Health Advisory Board made a specific recommendation to invest more into MCH/CSHCN programs. Despite limited funding, public health and other care workers were described as hard working and doing more with less. 3 Recommendations It is recommended that the Utah Department of Health use this report to guide the selection of State and National Performance Measures that will address some of the top MCH/CSHCN priorities. UDOH should continue organizing for success with its partners and formulate goals and specific objectives with key metrics. While UDOH should focus on specific MCH/CSHCN priorities to make concerted progress, they should consider addressing broader issues that are barriers to improvement, such as lack of funding. This may require more effort in the areas of public health advocacy and policy. Partnerships could strengthen this effort. In addition to MCH/CSHCN focused SPM and NPMs, UDOH should work with partners to: • • • • • Address social determinants of health and intergenerational poverty; Improve access to healthcare and affordable health insurance; Better fund Children with Special Healthcare Needs and leverage new telehealth efforts; Address family violence, abuse, neglect and increase affordable childcare, and Work across sectors to expand needed mental health services. 4 2. BACKGROUND Utah’s 2020 Maternal and Child Health (MCH/CSHCN) Needs Assessment was conducted in coordination with the Health Services and Resource Administration (HRSA) Maternal Infant and Early Childhood Home Visiting (MIECHV) grant needs assessment from January 2019 through April 2020. The Utah Department of Health (UDOH) contracted with the Division of Public Health at the University of Utah to conduct qualitative data gathering, facilitate stakeholder meetings, assist UDOH with survey analysis, and to prepare the final report. Over 3,000 stakeholders from across the state provided feedback through online surveys, interviews, focus group discussions, and stakeholder meetings. Both the Title V Maternal and Child Health (MCH) Services Block Grant legislation (Section 505(a)(1)) and MIECHV grant require the state of Utah to submit a comprehensive statewide Needs Assessment every five years that identifies (consistent with the health status goals and national health objectives) the need for: 1) Preventive and primary care services for pregnant women, mothers and infants, 2) Preventive and primary care services for children, and 3) Services for children with special health care needs. Findings from the Five -Year Needs Assessment should serve as the cornerstone for the development of a five year Action Plan for the State MCH Block Grant. The Bureau of MCH at the Utah Department of Health published Maternal and Child Health priorities for 2016-2020 which are summarized in Attachment A. The Title V Maternal and Child Health Program was established in 1935 through the Social Security Act. The Program supports the health and well-being of pregnant and nursing women, infants, children, and Children with Special Healthcare Needs (CSHCN). In Utah, the Title V MCH Block Grant program focuses its activities in five domain areas including 1) Women/Maternal Health, 2) Perinatal/Infant Health, 3) Child Health, 4) CSHCN, and 5) Adolescent Health. The Bureau of Maternal and Child Health now oversees the Home Visiting Program, which includes the MIECHV Grant Program. While not a main focus of this report, home visiting is discussed in this report because its services are not mutually exclusive from maternal and child health services, in fact, there is significant overlap. Several Utah communities have received funding through this program to offer evidence-based home visiting services that last from pregnancy until the infant turns three. The map in figure one shows the areas of highest need for home visiting per the HRSA standard calculation method, which takes into account various social, economic, and health indicators by county. Key Informants were recruited primarily from eight of the highest need counties per the MIECHV standard method. 5 Figure 1: Highest Need Areas for Home Visiting per HRSA Standard Method, 2019 6 3. METHODS A community-engaged approached was used to gather input from a variety of stakeholders all across Utah using participatory and mixed methodologies. Methods included online quantitative surveys, qualitative interviews and focus group discussions, and participatory stakeholder meetings. The sequence began with online surveys in early 2019, followed by key informant interviews and focus group discussions from May 2019 through April 2020. Preliminary results were shared with stakeholders in November 2019 and discussed at regional stakeholder meetings held from November 2019 to January 2020. Evaluators also attended three Utah Indian Health Advisory Board meetings to discuss findings and gather input and recommendations from board members between September 2019 and December 2020. Specific methods for each data gathering activity is described next. Needs Assessment Planning Process As part of the Title V 2020 Maternal and Child Health (MCH) Needs Assessment, a Needs Assessment Leadership Team (NALT) was established to oversee the development and implementation of the 2020 MCH Need Assessment (NA) activities. The leadership team consisted of the MCH and Children with Special Health Care Needs (CSHCN) Bureau Directors, a Needs Assessment Project Leader, CSHCN Family Director, MCH Epidemiologist, Maternal and Infant Health Program Manager, Data Resources Program (DRP) Epidemiologists. In order to help inform Utah’s 2020 MCH NA, a literature review of NA methodologies and processes used by other states was conducted. Review included documentation of the processes used in selection of national and state priorities. This review provided insight into potential methods for Utah to use. Noteworthy processes were presented to NALT and followed with a discussion on what Utah would want to adopt. Additionally, through this review, where available, survey instruments were reviewed to look for opportunities to enhance and compliment Utah’s surveys. Secondary Data Collection / Indicator Report A review of multiple data sources was conducted and compiled to create an extensive indicator report of over 270 variables outlining measures related to Utah's MCH and CSHCN populations. Data sources included the American Community Survey (ACS), Pregnancy Risk Assessment Monitoring System (PRAMS), National Vital Statistics System (NVSS), National Immunization Survey (NIS), National Survey of Children’s Health (NSCH), and Youth Risk Behavior Surveillance System (YRBSS). Where available, rates were also stratified by race and ethnicity, and compared to Healthy People 2020 goals and the nation overall. The 2019 MCH Indicator Report for Utah (Attachment B) was shared with the NALT to provide an overview of the current strengths and weaknesses in the health status of Utahans. The report was used in selection of populations and topics to address in key informant interviews and focus groups. Additionally, the report was used by domain leaders to help identify questions for two surveys, MCH/CSHCN Stakeholder Survey and the CSHCN Parent Survey. 3.1 MCH/CSHCN Stakeholder Survey Methods The Utah Department of Health conducted an online MCH/CSHCN Stakeholder Survey in English and Spanish using REDCap, a secure, web-based data capture application hosted at the Utah Department of Health (Harris, et al, 2009). The MCH/CSHCN Stakeholder Survey was developed following review of the 2019 MCH Indicator Report and consideration of issues identified through previous community feedback. 7 Following this review, approximately thirty issues for each health domain (i.e., women, infants, children, CSHCN, and adolescents) and an overarching area, access to health care, were selected by subject matter experts or “domain leaders” in collaboration with the NALT. The survey was designed so that participants could choose to only respond to the domain areas of interest. In total, there were thirty-five survey items. Following selection of domains of interest, participants were asked to rank and prioritize up to seven issues for each health domain. With the exception of the overarching area, access to health care, three open-ended questions were included for each domain: (1) “What is the ONE most important health need or problem facing (health domain) in your community?”; (2) “In one sentence, please list ANY OTHER health issues you consider to be a significant problem for (health domain) in your community.”; (3) “What services would you like to see offered by the health department to help (health domain) in your community?” Demographic characteristics of the participant were also collected, allowing for cross-tabulations to be conducted based on stakeholder role (e.g., healthcare professional, parent or guardian, and policymaker), age, race, ethnicity, and zip code. The survey was distributed to stakeholders in Utah using a list of emails gathered by the Utah Department of Health. The list included key partners, stakeholders, parents, and others who have contact with the UDOH. This list, with approximately 200 emails, was used to invite participation and requested that they forward the questionnaire to anyone else that may be interested. A link to the survey was also posted on the UDOH website and also made accessible to the public via Facebook, where it was “Boosted” to increase visibility to potential participants. The English version of the MCH survey was open from March 15 – April 15, 2019 and the Spanish version was open from April 11 – May 14, 2019. Due to the snowball sampling method and public posting of the survey, a response rate cannot be calculated. Responses were downloaded from REDCap in a CSV file and then uploaded and analyzed descriptively using SAS Version 9.4 (SAS Institute, Inc, Cary, NC). Openended responses in both English and Spanish were analyzed qualitatively using Dedoose Version 8.2 (SocioCultural Research Consultants Inc). 3.2 CSHCN Parent Survey Methods The Utah Department of Health’s Bureau of CSHCN conducted an online survey of parents of children with special healthcare needs. Following review of the 2019 MCH Indicator Report, CSHCN domain leaders, family to family representatives, members of the Family Advisory Committee, and CSHCN Stakeholder Group convened several meetings to identify survey questions. In total, there were 38 items selected for inclusion in the questionnaire. Key items in the questionnaire included demographic characteristics of the participant, selection of applicability of an extensive list of CSHCN conditions to the participant’s child, topics such as access to and utilization of care, insurance status, preferences for information and education, and recommendations for the Bureau of CSHCN. There was also an open-ended question, “Thinking of your family, what is the top challenge impacting your child / children with special health care needs?” Programs within the CSHCN Bureau assisted domain leaders in developing a plan for survey dissemination. The survey was distributed using a list of parent emails maintained by the CSHCN Bureau, Family to Family Health Information Center, and the CSHCN stakeholder group. This list of community members was used for survey recruitment. A link to the survey was posted on the CSHCN Bureau 8 website and also made accessible to the public through Facebook, where it was “Boosted” to increase visibility to potential participants. The survey was conducted in English and open from March 22-April 28, 2019. Due to the snowball sampling method and public posting of the survey, a response rate cannot be calculated. Study data were collected and managed using SurveyMonkey. Responses were downloaded from SurveyMonkey in a CSV file and then uploaded and analyzed descriptively using IBM SPSS Statistics, Version 25.0 and SAS Version 9.4 (SAS Institute, Inc, Cary, NC). Open-ended responses were analyzed qualitatively using Dedoose Version 8.2 (SocioCultural Research Consultants Inc). 3.3 Key Informant Interview Methods Key informant interviews were conducted across the state based generally on eight high need counties per the HRSA Standard Method of assessing high need areas. Each geographic location was stratified by key informants working in various sectors. The goal was to recruit several people from eight counties, including health department personnel, healthcare professionals (clinics and hospitals), mental health professionals, community leaders, and social services professionals. Participants were recruited by the faculty and project staff within the Division of Public Health at the University of Utah using a stakeholder list compiled by the Utah Department of Health. Participants were invited by phone or email and face to face visits were arranged. Phone interviews were scheduled when a face to face interview was not possible. Informed consent was administered to participants prior to the interview and permission to audiorecord was requested. This activity was approved by the UDOH Institutional Review Board (IRB). Notes were taken if audio-recording was not permitted. A topic guide was used that include 1) a description of the person’s role in MCH/CSHCN, 2) MCH needs, 3) MCH/CSHCN successes, 4) characteristics of vulnerable populations, and 5) recommendations for improving MCH/CSHCN. Audio recordings were transcribed and uploaded into Dedoose Version 8.2 (SocioCultural Research Consultants Inc). Charmaz’ Grounded theory was used to identify emergent themes through iterative analyses with researchers, the NALT, and stakeholders (Charmaz, 2006). A summary of the coding structure is provided in Figure 2. 3.4 Focus Group Discussion Methods Six Focus Group Discussions (FGDs) were conducted with members of priority populations including mothers with young children, adolescents, parents of CSHCN, and parents enrolled in Home Visiting Programs that serve pregnant women and families with children through age three. Participants were recruited with assistance from community partners that serve those populations. Adolescent FGDs were stratified by gender identity and one FGD with mothers was conducted in Spanish. All FGDs were conducted in person except one that was conducted by video conference due to COVID19 social isolation guidelines. Participants received a recruitment email and were offered a $20 gift card to their choice of one of three retail grocery stores. Informed consent was administered and FGDs were conducted by a trained facilitator with a discussion guide. Key topics in the discussion guide included experiences with MCH/CSHCN services, perceptions and opinions about MCH/CSHCN needs, MCH gaps and assets, and recommendations for improving maternal, child, and adolescent health in the community. FGDs were recorded with permission, transcribed, and were analyzed qualitatively using Dedoose Version 8.2 (SocioCultural Research Consultants Inc). 9 Charmaz’ Grounded Theory was used to code transcripts. Emergent themes were developed through iterative analyses with researchers, the NALT, and stakeholders. A summary of the coding structure is provided in Figure 2. This activity was approved by the UDOH Institutional Review Board (IRB). Emergent themes were developed through iterative analyses with researchers, the NALT, and stakeholders. This activity was approved by the UDOH IRB. 3.5 PRAMS Survey Qualitative Review The Pregnancy Risk Assessment Monitoring System (PRAMS) survey is administered annually in Utah to a random sample of women who have been pregnant and recently delivered. The survey gathers a variety of information related to risks and experiences of women prior to and during pregnancy including prenatal and postnatal care, physical abuse, social support and stress, infant health care, breastfeeding, among other topics. Participation is via mail or telephone interview. At the end of the questionnaire, participants are asked if they have any additional comments relating to their experiences around pregnancy or health of mothers and babies in Utah. For this study, five years (2013 to 2017) of the open-ended comments were analyzed qualitatively and reported by thematic areas. All comments that did not relate to the question, such as “good job”, “no comment”, or other general phrases were excluded. Comments were imported to Dedoose Version 8.2 (SocioCultural Research Consultants Inc). Charmaz’ Grounded theory was used to identify emergent themes that were coded and summarized descriptively by thematic areas. 3.6 Tribal Consultation Methods The UDOH Bureau of MCH and the University of Utah assessment team entered into a tribal consultation process with the Utah Indian Health Advisory Board (UIHAB) with assistance from the UDOH Office of AI/AN Health Disparities Affairs from June 2019 – Jan 2020. The UIHAB represents Indian Health Services, Tribes, and the Urban Indian Center in Utah. The UIHAB members provided guidance on the data gathering approach and participated in the assessment as key informant/subject matter experts. The data gathering approach included a simplified questionnaire for UIHB members. The questionnaire was administered and discussed as a group at the August, 2019 UIHB meeting in Blanding, Utah and follow-up discussions on results and recommendation were conducted at two subsequent meetings. Copies with postage paid envelopes were also provided to give board members the option to distribute to other community members. The discussion was facilitated by Dr. Sharon Talboys from the University of Utah and notes were taken by her project staff team. Discussion questions included the following: 1. In your opinion, what MCH issues are most important in your community? 2. What is working well in your community to promote MCH health? What services do people like? 3. Can you tell us what life is like or what it’s like for a mother, father, auntie, grandparent, or other caregivers in your community? 4. In an ideal world, what would maternal and child health look like in your community? Participants were also given a reference sheet for the Title V domain topic areas and asked to speak to any of the topics for which they had knowledge. 10 A draft of the proceedings was presented at the November 2019 UIHAB meeting and board members assisted with further interpretation. A final version was reviewed, discussed, and recommendations were added. Findings from this report are integrated into sections of this report and is included in its entirety in Attachment C. 3.7 Regional and Statewide Stakeholder Meetings Five regional stakeholder meetings were held November – December 2019 followed by a statewide stakeholder summit in February 2020. Regional meetings were held in person in Ogden (North), Salt Lake (Central), Cedar City (Southwest), and Moab (Southeast). A fifth “regional” meeting was held virtually by video conference. All regional meetings had remote participation capabilities through phone or video conference. Preliminary needs assessment findings were presented to participants with a Power Point presentation and a preliminary report of findings, published on October 17, 2019, was emailed to meeting participants. Regional stakeholder meetings were designed to engage stakeholders in interpretation of findings to date and to assess consensus about the findings. Nominal Group Processes were used to further prioritize MCH/CSHCN issues. Responses were recorded on flip charts and summarized, and by using PollEverywhere software (www.pollev.com) to elicit individual responses online or by text. Responses were downloaded from PollEverywhere and summarized in meeting proceedings. A statewide summit was held in person with virtual capability where findings from the needs assessment, including previous stakeholder meetings were presented. The NALT unit leads presented their recommendations about the selection of state and national performance measures for the Title V grant. The audience was polled using PollEverywhere to share their input about the recommendations. Participants then broke into interest areas and further developed and presented recommendations. Proceedings of the summit are included in (Attachment D) and informed the recommendations section of this report. The NALT met frequently to discuss preliminary results and to assist in the interpretation of results. Preliminary results were provided to the NALT and other stakeholders during a technical assistance meeting in January 2020. Consultants from Georgetown University’s National Center for Education in Maternal and Child Health provided assistance with how to develop meaningful state and national performance measures, be inclusive, gain insight and feedback from stakeholders for the process. 11 Figure 2. Final Coding Structure for Key Informant Interviews by Topic and Emergent Theme Population • • • • • • • • • • • • • • • • • • Low Income CSHCN Children Disabled Family High risk moms families Homeless Immigrant or Minority or refugee Infant Adolescents Men Native American Pregnant Perinatal Rural Urban Women Incarcerated Underserved Service • • • • • • • • • • • • • • • • • CSHCN Care Coordination and Referrals Community health workers Health Education/Health Promotion Healthcare Home Visiting Immunizations MCH Medicaid Mental Health Parents As Teachers Policy Pregnancy Care and Prenatal Reproductive /Family Planning School Nursing Telehealth WIC – Women Infants Children Strengths or Assets • • • • Strength or Support Named Community Asset Community Success Specific Topics • • • • • • • • • • • • • • • • • • • • • • • • • • • Nutrition Alcohol Breastfeeding Childcare Child Abuse Dental Intimate Partner Violence Intergenerational Poverty Justice system LGBTQ Marijuana Need across lifespan ACEs Opioids or Meth Parenting Skills Perinatal Depression Physical Activity Postpartum Depression Screen time Substance Abuse Suicide Teen Pregnancy Transportation Vaping Bullying Resiliency Sexting or porn Themes • • • • • • • • • • • Funding Assessment research Awareness of Services by Public Health Communication Equity and Inclusion Access Quality Care or Service Recommendations Social Determinants or Context Utilization Workforce Processes Greats Quotes & Stories Barriers Gaps Challenges Health Behaviors/Beliefs Bold terms were main categories assigned and bulleted points were sub-categories. 12 4. RESULTS 4.1 Participation and Characteristics of Participants Overall Participation in Needs Assessment Over 3300 people participated in needs assessment activities across the state. Table 3 summarizes participation in the various assessment methods used by the Needs Assessment team. It is likely that many people participated in more than one activity. Table 3. Participation in Utah MCH Needs Assessment Activities, 2019-2020 Activity # Participants 1 MCH/CSHCN Stakeholder Survey Online survey 1,892 2 CSHCN Parent Survey Online survey 1,161 3 Tribal Consultation 3 meetings 15* 4 Focus Group Discussions 6 FGDs 48 5 Key Informant Interviews 53 interviews 61 6 Regional Stakeholder Meetings 5 meetings 86 7 Statewide Summit 1 Summit 87 3,348 *estimated attendance MCH/CSHCN Stakeholder Survey Participation A total of 1,892 people responded to the online MCH/CSHCN Needs Assessment Survey administered by the Utah Department of Health. Most participants (71.6%) described their primary role as a health professional and 18.8% reported parent as their primary role. Participants were only able to pick one response. Most participants, 84.1% were urban dwellers (N=1309), which is similar to Utah demographics. Most participants were women (83.1% ) and of white race (85.2%). Participation by racial and ethnic minorities included 12.6% Hispanic or Latino, 2% Asian American or Asian, 0.7% African American or Black, and 0.5% American Indian, Native American, or Alaska Native. Missing values were high in several demographic categories, including participant role and race and ethnicity. Full data tables prepared by the UDOH are found in Attachment E. Table 4 summarizes the characteristics of participants in the MCH/CSHCN Stakeholder survey including demographics, role (e.g. parent, healthcare provider, etc), and which domain areas they completed in the survey. Most participants identified as professionals and the most popular category of participation was maternal health. 13 Table 4. Characteristics of the MCH/CSHCN Stakeholder Survey Respondents (N = 1892) n (%)a Participant Role (n = 1309) Healthcare or Public Health Professional Other Professional Parent or caregiver Woman, Youth, Student, Community Member 782 96 246 185 (59.7) (7.3) (18.8) (14.1) Female Male Prefer not to answer Intersex or Other 956 185 7 2 (83.1) (16.1) (0.6) (0.2) White or Caucasian Other Prefer not to answer Multiple Races Asian American or Asian Black, African American, or African American Indian, Native American, Alaska Native 1096 68 42 39 26 9 7 (85.2) (5.3) (3.3) (3.0) (2.0) (0.7) (0.5) Completed Spanish Language Version 240 (14.5) Hispanic Ethnicity (n = 1236) 156 (12.6) Urban Rural 1089 206 (84.1) (15.9) Maternal Health Child Health Access to Care Infant Health Adolescent Health Children with Special Health Care Needs 1025 812 678 638 609 423 (54.2) (42.9) (35.8) (33.7) (32.2) (22.4) Gender (n = 1150) Race (n = 1287) Respondent Residence (n = 1295) Domain Respondents (n = 1892) Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercent calculation excludes missing data Table 5 describes the characteristics of participants of the online survey designed specifically for parents of CSHCN. Most respondents identified as mothers, lived in urban areas, and were white. There was a fairly even distribution of income levels. 14 CSHCN Parent Survey Participation Table 5. Characteristics of Participant in the CSHCN Parent Survey (N=1,161) n % Mother Father Guardian or Foster Parent Adolescent or Youth Number of CSHCN in household 0 1 2 3 or more Residence Urban Rural 891 46 22 1 76.7 4.0 2.0 0.1 45 788 226 81 3.9 69.1 19.8 7.1 849 133 74.1 11.6 Hispanic ethnicity (n=975) 81 0.1 906 2 11 6 30 30 19 92.4 0.2 1.1 0.6 2.6 3.1 110 144 210 281 224 11.4 14.9 21.7 29.0 23.1 Parent Role Race (n=980) White Black/African American Asian American India or Alaska Native Native Hawaiian/Pacific Islander Multiple races Other Income (n=969) Under $20,00 $20,000- $39,999 $40,000-$59,999 $60,000-$99,999 Over $100,000 15 Key Informant Interview Participation A total of 61 key informants participated in 53 interviews. In some cases, participants had invited others in their workplace to participate, which explains some multi-participant interviews. Interview and participant characteristics were collected for the primary interviewee only and these characteristics are presented in Table 6. Rural participants and health department leaders were over-represented in the sample. Table 6. Summary of Key Informant Interviews by Type and Participation (N=61) Interviewer:Participant Interview Type Number of Interviews Number of Participants 1:1 48 48 1:2 4 8 n % Location Rural Urban Mixed Male Other 31 17 5 17 1 58.5 32.1 9.43 32.1 1.89 Organization Health Department Healthcare Clinic Community Org / Non profit Hospital Mental Health Social Services School/District Home Visiting 27 7 6 4 4 2 2 1 50.9 13.2 11.3 7.55 7.55 3.77 3.77 1.89 Job Role Health Officer Healthcare Provider Manager/Coordinator Specialist/Professional Nursing Director WIC Health Promotion Community leader/organizer Mental health provider Teacher 8 8 7 7 6 5 4 4 3 1 15.1 15.1 13.2 13.2 11.3 9.43 7.55 7.55 5.66 1.89 1:5 1 5 N 53 61 *Participant characteristics are presented for the primary interviewee only 16 Key informant interviews were conducted around the state. Figures 3 and 4 describe the number of participants by local health district and by city or town. Rural areas were over-sampled, which elicited robust information about rural issues with MCH/CSHCN. Figure 3. Key Informant Interviews Conducted by Health District Health District of Interview (N=53) 0 5 10 15 Southeast 20 15 Salt Lake 12 SanJuan 8 Tricounty 5 Weber-Morgan 5 Southwest 4 Tooele 3 Wasatch 1 Figure 4. Key Informant Interviews Conducted by City or Town City/Town of Interview (N=53) 0 2 4 6 8 10 Salt Lake 12 14 12 Price 9 Moab 6 Blanding 5 Ogden 5 Vernal 5 Tooele 3 Bluff 2 St. George 2 Cedar City 1 Heber 1 Monument Valley 1 Panguich 1 17 Focus Group Discussion Participation A total of six focus group discussion were held with parents, adolescents, and included Spanish speaking mothers on one rural area (Moab). Table 7. Focus Group Discussions by Type, 2019-2020 1 Mother's Group (Spanish Speaking) Moab 2 Adolescent Girls Salt Lake City 3 Adolescent Boys Salt Lake City 4 CSHCN Parents Salt Lake City 5 Home Visiting 1 Salt Lake City 6 Home Visiting 2 Ogden (Virtual) 12 13 8 6 5 4 48 4.6 PRAMS – Five year review of qualitative responses The PRAMS survey is conducted routinely and includes a population-based sample of women with a recent live birth. The survey includes an option for participants to provide comments. Participants made 1578 substantive comments in the surveys from 2013-2017. Twenty two percent of all participants in this time period provided a substantive open-ended response. These comments were analyzed to assess common themes. Major themes that emerged focused on 1) pregnancy complications and delivery, 2) experience with services, and 3) issues with their infants. Comments about pregnancy care and delivery were broad, but ultimately focused on unanticipated caesarian section, gestational diabetes, preecplampsia, preterm labor, and incompetent cervix. Experiences with services shared positive and negative experiences and clearly supported a call for more education on breastfeeding and safe sleeping strategies. Mothers also focused on their babies, describing issues of low birthweight (and gain), as well as experiences in the neonatal intensive care unit (NICU). Characteristics of all women who participated in the Utah PRAMS Questionnaires from 2013 to 2017, are listed in Table 8. There were no significant differences between participants who commented from the overall distribution of participants. 18 Table 8. Characteristics of Utah PRAMS Participants and Commenters, 2013-2017 Participants Commenters n % n % Age 7048 100 1572* 100 17 years or younger 124 1.8 24 1.5 18-19 295 4.2 54 3.4 20-24 1613 22.9 342 21.7 25-29 2234 31.7 493 31.4 30-34 1781 25.3 413 26.3 35-39 837 11.8 201 12.8 40+ 164 2.3 45 2.9 6710 1287 2005 1729 1689 100 19.1 29.9 25.8 25.2 1483 307 375 370 431 100 20.7 25.3 24.9 29.1 Married Not Married 7037 5427 1610 100 77.1 22.9 1572 1246 326 100 79.3 20.7 Hispanic Not Hispanic Unknown 7048 1475 5333 240 100 20.9 75.7 3.4 1572 362 1154 56 100 23.0 73.4 3.6 Postpartum Depression Status Depressive Symptoms No Depressive Symptoms 7048 1054 5994 100 15.0 85.0 1572 296 1276 100 18.8 81.2 Pregnancy Intention 6873 4226 1665 982 100 61.5 24.2 14.3 1525 953 380 192 100 62.5 24.9 12.6 Insurance Status Before Pregnancy 6962 100 1557 Private/Group Insurance 4527 65.0 990 Other Insurance 259 3.7 69 Medicaid 770 11.1 168 No Insurance 1406 20.2 330 * Six commenters did not have ID numbers to link to descriptive characteristics 100 63.6 4.4 10.8 21.2 Education Level Less than High School High School Some College Bachelor’s Degree or Higher Marital Status Ethnicity Intended Unintended Ambivalent 19 Participation in Tribal Consultation The Utah Indian Health Advisory Board discussed the MCH Needs Assessment with Evaluators and UDOH representatives at three of their meetings on August 16, 2019 in Blanding, Utah, October 11, 2019 in Salt Lake City, and January 10th, 2020 in Salt Lake City. Approximately 15 Board members, staff, and/or interns participated in the discussions. Ten organizations were represented and are listed in Table 9. Table 9. Organizations Represented in Utah Indian Health Advisory Board Discussions Organization Type Organization Name Indian Health Services Albuquerque Area Office Navajo Area Office Phoenix Area Office Tribes Confederated Tribes of the Goshute Reservation Navajo Nation Department of Health Northwestern Band of Shoshone Nation Paiute Indian Tribe of Utah Utah Navajo Health Systems, Inc. Ute Mountain Ute Tribe Urban Indian Urban Indian Center of Salt Lake Regional and Statewide Stakeholder Meeting Participation Approximately 173 stakeholders attended regional meetings and the statewide summit. Table 10 provides details of the events. Table 10. Stakeholder Meeting Attendance Location Date Ogden / Northern Region 10/18/2019 Moab /Southeast Region 11/7/2019 Cedar City / Southwest Region 10/24/2019 Virtual 11/15/2019 Salt Lake / Central Region 12/6/2019 Statewide Summit / Salt Lake 2/28/2020 In-person 8 3 8 5 18 63 Remote 1 3 3 22 15 24 Total 9 6 11 27 33 87 173 20 4.2 Overarching Themes Several common themes emerged and were often corroborated by more than one data collection method. Themes were identified that apply across domains and describe needs and challenges, as well as strengths and opportunities. Survey data informed the ranking of priorities by domain area and qualitative data provides contextual information and further explains themes and priorities. Themes were organized into five main priority areas, 1) mental health, 2) affordability of health services, 3) access to health services, 4) public health funding, and 5) systems strengthening through systems thinking. Table 11 summarizes key issues by over-arching and individual domains. Table 11. Summary of Main Themes by Cross-cutting and Domain-Specific Issues Major Theme Cross cutting needs/issues Domain-specific needs/issues 1. Mental health Need to expand mental health and substance use services Perinatal depression Increase awareness of ACEs and need for parent and provider education Substance use and pregnant women (Opioids/Meth) Youth Suicide / LGBTQ Need more school counselors 2. Affordability of health services 3. Access to health services Medicaid, CHIP, and other insurance options for women and families could be more visible and widely promoted Difficulty qualifying for insurance for CSHCN / long wait for disability benefits Strong support among stakeholders for ‘universal’ type of insurance coverage Mental and dental services not often covered Statewide visibility of important services, such as Medicaid, CHIP, WIC, Home Visiting, CSHCN and many other MCH services Need more OB/GYNs, Pediatricians, Psychologists, and counselors in rural areas Investments into more care coordination, especially with statewide CSHCN, can help link people to needed care Policy changes are needed, paired with outreach to vulnerable populations to alleviate fears of immigration problems Services be culturally and linguistically appropriate to be accessible to all underrepresented minorities and families who may have mixed immigration status and attention given to promote diversity and inclusion Long wait times for providers More telehealth services needed in rural areas, especially for CSHCN, ABS treatment, and others Need more visits of specialists to rural areas for CSHCN Need more school nurses so school nurses can be first line of defense for youth. Nurse to student ratio is extremely low Low WIC enrollments may be due in part to fear of immigration or distrust of government 21 Table 11. (Continued) Summary of Main Themes by Cross-cutting and Domain-Specific Issues Major Theme Cross cutting needs/issues Domain-specific needs/issues 4. Public health funding and assessment More evaluation of program effectiveness and return on investment is needed to better justify and access funding More investments are needed in school health, WIC, and Home Visiting Public health is invisible – it needs more support, advocacy – potentially through partnerships 5. Systems strengthening and Quality Improvement Health departments are expert networkers and collaborators, however, there are additional opportunities to collaborate with healthcare and social service providers and other leaders to improve the design of MCH and CSHCN services and health outcomes Workforce development – Public health professionals need continued support to perform well. They are dedicated and hardworking and compassionate, many wear multiple hats, and “do more with less” Actively promote health equity and address social determinants of health through strategic partnerships and investing in evidence-based programs. Consider recruitment strategies to increase diversity of staff who serve the community Need more “situational awareness” to better support/fund equitable sexual health services statewide Public Health funding distributions should consider tribal entities for MCH and CSHCN funding, along with local jurisdictions Assurance of adequate amounts of and access to reproductive and sexual health services should be championed by public health officials There is a significant gap of quality and affordable childcare and preschool, especially in rural Utah A clear and intentional approach for youth sexual health education is needed to assure the equitable availability to youth state-wide Programs cited that improve health equity and help address social determinants of health were WIC, Medicaid and expansion, Home Visiting, SNAP, and community health workers. More effort could be made to offer health information in different languages 1. Mental Health “I would like to have doctors more open about being depressed or having anxiety issues. It's hard as a woman/person to breakdown and admit they are having these feelings or issues. I felt dumb and that my feelings and thoughts were brushed off. […] I think more women suffer with this and are afraid to say something and when you build up the nerve to finally say something and not feel heard it was hard." 22 Mental health concerns were expressed across the board and within each domain. It ranked among the top five priorities in all domains with the exception of infant health. It was described as an important issue by stakeholders, providers, mothers, parents of CSHCN, youth, and parents. In the CSHCN area, there have been significant changes to the Bureau and a loss of 1.5 million dollars in state and federal funding. Parents of CSHCN describe wishing they could have services “like they used to be… a one stop shop, it’s sad to walk in the building where there used to be busy clinics.” A history of the changes (Figure 5) to the CSHCN Bureau over the past several years is important to note in this assessment, as the changes were very significant. Specific examples include: • Lack of providers - The need for mental health and substance use services far outweigh what the current system can accommodate. Only the most acute cases seem to be able to access mental health services, and preventive services are almost nonexistent. Due to a lack of mental health providers, more providers in other health professions need training about mental health, including ACEs, how to refer, how to prescribe. Specialists are particularly scarce. • Increasing substance use – Parts of Utah have been hit hard by the opioid epidemic while use of methamphetamine continues. This is particularly difficult in some rural areas where need outweighs available service and stigma is more prevalent. • Perinatal Depression – Participants wanted to see more awareness and support for perinatal depression, including better screening by providers and more education for women. • Trauma/ACES – Participants wanted to see more awareness and prevention of adverse childhood events that can lead to poor mental health throughout life. This could include focusing on parenting skills and support, increasing school counselors, and relates closely to the issue of how to pay for mental health services when insurance coverage is low or providers do not accept Medicaid or CHIP. • LGBTQ – Participants recommend special focus on mental health for the LGBTQ community, especially youth and school-based initiatives to combat bullying, promote inclusion, and reduce stigma. 