CSHCN – Annual Report

 

Fiscal Year 2021 posed exceptional challenges for families of CYSHCN in Iowa due to the COVID-19 pandemic. Families who were already navigating a complex system of services and supports faced additional challenges finding in-home care, respite services, and school-based services, along with increased financial strain. Some parents faced ongoing stress related to legal restrictions placed on public health mitigation efforts, some of which were passed by elected officials and implemented overnight. Restrictions that impacted public school children with health vulnerabilities included the inability of large school districts to provide for social distancing and preventing schools from implementing masking requirements to slow the spread of the virus.

 

For Federal Fiscal Year 2021, the Division of Child and Community Health (DCCH) and the Regional Centers it operates have focused 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).

 

Priority Need

 

Access to community-based services and supports, pediatric specialty providers, especially mental health providers, and coordination of care (Oct 1, 2020 through Sept 30, 2021)

 

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) a focus on family-centered goal setting; 2) providing specialty care to families, including enhanced, culturally responsive supports, and 3) assessing best practices for trauma informed and culturally responsive care coordination that aligns with community needs.

 

Family-centered goal setting continued to be a priority in FFY2021. Regional center staff have continued to initiate, review, and document family goals at each clinical visit. Goal setting has been a priority even throughout the uncertainty that COVID-19 continued to bring to DCCH clinical services. Goal setting has adapted with clinic and family needs and has also become a priority to guide additional modes of patient care, including telehealth. Regional Centers have consistently initiated and reviewed goals with families, with program staff reviewing and reporting data on a weekly and monthly basis. Data reporting of program staff is also coupled with monthly consultations with Regional Center staff to celebrate successes and identify areas of opportunity. In FFY2021, the percent of visits where new goals were initiated was 84%, compared to 86% in FFY2020, while the percent of visits where current goals were reviewed was 92%, compared to 83% in FFY2020.

 

Goal Setting Data FFY2021

Percent of visits where new goals were initiated	84%
Percent of visits where current goals were reviewed	92%

 

In November 2020, program staff facilitated a workgroup with Regional Center staff regarding the successes and areas of opportunity within the family goal setting initiative. Workgroup members indicated that families were, in general, benefiting from participating in goal setting, but the benefits depended greatly on staff delivery of information. This feedback resulted in the development of a training session on the best practices surrounding family-centered care, specifically goal setting, which was presented to all DCCH staff in November 2021.

 

Providing specialty care to families

DCCH includes 13 permanent Regional Centers that are open either 4 or 5 days per week. 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, and program staff. There are also a number of locations across the state where services are provided through satellite centers, 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 FFY2021, DCCH employed seven ARNPs who provided developmental and behavioral screenings and assessments, mental health care, medication management, medical care coordination, and other medical supports. In FFY2021, DCCH ARNPs completed over 5200 in-person visits with about 1400 children. The COVID-19 pandemic created an opportunity for some gap-filling DCCH ARNP visits to occur via telehealth. In FFY2021, over 1200 ARNP telehealth visits were provided to pediatric patients in their homes. Nearly 400 DCCH ARNP visits were provided into Regional Centers via telehealth when ARNPs were not available within the Regional Center nearest the family.

 

DCCH Advanced Registered Nurse Practitioner (ARNP) visits FFY2021

	Number of visits
In-person	5255
Telehealth in clinic	376
Telehealth into home	1244

 

Iowa’s only comprehensive pediatric tertiary care center is located in Iowa City, in east central Iowa. For many families, this is their only access to specialty services within the state. DCCH has been providing access to pediatric specialty services for CYSHCN across the state for many years. 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 FFY2021, DCCH provided telehealth services from University of Iowa Health Care providers outside of DCCH to nearly 1700 patients, including over 1200 psychiatry visits.

 

Psychiatry visits facilitated by DCCH FFY2021

	Number of visits
Telehealth in clinic	376
Telehealth into home	1244

 

Additional visits were provided in the areas of nutrition by registered dietitians, speech pathology, developmental pediatrics, oncology, genetics, neurology, and endocrinology. DCCH dietitians also provided some services in-person during clinic visits.

