III.C.2.a. Process Description
III.C.2.a. Process Description
Illinois’ 2020 Needs Assessment (NA) was conducted by the IL Title V (IDPH and UIC-DSCC), in collaboration with UIC School of Public Health’s Center of Excellence in Maternal and Child Health (CoE-MCH). The NA team included MCH and MCH Epidemiology faculty, public health students, and other researchers at the CoE-MCH.
IL Title V strives to be the “convener” of statewide MCH activities, bringing together key stakeholders to create a shared understanding of MCH needs and priorities, as well as promising strategies to address them. The intent of the robust NA process was to inform the direction of the Title V program for the next five years.
The NA team established a framework that included:
- Assessment of health status, service needs, and system capacity related to each population domain
- Development of 2021-2025 priorities
- Assessment of workforce and agency capacity
- Development of strategies and a final Action Plan
The process spanned 22 months and required extensive collection and analysis of primary and secondary data from a variety of sources. Also, there was a concerted effort to collect more qualitative data to address gaps in knowledge.
The mechanisms for gathering stakeholder input included:
- An Expert Panel (EP), with a nested Advisory Council (AC), of professional stakeholders to solicit feedback on the state’s MCH needs, priority selection, and strategy identification and to advise the overall process.
- Key Informant Interviews with Title V Leadership and staff to assess capacity and describe needs within in their programs.
- Consumer Listening Sessions with members of the Illinois MCH Family Council and School-Based Health Centers’ Youth Advisory Councils to identify emerging trends.
- Surveys designed and deployed to determine workforce capacity, assess partners’ views of Title V’s capacity, and gather consumer stakeholder input.
(Figure 1).
Step One: Assessment of Population Domain
Datasheets
To frame conversations and give context to the work of the IL Title V, the NA team provided information on several MCH indicators before convening stakeholders. The team created “datasheets” for each population domain using state and national performance and outcome measures (Appendix A). For each measure, the most current data available, the average annual percent change over the last five years, Illinois’ national rank, and an indicator of racial/ethnic disparity was presented.
Qualitative data from the Illinois MCH Family Council and Youth Advisory Councils (described in the next sections) were also included on the datasheets, adding depth and illuminating community and family contexts. The datasheets successfully framed conversations during AC and EP meetings making discussions richer and data-informed. Participants referred to the datasheets to emphasize the importance of health conditions for a particular population, and to support their decision-making about keeping, changing, or deleting the prior Title V priorities.
Illinois MCH Databook
The datasheets served as the foundation for the Illinois MCH Databook 2020 (Appendix B). The Databook was an iterative project spanning the length of the NA that was informed by the NA process and aided in the development of priorities and the Action Plan. The Databook included measures believed best described the highest needs and priorities for Illinois as well as additional measures of importance identified at the AC meetings.
Measures are organized by population domain and presented individually or in combination with related measures. A separate section presents cross domain measures that may be considered together to give a population or life course perspective (e.g., substance abuse and mental health disorders). The measure pages are designed to stand alone and can be shared as separate documents.
Illinois MCH Family Council Listening Sessions
Voices of individuals and families who benefit most directly from Title V funding, programming and policy drove the development of many NA activities. The NA team facilitated semi-structured listening sessions with active members of the Illinois MCH Family Council across six regions. Participants shared their assessments of 1) positive and negative aspects of their communities; 2) health concerns specific to each Title V population domain; and 3) current Title V priorities. There were a total of 20 participants (19 women, 1 man; age range of 18-54 years; 11 Black, 2 Latinx, 5 White and 2 ‘other’). Most had children who were Medicaid recipients, and more than half were Medicaid recipients themselves. Recordings were transcribed, imported into the qualitative analysis software Dedoose Version 8.3.17, and analyzed for emergent themes. Thematic findings were integrated into the datasheets to further illustrate the quantitative data.
Advisory Council
In early 2019, a group of external professional stakeholders (n=12) were invited to participate in an AC, with 2-3 stakeholders represented each of the population domains. This group was charged with providing commentary on current MCH status, feedback on the 2016-2020 priorities, and advice on additional data needs or changes. A joint webinar and in-person meeting were held and datasheets were distributed prior to the meeting and referenced throughout the presentation. This meeting was well attended but participation was less robust than anticipated. For the second meeting, which was productive, a pre- assignment was developed to elicit additional feedback on surprising findings from the datasheets as well as thoughts on additions, revisions and deletions to the 2016-2020 priorities. This additional feedback was incorporated into materials for the actual meeting.
Youth Advisory Councils Listening Sessions
Given the unique physical and socio-emotional health needs of adolescents, the NA team captured the perspective of young people through listening sessions with a total of 6 school health centers’ Youth Advisory Councils (YACs). The sessions were held at 4 public high schools in Chicago and 1 high school and 1 middle school in Peoria.
Members of each YAC received a short questionnaire including socio-demographic and open-ended questions. Students reflected on positive and negative aspects of their communities as well as their main health and social concerns. These responses were used to facilitate semi-structured conversations with YAC members and key informant interviews with YAC advisors. A total of 40 students participated. Session notes were imported into the qualitative analysis software Dedoose Version 8.3.17 and analyzed for emergent themes. Findings were integrated into the datasheets to further illustrate relevant quantitative data on statewide MCH outcomes as well as shared with pertinent partners via a public-facing document (Appendix C).
Pregnancy Risk Assessment Monitoring System (PRAMS)
The NA team conducted a qualitative analysis of the 2016-2017 IL PRAMS open-ended prompt: “Please use this space for any additional comments you would like to make about your experiences around the time of your pregnancy or the health of mothers and babies in Illinois.” Comments were imported into Dedoose Version 8.3.17 and analyzed for emergent themes. The most common themes centered around social determinants of health and healthcare access and quality.