2. Affordability of Health Services “The other vulnerable [group] is probably the working mothers that don't make enough. They make too much to be on Medicaid, but they don't make enough to pay their bills and take care of a baby. And a lot come in without blankets and just the basic needs.” Access to affordable and adequate health insurance also ranked within the top five priorities across the domain areas and was frequently discussed as a need by participants in interviews and focus groups, with the exception of youth. Participants frequently suggested more equitable forms of health insurance and lamented the variability. • Universal coverage – There was strong support for the idea of universal health insurance and activities such as Medicaid expansion, and extending enrollment periods. This highly 23 unified desire was often coupled with comments of doubt, that this would never happen, especially in Utah. Even with the current system, Utah could choose to expand types of services covered by Medicaid that would improve access to mental health and dental services, which are critical for pregnant women. 3. Access to Health Services and Utilization Access to health services often relate to insurance status, but also to the actual existence and availability of providers, especially OB/GYNs, mental health providers, pediatricians, and specialists for CSHCN. Access to health support services such as Medicaid, WIC, Home Visiting, and school nursing, and school counselors is limited and harder to reach for some populations. • More providers needed - Need more providers in specialty areas such as OB/GYNs, psychologists and counselors overall, but also with specialty training (i.e., child/adolescent, learning disabilities, autism spectrum), and providers with multicultural backgrounds. • More school-based services needed such as school nurses and counselors to help identify health needs and link youth to needed care. • Program Visibility – There is a lack of awareness of available programs which support MCH and CSHCN. There was a request for a more concerted effort to educate and inform the public about these services. Health departments did not tend to have budgets or strategic approaches to increasing visibility of their program. • Distrust of Government – There is some evidence that people in need of services are forgoing services either due to cultural values of “self-reliance”, or due to fear of immigration problems. Immigrants, especially Spanish speaking participants, are weary of using any service for fear of immigration problems or putting other family members at risk of deportation. Utah has a strong cultural norm about self-reliance and negative judgements about using government services. Furthermore, youth worry about confidentiality if they try to access reproductive health services, sexual health literacy, and pregnancy prevention services, such as birth control. “I feel like there are a lot of people who aren’t willing to accept our services, like with WIC. They want to do it on their own. They don’t want to take government help.” • • Referrals and Case Management - Among the many programs, referrals could be better between all the programs, such as referrals between WIC and home visiting. However, the vast majority of respondents described care coordination as a major strength and shared many examples of success in this area. Home Visiting was commonly described as an example of a program that includes a great deal of care coordination. Access to culturally and linguistically appropriate care was also cited. This issue was noted for the Hispanic population, the Native American population, and the LGBTQ community. Issues included insufficient numbers of providers who spoke Spanish, utilization of language that was not respectful of non-gender conforming individuals, and familiarity with traditional values and customs, particularly around the birth experience. “But understanding that indigenous people have indigenous ways of dealing with birth and whether they choose to have a baby in a hogan or they choose to have it in a hospital, I feel like the family needs to be respected in both environments. I participated recently in a birth at the 24 hospital, and it’s a traditional practice to take the placenta and the afterbirth and deal with it appropriately, traditionally. And the nursing staff at the hospital were not respectful of that custom.” 4. Public Health Funding The need for more investment in public health was a frequent topic, as well as a need to stabilize funding streams. In some cases, funding levels were described as sometimes adequate, often unreliable, where they may be available for 2-3 years and used to implement or expand a program, then suddenly significantly reduced or cut. This was perceived by stakeholders as possibly worse than having had no funding at all. Funding was described as an underlying problem for many programs and services, but particularly with CSHCN, Home Visiting and school nursing. For example, the CSHCN budget has declined by over $1.5 million since 2014 and resulting in the closure of several clinical care programs. Outcome evaluation assessments were also described as an activity that has been rarely funded, but essential for determining program effectiveness and providing justification for continued funding or expanded funding. Without such documentation, there lacks evidence that such programs have provided benefit for target populations. Local health departments described some reliance on state dollars, but they also find local funds to support their work. • • • Lack of Funding – Many public health programs are funded “on a shoestring” and funding formulas for local health departments may need adjustment to cover administrative burdens despite population size. Tribal health representatives recommended more consideration in including tribal health entities in funding allocations. Unreliable Funding – Funding opportunities come along to start new programs, but then may be discontinued suddenly. This is not only disappointing, but leads to distrust by clients and the time invested by the effort is a loss to taxpayers. Assessment – Health Departments are a natural lead for assessment of community health needs. Ongoing assessment may lead to increased and stabilized funding sources. While local health departments may no longer provide direct clinical services, they should maintain a lead role in the assessment of what services are available in their jurisdiction as it relates to maternal, child, CSHCN, and adolescent health. Particularly in priority areas of mental health, reproductive health, and health education. Key informants made the following observations about funding: "Well, I think funding is a huge issue. I think we could do a lot more if we had more funding for maternal child health programs. It's just always a hard sell; … Because people want immediate results.” 25 "… I don’t know why they keep cutting [MCH/CSHCN] if there’s money there. Is it because people aren’t going to the legislature? “We realize that funding is probably not going to increase dramatically. We’ve got to work smarter, and we’ve got to work together to get the results we want." "You know that everyone’s going to hear the cry for more money. And not just more money. It needs to be the right kind of money. And again, I’ll give you an example. Like Medicaid expansion, that’s great. For some people, that’s going to be perfect. All they need is a therapy session here or there, see a prescriber, get some medication. It will work wonderfully for them. It’s not going to work so wonderful for some of those individuals that are high utilizers." 5. Systems Strengthening and Quality Improvement "Ideally…before a woman even gets pregnant, she would have proper education. These would be planned pregnancies, drug-free – I’m really shooting for the stars. She would have housing. She would have a job, maybe, or at least some source of income. She would receive all the prenatal healthcare that she would need to have a healthy baby. No babies would be addicted to drugs. Wouldn’t that be heaven? "I think the programs that are just starting are important, like the Intergenerational Poverty initiative. If funding weren’t an issue, of course, everybody would have a medical home and they wouldn’t have to worry about who’s going to pay and they could all live in better housing” "Full-service schools [are needed] so the parent, the mother, father, or whoever is the primary caregiver, makes sure that the child is protected, and they can go get healthcare and mental health stability, and attend to their needs. Then they can come back and be the great caretaker for that child." Participants often discussed underlying forces that influence maternal and child health that must be incorporated into design of a system to support maternal and child health. They describe principles of equity, inclusion, cultural competence, and the appreciation of the interconnectedness of health and social care. Participants highlighted the needs to take the following factors into consideration to plan for a better system: • Social Determinants of Health – Recognize the interconnectedness of health with other issues, such as poverty, childcare, affordable housing, transportation, rurality, food security, education, incarceration, and other factors as they apply to MCH/CSHCN. • Quality and Performance – Many opportunities were identified to improve quality, whether it is in improving cumbersome enrollment processes, or easing administrative burdens. Efficiency by providers was notable, with many examples of doing less with more, carrying 26 high patient or student loads, and networking with partners to help people navigate care. Quality improvement efforts could focus on these interrelated systems to improve efficiency, quality, and to make evidence-based decisions about resource allocation. • Culturally appropriate care – Participants often described that staff are well-trained and compassionate. Additional training could be used to increase their ability to adapt programs to provide culturally appropriate care. More training and strategic recruitment may be useful to continue to improve inclusive and culturally appropriate service provision. "I actually think that the state is doing a good job of working and trying to enhance [MCH/CSHCN] capabilities, and it’s not everybody else's job. We're looking at what we can do to centralize our data, so that we can look at strategic initiatives." "Most of our staff are white, and that’s something that we think about a lot. But it’s a difficult thing to practically grapple with, not just theoretically...." “They [a polygamous community] had a pertussis outbreak with their children. Our director and one of the doctors went out there, did a presentation on pertussis and immunizations. That was a huge breakthrough for the moms and kids out there. They said that they really felt like we cared about them.” • Advocacy and Partnerships – Advocacy and partnerships could be used more often by public health to disseminate information to policy makers about MCH/CSHCN needs and evidence-based successes. • Home Visiting – MIECHV Home Visiting services were often described as an important evidence-based program that by design, addresses the multitude of social determinants of health and other non-health factors that must be addressed to improve MCH. Parenting skills and supports for parents to succeed are critically important. Home Visiting services are an asset for maternal and child health and the MIECHV program is an important complement to MCH Title V activities in Utah. 27 4.3 Women Stakeholder Survey A total of 1,025 people answered questions about maternal health in the online survey. Detailed results are found in Attachment C. The vast majority, were women (88.5%), 87.0% were white, 9.2% Hispanic or Latino, and 2.0% Asian American or Asian. Less than one percent of participants were Black or African American, or American Indian, Native American, or Alaskan Native respectively. Participants were likely to be older than 25. Ranking by age group did not differ among ages 25+, but those younger than 25 were more likely to be concerned about alcohol use during pregnancy, 25 – 34 also ranked male/father involvement, and folic acid use to prevent birth defects. The majority of participants reported their primary role as a clinician or public health professional 64.4% (n = 421), while 35.6% (n = 233) identified as a parent or community member. Priority rankings were similar in these groups with the exception of unplanned/unintended pregnancies and not getting immunizations. Unplanned/unintended pregnancies did not make the community/parent top 10, while immunizations did not make the health professional top 10 list. The majority of respondents, 82.8% (n = 539) were urban dwellers, compared to 17.2% (n = 112) rural dwellers. Priorities were very similar with the exception of unplanned/unintended pregnancies and male/father involvement, which ranked 8 and 9 respectively among rural dwellers, but did not make the urban list. Conversely, issues that made the urban, but not rural list included environmental exposures like air pollution and not getting immunizations. Overall rankings are listed in Table 12. Table 12: Top 10 Ranked Maternal Health Issues from Stakeholder Survey, Utah, 2019 Source, Utah Department of Health, Online Survey, 2019 28 Perspectives from PRAMS survey participants Women in the PRAMS survey provided perspectives in three thematic areas: Pregnancy and delivery, Experience with Services, and Maternal Mental Health. Many of the comments echo stakeholder themes and suggest a strong desire for more health information, classes, and good communication with providers. Women’s pregnancy complications and delivery: In the PRAMS comment data, many women were eager to share their experiences with pregnancy care and delivery. The experiences shared in response to the questionnaire are broad. Many women shared their experiences with complications related to their pregnancy and delivery, such as preeclampsia and gestational diabetes. One woman describes her experience with preeclampsia, "I had no idea I had preeclampsia. I did not have high blood pressure problems, but I did have swelling early in pregnancy. … it would be nice to be more informed of signs and symptoms during pregnancy. If I had seen swelling early, I would have checked it out. Doctors [should] tell us more about preeclampsia and gestational diabetes. I had no idea what to look for or early signs." Other complications discussed were placenta previa, preterm labor, incompetent cervix, and unanticipated cesarean deliveries. Through all of the comments, it was evident that each pregnancy and delivery are unique. Many responses described how pregnancies and deliveries of each of their children differed, whether it be complications, getting older, or changes in care. One woman stated, "This is my fourth pregnancy. Every single pregnancy has been different in every way. Two in my twenties and two in my thirties. My second and fourth children were both premature in the three-pound range." Experiences with pregnancy care and delivery A variety of experiences were shared regarding pregnancy care. Many focused on experiences with care received during pregnancy including praising their care and caregivers, requesting expansion of services, suggesting areas for improvement, and expressions of disappointment with prenatal or postpartum care. One woman explained, "I felt like my OB doctor was very aware of me and my needs and that was really comforting to me because I had multiples because, I felt like his knowledge and the way he treated my situation, my babies were healthier than they would have otherwise been." Other women expressed their desire for more classes and education opportunities during pregnancy and postpartum, "I wish there would've been more resources and support given for breastfeeding during pregnancy. It was much harder than I thought." There were comments throughout that mentioned that they had received some services, but would have benefitted from longer-term help, especially regarding breastfeeding. Another mother expressed her gratitude for programs she was able to use up to birth, but acknowledged, "I was able to afford to do those things… someone with a lower income may struggle." Another woman explained, "…financially, I didn't qualify for WIC. It would be nice to have […] the information that WIC would have provided, especially for first-time mothers." Women expressed a need for more widespread availability of services, whether it be WIC, mental health, breastfeeding, or improved provider interactions. 29 Maternal Mental Health Women who commented in the PRAMS survey frequently talked about pregnancy, postpartum experiences, and what kinds of education they need from providers. Many discussed their mental health during pregnancy, one woman talked about how her health during pregnancy impacted her mental health, “I had extreme morning sickness - this triggers depression for me.” Another acknowledged, “I've had depression and anxiety for 15 years. Pregnancy did not make this worse.” A common theme was the need for increased access to mental health professionals, “…in hospitals there should be psychologists or counselors who give talks or talk with the women who have given birth to help them or give them advice for when they feel depressed, sad or alone” and “I wish there was more counseling services, in more places, and that we could go. That could help young mothers to get help and make decisions about their care…” One woman shared her postpartum experience after having many miscarriages, “I had six miscarriages to get this baby, rather than enjoying my new miracle, I'm distracted and in shock. I wish there was more prevention or detection [of post partum depression] from my doctor.” It is important for maternal health providers to be well versed in how to address mental health concerns in both pregnant and postpartum mothers. Addressing what concerns they can and referring to mental health professionals as needed. Key Informant Interviews and Focus Groups Women’s (mothers’) issues were addressed by numerous respondents including both key informants and the focus groups.. The three broad themes of Access, Funding, and Utilization emerged. Within these were both positive comments around successes and promising practices as well as comments around challenges and gaps in care. Several services were noted, primarily the Women, Infants, and Children (WIC) program and mental health services, particularly in the peripartum periods. Family planning and pregnancy care was discussed primarily in relation to the theme of access and availability of providers. Funding to support Women’s health programs was a commonly noted barrier, while staff who work in these programs were lauded for their dedication and ability to do more with less. While staff are extremely dedicated and resourceful, there appears to be a limit to the success than the dedication can generate. Women’s health across the lifespan One issue that was brought up, was that women’s health across the lifespan has been ignored and programs mostly focus on pregnant women. One respondent said, “Well women care is not a part of the culture. If I had a magic wand I’d get comprehensive care throughout all women’s lives. I’d start educating them early on how to take care of themselves so that it would be a priority throughout her life.” Access The broad theme of access was raised by the participants in a number of ways in relation to women’s health. Access to affordable health insurance was a consistent issue raised by participants. The most in need were described as working poor or middle class. Even in the middle class, one participant was able to afford insurance for her child, but had to forgo insurance for her and her spouse. 30 Access to mental health services is limited, particularly in the rural areas. There is some availability via Telehealth, but access to that is limited by Medicaid coverage for mental health services. In that community, mental health care is a capitated service with a single provider. Wait times for an appointment can be three months or longer with that provider. “…counseling care in our center is capitated with Medicaid. Anyone on Medicaid has to go to them, and the wait is very long.” We have tried to help so many moms [with counseling]. They are struggling, but they have Medicaid, so we can’t connect them with providers that are actually trained in postpartum, or perinatal disorders. The waitlists at the counseling center are long – we have a mom answering with suicidal thoughts, and they’re six weeks out… It’s really frustrating.” Access to Family Planning and Pregnancy Care also emerged as significant issues. There is variability in the availability of family planning services across the jurisdictions. In some areas, family planning was readily available, whereas in other areas, public health and even health care providers were not as aware of what services were available, and not providing family planning services. Access to care, particularly specialty care, is problematic outside of the Wasatch Front. In one of the rural counties, there was concern about the lack of obstetrical care for any high-risk pregnancies. All deliveries in the area were done by family physicians, hence for any pre-identified high-risk pregnancies, the women would travel to Salt Lake a week or so before her due date for delivery. The reliance upon family physicians for all OB/GYN care was highlighted not only as an issue for high risk pregnancies, but also from a cultural standpoint. Latina women reported being more comfortable seeing female provides and less comfortable with male providers. Issues surrounding access to care are not limited to the rural and frontier counties of the state. Even within the Wasatch Front, one interviewee talked about a program that was deemed useful for a client that lived in Farmington, but the only location available was in Daybreak (37 miles away). Generally, WIC was considered a successful service, yet there were access issues associated with that program as well. Access to WIC services seemed to be limited by a couple of different factors. The hours for the WIC clinic, particularly in the rural areas was not conducive to working mothers. Access was also limited by the distances that families needed to travel to the clinic for their educational programs and to get their vouchers. WIC In many of the jurisdictions where interviews were conducted, WIC was highlighted as a key to their success. The success was attributed to various factors including the educational guidance and counseling done in the WIC program, as well as the relationships and connections made by the WIC staff with clients that often translated to other health department programs. One informant stated that “…we make good connections with those clients, and I feel like we’ve built good relationships to where they feel like they can call us and ask questions or get follow-up.” The coordination of care provided, particularly through the health department is also seen as a strength. One informant said that “…when people come in, we try to give them an umbrella of services.” One reason given for the successes was that the staff are very dedicated to serving their clients. This was echoed in many of the locations. 31 One issue that was raised in practically every venue was the declining enrollments in WIC services. Different ideas about why enrollment was declining were given by different jurisdictions, but the significant decline was mentioned by everyone. Some thought it was due to a shift to Supplemental Nutrition Assistance Program (SNAP) because it is easier to get and to use. Others thought that the issue surrounding immigration and the changes in interpretation of the “public charge” were scaring immigrants away. Others felt that the improving economy might be part of the decline. In spite of this, there is a sentiment about how valuable WIC actually is. Mental Health and Substance Abuse Perinatal depression was a commonly cited concern, and participants wished there were more resources to screen and support women, and to increase awareness of symptoms and recognition that it exists. Successes have been noted when women’s health services are co-located near mental health services, and this was true in both urban and rural settings. Healthcare providers and WIC employees noted how they can more easily get their clients to counseling in these situations. However, sometimes there are long waiting lists or providers may not take their insurance. In rural areas, it was noted that counseling via telehealth can be a significant help, especially in crisis situations. For instance, a woman can come to a WIC clinic and be set up in for a remote counseling session. Multiple rural public health professionals noted the importance of telehealth and wished that more providers from Salt Lake would participate. Maternal mental health was frequently discussed by key informants using descriptors such as “maternal mental health”, “women with mood disorders”, “mothers struggling”, “baby blues”, “mothers emotional after having child”, and “mothers’ mental health”. There were several notable themes, including the barriers and strengths of mental health services and community assets that are available and accessible. Other common terms and related issues included postpartum/perinatal depression, substance use, suicide, and Adverse Childhood Events (ACEs). Comments on access to mental health services noted barriers such as stigma and lack of trust in providers. New mothers are a vulnerable population that face many challenges, especially women in rural areas. One of these challenges is the pressure to be a perfect mother, wife, partner, etc, that can cause a great deal of stress. This pressure can deter help-seeking behaviors, even if they have access to services. As one informant stated: “So, I think the big things we see are access to mental health care... We have a hard time getting people into services. It's difficult, transportation is always an issue for clients, so going somewhere and getting somewhere. And then they are low income, so often they can't take off from their jobs or do those types of things to get into services. So, I think that's a big thing.” (Urban Health Department Employee) Another interviewee stated, “So there's gaps; there’s also that stigma of getting help or thinking that they’re gonna take your baby away if you do have depression or any kind of crazy thoughts. And there's just not enough mental health providers per – the ratio is huge.” (Rural Health Department employee). This encompasses the stigma around utilizing mental health services. Another theme is overall access to maternal mental health services. Accessibility can vary, due to the changing availability of services, the ability of the patient to travel to the specific clinics where services are offered, insurance coverage of services, and the hours they are offered. Within this theme, the most frequently mentioned issues are the availability of services, and individuals’ insurance coverage. One interviewee stated, “ Maternal mental health, we have (a behavioral health clinic), but I've heard you have to have Medicaid or you can't go anywhere else if you have Medicaid. So, those are some of the 32 gaps.” (Rural health department employee). This reinforces that in rural areas of Utah, issues with insurance are barriers for accessing mental health services. Another informant stated: “We can do basic care. We can get them started with antidepressants or some of that. I think counseling services. Mental health services in our country are pretty sparse. (Our behavioral health) clinic has one counselor, but that's pretty much it. We do have a woman from Cedar that comes and can do counseling with patients as needed, but often patients have to travel to get mental health care.” (Rural healthcare provider) Another interviewee said, “But there were money restrictions that prevented us from accessing some telemental health services that we felt like maybe were available because then the person’s Medicaid wouldn’t cover it, or something to that effect.” (Rural health department employee). This also shows that insurance coverage is a barrier to patients receiving care. Postpartum / perinatal depression was one of the most frequently mentioned topics within maternal mental health. One interviewee stated, “Also, postpartum depression, prenatal depression really affects our families as well, and they struggle to access available resources because – oh, what’s a good way to put – It actually increases the depression” (Urban, Community organization member). Another interviewee said: “Mostly we see, because we deal with postpartum populations, maternal mood disorders. …A lot of anxiety and postpartum depression. We have people that [provide] home visitation, such as Parents as Teachers. They see people that have real mental health issues” (Urban, Health Department employee). Substance use disorders - The most noted substances abused among women were opioids and methamphetamine. Some areas of the state have been hit hard with the epidemic, especially in Carbon County. Multiple participants discussed the importance of keeping mother and baby together, when possible, while getting treatment for mom. It was explained that the trauma of separation exacerbates the problem, and can be very traumatic for other siblings and mom. Substance use was a topic also discussed within maternal mental health, as it is often a coping mechanism for dealing with mental health issues. As one interviewee says: “So, what it entails is we will identify pregnant women with substance use disorders who then they come and meet with me, and we come up with their plan of who do we need to connect you with?, how we can support you?, what we can do?, … and then we get them on Suboxone or methadone. Then, they're enrolled in counseling and support that (our local clinic) offers” (Rural, Healthcare Clinic, Healthcare Provider). This quote details how often substance use is a concern in rural areas, and providers can do for those with substance use disorders. Another informant stated: “Then, addiction medicine. We treat addictions. We help people get off drugs and get them therapy in that sense. Depression, anxiety, all of the mental health things. So, we have a partnership. So again because I have the freedom to have these partnerships, we've partnered with (our) behavioral health (clinic).” (Rural clinic, healthcare provider). Substance use is a frequently discussed topic, and because it is closely related to mental health concerns, it should be addressed on multiple levels. 