Priority Need

Access to community-based services and supports, pediatric specialty providers, especially mental health providers, and coordination of care (Oct 1, 2023 through Sept 30, 2024)

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

Continuing the implementation of plans based on the comprehensive needs assessment completed in 2020, during FFY2024, 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 FFY2024 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 to focus on supporting family-centered goal setting activities during clinical visits in FFY2024. A structured family goal setting process began with the HRSA-funded Enhancing a System of Care for Children 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. The formal family goal setting process will continue into FFY2024, with a focus on continuing to support families in developing goals to best fit their unique needs. Professional development opportunities for DCCH staff will continue to be offered, with a focus on providing culturally appropriate care and exploring methods of integrating interpretation and translation services in family goal-setting activities. 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. The development of plans to formally evaluate the family goal setting program will continue into FFY2024, with a focus on collecting feedback from both Regional Center staff and families accessing clinical services. A formal evaluation of the Transition to Adulthood program in FFY2023 served as a model for seeking family feedback on programmatic activities. In FFY2024, DCCH will use a similar model to evaluate the effectiveness of family goal setting within its patient population.

Telehealth

DCCH facilitates a state-wide telehealth network to support the care of CYSHCN in Iowa, which is particularly important in rural areas.

In FFY2024 DCCH will continue to align telehealth processes with the broader health care system to improve and streamline workflows. Specific plans include transitioning to an Epic-to-Epic workflow that will allow the telehealth visit to be integrated into the University of Iowa Health Care electronic medical record. This will standardize the workflow for providers, making it easier to connect with patients through the DCCH Child Health Specialty Clinics Regional Centers. Plans are also underway to transition to joint scheduling for telemedicine appointments, which will allow for a more efficient scheduling process and improved coordination in scheduling pediatric specialty appointments.

Access to pediatric specialty care in Iowa is limited. In FFY2024 DCCH will continue to explore new opportunities for expanded pediatric specialty care services through the CHSC telehealth network, addressing provider shortages and gaps in health care access across the state. For example, DCCH is currently working on a pilot for implementation of a hypertension telehealth clinic in one regional center. If this pilot is successful, plans are to expand this service to other regional center locations based on patient need.

DCCH will investigate new ways to share information about access to pediatric specialty care and other services through telehealth. Investigations will focus on marketing and communication with providers and families about opportunities, available services, and access to pediatric specialty care through telehealth. 

Over the past several years, Title V funding has been supplemented with funding from the HRSA Pediatric Mental Health Care Access (PMHCA) award. This has allowed DCCH to improve access to telepsychiatry services for children and youth with ongoing mental health care needs. DCCH is currently applying for the PMHCA competitive renewal, and if successful, will continue to build on the telepsychiatry infrastructure in Iowa by expanding workforce and additional providers or additional telehealth time for existing providers.

Telehealth flexibilities authorized during federal emergency declarations through the first 3 years of the COVID-19 pandemic are winding down. DCCH is monitoring these changes, especially those happening after May 11, 2023 as the federal public health emergency expires. For example, the US Drug Enforcement Administration has proposed changes to prescribing controlled substances via telehealth. If these proposed rules go into effect, this will require changes to our current prescribing processes and procedures.

Health care provider workforce development

DCCH is committed to strengthening medical home approaches to care for Iowa CYSHCN. DCCH will continue to provide opportunities for health care providers to increase capacity for treating CYSHCN within community-based practices.

Iowa’s only comprehensive pediatric tertiary care provider, University of Iowa Health Care, provides pediatric specialty provider clinic notes for their referred patients through the Epic CareLink system. Primary care providers statewide have access to this system, including Child Health Specialty Clinic provider notes that are documented in Epic.

Workforce development initiatives for providers will be provided online, and there may be a return to in-person opportunities. 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.

