In Federal Fiscal Year 2022, families of CYSHCN in Iowa began a return to a “new normal” as COVID-19-related restrictions and enhancements to social programs in Iowa began to wind down. Families navigating complex systems of services and supports continued to face barriers to finding in-home care, respite services, and school-based services. Access to emotional, behavioral, and developmental evaluation and services is still a primary concern statewide, and especially in rural areas.

 

Many families face barriers to accessing Iowa’s Medicaid Home and Community-Based Services (HCBS) waiver programs because of long waitlists and eligibility requirements. Once enrolled, families face serious barriers finding service providers. At the state level, efforts to expand the direct services workforce came increasingly into focus and this year, several bills were introduced in the legislature that were designed to help relieve some of the workforce pressures. Additionally, the Iowa Department of Health and Human Services contracted with Mathematica to undertake a review that is expected to result in an overhaul of Iowa’s HCBS waiver programs. Staff from the Division of Child and Community Health (DCCH) have had opportunities to participate in several meetings that were part of this review. DCCH staff have shared that children’s needs are different from the needs of adults and as such, it is important to maintain pediatric specific waiver services, as well as a robust transition to adult services program. Iowa’s Title V program staff are watching these developments closely. More details about the review can be found here: https://www.mathematica.org/projects/program-evaluation-and-analysis-for-iowans-with-behavioral-health-disability-and-aging-needs.

 

For Federal Fiscal Year 2022, DCCH and the Regional Centers it operates have continued to focus on the three priority areas identified in the 2020 5-Year Needs Assessment. These priority areas are: 1) Access to community-based services and supports, pediatric specialty providers, especially mental health providers, and coordination of care; 2) Access to support for making necessary transitions to adulthood; and 3) Support for parenting Children and Youth with Special Health Care Needs (CYSHCN). DCCH is in the pre-planning stages for the 2025 5-Year Needs Assessment.

 

Priority Need

Access to community-based services and supports, pediatric specialty providers, especially mental health providers, and coordination of care (Oct 1, 2021 through Sept 30, 2022)

 

NPM 11. Percent of children with and without special health care needs having access to a medical home

The Access to Care priority area included three main strategies: 1) provide gap-filling direct clinical services through Regional Centers; 2) increase infrastructure to support telehealth; and 3) increase primary care capacity to treat children with complex and/or mental health needs and developmental and intellectual disabilities.

 

The provision of gap-filling direct services included: 1) providing specialty care to families, including enhanced, culturally-responsive supports; 2) a focus on family-centered goal setting; and 3) assessing best practices for trauma informed and culturally responsive care coordination that aligns with community needs.

 

Providing specialty care to families

 

DCCH includes 13 permanent Regional Centers that are open either 4 or 5 days per week depending on community needs and available resources. Title V Block Grant funding provides foundational support for the Regional Center infrastructure, and funding is braided with other federal and state resources, and program income from public and private health care payer reimbursement. All Regional Centers include registered nurses, family navigators, and clerical staff. Most Regional Center staff include an advanced registered nurse practitioner (ARNP), and some have social workers, dietitians, or other program staff. Services are also provided through satellite locations where staff provide services once or twice a month, and locations with family navigators who provide family to family support. All Regional Centers are equipped with modern telehealth equipment, providing families with access to pediatric specialty health care services from University of Iowa providers. Gap-filling direct services are provided to families through the Regional Center infrastructure, primarily in rural areas of the state, or where specific gaps exist.

 

In FFY2022, DCCH directly served 8006 children and their families. Additional funding is received from a number of different sources, including state and federal grants and contracts, and public and private health care payers. DCCH can provide services and supports for children with special health care needs ages 0–21 years regardless of diagnosis. Examples of programs that leverage additional funding from other grants or contracts are listed below; a handful of patients were seen by multiple programs due to eligibility changes within the year.