33 4.4 Infants Stakeholder Survey A total of 638 people answered questions about infant health in the online survey. Detailed results are found in Attachment D. The vast majority, were women (85.9%), 87.1% were white, 9.7% Hispanic or Latino, and 1.6% Asian American or Asian, American Indian, Native American, or Alaskan Native, and 0.6% were Black or African American. The sample suggests that non-white participants were underrepresented when compared to the overall population. Rankings did not vary much by age group. The majority of participants reported their primary role as a clinician or public health professional, 66% (n = 337), while 34% (n = 174) identified as a parent or community member. Priority rankings were similar in these groups with the exception of neonatal abstinence/withdrawal made the list for health professionals, but not community member/parents. The majority of respondents, 84.6% (n = 429), were urban dwellers compared to 15.4% (n = 78) rural dwellers. Priorities were very similar with the exception of poor nutrition during infancy and low attendance at well-baby visits among rural respondents, which ranked 6 and 8 respectively. Overall rankings are listed in Table 13. Table 13: Top 10 Ranked Infant Health Issues from Stakeholder Survey, Utah, 2019 Source, Utah Department of Health, Online Survey, 2019 34 Perspectives from PRAMS survey participants Women in the PRAMS survey provided perspectives on their infants. Many of the comments were informational about the infant, how they are growing, and concerns about sleep safety. Among women who needed NICU services, they provide suggestions for more social work support and provided compliments to NICU staff. Infant health and development - Participants that described their infants tended to discuss issues about height and weight, experiences in the neonatal intensive care unit (NICU), sleeping habits and arrangements, and health concerns for the infant at birth or at the time of the PRAMS survey. Many described the weight and height of their baby at birth, and provided updates on their current weights for those who were small for gestational age. One woman shared, "The last month of my pregnancy, my baby stopped growing because my placenta was not giving her enough nutrients that she needed. I was 39 weeks and induced, she measured as if she was 32 weeks. She was tiny, but now she is 21 in. or more, healthy, and getting chubby." Safe sleep - Sleep was another concern that mothers shared, whether it be co-sleeping, lack of sleeping during the day or night, or sleeping positions. One woman explained, "I know very well my baby should sleep in her own bed without blankets & pillows & animals, but she refuses to sleep by herself since day one. I do not want to let her cry it out because I feel she is way too young for that. […] I wish I knew a way to get her to sleep by herself." Like this response, many expressed a desire for resources or education in caring for their infants, especially in the areas of sleep and breastfeeding. NICU care - Approximately 7% of the 1578 comments describe experiences in the NICU. Some of their infants' stays were short, and others were much longer. Several responses expressed the need for resources specific to NICU parents. One woman expressed, "I was surprised by the lack of hospital support, emotionally, for these situations. I think it would be extremely helpful for a social worker to come in to talk with moms who have babies in the NICU or have abnormal deliveries." Another woman shared, "I was really impressed with my NICU experience. It was really a surprise to me how good my experience was. It made it easier for me." Key Informant Interviews Services The most commonly cited services for infants included WIC, immunizations, prenatal to five or “P-5”, Be Wise, Baby your Baby, and early intervention. Be Wise is provides cardiovascular health screening and health coaching to eligible Utah women. Baby your baby is provides temporary medical coverage for pregnant women who are determined presumptively eligible WIC was most commonly noted. Home visiting was recognized as a very valuable program for both mom and baby and as the most comprehensive. However, some home visiting services are brief, such as targeted case management (TCM) with just a few visits, while some areas offer home visiting from pregnancy through age three. Specific services, such as breast feeding counseling for mom, were discussed occasionally in interviews, but did rank high as a priority in the online survey. A common sentiment shared by many respondents was the value of these services, as noted by below by one local health department leader: 35 “…we’ve had some programs like Be Wise and Baby Your Baby programs. …. what I do know is they have been in our [District] and they’ve been valuable resources.” Care Coordination Many of these programs work together to coordinate care and link parents to services. When describing declining WIC enrollment, a local health department representative described how the various programs work together to get people the care they need. “Their numbers were going down and so we are helping them with recruitment. Like if we have a Baby Your Baby person who helps them. A lot of it is online, but they’re also referred to WIC. If they qualify for Baby Your Baby, they most likely qualify for WIC. So, we have this partnership with them that we will send our Baby Your Baby people over to them the day that they are here.” Substance Use/Addiction Substance use during pregnancy, especially opioids and methamphetamines, is a silent epidemic around the state, and is both an urban and rural problem. In a rural hospital with about 25 births per month, the number of babies born with symptoms of addition has increased dramatically. A healthcare provider in a rural hospital noted that “Ten years ago, I would've said maybe three (deliveries with symptomatic infants) a year. Sometimes it's three a week now. And yeah, we're trying to figure out what's going on with this baby and then we realize mom's using. So, it's – the prevalence has really increased.” Abuse/Adverse Childhood Experiences (ACEs) Adverse childhood events (ACEs) such as abuse and neglect were described as a significant concern for infants. Infants were noted several times, as one of the most vulnerable populations since they are completely dependent. Much of the conversation about ACEs focused on the effectiveness of home visiting programs and how they can equip parents with needed skills to care for their children. It was also noted that home visiting programs are effective in identifying and preventing violence in the home. Childcare Access to childcare is a significant concern among participants, especially in rural areas where some counties have few daycare centers and few to no licensed in-home caregivers. Moms have expressed an interest in wanting to go to work, but face significant challenges finding and paying for childcare. A WIC employee said: “We have a lot of moms that are like, “We would love to go to work.” In one rural district, the only Head Start program was described as being in jeopardy of closing. The reason stated was that the eligibility requirements were so strict (low), that those who were eligible, were not likely to have a car or be able to afford transport to the program. In the mean-time, women on WIC were not qualifying, but many could get their kids to the program.” 36 This dilemma has left the Head Start program with low enrollment, despite high need. It was also reported that one WIC client in an urban area, safe childcare services are very expensive for infants. WIC clients frequently share their challenges with WIC staff which illustrate a high need for childcare and parenting skills. One WIC employee shared the following story about one WIC client: “We had one mom that told us that she would leave the six-yearold old home with a timer, and told her to feed the baby when the timer goes off because she had to go to work. Or they have very elderly, like the great-great-grandma tending all the kids while they go to work. It’s really bad.” ~Health Department Employee 37 4.5 Children Stakeholder Survey A total of 812 people answered questions about child health in the online survey. Detailed results are found in Attachment E. The vast majority, were women (85.1%), 85.0% were white, 13.1% Hispanic or Latino, and 1.6% Asian American or Asian, 0.6% American Indian, Native American, or Alaskan Native, and 0.4% were Black or African American. The sample suggests that non-white participants were underrepresented when compared to the overall population. Rankings did not vary much by age group. The majority of participants reported their primary role as a clinician or public health professional, 62.6% (n = 433), while 37.4% (n = 259) identified as a parent or community member. Priority rankings were similar in these groups with the exception of bullying and use of car seats and seatbelts. Notably, bullying ranked #1 among parents/community members, while ranking 8th among health professionals. Parents/community members noted use of car seats and seatbelts at #10, but did not make the list among health professionals. Among health professionals, air quality and overweight/obesity ranked in the top 10. The majority of respondents, 83.0% (n = 572), were urban dwellers, compared to 17.0% (n = 117) rural dwellers. Priorities were very similar with the exception of air quality, which ranked 8th in the urban list, but did not make the rural list, and after school supervision, which ranked 8th on the rural list, but did not make the urban list. Overall rankings are listed in Table 14. Table 14: Top 10 Ranked Child Health Issues from Stakeholder Survey, Utah, 2019 (Source, Utah Department of Health, Online Survey, 2019) 38 Key Informant Interviews Among the key informants, a number of topics were mentioned including ACEs, childcare, schools, and social issues such as isolation. Funding was specifically mentioned as something to consider, especially the ups and downs of funding. Schools as resources and partners Many of the informants talked about the role that schools play in child health. This includes providing free breakfast and lunch, education about health issues, and school nurses. In some of the counties, the health department provides school nurses. Those local health departments see that as a strength because they have in-roads into the school population. “[We] contract with the County School District to do school nursing, and of course, our school nurses do a lot. They interact with the youth, they do abstinence programs, and health screenings, and healthcare plans for those that require – I think more and more of that is including mental healthcare services and counseling.” In other jurisdictions, the school nurses are employed by the School District. Most felt that there were an insufficient number of school nurses to provide all that is needed by the children. Indeed, one respondent chose full-service schools as his/her ideal situation for child health stating, “Full-service schools so the parent, the mother, father, or primary caregiver for the child, makes sure that child is protected, and they can get healthcare and mental health stability and attend to their needs. Then they can come back and be the great caretaker for that child.“ Others felt that schools could be doing more to promote the health of their students, including improving the nutritional environment (e.g. less sugar and less milk for lactose intolerant kids) and increasing access to physical activity. There is also a sense that schools can play a critical role as a resource in providing or linking to children to mental health services and counseling of children, especially in terms of dealing with bullying and dating violence. In the interviews, different respondents in different communities talked about bullying, particularly in terms of LGBTQ youth. It is also an issue for minority populations who may not feel comfortable in a majority school, leading to high drop-out rates in middle school. Abuse/ACEs A number of respondents, both in rural and urban areas, reported ACEs as a major concern for children. This includes being the victim of abuse and seeing domestic abuse in their homes. Isolation was mentioned as possibly being a risk factor for abuse and other ACEs. Both in the rural and urban areas, social isolation is something that public health and their partners are attempting to solve, providing connections and solutions. “A lot of people now tend to be away from family, so a lot of the clients that we see are either estranged from their family or they don't have a lot of family supports around them. So, they tend to be a little bit more self-isolated. Isolation is a huge indicator for child abuse, so we do a lot to try to connect people or talk about connections and how that's protective. And we do group activities with the clients and stuff like that to try to get them to connect to other families.” 39 Childcare In one geographic area, all of the respondents mentioned that there was a complete lack of childcare. This was mentioned as being a factor in many aspects of child health, including being able to access childcare, isolation leading to abuse, being able to work to support the family, etc. Access to affordable and reliable childcare is essential to healthy children. Poverty Needs for children are wide-ranging and influenced by social determinants. The quote below is in response to the question “What concerns do you have about school aged kids?” The response indicates both a significant material need and demonstrates the dedication of public health workers to solve problems beyond their job description. “I was in the high school last year doing vision screenings and I noticed how many kids have really poor clothing and shoes, and it made me really sad because no kid should – I mean, one kid had literally duct taped his shoes together. Do you know what the stigma of that would be when you’re in the ninth grade, the awkward stage anyway? So I called a thrift store and I got some vouchers for that family. They were able to go get some clothing for their kids, so that was a success.” ~ Local Health Department Employee 40 4.6 Children with Special Healthcare Needs Parents of CSHCN had the opportunity to participate in two different surveys. The MCH/CSHCN survey focused on broad MCH/CSHCN domains and aimed to gather information about parent’s priorities. The CSHCN parent survey focused on issues specific to the CSHCN domain, such as medical home and transition to adulthood. MCH/CSHCN Stakeholder Survey A total of 423 people answered questions about health of children with special health needs in the online survey. Detailed results are found in Attachment F. The vast majority were women (81.9%), 89.9% were white, 7.2% were Hispanic or Latino, 1.3% were Asian American or Asian, only 0.3% American Indian, Native American, or Alaskan Native, and 3.6% were Black or African American. The sample suggests that non-white participants were underrepresented, with the exception of African Americans or Blacks, who were slightly overrepresented. Rankings did not vary much by age group with the exception of those under 25. In this group, oral/dental health ranked #1 and violence, abuse and neglect #2. Neither made the list among age groups 35 and over, while violence, abuse, and neglect did rank #6 among those age 42-34. The majority of participants reported their primary role as a clinician or public health professionals 71.5% (n= 279), while 28.5% (n=111) identified as a parent or community member. Priority rankings were similar in these groups with the exception of bullying, which ranked 5th among community member/parents, and did not rank among health professionals. The majority of respondents, 82.7% (n = 320), were urban dwellers, compared to 17.3% (n = 67) rural dwellers. Priorities were very similar with the exception of health insurance. While health insurance ranked high in most domains and across populations, health insurance did not rank in the top 10 among rural dwellers. Concerns by race and ethnicity were similar with the exception of bullying and housing, were reported as ranking in the top 10 by Hispanic category and oral/dental health and suicide were reported as ranking in the top 10 by non-Hispanic other category. It is notable that similar to child health, bullying also ranks high as a concern among Hispanic respondents. Overall rankings are listed in Table 15. Table 15: Top 10 Ranked Health Issues for Children with Special Healthcare Needs from Stakeholder Survey, Utah, 2019 Source, Utah Department of Health, Online Survey, 2019 41 Figure 5: History of the Restructuring of the Utah Bureau of Children with Special Healthcare Needs, 2015-2020 The CSHCN Bureau has had many administrative program changes from 2015-2020. The CSHCN Bureau had a robust clinical services program for over 70 years. The clinic was multidisciplinary, offering hearing, speech, nutrition, physical therapy, occupational therapy, developmental, genetic, cardiology, vision, social work and psychology among many other disciplines. In 2014-2015, the University of Utah proposed to the Department of Health they could provide more efficient, cost savings, advanced and expanded clinical services capacity than the Bureau had offered. Over the years on average the CSHCN Bureau served 2500 CSHCN per year. The University signed a year to year contract from 2015-2017 to offer statewide CSHCN clinical services. They hired their own providers and kept four CSHCN providers from the 48 clinicians who worked in the Bureau. The University focused on autism and developmental services and did not continue the vast service offering as the Bureau. Unfortunately, the University could not fulfill their agreement and terminated the commitment June 2017. When the CSHCN Bureau discontinued clinic services, the Bureau created the Integrated Services Program whose mission is to assist families of children and youth who have special health care needs with coordinated care planning, education and resources in order for them to make informed decisions. This may include primary and special health care, behavioral health, developmental and educational programs, financial support resources and social services that meet their special needs from infancy through the transition to adulthood. They coordinated with the University in hopes to smoothly transition clients, share ideas and support the change. After the first year of the University providing clinics, the Department of Health moved the Integrated Services Program to the Bureau of Maternal and Child Health. Starting July 1, 2017, the Maternal Child Health Bureau, had to create a plan to establish a way to continue to serve CSHCN statewide for these specific services. In July 2015, the Department gave up their clinic space, terminated 48 healthcare employees and did not have the capacity of funding to restart multidisciplinary services as in the past. The Integrated Services Program took about a year to create a new plan of service, hire, and gain approvals. The Integrated Services Program team continues to perform care coordination, transitions and referrals. The Program re-engaged with four of the local health departments (LHD) throughout the State. The Integrated Services Program supports an on-site care coordinator at 4 of our 13 local health department. This coordinator provides care coordination to the CSHCN in their community. The Integrated Services Program brings an Occupational Therapist, Physical Therapist, Speech Pathologist, Psychologist and Advanced Practice Registered Nurse to the rural four LHDs. They perform assessments and refer the children to specialists either in their community or at the closest service area. Another significant change during this period of time was the Newborn Blood (Heelstick) Program was separated from the other Newborn Screening Programs after 50 years of being in the CSHCN Bureau and moved to the State Lab. This occurred July 2016. The CSHCN Budget has reduced over the past 10 years over $1.5 million. This reduction in both the State general fund and Federal grant funding has affected the capacity to serve and expand services to CSHCN throughout Utah. 42 Key Informant Interviews While many of the topics raised for children also applied to Children with Special Health Care Needs, there were also a number of topics that were specific to this sub-population. There were some distinct differences in the comments between those in urban areas of the Wasatch Front and those in the more rural areas of the State. Need/Demand for Services - Most respondents commented on the need for services, including what is at least perceived as an increasing demand for services related to Children with Special Health Care Needs. Respondents who were providers discussed various disorders which they see in the children in their jurisdiction. These range from developmental delays and attention-deficit/hyperactivity disorder (ADHD), to cystic fibrosis and Autism Spectrum Disorder. One respondent suggested that the increase in demand may be an artifact of an increased ability to diagnose conditions earlier and more accurately. However, the ability to provide services has not kept up with the improved diagnostics. “I think one of the other things that we’re seeing and that’s driving this demand is just our increased ability to assess these needs. Right? Two decades ago, I’m not saying that the need wasn’t there, just the ability to assess and understand and take of that of that – so, there’s that aspect of it; is we’re – I think the progression of the science, of being able to diagnose and understand and assess what these children’s needs are, has increased that need as well. And I don’t think the – our infrastructure’s been able to keep up with the ability to identify those.” Accessing services in rural areas, such as ABA counseling, specialists, and nursing is difficult and often simply not available. Parents and CSHCN often have to travel several hours for care and make multiple trips due to multiple appointments. “They're being referred up to Provo, Salt Lake, to get a diagnosis. And then, even after the diagnosis there's not any way to get the behavioral therapy, ABA services, to help them so that they are able to lead a better functioning life.” Developmental Delays and Coordination with Schools - With the population of Children with Special Health Care Needs, a coordinated effort between the local health department, health care providers, the schools, and often, other providers is necessary. In an urban area, the health department felt they did not interact as much with this population because one of the clinics (a public/private partnership with a University practice) dealt with their needs. In the more rural areas of the state, respondents often commented on the role that schools play both in identifying problems, as well as providing early interventions services and early pre-school for children with any kind of delay. “Our school district at least provides a preschool program starting at age three. You have to – at three though, you can enroll if you have some kind of learning delay – learning developmental delay, which could be anything. Whether it’s something mobility related or something speech related, it doesn’t matter, but you have to have a documented delay. I believe at four years old they’ll let you into preschool. And then at five, kindergarten starts as a full-time – like all-day kindergarten.” 43 While children identified early have some resources available to them through the schools, sometimes the schools just do not have the resources to meet all of the needs of the children. Again, in a rural area of the state, one respondent talked about the potential long-term consequences of not meeting the needs of these children. “And we do think of the ADHD kids as kids with special needs. And we’re always fighting with the school about implementing 504 (civil rights law that prohibits discrimination against individuals with disabilities) regulations. And the school would like to do it, but they don’t have the personnel who are trained to take care of them. So, oftentimes, [older children] are viewed as discipline problems. And a lot of them end up being juvenile delinquents. And usually because once they leave a certain setting, when they go to another setting, you almost have to redo everything. And if you don’t have an advocate for that child, they’re just looked at as a discipline problem. And usually they just drop out of school. So, it’s not a school problem anymore, it becomes a community problem. “ There is a perception in some areas that Early Intervention was going away and there was nothing else to replace it. Participants were concerned that without access to early intervention programs and to preschool, kids are starting kindergarten behind, and even when diagnosed with learning issues, are not able to get treatment anyway. Early childhood programs, including lack of access to preschool seem to be a concern. “The percentage of kids entering that are not where they need to be is really high. So, the teachers are like, “We’re trying to catch them up. They’re not even to where they need to be” because we just don’t have a strong early childhood education going on in our area with daycares and preschools.” Access and Waiting Lists - Across the state, access to care was a concern, particularly in terms of timely care. In urban areas, there are often not enough providers to meet the demands, and this generates a waiting list. In rural areas, this is intensified by the fact that specialty providers are not available in the local area. Specialty provider teams from Salt Lake travel to rural areas four times a year. One health department representative stated that they, “worked with the School District to try to make sure that (they) can contact families that have children with special healthcare needs. So, (CSHCN Coordinator) had done a lot of work to do some outreach to get people to come in. And we ended up not having some of the specialists we had anticipated.” This makes the care received untimely and the availability of services may be unreliable. Another complication in some of the rural areas is the fact that communities are right on state lines. Particularly in the Southeastern portion of the state, populations live on both sides of the Arizona and Colorado borders. Specialized health care is most available at the Indian Health Services (IHS) clinics in Arizona, which could be as much as 120 miles away. 44 Parent Perspectives CSHCN Parent Focus Group Discussion Access: According to participants from the CSHCN focus group, there are long waitlists for CSHCN programs and services, especially for the Division of Services for People with Disabilities (DSPD) benefits and their medical waiver programs, as well as for medical and therapy specialists. For DSPD benefits, a family must be eligible for Medicaid in order to be eligible for these programs. A family (the mother) must also be vigilant in following up every so many weeks/months with DSPD to see how much longer they have to wait. Funding for these services is an issue and a possible reason why they cannot accommodate as many people as they should. These programs and services are highly utilized and the recommendation to expand them to serve more people was loudly reiterated by each participant. “It is frustrating. I mentioned this at the beginning, but they know my daughter’s abilities because they have her testing, and yet, they offer the school that is catered for special needs the very last, and I had to keep asking and keep asking. Same with Early Intervention. As much as I love that program, they didn’t give her the therapist she needed until I said, “No, she still needs occupational therapy. Why doesn’t she have occupational therapy?” They didn’t get her into horse [therapy] until she had three months left because there is a wait list. So, they still don’t have enough resources to provide us, even though the program is great. How can you choose who gets speech therapy and who doesn’t? My daughter doesn’t speak. She needs speech therapy.” “My daughter, for example, needs to get injections in her arms so that her muscles aren’t so tight so they can loosen up, and then we’ve been on a waiting list for six months, and then they called and said, “Sorry, your appointment got canceled.” So then, we were on the waiting list – we can’t be seen until February, but she’s needed it for a while. I think the waiting list, too, with DSPD or medically complex – there are a couple different waivers out there, and we’ve applied for both and went through all the paperwork, and we were told that we qualified for DSPD, but again, on the wait list. I think it just sounds like there’s this overwhelming shortage of resources for families in need in Utah.” Funding for CSHCN services - Many healthcare providers and specialists are involved in their children’s treatments and therapies. Sometimes insurance only covers a certain number of visits to a specialist which causes financial stress and could interrupt the health and wellbeing of their child. Sometimes insurance won’t cover a specific medical device or formula that’s specific for a CSHCN who uses a feeding tube. Participants mentioned having to ask doctors’ offices to write letters of why a medication is medically necessary for their child so they can get the insurance to pay for the medication. A lot of paperwork is inevitable and care coordination is important when you have a CSHCN. “I think we just have – like we’ve talked about, we have so many demands on us as the parents of children with special healthcare needs, and then, we’re doing the best with what we have, but we have all these limitations that are outside of our control. So, for example, insurance will say, “You only get 20 therapy visits a year,” and we have a chronic condition where we need two appointments a week. That’s 100 appointments a year, and we’re only getting 20, and we don’t have the funds to pay for it out of pocket. So, limited funds.“ 45 “Just thinking along the lines of what solutions might help, it would be so helpful if, up front, I knew the cost of a medical procedure because I don’t find out until the bill comes, and sometimes that’s staggering… What? I didn’t know it was going to cost that much.” So, I would love to know things up front, and then I would love there to be a financial counselor who could say, “Here’s what it’s going to cost; here are your options. Insurance is only going to cover this much, so maybe we could –” This would be awesome – what if we had a donor pool in the state of Utah where people who felt generous could donate to, and it would probably involve more paperwork and applying for things, and there would probably be a shortage, but what if that was one of the options for paying for your bills? I know Shriners does something like that, where they have donors that help pay for some of the bills that families can’t afford.” Recommendations - Parents reported often feeling overwhelmed and needing some supports to help them care and advocate for their child/children. They suggest more parent support groups and appreciate warm handoffs by care coordinators and providers. Continuity of care should be streamlined, and after Early Intervention, they should be lined up and registered to go into the next program for their next phase of development. Parents described wanting more opportunities for training and attending conferences to learn more about their child’s condition. “And so, I think that one of the things we need as parents, especially for a state, is we need to have not just more streamlined processes and more information and connection, we need more support financially. It would be nice if we didn’t have to figure out which waiver we need to sort out. We have a lot of questions that we need answered, but at the same time, when you’re spending 90% of your day taking care of somebody else, it’s hard to get those things done. It’s hard to plan to take care of the finances, it’s hard to plan to get to the next doctor’s appointment, so for me, I think there’s a lot of room for improvement just creating a program that is going to actually help us more than give us an extra job to do, if that makes sense.” Key Findings from CSHCN Parent Survey Participant Characteristics The vast majority of survey participants, 90.5%, identified as mothers (n=891), 8.7% identified as Hispanic or Latino, and 92.4% identified at white race (Table 16.). Racial and ethnic minorities were underrepresented in the survey when compared to the general population and income. Most respondents 69.1%, reported having one child with special healthcare needs and more than one quarter (27%) had two or more children with special healthcare needs. Participants tended to have higher incomes than the average population. CSHCN Conditions In the UDOH 2019 CSHCN parent survey, 1,161 parents of CSHCN reported at least one chronic health condition out of 21 possible listed health conditions (Table 16). The most common health condition CSHCN experienced was developmental delay (45.1%), followed by Autism Spectrum Disorder (ASD) (38.9%), Attention Deficit Disorder (ADD) or Attention Deficit / Hyperactive Disorder (ADHD) (32.8%), and Intellectual Disability (30.2%). 