Iowa’s Title V program continues to evaluate programs and processes, and strives to include family input into all activities, including the assessment of needs and priorities. Iowa’s Title V Family Delegate was a core member of the Needs Assessment team. The Title V plans and Needs Assessment process are presented for feedback from the Maternal and Child Health Advisory Council (MCH Advisory Council) which includes multiple youth and family representatives. Additionally, the University of Iowa Health Care Division of Child and Community Health Family and Professional Partnership Program provides regular feedback to ensure that the strategic plans for the Family Partnership program and the Title V CYSHCN program are aligned with the needs articulated by Iowa families. The Family Advisory Council (FAC) provides review of the block grant initiatives and members of Title V CYSHCN program and FAC leadership are trying to strengthen the role of family advisors in providing input to all Title V CYSHCN program activities, including the Title V Block Grant.

Iowa HHS Health Equity Assessment

Iowa HHS conducted a health equity assessment that consisted of an internal analysis of current health equity initiatives and current capacity of the workforce to address health equity. This assessment included a thorough review of documents, an all-staff survey, staff focus groups, and key informant interviews with leadership. The needs assessment also analyzed Iowa HHS capacity and need for specific areas necessary for health equity work, such as community engagement and data methodology. The final report will identify opportunities for improvement and expansion and will include actionable roadmaps for programs to embed health equity into their work. The Bureau of Health Equity will utilize findings to create additional trainings to address these skills gaps, which may include: disaggregating data, data equity in communications, authentic community engagement, or other key topics.

The all-staff assessment focused on the three dimensions below:

Initial results before final report is completed and released have been shared through a Department-wide All Staff meeting. Below are the overall results on each of the elements outlined above:

Title V staff have had a strong commitment to Health Equity for many years. Title V staff are prepared to work with the Bureau of Health Equity to share existing programmatic successes/strategies as well as learn new innovative approaches Iowa’s Title V program can embed Health Equity at both the state and local levels.

Maternal Health

Iowa systematically reviews population and programmatic data for each population domain. Based on these reviews, Iowa HHS updates state action plans and ESMs to best address the most current data. The next section provides an update to the maternal health population needs assessment based on the national and state focus on maternal health initiatives.

Iowa is a predominantly rural state with approximately 3.2 million people according to the US Census Bureau. Agriculture and related industries are the main sources of employment. Based on metropolitan statistical areas, sixty-one of Iowa’s ninety-nine counties are designated as rural, sixteen are designated as micropolitan, and twenty-two are designated as metropolitan.[1] Although Iowa’s unemployment rate is generally low, the 2022 American Community Survey reports the percentage of Iowans living below the federal poverty level (FPL) was 11%, an increase from 9.1% in 2000. Nearly one-quarter (23.5%) of female-headed households in Iowa live below the FPL. There are currently 56 hospitals in Iowa providing maternity services and there were 34,558 births in 2022. Table 1 provides an overview of the birthing population in the state by key social and health characteristics.3 Iowa’s birthing population also has a high prevalence of chronic and pregnancy-related diseases that make pregnancy and childbirth high risk, including overweight and obesity, hypertensive conditions, and diabetes.

Iowa’s 2019 MHI award was highly successful in development of pipelines for training new obstetrical providers including rural-focused OBGYNs, FM-OBs, and CNMs in Iowa. The IMQCC was established and a diverse board of stakeholders were recruited to form Iowa’s Maternal Health Task Force. Iowa joined the AIM program, conducted several successful AIM QI collaboratives, and initiated a mobile simulation-based education program that primarily serves rural and low-volume facilities to maintain preparedness for obstetrical emergencies.

However, like many states, Iowa is experiencing shifts in population health that make pregnancy and childbirth increasingly high-risk, creating a further demand to elevate care and services to the birthing population. Simultaneously, the obstetrical workforce, particularly in rural areas, remains vulnerable to shortages and inexperience that make units vulnerable to closure. Through the process of developing and implementing these programs, additional opportunities to improve the quality and safety of maternity care and support the rural obstetrical workforce have been identified.