 

Other pediatric specialty visits facilitated by DCCH FFY2021*

	Number of visits
In-person	97
Telehealth in clinic	68
Telehealth into home	803

*Includes registered dietitians, speech pathology, developmental pediatrics, oncology, genetics, neurology, and endocrinology

 

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 FFY2021, DCCH facilitated 4397 telehealth visits.

 

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 FFY2021, DCCH family navigators provided nearly 37,000 contacts with or on behalf of about 4600 children and their families.

 

DCCH Family Navigator (FN) Contacts FFY2021

	Number
Total contacts	36,821
Contact with family members	26,777
CYSHCN (unduplicated) with FN contacts	4590

 

 

DCCH activities tied to increasing the infrastructure to support telehealth resulted in increased access for families to specialty services throughout the pandemic that will last into the future. Activities focused on: 1) participating in programming that supports the use of telehealth; 2) streamlining the DCCH telehealth practices to align with the broader University of Iowa Health Care system; and 3) enhancing support for families receiving at-home telehealth services, such as providing family to family support through telehealth.

 

Programming to support the use of telehealth

 

DCCH participates in a number of programs that support the use of telehealth. These include activities resulting from advances in funding and reimbursement for telehealth services and the utilization of telehealth activities that increase health care system capacity to treat pediatric patients with special health care needs.

 

The Federal and State Emergency Declarations resulted in the lifting of several telehealth restrictions making telehealth services more accessible. These included families’ access to telehealth from their homes and the use of additional telehealth platforms including audio only.

 

Public Health Emergency declaration and telehealth flexibilities:

• Reimbursement for audio only telehealth visits
• No patient or provider location restrictions
• Expansion of covered services (ex. Occupational and Physical Therapy)
• HIPAA Flexibility in use of videoconferencing platform
• Rural Health Clinics and FQHC may serve as distant provider sites
• Reduction in cost-sharing for patients

 

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 Program. Through this grant, the DCCH Iowa Pediatric Mental Health Care Collaborative worked with the primary care medical community and training programs across the state. Advisory Council 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.

 

The Collaborative presented 10 trainings in FFY2021, covering the following topics:

Date	Webinar topic	Presenter(s)*	Total Attendees	Primary care provider/ support staff
27-Oct-20	COVID-19 in Children: Please Mind the (knowledge) Gap	Melanie Wellington, MD, PhD, Associate Hospital Epidemiologist, Clinical Associate Professor of Pediatrics	103	60
14-Dec-20	Update on Multisystem Inflammatory Syndrome associated with COVID-19 (MIS-C)	Sandy Hong, MD, Clinical Professor of Pediatrics, Rheumatology, Allergy and Immunology	76	55
6-Jan-21	ACE This: Adverse Childhood Experiences, their Impact on Early Childhood Development and the Importance of Trauma-Informed Care	Meredith Fishbane-Gordon, MD, Clinical Associate Professor of Pediatrics	106	32
23-Feb-21	COVID-19 Vaccine Update	Patricia Winokur, MD, Executive Dean, UI Carver College of Medicine, Professor of Internal Medicine, Infectious Diseases	55	35
14-Apr-21	Managing ADHD in Primary Care: Tips and Tools	Dianne McBrien, MD Medical Director, Center for Disabilities and Development, Clinical Professor of Pediatrics	134	89
10-May-21	Cannabis and Cannabidiol: Effects on Development and Use in Autism	Allan Andersen, MD Assistant Professor of Psychiatry	108	34
20-May-21	The Vermont Family Based Approach: How to build healthy brains for kids through family based health promotion and illness prevention	James J. Hudziak, MD, Professor of Psychiatry, Medicine, Pediatrics and Communication Sciences & Disorders, Director of the Vermont Center for Children, Youth and Families and The Division of Child Psychiatry	43	22
21-Jul-21	Suicidal Adolescent Family Empowerment Program: A Psychoeducational Resource for Clinicians	Kimberly Anderson, MSW, LISW, Clinical Technical Specialist, University of Iowa Hospitals and Clinics; Kelly Wood, MD, Clinical Professor of Pediatrics	121	32
2-Aug-21	Contributions of the Menstrual Cycle to Psychiatric Symptoms	Hanna Stevens, PhD, MD, Division Director, Child and Adolescent Psychiatry, Associate Professor of Psychiatry	80	15
23-Aug-21	Catch More Zzz's: A CBT-I Approach	Emira Deumic Shultz, MD, Fellow Physician, Child and Adolescent Psychiatry	73	20