 

Examples of DCCH programs that receive funding in addition to Title V foundational support:

Regional Autism Assistance Program (RAP)

41% of DCCH patients were served through the Regional Autism Assistance Program (RAP). RAP coordinates educational, medical, and other services and supports for children and youth who have ASD or are suspected of having ASD, their parents, primary caregivers, other family members, and providers of services to persons with ASD. With foundational funding from the Title V block grant, DCCH combines funds from the Iowa Department of Health and Human Services (Iowa HHS) and the Iowa Department of Education (IDOE) to administer RAP.

Health and Disability Waiver and Waitlist Services (HDM)

8% of DCCH patients were served through the Medicaid Health and Disability Waiver program or its waitlist. Nurses and Family Navigators help locate and organize resources enabling these children to grow up with other family members and participate in normal community activities. The HDM team helps families access health, education, and social support services and provides care coordination to help children with special health needs remain at home and in their communities. Title V supplements funding provided through Iowa HHS and Iowa Medicaid.

Pediatric Integrated Health Home (IHH)

8% of DCCH patients were served through the Pediatric Integrated Health program (IHH). This program provides care coordination and family support services to Iowa children and youth who are eligible for Medicaid and have mental or behavioral health diagnosis. DCCH provides IHH services to children and families through four regional centers in northeastern Iowa. Title V supplements funding provided through Iowa HHS and Iowa Medicaid.

Community Circle of Care (CCC)

2% of DCCH patients were served through the Community Circle of Care (CCC). CCC is a regional System of Care program providing care coordination for community-based services and supports to non-Medicaid children and youth with serious behavioral or mental health needs in northeast Iowa. CCC serves children and youth up to 21 years old through four regional centers in northeastern Iowa. Title V supplements funding provided through Iowa HHS.

 

In FFY2022, DCCH also provided service coordination to about 300 children, nutrition services to over 400 children, and health assessments to around 100 children with enrolled children 0-3 years old through Early ACCESS, Iowa’s Part C Early Intervention program.

 

DCCH employed eight ARNPs who provided developmental and behavioral screenings and assessments, mental health care, medication management, medical care coordination, and other medical supports in Regional Centers. In addition, at the very end of FFY2022, a pediatrician began providing services in the Ottumwa Regional Center in addition to the ARNP. In FFY2022, DCCH ARNPs completed nearly 3000 in-person visits with about 1650 children. The COVID-19 pandemic created an opportunity for some gap-filling DCCH ARNP visits to occur via telehealth. Although higher than pre-pandemic, telehealth visits with nurse practitioners from Regional Centers were lower than the previous year. This is likely due to several factors including family and provider preference for in-person visits and increased availability of in-person appointments for ARNPs. In FFY2022, there were 456 DCCH ARNP telehealth visits: 216 into homes, and 240 into Regional Centers that do not have an ARNP on-site.

 

DCCH Advanced Registered Nurse Practitioner (ARNP) visits

	FFY2022	FFY2021
In-person	2887	2412
Telehealth in clinic	240	376
Telehealth into home	216	1244
Total ARNP visits	3343	2788

 

University of Iowa Health Care is Iowa's only comprehensive pediatric tertiary care center, located in east central Iowa, in Iowa City. For many families this is their only access to specialty services within the state. DCCH has been providing access to pediatric specialty services through telehealth for CYSHCN in Regional Centers across the state for decades. DCCH continues to build on this infrastructure and add new specialties to increase the number of CYSHCN who are able to access services each year. In FFY2022, a number of telehealth services were expanded and enhanced, especially in the areas of child and adolescent psychiatry, and behavioral and developmental pediatrics. A Tele-Autism Spectrum Disorder pilot in the Ottumwa Regional Center began in July of 2022, and a Behavioral Psychotherapy Clinic began serving DCCH patients in April, 2022. In FFY2022, DCCH provided telehealth services from University of Iowa Health Care providers to 1372 patients. Of those, psychiatrists saw 660 patients through nearly 2000 visits in FFY2022.

 

Psychiatry visits facilitated by DCCH

	FFY2022	FFY2021
Telehealth in clinic	1702	1252
Telehealth into home	290	654
Total Psychiatry visits	1992	1906

 

Additional visits were provided in the areas of nutrition by registered dietitians, developmental and behavioral pediatrics, pediatric genetics, pediatric neurology, and psychology. DCCH dietitians also provided some services in-person during clinic visits.