UIC-DSCC Parent Survey
UIC-DSCC (DSCC) conducted a Parent Survey to capture input on experiences of Illinois families enrolled in DSCC care coordination programs. The survey questions were constructed using the National Survey for Children’s Health (NSCH) and included open-ended questions to capture additional input from the respondents. A total of 5,248 families were sent the survey via email and regular USPS mail. Postcard reminders were mailed prior to the closing of the survey. Individuals excluded from participating were youth in care where the family spoke a language other than English or Spanish, and youth in care that would be 18 years and older by the time the survey period closed. A total of 1,005 survey responses were received (19% response rate; sampling error of ±2.4% at the 95% confidence interval). Black and Hispanic children and youth, and children under the age of 6 were under-represented in the survey. Pearson chi-square tests were used for statistical analysis.
Survey results were compared to the NSCH results for Illinois’ medically complex children on the following outcomes: (1) Families of CSHCN partner in decision-making regarding their child’s health; (2) CSHCN receiving coordinated and ongoing comprehensive care within a medical home; (3) Community-based services are organized so families can easily access them; (4) Families of CSHCN have adequate private and/or public insurance to pay for needed services; and (5) Youth with special healthcare needs receive the services necessary to make transitions to adult health care.
UIC-DSCC Program Staff Key Informant Interviews
DSCC’s care coordination team and program leadership are positioned across the state. Given the local relationships with medical and community groups serving CYSHCN along with direct interaction with over 7,000 DSCC Program participants and their caregivers, DSCC gained perspectives from the care coordination leadership and selected team members from the quality improvement teams. Semi-structured interviews were held in November and December 2019. During the interviews, the participants discussed areas of need and opportunity pertaining to systems of care and support for CYSHCN.
Step Two: Development of Priorities
Advisory Council Involvement
After the July 2019 meeting, AC members were asked to finalize their positions on keeping, revising or removing each of the 2016-2020 priorities. The discussion was guided by the following questions:
- Which areas of the 2016-2020 IL Title V Action Plan are robust? Which could be strengthened?
- Where is there flexibility in funding for new efforts?
- Are there current efforts that could be better highlighted and possibly expanded?
- For the new areas proposed by the AC, are there staff and capacity to adequately address?
Reflecting on the prior priorities, it was determined that IDPH should conceptually change how it integrated health equity and consumer engagement in its priorities. During 2016-2020, there were two specific cross-cutting priorities set forth: (1) Assure that equity is the foundation of all MCH decision-making; and (2) partner with consumers, families and communities in decision-making across MCH programs, systems and policies. It was agreed that since health equity and consumer engagement were pillar activities relevant to all future Title V efforts and initiatives, they would be overarching principles for all priorities, rather than stand-alone priorities. In addition, the AC recommended adding a priority for maternal and postpartum health, broadening the child focused priority from 2016-2020, and including system-level language in the adolescent priority.
Similar to IDPH’s approach, DSCC reviewed it’s two priorities from 2016-2020 to determine if they could be strengthened, if they aligned with the data from the needs assessment, and if they provided opportunity for expansion of efforts beyond the care coordination services currently provided. It was determined that efforts to prepare CYSHCN for the transition to adulthood could be strengthened, and the priority focused on enhancing the capacity of families to connect CYSHCN to the health and human services required for optimal behavioral, developmental, health, and wellness outcomes could be eliminated. Justification for the elimination of the second priority was because it was embedded in current care coordination practices across the state.
IL Title V proposed 10 priorities that the AC approved with overwhelmingly positive feedback. The priorities for 2021-2025 by domain are as follows:
Women/Maternal Health
- Assure accessibility, availability, and quality of preventive and primary care for all women, particularly for women of reproductive age. (Repeat)
- Promote a comprehensive, cohesive, and informed system of care for all women to have a healthy pregnancy, labor and delivery, and first year postpartum. (New)
Perinatal/Infant Health
- Support healthy pregnancies to improve birth and infant outcomes. (Repeat)
Child Health
- Strengthen families and communities to assure safe and healthy environments for children of all ages and enhance their abilities to live, play, learn, and grow. (New)
Adolescent Health
- Assure access to a system of care that is youth-friendly and youth-responsive to assist adolescents in learning and adopting healthy behaviors. (Revised)
Children with Special Health Care Needs
- Strengthen transition planning and services for children and youth with special health care needs. (Revised)
- Convene and collaborate with community-based organizations to improve and expand services and supports serving children and youth with special health care needs. (New)
Cross Cutting
- Strengthen workforce capacity and infrastructure to screen for, assess and treat mental health conditions and substance use disorders. (Repeat)
- Support an intergenerational and life course approach to oral health promotion and prevention. (New)
- Strengthen the MCH epidemiology capacity and data systems. (Revised)
Listening Session with MCH Family Council Members
A subset of MCH Family Council members (n=6) who attended the Illinois Women and Families Health Conference in October 2019 and were asked to participate in a review of the previously conducted listening session results and the new proposed priorities. Following a presentation of the themes and findings (Appendix D), participants engaged in a robust discussion confirming the identified needs and priorities as well as highlighted additional areas of concern.
Step Three: Assessment of Workforce and Agency Capacity
Agency Capacity and Budget Assessment
In spring 2019, the CoE-MCH NA team conducted key informant interviews with IL Title V Leadership (OWFHS Deputy Director and interim Title V Director) to explore the relationship between the IL Title V budget, staffing, and program capacity. Specifically, the conversation focused on the availability of state ‘matched’ revenue, Title-V funded staff positions, and key positions needed to enhance infrastructure (e.g., Title V Block Grant coordinator). Following this interview, the interim Title V Director reached out to the directors of other large states for organizational charts to understand the ways in which IL Title V staffing could be expanded.
Workforce Survey
The NA team administered a Workforce Survey to Title V staff in March 2020 via REDCap. The survey captures characteristics of the two Title V workforces and identifies training needs (Appendix E). The DSCC workforce contains over 225 individuals and the IDPH-MCH workforce included 18 staff members (13 Title V funded staff and 5 IDPH OWHFS staff who provide in part leadership, grant or fiscal support).