Many prior workforce development opportunities were provided in partnership with the HRSA-funded PMHCA award. As noted above, this funding cycle ends in September, 2023. DCCH is preparing an application for the competitive renewal. If the application is successful, this funding will supplement Title V activities to promote workforce development opportunities for counsellors and therapists statewide through webinars and virtual conferences.

Priority Need

Transition to Adulthood for Children and Youth with Special Health Care Needs (Oct 1, 2023 through Sept 30, 2024)

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

Results from the 2023 evaluation of the DCCH program for transition to adult systems of health care showed that youth with special health care needs and their families continue to be concerned with the process of transitioning from pediatric to adult systems of care. FFY2024 will continue to focus on a three-pronged approach for the Transition to Adulthood Priority Area. This approach includes 1) providing clinic-based transition to adult health care services for transition-aged youth and their families, 2) working alongside youth and families to plan for the transition to adulthood, and 3) ensuring appropriate transition to adulthood resources for Iowa’s youth with special health care needs and their families.

Clinic-based services

In FFY2024, Child Health Specialty Clinics Regional Center staff will continue the systematic initiation, review, and documentation of DCCH’s transition checklist for every child 12 years of age or older seen in the Regional Centers. Program staff will conduct monthly reviews of transition documentation and participate in monthly consultations and data sharing with Regional Center staff. FFY2024 will include opportunities for ongoing workforce development opportunities, which began in FFY2020. This effort includes hosting webinars for DCCH staff on transition to adulthood topics. DCCH will continue to gather formal and informal feedback from clinical and family support staff through surveys and attending discipline-specific meetings to tailor training to topics they identify as necessary to best support transition-aged youth. FFY2024 will include an enhanced effort to collaborate with other program areas within DCCH, such as the Family Navigator Network, to develop transition training opportunities. This includes utilizing the existing Family Navigator Network training curriculum as a means for sharing transition to adulthood resources and best practices. Transition to adulthood clinical workflows will continue to be regularly reviewed to ensure consistency throughout Regional Centers and satellite locations. Efforts 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

FFY2024 will continue to include strategic efforts to work alongside and engage youth with special health care needs and their families in the process of planning for the transition to adulthood. Plans for FFY2024 include improving aspects of DCCH’s transition work based on feedback families provided during the FFY2023 evaluation of transition to adulthood program.

In FFY2022, DCCH’s first Youth Advisory Council launched. The Youth Advisory Council is designed to provide guidance on DCCH programming while helping youth develop the leadership and self-advocacy skills necessary for the transition to adult health care. Eligibility for the Youth Advisory Council includes youth ages 14-22 years with special health care needs or the sibling of a youth with special health care needs. FFY2024 will include planning for the third year of the Youth Advisory Council, which is expected to launch in Spring 2024. A Young Adult Ally will work alongside DCCH staff as a part of the Youth Advisory Council Leadership team. Planning for subsequent council years will be based on evaluation data from previous year’s participants. Plans for FFY2024 include five council meetings, beginning in April 2024 and occurring monthly until August 2024. Council members’ identified needs will help determine meeting agendas and will include topics such as learning health care advocacy skills, introducing the transition to adulthood, and gathering feedback on DCCH’s transition to adulthood programmatic activities.

DCCH will continue efforts to engage families and youth in all aspects of transition planning. These efforts will include soliciting feedback from DCCH’s Family Advisory Council and Youth Advisory Council and using family-centered best practices during in-clinic transition planning.

Access to appropriate resources

The focus on ensuring appropriate transition resources for youth with special health care needs and their families will continue into FFY2024. The DCCH transition to adulthood program uses Got Transition® as a guide for working with families. In FFY2022, DCCH updated the 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. As the FFY2023 evaluation of DCCH’s transition program concludes, program staff will utilize feedback collected from families and DCCH staff to adapt transition resources to better reflect the needs of families of youth with special health care needs. Efforts will include a focus on ensuring that the available transition resources contain culturally responsive information, including a special focus on resources tailored towards families of youth with complex and/or mental health care needs. Program staff will continue to 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 duplication. In FFY2024, planning will begin for bringing DCCH transition resources to a state-wide audience, in hopes of serving as a systems-level resource for the transition from pediatric to adult health care systems. This will include efforts to renew relationships with On-TRAC for Health through Iowa’s University Center for Excellence in Development and Disabilities (UCEDD) transition to adult care resources program.