 

Other pediatric specialty visits facilitated by DCCH*

	FFY2022	FFY2021
In-person	53	97
Telehealth in clinic	44	68
Telehealth into home	885	803
Total other pediatric specialty visits	982	968

*Includes registered dietitians, developmental and behavioral pediatrics, genetics, neurology, and psychology

 

Iowa's Evidence Based Strategy Measure for the Access to Care priority area focused on the number of telehealth visits facilitated through DCCH: ESM 11.1: Number of telehealth visits through Child Health Specialty Clinics. In FFY2022, DCCH facilitated 3377 telehealth visits. This is fewer than the number in FFY2021 (4397), which is due to a rapid return of in-person visits due to the pandemic in 2021.

 

All families who receive services through DCCH have access to support from family navigators. Family navigators are staff members who are also the parent or primary caregiver of a child with special health care needs. They work with families to provide emotional support, systems navigation, and connections to community resources. In FFY2022, DCCH family navigators provided over 33,000 contacts with or on behalf of over 4900 children and their families.

 

DCCH Family Navigator (FN) Contacts FFY2022

	FFY2022	FFY2021
Total contacts	33,467	36,821
CYSHCN (unduplicated) with FN contacts	4901	4590

 

Activities focused on increasing the infrastructure to support telehealth continue to result in increased access for families to specialty services. This included efforts to: 1) build partnerships with specialty providers including those from other states and institutions; 2) investigate mechanisms for funding and reimbursement of facility and staff time for telehealth; and 3) evaluate staffing needs to prepare for increasing telehealth opportunities.

 

DCCH staff have worked to be inclusive across underrepresented populations in the state. DCCH employs 2 Spanish speaking family navigators and one Marshallese-speaking family navigator, from within the communities they serve. DCCH works within the broader University of Iowa Health Care system to ensure that interpreters are available during telehealth and in-person visits. In FFY2022, interpreters were provided during in-person and telehealth visits through DCCH for families who preferred visits in another language. Most interpretation was provided through University of Iowa Health Care interpreters or through their contracted service provider, Cyracom. About 6% of children had a primary language other than English listed. Of those 6%, over half were Spanish speaking (56%). The most commonly seen primary languages are listed in the table below.

 

Language	Percent of all patients	Percent of non-English language patients
Spanish	3.5%	56.4%
French	0.6%	10.0%
Tigrinya	0.3%	5.6%
Arabic	0.3%	5.2%
Karen	0.2%	2.8%
Karenni	0.1%	2.4%
Marshallese	0.1%	2.4%
Somali	0.1%	2.0%
Burmese	0.1%	1.6%
Oromo	0.1%	1.6%
Vietnamese	0.1%	1.6%
Hakha Chin	0.1%	1.2%
Lingala	0.1%	1.2%
Swahili	0.1%	1.2%
American Sign Language	0.0%	0.8%
Mizo Chin	0.0%	0.8%

 

One advantage of administration of Iowa’s CYSHCN program from within an academic medical center is the opportunity to provide pre-service training to cohorts of students. Between January and March of 2022, DCCH worked collaboratively with Iowa’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program to coordinate telehealth shadowing experiences with the DCCH Nutrition Services Program staff for a total of 21 trainees.

 

Increasing primary care capacity to treat CYSHCN focused on workforce development initiatives and increasing resources available to PCPs for consultation. Primary Care Providers were offered access to continuing education opportunities through the use of webinars, facilitated through foundational funding from Title V and funding through the Health Resources and Services Administration (HRSA) Pediatric Mental Health Care Access (PMHCA) Program.  Program activities also included collaborations with the primary care medical community and training programs across the state. These programs and trainings have been developed with the assistance of the PMHCA Advisory Council whose members included representatives from the University of Iowa Physician Assistant program, psychiatrists, general pediatricians, the Iowa Department of Public Health's Title V MCH program and 1st Five Healthy Mental Development Initiative, the Iowa Chapter of the American Academy of Pediatrics, the Iowa Association of Nurse Practitioners, the Iowa Primary Care Association, and a family representative.