46 Table 16. Conditions of Children with Special Healthcare Needs, CSHCN Parent Survey, Utah, 2019, (N=1161) Condition n % Developmental Delay 524 45.1 Autism Spectrum Disorder (ASD) 452 38.9 ADD/ADHD 381 32.8 Intellectual Disability 351 30.2 Behavioral Concern 331 28.5 Mental Health Concern 284 24.5 Chromosomal / Genetic Defect 223 19.2 Communication Disorder 211 18.2 Physical Disability 158 13.6 Prematurity / Birth Complications 154 13.3 Adverse Childhood Experiences (ACEs)/Trauma 140 12.1 Heart Disease / Congenital Heart Defect 129 11.1 Seizures / Epilepsy 127 10.9 Foster Care / Adoption 124 10.7 Deaf / Hard of Hearing 119 10.2 Birth Defect 117 10.1 Brain Injury 112 9.6 Dental / Oral Health Concern 108 9.3 Endocrine, Metabolic, or Nutritional Disorder 106 9.1 Respiratory Disorder 91 7.8 Visually Impaired / Blind 74 6.4 other 338 47 Key Challenges for Parents of CSHCN Parents are most concerned with the cost of care and health insurance and making sure they can access care and resources needed. Figure 6 illustrates the various challenges faced by parents. Insurance - More than half of the CSHCN parents (64.9%) reported their child’s/children’s insurance type as private/commercial, while (38.5%) of the CSHCN had Medicaid or a Medicaid waiver. Approximately (17.1%) of parents identified “cost of care/insurance” as the largest barrier affecting parents of CSHCN Approximately half of the participants agreed with “my child’s/children's health insurance(s) covers all of his / her health care needs” and about 35% disagreed or strongly disagreed. Figure 6. Top Challenges Impacting CSHCN, Parent Survey, Utah 2019 48 Medical Home Primary Care Provider - A large majority of the CSHCN (88.3%) had a primary health care provider, and (26.3%) of those had difficulties accessing health care providers in the last 12 months. The three most frequently reported health care providers CSHCN have difficulties accessing were mental health providers (44%), behavioral therapists (39.6%), and physical, occupational, or speech therapists (33.2%). The main reason for accessing the healthcare providers is “insurance did not cover.” Some participants reported PHC providers help with “arranging appointments to specialists when needed”(35.8%), and “connecting your family to other services and agencies” (33.2%). Access to Care – Even insured families have difficulty in accessing needed equipment, prescriptions, and certain services due to inadequate insurance coverage. In addition to accessing health care providers, 29.9% of CSHCN parents reported difficulties in accessing equipment in the last 12 months. The large majority of the CSHCN parents, 71.9%, reported difficulty of accessing prescription medications. Forty nine percent of parents reported that the main reason for difficulties in accessing any equipment or prescription was that their insurance did not cover these costs. Overall, (36.7%) of the CSHCN had difficulties accessing any service. The three main types of services CSHCN parents had difficulties accessing were: • • • Recreational and social opportunities (37.5%) Respite care (33.8%), and ABA therapy (33.2%). Care Coordination - A small proportion of parents (36.7%) responded that they had a source of childcare coordination other than the parent respondent. Almost half (48.7%) of the parents stated that a primary care provider or pediatric specialist was their child’s main source of care coordination. Utah Family Voices/Utah Parent Center and the Help Me Grow Utah programs are the most utilized support agencies for parents (23.7%) . Approximately (43.0%) of parents do not participate in a support program. A large majority of parents (71.2%) reported to have never received an evaluation or diagnostic service from a local or state health department: (16.8%) reported to have utilized a local or state health department for health information. Parents identified “access to care/resources” as the second biggest barrier to their child’s/children’s healthcare (13.6%) . Transition to Adulthood Parents of a child/children with special healthcare needs age 12 or older accounted for (45.3%) of respondents (N=459). Approximately (60.1%) of parent respondents do not feel prepared for their CSHCN’s transition to adulthood: (37.0%) disagree and (23.1%) of parents strongly disagree. Only (16.6%) of parent respondents either agree or strongly agree that they feel prepared with their child’s transition to adulthood. The top four transition topics that parents reported feeling prepared for were identified as educational plans (37.7%), employment plans (23.1%), financial plans (22.7%), and health insurance plans (21.2%). Parents who have not prepared for any topics related to their child’s transition to adulthood accounted for (25.9%) of respondents. Parents (33.2%) and schools (18.6%) were identified as the primary sources of their child’s preparation for the child’s transition to adulthood (Fig. 5.2). “Receiving help from an 49 expert” was reported as the most valued source of health information that would help a parent feel more prepared for their child’s transition into adulthood (16.5%), followed by “information of programs offering financial assistance” (13.9%). “Transition to adulthood” was identified as the fourth largest barrier affecting parents of CSHCN (7.2%). Service Utilization Utah Family Voices/Utah Parent Center and Help Me Grow Utah program are the most utilized programs among parents of CSHCN, 23.7 of respondents. Forty three percent of parents of CSHCN said that they do not participate in any CSHCN programs (Figure 7). The Top barriers to managing CSHCN related to cost, and access, developmental delays, planning for transition to adulthood, and navigating services, including needing more information about what is available. Figure 7. Participation in CSHCN Related Services, CSHCN Parent Survey, Utah 2019 50 Information Preferences Online sources of health information were utilized among (64.5%) of parent respondents. Facebook was the most preferred social media source for health information and Twitter was the social media source identified to be the least likely that parents would utilize for health information. A health information hotline would be utilized among approximately (43.3%) of parents. Table 17 describes parent preferences for health information. Table 17. Health Information Preferences, CSHCN Parent Survey, Utah 2019 n % Other than PCP, where do you get health information? Internet search engine Family/Friends Disability/Family organizations Online family support groups Social media Health department In person support groups 749 475 446 320 306 195 119 65.36 41.45 38.92 27.92 26.7 10.02 10.38 Agree or Strongly Agree they would use… Facebook Instagram Twitter Pinterest I do not use social media for health information 466 198 40 159 475 40.66 17.28 3.49 13.87 44.68 Strongly agree or agree neutral Disagree or strongly disagree 379 485 282 33.07 42.32 24.61 Best/preferred method to receive info from UDOH Social media Information hotline Text messaging Mailed letter WIC clinic Phone call In person / face to face Email Webinar Health fair 346 186 144 134 77 75 74 58 34 18 30.19 16.23 12.57 11.69 6.72 6.54 6.46 5.06 2.97 1.57 Likely to use a hotline 51 4.7 Adolescents A total of 609 people answered questions about adolescent health in the online survey. Detailed results are found in Attachment G. The vast majority, were female (79.7%), 87.8% were White, 8.2% were Hispanic or Latino, 1.6% were Asian American or Asian, only 0.4% were American Indian, Native American, or Alaskan Native, and there were no Black or African American respondents. The sample suggests that non-white participants were underrepresented and African Americans or Blacks were not represented at all. Rankings did not vary much by age group with the exception of those under 25. In this group, oral/dental health ranked #2 and teen pregnancy ranked 8th. It is interesting to note that teen pregnancy did not make the overall top 10 list. Neither made the list among age groups 35 and over, while violence, abuse, and neglect did rank #6 among those ages 25-34. The majority of participants reported their primary role as a clinician or public health professional, 72.3% (n = 413), while 27.7% (n=158) identified as a parent or community member. Priority rankings were similar in these groups without any notable exceptions. The majority of respondents, 82.0% (n = 464), were urban dwellers, compared to 18.0% (n = 102) rural dwellers. Priorities were very similar with the exception of overweight/obesity and marijuana use. Overweight ranked 9th among urban dwellers and marijuana use ranked 8th among rural dwellers. Concerns by race and ethnicity were very similar among different racial and ethnic groups with no notable differences. Table 18 lists the top ranked priorities for adolescent health. Table 18: Top 10 Ranked Adolescent Health Issues Stakeholder Survey, Utah, 2019 Source, Utah Department of Health, Online Survey, 2019 52 Key Informant Interviews The health issues and concerns described by key informants across the state mirror results from the online survey for adolescent health. Major themes included concerns of mental health and suicide, inadequate sexual health education, and substance use, particularly vaping and marijuana. Other concerns included excessive screen time, inappropriate texting (sexting), bullying, getting the proper amount of physical activity, and eating healthy foods. In most cases, health department personnel noted that adolescent health was not a significant focus, and that they mostly see adolescents for schoolbased vaccinations and conduct some health education activities, such as tobacco prevention. A healthcare provider described the range of adolescent health issues that she sees through her clinical work, which were echoed by many other participants: “We're seeing a lot more depression and anxiety in adolescent health. We're facing a serious access issue right now with that. Just more of hookup culture. Just casual partners. So, they're having more partners… They're experimenting with a lot of drugs, which is normal for adolescents, but it's a little more high stakes in our area because of the opioid crisis. Excessive screen time. Not enough sleep. Then bullying. I've seen a lot of bullying and whether that's on-the-phone bullying, text bullying, whatever, there's a lot of that. What else? Poor eating habits.” ~ Healthcare Provider 53 Mental Health and Suicide Participants would like to see more programs in place to help prevent depression and suicide, and increase access to mental health screening and counseling. When describing mental health in relation to homelessness, a participant noted that “We have failed with everybody that is 16 years of age and older. And we’re not going to spend time on that group. We’re going to focus on those that are under 16.” Bullying, especially among LGBTQ youth, was described as occurring in the schools and at home. A success noted in some health districts was the development of community coalitions focused on suicide and school-based programs such as Hope Squads, which focus on suicide prevention. Sex Education, Life Skills, and the need for School Nurses Sex education and family planning is generally not provided by health departments. Although, health departments may interact with and educate youth when they seek testing for sexually transmitted infections, or when they are pregnant and using WIC. Teen pregnancy was described as a significant problem in rural areas where a participant estimated that about 10% of students were pregnant at the local high school. Participants described social norms in some rural areas, and cultural groups that perpetuate the cycle of teen pregnancy, such as apathy, low expectations for other life-paths, and multiple generations of teen pregnancy in families. Educators and health officials described a barrier to providing sex education to youth due to confusion over what is allowable under state law. After describing that most people support more comprehensive sex education in schools, a health official shared this fear by educators: “And most of the schools, just out of fear of getting in trouble, then, I think, revert to – not abstinence only – but abstinence-based curriculum. I’ll be the first to admit that abstinence is the best – I mean, it’s the only 100% effective. But we have to someday come to the understanding that, yeah, teach that, but understand that a lot of adolescents are not going to comply with that. And we need to recognize that and try and address that if we can.” Community clinics and organizations sometimes address the sex education gap. Community-based activities for youth were described as a great way to engage adolescents. An educator described how a local clinic put on a Girl’s Conference. “It was pretty cool. They had guest speakers, and it was a lot of their clinic staff who were talking about like – these are contraception options. These are STDs. These are possibilities and just like kind of a whole dating violence, cyber issues in terms of cyber dating.” Some success was noted by health departments with after school adolescent health education programs and peer educator programs such as Teen Outreach Program® (TOP®), which includes sex education and lifeskills training. “…what we work on is the TOP program. Try to get those early intervention life skills decision-making processes to those kids that are at elevated risk.” It was noted by one health official that only two health departments in the state do school nursing. School nursing was described by many participants as a very important resource for youth, and could play a bigger role in addressing common health concerns for teens. However, due to very low school nurse to student ratios (lowest in the nation), school nurses have to 54 cover multiple schools. In one district, the role of the school nurse was limited to visiting the school once or twice a semester to train office staff on how to administer medications. The importance of school nursing was underscored by a local public health professional, including the growing potential for them to identify and help address mental health issues; “…our school nurses do a lot. They interact with the youth, they do abstinence programs, and health screenings, and healthcare plans for those that require – I think more and more of that is including mental healthcare services and counseling. So, that’s probably where we’re reaching our adolescents.” Substance use / Tobacco / Vaping and Marijuana Concerns about substance use and abuse was a common theme reported by key informants. Vaping, marijuana and alcohol use were the major substances of concern, but meth, heroin, and other drugs also came up in conversations. Vaping was the issue most commonly cited. Many were concerned with the perception that adolescents believe vaping is safe, and marketing practices that appeal to youth, such as offering flavors and the packaging. The proliferation of vendors was also a concern, especially when the stores are selling other items attractive to youth and do not appear to be “vaping” stores. Cigarette smoking was mentioned occasionally, but was not to the degree of vaping. A main concern with vaping was that kids who would not consider smoking cigarette will try vaping because they perceive it as a healthy alternative to smoking tobacco. In terms of marijuana, there are concerns that teens perceive it to be healthy, perhaps due to the media attention of “medical cannabis,” and that it is OK to use marijuana because of legalization laws. People in counties near the border of Colorado and Nevada are particularly concerned about the normalization of its use and access to legal purchase. A health official from a border district described that the community is concerned about marijuana use among youth by noting: “…there was a lot of concern about marijuana use. The normalization of marijuana use, where we’ve got recreational marijuana close on several sides, and it is somewhat normalized use on the reservation, that a lot of the teens in the area think that it’s normal. Or even healthy.” Vaping was the most commonly discussed substance issue for adolescents by key informants, followed by marijuana, heroin and alcohol use. Participants indicated that urban areas have more resources for prevention and treatment for adolescents compared to rural areas. Some parents are unaware or have no knowledge about vaping or of the health risks to their children. Schools are trying to implements ways to prevent vaping in school bathrooms or on school property, but it is a work in progress. “I don’t think parents realize how big vaping has gotten. They have no idea – this will be in your area. When we sat in – when my daughter graduated from fifth grade, they sent the kids back to their classes, and then they spoke to the parents – the police spoke to the parents. They taught the parents about what vaping is and what it looks like. And there were a lot of parents around me that were like, “What is that?” I could tell they didn’t know… and they didn’t get that it’s happening so young. And in the LDS culture it’s happening quite a bit as well. So, it’s everywhere. So, it’s something that’s very prevalent right now.” (Public Health Nurse) Public health workers report that adolescents want in-depth and scientific information about tobacco and vaping. Multiple participants reported a concern that youth are either ambivalent or even have 55 positive views of marijuana in terms of health benefits. Key informants were concerned that substance use in adolescents is a coping mechanism to help students mask their problems and to escape from their worries or stress. “Every time we talk to the kids about what kind of message reaches you about e-cigarettes or any other substance, the teens want to know the facts. And they don’t want just the facts, they want to know where your facts came from. So, you can’t just tell a kid it causes cancer. You have to tell them what the research is. Our teens are very savvy. And they want good – they want health information that has been vetted… …and I don’t know – I don’t know if I should say this – but yet they’re weirdly not super nervous about marijuana information. There’s this positive attitude towards marijuana and a misunderstanding of the health effects. And sometimes they don’t realize it sometimes masks their mental health situation they’re trying to deal with, so whether it’s alcohol or marijuana or any other substance. They are using it to mask something sometimes. Not always, but that seems to be a problem.” (Public Health Nurse) Physical Education Schools also suffer from a lack of physical education. Many schools, especially elementary schools, do not have Physical Education teachers. An educator for a rural Kindergarten – 8th grade school noted that “We don’t have a PE teacher, and it’s on our classroom teacher to provide a PE class. And usually they’re so swamped and stressed out from their day that they’re like – well, we’ll just take out the scooters, and you guys can just run around….” Youth Perspectives – Summary of Focus Group Discussions The major themes related to adolescent health that emerged from the discussion among males and females include substance use, mental health issues, bullying, body image, and lack of sex education. Each theme is discussed in detail below, along with quotes from participants that stood out during the focus group discussions. Mental Health Issues Adolescent girls and boys expressed an immediate need for programs in place to combat depression, suicide, and anxiety. Furthermore, stress and toxic relationships emerged as major issues along with the overwhelming pressure of trying to make an impression. Two female participants noted that “I’m just a tiny speck on another tiny speck in this whatever universe.” and “just the pressure of trying to make an impression...when you’re so little compared to everybody else.” Male participants stated other issues like obesity, substance use, and bullying, took a toll on their mental health, increasing feelings of anxiety and depression. Physical Health and Body Image Concerns about body shaming, sexual harassment, and dating violence were prominent themes reported by participants. Most male adolescents noted that “That’s a big thing, though, body image.”, “I was bullied because I was overweight.” A female participant spoke about sexual harassment occurring at schools and the incapability of professors to handle the situation appropriately, 56 “I just wanted to say that boys at our school – it’s like harassment when we tell them to stop and they don’t stop, because they won’t take us seriously. Because we’re just girls and stuff. It’s hard to deal with it because we don’t know if we’re supposed to do something about it or if we’re just supposed to leave it. Some of us go and we’ll try to ignore it, but it’s hard to ignore it when they keep doing it multiple times. And then the teacher, they’ll see it, and then they won’t do anything about it. They’ll just leave it as is.” Body shaming and bullying can greatly impact one’s self-esteem and lead to mental health issues. It can create self-doubt as well as insecurities, and efficient programs need to be implemented to prevent such events. A male participant is concerned about the consequences of harassment by noting “Body image – somebody says something to you that makes you feel sad. Makes you feel like you’re nothing. And that’s what people see in a mirror. They look in a mirror when somebody says that. That’s what they think they are. And they’re not. They’re better than that.” Bullying Males and females most likely will encounter bullying in their adolescent lives and as a result can impact how they view themselves and how they interact with others. A male participant voiced his thoughts on the effects of bullying saying, “A person getting bullied is what leads to suicide. Or being bullied leads to drugs or worse or school shootings. That’s what it leads to.” A female participant voiced her thoughts on bullying within the LGBTQ+ community, specifically physical harm, and potentially a plan of action to help those who are afraid saying, “… some of my friends are afraid to use the bathrooms at school. And I have a trans friend who someone told him that if he ever saw him in the bathroom again, he would beat him up. So, if there were gender neutral bathrooms … or like separate bathrooms so people wouldn’t be scared.” Peer Pressure In addition to bullying, peer pressure among adolescents can play a large role in their day-to-day life. Peer pressure can be used as a way to influence other peoples’ decisions and actions. Female participants had more to say on peer pressure that they have seen and/or experienced compared to their male counterparts. One noted that peers can use guilt tripping as a way to not “snitch” on another person saying, “They peer pressure you into not snitch[ing] because they guilt trip you like, “Oh, I’m going to tell everybody this, this, this, and this that you did.” While another female participant stated that entitlement and profiling can be used as a peer pressuring method saying, “… People are like, “Oh, your last name is this or your parents are this, you must do this.” So, then you have to prove to them that you do it to impress them or prove that you don’t do it so that they don’t hate you.” Loneliness and Attention Seeking Males and females go through many changes in their adolescent years, constantly learning and growing. This time period can potentially be a struggle for many and for various reasons. One challenge male and female adolescents have in common, and discussed among their prospective groups, is being lonely and seeking attention to combat that feeling. When asked about the issue of suicide and what might be going on right now with individuals who are thinking about suicide, a male participant said, “They’re 57 lonely inside … they’re hurting. Nobody sees it.” Among female adolescents, attention seeking came up when asked about what issues in their school or community are a problem but aren’t being dealt with. One female participant noted, “I know somebody who faked depression once and that’s a huge problem” while another female added saying, “... when people draw on [themselves] to make it look like [they] cut themselves” with a third saying, “they do that at our school, but it’s because they downgrade themselves so much to the point where they’re just like, “I want attention.” As the conversation continues, female adolescents voice that more attention given to them is needed in terms of seeing how life is going and to provide any needed help. One female participant puts it this way, “just [having] someone to check in on us. That would’ve been awesome.” Sexual Education Although females were more vocal on the subject, both male and female adolescents communicated a desire for comprehensive sexual education programs. One female said, “I would say information-wise, I don’t see anything. Any information that I know, it’s from my family and I seek out. But it’s not really given..." Students also frequently mentioned that they did not receive adequate sexual education at school or at home. One female stated, “I wouldn’t even know where to go for resources or where I could go. Because the culture is so built around, “Just don’t do it.” But it’s like, if I do it, where can I get resources or where can I get stuff to make sure it’s safe?” Sexual activity appears to be an accepted norm for adolescents, with several females citing the occurrence of sex among their peers. “Abstinence is the really, really big emphasis in schools. But people are going to have sex anyway.” Teens alluded to risky sexual behavior as well. “There’s kids that are doing it [having sex] with high schoolers and people that are way older than them.” Female adolescents also mentioned fear of getting in trouble for discussing their sexual behavior, which may prevent them from receiving adequate knowledge and resources for safe sex practices. “... people who do have sex keep it on the down low. They don’t talk about it like, ‘Oh, I did this.’ But I feel like they feel like they’re going to get in trouble.” Substance Use Substance use is a major health concern for both male and female adolescents. Participants mentioned use of lysergic acid diethylamide (LSD), “Shrooms”, tobacco, cannabis (weed, THC cartridges, edibles, pen and shatter dabs), over-the-counter medications, prescription medications, nicotine (JUUL, vape) and alcohol. The substances most commonly mentioned were cannabis, nicotine, and alcohol. Adolescents commonly noted a connection between substance use and mental health. Depression, anxiety, overwhelming pressure, coping mechanism, and lack of hope for the future were frequently listed as explanations for use. A female student noted, “I know a lot of people that smoke just to kind of get away from the problems that they are dealing with.” Another female observed, “I feel like the reason that people are doing drugs or vaping or whatever, is because they don’t – Like, one, they don’t understand the consequences, but, two, it’s like they don’t care in a sense. And it’s like … Addressing that … Where is that “not caring” coming from? … and actually addressing the consequences of it, rather than attacking students and being like, “You’re vaping. I’m taking the doors off the bathrooms.” That’s not solving anything.” 58 Peer pressure was also mentioned as a reason for substance use. “I feel like friends are kind of a gateway for that. If you have a friend who vapes, it’s like, “Oh, if you’re doing it, like it can’t be that bad” (Female Adolescent). Participants also noted that substance use appears to be trending at younger ages. Several individuals noted use occurring as early as 6th grade, often initiated by older peers. “And for your question of like, ‘Where do they get this stuff?’ Well, vapes and stuff, they have older siblings that go to the shop and just buy it for them” (Female Adolescent). One male student described his reaction upon observing an adolescent under the influence while at a classic skating center, “And I’m like, “You’re 12 years old, dude. Your brain hasn’t even developed. What are you doing now?” Cause everybody else there is older. Some people there are a lot older that do that stuff. And then, I don’t know how he got his hands on it, but someone gave it to him. And he just started going ballistic.” Substance use appears to take place both at school, and outside of school. A male student observed, ”I know a lot of alcohol, or at least the alcohol situations that I have seen, is more outside of school and at home. It’s more easily accessible at home, and you’re less likely to get caught.” Substance use is also prevalent within the school system, and students seem unhindered by punitive measures. Participants found correctional measures such as removing bathroom stall doors and installing alarm systems, ineffective to preventing substance use. A female participant conveyed her frustration after her school closed down all but one bathroom per building in order to prevent students from using substances on campus, “...you’d have to walk across campus to go use the bathroom, which I feel like wasn’t that great. People were still ending up doing drugs anyways. It’s just like … ”Don’t do this.”… and then leaving it at that. I feel like that’s not very effective.” Additionally, students do not feel that teachers are able to authoritatively stop substance use in the classroom, either because students are unafraid of getting caught, or because teachers are not addressing the problem when they notice it. One female said, “...it’s gotten to the point where the teachers just accept it in classes, because they’ll just be vaping. The teachers won’t do very much about it. They’ll be like, “Oh, that’s nice.” And then continue on with what they’re doing.” Participants acknowledged that substance use can be harmful to their health and are open to effective, preventive measures. One male student remarked, “We need something to help kids get off drugs…” Others recounted personal experiences that depicted harmful behavior associated with substance use. Describing an encounter with a friend who had used a cannabis shatter, one male said, “...my friend --he did it [dabbed a shatter] … I didn’t know that he did it … but at the time when I found out, he was passed out on the floor, and he was rushed to the emergency room.” Despite the realization that substance use may hold risky consequences, students also expressed the view that substance use is a normative behavior in the adolescent experience, and they were uncertain about how to combat the problem. One male remarked, “Drugs and alcohol will always be a part of high school life.” Another replied, “It’s an ongoing problem.” 59 Strengths/Assets Female students frequently mentioned the importance of student coalitions both within the school, and with outside organizations. Programs like Planned Parenthood, Utah Voices, Utah Safety, Girl’s Club, Leadership Club, and church youth groups were listed as helpful resources for teens to combat various health challenges. One student stated, “We do have this thing in our school [with the] University of Utah. They come in every Wednesday and they talk to kids at our school. We talk about anxiety and depression, but they bring it up in just a good way. It helps. It’s good. I feel like more schools should have it.” A female student also believed that programs that improved student’s access to mental health services was helpful, citing a school program that issued tablets to students to schedule appointments with a counselor. Barriers / Challenges School Counselors - A prominent barrier to adolescent health recognized by the participants is access to school counselors. A low counselor to student ratio and lack of training are major concerns. “I have good counselors at my school, but there’s only two. So, they take care of like, I don’t know, 600 kids each. And a lot of those kids have problems, so they’re always busy.” (Female Adolescent) “It would be nice if there were counselors that were there to check in on you, because sometimes it’s hard to seek out help.” (Female Adolescent) It is crucial to have more than a single counselor available to the students at school, who can efficiently perform timely check-ins and are well trained and proficient at their job. Toxic Environment - High school can be challenging for anyone, owing to an unaccepting and toxic environment with the fear of being judged and harassed. LGBTQ adolescents face additional obstacles of abuse, violence, and harassment. They are more likely to attend school in fear of being bullied and having their trust broken. “..any friends that are in the LGBTQ community, and they’re afraid to tell people that because I’ve seen guys at our school beat up other guys at our school because of that… …There’s kids that don’t want to tell anybody that they’re bi or they’re gay or something, because they’re just scared that people will judge them or put them down. And it’s hard to see them hold it in. Then they explain it to us, like boys – I have a couple friends that are gay and stuff, and they don’t want – They’ll break down because they told somebody. That person – They thought that they could rely on them, but they really couldn’t because they started telling the whole school. It really just puts them down, which is hard to see them go through that.” (Female Adolescent) Unapproachable Parents - The participants discussed the implications of parental behavior on all aspects of adolescent health. Parental rejection can greatly instill feelings of anxiety, self-doubt, fear, emotional isolation, and depression in kids, especially LGBTQ youth. A healthy relationship between the parent and the child ensures healthy conversations, preventing them from getting into bad company or practicing inappropriate behavior. A female participant expressed a desire for approachable parents by 60 noting, “I just feel like, at the end of the day, it’s either going to be your parents’ fault, because they don’t talk to you about it... It’s either you bring it up and they are like, “Oh, don’t talk about it. You’re not supposed to talk about it.” Or they just start saying jokes about it like it’s funny, but it’s not.” Recommendations from teens: Counselor Training/Awareness - Counselor availability, previously mentioned, can be seen as a barrier as the ratio between counselors and students is low. When female participants were asked what issues in their schools were a problem but weren't being dealt with, counselor support or lack thereof was brought up. Female adolescents feel that the support they receive from counselors could be better or feel that counselors could be better equipped to help adolescents with their problems. This recommendation of better counselor support was explicitly expressed among the female participants as one noted, “I went to them when I was just dealing with something hard. They were like - the guy told me, “I don’t know what to say.” He told me that. And I was like, “Okay.” Students sometimes feel that they are only there to fulfill the counselors job requirement rather than actually being cared for and/or provided any help during a difficult time. A female participant recounted her experience by saying, “... or they’re just like, “Next.” … And you’re like, “Did you just kind of throw me under the bus…?” I’m just sitting out there one of your hopeless students or whatever. Just another check on your list.” A female participant expressed how some students may go to counselors for a mental health resource by saying, “... I know a lot of students go to them for mental health, … but I feel like they’re not - I mean, they could be trained on it, but I feel like they’re sometimes not the best options to go to. And then they’re the only option to go to. So that’s kind of rough for a lot of people. “I’m struggling with this, and I can only get help with so much.”” Participants were then asked what programs they would like to see happen in their schools. A female simply said, “I feel like there should be better counselors, I guess. Easier options to reach out to. Instead of people who don’t care.” Another stated, “I guess more mental health resources that are accessible and actually useful. SafeUT is not a solution” These female participants expressed the need for better, more accessible counselors and mental health resources as a way to better themselves while at school and during a tough time of life. Modifications to Current Sexual Education Curriculum - The State of Utah utilizes an abstinence-based discourse, which relies heavily on home-centered sex-education in order to fill in the gaps not covered in school. Under the current General Provisions for sexual education, the Utah office of Administrative Rules states that educators “...may not teach the intricacies of intercourse or erotic behavior, advocate premarital/extramarital sexual activity, or advocate the use of contraceptive methods.”16 Male and female participants alike frequently expressed a desire for a more comprehensive approach to sexual education. One male said, "... I think they shouldn’t exactly focus more on abstinence, but teaching safer sex, because it’s going to happen. It happens. And it’s better to be safe, and know what to do in those situations, than have absolutely no clue." Sexual education curriculum is frequently a topic that is brought up for amendment in the State of Utah, but progress towards reform has been slow. One recommendation, consistent with the apparent need stated by adolescents, is to adopt a comprehensive sexual education curriculum. 61 5. CONCLUSION In conclusion, this assessment served to inform the UDOH about MCH and CSHCN needs that can be framed using the National Association of County and City Health Officials (NACCHO) Mobilizing for Action through Planning and Partnerships (MAPP) model, which is modified here for use statewide and MCH/CSHCN. The four MAPP assessments as described in Figure 8 are summarized, followed by recommendations. Figure 8. MAPP (Mobilizing for Action through Planning and Partnerships) Model with Annotated Modifications for the Utah Statewide Public Health Needs Assessment, 2020 3. Community Themes, Needs and Strengths Assessment 3. Community Themes, Needs and Strengths Assessment Stakeholders, community members, parents, adolescents, and caregivers were asked questions like:parents, "What isadolescents, important toand improve Stakeholders, community members, MCH/CSHCN?" "How is MCH/CSHCN provided here?" and "What caregivers were asked questions like: "What is important to improve assets we have that can be used to and improve MCH/CSHCN and MCH?"do "How is MCH provided here?" "What assets do we have what arebe theused gaps? that can to improve MCH and what are the gaps? 2. 2. Public Public Health Health System Capacity System Capacity Assessment Assessment 4. 