CSHCN Application Year

Priority areas for CYSHCN identified through the Iowa Title V FFY21 Needs Assessment process included: 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 CYSHCN. DCCH is open to providing services, training, and advocacy to support all CYSHCN and their families in Iowa; populations of special focus include children with behavioral or mental health challenges, chronic and complex health needs, or developmental and intellectual disability.

Priority Need

Access to Services, Pediatric Specialty Providers, and Care Coordination (Oct 1, 2022 through Sept 30, 2023)

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

During FFY2023, DCCH will 1) provide access to specialty care through Child Health Specialty Clinics Regional Centers and satellite locations, 2) strengthen infrastructure and increase opportunities for specialty care through telehealth, and 3) support workforce development and integration opportunities for pediatric and sub-specialty providers for serving children with complex and/or mental health needs, and developmental and intellectual disabilities, and their families.

Access through CHSC Regional Centers

In FFY2023 DCCH’s existing regional network of Child Health Specialty Clinics Regional Centers (CHSC) and satellite locations will continue to provide family-centered care coordination, family support, systems navigation, and gap-filling clinical services. Access to interpretation and translation services for clinic visits and resources will build on the infrastructure provided through the University of Iowa Health Care (UIHC) system. The current framework incorporates multiple care delivery models including in person visits, telehealth and telephone visits, and communication through MyChart, which is part of the Epic Electronic Medical Record used by UIHC and CHSC. All Regional Centers include Family Navigators, Nurses, and Administrative staff. Many Regional Centers are staffed with Nurse Practitioners, Social Workers, and Dietitians depending on community needs and programmatic funding. CHSC Nurse Practitioners provide gap-filling specialty services that complement activities of local primary care providers while maintaining a medical home approach to care. CHSC Dietitians are available via telehealth primarily through funding from Early ACCESS (Iowa’s Part C Early Intervention Program); Title V funds supplement dietitian hours in order to provide access to dietitians for CYSHCN statewide who need this type of service. Social Workers are available for families who are part of CHSC’s Pediatric Integrated Health program or the Community Circle of Care program. These programs serve families from ten counties in Northeast and East Central Iowa.

DCCH will continue a focus on supporting family-centered goal setting activities during clinic visits in FFY2023. A structured family goal setting process began with the HRSA-funded Enhancing a System of Care for Children and Youth with Special Health Care Needs project that ended in 2017. Since then, Regional Center staff have continued to formally initiate, review, and document goals at each clinical visit. Staff development opportunities on family-centered best practices will continue to be offered to assist staff in coaching families to develop goals that are family-driven and tailored to family needs. Training topics will include trainings on providing culturally appropriate care, including the continuation of interpretation and translation services during clinic visits. Program staff will continue to review clinical goal setting data on a weekly basis and hold monthly consultations and data sharing with Regional Center and satellite location staff. FFY2023 will also include plans to develop a formal evaluation of the family goal setting program, including feedback from both DCCH staff and families served through clinical services.

Telehealth

DCCH has a state-wide telehealth network to support the care of CYSHCN in Iowa, particularly in rural areas. In FFY2023 DCCH will continue to align telehealth processes with new systems implemented by the broader University of Iowa Health Care system. This will allow for a streamlined system of scheduling and clinic workflows integrated within the electronic medical record. As DCCH aligns with this system, it is anticipated that this will promote increased use of the telehealth infrastructure through DCCH regional centers by pediatric specialty providers within the University of Iowa Stead Family Department of Pediatrics and Stead Family Children’s Hospital, which is Iowa’s only comprehensive children’s hospital.

Access to pediatric specialty care in Iowa is limited, especially in rural areas. In FFY2023 DCCH will explore new or expanded pediatric specialty care services through the CHSC telehealth network, addressing provider shortages and gaps in health care access across the state. This will include the identification of gaps in health care, continued collaboration with pediatric specialty care providers in the University of Iowa Health Care system and exploring supplementary funding opportunities; for example, in FFY2022 DCCH applied for the HRSA funding opportunity HRSA-22-098 - Enhancing Systems of Care for Children with Medical Complexity. Although DCCH was not awarded funding through this program, work on the proposal resulted in enhancing the relationship with the Continuity of Care Program in the Stead Family Children's Hospital that serves children with medical complexity.