Partner Survey
In March 2020, partners were invited to participate in a survey reflecting on their specific relationships with the Title V program (Appendix F). Specifically, members of the NA Expert Panel (n=71) were invited to take the 15-minute online survey via REDCap. The survey assessed: 1) partners’ perspectives of their relationships with Title V; 2) intentions for future relationships; 3) perceptions of IL Title V functioning; 4) technical assistance needs; and, 5) general feedback about IL Title V. The survey was completed by 36/71 (50.7%) invitees.
Step Four: Development of Strategies and Action Plan
Expert Panel Webinars
To gather input on potential strategies, the NA team convened an Expert Panel (EP) consisting of professional stakeholders representing public health practitioners, medical care providers, academics, researchers, administrators, and advocates from the private and public sectors. A total of 106 MCH leaders across Illinois were invited to join, and 67% participated (n=71). Four interactive webinars facilitated by NA team were held in January 2020. Two webinars focused on children, CYSHCN, and adolescents and two focused on reproductive aged women, pregnant women, and infants. All webinars addressed the cross-cutting priorities of mental health, substance use/misuse, oral health, and data capacity (Figure 2). Panel members took a poll to identify how well their work aligned with each of the Title V priorities. Panelists discussed what is working well, ideas about new and creative approaches, and suggestions on how IL Title V might support their respective work.
The interactive nature of the webinars created a synergy among participants, facilitating a rich discussion about the significance of the Title V priorities and opportunities for collaboration. EP input was captured through webinar recordings, chat messages, and a follow-up survey. Input was summarized by priority and organized by key issues, opportunities for collaboration, and potential strategies. Draft summaries (Appendix G) were sent to participants for review and comment.
Public Input/Consumer Survey
A public input survey was deployed via the internet to identify MCH issues and ensure alignment between the proposed 2021-2025 priorities and consumer needs (Appendix H). Questions focused on important health concerns, problems, or challenges by population domain and for respondents’ respective communities, and barriers and discrimination experienced when accessing or receiving healthcare or other services. Four questions about home visiting services were included to assist the IL MIECHV’s NA.
The survey was created in SurveyMonkey and available in English and Spanish. IL Title V created posts on Facebook and Twitter, and sent emails to UIC-DSCC, the MIECHV program, and AC. The survey was open for two months and analysis was limited to those living in IL. There was a total of 553 responses (97% women; 82% White, 9% Latinx/Hispanic, 5% Black, 4% other including Asian; 22% Medicaid recipients).
Finalization of Priorities and Action Plan
IL Title V reviewed the data, finalized the priorities and created a draft of the State Action Plan. The plan was shared with key stakeholders via emails, presentations, and postings on IDPH’s website. Interested parties were given 30 days to provide feedback (Aug. 5, 2020 to Sept. 4, 2020). All comments were reviewed and incorporate, based on relevance and feasibility, into the final version to be submitted to HRSA by September 15, 2020.
II.C.2.b Findings
III.C.2.b.i MCH Population Health Status
III.C.2.b.i. MCH Population Health Status
Emergent Themes across Domains
Consumer stakeholders identified multiple barriers to accessing affordable, high quality and timely health care. Barriers included the prohibitive cost of private health insurance and services including life-saving medications; inadequate coverage provided through private and public insurance including exclusion of ‘complementary treatments’ (e.g. chiropractic); inadequate number of providers who accept Medicaid, especially specialists and in rural areas; lack of paid parental leave and its effect on family bonding and attendance at child and women’s health appointments; and time-consuming navigation of health and social service systems resulting in delays in care and coverage.
Consumer reported experiences of discrimination when seeking care (Table 1). Women especially felt ‘unheard’ about their own health and ‘bullied’ into accepting medical intervention during childbirth.
Mental health services throughout the life course were reported to be severely lacking, especially for those on Medicaid. There was a perception that non-communicable/ chronic diseases and substance use disorders had increased. Consumers also felt that there was a need for health education (Table 2).
Social Determinants of Health
Consumers highlighted social determinants of health affecting their physical and emotional wellbeing. Specifically, they listed limited access to nutritious food; affordable, quality housing; high performing schools; safe neighborhoods; and reliable transportation. A lack of paid maternity, sick and/or family leave and few affordable, quality childcare options also contributed to poor health outcomes. Inaccessible, unaffordable, and inadequate spaces for safe, interactive play was linked to perceived increases in obesity, social isolation, and neighborhood violence.
Women’s/Maternal Health
Across all consumer groups (MCH Family Council, Public Input, PRAMS), qualitative themes pertaining to women’s and maternal health included: poor provider availability and accessibility; poor mental health and need for community supports; need for high quality, respectful care and support during pregnancy; importance of timely prenatal care (PNC); postpartum stress and wellbeing; and parenting support. Less common themes were: gender discrimination and inadequate trauma informed care; need for affordable/free contraception, abortion services, and sexually transmitted infection (STI) testing; need for increased screening for chronic disease and disabilities for women; inconsistent Medicaid coverage and administrative requirements; need for enhanced outreach and support services for women experiencing intimate partner violence; need for access to care for high risk pregnancies; need for licensure of certified practicing midwives (CPM); need for increased insurance coverage for doulas, lactation consultants, CPM’s and birth centers; excessive obstetric interventions (inductions, C-sections, episiotomies); negative experiences during PNC and childbirth, including a sense of bullying and obstetric abuse; impact of maternal stress, anxiety, and mental health status on child wellbeing; difficulties balancing multiple roles and self-care along with parenting after childbirth; and unaffordable quality child care and inadequate early childhood education.
Findings highlighted the burden and disparities in chronic disease, mental health disorders and maternal morbidity and mortality. Among women of reproductive age in 2018, 2.4% had chronic diabetes, 9.8% had chronic hypertension, and 11.2% had asthma. Half of women were overweight or obese (54%), with Black women and women in rural counties experiencing higher rates, 76% and 65% respectively. In 2017, about 14% of women ages 18-44 smoked. Prevalence of smoking among women in rural counties was 30%.