Challenge #1: Increasing pregnancy-related morbidity and mortality, disparities, and social determinants of health experienced by Iowa’s birthing population.

Iowa was historically a state with good health outcomes for mothers and children, however, there has been an increase in pregnancy-related maternal mortality, which is not entirely attributable to deaths from COVID-19 infection, as shown in Figure 2.[2] Furthermore, 95% of recent cases were thought to have been preventable or possibly preventable by the MMRC. 58% of those of died from pregnancy-related causes were insured under Medicaid for their pregnancy care, reflecting an economic disparity as only 42% of pregnancies are covered by Medicaid in the state. The distribution of timing of pregnancy-related deaths in Iowa between 2019-2021 is shown in Figure 3, demonstrating a high proportion of postpartum deaths.

Maternal deaths reflect systemic challenges and for every person who dies of pregnancy-related causes, many more suffer severe complications. Iowa has higher rates of SMM than the US and there are significant disparities by race, ethnicity, primary payment source, and where people live. For nearly all groups, SMM was higher in 2020-2022 than in 2017-2019, suggesting an ongoing need to elevate the quality of care being received across the state and particularly for rural residents, those with public insurance (Medicaid), and racial minorities (Figure 4).[3]

Infection (including COVID-19), cardiovascular disease, thrombotic embolism, hemorrhage, and mental health conditions were the leading causes of pregnancy-related mortality in Iowa from 2019-2021. Of note, an additional 11% of pregnancy-associated, but not related, deaths were attributed to mental health conditions. Similarly, disseminated intravascular coagulation (a late complication of hemorrhage), respiratory distress syndrome, shock, heart failure, eclampsia, and sepsis are the leading SMM indicators. While statewide implementation of AIM PSBs focused on reducing harm from obstetric hemorrhage and severe hypertension (including preeclampsia and eclampsia) in pregnancy has been successful, there is a continuing need to improve care to address additional leading morbidity and mortality indicators in the state.

Challenge #2: New destination communities of non-English speaking people are receiving less adequate prenatal care and are vulnerable to SMM and mortality.

Rural states in the Midwest and US South have been described as "new destinations" for immigrants. Immigration to Iowa was primarily driven by Latin American migration in the 1990s and early 2000s, and now includes immigration from Africa, southeast Asia, Pacific Islands and beyond. Migration to rural communities is centered around agricultural processing or light manufacturing, creating conditions for "microdiversity" where small communities become home to people of dozens of nationalities. One Iowa community, home to a pork processing plant, recently reported having 32 different languages spoken among students in their small school district. Statewide, 8.8% of births occur to people who do not identify English as their primary language; these births are primarily concentrated in specific areas, Figure 5.2

While small communities may rely on immigrant labor to keep industries afloat, they frequently struggle to meet the healthcare needs of immigrants and their families. Perinatal care is a vital need for immigrant communities as many are of reproductive age and may have risk factors for high-risk pregnancies. However, migrant birthing parents face numerous challenges to accessing timely and appropriate perinatal care such as financial, linguistic, cultural, and transportation barriers. In Iowa there is significantly higher rates of inadequate prenatal care among non-English speaking parents, Table 2.[4]

Health disparities experienced by migrant populations are affected by structural barriers within the healthcare system, such as lack of cultural humility, lack of access to insurance, and mistrust between patients and providers. For 12% of Iowa’s recent pregnancy-related deaths, the MMRC cited communication (either language or cultural differences) as directly contributing to the death. With immigrant populations on the rise in Iowa, there is a critical need to equip health systems across to meet the needs of our increasingly diverse communities, especially counties where there is a large proportion of immigrant families. In the absence of these critical improvements, immigrant families will continue to experience inequitable access to quality maternal healthcare, leading to a disproportionate burden of adverse maternal health outcomes.

Challenge #3: Rural facility closures and unique challenges for low-volume facilities threaten to further worsen outcomes for rural residents.