 

DCCH presented 11 training webinars in FFY2022, covering the following topics:

 

Date	Webinar topic	Presenter(s)*	Total Attendees	Primary care provider/ support staff
25 Oct 21	Nothing About Me Without Me- Shared Decision Making in a Clinic Setting	Ellen Eulberg, RN, Center for Disabilities and Development Diane Zaerr Brenneman, DMin, FPSS, Division of Child and Community Health	64	36
13 Dec 21	Using Sesame Street in Communities to Support Early Relational Health in Primary Care Clinics	Amy Shriver, MD, Blank Pediatrics, Unity Point Health	51	35
15 Feb 22	Our Experiences Treating Transgender Youth at UnityPoint LGBTQ Clinic	Wendi Harris, MD, FAAP, UnityPoint Health Pediatrics, UnityPoint LGBTQ Clinic	255	165
22-Feb- 22	Medical Care for the Transgender Teen	Richard Robus, MD, UnityPoint Health Pediatrics, UnityPoint LGBTQ Clinic	154	110
1-Mar 22	Supporting Transgender and LGBTQ Youth	Jordan Mix, CSCA, Iowa Safe Schools Patricia Eaton, Division of Child and Community Health	169	97
11 Apr 22	Eating Disorders for the General Pediatrician	Kyle McGinty, MD, MPH, Department of Psychiatry	107	77
1-Jun- 22	Anxiety Disorders in Children and Adolescents	Burgundy Johnson, DO, Child and Adolescent Psychiatry Carle Bromenn Medical Center	196	117
27-Jul- 22	Bad Behavior from Birth Through Adolescence	Burgundy Johnson, DO, Child and Adolescent Psychiatry Carle Bromenn Medical Center	198	123
8-Aug- 22	Recognizing and Responding to Psychological Trauma in Pediatric Primary Care	Alissa Doobay, PhD, College of Education, Gerta Bardhoshi, PhD,  Iowa Center for School Mental Health Taylor Ford, MSW, LISW, School of Social Work	80	45
7-Sep- 22	Parent Recommendations for Common Child Psychiatric Diagnoses	Burgundy Johnson, DO, Child and Adolescent Psychiatry Carle Bromenn Medical Center	139	90
29 Sep 22	Detecting and Managing Suicide Risk in Pediatric Primary Care Settings	Lisa Horowitz, PhD, MPH, National Institute of Mental Health, NIH	104	72

*Presenters were from the University of Iowa Carver College of Medicine except where otherwise noted.

 

Through a partnership with Iowa's Project LAUNCH, 273 professionals registered, including 16 primary care providers, for a virtual learning experience. DCCH participated on the planning committee, arranged for the provision of Continuing Medical Education credits, created marketing materials, and assisted with marketing efforts. This virtual learning experience included the following sessions for primary care professionals:

• Developmental Trauma: What is it and How Does it Show Up In Our Work?
• Elmo’s in our Neighborhood: Using Sesame Street in Communities to Support Child Social and Emotional Development in your Professional Practice
• Understanding Sensory Processing in Young Children
• Supporting Attachment Relationships
• Child Sexual Abuse: A Healthcare Provider’s Role in Prevention

 

Family-centered goal setting continued to be a priority in FFY2022. Regional Center staff initiate, review, and document family goals at each clinical visit. Providers document goals in the Epic Electronic Medical Record used by the University of Iowa Health Care System through a workflow developed in FFY2020. Goal setting documentation workflows have adapted to clinic and family needs, such as identifying methods for incorporating family-centered goal setting in telehealth visits. Goal setting activities included weekly and monthly review of documentation by program staff, and monthly consultations with Regional Center staff to celebrate successes and identify areas of opportunity. FFY2022 brought a renewed focus to goal setting, which is evident in the reported data. In FFY2022, the percentage of visits where new goals were initiated during the clinic visit was 94%, compared to 84% in FFY2021; the percentage of visits where current goals were reviewed was 92%, staying consistent with FFY2021 data.