4. Forces Forces of of Change Change Assessment Assessment The The assessment assessment asks asks questions like: questions like: The The assessment assessment asked questions asked questions like: like: "What "What is is occurring occurring or or might occur that affects might occur that affects the health health of of our our the community or community or the the local local public health system?" public health system?" and "What "What specific specific threats threats and or opportunities are or opportunities are generated these generated by by these occurrences?" occurrences?" "What "What are are the the components, components, activities, activities, competencies, competencies, and and capacities of our capacities of our local local public public health health system?" system?" and and "How "How are the the Essential Essential are Services Services being being provided provided to to our our community?" community?" e.g. e.g. Legislation, Legislation, technology, value technology, value shifts, shifts, COVID19! COVID19! 1. Community Health Status Assessment 1. Community Health Status Assessment MCH/CSHCN Indicators were compiled by UDOH for 2019 and MCH /CSHCN Indicators were compiled by UDOH for provided in a full indicator report 2019 and provided in a full indicator report 62 1. Community Health Status Assessment Selected indicators from the 2019 Indicator Report (Attachment B). These indicators were selected for their relevance to findings from other parts of the assessment as well as their absolute relevance in terms of real gaps or deficiencies in health status. It is important to note that health status indicators tended to be much poorer in many cases for other racial and ethnic groups. These disparities should be reviewed and addressed in strategic planning. Health Insurance Percent of women of reproductive age who reported being uninsured = 14.7% Percent of children and adolescents who are continuously and adequately insured, ages 0 – 17 = 61.1% Access to Care Percent of children who have received dental sealants ages 6-9 = 44.9% Percent of Children with Special Health Care Needs, ages 0 -17 = 16.4% Percent of children with special health care needs who have a medical home, ages 0 -17 = 18.4% Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care, ages 12 – 17 = 44.9% Mental Health Percent of women who reported postpartum depression = 14.7% Percent of children and adolescents with a mental/behavioral condition who receive treatment or counseling = 50.0% Percent of adolescents who reported feeling sad or hopeless = 33.0% Percent of adolescents who reported making a plan about how they would attempt suicide = 17.1% Percent of adolescents who reported attempting suicide = 9.6% Percent of adolescents who reported being bullied on school property = 19.4% Percent of adolescents who reported being electronically bullied = 18.0% Substance Use Percent of adolescents who reported that they currently use an electronic vapor product = 7.6% Percent of adolescents who reported being offered, sold, or given an illegal drug on school property = 25.9% Percent of adolescents who reported that they have never drank alcohol = 69.6% Percent of adolescents who reported that they have ever used marijuana = 16.6% Immunizations Percent of children who have completed the combined 7-vaccine series = 67.9% Percent of female adolescents who have received at least one dose of the HPV vaccine = 63.1% Nutrition and Physical Activity Percent of infants who were exclusively breastfed through 3 months = 55.5% Percent of children who are physically active at least 60 minutes per day, ages 6 – 11 = 21.9% Reproductive/Sexual health Adolescent female Chlamydia rate, ages 15 - 19, per 100,000 = 1651 Teen birth rate, ages 18 - 19, per 1,000 female population = 30.0 63 2. Public Health System Capacity Assessment Systems issues were often described by stakeholders during interviews and focus groups, using terms such as ‘social determinants of health’, ‘health inequities or disparities’, and lack of ‘universal healthcare’. Systems issues included problems such as poverty, geography/rurality, and the lack of affordable and accessible healthcare for everyone. Groups described as vulnerable included people with low income, but with low-wage jobs so they do not qualify for Medicaid, immigrants, who are afraid to seek any governmentally funded service, and underrepresented minorities and their children. Socio-political norms were described as prevailing values of self-reliance and small government and used as a rationale to limit funding to health and social programs. Utah ranks among the lowest states in funding per capita for education, public health, school nursing, and has not been favorable to Medicaid expansion. Participants lamented that Utah describes itself as a family state, yet it does not pay for important services to help families thrive. Participants felt strongly that Utah needs to invest more funding into MCH/CSHCN programs. The Utah Indian Health Advisory Board made a specific recommendation to invest more into MCH/CSHCN programs. Despite limited funding, public health and other care workers were described as hard working and doing more with less. Specifically: More investments are needed in school health, CSHCN, WIC, and Home Visiting. More “situational awareness” among public health departments is needed to better support and fund equitable sexual health services statewide and foster better access to CSHCN services. Public Health funding distributions should consider tribal entities for MCH/CSHCN funding, along with local jurisdictions System Strengthening and Quality Improvement There are specific recommendations for process improvements for programs and services. A crosscutting process improvement would be to improve capacity to market health information to the public. Health departments are expert networkers and collaborators, however, there are additional opportunities to collaborate with healthcare and social service providers and other leaders to improve the design of MCH/CSHCN services and health outcomes. Workforce development – Public health professionals need continued support to perform well. They are dedicated and hardworking and compassionate, many wear multiple hats, and “do more with less”. Resources such as the CDC Workforce Development can help provide a framework for a strong and sustainable public health workforce. Actively promote health equity and address social determinants of health through strategic partnerships and investing in evidence-based programs. Consider recruitment strategies to increase diversity of staff who serve the community. 64 3. Community Themes, Needs and Strengths Assessment Stakeholders, community members, parents, adolescents, and caregivers were asked questions like: "What is important to improve MCH/CSHCN?" "How is MCH/CSHCN provided here?" and "What assets do we have that can be used to improve MCH/CSHCN and what are the gaps? Main themes included: Strengths/Assets, Mental Health, Affordable Care/Health Insurance, and Access to Care. Key Needs Participants identified top priority issues, such as specific MCH/CSHCN topics or services, but they also described issues that are systemic and overarching. Top concerns are listed next, but in no particular order as they are clearly interrelated issues. Top Concerns Mental Health – Mental health, including perinatal depression, depression, anxiety, and suicide were top concerns in all domain areas with the exception of the infant domain. Specific recommendations for mental health include: o Expanding mental health and substance use services for women, children, adolescents, and men/fathers. o Increase awareness of ACEs and need for parent and provider education. o Address high rates of perinatal depression and the barrier of stigma when talking to providers. o Address substance use and pregnant women (Opioids/Methamphetamine) is a significant problem, especially in some rural areas counties. o Expand the effort to increase the number of school counselors. o Youth Suicide, especially among LGBTQ youth needs to be addressed, stigma and bullying reduced. Violence/Abuse/Neglect – Violence, primarily family violence, was a priority concern in all five domains. Types of violence include intimate partner violence, child abuse and neglect, lack of parental involvement, and bullying of children and adolescents. Specific recommendations for addressing abuse and neglect include o Expanding parenting education. o Increasing access to affordable and quality childcare. o Increasing awareness of ACEs among parents and providers. o Addressing bullying, both and school and cyber. Access to Care/Health Insurance – Access to care related to affordability, including affordable health insurance, was a key issue for women, infants, and CSHCN domains. It was not noted as a priority for children and adolescents, but was a particular concern of parents with CSHCN. There is strong support among stakeholders for ‘universal’ type of insurance coverage. However, they think they are the only ones. “This is Utah” is a sentiment used implying that this [universal/equitable] health coverage will never happen. There is hesitancy to voice their true feelings on this matter. Specific recommendations for addressing access to care include: o Recognize and leverage broad support for universal healthcare or Medicaid expansion among stakeholders (professionals and parents). 65 o o o o Leverage partnerships to expand access to CHIP, Medicaid, and other health insurance options. Policy changes paired with outreach to vulnerable populations to alleviate fears of immigration problems. Streamline and speed up eligibility processes for CSHCN health insurance and disability services. Parents of CSHCN describe the very long wait for DSPD which delays critical services during their child’s developmental milestones. For example, they have been on waiting lists for 8-10 years. Increase funding and support services for children with special healthcare needs. Access to Care/Limited care – A variety of types of care were described as very limited and sometimes non-existent. This was the top concern for the CSHCN domain, where specialty medical care is extremely limited, especially in rural areas, and developmental screening is not comprehensive. Mental health and behavioral health services were described as very limited and as a system that is not nearly robust enough to meet the needs. Other programs and services that are wanted and needed, but limited in scope include family planning, sexual health education for youth, quality and affordable childcare and afterschool care, school nursing, dental care, and training for parents/parenting skills. Specific recommendations for public health funding include: o Conducting more assessments to build case for funding and demonstrate return on investment. o Increase visibility of important services, such as Medicaid, CHIP, CSHCN, Home Visiting, and many other MCH services need to be much more visible statewide. o Leverage partnerships to find innovative ways to fund programs. o Increase advocacy efforts for public health funding, specifically for MCH/CSHCN programs. o Investments into more care coordination statewide can help link people to needed CSHCN and MCH care. o Services need to be culturally and linguistically appropriate to be accessible to all, especially underrepresented minorities and families who may have mixed immigration status. o Need more OB/GYNs, Pediatricians, Psychologists, and counselors in rural areas. o More telehealth services needed in rural areas, especially for CSHCN, ABS treatment, and others. o Need more rotations of specialists to rural areas for CSHCN o Need more school nurses so school nurses can be first line of defense for youth. Nurse to student ratio is extremely low. Programs valued/wanted by participants - Based on the types of priorities described by survey participants, Table 19 lists specific health programs or services valued by participants from the MCH/CSHCN online survey (N=1,892). 66 Table 19. Priority Issues and Services of MCH/CSHCN Stakeholder Survey Participants, 2019 Domain Priority Issues – Specific to health services or topics Women/Perinatal Mental Health (perinatal depression), access to family planning, domestic violence, parenting skills, substance use, immunizations Infants Immunizations, abuse/neglect, developmental delays, environmental exposures (e.g. air quality), nutrition, breastfeeding Children Depression, abuse/neglect, parental involvement, immunizations, childcare, afterschool care, school nursing, nutrition/overweight, dental care, air quality Adolescent Depression and anxiety, suicide, sex education, drug use, vape/tobacco, social isolation, abuse/neglect, overweight, alcohol, school nursing, physical activity CSHCN Access to CSHCN services/specialty care and screening, autism services, care coordination, early intervention, parent support, mental health, developmental screening, abuse/neglect, suicide, bullying, community and recreation opportunities Strengths and Assets Strengths and assets were discussed commonly and over 100 community resources were named specifically by stakeholders, some small, some large. Quality and caring providers were lauded, there was recognition that many services are provided well despite limited resources. Rural and urban participants described a sense of community and demonstrated significant collaboration and coordination among agencies and organizations that support the public’s health and maternal and child health. Communities have found innovative ways to overcome challenges, such as transportation in rural areas, coordination for CSHCN, and addressing intergenerational poverty through coalitions. 3 Forces of Change Forces of change are identified by asking questions such as "What is occurring or might occur that affects the health of our community or the local public health system?" or "What specific threats or opportunities are generated by these occurrences?" Some forces of change are noted below. COVID-19 Pandemic The most notable force of change is the COVID-19 pandemic, which emerged in the latter part of this assessment in Spring of 2020. While consequences of this disruptive force are not fully understood, there are some emerging concerns and opportunities to consider: • • With people isolating at home, fewer women and children may be accessing well-child, prenatal visits, dental, and other preventive healthcare. With children isolated at home, not attending school, child abuse and ACEs may go undetected. 67 • • • The economic downturn caused by the pandemic will put pressure on public health programs, we anticipate a larger proportion of the population will become eligible for programs like Medicaid, Baby your Baby, WIC, and others. Multiple programs in MCH and CSHCN have experienced budget reductions and more are likely in coming months in reaction COVID-19 related economic crisis. These cuts are driven by a desire of Utah lawmakers to prioritize balancing the budget, which negatively impacts health and social services. Telehealth is becoming more accessible and reimbursable, meaning more specialty care and mental health care may be available. This is a timely opportunity, especially for rural areas. Attitudes toward Medicaid and the Affordable Care Act Efforts to repeal or dismantle the affordable care act continue at the national level and in Utah, efforts to expand Medicaid have had limited success. However, there may be growing support for access to health insurance through Medicaid and the Affordable Care Act as more jobs are lost due to the pandemic. Immigration Policy Immigration policies at the national level continue to tighten and may prevent immigrants from accessing services for which they are eligible. Racial Justice Movement Given the findings in this report about addressing social determinants of health and need to address health disparities, especially among underrepresented minorities, it is important to acknowledge the recent protests in Utah and around the country that bring attention to systemic racism. This indicates a new level of consciousness among the populace about racism and by extension provides an opportunity to broaden the discussion and momentum to better address social determinants of health. 68 6. RECOMMENDATIONS It is recommended that the Utah Department of Health use this report to guide the selection of State and National Performance Measures that will address some of the top MCH/CSHCN priorities described in this report. UDOH should continue organizing for success with its partners and formulate goals and specific objectives with key metric. While UDOH should focus on specific MCH/CSHCN priorities to make concerted progress, they should consider addressing broader issues that prevent improvement, such as the funding issue. This may require more effort in the areas of public health advocacy and policy. Partnerships could strengthen this effort. In addition to MCH/CSHCN focused SPM and NPMs, UDOH should work with partners: 1. 2. 3. 4. 5. Address social determinants of health and intergenerational poverty; Improve access to healthcare affordable health insurance; Better fund Children with Special Healthcare Needs and leverage new telehealth efforts; Address family violence, abuse, neglect and increase affordable childcare, and Work across sectors to expand needed mental health services. 69 References Charmaz, K., & Belgrave, L. (2012). Qualitative interviewing and grounded theory analysis. The SAGE handbook of interview research: The complexity of the craft, 2, 347-365. Golden, S. D., & Earp, J. A. L. (2012). Social ecological approaches to individuals and their contexts: twenty years of health education & behavior health promotion interventions. Health Education & Behavior, 39(3), 364-372. Grant, B. (2000). TITLE Understanding Title V of the Social Security Act: A Guide to the Provisions of the Federal Maternal and Child Health. Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O'Neal, L., ... & Duda, S. N. (2019). The REDCap consortium: Building an international community of software platform partners. Journal of biomedical informatics, 95, 103208. Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics, 42(2), 377-381. Grant, B. (2000). TITLE Understanding Title V of the Social Security Act: A Guide to the Provisions of the Federal Maternal and Child Health. Utah Health Status Update: Maternal and Child Health State Priorities, 2016-2020. Bureau of Maternal and Child Health, 2016. Utah Department of Health 70 71 Attachment A Utah Health Status Update: 72 Maternal and Child Health State Priorities, 2016–2020 January 2016 Introduction Enacted in 1935 as part of the federal Social Security Act, Title V is the oldest public health program in the nation and provides a foundation for ensuring the health and well-being of the nation’s pregnant women, mothers, infants, and children, including children with special health care needs (CSHCN).1 The Utah Department of Health’s Maternal and Child Health Bureau is responsible for administering the Title V Maternal and Child Health (MCH) Block Grant program in Utah. As a recipient of this grant, each state is required to conduct a needs assessment every five years to assess the needs of their MCH and CSHCN populations and to design programs that address those needs. States are also required to develop performance measures to improve accountability and to better monitor the impact of state Title V program activities. Methods The 2015 MCH needs assessment process was based on a multi-faceted approach of collect- KEY FINDINGS • The Title V program provides a foundation for ensuring the health and well-being of the nation’s pregnant women, mothers, infants, and children, including children with special health care needs. • A recent Needs Assessment Summit resulted in the final selection of 10 state Maternal and Child Health priorities as well as eight related National Performance Measures and four State Performance Measures (see Table). • State Title V partners are currently developing a five-year state action plan and strategies to address state priorities. These priorities along with performance measures will drive state and local public health work for 2016–2020. • Collaboration continues to be fundamental in Title V efforts to achieve optimal health for mothers, children, and families in Utah. ing, reviewing, and analyzing information, including both quantitative and qualitative data. The process consisted of three major components: 1) collection and review of secondary data, 2) collection of primary data from various stakeholders using surveys and focus groups, and 3) application of a nine-step needs assessment model. To assist the state MCH priority setting for the next five years, the data team prepared detailed descriptions of the newly proposed block grant performance measures along with state and national trend data related to these measures. Primary data was also collected using: a) a general stakeholder survey, b) a survey of parents and guardians of children and youth with special health care needs, c) a survey of local health departments to assess their service capacity, and d) a series of focus groups with community partners. The nine-step model guided the overall approach to the needs assessment process and included: 1) engagement of stakeholders, 2) assessment of MCH/CSHCN population needs and identification of desired outcomes and mandates, 3) examination of state strengths and capacity, 4) selection of state priorities, 5) selection of measures and setting of performance objectives, 6) development of an action plan, 7) allocation of resources, 8) monitoring of progress for impact on outcomes, and 9) reporting back to stakeholders. Following the data analysis and review, a MCH Needs Assessment Summit was held to discuss and prioritize state health needs collectively with more than 50 key stakeholders representing various community organizations and state agencies. The results of the data analyses, including the top 10 health issues for MCH/CSHCN populations, were presented to the group. Summit participants were encouraged to consider the following five criteria as they prioritized which needs could most effectively be addressed by Title V efforts: 1) data-driven - the need is supported by data, 2) feasibility/ capacity - Title V programs and local health departments have the capacity to address the need, 3) effective evidence-based intervention - the intervention has an impact on the need, 4) overlap - the selected need overlaps with or is complementary to another priority issue, and 5) resources/sustainability - the state has adequate resources to sustain efforts to meet the need. Results The Summit resulted in the final selection of 10 state MCH priorities as well as eight related National Performance Measures (NPMs) and four State Performance Measures (SPMs) [see Table]. Stakeholders played a critical role in providing their diverse perspectives on community needs and challenges and in selecting appropriate state priorities and related performance measures. The Maternal and Child Health Bureau and other Title V partners are currently developing a five-year state action plan and strategies to address state priorities. Collaboration continues to be fundamental in Title V efforts to achieve optimal health for mothers, children, and families in Utah. 1. Understanding Title V of the Social Security Act. Health Resources and Services Administration, Maternal and Child Health Bureau, 2002. U.S. Department of Health and Human Services. http://www.amchp.org/AboutTitleV/Documents/UnderstandingTitleV.pdf 73 Utah’s Maternal and Child Health Needs, Priorities, and Performance Measures Table 1. State Health Needs, Priorities, and Performance Measures, Utah, 2015 MCH Population Domain Identified Health Needs 2015 Selected State Priorities Selected Performance Measures NPMs/SPMs • Preconception and interconception care NPM 1 – Well-woman visit Percent of women with a past-year preventive medical visit Women/ Maternal Health • Adequate insurance coverage • Awareness of importance of preventive care • Depression/mental health • Diabetes prevention • Domestic violence • Family planning/unintended pregnancy • Healthy weight maintenance • Male/father involvement • Prenatal care/multivitamin use • Substance abuse • Breastfeeding promotion NPM 3 – Perinatal regionalization Percent of very low birth weight (VLBW) infants born in a hospital with a Level III+ Neonatal Intensive Care Unit (NICU) Perinatal/ Infant Health • Adequate insurance coverage • Developmental delays • Immunizations • Injury prevention • Lack of quality child care • Low breastfeeding prevalence/poor infant nutrition • Parenting knowledge • Premature/low-birth-weight babies • Safe sleep • Violence/abuse/neglect • Developmental screening Child Health • Adequate insurance coverage • Developmental delays • Immunizations • Injury prevention • Lack of quality child care/after-school supervision • Maintenance of healthy weight/physical activity • Mental health • Oral health • Violence/abuse/neglect/bullying Adolescent Health • Adequate insurance coverage • Comprehensive sexual health education/sexuallytransmitted infections • Depression/mental health/suicide • Immunizations • Injury prevention • Lack of after-school supervision • Maintenance of healthy weight/physical activity • Substance abuse • Teen pregnancy/access to contraceptives • Violence/abuse/neglect/bullying • Prevention of unhealthy weight (overweight/obese) among children and adolescents NPM 8 – Adolescent physical activity A - Percent of adolescents ages 12 through 17 who are physically active at least 60 minutes per day B - Percent of adolescents in grades 9 through 12 who report being physically active at least 60 minutes per day in the past week • Suicide, mental health issues, and access to mental health services SPM 4—Adolescent suicide The rate (per 100,000) of suicide deaths among youths aged 15–19 • -Out-of-pocket costs/ financial challenges faced by CSHCN parents NPM 11 – Medical home Percent of children with special health care needs having a medical home Children with Special Health Care Needs (CSHCN) • Adequate insurance coverage • Availability of specialized services • Cost of care/financial stability • Income-based eligibility/waiting list for public programs • Lack of support for rural families • Medical home/service coordination • Recreational/social activities • Relevant community services and resources • Respite care • Transition to adulthood • Adequate insurance coverage Cross-Cutting/ Life Course • Adequate insurance coverage • Cost of care/financial stability • Family planning/unintended pregnancy • Immunizations • Lack of support for rural families • Maintenance of healthy weight • Medical home/service coordination • Mental health • Substance abuse • Violence For additional information about this topic, contact Shaheen Hossain PhD, Utah Department of Health, (801) 2732855, email: [e-mail]; or the Office of Public Health Assessment, Utah Department of Health, [phone], email: [e-mail]. • Preterm and low-birthweight babies/NICU NPM 4 – Breastfeeding A - Percent of infants who are ever breastfed B - Percent of infants breastfed exclusively through 6 months SPM 1—Preterm births Percent of live births occurring before 37 completed weeks of gestation NPM 6 – Developmental screening Percent of children, ages 10–71 months, receiving a developmental screening using a parent-completed screening tool • Injury and injuryrelated deaths • Specialty service availability in rural areas and improved care coordination for children with special needs SPM 3—Child injury deaths The rate (per 100,000) of injury deaths among children aged 1–19 NPM 12 – Transition Percent of adolescents with special health care needs who received services necessary to make transitions to adult health care SPM 2—CSHCN rural clinical services Percent of children with special health care needs in the rural areas of the state receiving direct clinical services through the state CSHCN program NPM 13 – Oral health A - Percent of women who had a dental visit during pregnancy B - Percent of children, ages 1 through 17, who had a preventive dental visit in the past year UDOH ANNOUNCEMENT: Timely Reporting of Infectious Diseases - New Weekly Report Starting in 2015, UDOH began releasing a weekly report summarizing case counts and trends of the most frequently reported communicable diseases. To view reports for communicable diseases, including the new Weekly Communicable Disease report, please visit http://health.utah.gov/epi/data/. Spotlights for January 2016 74 Breaking News, January 2016 Parkinson’s Disease Registry Launched Parkinson’s Disease (PD) is a chronic and progressive movement disorder that is due to the malfunction and death of vital nerve cells in the brain. Approximately 60,000 Americans are diagnosed with PD each year, and as the population ages, this number is expected to increase. In Utah, PD has increased by 30 percent over the last ten years. On March 12, 2015, the Utah Department of Health (UDOH) implemented a rule to make PD a reportable condition and create a registry of these patients. The computerized PD registry was developed through a collaboration between the University of Utah and the UDOH with support from the Utah Center for Clinical and Translational Science and the Utah State Legislature. The data from the registry will be used by researchers and others to better Dr. Stefan Pulst, Professor and Chair of the Department of Neurology at the of Utah, and supporters of the registry at the official launching of the understand the causes of the disease and find ways to University registry on May 21, 2015. improve patient outcomes. Utah is one of only a few states (others include Washington and Nebraska) to develop a PD registry; the website is www.updr.org. As of December 31, 2015, 908 PD patients have been registered. Community Health Indicators Spotlight, January 2016 Percentage of Students (Grades 8, 10, 12) Youth Use of Electronic Cigarettes Is Increasing Significantly in Most of Utah’s Local Health Districts Electronic cigarettes (or vape products) are battery-powered devices that typically deliver nicotine in the form of an aerosol. Nicotine use during adolescence affects brain development and can impact attention, learning, and susceptibility to other addictions.1 Whereas adult use of electronic cigarettes Percentage of Utah Students (Grades 8, 10, 12) Who Used has leveled off at 4.8% (Utah BRFSS, 2013 and 2014), Electronic Cigarettes in the Past 30 Days by Local Health electronic cigarette use among Utah youth contin- District, 2013 and 2015 ues to increase at alarming rates. Central, Salt Lake 25% County, Southeast, Southwest, Tooele, TriCounty, and 2013 2015 Utah County Health Districts experienced significant 20% increases from 2013 to 2015. In 2015, youth use of electronic cigarettes was highest in districts with high adult smoking rates. Two districts that adopted policies 15% to regulate youth access to electronic cigarettes in 2014 (Davis, Weber-Morgan) reported small declines in 10% youth use rates. To prevent nicotine addiction among youth, additional regulatory measures are needed. Price increases through tobacco excise taxes and strict 5% enforcement of laws that prohibit access to tobacco products have been shown to be effective in reducing 0% youth tobacco use. Bear Salt South- SouthTriUtah Was- WeberState Central Davis Summit Tooele River 1. England, L. et al. Nicotine and the Developing Human: A Neglected Element of the E-cigarette Debate. American Journal of Preventive Medicine Volume 49, Issue 2, August 2015, pp. 286–293. 2013 5.8% 2015 10.5% 5.2% 7.4% 1.7% 10.0% 8.9% 8.4% Lake east west 5.8% 12.3% 3.3% 12.9% 3.3% 11.2% 4.1% 9.3% 5.9% 13.4% County County atch Morgan 3.7% 14.5% 4.5% 7.5% 20.2% 15.0% 1.7% 7.6% Source: Tobacco Prevention and Control Program. Prevention Needs Assessment (PNA) Survey. 2013, 2015. Salt Lake City: Utah Department of Health. Monthly Health Indicators Report (0.6) (1.4) (1.9) (0.3) (0.4) (4.3) (3.8) 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 2014 Percent/ Rate 524,000 25.7% 197,800 9.7% 171,300 58.0% 303,100 10.3% 234 8.0 / 100,000 641 21.8 / 100,000 555 18.9 / 100,000 144,800 7.1% 324,200 15.9% 1,574 53.5 / 100,000 3,033 103.1 / 100,000 854 29.0 / 100,000 537 7.9 / 1,000 39,005 76.2% 251 4.9 / 1,000 36,700 74.6% 1 Year Ago % Change‡ From Previous Year % Change‡ From Previous Year -2.8% -2.5% -1.5% +7.3% Total Charges in Millions % Change‡ From Previous Month Previous Month Rate per 100 Population 9.0% 5.6% 22.3% 13.1% 276,963 +4.4% 20,147 -33.1% 14,825 +11.1% Annual Charges $ 6,513.8 $ 5,554.8 $ 1,555.4 $ 2,167.9 +5.9% +6.6% +7.1% +11.5% State Rank§ (1 is best) $ $ $ $ $ $ $ Annual Community Health Measures Obesity (Adults 18+) Cigarette Smoking (Adults 18+) Influenza Immunization (Adults 65+) Health Insurance Coverage (Uninsured) Motor Vehicle Traffic Crash Injury Deaths Poisoning Deaths Suicide Deaths Diabetes Prevalence (Adults 18+) Poor Mental Health (Adults 18+) Coronary Heart Disease Deaths All Cancer Deaths Stroke Deaths Births to Adolescents (Ages 15-17) Early Prenatal Care Infant Mortality Childhood Immunization (4:3:1:3:3:1) 279,393 177,191 683,415 404,303 -0.5% +5.7% +0.0% % Change‡ From Previous Year $ 70.9 $ 71.5 $ 43.4 $ 44.7 $ 16.9 $ 18.7 $ 77.9 $ 78.2 $ 43.0 $ 43.4 $ 16.2 $ 20.5 $ 1,004.6 $ 1,008.4 1.1 1.2 2.2 1.1 1.2 Variance over (under) budget 80 5,548 491 38 24 Health Care System Measures Overall Hospitalizations (2013) Non-maternity Hospitalizations (2013) Emergency Department Encounters (2013) Outpatient Surgery (2013) Number Affected 1.4 0.9 0.6 YTD Standard Morbidity Ratio (obs/exp) # Expected YTD (5-yr average) $ 12.2 $ 12.0 $ 4.2 $ 19.2 $ 3.1 $ 4.1 $ 165.7 91 6,409 1,089 42 28 308 38 279 Budgeted Fiscal YTD $ 12.4 $ 11.8 $ 4.7 $ 20.2 $ 3.5 $ 3.5 $ 166.8 # Cases YTD 23 1,885 198 13 7 434 34 165 Fiscal YTD Current Quarter # Expected Cases (5-yr average) 35 2,195 413 19 15 Expected/ Budgeted for Month Medicaid Expenditures (in Millions) for the Month of November 2015 Capitated Mental Health Inpatient Hospital Outpatient Hospital Long Term Care Pharmacy Physician/Osteo Services TOTAL MEDICAID 22 3 29 Current Quarter # Cases Quarterly Report of Notifiable Diseases, 3rd Qtr 2015 HIV/AIDS† Chlamydia Gonorrhea Syphilis Tuberculosis 30 5 9 Current Month Salmonellosis (Salmonella) Shigellosis (Shigella) Varicella (Chickenpox) Current Month 0.9 290,639 12,745 16,469 Annual Visits Number of Events 468 Shiga toxin-producing Escherichia coli (E. coli) 3 5 92 98 0.9 Hepatitis A (infectious hepatitis) 1 1 7 8 0.9 Hepatitis B, acute infections (serum hepatitis) 0 1 9 9 1.0 Influenza* Weekly updates at http://health.utah.gov/epi/diseases/influenza Meningococcal Disease 0 0 1 5 0.2 Pertussis (Whooping Cough) 13 79 404 898 0.4 Current Data Year 398 YTD Standard Morbidity Ratio (obs/exp) 30 # Expected YTD (5-yr average) 20 # Cases YTD Current Month # Expected Cases (5-yr average) Campylobacteriosis (Campylobacter) Current Month # Cases Monthly Report of Notifiable Diseases, November 2015 Program Enrollment for the Month of November 2015 Medicaid 289,160 PCN (Primary Care Network) 13,477 CHIP (Children’s Health Ins. Plan) 16,477 % Change‡ From 1 Year Ago 75 (Data Through November 2015) +6.5% -6.1% +1.0% -11.2% +20.2% +0.4% -4.0% -0.1% -3.0% +2.5% +1.0% +1.4% -8.8% -0.2% -4.7% n/a# 8 (2014) 1 (2014) 36 (2014) n/a 9 (2013) 47 (2013) 49 (2013) 8 (2014) 19 (2014) 1 (2013) 1 (2013) 18 (2013) 11 (2013) n/a 9 (2012) 24 (2014) * Influenza activity is minimal in Utah. Influenza-like illness activity is below baseline statewide. As of December 12, 2015, 21 influenza-associated hospitalizations have been reported to the UDOH since the start of the influenza season on October 4, 2015. More information can be found at http://health.utah.gov/epi/diseases/influenza/index.html. † Diagnosed HIV infections, regardless of AIDS diagnosis. ‡ Relative percent change. Percent change could be due to random variation. § State rank based on age-adjusted rates where applicable. # In 2014, NIS analysis for the complete 4:3:1:3:3:1 series was updated to provide a more accurate assessment of Haemophilus influenzae type B vaccination. Due to this change, the 2014 results for 4:3:1:3:3:1 coverage are not comparable to prior years. Notes: Data for notifiable diseases are preliminary and subject to change upon the completion of ongoing disease investigations. Active surveillance for West Nile Virus will start in June for the 2016 season. 