Iowa has experienced the closure of over 40 obstetrical units since 2000 and the March of Dimes currently classifies 33 of Iowa’s counties are maternity care deserts.[5] The actual distance traveled to give birth has increased in several areas, and there are regions where the average travel time to give birth exceeds 60 minutes, Figure 6.[6] Since 2019, an additional five obstetrical units have closed in Iowa. Of the 56 remaining facilities, nearly half (25) have fewer than 250 annual births. The distribution of hospitals by annual delivery volume is shown in Table 1. As a largely rural state, there is an inherent tradeoff between geographic access to care and hospital volume. Facilities with low volume are vulnerable to closure due to challenges with staffing, finances, and maintaining staff experience to provide safe care. The minimum volume for a facility to provide safe care and remain financially viable is unknown but has been estimated by rural hospital administrators to be at least 200.[7]

Statewide QI collaboratives, as are offered here in Iowa for AIM PSBs and are occurring around the country, are effective at improving population health outcomes and reducing disparities.[8] In many states these collaboratives focus on high-volume, urban centers as that is where most births occur. Iowa is unique in that nearly half of the births in the state (43%) occur in facilities with fewer than 1000 annual births that are mostly located in rural and micropolitan communities (Table 1). The lowest volume hospitals also have higher rates of SMM, primarily driven by rates of blood transfusion suggesting vulnerability to hemorrhage and its sequela, Figure 7. This illustrates the need to support safe practices in lower volume facilities.

Lower volume facilities face unique challenges in performing QI activities. Frequently nurse managers of these units are “working managers” meaning they spend a large portion of their time staffing the unit and there are rarely dedicated educators or QI personnel. These leaders are less likely to have advanced degrees or formal training in nursing education, project management, or QI. In several facilities the manager of the maternity unit does not actually have maternity care experience. The cumulative effect of these factors is that many small facilities face challenges in educating their staff and performing unit-level QI. To reduce SMM, mortality, and health disparities in Iowa it is essential to support building capacity among the staff at the lowest volume facilities to perform QI.[9]

Challenge #4: The obstetrical workforce in Iowa’s rural communities is shrinking.

Iowa’s obstetrical workforce continues to shrink, threatening the viability of facilities and access to care. Specifically, number of delivering physicians overall and per capita is declining, Table 5.[10] OBGYNs attended the most births in our state (71%), followed by FM-OBs (14%), and CNMs (12%), however the distribution of providers varies significantly by rurality. FM-OBs attend most births in rural counties (64%) and the fewest in metropolitan counties (5%). OBGYNs attend most births in metropolitan counties (82%) and fewer in rural counties (27%). CNMs attend more births in metropolitan counties (14%) but do attend 9% of rural births.

A growing problem in our rural obstetrical workforce is the declining practice of obstetrics by FM physicians. FM physicians practicing obstetrics are critical to the vitality of many rural hospitals. One of the reasons cited for discontinuation of obstetrical practice is inability to maintain skills with a low-volume practice, leading to fear of adverse events and lawsuits.[11]

In addition to declining physician providers, rural areas struggle to maintain robust nursing staff with experience in perinatal care. In low-volume facilities nurses, like providers, have a multi-specialty practice, covering adult, pediatrics, operative, and maternity services, which poses challenges in maintaining expertise and skills. Individually and collectively, participating in fewer births results in limited exposure to obstetrical emergencies, making those that occur at high risk for preventable harm. The simulation program is one key strategy employed to support these teams in gaining experience with obstetrical emergencies, however ongoing training and education is necessary to ensure staff remain competent and prepared.

Challenge #5: Increasing community (home) birth in Iowa potentially threatens safety.