 

Goal Setting Data FFY2020–2022

	2020	2021	2022
Percent of visits where new goals were initiated	86%	84%	94%
Percent of visits where current goals were reviewed	83%	92%	92%

 

Through monthly consultations with Regional Center staff, program staff were able to identify areas for staff development. In November 2021, DCCH hosted a staff training opportunity focused on strategies for providing family-centered care and best practices for supporting families through the goal setting process. There were 90 DCCH staff participants, including nurses, family navigators, social workers, administrative staff, and program staff.

 

Priority Need

 

Transition to Adulthood for Children and Youth with Special Health Care Needs (Oct 1, 2021 through Sept 30, 2022)

 

NPM 12. Percent of adolescents with and without special health care needs, ages 12-17, who received services necessary to make transitions to adult health care

 

Activities associated with the Transition to Adult Health Care priority need focused on three areas in FFY2022: 1) involving families and youth in DCCH transition programming efforts, 2) providing direct services for youth with special health care needs and their families, and 3) providing resources aimed at supporting families and youth with special health care needs from underrepresented backgrounds.

 

Involving families and youth in DCCH transition programming efforts

 

In FFY2022, DCCH launched its first Youth Advisory Council aimed at engaging youth in an advisory capacity. The Youth Advisory Council launched after a year of preparation and gathering feedback from DCCH staff and families. In December 2021, DCCH staff and the DCCH Family Advisory Council were formally surveyed to provide input on the Youth Advisory Council, including its structure, age range of participants, meeting frequency, and meeting topics. The Youth Advisory Council officially launched in April 2022. The council consisted of 6 youth self-advocate (3) or sibling (3) council members, 2 Young Adult Allies, 1 Master of Public Health graduate student assistant, 1 family navigator, and 1 DCCH program coordinator. Council members were 14–22 years old, while Young Adult Allies were young adult self-advocates who served as mentors to council members, as well as part of the programmatic leadership team for the council. Council members were distributed throughout the state and represented both rural and more urban areas.

 

There were 5 virtual council meetings from April 2022 to October 2022. Each council meeting began with 15-minutes of “social time” for youth to connect with one another and with the Young Adult Allies. Both the council members and Young Adult Allies were compensated for attending meetings. Council meeting topics were largely driven by the identified needs of council members, who strongly leaned towards building their leadership and advocacy capacity to better prepare them to provide feedback in an advisory capacity. Youth provided the following feedback on the transition to adult health care program:

 

• Leadership and advocacy skills are necessary for youth to successfully transition to adult health care
• Youth younger than 18 years old tend to be unfamiliar with what the transition to adult health care entails
• Siblings of YSHCN need specific advocacy skills to better support their siblings in their transition to adulthood
• Youth identified needing time, support, and structured discussions to successfully transition to adult health care systems
• Youth identified the importance of a support person at appointments and provided insight on the skills needed to become more independent at appointments. These skills include learning how to prepare questions prior to appointments, requesting accommodations, and methods for effectively communicating in a medical setting.

A toolkit detailing the process of starting a youth advisory council was developed in early FFY2023, and this project was presented in an AMCHP Workshop for the 2023 AMCHP conference.

 

FFY2022 also included efforts to tailor transition to adulthood programming to better support the needs of families of YSHCN. DCCH staff were asked to identify transition-specific needs of the families they serve to better tailor transition programming. The survey revealed an overwhelming concern for how to best support YSHCN and their families as they go through puberty and concerns surrounding sexual health. DCCH’s transition to adulthood program staff collaborated with the Family Navigator Network leadership team to provide a four-part webinar series for DCCH staff, including internal and external speakers. Continuing education credits were provided for eligible staff members. Planning for this series began in FFY2022 and the webinars launched in early FFY2023.