STIs among young women remain a concern. In 2018, the rate of Chlamydia infection among women ages 15-24 was over 430 cases per 10,000 and was more than 5 times higher among Black women than White women. STI rates were also highest in the city of Chicago and urban counties. While receipt of an annual check-up has improved over time, 25% of women ages 18-44 reported no visit, and only 80% reported having a personal healthcare provider.
In 2018, one in six women ages 18-44 reported poor mental health during the last month. Mental health conditions were the second leading cause of hospitalization after delivery. Intimate partner violence was also mentioned as a factor contributing to mental health issues. In 2017, about 2.3% of women delivering a baby reported physical abuse by their husband/partner in the year before pregnancy.
In 2018, 24% of women received less than adequate prenatal care, most commonly in Chicago (33%), among Black and Hispanic women (39% and 29%, respectively) and teen mothers (38%). Racial disparities were also evident in maternal morbidity and mortality. Severe maternal mortality (SMM) occurred in every 51 per 10,000 deliveries (2016-17, excluding transfusions). SMM was almost 3 times higher for Black women compared to White women. In 2015-16, there were 61 pregnancy-related deaths of which 66% were seen as preventable. These deaths were over 6 times higher among Black women than White women. The leading cause of maternal mortality was mental health issues, inclusive of substance use disorders.
Perinatal/Infant Health
Qualitative themes identified across stakeholders (MCH Family Council, Public Input) pertaining to the perinatal and infant health domain included: issues and concerns related to successful breastfeeding (BF), such as medication use, adequate milk production, inadequate BF supports in the hospital, at home and at work, high cost of pumping equipment, and pressure to BF; insufficient WIC formula allowance and high cost of formula; perception of excessive infant mortality and morbidity; and increased support for needs of premature infants and their families.
Disparities in birth outcomes by race/ethnicity persist. There were 6.5 infant deaths per 1,000 live births in 2016-2018; infants born to Black women compared to White women were 2.9 times as likely to die in the first year of life. Other disparities were seen in post-neonatal mortality rates, particularly due to Sudden Unexplained Infant Death (SUID) and continue to increase over time; Black-White ratios for post-neonatal death and SUID were 4.2 and 4.8, respectively. In 2018, preterm births increased to 10.7%, well above the Healthy People 2020 target of 6.8%; the Black-White ratio was 1.6.
Illinois saw early gains in reducing non-medically indicated early deliveries (NMIED), but the rate increased from 9.4% of term births in 2014 to 12.3% in 2018. In 2018, 82.3% of VLBW infants were born in a Level III+ perinatal hospital with a neonatal intensive care unit, up from 77.6% in 2010. Nevertheless, women residing in rural counties lag behind on this indicator, at 71.9%.
While some stakeholders described challenges initiating BF, statistics from 2013-2017 show overall improvement in rates of BF initiation (88.2%, 2017) and BF to twelve weeks (61%, 2017). Women across all demographic subgroups met or exceeded the Healthy People 2020 objective of 81.9% and Illinois had a steep increase in the proportion of infants born in Baby Friendly hospitals (from 2.2% in 2014 to 20.6% in 2018). Lower rates of exclusive BF to 12 weeks (34%, 2017) support the reports from consumer about difficulties sustaining BF, especially for Black mothers and young mothers.
Child Health
Qualitative themes identified across stakeholder groups (MCH Family Council, Public Input) regarding child health included: need for care coordination across different Managed Care Organizations (MCO)s; need for enhanced and affordable mental health services and timely trauma screening and trauma informed services; excessive use of technology/screen time and relationship to obesity and developmental delays; need for developmental and behavioral health assessments and services, including quality screening, treatment, and enhanced education and training for teachers; geographic inequity in environmental exposures (air pollution, lead) and impact on child health. The importance of prevention, screening and treatment for chronic diseases was noted. Asthma was noted as particularly challenging due to environmental exposures and a sense that it is not taken seriously by many providers.
While 79% of children ages 0-17 had at least one well child visit in the last year, concerns about fragmented care were supported by data. Half of Illinois children received care that met all the requirements of a medical home in 2016-2018. However, minority children and those from poor or near poor families were less likely to have a medical home. Consumers also stated they were concerned about an increase in unvaccinated children; however, data reflect this as an area of improvement. The percent of toddlers (19-35 months) fully immunized with the 4:3:1:3:3:4 series (DTap, Polio, MMR, Hib, HepB, Varicella, Pneumococcal) increased from 53.7% in 2009 to 75.4% in 2017.
Chronic conditions among children were another concern for consumers. In 2016-2018, 9% of children were reported to have asthma and the rate of pediatric emergency department (ED) visits for asthma was 71 per 10,000 children. For Black children, asthma prevalence was 19% and the ED visit rate exceeded 200 per 10,000. Childhood obesity is also prevalent with 29% of 10-17-year olds obese and 41% of children from low income families. Over 17% of children suffered from a mental health condition in 2016-2018, of which anxiety was the most prevalent. The prevalence of mental health conditions is higher in children from low income families. While 13% of children in 2016-2018 had oral health problems, the prevalence was 17% for Hispanic children and was twice as high for children in low- or middle-income families compared to high income families. Almost 25% of children ages 1-17 did not have a preventive dental visit in the last year, a concern validated by stakeholders.
Environmental and safe spaces were also concerns of the consumers. Of children aged 1-5 years, 5.5% had elevated blood lead levels (≥5 µg/dL); about 11% of Black children had elevated blood lead levels compared to 6% of White and 3% of Hispanic children. Unintentional injury remains the leading cause of death for children ages 0-14, with an overall rate of 1.7 per 100,000 and 3.9 per 100,000 in rural counties.
Adolescent Health
Qualitative themes identified across stakeholder groups (MCH Family Council, Public Input, YAC) related to adolescent health covered: need for comprehensive health education; available and affordable contraception; importance of formal and informal mentorship; bullying/cyber-bullying; poor mental health - depression and suicide; growing youth homelessness; increased support for Lesbian, Gay, Bisexual and Transgender and youth-friendly services and spaces; increasing SBHC’s; needs of undocumented youth; and the impact of neighborhood violence. Less common themes included: increased awareness of the consequences of excessive screen time; importance of safe technology use; lack of physical activity; increases in non-communicable disease (diabetes, obesity); increased substance use/misuse (e.g., vaping); importance of healthy relationships and consent; importance of STI prevention, testing and treatment; integration of oral health and primary care; and significance and value of peer educators.