Telehealth flexibilities authorized during state and federal emergency declarations have continued to allow for reimbursement for in-home telehealth visits. Additionally, recent state legislation in Iowa enacted in 2021 requires that telehealth services for mental health be reimbursed at the same rate as in-person mental health services. In FFY2023 DCCH Regional Centers will continue to be available as a resource for families that face geographic barriers to accessing care by providing in-home telehealth as an option for receiving care.

To further support families in increasing access to health care in FFY2023, DCCH staff will assist families in accessing MyChart, the platform used across the University of Iowa Health Care system, that enables them to receive care in their homes, view medical records, manage health information, and communicate with health care providers.

Health care provider workforce development

DCCH is committed to working toward strengthening medical home approaches to care for Iowa CYSHCN. DCCH will continue to provide opportunities for primary care providers to increase capacity for treating CYSHCN within their community-based practices. Through the Epic CareLink system, primary care providers statewide have access to University of Iowa Health Care pediatric specialty provider clinic notes for their referred patients. This includes DCCH provider notes, including those of the ANRPs, nurses, dietitians, social workers and Family Navigators. Workforce development initiatives for primary care providers will continue with online, and possibly in-person opportunities, depending on the COVID-19 pandemic situation. DCCH will continue to build on partnerships with professional organizations such as the Iowa Chapter of the American Academy of Pediatrics, the Iowa Association of Family Practitioners, the Iowa Physician Assistant Society, and the Iowa Chapter of the National Association of Pediatric Nurse Practitioners. Information will be provided to primary care providers including medical home approaches; treating patients with mental health screening, diagnosis, and treatment needs; family partnership; and culturally and linguistically appropriate care. For example, in FFY2022, Title V funds were used as foundational support and supplemented with grant and contractual funding to provide workforce development and offer no cost continuing education credits to primary care providers. Topics included Adverse Childhood Experiences, administering developmental screening tools, treatment of eating disorders, a 3-part series on supporting transgender and LGBTQ+ youth; relational health in primary care; shared decision making; and more. Webinars are archived and available online (https://chsciowa.org/programs/iowa-pediatric-mental-health-collaborative/webinars-primary-care-providers).

In FFY2023, DCCH will explore and implement activities that will enhance pediatric specialty provider understanding of family centered care, shared decision making, and culturally responsive care. As mentioned above, DCCH applied for the Health Resources Services Administration’s “Enhancing Systems of Care for Children with Medical Complexity” funding opportunity. During the application process, DCCH’s relationship with the University of Iowa Health Care systems that support providers of pediatric sub-specialty care was strengthened. Although DCCH did not receive funding for this project, a more formal plan for creating training opportunities for providers will be created.

Priority Need

Transition to Adulthood for CYSHCN (Oct 1, 2022 through Sept 30, 2023)

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

Families of youth with special health care needs across Iowa continue to express concern over the process of transitioning from pediatric to adult systems of care. FFY2023 will focus on a three-pronged approach for the Transition to Adulthood Priority Area. This approach includes 1) continuing to provide clinic-based transition to adult health care services to families of transition-aged youth, 2) working alongside families and youth to plan for the transition to adulthood, and 3) ensuring appropriate transition resources for families accessing CHSC Regional Center services.

Clinic-based services

Clinic-based transition to adult health care services will continue to be a priority in FFY2023. The systematic initiation, review, and documentation of transition plans will continue in all Regional Centers and satellite locations. Program staff will conduct monthly reviews of transition documentation and participate in data sharing and consultations with Regional Center staff. Ongoing staff capacity-building activities which began in FFY2020 will continue into FFY2023. This effort includes hosting webinars for DCCH staff on transition to adulthood topics identified by staff as areas of opportunity. DCCH will aim to continually gather feedback from clinical and family support staff to tailor trainings to topics they identify as necessary to best support transition-aged youth. DCCH staff will also have opportunities to receive trainings on the utilization of transition resources to best support the needs of families served through transition programming. The workflow behind the systematic initiation, review, and documentation of transition plans among transition-aged youth will continue to be reviewed to ensure consistency throughout Regional Centers and satellite locations. This will include reviewing workflows for serving families with enhanced support needs, such as those using interpretation services during clinic visits.

Working alongside families and youth

FFY2023 will include strategic efforts to work alongside and engage families in the process of planning for the transition to adulthood. This includes developing plans to formally assess family and youth satisfaction with the DCCH transition program. This feedback will help improve aspects of DCCH’s transition work and incorporate family voice in programmatic decision-making.