76 Attachment B 77 MATERNAL, INFANT & CHILD HEALTH INDICATORS IN UTAH A Publication of the Utah Department of Health, Data Resources Program, Maternal Child Health Bureau 2019 ---  Life expectancy for females, age in year1,22 81.8 81.1 --- 80.0 80.6 83.1 Data Year 76.1 Hispanic / Latino HP2020 Goal 78.0 2017 Utah Population1 Other, Non-Hispanic U.S.  Life expectancy for males, age in years1,22 UTAH DEMOGRAPHICS White, Non-Hispanic Utah 78 3,101,833 Life Expectancy at Birth Ʉ Ʉ Age Group  Percent of population under the age of 10 years1 (n = 514,380) 16.4% 12.2% --- 73.6% 8.9% 17.6% 2017  Percent of population who are 10 to 19 years 1 (n = 504,304) 16.4% 13.1% --- 73.7% 8.5% 17.8% 2017  Percent of population who are 20 to 34 years1 (n = 711,099) 22.9% 20.5% --- 75.8% 9.7% 14.6% 2017  Percent of population who are 35 to 44 years 1 (n = 422,547) 13.7% 12.7% --- 77.9% 7.2% 14.9% 2017  Percent of population who are 45 to 59 years1 (n = 472,210) 15.1% 19.7% --- 80.7% 6.5% 12.8% 2017  Percent of population who are 60 or older (n = 477,293) 15.5% 21.8% --- 89.5% 4.5% 6.1% 2017 85.7% 72.3% --- --- --- --- 2017 1.2% 12.7% --- --- --- --- 2017 1.1% 0.8% --- --- --- --- 2017 2.4% 5.6% --- --- --- --- 2017  Percent of population who are Native Hawaiian or Pacific Islander 1 0.9% 0.2% --- --- --- --- 2017  Percent of population who are two or more races 3.0% 3.3% --- --- --- --- 2017 1 Race  Percent of population who are white1  Percent of population who are black1  Percent of population who are American Indian 1  Percent of population who are Asian1 1 Ʉ UT 2017: 5-year estimate for ethnicity (2013 - 2017); US 2016 2 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 79  Percent of population who are males1 50.3% 49.2% --- 78.0% 7.7% 14.3% 2017  Percent of population who are females1 49.7% 50.8% --- 78.5% 7.8% 13.8% 2017  Percent of adults, ages 25 and over, with less than a high school education1 7.9% 12.0% --- 46.4% 9.2% 44.4% 2017  Percent of adults, ages 25 and over, who completed high school 22.0% 27.1% --- 78.2% 6.1% 15.7% 2017  Percent of adults, ages 25 and over, who completed some college or an associate’s degree1 35.8% 28.9% --- 85.6% 6.0% 8.4% 2017  Percent of adults. ages 25 and over, with a college degree 22.2% 19.7% --- 87.1% 7.4% 5.5% 2017 12.0% 12.3% --- 88.2% 7.6% 4.2% 2017 83.8% 78.5% --- 90.7% 4.6% 4.6% 2017 16.2% 21.5% --- 25.4% 20.9% 53.7% 2017 9.6% 14.6% --- 22.8% 26.1% 51.1% 2017 74.4% 65.5% --- --- --- --- 2017 13.4% 17.3% --- --- --- --- 2017 66.3% 59.9% --- 79.8% 7.0% 13.2% 2017 UTAH DEMOGRAPHICS Gender Education 1 1  Percent of adults, ages 25 and over, with a postgraduate or professional degree 1 Primary Language Spoken at Home  Percent of adults, ages 18 and over, whose primary language is English 1  Percent of adults, ages 18 and over, whose primary language is a language other than English 1 Foreign Born  Percent of the population who were not born in the United States1 Household Type  Percent of households that are families1  Percent of households where adults are single with children 1 Employment Status  Percent of adults, ages 16 and over, who are employed 1 3 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 80 14.7% 13.9% 0.0% 9.3% 17.7% 41.0% Ʉ 87.1% 81.3% 100.0% 90.6% 89.8%* 65.5% Ʌ 4.7% 2.9% --- 2.6% ** 18.2% Ʌ  Percent of women who reported having a preventive dental visit during pregnancy 3 52.3% 48.3% --- 64.4% ** 47.3% Ʌ  Percent of women reproductive age who reported having a preventive medical visit within the last year2a 54.6% 67.4% --- 54.2% 62.4% 53.3% Ʉ  Percent of women who reported having a postpartum check-up for themselves3 90.3% 89.7% 90.8% 92.0% 91.2* 81.0% Ʌ  Percent of women who reported not being on birth control prior to pregnancy 3 48.0% --- --- 47.8% 52.1% 62.9% 2015  Percent of women who reported their pregnancy as unintended 20.3% 34.2% 44.0% 16.7% 36.8% 30.0% Ʌ  Percent of women who reported having a preconception visit during the 12 months prior to pregnancy3 20.7% 22.8% 27.0% 20.6% 19.5% 15.3% 2015  Percent of women who reported taking a multivitamin 7 days a week during the month before pregnancy3 37.4% 38.7% 33.3% 50.0% 43.9% 41.3% Ʌ 77.0% 75.3% 77.9% 83.2% 73.4% 68.0% 2017 4.1% --- --- 3.2% 8.6% 5.5% 2017  Percent of women who became pregnant within 15 months of their last birth 5 23.6% --- --- 24.0% 2.7% 20.4% 2017  Percent of women who became pregnant within 18 months of their last birth 31.0% 29.0% 29.8% 32.1% 3.3% 25.1% ɸ 86.1% 78.4% 58.5% 87.6% 70.0% 85.3% Ʌ MATERNAL HEALTH Healthcare Access and Utilization  Percent of women of reproductive age who reported being uninsured 2a  Percent of women who reported having health insurance prior to pregnancy 3  Percent of women who reported having not having health insurance to pay for prenatal care 3 Family Planning 3 Pregnancy Related Issues  Percent of women who received prenatal care during their first trimester 4b  Percent of women who became pregnant within 6 months of their last birth 5 5, 6  Percent of women who reported using contraception postpartum3 Ʉ UT 2017; US 2016 Ʌ UT 2016; US 2015 4 ɸ UT 2017; US 2011-2015 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 81  Percent of Cesarean Section deliveries among all live births4bi 22.7% 32.0% --- 21.8% 28.4% 24.2% 2017  Percent of Primary Cesarean Section deliveries among live births from women without a previous Cesarean delivery4bii 13.4% 21.9% --- 12.9% 18.3% 13.5% 2017  Percent of Primary Cesarean Section deliveries among low-risk women without a previous Cesarean delivery4biii 16.8% 25.7% 23.9% 15.9% 21.9% 18.9% 2016  Percent of Repeat Cesarean Section deliveries among live births from women with a previous Cesarean delivery4biv 77.5% 87.2% --- 77.3% 79.0% 77.6% 2017  Percent of Repeat Cesarean Section deliveries among low-risk women with a previous Cesarean delivery4bv 74.9% 90.8% 82.0% --- --- --- Ш  Percent of Vaginal Births after Cesarean (VBAC) deliveries among live births from women with a previous Cesarean delivery4bvi 22.5% 12.8% --- 22.7% 21.0% 22.5% 2017  Percent of women of reproductive age who reported being obese 2a 21.1% --- 30.5% 19.7% 12.6% 32.8% 2017  Percent of women who reported that she exercised prior to pregnancy3 58.9% 34.2% --- 61.0% 51.7% 50.3% 2015  Percent of women with a normal BMI prior to pregnancy 50.6% 47.7% 57.8% 53.3% 46.2% 41.3% Ψ 7.1% 7.3% --- 6.0% 11.2% 10.0% 2017 31.1% --- --- 30.9% 28.4% 31.4% 2017 MATERNAL HEALTH Delivery Method Health Status 2a, 3  Percent of women with Gestational Diabetes or pre-existing 4b  Percent of women with adequate weight gain during pregnancy Ш UT 2017; US 2007 5a Ψ UT 2017; US 2015 5 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 82  Percent of women who reported being told by a provide that she had anxiety prior to pregnancy 3 22.3% --- --- 23.9% 22.9% 15.3% 2016  Percent of women who reported being told by a provider that she had depression prior to pregnancy3 14.4% 10.5% --- 15.6% 15.5%* 10.1% Ʌ  Percent of women who reported postpartum depression 3a 14.7% 12.8% --- 14.9% 21.9% 12.0% Ʌ 1.4% 2.3% --- 1.0%* ** ** Ʌ 1.2% 2.1% --- 0.8%* ** 1.3%* Ʌ 24.4% --- --- 22.9% 39.4% 26.9% 2016  Percent of women who reported trauma related stress during pregnancy 3e 12.0% --- --- 12.0% 12.4%* 10.3% 2016  Percent of women who reported emotional stress during pregnancy 26.9% --- --- 27.9% 30.2% 22.8% 2016 44.1% --- --- 43.3% 44.8% 50.3% 2016  Percent of women who reported drinking alcohol in the three months prior to pregnancy 3 28.1% 55.3% 44.6% 26.2% 27.4% 34.2% 2015  Percent of women who reported drinking in the last three months of pregnancy 2.6% 8.0% 1.7% 2.6% ** 3.5%* 2015 6.6% --- 12.0% 6.3% 9.3%* 6.6% 2017 9.7% 34.2% 12.2% 9.3% 15.1%* 7.9% Ʌ 4.5% 6.9% 1.4% 4.8% 4.4% 3.2% 2017 3.5% 8.8% 1.4% 3.7% ** 3.1%* Ʌ 5.5% 12.6% 38.2% 5.7% 7.1%* 3.4%* Ʌ MATERNAL HEALTH Stress, Anxiety, and Mental Health Issues  Percent of women who reported physical abuse prior to pregnancy 3b  Percent of women who reported physical abuse during pregnancy 3c  Percent of women who reported partner associated stress during pregnancy 3d 3f  Percent of women who reported financial stress during pregnancy 3g Substance Use 3  Percent of women of reproductive age who reported smoking cigarettes2  Percent of women who reported smoking cigarettes in the three months prior to pregnancy  Percent of women who reported using tobacco use during pregnancy 4b, 5  Percent of women who reported tobacco use during last three months of pregnancy  Percent of women who reported any cigarette smoking postpartum 3 3 Ʌ UT 2016; US 2015 6 3 U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year MATERNAL HEALTH Utah 83 45.0 143.9 --- --- --- --- 2014 25.7 18.0 11.4 --- --- --- Ω Hospitalizations  Severe maternal morbidity rate, per 10,000 delivery hospitalizations7 Maternal Mortality  Maternal mortality rate, per 100,000 live births4, 5 Ω UT 2016; US 2014 --- Data not available *Estimate is unreliable and should be interpreted with caution **Indicator is not reportable due to a very small number of observed events 7 Data Year 2.1% 1.2% 2017 0.9% 1.2% 1.1% 2017 6.8% 7.0% 8.4% 7.5% 2017 9.9% 9.4% 9.5% 10.9% 10.9% 2017 27.9% 26.0% --- 26.1% 29.2% 30.9% 2017  Percent of very low birth weight births (< 1,500 grams)4 1.2% 1.4% 1.4% 1.1% 2.0% 1.2% 2017  Percent of low birth weight births (< 2,500 grams)4 7.2% 8.3% 7.8% 6.9% 9.7% 7.5% 2017  Percent of infants whose mother reported their infant being in an intensive care unit (ICU) at birth 3 13.0% --- --- 12.1% 12.1%* 17.4% 2016  Percent of infants whose mother reported their infant spending 3 - 5 nights in the hospital after birth3 21.2% --- --- 19.6% 22.5% 30.0% 2016  Percent of infants whose mother reported their infant spending 6 -14 nights in the hospital after birth3 4.1% --- --- 3.9% ** 6.1%* 2016  Percent of infants whose mother reported their infant spending more than 14 nights in the hospital after birth3 3.0% --- --- 3.0% 3.6% 2.9% 2016  Neonatal Abstinence Syndrome hospitalization rate, per 1,000 birth hospitalizations 7 5.5 6.1 --- --- --- --- 2015 HP2020 Goal 2017 U.S. 17.9 Utah Hispanic / Latino Other, Non-Hispanic White, Non-Hispanic 84 15.7 11.8 --- 1.2% 1.4% 1.5% 1.2% 1.0% 1.2% 1.1% 7.1% 7.2%  Percent of live births that were preterm (< 37 weeks)4 9.4%  Percent of early term births (37 - 38 weeks) INFANT HEALTH Birth Rates  Birth rate, per 1,000 residents4, 5 15.1 Preterm Birth  Percent of very preterm births (< 32 weeks)4  Percent of live births at 32 - 33 weeks4  Percent of live births that were late preterm (34 - 36 weeks) 4 4 Birth Weight Hospitalizations 8 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 85  Percent of newborns who had Newborn Hearing Screening by 1 month 8, 9 97.1% 93.0% 90.2% --- --- --- 2015  Percent of infants who had Hearing Screening no later than 3 months of age following a failed hearing screening8, 9 58.8% 72.0% 72.6% --- --- --- 2015  Percent of infants with confirmed hearing loss enrolled in Early Intervention before 6 months of age8, 9 59.0% 53.0% 55.0% --- --- --- 2015  Percent of infants who received newborn blood-spot screening and follow-up testing within the recommended time period (Newborn Heelstick Bloodspot Screen timeliness) 10 99.4% --- --- --- --- --- 2017 47.7% 57.9% 70.0% 47.7% ** 54.2% 2017 88.4% 82.5% 81.9% 90.0% ** 86.7% 2014 ∆ 55.5% 46.6% 46.2% 46.9% ** 47.5% 2014 ∆ 65.5% 57.6% 60.6% 64.8% ** 61.3% 2014 ∆ 26.8% 24.9% 25.5% 18.3% ** 20.9% 2014 ∆ 44.4% 33.7% 34.1% 37.5% ** 41.0% 2014 ∆ 85.9% 78.4% 75.8% 88.0% 73.3% 80.2% § INFANT HEALTH Infant Screening Immunizations  Percent of children and adolescents, ages 6 months - 17 years, who are vaccinated annually against Seasonal Influenza11 Breastfeeding  Percent of infants who were ever breastfed 11  Percent of infants who were exclusively breastfed through 3 months 11  Percent of infants who were breastfed at 6 months11  Percent of infants who were exclusively breastfed through 6 months  Percent of infants who were breastfed at 1 year 11 11 Safe Sleep  Percent of infants whose mother reported putting their infant to sleep on their back 3 ∆ 3-year estimate for ethnicity (2009 - 2011) § UT 2016; US 2015 9 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 86  Fetal mortality rate (> 20 weeks of gestation), per 1,000 live births and fetal deaths 4a, 5 5.1 5.9 5.6 5.2 5.2 5.4 ¤  Perinatal Mortality rate (28 weeks of gestation - < 7 days after birth), per 1,000 live births and fetal deaths4 5.3 6.0 5.9 5.4 ** 6.0 2015 ₳  Neonatal mortality rate (within the first 28 days of life), per 1,000 live births 5, 12 4.1 3.9 4.1 3.6 5.1* 5.2 2016  Postnatal mortality rate (28 Days - 1 Year), per 1,000 live births 1.4 2.0 2.0 1.4 2.3 1.2 2016 ₳  Infant mortality rate (within the first year of life), per 1,000 live births5, 12 5.4 5.9 6.0 4.9 7.4 6.0 2016  Preterm—related mortality rate, per 100,000 live births 141.8 207.7 --- 133.8 ** 214.2 2015 ₳ 0.3* 0.4 0.5 0.4 0.9* ** 2016 Ʊ 0.5 0.9 0.8 0.7 1.4 0.3* 2016 Ʊ 1.6 1.3 1.3 1.4 1.6* 1.6 2016 ₳ INFANT HEALTH Mortality 5, 12 4  Sudden Infant Death Syndrome rate, per 1,000 live births 12a  Sleep-related Sudden Unexpected Infant death rate, per 1,000 live births  Infant mortality associated with birth defects rate, per 1,000 live births 12b 12c § UT 2016; US 2015 ¤ UT 2017; US 2015 ₳ 3-year estimate for ethnicity Ʊ 5-year estimate for ethnicity --- Data not available *Estimate is unreliable and should be interpreted with caution **Indicator is not reportable due to a very small number of observed events 10 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 87 6.1% 4.7% 0.0% --- --- --- 2016  Percent of children and adolescents who are continuously and adequately insured, ages 0 - 17 61.1% 69.5% 100% 63.8% ** 48.3%* 2016  Percent of children and adolescents without special health care needs who have a medical home, ages 0 - 1714a 58.7% 50.0% 63.3% 62.1% 55.7%* 46.2%* 2016  Percent of children and adolescents who were not able to obtain needed health care in the last year, ages 0 - 1714 2.8% 3.0% 4.2% 2.5% ** 3.4%* 2016  Percent children and adolescents who had a preventive medical visit in the past year, ages 0 - 1714 79.7% 82.3% --- 80.0% 86.4% 76.9% 2016  Percent of children and adolescents with a mental/behavioral condition who receive treatment or counseling , ages 3 - 1714 50.0% 52.8% 75.8% 47.2%* ** ** 2016  Percent of children and adolescents who are vaccinated annually against seasonal influenza, ages 6 months - 17 years11 47.4% 57.9% 70.0% 47.7% ** 54.2% 2017  Percent of children who have completed the combined 7-vaccine series (4:3:1:3*:3:1:4), ages 19 35 months11 67.9% 70.4% 80.0% 69.3% ** 73.1% 2017  Percent of children and adolescents, ages 0 through 17, in excellent or very good health 14 92.7% 89.7% --- 93.7% ** 91.0% 2016  Percent of children who are physically active at least 60 minutes per day, ages 6 - 1114 21.9% 29.8% --- 24.8% ** 15.6%* 2016  Percent of children who are obese, ages 2 - 4 8.2% 14.6% 9.4% 4.7% 10.6%* 11.6% 2014 CHILD HEALTH Healthcare Access and Utilization  Percent of children and adolescents who are uninsured, ages 0- 172, 13 14 Vaccinations Health Status 15 11 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 88  Percent of children and adolescents who had a preventive dental visit in the past year, ages 1 - 1714 80.1% 78.7% 49.0% 82.4% ** 74.1%* 2016  Percent of children and adolescents who have decayed teeth or cavities in the past 12 months, ages 1 - 1714 12.3% 11.7% --- 12.4% ** 14.1% 2016  Percent of children who have untreated dental caries, ages 6 - 916, 17 19.1% 16.2% 25.9% --- --- --- Ϫ  Percent of children who have received dental sealants on one or more of their permanent molar teeth, ages 6 - 916,17 44.9% 40.7% 28.1% --- --- --- Ϫ 65.5% 51.7% 49.0% --- --- --- Ϫ  Percent of children and adolescents with asthma, ages 0 - 172 5.8% 7.9% --- 6.5% 5.6%* 6.1% 2016  Percent of children and adolescents who live in households where someone smokes, ages 0 -1715 8.6% 16.2% 13.0% 6.8% ** 14.2% 2016  Asthma-related Emergency Department visit rate, children less than 5 years of age, per 10,000 children less than 5 years of age18, 19 37.3 129.6 95.7 --- --- --- Ж  Asthma hospitalization rate, children less than 5 years of age, per 10,000 children less than five years of age20, 21 13.7 40.6 18.2 --- --- --- Ħ  Nonfatal injury hospitalization rate, children ages 0 - 9, per 100,000 population7, 20 120.6 146.0 555.8 --- --- --- 2014  Child mortality rate, ages 1 - 4, per 100,000 population 5, 22 21.1 24.5 26.5 23.2 31.1* 16.2* 2017 ฿  Child mortality rate, ages 5 - 9, per 100,000 population 5, 22 10.4 11.6 12.4 10.7 ** 8.6* 2017 ฿ 16.5 18.0 --- 16.8 ** 12.5 2016 ฿ CHILD HEALTH Oral Health Status  Percent of children with dental caries experience in their primary and permanent teeth, ages 6 - 916, 17 Respiratory Health Injury and Mortality  Child mortality rate, ages 1 - 9, per 100,000 population4 Ϫ UT 2015; US 2013-2014 Ж UT 2014; US 2013-2015 ฿ 3-year estimate for ethnicity Ħ UT 2014; US 2009 12 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 89  Percent of children and adolescents who are uninsured, ages 0-172, 13 6.1% 4.7% 0.0% --- --- --- 2016  Percent of children and adolescents who are continuously and adequately insured, ages 0 - 1714 61.1% 69.5% 100.0% 63.8% ** 48.3%* 2016  Percent of children and adolescents without special health care needs who have a medical home, ages 0 - 1714a 58.7% 50.0% 63.3% 62.1% 55.7%* 46.2%* 2016  Percent of children and adolescents who were not able to obtain needed health care in the last year, ages 0 - 1714 2.8% 3.0% 4.2% 2.5% ** 3.4%* 2016  Percent of adolescents who had a preventive medical visit in the past year, ages 12 - 1714 79.7% 82.3% --- 80.0% 86.4% 76.9% 2016  Percent of children and adolescents with a mental/behavioral condition who receive treatment or counseling, ages 3 - 1714 50.0% 52.8% 75.8% 47.2%* ** ** 2016  Percent of children and adolescents who are vaccinated annually against seasonal influenza, ages 6 months - 17 years11 47.4% 57.9% 70.0% 47.7% ** 54.2% 2017  Percent of adolescents who have received at least one dose of the meningococcal conjugate vaccine, ages 13 - 1711 85.1% 85.1% 80.0% 86.8% ** 83.1% 2017  Percent of adolescents who have received at least one dose of the Tdap vaccine, ages 13 - 1711 91.6% 88.7% 80.0% 92.4% ** 88.1% 2017  Percent of female adolescents who have received at least one dose of the HPV vaccine, ages 13 1711 63.1% 68.8% 80.0% 62.7% ** 72.3% 2017  Percent of male adolescents who have received at least one dose of the HPV vaccine, ages 13 - 1711 54.7% 62.6% 80.0% ** ** 52.7% 2017 ADOLESCENT HEALTH Healthcare Access and Utilization Vaccinations 13 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 90  Percent of children and adolescents in excellent or very good health, ages 0 - 1714 92.7% 89.7% --- 93.7% ** 91.0% 2016  Percent of adolescents who reported being physically active at least 60 minutes per day, ages 12 1723 19.1% 26.1% --- 19.3% 20.5% 17.1% 2017  Percent of adolescents who reported not eating vegetables 23a 5.0% 7.2% --- 3.7% ** 9.1% 2017  Percent of adolescents who reported not eating fruit or drink 100% fruit juices 23b 5.6% 5.6% --- 5.6% ** 4.5% 2017  Percent of adolescents who reported not drinking milk 16.6% 26.7% --- 15.5% ** 19.0% 2017  Percent of adolescents who reported drinking a soda one or more times per day 23 14.7% 18.7% --- 14.8% ** 14.7% 2017  Percent of adolescents who reported not eating breakfast 7 days a week 70.2% 64.7% --- 67.6% ** 81.0% 2017 13.2% 15.6% --- 11.9% 13.0% 19.3% 2017 9.6% 14.8% 16.1% 8.0% 16.4% 14.2% 2017  Percent of children and adolescents who had a preventive dental visit in the past year, ages 1 - 1714 80.1% 78.7% 49.0% 82.4% ** 74.1%* 2016  Percent of children and adolescents who have decayed teeth or cavities in the past 12 months, ages 1 - 1714 12.3% 11.7% 15.3% 12.4% ** 14.1%* 2016 ADOLESCENT HEALTH Health Status 23c  Percent of adolescents who reported being overweight 23 23  Percent of adolescents who reported being obese23 Oral Health Status STI and Sexual Risk Behavior  Adolescent female Chlamydia rate, ages 15 - 19, per 100,00024 1651.5 3070.9 --- 1251.6 2585.6 2874.7 2016  Teen birth rate, ages 15 - 17, per 1,000 female population 4b, 5 5.8 12.6 36.2 3.7 14.8 6.0 2017  Teen birth rate, ages 18 - 19, per 1,000 female population 4b, 5 30.0 37.8 104.6 22.2 63.5 33.0 2017 14 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 91  Percent of adolescents who reported being bullied on school property 23 19.4% 19.0% 17.9% 19.2% ** 21.0% 2017  Percent of adolescents who reported being electronically bullied 18.0% 14.9% 17.9% 20.5% ** 17.3% 2017  Percent of adolescents who reported feeling sad or hopeless (almost every day for 2 weeks or more in a row so that they stopped doing some usual activities) 23 33.0% 31.5% --- 31.7% 33.5% 4.2% 2017  Percent of adolescents who reported making a plan about how they would attempt suicide 23 17.1% 13.6% --- 16.2% 17.9% 21.1% 2017  Percent of adolescents who reported attempting suicide23 9.6% 7.4% 1.7% 7.9% 16.8% 13.6% 2017  Percent of children and adolescents who live in households where someone smokes, ages 0 - 1714 8.6% 16.2% 13.0% 6.8% ** 14.2% 2016  Percent of adolescents who reported that they had ever smoked a cigarette (even one or two puffs23 16.7% 28.8% 4.3% 14.2% 20.8% 26.2% 2017  Percent of adolescents who reported that they smoked their first cigarette before age 13 years (even one or two puffs)23 10.0% 9.5% --- 8.2%* 15.4%* 15.1% 2017  Percent of adolescents who reported that they currently smoked cigarettes 23 3.8% 8.8% 16.0% 3.5% 4.2%* 4.3%* 2017 33.9% 42.2% --- 29.2% 35.2% 55.5% 2017  Percent of adolescents who reported that they currently use an electronic vapor product (including e-cigarettes, e-cigars, e-pipes, vape pipes, vaping pens, e-hookahs, and hookah pens) 23d 7.6% 13.2% 21.0% 7.1% 5.7%* 9.8% 2017  Percent of adolescents who reported that they currently smoked cigarettes or cigars or used smokeless tobacco or an electronic vapor product23 9.7% 19.5% 21.0% 8.7% ** 13.8% 2017 ADOLESCENT HEALTH Mental Health Status 23 Tobacco Use  Percent of adolescents who reported that they have ever used an electronic vapor product 15 23d Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 92  Percent of adolescents who reported that they have never drank alcohol 23 69.6% 39.6% 94.2% 73.8% ** 49.8% 2017  Percent of adolescents who reported that they had their first drink of alcohol before age 13 years (other than a few sips)23 7.8% 15.2% --- 6.5% ** 12.3% 2017  Percent of adolescents who reported that they currently drank alcohol 23 10.6% 29.8% 12.8% 9.6% 7.3% 18.2% 2017  Percent of adolescents who reported current binge drinking 7.8% 13.5% 8.6% 4.0% ** 9.7% 2017  Percent of adolescents who reported that they have ever used marijuana 23 16.6% 35.6% 3.7% 13.3% ** 30.3% 2017  Percent of adolescents who reported that they tried marijuana for the first time before age 13 years23 4.1% 6.8% --- 2.6% ** 7.9% 2017  Percent of adolescents who reported that they currently used marijuana 23 8.1% 19.8% 6.0% 6.4% ** 15.7% 2017  Percent of adolescents who reported that they have ever used cocaine (any form of cocaine, such as powder, crack, or freebase)23 3.4% 4.8% 12.8% 2.2% ** 6.3% 2017  Percent of adolescents who reported that they have ever took prescription pain medicine without a doctor's prescription or differently than how a doctor told them to use it (counting drugs such as codeine, Vicodin, Oxycontin, Hydrocodone, and Percocet)23 9.4% 14.0% --- 8.9% ** 10.7% 2017  Percent of adolescents who reported being offered, sold, or given an illegal drug on school property23 25.9% 19.8% 20.4% 23.8% 27.3% 33.6% 2017  Drug related death rate, ages 15 - 24 years old, per 100,000 population22 13.1 13.0 11.3 13.5 10.3* 6.1* 2017 Ɣ ADOLESCENT HEALTH Substance Abuse 23e Ɣ 3-year estimate for ethnicity 16 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 93  Percent of adolescents who reported that they sometimes, most of the time, or always wore a seat belt (when riding in a car driven by someone else)23 90.5%* 94.1% 92.0% 91.7%* 95.5%* 86.4% 2017  Percent of adolescents who reported riding in a car with a driver who had been drinking alcohol 23 14.7% 16.5% 25.5% 12.3% 19.5% 21.5% 2017  Percent of adolescents who reported droving when they had been drinking alcohol 2.8% 5.5% --- 2.3% ** 4.6%* 2017 40.6% 39.2% --- 41.2% ** 36.0% 2017  Nonfatal intentional self-harm injury rate, ages 12 - 17, emergency department visits per 100,000 population18, 25 425.7 364.9 112.4 --- --- --- 2014  Nonfatal injury hospitalization rate, ages 10 - 19, per 100,000 population7, 20 207.4 221.4 555.8 --- --- --- 2014  Motor vehicle death rate, ages 15 - 19, per 100,000 population22 9.5 12.1 12.4 9.9 ** 13.6* 2017 ₼  Teen suicide rate, ages 15 - 19, per 100,000 population ADOLESCENT HEALTH Traffic Related Injury 23  Percent of adolescents who reported texting or e-mailing while driving a car or other vehicle23 Hospitalizations Mortality 22 21.5 11.8 10.2 22.1 ** 13.6* 2017 ₼ 22 14.5 15.5 14.8 16.4 23.0* 7.7* 2017 ₼  Adolescent mortality rate, ages 15 - 19, per 100,000 population 22 54.5 51.5 54.3 53.6 49.8 56.1 2017 ₼  Adolescent mortality rate, ages 10 - 19, per 100,000 population4 34.7 33.1 --- 35.5 41.6* 32.4 2016 ₼  Adolescent mortality rate, ages 10 - 14, per 100,000 population ₼ 3-year estimate for ethnicity --- Data not available *Estimate is unreliable and should be interpreted with caution **Indicator is not reportable due to a very small number of observed events 17 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 94  Percent of Children with Special Health Care Needs, ages 0 -1714 16.4% 19.4% --- 17.3% 9.6%* 15.0% 2016  Percent of children who received a developmental screening using a parent-completed screening tool in the past year, ages 9 - 35 months14 33.1% 30.4% --- 37.8% ** ** 2016  Percent of children with special health care needs who have a medical home, ages 0 -1714a 18.4% 16.5% --- --- --- --- 2016  Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care, ages 12 - 1714 44.9% 40.7% 28.1% --- --- --- 2016  Percent of children with special health care needs who receive care in a well-functioning system, ages 0 - 1714b 16.7% 16.5% --- 19.7% ** ** 2016  Percent of children who have current allergies, ages 0 - 1714c 17.8% 19.8% --- 18.4% 16.4% 15.4% 2016  Percent of children whose parent rated severity of their child’s current allergies as moderate or severe, ages 0 - 1714 6.1% 8.6% --- 6.9% 4.7%* 2.8%* 2016  Percent of children who have difficulty with breathing or other respiratory problems, ages 0 - 1714 7.5% 9.6% --- 7.7% 6.3%* 7.5%* 2016  Percent of children who currently have asthma ages 0 - 1714 6.2% 8.4% --- 6.5% 7.4% 5.4% 2016  Percent of children whose parent rated severity of their child’s current asthma as moderate or severe, ages 0 - 1714 1.6% 2.8% --- 1.9% 2.4%* 0.3%* 2016 CSHCN HEALTH Health Care Access and Utilization Respiratory Health 18 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 95  Percent of children with 1 or more specific functional difficulties, ages 0 - 1714d 15.5% 16.0% --- 17.8% 8.6%* 8.1%* 2016  Percent of children with 2 or more specific functional difficulties, ages 0 - 1714d 8.3% 10.8% --- 7.0% 10.7%* 12.4% 2016  Percent of children who have deafness or hearing problems, ages 0 - 17 0.9%* 1.4% --- --- --- --- 2016  Percent of children who have blindness or problems with seeing, even when wearing glasses, ages 0 - 1714 1.7%* 1.6% --- --- --- --- 2016  Percent of children who have difficulty with eating or swallowing because of a health condition, ages 0 - 1714 2.0% 1.6% --- --- --- --- 2016  Percent of children who have difficulty with digesting food, including stomach/intestinal problems, constipation, or diarrhea , ages 0 - 1714 7.7% 7.7% --- 6.7% 11.2%* 10.8%* 2016  Percent of children who have difficulty using hands, ages 0 - 514 3.9% 9.6% --- --- --- --- 2016  Percent of children who have difficulty coordinating or moving around, ages 0 - 5 3.7% 10.2% --- --- --- --- 2016  Percent of children who have difficulty with repeated or chronic physical pain, including headaches, ages 0 - 1714 6.1% 6.5% --- 6.7% 3.7%* 4.6%* 2016 CSHCN HEALTH Physical Functioning 14 14 19 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 96  Percent of children with current anxiety problems, ages 3 - 1714 10.6% 7.1% --- 11.1% 6.6%* 9.7%* 2016  Percent of children whose parent rated severity of their child’s current anxiety problems as moderate or severe, ages 3 - 1714 5.9% 3.9% --- 5.7% 5.3%* 6.9%* 2016  Percent of children with current depression, ages 3 - 1714 3.3% 3.2% --- --- --- --- 2016  Percent of children whose parent rated severity of their child’s current depression as moderate or severe, ages 3 - 1714 2.0% 1.7% --- --- --- --- 2016  Percent of children with serious difficulty concentrating, remembering, or making decisions, ages 6 1714 11.0% 10.0% --- 11.3% 8.3%* 12.3%* 2016  Percent of children with current ADD or ADHD, ages 3 - 1714 9.8% 8.9% --- 11.1% 6.8%* 4.3%* 2016  Percent of children whose parent rated severity of their child’s current ADD or ADHD as moderate or severe, ages 3 - 1714 5.2% 5.1% --- 6.0% 4.1%* 1.4%* 2016  Percent of children with current behavioral or conduct problems, ages 3 - 1714 7.4% 7.4% --- 7.8% 10.2%* 4.2%* 2016  Percent of children whose parent rated severity of their child’s current behavioral and conduct problem as moderate or severe, ages 3 - 1714 4.0% 4.4% --- 3.9% 5.9%* 3.3%* 2016  Percent of children with a current other mental condition, ages 3 - 1714 6.9% 5.0% --- 7.1% 6.2%* 5.6%* 2016  Percent of children whose parent rated severity of their child’s current other mental health condition as moderate or severe, ages 3 - 1714 4.8% 3.4% --- 5.1% 2.7%* 4.0%* 2016  Percent of children with a mental/behavioral condition who receive treatment or counseling, ages 3 - 1714 50.0% 52.8% --- --- --- --- 2016 CSHCN HEALTH Mental Health and Cognitive Functioning 20 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 97  Percent of children with a current developmental delay, ages 3 - 1714 5.1% 4.8% 13.6% 5.1% 7.1%* 3.8%* 2016  Percent of children whose parent rated severity of their child’s current developmental delay as moderate or severe, ages 3 - 1714 3.4% 2.8% --- 3.5% 4.6%* 2.2%* 2016  Percent of children with a current speech or language disorder, ages 3 - 1714 6.3% 5.2% --- 6.2% 9.1%* 5.5%* 2016  Percent of children whose parent rated severity of their child’s current speech or language disorder as moderate or severe, ages 3 - 1714 2.5% 2.3% --- --- --- --- 2016  Percent of children with a current learning disability, ages 3 - 1714 5.8% 6.7% --- 5.4% 5.0%* 7.0%* 2016  Percent of children whose parent rated severity of their child’s current learning disability as moderate or severe, ages 3 - 1714 3.4% 3.8% --- 3.2% 4.0%* 3.2%* 2016  Percent of children with current autism or autism spectrum disorder, ages 3 - 1714 3.4% 2.5% --- --- --- --- 2016  Prevalence of current genetic or inherited condition, ages 0 - 1714 4.1% 2.9% --- --- --- --- 2016  Percent of children whose parent rated severity of their child’s current genetic or inherited condition as moderate or severe, ages 0 - 1714 2.7% 1.7% --- --- --- --- 2016  Children born with Anencephaly, per 10,000 live births 26,27 1.8 1.7 2.2 1.4 ** 3.9* ₼  Children born with anophthalmia/microphthalmia, per 10,000 live births 26,27 1.2 1.1 --- 1.1 ** 2.2* ₼  Children born with anotia/microtia, per 10,000 live births 3.2 1.5 --- 2.4 7.4* 6.1 ₼  Children born with aortic valve stenosis, per 10,000 live births 26,27 4.1 1.8 --- 4.4 ** 3.9* ₼  Children born with atrial septal defect, per 10,000 live births 34.7 64.7 --- 34.8 37.2 39.4 ₼ 6.8 4.2 --- 7.2 6.5* 6.1 ₼ CSHCN HEALTH Learning and Development Birth Defects and Genetic Conditions 26,27 26,27  Children born with atrioventricular septal defect, per 10,000 live births 26,27 ₼ UT 3-year estimate (2013 - 2015); US 3-year estimate (2008 - 2012) 21 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 98 1.0 0.6 --- 1.0* ** ** ₼ ** 0.3 --- ** ** ** ₼ 1.2 1.2 --- 1.3 ** ** ₼  Children born with cleft lip with cleft palate, per 10,000 live births 26, 27 6.8 5.9 --- 7.4 4.7* 5.6* ₼  Children born with cleft lip without cleft palate, per 10,000 live births 26, 27 5.2 3.2 --- 5.1 6.5* 5.6 ₼  Children born with cleft palate without cleft lip, per 10,000 live births 26, 27 8.6 6.1 --- 9.3 5.6* 8.2 ₼ 9.5 5.6 --- 10.0 5.6* 10.4 ₼ 0.7* 0.8 --- 0.6* ** ** ₼ 2.9 1.5 --- 3.2 ** 3.0* ₼ 2.0 1.3 --- 1.0 ** ** ₼ 9.9 5.0 --- 10.5 ** 11.7 ₼ 1.4 0.5 --- 1.4 ** 2.2* ₼ 4.1 2.8 --- 4.3 5.6* 3.5* ₼ 2.0 1.7 --- 2.1 ** ** ₼  Children born with Ebstein anomaly, per 10,000 live births 26, 27 1.1 0.7 --- 1.0 ** 2.2* ₼  Children born with Encephalocele, per 10,000 live births 1.6 0.8 --- 1.7 ** ** ₼ 3.6 2.2 --- 3.9 ** 2.6* ₼ CSHCN HEALTH Birth Defects and Genetic Conditions, continued  Children born with biliary atresia, per 10,000 live births 26, 27  Children born with bladder exstrophy, per 10,000 live births 26, 27  Children born with choanal atresia, per 10,000 live births 26, 27  Children born with coarctation of aorta, per 10,000 live births 26, 27  Children born with common truncus (truncus arteriosus), per 10,000 live births 26, 27  Children born with congenital cataract, per 10,000 live births 26, 27  Children born with Congenital Posterior Urethral Valves, per 10,000 live births  Children born with craniosynostosis, per 10,000 live births 26, 27 26, 27  Children born with Deletion 22 q 11.2, per 10,000 live births 26, 27  Children born with diaphragmatic hernia, per 10,000 live births 26, 27  Children born with Double Outlet Right Ventricle (DORV), per 10,000 live births 26, 27 26, 27  Children born with esophageal atresia/tracheoesophageal fistula, per 10,000 live births 26, 27 ₼ UT 3-year estimate (2013 - 2015); US 3-year estimate (2008 - 2012) 22 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 99 4.6 4.5 --- 4.6 ** 6.1 ₼ 1.8 2.1 --- 1.6 ** 3.9* ₼  Children born with hypoplastic left heart syndrome, per 10,000 live births 26, 27 2.9 2.5 --- 3.0 ** 2.6* ₼  Children born with Hypospadias, per 10,000 live births 73.3 64.7 --- 43.4 28.9 16.0 ₼ 0.8 0.5 --- 0.7* ** ** ₼ 6.7 4.2 --- 7.2 ** 6.1 ₼ 2.7 2.0 --- 2.9 ** 2.6* ₼ 12.0 8.3 --- 12.0 9.3* 16.0 ₼ 4.1 4.0 --- 4.6 ** 3.0* ₼  Children born with renal agenesis/hypoplasia, per 10,000 live births 26, 27 4.6 4.4 --- 4.8 5.6* 3.9* ₼  Children born with single ventricle, per 10,000 live births 0.5* 0.7 --- 0.4* ** ** ₼  Children born with small intestinal atresia/stenosis, per 10,000 live births 26, 27 3.4 3.2 --- 3.4 ** 3.9* ₼  Children born with spina bifida (without anecephaly), per 10,000 live births 4.2 3.5 3.1 4.6 ** 3.5* ₼ 4.0 4.0 --- 4.3 ** 3.9* ₼ 1.4 0.8 --- 1.2 ** 2.6* ₼  Children born with transportation of the great arteries (vessels), per 10,000 live births 26, 27 5.2 3.1 --- 5.0 8.4* 5.6 ₼  Children born with Trisomy 13, per 10,000 live births 26, 27 1.6 1.0 --- 1.3 ** ** ₼ CSHCN HEALTH Birth Defects and Genetic Conditions, continued  Children born with Gastroschisis, per 10,000 live births 26, 27  Children born with Holoprosencephaly, per 10,000 live births 26, 27 26, 27  Children born with Interrupted aortic arch, per 10,000 live births 26, 27  Children born with limb deficiencies combined, per 10,000 live births 26, 27  Children born with Omphalocele, per 10,000 live births 26, 27  Children born with pulmonary valve atresia and stenosis, per 10,000 live births 26, 27  Children born with rectal and large intestinal atresia/stenosis, per 10,000 live births 26, 27 26, 27 26, 27  Children born with tetralogy of fallot, per 10,000 live births 26, 27  Children born with Total Anomalous Pulmonary Venous Connection (TAPVC), per 10,000 live births 26, 27 ₼ UT 3-year estimate (2013 - 2015); US 3-year estimate (2008 - 2012) 23 Utah U.S. HP2020 Goal White, Non-Hispanic Other, Non-Hispanic Hispanic / Latino Data Year 100 3.5 2.4 --- 3.5 ** 2.6* ₼ 18.1 13.0 --- 17.1 19.6* 24.7 ₼  Children born with Turner syndrome, per 10,000 live births 26, 27 5.4 2.1 --- 2.7 ** 3.5* ₼  Children born with ventricular septal defect, per 10,000 live births 26, 27 24.1 --- 23.7 21.4 29.5* ₼ CSHCN HEALTH Birth Defects and Genetic Conditions, continued  Children born with Trisomy 18, per 10,000 live births 26, 27  Children born with Trisomy 21 (Down syndrome), per 10,000 live births 26, 27 ₼ UT 3-year estimate (2013 - 2015); US 3-year estimate (2008 - 2012) --- Data not available *Estimate is unreliable and should be interpreted with caution **Indicator is not reportable due to a very small number of observed events 24 101 DATA SOURCES AND NOTES 1. American Community Survey (ACS) ii. Primary Cesarean Section rate: Calculated as the number of women having a first cesarean delivery divided by the number of live births to women who have never had a cesarean delivery, multiplied by 100. The denominator for this rate excludes those with method of delivery classified as repeat cesarean, vaginal birth after previous cesarean, or method not stated. 