Specific concerns regarding mental health were supported by statistics. Suicide is the third leading cause of death for adolescents, increasing from 8.2 (2010) to 10.6 per 100,000 (2018). Rates were highest among youth aged 15-24, youth in rural counties, and Whites and males. In 2017, 17% of youth considered committing suicide and 10% attempted suicide in the last year. Bullying and cyber bullying are also prevalent. In 2017, 21% of high school students were bullied on school property and 17% were electronically bullied during the last month.
Violence is also a concern. Homicide is the second leading cause of death for adolescents. In 2014-2018, the youth homicide rate was 22 deaths per 100,000 and more than 3 of 4 youth homicide victims were Black. Among female students who dated, 11% experienced physical and 11% experienced sexual dating violence during the last year (2017).
Unintentional injuries declined from 2016 to 2018, but, are still the leading cause of death among adolescents. Motor vehicle accidents (MVA) are the main cause of deaths with highest rates among teens 15-19 in rural counties, among Whites, and among males. Using smartphones while driving is also a great concern. In 2017, 37% of high school students who drove a car reported that they had texted while driving during the last year.
Teen substance use is yet another concern. Although the percent of high school students who reported drinking alcohol decreased dramatically, from 44% in 2007 to 27% in 2017, about 19% of students reported tobacco use, 13% reported vaping, and 1 in 5 high school students reported marijuana use in the last 30 days. Tobacco use and vaping were higher among White students and males.
Consumers discussed adolescent access to comprehensive sex education, STI testing/treatment and contraception. From 2010 to 2018, births to women ages 15-17 and 18-19 dropped by 62% and 47%, respectively. However, racial/ethnic and geographic disparities still exist. Black and Hispanic teens and those living in rural counties have higher rates. Notably, condom use significantly declined. In 2017, nearly half of sexually active students did not use a condom during their last sexual encounter.
Lesbian, gay or bisexual youth reported higher prevalence of almost every adverse outcome examined compared to their heterosexual counterparts. Stakeholders perceived this group as high risk and in particular need of extra resources and support to address mental health issues, suicide risk, sexual risk-taking, and substance use.
CYSCHN
Qualitative themes identified in both the DSCC Parent Survey (PS) and Public Input Survey included: a need for additional assistance preparing for the transition to adulthood; issues pertaining to insurance adequacy; caregiving challenges regarding ability to work and financial strain; and geographic impact on availability of services (medical, social, educational). Additional findings included the need for more inclusivity, integration and adaption of services for CYSHCN and their caregivers.
Stakeholders indicated a need for additional partnerships across. This was reinforced in the expert panel reviews where recommendations included improved partnerships with other entities serving CYSHCN, increased education and awareness of issues prevalent to CYSHCN, and need to engage alternative providers such as Advanced Practice Nurses.
DSCC serves more than 16,000 children across the state, representing 2.8% of the CYSHCN identified by the National Survey of Children’s Health (NSCH). Of those participating in the PS, 84.2% reported a need to access healthcare services, 75.8% reported functional limitations, and 79.5% required specialized therapies. According to the NSCH, nearly 1 in 5 Illinois children reported having special healthcare needs. Approximately 64% of those children were in excellent or very good health. For children ages 3-17 years, 4% were diagnosed on the autism spectrum, and10% were diagnosed with ADD/ADHD. Racial disparities factored into all outcome measures as Black CYSHCN, on average, fared worse than other groups.
Preparation for the transition to adulthood remains a priority. As reported in the PS, 11.4% of youth received transitional services, which was lower than the 19.1% reported in the NSCH.
Adequate insurance is vital to improving and maintaining health. Only 54.9% of PS respondents reported adequate insurance. Families covered by private insurance or a combination of public and private insurance are more likely to have greater out of pocket expenses and hardships. According to the NSCH, the proportion of uninsured children in Illinois remains low (4.7%); yet, access to services remains an issue.
Respondents to the Parent Survey and the NSCH reported similar rates of receiving preventative care services, 70.8% and 71.7% respectively. According to the PS, 40% of children received appropriate developmental screenings, and less than 20% received care from a medical home. Medical Home use was reported at higher numbers by PS respondents as compared NSCH respondents (44.2% and 35%, respectively). Approximately 72% of PS respondents reported ease of access to community-based services compared to a little over 84% of NSCH. In addition, 86.3% of the PS respondents reported partnering in decision-making regarding their child’s health, a higher percentage than reported in the NSCH (71.5%). Overall, it is evident that a need for improvement exists with receipt of services in a well-functioning system (PS 12.9% & NSCH 9.6%).
Systems
While EP webinar discussions focused on strategy development, participants also adopted a system’s lens reflecting their individual and collective experiences. System issues identified included: fragmentation of services and need for comprehensive, coordinated, and integrated care; emphasis on best practice, quality, and timeliness of care rather than quantity; enhanced reimbursement and support for community based programs and services; scant primary care provider capacity; integration of a life course approach to health and wellbeing; use of an intersectoral approach; more coordination of MCOs with other community programs and health care providers; and inadequate, timely, local data. Proposed strategies to address systems issues included youth, family, and community involvement in program development/implementation, use of social media, advisory groups, Medicaid policy change, and State Task Forces (Appendix G). Notably, many of these themes were also identified during the Listening Sessions previously mentioned.
III.C.2.b.ii. Title V Program Capacity
III.C.2.b.ii.a. Organizational Structure
III.C.2.b.ii.a. Organizational Structure
Illinois’ Title V Maternal and Child Health Services Block Grant Program is administered by IDPH, Division of Maternal, Child, and Family Health Services (MCFHS) located in OWHFS. A subaward is given to the University of Illinois at Chicago Division of Specialized Care for Children (UIC-DSCC) to administer programming for CYSHCN.