In FFY2022, DCCH’s first Youth Advisory Council launched. The Youth Advisory Council is designed to provide guidance to DCCH programming while helping youth develop leadership and self-advocacy skills. Eligibility for the Youth Advisory Council includes youth ages 14–22 years with special health care needs or the sibling of a child or youth with special health care needs. In FFY2023, planning will begin for the second year of the council. Two Young Adult Allies work with DCCH staff as part of the Youth Advisory Council Leadership team. Planning for the FFY2023 Youth Advisory Council will be based on the evaluation data from the first year’s participants.

DCCH will continue efforts to engage families and youth in all aspects of transition planning. This will include utilizing DCCH’s Family Advisory Council and Youth Advisory Council for feedback on this priority area and using family-centered best practices during in-clinic transition planning.

Access to appropriate resources

There will be a renewed focus on ensuring appropriate transition resources for families accessing Regional Center services in FFY2023. The DCCH transition to adulthood program uses Got Transition® as a guide for working with families. In FFY2022, DCCH updated their Transition to Adult Health Care Quick Guide based on the Six Core Elements of Transition. Got Transition® handouts were incorporated into the DCCH resource library and are used to train staff on the transition to adulthood. In FFY2023, DCCH plans for the continuous review of DCCH transition resources to ensure that culturally responsive information is tailored towards families of youth with complex and/or mental health needs. Program staff will regularly review transition resources from content experts, such as Got Transition®, and incorporate best practices into the DCCH transition resource library in an effort to reduce resource duplication.

Priority Need

Support for parenting Children and Youth with Special Health Care Needs (Oct 1, 2022 through Sept 30, 2023)

SPM 7: Percent of caregivers of CYSHCN who report overall satisfaction with support services received through Title V

Family support was identified as a significant need for CYSHCN during Iowa’s Statewide Needs Assessment process. In FFY2023, DCCH will continue to address this need by 1) providing family-to-family support to Iowa families of CYSHCN; 2) building appreciation for strengths and challenges for families across the state through advocacy and provider workforce development; and 3) building the infrastructure for strengthening family leadership capacity statewide. FFY2023 family support activities include a greater emphasis on building statewide capacity to support families from underrepresented backgrounds.

Family to Family Support

Family to family support activities will continue through DCCH’s existing Family Navigator Network, which includes 28 family navigators located in all Regional Centers and satellite locations, and available to families of CYSHCN statewide. Family Navigators are all parents or caregivers of CYSHCN, with additional training that enables them to provide emotional support, connections to community resources, and assistance with systems navigation for families of CYSHCN. Family navigators are all encouraged to receive Family Peer Support Services certification through the Iowa Board of Certification. All families of CYSHCN ages 0–21 in Iowa are eligible to receive services from a family navigator. Referrals to CHSC’s Family Navigator Network are made through a number of channels including Early Access, Iowa’s Regional Autism Assistance Program, primary care and specialty providers, the Integrated Health Home program through Iowa Medicaid, and word of mouth.

The Family Navigator Network will remain flexible in order to respond to challenges from the COVID-19 pandemic. In FFY2023 Family Navigators will receive training on resiliency and mental health, support for families of youth from underrepresented backgrounds, families in crisis, and families who are facing economic instability.

In recognition of the growing population of families from underrepresented backgrounds in Iowa, the Family Navigator Network is working with the DCCH Health Equity Committee to strengthen activities that will identify and support parents from these backgrounds. Activities from the Health Equity Committee’s workplan specific to the Family Navigator Network include: 1) developing partnerships within diverse communities and increasing family support services to underserved populations; and 2) recruiting and supporting ethnically diverse staff including cultural liaisons. DCCH has made progress through hiring family navigators from the Marshallese and Spanish-speaking communities who specialize in working with families from the Marshall Islands and families who come from Spanish speaking backgrounds. DCCH is using lessons that were learned from these experiences to strengthen capacity for working with other underserved communities, recognizing the need for family navigators to provide the highest quality of care through a best-practice, family centered, culturally responsive manner. DCCH also plans to continue building capacity for Family Navigators to support families of LGBTQ+ youth through training and outreach.