 

DCCH staff recognized that the transition to adulthood program had not been formally evaluated since the implementation of the transition checklists in 2018. Plans for formally assessing family and youth satisfaction with DCCH transition programming were finalized in FFY2022 and included family interviews and surveys with DCCH staff to gather feedback about program strengths and areas of improvement. In FFY2023, a Master of Public Health graduate student conducted this evaluation as an applied practice experience.

 

Providing direct services for youth with special health care needs and their families

 

The documentation of transition plans continued to be a priority in FFY2022. FFY2021 activities included creating methods for streamlining the transition documentation process for clinic staff and adjusting workflows; this continued into FFY2022. Regional Center staff have continued efforts to initiate, review, and document transition plans at each clinical visit. Transition planning is initiated with the completion of a family and youth-driven Transition to Adult Health Care Checklist, developed by DCCH staff and based on Got Transition® and other resources. The form is available in electronic tablets for in-clinic use, and also on hard copy. A Spanish language version is available, and for families who speak other languages, interpreters are available. The checklist refers specifically to 12 distinct aspects of transition to adulthood, with a space at the end for identifying other concerns. The 12 aspects are as follows:

 

1. Learning about my health needs, medicines, or allergies
2. Learning how health care privacy changes at age 12 and again at age 18
3. Planning for a health emergency
4. Learning how to fill out medical forms
5. Making healthy choices about food, friends, relationships, or alcohol, tobacco, and drugs
6. Learning how to make my own appointments, check myself in, or talk with my doctor/nurse.
7. Planning how to get to my doctor or nurse’s office
8. Learning where my pharmacy is or how to refill my medicines
9. Understanding health insurance
10. Finding a primary care provider or specialists who serve adults
11. Deciding whether I will need help making decisions after I turn age 18
12. Finding out which services I use now that will end at age 18 or 21 and how to sign up for new programs as an adult.

 

Transition plans are documented in the Epic Electronic Medical Record used by University of Iowa Health Care. DCCH program staff regularly reviews transition plan documentation data. There has been a continued effort to ensure that all transition-aged youth seen at Regional Centers have transition plans, which is evident in documentation of DCCH’s high rates of transition plan initiation and review. In FFY2022, the percentage of visits where transition plans were initiated was 93%, compared to 73% in FFY2021, while the percentage of visits where transition plans were reviewed was 94%, compared to 77% in FFY2021. Transition plan documentation is reviewed monthly by program staff, which results in monthly conversations with Regional Center staff to celebrate successes and identify areas of opportunity. ESM 12.1 is “the percent of youth ages 12–21 served by Child Health Specialty Clinics who have completed a transition checklist.” In FFY2022, DCCH saw 225 youth with special health care needs in the clinical setting. Of those, 220 had completed a transition to adulthood checklist (98%). This was an improvement over FFY2021 and exceeded the goal of 66% that was set for 2022.

 

Providing resources aimed at supporting families and youth with special health care needs from underrepresented backgrounds

 

Activities surrounding the development and dissemination of relevant transition resources have continued into FFY2022. Program staff regularly review, update, and add transition resources based on staff and family needs. FFY2021 activities surrounding the improvement of DCCH’s transition resources continued into FFY2022, with a specialized focus on tailoring resources to meet the transition needs of youth with medical complexities and/or intellectual and developmental disabilities. Transition workflows within Regional Centers continued to be reviewed to ensure that interpretation services are available in a timely manner to families. In line with DCCH’s health equity efforts, transition resources have been translated into several languages based on the increasingly diverse populations served through Regional Centers. All resources are readily available in English and Spanish, and additional translations are available upon request. The transition to adulthood program evaluation planned for FFY2023 will use family feedback to help better tailor transition resources to meet youth and family needs.

 

Priority Need

 

Support for parenting Children and Youth with Special Health Care Needs (Oct 1, 2021 through Sept 30, 2022)

 

SPM 7. Percent of caregivers of Children and Youth with Special Health Care Needs who report overall satisfaction with support services received through Title V

 

Strategies for supporting families were centered around three key areas: 1) providing family support services to Iowa families of Children and Youth with Special Health Care Needs, including recruiting and supporting ethnically diverse staff and cultural liaisons; 2) increasing appreciation of strengths and understanding of barriers to family participation in care statewide; and 3) ensuring caregiver confidence and capacity to advocate for children and youth with special health care needs on all levels (personal/family, community, and policy), including family training to underserved and underrepresented populations.