OWHFS is one of six programmatic offices within IDPH. The vision of OWHFS is "a future free of health disparities, where all Illinoisans have access to continuous high-quality health care" and the mission is to “improve health outcomes of all Illinoisans by providing preventive education and services, increasing health care access, using data to ensure evidence‐based practice and policy, and empowering families.” OWHFS houses three divisions: Division of Maternal, Child and Family Services, Division of Women's Health Services, and Division of Population Health Management. Together these divisions seek to support women’s and family health across the lifespan.
UIC-DSCC is part of the University of Illinois at Chicago and reports to Office of the Vice Chancellor of Research. The Executive Director of UIC-DSCC is Thomas F. Jerkovitz. UIC-DSCC envisions that “children and youth with special healthcare needs and their families will be at the center of a seamless support system that improves the quality of their lives.” This vision is carried out by partnering with families and communities to help children with special healthcare needs connect to the services and resources they need. An intergovernmental agreement formalizes the collaboration between IDPH and UIC-DSCC.
III.C.2.b.ii.b. Agency Capacity
III.C.2.b.ii.b. Agency Capacity
IDPH
Shannon Lightner, MSW, MPA leads OWHFS. Ms. Lightner has served as the Deputy Director for 10 years and has extensive MCH experience. She previously worked at the American Cancer Society and served as a health policy advisor for two U.S. Senators and the Governor of Illinois.
Kenya D. McRae, JD, PhD, is Chief of the Division of Maternal, Child, and Family Health Services and the Title V Director. Dr. McRae received her training in Community Health Sciences from the University of Illinois at Chicago, School of Public Health (UIC-SPH) and joined IDPH in October 2019.
Illinois' CDC Assignee in MCH epidemiology is Amanda Bennett, PhD, MPH. Dr. Bennett received her training in MCH epidemiology from UIC-SPH and joined IDPH in December 2014.
Although IL Title V workforce (n=18) is smaller than states with comparable population size, they administer many initiatives and partner with an array of stakeholders to extend Title V’s reach across the state. Title V’s programs consist of the following: school-based health center program; adolescent health program to increase adolescent well-visits; administrative perinatal centers program that focuses on education, consultation and quality monitoring of Illinois’ birthing centers and hospitals; fetal and infant mortality review program; maternal health program with the Department of Corrections; perinatal depression hotline; and a host of programs in collaboration with key stakeholders such as Division Oral Health, EverThrive Illinois, Illinois Perinatal Quality Collaborative, Illinois universities and colleges, Chicago Department of Public Health, and other local health departments. EverThrive Illinois plays an integral role in facilitating consumer engagement in Title V planning. Title V staff also convene and participate on various advisory councils to ensure the program stays abreast of the needs of not only the MCH population, but also, the providers, organizations and distinct communities in which it serves.
Title V’s current staff are operating at their fullest capacity, and there is a need for additional talent to develop and implement new initiatives. Accordingly, Title V plans to fill vacant staff positions and create new positions.
UIC-DSCC
DSCC is a statewide program serving CYSHCN through care coordination and other coordinated efforts to improve systems of care. DSCC has 365 staff working in 12 offices throughout the state. A portion of funding for the DSCC programs comes from Title V. The collaboration of the statewide team along with the community-based relationships of the team members that enables DSCC to have greater awareness of the adequacy and effectiveness of systems of care serving CYSHCN in Illinois. UIC-DSCC partners include: IDPH, HFS, DHS (which includes Illinois’ Part C Early Intervention, home visiting and other early childhood programs, behavioral health, developmental disability, and rehabilitation services program), DCFS, ISBE, local schools, children’s hospitals across the state and in bordering areas, pediatric primary and specialty care providers, licensed home nursing agencies, and durable medical equipment vendors. Additionally, staff attend clinic rounds. Attendance at these rounds provides opportunities for the team to share knowledge about resources.
DSCC uses a person-centered approach to care plan development and has incorporated person-centered methodologies into its policies and procedures. Most of the team is involved with care coordination. DSCC has been working to promote a greater level of awareness amongst its staff of its role in Title V to help identify and report systematic issues impacting CYSHCN. Previously the care coordination teams, and dedicated Title V staff were in separate program units, but in the spring of 2020 these units were combined under the same leadership enabling improved connection and awareness of the various systematic projects in which DSCC is involved.
DSCC’s Family Advisory Council that includes a paid parent liaison. Currently, DSCC is revising its Family Advisory Council to update its purpose and representation.
Thomas F. Jerkovitz, MPA, CPA is the Executive Director of DSCC. Prior to coming to DSCC, he served in the Governor's Office, as Senior Policy Advisor, a Division Chief in the Governor's Bureau of the Budget, as the Executive Director of the Illinois Comprehensive Health Insurance Plan (ICHIP), and as a Director for Health Alliance Medical Plans, Inc.
III.C.2.b.ii.c. MCH Workforce Capacity
III.C.2.b.ii.c. MCH Workforce Capacity
IDPH
Title V has a total of 13 FTEs exclusively paid by Title V. Five other OWHFS staff provide, in part, leadership, grant or fiscal support. Much of the staff (n=16/18 or 88%) completed the Workforce Survey. According to the survey results, most of the staff (n=10) has been with Title V for four or fewer years. In addition, many of the staff are 45 years or younger. Another notable characteristic that the workforce is highly educated, with 15 respondents having at least a bachelor’s degree, 8 with a master’s (3 with an MPH), and 3 with a PhD.
The training needs identified by the staff include: using a systems approach to design and implement interventions (75%); translating and communicating data including data visualization (69%); using data for decision-making (56%); incorporating health equity principles into efforts (56%); communicating clearly with stakeholders and partners (56%); and, basic and complex data analysis (56% for each item). Several of these training needs were also identified in the Partner Survey. IL Title V Leadership were asked about the main factors affecting training of their staff and agreed that registration cost, time commitment, availability of online training, and organization or supervisor support to attend the training are all important variables.