2. The Behavioral Risk Factor Surveillance System (BRFSS) a. Reproductive age: Defined women ages 18 - 44 3. Pregnancy Risk Assessment Monitoring System (PRAMS) a. Postpartum depression: Defined as responding yes to either of the following, “Since your new baby was born, how often have you felt down, depressed, or hopeless?”; “Since your new baby was born, how often have you had little interest or little pleasure in doing things you usually enjoyed?” iii. Primary Cesarean Section rate among low risk females: Calculated as the number of live births to low risk females (full-term, singleton, vertex presentation) having a first cesarean delivery divided by the number of live births to low risk females. iv. Repeat Cesarean Section rate: Calculated as the number of repeat cesarean deliveries resulting in a live birth divided by the sum of VBAC and repeat cesarean deliveries, multiplied by 100. b. Abuse prior pregnancy: Defined as responding yes to following, “During the 12 months before you got pregnant with your new baby, did your husband or partner push, hit, slap, kick, choke, or physically hurt you in anyway?” c. Abuse during to pregnancy: Defined as responding yes to following, “During your pregnancy with your new baby, did your husband or partner push, hit, slap, kick, choke, or physically hurt you in anyway?” v. Repeat Cesarean Section rate among low risk females: Calculated as the number of live births to low risk females (full-term, singleton, vertex presentation) with a previous cesarean delivery divided by the number of live births to low risk females with a previous cesarean delivery. d. Partner associated stress during pregnancy: Defined as responding yes to any of the following, “I got separated or divorced from my husband or partner,” “I argued with my husband or partner more than usual,” or “My husband or partner said they didn’t want me to be pregnant.” vi. Vaginal Births After Cesarean Section (VBAC) rate: Calculated as the number of VBAC deliveries resulting in a live birth divided by the sum of VBAC and repeat cesarean deliveries, multiplied by 100. 5. Utah Office of Vital Records and Statistics (OVRS) e. Trauma related stress during pregnancy: Defined as responding yes to any of the following, “My husband, partner, or I went to jail,” “I was homeless or had to sleep outside, in a car, or in a shelter,” or “Someone very close to me had a problem with drinking or drugs.” f. Emotional stress during pregnancy: Defined as responding yes to either of the following, “A close family member was very sick and had to go to the hospital”; “Someone very close to me died.” a. Adequate weight gain during pregnancy: Defined as gaining the recommended amount of weight during pregnancy, based upon the mother’s pre-pregnancy BMI and whether the pregnancy is a single or multiple gestation. http://www.babyyourbaby.org/ pregnancy/during-pregnancy/weight-gain.php 6. National Survey of Family Growth (NSFG) 7. Healthcare Cost and Utilization Project-State Inpatient Database (HCUP-SID) 8. Utah Early Hearing and Detection and Intervention (EHDI) Program - HI*TRACK Hearing Screening Tracking and Data Management g. Financial stress during pregnancy: Defined as responding yes to any of the following, “My husband or partner lost their job,” “I lost my job even though I wanted to go on working,” “I had problems paying the rent, mortgage, or other bills,” or “I moved to a new address.” 9. State-based Early Hearing Detection and Intervention Program Network (EHDI), Centers for Disease Control and Prevention (CDC)/National Center on Birth Defects and Developmental Disabilities (NCBDDD) 4. National Vital Statistics System (NVSS) a. Fetal Death 10. Newborn Screening Program Data - LabWare; Utah Department of Health Data Warehouse b. Natality 11. National Immunization Survey (NIS) i. Total Cesarean Section rate: Calculated as the number of births delivered by cesarean section divided by the total number of live births less the not-stated values for delivery method, multiplied by 100. 12. Linked Birth/Infant Death Data Set, CDC/National Center for Health Statistics (NCHS) 25 a. Sudden Infant Death Syndrome queried: [ICD-10 code: R95] b. Sleep-related Sudden Unexpected Infant Death queried: [ICD-10 codes: R95 (SIDS), R99 102 DATA SOURCES AND NOTES c. Infant Mortality Associated with Birth Defects queried: [ICD-10 codes Q00-Q99] 13. National Health Interview Survey (NHIS), CDC/NCHS 14. Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. 2016 National Survey of Children’s Health. a. Medical home: Defined as having a personal doctor or nurse, usual source for care, and family-centered care; referrals or care coordination if needed) b. Well-functioning system: Defined as receiving all components of a well-functioning system (family partnership, medical home, early screening, adequate insurance, easy access to services, and preparation for adult transition) c. Allergies: Defined as an food, drug, insect, or other allergy d. Functional difficulties: Defined as a count of having any 12 difficulties asked about through two questions: (1) During the past 12 months, whether the child had frequent or chronic difficulty with breathing or other respiratory problems; eating or swallowing; digesting food, including stomach/intestinal problems, constipation, or diarrhea; repeated or chronic physical pain, including headaches or other back or body pain; using his/her hands; coordination and moving around (2) Whether the child has serious difficulty concentrating, remembering, or making decisions; serious difficulty walking or climbing stairs; difficulty dressing or bathing; difficulty doing errands alone, such as visiting a doctor’s office or shopping, deafness or problems with hearing; and blindness or problems with seeing, even when wearing glasses. 15. Women Infants and Children Participant and Program Characteristics file (WIC PC) 16. Utah Oral Health Survey. Health Indicator Report of Dental Disease 17. National Health and Nutrition Examination Survey (NHANES), CDC/NCHS 18. Utah Emergency Department Encounter Database, Bureau of Emergency Medical Services, Utah Department of Health 19. National Hospital Ambulatory Medical Care Survey (NHAMCS), CDC/NCHS 20. Utah Inpatient Hospital Discharge Data, Office of Health Care Statistics, Utah Department of Health 21. National Hospital Discharge Survey (NHDS), CDC/NCHS 22. Underlying Cause of Death 1999-2017, CDC/NCHS 23. Youth Risk Behavior Surveillance System (YRBSS) a. Eating vegetables: Defined as eating green salad, potatoes (not counting French fries, fried potatoes, or potato chips), carrots, or other vegetables, during the 7 days before the survey b. 100% fruit juices: Defined as juices such as orange juice, apple juice, or grape juice, not counting punch, Kool-Aid, sports drinks, or other fruit-flavored drinks c. Drinking milk: Defined as drinking milk in a glass or cup, from a carton, or with cereal and counting the half pint of milk served at school as equal to one glass, during the 7 days before the survey d. Electronic vapor product: Defined as e-cigarettes, e-cigars, e-pipes, vape pipes, vaping pens, e-hookahs, and hookah pens e. Binge drinking: Defined as having four or more drinks of alcohol in a row (if they were female) or five or more drinks of alcohol in a row (if they were male), within a couple of hours 24. National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention Atlas 25. National Electronic Injury Surveillance System-All Injury Program (NEISS-AIP) 26. Utah Birth Defect Network 27. National Birth Defects Prevention Network (NBDPN) 26 This report was prepared by the State System Development Initiative (SSDI) Technical Team: Michelle Silver, MSPH Rob Satterfield, MStat Shaheen Hossain, PhD 103 Attachment C 104 TRIBAL PERSPECTIVES ON MATERNAL AND CHILD HEALTH (MCH) IN UTAH Sharon Talboys, PhD, MPH Asst. Professor, Division of Public Health, University of Utah 801-903-7464 (Mobile) [e-mail] January 9, 2020 Introduction The Utah Department of Health (UDOH) embarked on a statewide MCH needs assessment, which is required every five years by HRSA, for the Maternal and Child Health (Title V) Block Grant and the Maternal Infant and Early Childhood Home Visiting (MIECHV) Grant program. UDOH sought input from tribal health leaders to provide input on maternal and child health and home visiting program priorities for tribal & urban Indian communities located in the state of Utah. This document reflects important perspectives from tribal health leaders to guide MCH efforts that are appropriate and relevant for tribal communities in Utah. Approach The UDOH Bureau of MCH and the University of Utah assessment team entered into a tribal consultation process with the Utah Indian Health Board (UIHB) with assistance from the UDOH Office of AI/AN Health Affairs from June 2019 – Jan 2020. The UIHB represents Indian Health Services, Tribes, and an Urban Indian organization. The UIHB members provided guidance on the data gathering approach and participated in the assessment as key informant/subject matter experts. The data gathering approach included a simplified questionnaire (Attachment A) for UIHB members. The questionnaire was administered and discussed as a group at the September, 2019 UIHB meeting in Blanding, Utah. Copies with postage paid envelopes were also provided to give board members the option to distribute to other community members. The discussion was facilitated by Dr. Sharon Talboys from the University of Utah and notes were taken by her team. A draft of the proceedings was presented at the November 2019 UIHB meeting and board members assisted with further interpretation. Assessment Questions Discussion questions focused on needs and challenges, successes and assets, the community context, and vision for MCH. Questions included: 1. In your opinion, what MCH issues are most important in your community? 2. What is working well in your community to promote MCH health? What services do people like? 3. Can you tell us what life is like or what it’s like for a mother, father, auntie, grandparent, or other caregivers in your community. 4. In an ideal world, what would maternal and child health look like in your community? 105 Results Ten organizations were represented in the discussion of maternal and child health needs at the September 2019 meeting in Blanding, Utah (Table 1). No community questionnaires were received. Priorities identified are summarized in Table 2. Results from the discussion are summarized into three main areas including 1) Cultural context, 2) Community Strengths, assets, and services, and 3) Challenges, barriers, and needs. Table 1. Organizations Represented in Discussion Indian Health Services Albuquerque Area Office Navajo Area Office Phoenix Area Office Tribes Confederated Tribes of the Goshute Reservation Navajo Nation Department of Health Northwestern Band of Shoshone Nation Paiute Indian Tribe of Utah Utah Navajo Health Systems, Inc. Ute Mountain Ute Tribe Urban Indian Urban Indian Center of Salt Lake Table 2. Health Priorities by Populations Health Topic Women Reproductive and sexual health Child health issues Mental and Behavioral Health Violence prevention (Cross Cutting) Access (Cross Cutting) • Unintended Pregnancy • Reproductive health education • Preconception health • Prenatal care • STIs • Parenting support • Substance use and addiction Adolescents Infants/children Families / Men • HPV Vaccination • Immunizations • Parenting support • WIC • Childcare • ACES • Substance use • Sex education • Unintended pregnancy • STIs • Substance use Intimate Partner Violence Interpersonal Violence Abuse/Neglect Distance / Rurality Culturally appropriate/sensitive • WIC • STI 106 1. Communities and Families in Context Aspects AI / NA community values and norms were discussed that are important for health professionals and planners to consider. A key theme is the importance of family. The meaning of family often extends to the whole community, rather than just the nuclear family unit. Another is that parents and grandparents love and live for their children and health education is a family affair. Tribal identity is highly valued and can be threatened when tribal peoples are in institutions or systems where they feel like a “number”. Extended family members, often grandparents play a critical role in family support, especially if there is substance use or addition with the parents or other hardships. Table 3. Discussion points on the concept of community, family, and identity Community is In small communities, it’s more like a huge family. Family and community Family oriented activities are well received by community and a normal way to work on community issues. Many community incorporate family events, such as at the Utah-Nevada border. Cultural traditions; whole family focus. Community identity is an asset. Identity is important We need to break the bad cycles with new ideas and programs (community, family oriented). We lose our traditions when our people go to border towns. Our children are put into systems where they become “a number”. This is a hard ship for our people. When programs are in their own language and culture it is received well. Space and provider sensitization to rituals and traditions should be supported and recognized as part of the health process. UNHS has done this well. Providers in other places could learn to support and recognize importance of tradition and culture. You get better results that way – examples – older native people will take medications but will want to come home and have their ceremonies too (settles them down) – it’s a family orientation and should be incorporated and respected, gives people a sense of confidence. Role of grandparents, aunties and uncles is important Grandparents are the comfort zone for everyone. In the communities, they’re trying to sustain and raise the children the best they can. We need to break the struggles and bring back community support systems. Health is a family affair Health education and health issues are a family affair and families should be trained together. Activities such as community events were recommended. Even for home visiting, it could be modified to include more community gatherings. Grandparents take on the responsibility in order to give the grandchild an opportunity at life (especially if there is substance abuse). 107 2. Strengths, assets, and services MCH Specific Nurses - Many communities are rural or frontier and lack clinicians with specific maternal and child health skills. One of the Ute Mountain Ute clinics has a nurse is skilled in and dedicated to maternal child health. She has extensive connections in the community and with services, conducts home visits, and makes sure the patient has everything they need. Mental Health - UNHS provides mental health care in everything it does, they refer patients to mental health providers. Home Visiting - Home visiting is a work in progress, it works well when there’s funding. Home visiting funding is always an issue. They can meet elsewhere besides in the home (don’t have to go to their homes). The support is good. There are dedicated providers that provide great case management. WIC - WIC and Community Health Workers are helpful and know who they need to visit. They tailor the care to the patient and their needs. They meet the patients where they’re at. Parents support sex education for youth - At the Urban Indian Center in SLC, parents are supportive of the teen pregnancy preventions programs. 3. Challenges, barriers, needs Sexual and Reproductive Health • There is concern for increasing rates of STIs, including syphilis and more education is needed on risks and types of STIs for youth and adults. • Many pregnancies are unplanned. More education is needed for potential mothers and youth so they can avoid unintended pregnancies, education on teen pregnancy. Teen and unplanned pregnancy seem to be normalized. It would be good to help people shift these attitudes by appealing to aspirations. • Health education needs to focus on youth sex education, preconception, and nutrition. Provide education early and not just for potential mothers but for all youth – arm them with information (to avoid unplanned pregnancies) – get information/education to all native youth. • Prenatal Care is needed earlier, shift attitudes about PNC. Women often delay or do not seek prenatal care, they’re not getting the recommended level of care. Mental and Behavioral Health • Need education on the effects of alcohol, meth, and opioids. • Mental and behavioral health is an issue and we would like to address all abuse: sexual, emotional, domestic, physical abuse. Intimate partner violence is quite prevalent in White Mesa. Violence in all forms needs to be addressed. • Youth should be screened mental health issues at pre-teen ages (10, 11, 12 year olds). 108 Nutrition and Physical Activity • Concern was stated about children gaining weight at higher rates than children of other races, higher than national average and beginning at a young age (0-4). There is also concern with adult nutrition, lack of physical activity, and obesity. It is also important to understand cultural practices about nutrition for girls – who have a different diet when they are menstruating. • Parents need more support for childcare and to reduce barriers to enrichment activities for kids. Ideally, parents would be able to afford to get their kids in sports or after school programs. Maybe they can’t pay the fee, or don’t have transportation. We need to help these kids have a chance to participate. Childhood Immunizations • Would like to see HPV promoted more. • Vaccine hesitancy for childhood immunizations is not a big issue. Most parents are getting their children vaccinated and these efforts should continue. Economic/Financial Barriers • Financial struggles and getting more education for parents and for their children are a concern and barrier. Grandparents often step in and help raise the children when parents are struggling. A high proportion of the population is living under the poverty level. Fathers, and sometimes mothers, often are absent because they have to travel out of the area to find employment. This puts a strain on families. Recommendations 1. Continue investing in home visiting, WIC, and other parent supports for tribal communities and adapt these programs to be more holistically oriented to families and the tribal community. 2. Provide more comprehensive sexual health education that includes parents and is more oriented to the tribal community. 3. Include tribal entities as partners in the delivery of maternal and child health and home visiting programs through state-level grantmaking. Contact information: Sharon Talboys, PhD, MPH, Asst. Professor, Division of Public Health, University of Utah 801-903-7464 (Mobile) [e-mail] Lynne Nilson, MPH, MCHES, Director, Bureau of Maternal and Child Health, Utah Department of Health 801-694-3749 [e-mail] Noël Taxin, MS, Bureau Director, Children with Special Healthcare Needs, Utah Department of Health [phone] [e-mail] 109 Attachment D 110 Meeting Proceedings TITLE V MATERNAL AND CHILD HEALTH SUMMIT Friday, February 28th, 2020 10:00am-2:00pm Hosts: Lynne Nilson, MPH, MCHES – Bureau Director of Maternal and Child Health, Utah Department of Health Noël Taxin, MS, Bureau Director of Children with Special Healthcare Needs, Utah Department of Health Facilitators: Sharon Talboys, PhD, MPH – Assistant Professor, University of Utah, Division of Public Health Steven Godin, PhD, MPH, PHI Certificate - Visiting Professor, University of Utah, Division of Public Health FeliAnne Hipol, MPH – Graduate Research Assistant, University of Utah, Division of Public Health WELCOME AND OBJECTIVES 10:00 AM Welcome and Opening Remarks Lynne Nilson MCH Strategic Planning Process Lynne Nilson Stakeholder Poll / Orientation Sharon Talboys Tested the online poll process, about 1/3 people interested in women, 13% infants, 17% CSHCN, 12% adolescents, 15% all topics ASSESSMENT 10:15 AM Needs Assessment Results Sharon Talboys and Shaheen Hossain Review of the stakeholder survey (see previous documents), nearly 2000 people responded to the survey. See infographic on the table. Worked with the Tribes through consultation process going back to the tribes at different times. Review of the themes. Example of funding amounts and stability, changes in Home Visiting funding. Care coordination challenges, referrals and challenges sometimes, but sometimes have good networking across programs. Comment that someone wanted to do more needs assessments, more conversations with provider and parents. Needs for mental health providers and system improvements. Attitudes and perceptions regarding enrollment, people may not want to use government services, immigrant communities may fear deportation. Parenting and child care, need for more parent education, access to childcare (some counties don’t have any childcare). 111 Evidence of quality, doing more with less, dedicated staff. Social determinants of health. Women’s health, depression/mental health; access to care; access to family planning at the top. Children’s health, depression/mental health, abuse/neglect, parental involvement, adequate school nursing, screen time, poverty, Example of Local Health Department employee helping children for clothing/shoes need during vision screening event. Adolescent, depression, hookup culture, screen time, etc. Vaping, need for school nurses, more reproductive health education, perception that marijuana is healthy; bullying, life skills (different main topics in survey vs. focus groups). DIRECTION SETTING Strategic Direction Proposals by UDOH Domain Leaders and Audience Response (facilitated) 10:45 AM Women/Maternal Laurie Baksh and Amy Nance Discussion of women’s domain, group membership listed, picked National Performance Measures, will be working on the evidence based strategies in the near future; Priority needs: Perinatal mood and anxiety disorders, access to care, illicit substance use, domestic violence. Looking at other funding streams that might fund work on those items. Recommended NPSs: NPM #1 Well Woman Visit addressing access to care and domestic violence, family planning Poll for priorities ranking, Perinatal mood and anxiety disorders, access to care, illicit substances, domestic violence. 11:00 AM Infant / Perinatal Laurie Baksh and Amy Nance Infant up to 1 year of age. Priorities for breastfeeding, others. Recommended NPMs: Breastfeeding NPM #4, Safe Sleep NPM#5 (How many SIDS deaths do we have?) (took off perinatal regionalization since Utah now meets the Healthy People Goals. Development not discussed in Infant since it is in the Child domain. 11:15 AM Children Nicole Bissonette and Anna Fondario Recommended NPM: Developmental Screening. Some recommended SPMs, nutrition, physical activity, family stability 112 11:30 AM Adolescents Nicole Bissonette and Anna Fondario Review of workgroup. Priority needs of depression, mental health, anxiety, bullying, suicide, physical activity, etc. Recommended NPM: Bullying, ages 12 through 17. Recommending SPMs, nutrition and physical activity, family stability, social norms, connectedness. 11:45 AM Children with Special Healthcare Needs Noël Taxin and Eric Christiansen Recommended NPM: Medical Home, Transition to Adulthood. Have had challenges with activities in the past due to lack of laws and incentives (care coordination, records, etc). Medical Home Measures: 1. 2. 3. 4. 5. 6. Providers trained on medical home/CSHCN Providers who practice medical home components Providers who educate patients on the medical home CSHCN served by Bureau with medical home care Providers using telehealth CSHCN reached with telehealth Strategies, see slides, information call-in line for families, Transition: 1. Create workgroup to market transition to adulthood 2. Inform and educate public about transition to adulthood, including call in line (second most popular from survey in the room at the meeting) 3. Create a collaborative work group with DCFS, Foster Care nurses to identify a functional model to educate TAL foster care population (most popular in survey at the meeting) 4. Select database to collect data on transition efforts. Want to collaborate among programs, have a van to go around and provide services, collaborate more with LHDs. Noon Lunch Break STRATEGIC GOAL SETTING 12:30 PM Presentation of Participant Comments Sharon Talboys 12:45 PM Round Table and Virtual Discussions Participants / Facilitators Going back to look at key comments from earlier: Adolescent: adolescents do see clinicians to for well visits, physical activities, mindfulness based strees reduction, bullying, depression, anxiety, family stability, connected to communities, stress reduction, 113 access to care, transition to adulthood, positive opportunities, gender identity, replace screen time with physical activity CSHCN: telehealth, prevention, less severe disabilities, integrated data DCFS, oral health, more services for CSHCN, respite, health care van, telehealth referral to medical home and transition, care management experts in medical homes, broaden collaborations, using existing databases rather than creating new, how to make it work in different jurisdictions, how to make it work in county/districts, early diagnosis, availability for all, how does it work with other workgroups, care coordinators in rural areas, mobile van 1:15 PM Round Table Reports Participants / Facilitators on the right track, mental health and support, maternal health has impact on child, promote reading, not on cell phone while breastfeeding Child Health: supportive of the NPM for developmental screening, routine screening just like immunizations, needs to happen in systems that are supportive, in medical home, child care provider, home visiting, then address any needs found from that screening. Need for additional support and funding. Work with existing programs. Consider resources that families need so children are ready when they enter school and are not behind. Embrace home visiting, developmental screening, wraparound services. Need data to track outcomes to get more support. Adolescent: Looked at comments for the group like life skills, healthy relationships, transition to adulthood, considering adding another NPM, wellness visits for adolescents may need behavioral health consultants to support them, pro-social behavior to address bullying, provide resources to change behavior; parenting skills and classes for families, promote unity between parent and child. CSHCN: Felt that we are on track with the measures and activities, need to continue with care coordination, call-in center maybe for mental health, expand telehealth, educate throughout the state so provider and community members have access to education. Don’t duplicate services, find out what other groups are doing, ongoing communication with public and other groups to reset goals if needed. Women and maternal health: maternal health, infant mental health, home visits, addressing barrier to treatment, lots of suggestions to address. Well woman care may be harder due to insurance, prioritization in people’s lives, get to adolescents and across the reproductive years, tap into providers and nurse midwives, use technology to provide reminders to clients, menstrual/fertility education to support well-woman care. Infant Health: Breastfeeding and Safe Sleep NPMs. How to expand breastfeeding education to address initiation rates, need to increase duration rates to build back up numbers/rates. Educate women before they become pregnant, expand to reach more moms. Safe Sleep, DCFS has initiated this in their investigations, promote safe sleep, more classes and education, parenting and abuse prevention classes, expanding home visiting to reach more people to educate about safe sleep, safe sleep education to other providers such as child care providers. More education in hospitals, prenatal period, try to work with legislators for legislation and funding. 114 1:30 PM Summit Results / Highlights Sharon Talboys Overall – participants were supportive of the NPM and SPM selections presented by the UDOH Unit Leaders. Rich discussion occurred at the respective tables and furthered ideas for next steps. 1:30 PM Closing Remarks Lynne Nilson 115 Attachment E 116 2020 Maternal and Child Health Needs Assessment Survey Overall Demographics (n = 1892) n (%)a 3 12 76 49 502 77 23 45 199 47 2 104 37 59 74 583 (0.23) (0.92) (5.81) (3.74) (38.35) (5.88) (1.76) (3.44) (15.20) (3.59) (0.15) (7.94) (2.83) (4.51) (5.65) 185 956 2 7 742 (16.09) (83.13) (0.18) (0.61) 7 26 9 1096 39 68 42 605 (0.54) (2.02) (0.70) (85.16) (3.03) (5.28) (3.26) 1031 156 49 656 (83.41) (12.62) (3.96) 1089 206 597 (84.09) (15.91) 1025 638 812 609 423 678 (54.18) (33.72) (42.92) (32.19) (22.36) (35.84) Participant Role (n = 1309) b Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing Gender (nb = 1150) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 1287) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 1236) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 1295) Urban Rural Missing Domain Respondents (n = 1892)c Maternal Health Infant Health Child Health Adolescent Health Children with Special Health Care Needs Access to Care Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies do not include missing cNumber of respondents who ranked issues for at least 1 of the 6 domains. 