 

The Youth Services Survey for Families (YSS-F) was the basis of the questionnaire used to quantify the performance measure for SPM 7. The results of this survey found that in calendar year 2022, 87% of CYSHCN had families who reported overall satisfaction with services. The 2022 performance target for this measure was 88.5%. The survey was sent to families of 2927 children. Responses were received from 236 families for an 8.1% response rate, representing approximately 6% of families served by DCCH.

 

The YSS-F includes 26 questions with a 5-level Likert-type response scale ranging from 'Strongly Agree' to 'Strongly Disagree.' The items in the questionnaire are grouped into 6 domains: Access, Participation in Treatment, Cultural Sensitivity, Satisfaction, Outcomes, and Social Connectedness. The Satisfaction domain includes 6 items:

 

• Overall, I am satisfied with the services I received
• The people helping my child stuck with us no matter what
• I felt my child has someone to talk to when he or she was troubled
• The services my child and family received were right for us
• My family got the help we wanted for my child
• My family got as much help as we needed for my child

 

The state performance measure looks at the percent of families for whom the mean score for these items was over 3.5 on the 5-point scale.

 

Providing family support services

 

In FFY2022, family navigators provided support services to families of over 4900 CYSHCN. As of September 2022, DCCH employed 29 family navigators across the state. This included two family navigators who specialize in working with Spanish-speaking families, and one who specializes in working with families from Marshallese communities. Embedding family navigators who specialize in working with underserved or underrepresented communities, including hiring family navigators from within those communities is a priority for achieving strategic health equity goals. Goals, priorities, and strategies were identified through the DCCH Health Equity Committee, which operated in full coordination with the Family Navigator Network Leadership Team.

 

Family participation and care

 

Members of the Family Navigator Network meet monthly for a 60-minute in-service presentation, earning continuing education units to maintain state Family Peer Support Specialist certification. In-service topics for FFY2022 included:

 

12-Oct-21		Statewide Organizations: EHDI- Hands & Voices
9-Nov-21		Evidence-based Resources
14-Dec-21		Issues in Advocacy for families
11-Jan-21	FISH…positive work environment
8-Feb-22	Updates in Waivers & Social Security
12-Apr-22	Culture Vision Orientation and scenario groups
10-May-22	Mandatory Reporting & the Family Experience
14-Jun-22	Busting Stigma around children's mental health
12-Jul-22	Mobile Crisis Units
9-Aug-22	Resources for Resilience
13-Sep-22	Family Survey learnings
12-Oct-22	Professional Ethics & Social Media

 

The Family Advisory Council included 15 members from across the state, with meetings held primarily via teleconference. The Family Advisory Council met 5 times during FFY2022. This included the March “Day on the Hill” at the statehouse in Des Moines where council members were able to communicate needs of families of children and youth with special health care needs with policymakers.

 

Increasing caregiver capacity

 

DCCH prioritizes family partnership as foundational to all of its work. As part of this foundation, DCCH works to build advocacy skills for families and strengthen family advocacy networks.

 

The Iowa Family Leadership Training Institute began in 2016 to provide parents and caregivers the opportunity to develop leadership and advocacy skills. Sessions for the 2022 cohort ran from February through June and included 88 hours of trainings plus work with a mentor. This cohort comprised twelve family leaders. Participants came from both rural and urban areas of the state, and members from two traditionally underserved communities participated as a result of outreach efforts.