DSCC
The majority of DSCC staff (n=184/226 or 81%) completed the Workforce Survey. Half of the staff was new, having worked fewer than two years at DSCC (n=92, 50.3%); 35 respondents had worked for two to four years, 22 for five to nine years, and the remainder for 10 or more years. The majority of DSCC’s workforce is 45 years old or younger (59.4%); and 36% is 46 to 64 years. Similar to the IDPH’s staff, the DSCC staff is highly educated, with 61 having at least a bachelor’s degree, 105 with a master’s degree (2 with an MPH), and 2 with a PhD. The DSCC respondents were racially/ethnically diverse: 53% White, 21% Black, 15% Hispanic, 3% Other and 8% did not answer.
Training needs identified by staff included: understanding continuous quality improvement strategies (69%); incorporating health equity principles into efforts (65%); using a systems approach to design and implement interventions (62%); identifying evidence-based or evidence-informed practices (60%); incorporating life course principles into efforts (55%); and communicating clearly with stakeholders and partners (51%). In addition to these areas, leadership would like to provide additional staff training in the use of data for decision-making and program planning; basic data analysis-counts/frequencies, and simple graphs/charts; complex analysis-regression/GIS mapping; and literature reviews.
Factors influencing staff’s ability to participate in professional development or continuing education (CE) opportunities included: availability of online training options; organization or supervisor support to attend training (48%); location and ability to receive continuing education units (47%); and registration cost and organization/program professional development requirements (45%). DSCC Leadership agreed that these factors and time constraints influenced staff training opportunities.
III.C.2.b.iii. Title V Program Partnerships, Collaboration, and Coordination
III.C.2.b.iii. Partnerships, Collaboration and Coordination
For the NA, Title V collaborated and partnered with various stakeholders to expand the State’s capacity and reach.
Expert Panel (EP)
EP members were chosen for their MCH expertise related to the proposed priorities, and their potential to identify strategies that would expand collaborative work and partnerships across the state, and further the development of a system of care for women, infants, children, and families. Their ideas for system development and enhancements are described previously in the Systems subsection. Potential partnerships, alliances, and collaborative efforts identified by the EP included: working within and across public and private sectors; thinking outside of the box in terms of who is/can be a partner; creating and supporting multidisciplinary partnerships across universities, community based health and social organizations, and the corporate world; applying a life course approach in collaborative relationships; creating a continuum for quality primary, secondary, and tertiary health care; integration of oral health and primary health care across the life course; and, leveraging interest and resources of national and state professional organizations (Appendix G).
Partner Assessment
The EP was also asked to participate in the Partner Survey. Half of the EP members (n=36/71) responded to the partner assessment: 32 who partner primarily with IDPH and 4 who partner primarily with DSCC. Overall, 31% of respondents were health care providers and 31% were from federal, other state or city public agencies. Most respondents served MCH populations: pregnant women (75%), infants (72%), adolescents (60%) and children (50%). One-third of respondents stated they serve CYSHCN. The partners primarily interact with Title V by serving on task forces/committees, providing expert advice, and as funding recipients. Almost 100% of recipients expressed a desire to serve on task forces/committees, 85% desired to provide expert advice, and 75% were interested in receiving funding. Among those who interact with the Epidemiology Team, most receive data and technical assistance related to using data. Approximately 85% desired to receive routine data, 88% wanted to receive data as needed, and 78% wanted to receive technical assistance.
Partners provided a very positive assessment of Title V’s leadership, partnership, and communication. Almost 70% of those reflecting on IDPH and 50% of those reflecting on DSCC believed that the Title V staff always demonstrate clear and consistent purpose in their work. Almost 70% of those reflecting on IDPH indicated that Title V always demonstrate cooperative relationships with partners; and for those reflecting on DSCC, 75% stated that DSCC always or usually demonstrate cooperative relationships with partners.
Regarding technical assistance, the greatest needs expressed by partners were: incorporating health equity principles into efforts (81%), translating and communicating data including data visualization (72%), using a systems approach (59%), and conducting complex data analysis (59%). The respondents reported that the most convenient modes for training are webinar (72%), online education course (64%), and peer to peer learning collaborative (58%). Most partners wanted information about Title V’s efforts through quarterly newsletters, annual reports, and periodic emails.
Many partners also expressed a desire for IDPH data sharing program, data reporting, and data analysis. DSCC partners desired enhanced services regarding existing program (e.g., care coordination).
MIECHV Collaboration
For the 2020 NA, there was a concerted effort for collaboration and alignment between Title V and MIECHV, especially since the programs sit in separate state agencies. Title V and MIECHV supported each other in several ways: (1) data sharing; (2) serving on each other’s NA advisory councils; (3) hosting joint coordination calls, and (4) including questions on public input surveys.
Other Partnerships
IL Title V is implemented through collaborations and partnership between IDPH, DHS, HFS, and the University of Illinois at Chicago (UIC). IDPH maintains an intergovernmental agreement with the UIC Center of Excellence in MCH to obtain epidemiologic support and assistance.
Other internal partners include the Office of Minority Health, the Division of Vital Records, the Division of Patient Safety and Quality, the Division of Chronic Disease, birth defects program, and Pregnancy Risk Assessment Monitoring System (PRAMS).
External partners include the GOECD, Illinois Early Learning Council; Illinois Home Visiting Task Force; Illinois Perinatal Quality Collaborative; and EverThrive Illinois, the organization that helps IDPH engage consumers to discuss barriers that families encounter in accessing health services and programs and provide recommendations for improvements to public health systems.
DSCC maintains close relationships with all major public and private agencies involved in services for CYSHCN, including the Illinois Chapter of the American Academy of Pediatrics (ICAAP); the Arc of Illinois; the Illinois LEND program; and the Illinois Universal Newborn Hearing Screening Advisory Committee. DSCC also collaborates with the Sickle Cell Center at the University of Illinois Hospital and Health Sciences System to pilot a new model of care delivery for children and adolescents with Sickle Cell Disease.