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

 

Through a partnership with Iowa’s Project LAUNCH, over 400 professionals, including 200 health care professionals, participated in activities through a virtual conference. There were over 1000 views of the seven presentations at this conference. DCCH provided an overview of the Iowa Pediatric Mental Health Care Collaborative, including goals and objectives of the program, consultation services between primary care providers and the University of Iowa Child and Adolescent Psychiatrists, patient case examples typically handled by the consultation service, and referrals to mental health care providers and Pediatric Mental Health Teams through DCCH Regional Centers. For this session, there were 86 views, and 27 Continuing Medical Education credits were awarded.

 

DCCH supports pre-service learning through various University of Iowa training programs. The Iowa Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is co-located in the DCCH Iowa City administrative office building. In FFY2021 Iowa LEND and DCCH collaborated to allow LEND trainees to directly observe telehealth visits with providers through DCCH. Between January and March 2021, 11 trainees shadowed providers during telehealth visits. DCCH also supported a telehealth policy practicum for a student from the University of Iowa College of Public Health’s Health Management and Policy Master of Public Health program.

 

DCCH collaborated with the Iowa Department of Public Health to secure funding through the Association for Maternal and Child Health Programs for the Phones for Families program. This initiative allowed families without access to mobile telephones to connect with telehealth and other services to address social isolation and access the internet more broadly. The Iowa Department of Public Health’s evaluation of the program can be found here: https://idph.iowa.gov/Portals/1/userfiles/80/Workforce%20Study/I2D2%20-%20Phones%20for%20Families%20Report%20June%202021%20%281%29.pdf.

 

Streamlining telehealth to align with University of Iowa Health Care system

 

The DCCH Telehealth program relies heavily on the infrastructure provided by the broader University of Iowa Health Care system. DCCH has been at the forefront of the University of Iowa’s telehealth initiatives and has developed a number of tools and techniques to streamline scheduling and technology. As the broader system moved toward telehealth, accelerated by the COVID-19 pandemic, DCCH was able to further align its procedures including the migration from Vidyo to the MyChart Epic Native platform. This provided efficiencies for both telehealth providers and families receiving telehealth services.

 

Enhanced support through telehealth

 

As the University of Iowa Health Care system transitioned to the MyChart Epic Native platform, one barrier to care was re-introduced. With the Vidyo platform, DCCH was able to include enhanced supports through multi-party visits. This included the ability to simultaneously access interpreters and family navigation services within the telehealth visit. During the initial transition period, the University of Iowa Health Care system did not have access to multi-party visits through Epic Native. DCCH maintained access to telehealth through Vidyo during the transition in order to maintain support for multi-party visits. DCCH stated a need for multi-party visits as essential to providing high quality care in an equitable manner. A planned EPIC upgrade allowing for this capability went live for University of Health Care in March 2021.

 

Priority Need

 

Transition to Adulthood for Children and Youth with Special Health Care Needs (Oct 1, 2020 through Sept 30, 2021)

 

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

 

The DCCH Transition to Adulthood program focused on three key areas during FFY2021: 1) continuing to provide direct services to youth with special health care needs and their families; 2) updating transition to adulthood resources for youth, families, and those who work with them; 3) special attention to the creation and implementation of transition to adulthood resources that directly address issues for youth with special health care needs from underrepresented backgrounds.