 

As part of this training, a community service project is developed. In 2022, projects included:

• Peer Connections
• Marshallese Advocacy Training
• Social Skills Training
• Guide for parents
• Autism in an Emergency
• Finding a Faith Home
• SE Iowa social media website
• Finding the Friendship Village
• Experiences with School Administration when CYSCHN have frequent absences from school
• Strategic Teaching Tips
• Collaborating for Quality

 

More information about these projects, and historic IFLTI community service projects are collected in a lookbook that can be accessed here: https://chsciowa.org/sites/chsciowa.org/files/resource/files/iflti_lookbook.pdf

 

IFLTI graduates often use their leadership skills to promote systems of care for CYSHCN. Participants have gone on to do great things, and while IFLTI can’t take all of the credit, it certainly contributed to family leadership capacity to advocate for CYSHCN. Participants have gone on to:

• Serve on family advisory councils,
• Serve on a school board: https://www.wsr.k12.ia.us/page/school-board
• Participate in a PBS documentary: https://www.youtube.com/watch?v=NNijL1r3bCI
• Contribute to books: https://www.amazon.com/Looking-Up-Truth-About-Syndrome/dp/B09K1XKKT5
• Participate on statewide boards: https://thearcofiowa.org/board
• Open a café to provide work experience for young adults with disabilities, https://www.iccompassion.org/copy-of-global-food-project

 

DCCH sponsors trainings for families to develop their family's story. Digital Storytelling is an in-person training based on The StoryCenter model which helps families produce a three-minute video with a voiceover, visual images, and effects. Two Digital Storytelling trainings were held in FFY2022. The first was in October, 2021 with 5 participants and the second in June 2022 with 3 participants. Trainees were parents or caregivers of children with a variety of special health care needs and diagnoses. In May, DCCH staff presented information about Digital Storytelling at the Public Health Conference of Iowa. There were 80 participants in attendance at this session. Links to Digital Stories can be found here: https://www.youtube.com/watch?v=zxNpPaMopBQ&list=PLRKfFV9Q8S1uQYCp1B7Jj9B9BToU8gjmj

 

Storytelling for family leaders is another family leadership capacity building training offered through DCCH. Storytelling for Family Leaders is a virtual training developed in consultation with the Iowa Department of Education based on the Parents as Presenters program. The training includes an in-person orientation, online modules, and virtual sessions for peer coaching to help families develop a 10-minute story to be used as part of their advocacy efforts. This training was offered in October 2021 and included 4 participants. This training offered support to family leaders from Iowa as well as Kansas.

 

In addition, DCCH contributed to Family Peer Support Specialist (FPSS) trainings. FPSS draw on their own experience as a parent or primary caregiver of a child with an emotional, behavioral, or mental health need and work to empower families by teaching skills that assist them in finding their own voice. FPSS are employed at social service agencies, clinics, residential programs, and other community-based organizations, and serve on a variety of advisory boards and committees at local, state, and national levels. In past years, DCCH staff developed the curriculum for the FPSS trainings and helped facilitate the efforts to create an FPSS certification through the Iowa Board of Certification. In FFY2022, 27 family peer support specialists were trained. Currently, this partnership is administered through the National Resource Center for Family Centered Practice in the University of Iowa School of Social Work. DCCH is still involved with this program and provides trainings on Shared Decision Making. More information about Family Peer Support Specialists and trainings can be found here: https://iowapeersupport.sites.uiowa.edu/family-peer-support#training

 

Family leadership for underserved and underrepresented populations

FFY2022 activities focused on expanding family leadership activities to underserved and underrepresented populations. DCCH worked on an intra-University collaborative hire of a Latina family member as outreach and training staff. This has allowed DCCH to build a stronger understanding of the strengths and needs of families of CYSHCN from Spanish speaking communities. This staff member participated in a Train the Trainer event for the Iowa Family Leadership Training Institute and is able to provide trainings to families.

 

In April (FFY2022) and October (FFY2023), DCCH facilitated Advocacy Trainings tailored to families of CYSHCN from Marshallese backgrounds in two communities. These trainings were designed by DCCH staff including a Marshallese staff member based on stated needs for the community. The goals of the trainings were to: 1) empower families to recognize their strengths; 2) understand the family role as an expert on their child; 3) empower families to ask providers for what they need; 4) understand the purpose and benefit of health screenings for children. The trainings took place in-person with 6 participants in Dubuque, IA, and about 20 in Ottumwa, IA.