III.C.2.c. Identifying Priority Needs and Linking to Performance Measures
III.C.2.c. Identifying Priority Needs and Linking to Performance Measures
As previously discussed in the Needs Assessment (NA) process section, IL Title V priorities were developed early in the NA process through feedback with the Advisory Council (AC). Title V staff compiled the feedback from the AC and synthesized comments about opportunities to refine existing priorities and to create new priorities. The AC provided feedback that framing the priorities in terms of systems and infrastructure issues would best align with the work of the IL Title V, rather than focusing on provision of specific services. Additionally, the AC highlighted several topics that were within the Title V scope that should be considered for inclusion as a priority, including: maternal health (more specifically than just reference to “birth outcomes”), child health beyond the early childhood years, and oral health.
Reflecting on the 2016-2020 priorities, the AC also recommended that IDPH conceptually change how it integrated health equity and consumer engagement in its priorities. During 2016-2020, there were two specific crosscutting priorities on these topics. However, it was suggested that both health equity and consumer engagement should be pillar activities relevant to all future Title V efforts and initiatives. Accordingly, both items became overarching principles for all priorities. The AC recommended adding a priority for maternal and postpartum health, broadening the child focused priority from 2016-2020, and including system-level language in the adolescent priority.
Like IDPH’s approach, DSCC reviewed its previous priorities with its Medical Advisory Board to determine if they could be strengthened, were aligned with the data from the Needs Assessment, and provided opportunity for DSCC to expand its future activities. DSCC determined that efforts to prepare CYSHCN for the transition to adulthood, a current priority, would continue and additional opportunities for Title V to support training on transition in physician practices existed. DSCC developed a new priority to focus on convening and collaborating with community-based organizations to improve and expand services and supports for children with special health care needs. This priority will help DSCC move away from direct services and toward population-based and infrastructure-building services that can change the health care and support service landscape for CYSHCN.
The proposed MCH priorities for 2021-2025 were sent to the AC for comments and approval in December 2019. There was overwhelmingly positive feedback on the proposed 2021-2025 priorities that resulted in only minor editing.
The Illinois Title V Priorities selected for FY 2021-2025 are summarized in the table below:
Table: Illinois Title V Priorities for 2021-2025 and Rationale for Selection
In addition to the ten priorities, Illinois Title V has set up four specific standards for each priority that will be addressed each year of the 2021-2015 cycle. These are additional expectations for the ways that Title V will address the priorities and carry out the state MCH action plan. The four standards that will be applied to each priority will include:
- Each priority will have at least one evidence-based program or strategy.
- Each priority will have one mechanism for routine feedback from consumers, families and communities to guide decision-making and program planning throughout the grant cycle.
- Each priority will have one communication product (e.g. infographic or report) annually highlighting an IL Title V or a relevant health outcome.
- Each priority will have at least one program or strategy that is applying a health equity framework.
RELATIONSHIP OF PRIORITIES TO NATIONAL AND STATE PERFORMANCE MEASURES
The fifteen available national performance measures (NPM) were considered in light of the selected state priorities and the proposed action plan for each priority. Illinois prioritized selection of measures that mapped well conceptually to the priority needs, but also has at least one related strategy in the state action plan. Given that many of the Title V priorities are infrastructure- and systems-focused, priority was also given to those NPM that focused on the health system or services (rather than specific health behaviors or outcomes). The Title V Director and MCH epidemiology team discussed the options and ultimately selected the following NPM:
Women’s / Maternal Health: NPM #1: Well-woman visits; and NPM #2: Low-risk cesareans
Perinatal / Infant Health: NPM#3: Very Low Birth Weight Babies Born in Level III Hospitals; and NPM #4: Breastfeeding
Child Health: NPM #6: Developmental screening for young children
Adolescent Health: NPM #10: Adolescent well visits
Children with Special Health Care Needs: NPM #12: Transition services for youth
Cross-Cutting: NPM #13-1: Preventative dental services for pregnant women; and NPM #13-2: Preventative dental services for children
The priority measures that were not selected included: #5 (safe sleep), #7 (injury), #8 (physical activity), #9 (bullying), #11 (medical home), #14 (smoking), and #15 (adequate insurance). These measures were not selected because Illinois does not have any specific strategies in the action plan that would be expected to reasonably affect these measures on a statewide basis. Nevertheless, Illinois will consider whether any of these measures should be added in a future year as the state MCH action plan is revised and expanded. For example, the IL Title V has interest in doing more to affect physical activity and bullying in the future, but it is still exploring how best to engage in that work.
After the eight national performance measures (NPMs) were selected, the NPM were mapped to the priorities. This allowed for identification of priorities without a related NPM, and for identification of priorities where the associated NPM did not fully represent the Illinois MCH action plan. These gaps in measurement sparked discussion between the MCH epidemiology team, the Title V Director, and the DSCC team to brainstorm potential state performance measure topics, data sources, and indicators.
After NPM selection, there were three Illinois priorities without an associated NPM: #7 (CSHCN community systems building), #8 (mental health and substance use), and #10 (MCH epidemiology capacity and data systems). In addition, for priority #6 (safe and healthy environments for children) it was determined that the NPM on developmental screening alone did not represent the breadth of Illinois work on child health and that a SPM should be considered in addition to the NPM. After discussion between Title V leadership and the MCH epidemiology staff about available data sources and potential indicators, five SPM were developed to address topics of: difficulties with accessing needed care, family partnership in decision-making for care, difficulties obtaining mental health services, discussions of depression during pregnancy, and a composite score for data access, utilization, and reporting.
The table below gives the full NPM/SPM indicator names and their linkages with the Illinois Title V priorities for 2021-2025. More information about the specifications for the SPM is available in Form 10.
Table: Linkage of Illinois Title V Priorities to National and State Performance Measures
National and state performance measures will be used to highlight the impact of Illinois Title V on MCH populations across the life course. Objectives for each NPM and SPM were developed based on an assessment of recent trends and a prediction of realistic progress that could be made in another 5 years.
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