117 118 Maternal Health Domain 2020 Maternal and Child Health Needs Assessment Survey Demographics for Maternal Health Domain (n = 1025) Participant Role (nb = 654) Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing n (%)a 1 3 37 15 241 39 19 22 119 19 1 49 14 29 46 (0.15) (0.46) (5.66) (2.29) (36.85) (5.96) (2.91) (3.36) (18.20) (2.91) (0.15) (7.47) (2.14) (4.43) (7.03) 60 525 1 7 432 (10.12) (88.53) (0.17) (1.18) 6 13 3 563 19 22 21 378 (0.93) (2.01) (0.46) (87.02) (2.94) (3.40) (3.25) 539 57 27 402 (86.52) (9.15) (4.33) 539 112 374 (82.80) (17.20) 371 Gender (nb = 593) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 647) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 623) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 651) Urban Rural Missing Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies (n’s) do not include missing 119 Maternal Health Domain Maternal Health Domain – Top 10 Ranked Issues (n = 919)a Rankb 1 2 3 4 5 6 7 8 9 10 Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services Domestic violence/partner abuse Parenting knowledge Drug use: illicit use during pregnancy or postpartum Not getting immunizations Environmental exposures (such as air pollution, pesticides, other metals/chemicals)c Prenatal carec Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 9th Maternal Health Domain – Urban/Rural Rankb 1 2 3 4 5 6 7 8 9 10 Urban Respondents (n = 539)a Rural Respondents (n = 112)a Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services Domestic violence/partner abuse Parenting knowledge Drug use: prescription drug misuse and abuse during pregnancy or postpartumc Drug use: illicit use during pregnancy or postpartumc Environmental exposures (such as air pollution, pesticides, other metals/chemicals) Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services Domestic violence/partner abuse Parenting knowledge Not getting immunizations Drug use: illicit use during pregnancy or postpartum Unplanned/unintended pregnancies Male/father involvement in family planning, pregnancy, and/or parenting Drug use: prescription drug misuse and abuse during pregnancy or postpartum Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 7th 120 Maternal Health Domain Maternal Health Domain – Race/Ethnicity Non-Hispanic Other (n = 31)a Rankb Non-Hispanic White (n = 507)a 1 Depression, anxiety, or other mental health issues Depression, anxiety, or other mental health issues 2 Access to health care Access to health care 3 Not having health insurance 4 Access to family planning services 5 Domestic violence/partner abuse Access to family planning services Availability of culturally competent care Not having health insurance 6 Parenting knowledge Domestic violence/partner abuse 7 Not getting immunizations Drug use: illicit use during pregnancy or postpartum Drug use: prescription drug misuse and abuse during pregnancy or postpartum Environmental exposures Parenting knowledge Drug use: illicit use during pregnancy or postpartum Domestic violence/partner abuse Male/father involvement in family planning, pregnancy, and/or parenting Prenatal care Availability of culturally competent care Food insecurity Parenting knowledge Diabetes during pregnancy Diabetes during pregnancy 8 9 10 Hispanic (n = 57)a Access to health care Depression, anxiety, or other mental health issues Access to family planning services Not having health insurance Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. Maternal Health Domain – Participant Role Rankb 1 2 3 4 Community Members/Parents (n = 233)a Clinicians/Public Health Professionals (n = 421)a Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services 6 7 Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services Male/father involvement in family planning, pregnancy, and/or parenting Not getting immunizations Parenting knowledge 8 Domestic violence/partner abuse 9 10 Prenatal care Environmental exposures 5 Domestic violence/partner abuse Drug use: illicit use during pregnancy or postpartum Parenting knowledge Drug use: prescription drug misuse and abuse during pregnancy or postpartum Unplanned/unintended pregnancies Environmental exposures Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 121 Maternal Health Domain Maternal Health Domain – Age Categories Rankb <25 Years (n = 58)a 25 – 34 Years (n = 198)a 35 – 44 Years (n = 151)a >44 Years (n = 195)a Depression, anxiety, or other mental health issues Access to health care Not getting immunizations Not receiving dental care during pregnancy Domestic violence/partner abuse Depression, anxiety, or other mental health issues Access to health care Access to family planning services Not having health insurance Depression, anxiety, or other mental health issues Access to health care Not having health insurance Access to family planning services Drug use: illicit use during pregnancy or postpartum 6 Alcohol use during pregnancy Male/father involvement in family planning, pregnancy, and/or parenting Depression, anxiety, or other mental health issues Access to health care Not having health insurance Domestic violence/partner abuse Access to family planning services Drug use: prescription drug misuse and abuse during pregnancy or postpartum 7 Access to family planning services Not getting immunizations Drug use: illicit use during pregnancy or postpartum Parenting knowledge Male/father involvement in family planning, pregnancy, and/or parenting Folic acid use to prevent birth defects Environmental exposures Environmental exposures Prenatal care Availability of culturally competent carec Prenatal care Domestic violence/partner abuse Prenatal carec Environmental exposures 1 2 3 4 5 8 9 10 Parenting knowledge Domestic violence/partner abuse Drug use: prescription drug misuse and abuse during pregnancy or postpartum Parenting knowledge Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 9th 122 Infant Health Domain 2020 Maternal and Child Health Needs Assessment Survey Demographics for Infant Health Domain (n = 638) n (%)a 5 32 10 191 29 12 20 97 16 1 43 10 18 27 5 127 (0.98) (6.26) (1.96) (37.38) (5.68) (2.35) (3.91) (18.98) (3.13) (0.20) (8.41) (1.96) (3.52) (5.28) (0.98) 58 389 1 5 185 (12.80) (85.87) (0.22) (1.10) 6 8 3 437 14 17 17 136 (1.20) (1.59) (0.60) (87.05) (2.79) (3.39) (3.39) 420 47 20 151 (86.24) (9.65) (4.11) 429 78 95 (84.62) (15.38) Participant Role (n = 511) b Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing Gender (nb = 453) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 502) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 487) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 507) Urban Rural Missing Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies (n’s) do not include missing 123 Infant Health Domain Infant Health Domain – Top 10 Ranked Issues (n = 638)a Rankb 1 2 3 4 5 6 7 8 9 10 Access to health care Infants not receiving immunizations Infant abuse and neglect Not having health insurance Developmental delays Environmental exposures (such as air pollution, pesticides, other metals/chemicals) Poor nutrition during infancy Breastfeeding: lack of initiation Breastfeeding: exclusively at six months of age Neonatal abstinence/withdrawal (exposure to drugs while in the womb) Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. Infant Health Domain – Urban/Rural Rankb 1 2 3 4 5 6 7 8 9 10 Urban Respondents (n = 429)a Rural Respondents (n = 78)a Infants not receiving immunizations Access to health care Infant abuse and neglect Not having health insurance Developmental delays Environmental exposures Breastfeeding: lack of initiation Poor nutrition during infancy Neonatal abstinence/withdrawal Breastfeeding: exclusively at six months of age Infants not receiving immunizations Infant abuse and neglect Access to health care Not having health insurance Developmental delays Poor nutrition during infancy Breastfeeding: exclusively at six months of age Low attendance at well-baby visits Breastfeeding: lack of initiation Breastfeeding: through 1 year of age Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 124 Infant Health Domain Infant Health Domain – Race/Ethnicity Non-Hispanic Other (n = 22)a Rankb Non-Hispanic White (n = 397)a Infants not receiving immunizations 1 Access to health care 2 Infant abuse and neglect 3 Not having health insurance Access to health care Infant abuse and neglect 4 Not having health insurance Racial/ethnic inequities 5 6 7 Developmental delays Breastfeeding: lack of initiation Poor nutrition during infancy Breastfeeding: exclusively at six months of age Infants not receiving immunizations Environmental exposures Poor nutrition during infancy Access to health care Not having health insurance Infant abuse and neglect Infants not receiving immunizations Developmental delays Poor nutrition during infancy Low attendance at well-baby visits Low attendance at well-baby visits Environmental exposures 9 Environmental exposures Developmental delays 10 Neonatal abstinence/withdrawal Breastfeeding: lack of initiationc Neonatal abstinence/withdrawalc 8 Hispanic (n = 47)a Breastfeeding: exclusively at six months of age Birth defects Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 9th Infant Health Domain – Participant Role Rankb 1 2 3 4 5 6 7 8 9 10 Community Members/Parents (n = 174)a Clinicians/Public Health Professionals (n = 337)a Access to health care Infants not receiving immunizations Infant abuse and neglect Not having health insurance Poor nutrition during infancy Developmental delays Environmental exposures Breastfeeding: through 1 year of age Breastfeeding: exclusively at six months of age Breastfeeding: lack of initiation Infants not receiving immunizations Access to health care Not having health insurance Infant abuse and neglect Developmental delays Neonatal abstinence/withdrawal Breastfeeding: lack of initiation Environmental exposures Poor nutrition during infancy Breastfeeding: exclusively at six months of age Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 125 Infant Health Domain Infant Health Domain – Age Categories Rankb <25 Years (n = 42)a 25 – 34 Years (n = 146)a 35 – 44 Years (n = 110)a Infants not receiving immunizations Access to health care Access to health care Infants not receiving immunizations Infants not receiving immunizations Not having health insurance 1 Infant abuse and neglect 2 Infants not receiving immunizations 3 Access to health care 4 Poor nutrition during infancy 5 Not having health insurance Breastfeeding: exclusively at six months of age 6 Breastfeeding: lack of initiation Environmental exposures 7 Early term birth (birth between 38-39 weeks) 8 Birth defects 9 10 Breastfeeding: through 1 year of age Sudden Infant Death Syndrome (SIDS) Access to health care Not having health insurance Infant abuse and neglect Breastfeeding: lack of initiation Breastfeeding: through 1 year of age Safe Sleep guidelines not being followed Developmental delays Infant abuse and neglect Not having health insurance >44 Years (n = 161)a Infant abuse and neglect Developmental delays Developmental delays Breastfeeding: exclusively at six months of age Neonatal abstinence/withdrawal Environmental exposures Environmental exposures Poor nutrition during infancy Neonatal abstinence/withdrawal Breastfeeding: lack of initiation Poor nutrition during infancy Breastfeeding: lack of initiation Low attendance at wellbaby visits Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 126 Child Health Domain 2020 Maternal and Child Health Needs Assessment Survey Demographics for Child Health Domain (n = 812) n (%)a 8 41 24 251 39 8 26 138 28 1 54 14 19 41 8 120 (1.16) (5.92) (3.47) (36.27) (5.64) (1.16) (3.76) (19.94) (4.05) (0.14) (7.80) (2.02) (2.75) (5.92) (1.16) 86 525 1 5 195 (13.94) (85.09) (0.16) (0.81) 4 11 3 583 20 43 22 126 (0.58) (1.60) (0.44) (84.99) (2.92) (6.27) (3.21) 547 87 30 148 (82.38) (13.10) (4.52) 572 117 123 (83.02) (16.98) Participant Role (n = 692) b Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing Gender (nb = 617) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 686) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 664) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 689) Urban Rural Missing Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies (n’s) do not include missing 127 Child Health Domain Child Health Domain – Top 10 Ranked Issues (n = 812)a Rankb 1 2 3 4 5 6 7 8 9 10 Depression or other mental health problems Abuse and neglect Parental involvement Immunizations Access to safe preschool or child care Bullying Dental care Overweight/Obesity Air quality After school supervisionc Optimal nutritionc Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 10th Child Health Domain – Urban/Rural Rankb 1 2 3 4 5 6 7 8 9 10 Urban Respondents (n = 572)a Rural Respondents (n = 117)a Depression or other mental health problems Abuse and neglect Parental involvement Immunizations Access to safe preschool or child care Bullying Dental care Air quality Overweight/Obesity Optimal nutrition Depression or other mental health problems Parental involvement Abuse and neglect Access to safe preschool or child care Immunizations Bullying Dental care After school supervision Optimal nutrition Overweight/Obesity Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 128 Child Health Domain Child Health Domain – Race/Ethnicity Rankb Non-Hispanic White (n = 520)a Non-Hispanic Other (n = 26)a 1 Depression or other mental health problems Depression or other mental health problems 2 Abuse and neglect Immunizations 3 Parental involvement 4 6 Immunizations Access to safe preschool or child care Bullying 7 Overweight/Obesity Air quality 8 9 10 Dental care Optimal nutrition Air quality Bullying Acute & infectious diseases Environmental exposures 5 Access to safe preschool or child care Abuse and neglect Parental involvement Dental care Hispanic (n = 87)a Bullying Access to safe preschool or child care Dental care Abuse and neglect Depression or other mental health problems Immunizations Acute & infectious diseases (e.g., influenza, meningitis) Parental involvement Air quality Health and safety in child care Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. Child Health Domain – Participant Role Rankb 1 2 3 4 5 6 7 8 9 10 Community Members/Parents (n = 259)a Clinicians/Public Health Professionals (n = 433)a Bullying Depression or other mental health problems Abuse and neglect Access to safe preschool or child care Immunizations Parental involvement Dental care Optimal nutrition After school supervision Use of car seats and seatbelts Depression or other mental health problems Abuse and neglect Parental involvement Immunizations Access to safe preschool or child care Overweight/Obesity Dental care Bullying Optimal nutrition Air quality Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 129 Child Health Domain Child Health Domain – Age Categories Rankb <25 Years (n = 43)a 25 – 34 Years (n = 182)a 1 Dental care Abuse and neglect 2 Abuse and neglect Depression or other mental health problems Parental involvement Depression or other mental health problems Access to safe preschool or child care 3 4 Bullying 5 Immunizations Immunizations 6 Parental involvement Bullying 7 Overweight/Obesity 8 Physical education 9 Optimal nutritionc Access to safe preschool or child carec Optimal nutrition Use of car seats and seatbelts After school supervision 10 Sexual health education 35 – 44 Years (n = 186)a >44 Years (n = 215)a Depression or other mental health problems Abuse and neglect Depression or other mental health problems Abuse and neglect Parental involvement Parental involvement Bullying Immunizations Immunizations Access to safe preschool or child care Access to safe preschool or child care Air quality Bullying Dental care Optimal nutrition Overweight/Obesity Overweight/Obesity After school supervision Chronic disease/conditionsd Air quality Dental cared After school supervisiond Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 9th dTied for rank at 10th 130 Children with Special Health Care Needs Domain 2020 Maternal and Child Health Needs Assessment Survey Demographics for Children With Special Health Care Needs Domain (n = 423) n (%)a 2 20 12 175 13 10 17 27 39 1 32 12 18 12 2 33 (0.51) (5.13) (3.08) (44.87) (3.33) (2.56) (4.36) (6.92) (10.00) (0.26) (8.21) (3.08) (4.62) (3.08) (0.51) 59 285 1 3 75 (16.95) (81.90) (0.29) (0.88) 1 5 14 346 10 9 1 38 (0.26) (1.30) (3.64) (89.87) (2.60) (2.34) (0.26) 329 27 20 47 (87.50) (7.18) (5.32) 320 67 36 (82.69) (17.31) Participant Role (n = 390) b Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing Gender (nb = 348) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 385) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 376) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 387) Urban Rural Missing Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies (n’s) do not include missing 131 Children with Special Health Care Needs Domain Children with Special Health Care Needs Domain – Top 10 Ranked Issues (n = 423)a Rankb 1 2 3 4 5 6 7 8 9 10 Community resources and services Autism spectrum disorder Care coordination Early intervention services Health insurance Mental health Developmental screening Violence, abuse, or neglect Suicide Bullying Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. Children with Special Health Care Needs Domain – Urban/Rural Rankb 1 2 3 4 5 6 Urban Respondents (n = 320)a Rural Respondents (n = 67)a Community resources and services Autism spectrum disorder Early intervention services Bullying Family support groups or network Care coordination 8 9 Community resources and services Autism spectrum disorder Health insurance Care coordinationc Mental healthc Early intervention services Collaborative decision making (between parents & providers and/or adolescent & providers) Transition to adulthood information (14-22 years) Family support groups or network 10 Violence, abuse, or neglect 7 Child care or supervised care Violence, abuse, or neglect Mental health Collaborative decision making (between parents & providers and/or adolescent & providers) Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 4th 132 Children with Special Health Care Needs Domain Children with Special Health Care Needs Domain – Race/Ethnicity Rankb Non-Hispanic White (n = 317)a Community resources and services 1 Autism spectrum disorder 2 3 Care coordination 4 Mental health 5 Early intervention services 6 Health insurance 7 8 9 10 Transition to adulthood information Collaborative decision making Family support groups or network Violence, abuse, or neglect Non-Hispanic Other (n = 10)a Care coordinationc Early intervention servicesc Impact of childs health on familyd Health insuranced Community resources and services Family support groups or network Violence, abuse, or neglect Oral/Dental health Mental health Suicide Hispanic (n = 27)a Community resources and services Bullying Health insurance Collaborative decision making (between parents & providers and/or adolescent & providers) Autism spectrum disorder Housing Health care servicese Impact of childs health on familye Care coordination Developmental screening Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 1st dTied for rank at 3rd eTied for rank at 7th Children with Special Health Care Needs Domain – Participant Role Rankb 1 2 3 4 5 6 Community Members/Parents (n = 111)a Clinicians/Public Health Professionals (n = 279)a Community resources and services Autism spectrum disorder Health insurancec Early intervention servicesc Bullying Family support groups or network 7 Violence, abuse, or neglect 8 9 10 Mental health Care coordination Transition to adulthood information (14-22 years) Child care or supervised care Community resources and services Autism spectrum disorder Care coordination Mental health Early intervention services Health insurance Collaborative decision making (between parents & providers and/or adolescent & providers) Transition to adulthood information (14-22 years) Family support groups or network Violence, abuse, or neglect Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 3rd 133 Children with Special Health Care Needs Domain Children with Special Health Care Needs Domain – Age Categories Rankb <25 Years (n = 30)a 1 Oral/Dental health 2 Violence, abuse, or neglect 3 Bullying 4 Health insurance Family support groups or network Autism spectrum disorder 5 6 7 Child care or supervised care 8 Care coordination 9 Birth defectsc 10 Transition to adulthood information (14-22 years)c 25 – 34 Years (n = 70)a 35 – 44 Years (n = 86)a >44 Years (n = 165)a Community resources and services Autism spectrum disorder Early intervention services Mental health Community resources and services Early intervention services Autism spectrum disorder Care coordination Family support groups or network Community resources and services Autism spectrum disorder Health insurance Health insurance Health insurance Violence, abuse, or neglect Care coordination Child care or supervised care Collaborative decision making (between parents & providers and/or adolescent & providers) Family support groups or network Mental health Bullying Collaborative decision making (between parents & providers and/or adolescent & providers)c Impact of childs’ health on familyc Mental health Care coordination Early intervention services Transition to adulthood information (14-22 years) Impact of childs’ health on family Developmental screening Bullying Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 9th dTied for rank at 3rd 134 Adolescent Health Domain 2020 Maternal and Child Health Needs Assessment Survey Demographics for Adolescent Health Domain (n = 609) n (%)a 1 1 36 22 244 35 6 27 59 21 2 50 15 30 22 (0.18) (0.18) (6.30) (3.85) (42.73) (6.13) (1.05) (4.73) (10.33) (3.68) (0.35) (8.76) (2.63) (5.25) (3.85) 99 404 1 3 102 (19.53) (79.68) (0.20) (0.59) 2 9 0 495 20 20 18 45 (0.35) (1.60) (0.00) (87.77) (3.55) (3.55) (3.19) 470 44 26 69 (87.04) (8.15) (4.81) 464 102 43 (81.98) (18.02) Participant Role (n = 571) b Adolescent or Youth Childcare/ Daycare Facility or Staff Community-Based Organization or Community Health Center Staff Member Community Member Healthcare Professional Local Public Health Staff Other Maternal & Child Health Worker Other State Agency Staff Parent/Guardian of an Infant, Child, or Adolescent Parent/Guardian/Advocate of a Child with Special Health Needs Policymaker UDOH (Utah Department of Health) Staff University Faculty University Student Woman of Reproductive Age Missing 38 Gender (nb = 507) Male Female Intersex or Other Prefer not to answer Missing Race (nb = 549) American Indian, Native American, or Alaska Native Asian American or Asian Black, African American, or African White or Caucasian Multiple Races Other Prefer not to answer Missing Ethnicity (nb = 540) Non-Hispanic Hispanic or Latino Prefer not to answer Missing Respondent Residence (nb = 566) Urban Rural Missing Note. English survey open from March 15, 2019 – April 15, 2019; Spanish Survey open from April 11, 2019 – May 14, 2019 aPercentages calculated on valid n (does not include missing) bFrequencies (n’s) do not include missing 135 Adolescent Health Domain Adolescent Health Domain – Top 10 Ranked Issues (n = 609)a Rankb 1 2 3 4 5 6 7 8 9 10 Depression or other mental health problems Suicide Bullying Sexual health education Suicidal ideation Drug use Social isolation Abuse and neglect Overweight/Obesity Alcohol use Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. Adolescent Health Domain – Urban/Rural Rankb 1 2 3 4 5 6 7 8 9 10 Urban Respondents (n = 464)a Rural Respondents (n = 102)a Depression or other mental health problems Suicide Bullying Sexual health education Suicidal ideation Drug use Social isolation Abuse and neglect Overweight/Obesity Alcohol use Depression or other mental health problems Bullying Suicidal ideation Suicide Sexual health educationc Drug usec Social isolation Marijuana use Alcohol use Abuse and neglect Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 5th 136 Adolescent Health Domain Adolescent Health Domain – Race/Ethnicity Rankb 1 2 3 4 5 6 7 8 9 10 Non-Hispanic White (n = 448)a Non-Hispanic Other (n = 21)a Hispanic (n = 44)a Depression or other mental health problems Suicide Suicidal ideation Bullying Sexual health education Drug use Social isolation Abuse and neglect Overweight/Obesity Alcohol use Depression or other mental health problems Suicide Drug use Bullying Alcohol use Sexual health education Overweight/Obesityc Abuse and neglectc Chronic disease/conditions Social isolation Depression or other mental health problems Bullying Drug use Suicide Sexual health education Abuse and neglect Social isolation Alcohol use Dental care Overweight/Obesityd After school supervisiond Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. cTied for rank at 7th cTied for rank at 10th Adolescent Health Domain – Participant Role Rankb 1 2 3 4 5 6 7 8 9 10 Community Members/Parents (n = 158)a Clinicians/Public Health Professionals (n = 413)a Depression or other mental health problems Suicide Suicidal ideation Sexual health education Bullying Drug use Social isolation Abuse and neglect Overweight/Obesity Alcohol use Depression or other mental health problems Bullying Drug use Sexual health education Suicide Social isolation Suicidal ideation Abuse and neglect Overweight/Obesity Alcohol use Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 137 Adolescent Health Domain Adolescent Health Domain – Age Categories Rankb 1 2 3 4 5 6 7 8 9 10 <25 Years (n = 44)a 25 – 34 Years (n = 141)a 35 – 44 Years (n = 186)a >44 Years (n = 228)a Depression or other mental health problems Dental care Suicide Bullying Abuse and neglect Sexual health education Drug use Teen pregnancy Access to contraceptives Marijuana use Depression or other mental health problems Sexual health education Suicide Bullying Drug use Suicidal ideation Social isolation Access to contraceptives Alcohol use Abuse and neglect Depression or other mental health problems Bullying Suicidal ideation Sexual health education Drug use Suicide Social isolation Overweight/Obesity Abuse and neglect Marijuana use Depression or other mental health problems Suicide Suicidal ideation Bullying Social isolation Drug use Sexual health education Alcohol use Abuse and neglect Overweight/Obesity Note. aNumber of domain respondents who ranked issues from 1 to 7 bRanked following weighting of frequency items were selected at each ranking level from 1 to 7 then added together. i.e. (n ranked 1st x 7) + (n ranked 2nd x 6) + . . . (n ranked 7th x 1) = weighted n. 138 Attachment F Children with Special Healthcare Needs Parent Survey, Utah, 2019 139 n (%)a 45 788 226 57 13 7 4 21 (3.9) (69.1) (19.8) (5.0) (1.1) (0.6) (0.4) 140 452 381 331 117 11 112 8 223 211 119 524 108 106 124 129 351 284 57 2 158 154 91 127 17 74 63 180 (12.1) (38.9) (32.8) (28.5) (10.1) (0.9) (9.6) (0.7) (19.2) (18.2) (10.2) (45.1) (9.3) (9.1) (10.7) (11.1) (30.2) (24.5) (4.9) (0.2) (13.6) (13.3) (7.8) (10.9) (1.5) (6.4) (5.4) (15.5) 38 447 54 754 32 62 (3.3) (38.5) (4.7) (64.9) (2.8) (5.3) Q1. How many children in your household have special health care needs? (nb = 1140) 0 1 2 3 4 5 6 Missing Q2. Which of the following applies to your child? (check all that apply) (n = 1161) Adverse Childhood Experiences (ACEs) or Trauma Autism Spectrum Disorder (ASD) Attention Deficit Disorder (ADD) or Attention Deficit / Hyperactive Disorder (ADHD) Behavioral Concern Birth Defect Blood Disorder Brain Injury Cancer Chromosomal / Genetic Defect Communication Disorder Deaf / Hard of Hearing Developmental Delay Dental / Oral Health Concern Endocrine, Metabolic, or Nutritional Disorder Foster Care / Adoption Heart Disease / Congenital Heart Defect Intellectual Disability Mental Health Concern Neuromuscular Disorder Organ Transplant Physical Disability Prematurity / Birth Complications Respiratory Disorder Seizures / Epilepsy Substance Use Disorder Visually Impaired / Blind Unknown Diagnosis Other (please specify) Q3. What is your child's health insurance(s)? (check all that apply)d (n = 1161) Children Health Insurance Program (CHIP) Medicaid or Medicaid Waiver Insurance purchased through the health insurance exchange Private or Commercial No health insurance Other (please specify) a Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing b 140 n Q4. State your level of agreement: "My child’s health insurance covers all health care needs." (check one) (nb = 1151) Strongly Agree Agree Neutral Disagree Strongly Disagree Missing 201 360 184 274 132 10 (%)a (17.5) (31.3) (16.0) (23.8) (11.5) Q5. Does your child have a primary health care provider for ongoing health care needs? (check one) (nb = 1131) Yes No Missing 1000 133 28 (88.3) (11.7) Q6. Did your child have difficulties accessing any health care providers? (check one) (nb = 1131) Yes No Unsure Missing 298 783 52 28 (26.3) (69.1) (4.6) Results for Questions 7 and 8 are limited to, and only reflect responses from individuals who selected ‘Yes’ to having difficulties accessing any health care providers (Question 6). (n = 298, 26.3%) Q7. Which of the following health care providers did your child have difficulty accessing?c (check all that apply)d (n = 296) Audiologist Behavioral Therapist Dentist / Orthodontist Mental Health Provider Pediatric Specialists Opthamologist / Optometrist Physical, Occupational, or Speech Therapist Primary Care Provider Not applicable Other (please specify) Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 6 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 21 118 37 131 96 19 99 52 3 40 (7.0) (39.6) (12.4) (44.0) (32.2) (6.4) (33.2) (17.4) (1.0) (13.4) 141 n (%)a Q8. Which of the following was the main reason your child had difficulty accessing the above health care providers?c (check one) (nb = 292) Provider not available Insurance did not cover Could not afford No available appointments Put on a waiting list Distance to travel was too far Not eligible Not applicable Other (please specify) Missing 57 94 33 30 38 17 4 3 16 6 (19.5) (32.2) (11.3) (10.3) (13.0) (5.8) (1.4) (1.0) (5.5) Q9. Does your child's primary health care provider help with any of the following? (check all that apply)d (n = 1161) Appeal process for denials from health insurance Arranging appointments to specialists when needed Care coordination Connecting your family with services, agencies, and other health care providers Family support needs School issues such as IEPs or 504s None of the above 128 416 243 385 159 159 427 (11.0) (35.8) (20.9) (33.2) (13.7) (13.7) (36.8) Q10. State your level of agreement: "It would be helpful if my child's immunization information and newborn screening results were provided to me in one combined health record." (check one) (nb = 1091) Strongly Agree Agree Neutral Disagree Strongly Disagree Missing 595 300 186 6 4 70 (54.5) (27.5) (17.0) (17.0) (0.5) Q11. Did your child have difficulties accessing any equipment or prescriptions? (check one) (nb = 1131) Yes No Unsure Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 6 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 327 720 45 69 (29.9) (65.9) (4.1) 142 n (%)a Results for Questions 12 and 13 are limited to, and only reflect responses from individuals who selected ‘Yes’ to having difficulties accessing equipment or prescriptions (Question 11). (n = 327, 29.9%) Q12. Which of the following equipment or prescriptions did your child have difficulty accessing?c (check all that apply)d (n = 327) Communication aids or devices Durable medical equipment (DME) Hearing aids Vision aids Mobility aids or devices Prescription medications Not applicable Other (please specify) 37 69 23 26 39 235 5 30 (11.3) (21.1) (7.0) (8.0) (11.9) (71.9) (1.5) (9.2) Q13. Which of the following was the main reason your child had difficulty accessing the above equipment or prescriptions?c (check one) (nb = 327) Equipment not available Insurance did not cover Could not afford Put on a waiting list Distance to travel was too far Not eligible Lack of provider coordination Not applicable Other (please specify) Missing 7 160 61 6 4 4 39 4 35 7 (2.2) (50.0) (19.1) (1.9) (1.3) (1.3) (12.2) (1.3) (10.9) 397 605 79 80 (36.7) (56.0) (7.3) Q14. Did your child have difficulties accessing any services? (check one) (nb = 1081) Yes No Unsure Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 11 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 143 n (%)a Results for Questions 15 and 16 are limited to, and only reflect responses from individuals who selected ‘Yes’ to having difficulties accessing any services (Question 14). (n = 397, 36.7%) Q15. Which of the following services did your child have difficulty accessing?c (check all that apply)d (n = 397) After school programs ABA therapy Care coordination Community groups that work to improve services Parent support groups Home health care Recreational and social opportunities Respite care Dental care Transition to adult services Not applicable Other (please specify) 94 132 65 65 64 48 149 134 51 33 24 92 (23.7) (33.2) (16.4) (16.4) (16.1) (12.1) (37.5) (33.8) (12.8) (8.3) (6.0) (23.2) Q16. Which of the following was the main reason your child had difficulty accessing the above services?c (check one) (nb = 394) Service not available Insurance did not cover Could not afford Put on a waiting list Distance to travel was too far Not eligible Lack of provider coordination Not applicable Other (please specify) Missing 69 104 56 64 15 15 18 17 36 3 (17.5) (26.4) (14.2) (16.2) (3.8) (3.8) (4.6) (4.3) (9.1) Q17. Did your child receive care coordination from someone other than the parent respondent? (check one) (nb = 1051) Yes No Unsure Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 14 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 386 619 46 110 (36.7) (58.9) (4.4) 144 n Q18. Other than the respondent, which was the main source or you child’s care coordination? (check one) (nb = 421) Primary Health Care Provider (medical home) or Pediatric Specialist Local or State Health Department Community group Health insurance provider care coordinator Other (please specify) Missing 205 48 21 21 205 740 (%)a (48.7) (11.4) (5.0) (5.0) (29.9) Q19. Did your child receive evaluation / diagnostic services from a Local or State Health Department? (check one) (nb = 1033) Yes No Unsure Missing 237 735 61 128 (22.9) (71.2) (5.9) Q20. If you live over 2 hours from Salt Lake City and want evaluation/diagnostic services for your child, which of the following are you most likely to do? (check one) (nb = 1029) Make a telehealth appointment Travel to Salt Lake City for services Contact your Local Health Department Contact your primary health care provider (medical home) None of the above Not applicable Other (please specify) Missing 16 210 30 143 25 589 16 132 (1.6) (20.4) (2.9) (13.9) (2.4) (50.7) (1.6) Q21. Do you have at least one child with special health care needs in your household who is 12 years or older? (check one) (nb = 1031) Yes No Missing 467 564 130 (45.3) (54.7) Results for Questions 22 - 25 are limited to, and only reflect responses from individuals who selected ‘Yes’ to having a CSHCN who is 12 years or older (Question 21). (n = 467, 45.3%) Q22. State your level of agreement: "I feel prepared for my child’s transition to adulthood.”c (check one) (nb = 459) Strongly Agree Agree Neutral Disagree Strongly Disagree Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 21 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 12 64 107 170 106 8 (2.6) (13.9) (23.3) (37.0) (23.1) 145 n (%)a Q23. Who helped prepare for your child’s transition to adulthood?c (check one) (n = 467) Myself / My partner and I Family / Friends Primary Health Care Provider (medical home) Family support group Care Coordinator My School / School District No one has helped me / us prepare I / We have not prepared Other (please specify) 303 85 52 30 39 170 78 98 57 (64.9) (18.2) (11.1) (6.4) (8.4) (36.4) (16.7) (21.0) (12.2) c d Q24. Which of the following transition topics have you prepared for? (check all that apply) (n = 467) Educational plans 176 (37.7) Employment plans 108 (23.1) Financial needs 106 (22.7) Health insurance plans 99 (21.2) Independent living plans 48 (10.3) Legal needs 104 (22.3) Medical needs 121 (25.9) Social needs 66 (14.1) Transportation needs 71 (15.2) I / We have not prepared 121 (25.9) None of the above 70 (15.0) Other (please specify) 27 (5.8) Q25. Which of the following would help you feel more prepared for your child's transition to adulthood?c (check all that apply)d (nb = 467) Help from my child's / children's health care provider A website A paper document (booklet or checklist) Help from a person who is an expert A training session (online or in person) Help from other parents of children with special health care needs Help from my community Help from family members and / or friends Time to prepare Information on programs offering financial assistance Other (please specify) Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing c Restricted to respondents who responded ‘Yes’ to Question 21 d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 143 169 195 326 258 228 137 103 143 275 33 8 (30.6) (36.2) (41.8) (69.8) (55.2) (48.8) (29.3) (22.1) (30.6) (58.9) (7.1) 146 n Q26. Other than your primary health care provider, where do you seek health information? (check all that apply)d (n = 1161) Social media (i.e. Facebook, Twitter, Pinterest) Internet (i.e Google, Yahoo, Bing) State / Local Health Department Library Disability and family organizations In person family support groups Online family support groups Family / Friends Other (please specify) 306 749 195 121 446 119 320 475 91 (%)a (26.4) (64.5) (16.8) (10.4) (38.4) (10.2) (27.6) (40.9) (7.8) Q27. Rank in order social media you would most likely use to seek health information: 1 – Most Likely 2 3 4 5 – Least Likely n Facebook 361 105 37 35 31 (%)a (63.4) (18.5) (6.5) (6.2) (5.4) Instagram n 24 174 158 72 29 (%)a (5.3) (38.1) (34.6) (15.8) (6.4) n 16 24 97 173 129 Twitter (%)a (3.6) (5.5) (22.1) (39.4) (29.4) n Pinterest 35 124 112 112 105 (%)a (7.2) (25.4) (23.0) (23.0) (21.5) Q28. State your level of agreement: "I would call a hotline for health information." (check one) (nb = 996) Strongly Agree Agree Neutral Disagree Strongly Disagree Missing 132 299 304 186 75 165 (13.3) (30.0) (30.5) (18.7) (7.5) Q29. What is the best method to receive information from the Utah Department of Health (check one) (nb = 1002) Information hotline Mailed letter Social media WIC clinic Webinar Phone call Health fair In person / face-to-face Email Text messaging Other (please specify) Missing 34 154 75 24 34 77 18 134 346 74 32 159 (3.4) (15.4) (7.5) (2.4) (3.4) (7.7) (1.8) (13.4) (34.5) (7.4) (3.2) Q30. Thinking of your family, what is the top challenge impacting your child / children with special health care needs? Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b 147 n (%)a 120 118 18 12 5 21 17 269 67 489 (10.3) (10.2) (1.6) (1.0) (0.4) (1.8) (1.5) (23.2) (5.8) (42.1) Q31. Do you participate in any of the following programs? (check all that apply)d (n = 1161) Women, Infants, and Children Program (WIC) Baby Watch Early Intervention Program (BWEIP) Fostering Healthy Children Program Integrated Services Program Oral Health Program Organ Donation Fund Children's Hearing Aid Program (CHAP) Utah Family Voices / Utah Parent Center Help Me Grow Help Me Grow None of the above Q32. If there is anything we haven't addressed, please share what else you would like us to know. Q33. What is your zipcode? Q34. What is your county? Q35. How would you identify yourself? (check one) (nb = 985) Mother Father Guardian Foster Parent Adolescent or Youth Advocate of a child with special health care needs Other (please specify) Missing 891 46 11 11 1 10 15 176 (90.5) (4.7) (1.1) (1.1) (0.1) (1.0) (1.5) 81 895 185 (8.3) (91.7) 906 2 11 6 6 30 19 181 (92.4) (0.2) (1.1) (0.6) (0.6) (3.1) (1.9) 110 144 210 281 224 192 (11.4) (14.9) (21.7) (29.0) (23.1) Q36. What is your ethnicity? (check one) (nb = 976) Hispanic / Latino Non-Hispanic / Latino Missing Q37. What is your race? (check one) (nb = 980) White or Caucasian Black or African American Asian or Asian American American Indian or Alaska Native Native Hawaiian or other Pacific Islander Multiple races Other (please specify) Missing Q38. What was your household income in 2018? (check one) (nb = 969) Under $20,000 Between $20,000 and $39,999 Between $40,000 and $59,999 Between $60,000 and $99,999 Over $100,000 Missing Percentages calculated on valid n (does not include missing) Frequencies (n’s) do not include missing d Percentages and frequencies are not an indication of prevalence, ranking, or preference in sample a b