In order to ensure that family input is received for all initiatives, DCCH’s Family Advisory Council is supported by the Iowa Title V CYSHCN program. The role of the Family Advisory Council is to provide guidance to all DCCH activities, including family support. In FFY2023, the Family Advisory Council will continue to meet on a bi-monthly basis. DCCH is emphasizing the utilization of the Family Advisory Council to provide early input into all newly planned initiatives, and to receive feedback on existing programs. In addition to acting as advisors to DCCH, the Family Advisory Council will also advocate on behalf of Iowa’s families of CYSHCN through a state legislative forum. Designed as a bipartisan effort, the legislative forum will occur in partnership with Iowa’s Developmental Disabilities Council (DD Council). This forum is intended to raise awareness about how families of CYSHCN are impacted by policies created by the state legislature.

Advocacy and family support workforce development

Over the past few years, the Iowa CYSHCN program has strengthened capacity for training and workforce development to provide optimal support for families, and now includes a dedicated family training coordinator. In FFY2023, DCCH will continue to build workforce capacity to support families through trainings for providers on family centered care, culturally responsive care, and working with families of LGBTQ+ youth. Trainings will be targeted toward DCCH staff as well as pediatric primary care and specialty care providers. Additionally, leaders in state government will receive information about supporting families of CYSHCN through policies that have a positive impact on families. This will occur through a state Legislative Day on the Hill in Des Moines where legislators will learn about how they can support their CYSHCN constituents. Participants are graduates from the Iowa Family Leadership Training Institute and the DCCH Family Advisory Council. One of the DCCH ARNPs leads advocacy efforts for the Division at the local, state and federal levels, supporting other staff as they work with families around the state to advocate for CYSHCN with local legislators.

Family Leadership

Building family leadership skills and statewide capacity has been a focus of DCCH activities for many years. In FFY2023, DCCH will continue to implement programs to strengthen family capacity at all levels (Personal/Family, Community, and Policy). Formal trainings for families such as the Iowa Family Leadership Training Institute, Digital Storytelling, and Storytelling for Family Leaders will continue. The family leadership team is increasing capacity for these trainings by incorporating new trainers across the state. Storytelling is an important skill to help families focus their stories in a way that can provide the best avenues for advocacy and raising awareness. Digital Storytelling workshops will be offered two times during FFY2023. These are free three-day workshops designed to help families build and produce a 2–4 minute digital story. Examples of Digital Stories produced through this training can be found on the Storytelling for Families page of the DCCH-Child Health Specialty Clinics website: https://chsciowa.org/programs/storytelling-families. DCCH is actively working to identify Spanish speaking families to invite to this training in order to add this perspective to the Digital Storytelling library. DCCH will also work with the Iowa Leadership Education in Neurodevelopmental and Related Disabilities Program (ILEND) to include a digital story highlighting the advocacy needs specific to the African American community.

Additionally, a Storytelling for Family Leaders training will be offered in the fall of 2022. This training is designed to equip families of CYSHCN with the necessary skills to share their stories in a variety of settings and modes of delivery. This is intended to bring awareness and change to Systems of Care for CYSHCN. Participants work with a coach and a cohort of family storytellers to produce 10-minute stories to be used as part of their advocacy efforts.

The Iowa Family Leadership Training Institute was developed to provide parents and caregivers of CYSHCN the opportunity to develop leadership and advocacy skills. Now in its 7th year, the IFLTI leverages Title V block grant funding to train families to work with partners, build their own paths to leadership, advocate for other families, and prepare a community service project. IFLTI delivers this training through five weekend-long sessions. In FFY2023, IFLTI will be offered to parents or primary caregivers of children ages 3 to 19 years with special health care needs living in Iowa.

Family Peer Support Specialist trainings were developed by DCCH, the Iowa Department of Human Services, and the University of Iowa’s National Resource Center for Family Centered Practice. Family Peer Support Specialists draw on their own experience as a parent or primary caregiver of a child with special health care needs and may be employed at social service agencies, clinics, residential programs, and other community-based organizations. They may also serve on a variety of advisory boards and committees at local, state, and national levels. This training is one of the requirements to become a certified Family Peer Support Specialist. This year, the program transitioned from being administratively housed with DCCH to the National Resource Center for Family Centered Practice. DCCH is still involved with this program and provides two trainers to the program to facilitate and administer specific aspects of the program. DCCH is also currently working with agency supervisors to work on Family Peer Support Specialist retention and workforce.

Working directly to support families, advocating for family-centered care among the health care workforce, and building family leadership capacity are three strategies that DCCH will continue to implement in the upcoming fiscal year in order to support families and build family leadership capacity. This will be accomplished in partnership with families, and with an emphasis on increasing relationships with underserved and underrepresented families in order to achieve a strengthened System of Care for CYSHCN in Iowa.