 

The Evidence-based Strategy Measure for the transition priority area focused on the use of the DCCH transition checklist: ESM 12.1: Percent of youth ages 12–21 served by Child Health Specialty Clinics who have completed a transition checklist. In FFY2021,

92% of DCCH’s youth patients who had an appointment with a DCCH ARNP had a completed transition checklist.

 

Direct services

 

Staff development and trainings on transition to adult health care

 

Staff development and training on topics related to transition to adulthood for youth with special health care needs was prioritized in FFY2021. Program staff identified training topics based on their needs. In October 2020, a Transition to Adulthood for Youth with Intellectual Disabilities webinar was delivered by a University of Iowa professor of psychiatry who specializes in working with individuals with intellectual disabilities. About 40% of DCCH staff attended this training. Continuing education credits were awarded to 25 staff members including 11 nursing CEUs and 14 Family Peer Support Specialist credits. In June 2021, a webinar on Transition for Youth with Neurodevelopmental Disabilities was delivered by a professor of developmental pediatrics at the University of Iowa. About 25% of DCCH staff attended this webinar. Six nursing CEUs and 8 Family Peer Support Specialist credits were awarded.

 

Guidelines to clarify clinic-specific roles for addressing transition were created. Due to the unique needs of each Regional Center and the continued challenge of COVID-19 in FFY2021, there was a need for flexibility in how and who addressed transition within the clinics. Increased clinic staff duties due to Covid allowed for an opportunity to expand transition initiation and review to not just nursing staff, but to the Family Navigator Network as well. In situations where clinic responsibilities shifted, program staff trained family navigators on strategies to address and report transition activities. This included working with the DCCH's data manager to ensure that family navigators had access to transition reporting tools within the electronic medical record so that foundational programming, such as transition, continued to be prioritized.

 

In response to conversations with staff, additional trainings on how to utilize transition resources were created. Some unique challenges were identified, such as what to do when a young adult's developmental age did not match their chronological age. These discussions resulted in a larger conversation about how DCCH’s current transition resources could be adapted to fit the diverse needs of the patient population. This effort began in FFY2021 and includes the revision of the DCCH's transition resources to: 1) update information, 2) better incorporate transition resources into clinic workflows, and 3) tailor resources to fit patient needs, including more information about transition for youth and young adults with intellectual or developmental disabilities and medical complexities.

 

Youth Advisory Council

 

In FFY2021, DCCH continued the process of developing a Youth Advisory Council to increase youth engagement efforts. The goal of the council is to gain input from youth and young adults with special health care needs on programming that affects them, such as transition, and provide an opportunity for youth leadership and advocacy skills-building.

 

A careful and intentional effort was made in the development of the DCCH's Youth Advisory Council. In February 2021, the DCCH's Family Advisory Council was asked for feedback on the plans for implementing a Youth Advisory Council, which was instrumental in laying the foundation for future plans. Suggestions included expanding the proposed age range of Youth Advisory Council members, the addition of young adult mentors for participating youth, allowing youth siblings of children and youth with special health care needs to participate as members, and strategies for overcoming potential logistical challenges. Progress was made in developing detailed plans for the implementation of the council, which is based on the structure of the existing Family Advisory Council. An additional DCCH staff member who represents the needs of families was added to the team to develop and implement the council in hopes of incorporating the family voice. This DCCH staff member is also a content expert in developing and facilitating family leadership trainings, which was an asset in building the Youth Advisory Council's youth development components. Additionally, a Public Health graduate student was hired to assist in the development, implementation, and facilitation of the council. The Youth Advisory Council launched formal recruitment in January 2022 and held its first meeting in Spring 2022.

 

Updating Resources

 

Through a transition resources quality improvement project, it became clear that transition resources not only need to be accessible for in-clinic visits, but also for telehealth and external care coordination. The current transition resources have been made available electronically and many are also translated into Spanish. The revised transition resources launching in FFY2023 will be translated into additional languages based on language use data, and the DCCH's data manager will provide support to make resources easily available within the electronic medical record system.