Community birth, also referred to as home or out of hospital birth, is increasing nationally and in Iowa. From 2019 to 2022, the number of community births in Iowa by CNMs increased by 66%. Births by unlicensed midwives have also increased and are expected to rise more with the passage of legislation that provides a pathway for Certified Professional Midwife (CPM) licensure in Iowa along with a mandate for insurance coverage of community birth, both of which will take effect in July 2024. Until 2012, births by unlicensed providers were considered a felony which kept this provision of care outside of the traditional healthcare system for pregnant Iowans. With the removal of that barrier, hospitals are now seeing an increase in the number of intrapartum and postpartum transfers from home to hospital. Statewide, hospital staff have reached out to IMQCC expressing safety concerns with the transfer process for planned community birth and reports of SMM events. Similarly, many community birth providers report experiences of hostility when transferring patients into the hospital, which may result in delayed transfer in emergencies, poor communication to the receiving team, and other unnecessary barriers. Models in other states suggest an opportunity for collaboration to achieve safe, patient-centered care.

Children and Youth with Special Health Care Needs

The Iowa Title V CYSHCN program assesses needs through the framework of the Blueprint for Change, guided by National Standards for Systems of Care for CYSHCN. The National Survey of Children’s Health is an ongoing source of population-based, family-reported data for Iowa’s Title V CYSHCN program. Other needs assessment activities include the annual Youth Services Survey for Families, sent to a sample of families who receive direct and enabling services through University of Iowa Health Care Division of Child and Community Health, conversations with members of the Family Navigator Network and the Family Advisory Council, and a review of ongoing activities of partner organizations such as the Developmental Disabilities Council, and internal programs such as the Regional Autism Assistance Program.

Changes in health status and need:

The top priority needs for Iowa’s Title V program were identified in the 2020 needs assessment as:

• Infusing Health Equity in the Title V System
• Access to care for the MCH population
• Maternal, Child, and Adolescent Health systems coordination
• Dental Delivery Structure
• Safe and Healthy Environments
• Access to community-based services and supports, pediatric specialty providers, and coordination of care
• Access to support for making necessary transitions to adulthood
• Support for parenting CYSHCN with mental health or complex health needs

The COVID-19 Public Health Emergency exacerbated the need to address all of these priority areas, especially access and parent support. Iowa’s Title V program including CYSHCN continued to provide support in all of these areas, including expanded access to in-home telehealth direct services and supports for families. For a large portion of 2020 and 2021, many Title V local and state program staff provided this care while working from home, or in reduced density work environments. Although day-to-day activities have resumed, the impact of this public health emergency lingers for staff and for families in Iowa.

The Iowa Title V CYSHCN program collects information from the Family Navigator Network about changes in issues and needs from families they are working with. The Family Advisory Council also provides information about the needs of families of CYSHCN. Mental health issues continue to be an issue for Iowa’s CYSHCN and provider shortages make access to care especially challenging, especially for children and youth in more rural areas of Iowa.

A family survey is part of the annual process for this 5-year Title V cycle for Child and Community Health programs. The Youth Services Survey for Families is a questionnaire that includes 26 questions with a 5-level Likert-type response scale ranging from ‘Strongly Agree’ to Strongly Disagree.’ Respondents are also given the option ‘Does not apply.’ The items in the questionnaire are grouped into 6 domains that pertain to the direct and enabling services provided through University of Iowa Health Care Division of Child and Community Health: Access, Participation in Treatment, Cultural Sensitivity, Satisfaction, Outcomes, and Social Connectedness. Domains contain between 2 and 6 questions, which are combined into a mean domain score. Additional questions cover basic demographic information: Gender, age-category, and race/ethnicity. Additionally, there are 3 open-ended questions, asking 1) What has been the most helpful thing about the services you and your child received as a result of services? 2) What would improve services for families who need support? and 3) Any other comments? The survey is administered annually in the spring. The table below shows the results from the 2021,2022, 2023, and 2024 surveys. A review of the data showed that scores were relatively high overall and have remained steady over time.

Youth Services Survey for Families, mean domain scores,2021, 2022,2023, and 2024 surveys

Iowa Title V CYSHCN program staff are in the early planning stages for the 2025 Needs Assessment. During FFY2023, program staff worked with AMCHP to develop a comprehensive evaluation plan for the Family Navigator Network. Implementation of this plan is currently underway.