 

Evaluate resources from a youth and family perspective

 

Feedback was obtained from families on current transition resources. In FFY2021, a family navigator with personal experience transitioning a youth with medical complexities joined the transition team. This collaboration has provided invaluable guidance to fill the gaps in current transition resources. Input from additional family navigators have assisted in directing the transition resources quality improvement project. Additionally, in collaboration with the Iowa Family Leadership Training Institute, staff gathered information about transition resource needs from a Latinx support group. Families provided input on culturally appropriate resources, such as more information on the topic of caregiver support when transitioning youth to adulthood.

 

Review and streamline documentation processes for all providers in DCCH

 

Streamlining transition plan documentation to better suit family needs was a goal of the transition program in FFY2021. Transition plan initiation continued to be reviewed based on revisions to reporting protocol that were made in FFY2020. As COVID-19 continued to be a challenge to clinics, the reporting system within the electronic medical record was reviewed and adjusted as needed. This included the expansion of staff eligible to access the transition reporting section of the medical record. As the number of specialists DCCH partnered with grew, transition plan initiation also had to adjust due to constraints on appointment length and available staff. In instances where a patient was seeing a specialist (such as a child psychiatrist through telehealth), program staff worked with regional centers to adjust reporting protocols to account for provider time. In these cases, nurses or family navigators would initiate transition plans with eligible patients before or after their appointment and continue follow-up through external care coordination.

 

Transition to Adulthood resources for youth from underrepresented backgrounds

 

DCCH staff planned to review resources with cultural brokers. Due to evolving resource limitations from state budgets and COVID-19 during FFY2021, priorities were shifted, and cultural brokers did not review the transition resources. Plans to identify and collaborate with cultural brokers go beyond the Transition to Adulthood priority area and is also a priority of the division's Health Equity Committee to ensure that community voice is at the center of program development. Ensuring culturally appropriate care, including culturally appropriate resources, is a priority for DCCH moving forward.

 

A priority for FFY2021 was to ensure that transition resources were available to the medical care system beyond DCCH in order to support greater access for youth from underrepresented backgrounds. This effort included maintaining updated transition information on the DCCH website, as well as sharing resources, processes, and workflows with other organizations doing transition programming. In FFY2021, DCCH’s Transition Checklist, a resource used to guide transition conversations with eligible youth, was shared with several states and workflows surrounding the use of this checklist were disseminated. In FFY2021, a collaboration began to enhance the Systems of Care for transitioning youth with special health care needs between DCCH, the University of Iowa Center for Disabilities and Development, and the University of Iowa Department of Psychiatry through a planning grant. Through this collaboration, DCCH's transition resources and workflows were shared with staff and community stakeholders, and this information was used to develop the application for an implementation grant. DCCH continued this collaboration into FFY2022.

 

Priority Need

 

Support for parenting Children and Youth with Special Health Care Needs (Oct 1, 2020 through Sept 30, 2021)

 

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 centered around three key areas: 1) provide 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) increase appreciation of strengths and understanding of barriers to family participation and care for direct services staff statewide; and 3) assure 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 2021, 82% of CYSHCN had families who reported overall satisfaction with services. The 2021 performance target for this measure was 88.0%. The survey was sent to families of 3961 children, including an oversample to families from racial or ethnically underrepresented backgrounds. Responses were received from 340 families for an 8.6% response rate, representing approximately 5% 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 a 5-point scale.

 

Providing family support services

 

In FFY2021, family navigators provided support services to families of over 4500 CYSHCN. As of September 2021, DCCH employed 26 family navigators across the state. This included a family navigator who specialized in working with Spanish-speaking families, and one who specialized in working with families from Marshallese communities. Embedding family navigators who specialize in working with specific communities, including prioritizing hiring family navigators from within those communities is a priority for achieving strategic health equity goals. These 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

 

The Family Navigator Network meets monthly for a 60-minute in-service presentation, earning continuing education units to maintain state Family Peer Support Specialist certification. In-service topics for this period included:

• Childcare in Iowa
• Family stories of the Family Navigator Network
• How to get the most out of your performance review
• Documentation and Medical Record tips
• Healthy professional boundaries
• Using Health Equity to support Families of CYSHCN
• Cultural Competency Check-up
• IDEA i3 educational resources for families of CYSHCN
• DHS Foster Care System
• Family Experiences with Iowa’s Intermediate Care Facilities
• Ethical Decision-Making in Practice
• Promoting Resilience & Hope in Families

 

Policies and procedures for the Family Navigator Network were determined through a Family Navigator Network Leadership Team, and the Family Advisory Council helped to determine priorities and best practices.

 

The Family Advisory Council included 13 members from across the state, with quarterly meetings held via teleconference. A sample of accomplishments of the Family Advisory Council included the following:

 

• Advised on creation of Youth Advisory Council
• Advised on development of Health Equity Committee
• Advised on transition services for CYSHCN
• Held a legislative forum to discuss advocacy and new legislation
• Held a question-and-answer session with an Area Education Agency Family-Education Coordinator to address questions/concerns specific to special education and education in general

 

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 2021 cohort ran from March through June and included 88 hours of trainings plus work with a mentor. This cohort comprised ten family leaders. Outreach to traditionally underserved communities were successful and the 2021 cohort included three participants who requested and were provided with in-person language interpretation and translated materials. As part of this training, a community service project is developed. In 2021, projects included building awareness in the juvenile courts system for those with intellectual disabilities or mental health diagnoses; communication and outreach tools to increase awareness for proposed legislation; developing procedures for increasing transparency in special education classrooms; building support and sharing resources for Hispanic families around transition to adulthood; and more.

 

Additionally, in FFY2021, the Iowa Family Leadership Training Institute held a family leadership webinar series entitled “Empowering Family Leaders.” This included nine 60-minute sessions that included 15 family presenters from different backgrounds, including individuals from underrepresented communities. In total, there were 68 participants, 25% of whom were from underrepresented backgrounds. Participants were from both rural and more urban geographical backgrounds and had children with a wide range of special health care needs, including Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder, genetic syndromes, deafness, Down Syndrome, Intellectual Disability, Cerebral Palsy, Fragile X, and Developmental Disability. The topics included:

 

• Family Panel: stories of hope
• Leading with a health equity lens
• Cultural stories from the road
• Systems Thinking: Habits for Family Leaders
• Facilitation Tips & Tricks
• Shared Decision-Making: Families as Experts
• Elevator Speeches for Improving Advocacy
• Resonant Leadership: Letting your Values Lead
• Family Panel: stories of inspiration

 

Family leadership trainings are available with English/Spanish subtitles on a playlist on the Iowa Family Leadership Training Institute’s YouTube page: https://www.youtube.com/playlist?list=PLRKfFV9Q8S1vmnjnfhoOUsQngW2Lwpp6C

 

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. A Digital Storytelling training was held in-person in June, 2021. This session included 6 participants from across the state, including one from a traditionally underserved racial or ethnic background. Trainees were parents or caregivers of children with a variety of special health care needs diagnoses. Links to Digital Stories can be found here: https://www.youtube.com/channel/UC7quIMTac-JS9PuC_KpPQAg/videos.

 

In addition, DCCH participated in the Family Peer Support Specialist trainings, including online and face-to-face components. In FFY2021, 17 family peer support specialists were trained.

 

Shared Decision Making

 

DCCH prioritized the education of families regarding Shared Decision Making through a number of channels including a summer webinar series for families. The presenters were two family members, both of whom had experiences when Shared Decision Making worked well, and times it did not work well. Spanish language interpretation was provided. A digital story about Shared Decision Making was created by DCCH and is featured on the DCCH YouTube channel: https://www.youtube.com/watch?v=KM7zXCcXv4c

 

A family member provided a presentation on Shared Decision Making as a part of Iowa Family Leadership Training Institute in April 2021. Ten participants attended this training and were encouraged to lead other families in understanding the benefits of Shared Decision Making.