Changes in capacity and MCH systems of care

Essential services for MCH priority populations were influenced in several ways during the 2024 Iowa legislative session.

There are a number of major changes anticipated by families of children and youth with special health care needs in the next few years. Over the past 2 years, Iowa HHS, primarily at the direction of Iowa Medicaid program leadership, has been seeking feedback from consultants, families, self-advocates, providers, and communities about Iowa’s Medicaid Home and Community-Based Services (HCBS) waiver programs. This process has been intentional and although the process is not yet complete, state leadership has provided a thoughtful vision about a waiver program overhaul.

University of Iowa Health Care Division of Child and Community Health has had a number of opportunities to provide comments and input into the waiver redesign process. Because the needs of children and families differ greatly from the needs of adults, program staff, along with a number of other groups, have emphasized the need to separate out child from adult waivers, with attention paid to ensuring smooth transitions from child to adult waivers. The new waiver redesign is not yet complete, but the most recent proposal shows a move from the 7 current waivers to 2 new waivers, one for Children & Youth ages 0–20 years, and another called Adults & Aging for ages 21 years or over.

Another major change is in the way special education services will be delivered. Iowa currently has 9 Area Education Agencies (AEAs) that have provided special education and other services to Iowa’s public and accredited private schools. During this year’s legislative session, the AEA system was overhauled with changes scheduled for implementation during the 2024–2025 school year. Although lawmakers were mindful of the impact of these changes on special education services, many families have expressed uncertainty about how these and other services such as technology distribution and crisis counselling will be delivered during the upcoming and future school years.

Breadth of Partnerships with other entities that serve the MCH population

Iowa’s Title V program works extensively with organizations such as the Iowa Departments of Management, Education, and with the now combined Health and Human Services. Coordination of services and ensuring Iowa’s most vulnerable families are receiving the needed services to succeed has been a cornerstone of these collaborations. The MCH program, including CYSHCN, has strong linkages within HHS Bureaus of Immunizations, Oral Health Section, Chronic Disease Prevention and Management, Vital Records & Health Statistics and Substance Abuse Prevention and Treatment programs. HHS’s Office of Disability, Injury & Violence Prevention supports state and local efforts to improve services for victims of domestic and sexual violence. HHS and University of Iowa Health Care Division of Child and Community Health appreciate many public-private partnerships with organizations such as Delta Dental of Iowa Foundation, the Iowa AAP, ChildServe, Blank Children’s Hospital, the Iowa Primary Care Association, the National Alliance on Mental Illness Iowa Chapter, Common Good Iowa, ASK Resource (Family Voices affiliate), the Autism Society of Iowa and a number of other health care providers and systems. Opportunities range from funding for school-based dental sealant programs, participation on health advisory councils, and evaluating program data.

The CYSHCN section of Title V also works with the Iowa Developmental Disabilities Council (DD Council) and is co-located and meets regularly with the University Center for Development and Disability (UCEDD), and the Iowa Leadership Education in Neurodevelopmental and Related Disabilities Project (LEND) programs. The Iowa Title V CYSHCN program has active collaborations within the University of Iowa Health Care Stead Family Children’s Hospital and Stead Family Department of Pediatrics, including the Division of Developmental Pediatrics and the Division of General Pediatrics. Other University of Iowa programs that Title V actively collaborates with include the Carver College of Medicine Departments of Psychiatry, Family Medicine, and the College of Public Health.

Operationalizing the 2021 Needs Assessment

FHB is currently in the process of reviewing and rewarding the FY2023 Title V Request for Applications (RFAs) The Title V Block Grant State Action Plans directly affect and dictate the development of requirements and activities outlined in the funding opportunity. Staff continue to use and update the 2021 Needs Assessment to ensure the needs of Iowa’s population are continuing to be met and continue to reduce barriers faced by families.

In order to further operationalize the Needs Assessment state Title V staff are continuing to utilize the findings to inform and programmatic changes including but not limited to the Maternal Health Strategic Plan and the CSAs discussed previously.

University of Iowa Health Care Division of Child and Community Health updated their strategic plan in 2021 with a focus on alignment between the needs of CYSHCN and families and the work that is carried out. Title V Priority areas are used as a basis to direct efforts within the program as well as to provide input to other organizations with shared goals.

Changes in organizational leadership

Iowa’s Title V for CYSHCN program is housed within University of Iowa Health Care Carver College of Medicine Stead Family Department of Pediatrics, Division of Child and Community Health.

Vanessa Curtis, MD, Title V CYSHCN Director, Division Director, Child and Community Health and Child Health Specialty Clinics, began leading University of Iowa Health Care Division of Child and Community Health in January 2024. In addition to leading the Division, Dr. Curtis is a practicing pediatric endocrinologist with over 13 years of experience treating children and youth with special health care needs. Dr. Curtis’s role includes teaching trainees and she served for the 5 years as Director of Iowa’s Pediatric Endocrine and Diabetes Fellowship program. In addition to clinical and teaching activities, she has been previously funded by NIH, industry, and national networks/foundations; her current research focuses on comparing the oral micro-biome in healthy obese adolescents to obese adolescents with metabolic syndrome.

[1] State Data Center. Business & Industry. Accessed March 1, 2024. https://www.iowadatacenter.org

[2] Iowa Department of Health and Human Services. Maternal Mortality Review Information Application (MMRIA, or “Maria”) is a data system designed to facilitate MMRC functions through a common data language. CDC, in partnership with users from the committees and other subject matter experts, developed the system. It is available to all MMRCs. Data used in this narrative is from the Iowa MMRC.

[3] Fink DA, Kilday D, Cao Z, et al. Trends in Maternal Mortality and Severe Maternal Morbidity During Delivery-Related Hospitalizations in the United States, 2008 to 2021. JAMA Netw Open. 2023;6(6):e2317641. Published 2023 Jun 1. doi:10.1001/jamanetworkopen.2023.17641

[4] Kotelchuck M. An evaluation of the Kessner adequacy of prenatal care index and a proposed adequacy of prenatal care utilization index. Am J Public Health. 1994;84(9):1414-1420. Doi:10.2105/ajph.84.9.1414.

[5] March of Dimes: Maternity Care Desserts. Accessed March 1, 2024. https://www.marchofdimes.org/peristats/reports/iowa/maternity-care-deserts.

[6] Carrel M, Keino BC, Ryckman KK, Radke S. Labor & delivery unit closures most impact travel times to birth locations for micropolitan residents in Iowa. J Rural Health. 2023;39(1):113-120. doi:10.1111/jrh.12643

[7] Kozhimannil KB, Interrante JD, Admon LK, Basile Ibrahim BL. Rural Hospital Administrators' Beliefs About Safety, Financial Viability, and Community Need for Offering Obstetric Care. JAMA Health Forum. 2022;3(3):e220204. Published 2022 Mar 25. doi:10.1001/jamahealthforum.2022.0204

[8] Main EK et al. Reduction in racial disparities in severe maternal morbidity from hemorrhage in a large-scale quality improvement collaborative. Am J Obstet Gynecol. 2020;223(1):123.e1-123e14. Doi:10.1016/j.ajog.2020.01.026.

[9] Anglim AJ, Radke SM. Rural Maternal Health Care Outcomes, Drivers, and Patient Perspectives. Clin Obstet Gynecol. 2022;65(4):788-800. doi:10.1097/GRF.0000000000000753

[10] Iowa Department of Health and Human Services - Bureau of Family Health. Access to Obstetrical Care in Iowa: A Report to the Iowa State Legislature – Calendar Year 2021. Des Moines: Iowa Department of Health and Human Services, 2023.

[11] Roberts RG, Bobula JA, Wolkomir MS. Why family physicians deliver babies. J Fam Pract. 1998 Jan;46(1):34-40..