Priority Need

Support for parenting Children and Youth with Special Health Care Needs (Oct 1, 2023 through Sept 30, 2024)

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

Family support was identified as a significant need for CYSHCN during Iowa’s Statewide Needs Assessment process. Strategies in FFY2024, will build on past activities 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. FFY2024 family support activities will continue to emphasize support for families from underrepresented backgrounds.

Family-to-Family Support

Family-to-family support activities will continue through DCCH’s existing Family Navigator Network, which currently includes 28 family navigators. The Family Navigator Network is a key strategy for the Iowa CYSHCN program’s commitment to including family voice at all levels of decision making. 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. Families of CYSHCN statewide can access family navigators through each of DCCH’s Child Health Specialty Clinics Regional Centers and satellite locations.

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. Family Navigator Network leadership staff are facing challenges in providing support for families due to the increasing number of referrals into the network. This includes an increase in the number of referrals for children and youth with the most challenging mental and behavioral concerns. FFY2024 plans include increasing trainings for FNN staff that include supporting families with these challenges.

Family Navigator Network leaders will continue to work closely with the DCCH Health Equity Committee to strengthen activities that will identify and support parents from underrepresented 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 racially and ethnically diverse staff and exploring the use of cultural liaisons.

DCCH will explore opportunities to raise awareness about the availability of family navigators. DCCH will explore opportunities for partnerships with genetic counselors and local associations who put together informational packets for new parents.

The Family Navigator Network has been identified as an Emerging Practice in the Association of Maternal and Child Health Program’s (AMCHP) Innovation Hub. In order to move the Family Navigator Network to the next designation (Promising Practice), in FFY2023, DCCH is working with AMCHP to develop an evaluation plan for the Family Navigator Network. In FFY2024, DCCH staff plan to implement the evaluation plan. Results will be used to strengthen the network and will supplement the upcoming Title V Needs Assessment. Additionally, State Performance Measure 7 is designed to measure family satisfaction with direct services provided by DCCH through the family navigator network and other direct services.

DCCH’s Family Advisory Council is supported by the Iowa Title V CYSHCN program. The role of the Council is to provide guidance to all DCCH activities, including family support. In FFY2024, the Council will meet on a quarterly basis and agendas will emphasize 1) leadership education for family advisors, 2) providing early input into all newly planned initiatives, and 3) providing 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 “Day on the Hill” and a state legislative forum. The Day on the Hill allows Family Advisory Council members an opportunity to visit with state policy makers during the legislative session. Another effort, the legislative forum is designed as a bipartisan effort and will occur in partnership with Iowa’s Developmental Disabilities Council (DD Council). These advocacy opportunities are intended to raise awareness about how families of CYSHCN are impacted by policies created by the state legislature.

Advocacy and family support workforce development

In FFY2024, Iowa’s CYSHCN program will continue to build on existing infrastructure for training and workforce development.  DCCH will build workforce capacity to support families through trainings for providers on family centered care, culturally responsive care, and working with families of LGBTQ+ youth.  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 will include the DCCH Family Advisory Council and graduates from the Iowa Family Leadership Training Institute.

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. Although this program transitioned from being administratively housed with DCCH to the National Resource Center for Family Centered Practice, DCCH provides trainers to the program to facilitate and administer specific aspects of the program.

Family Leadership

Strengthening the infrastructure developing skills for family leaders will include formal trainings for families such as the Iowa Family Leadership Training Institute (IFLTI), Digital Storytelling, and Storytelling for Family Leaders. Developing stories can help families focus their stories to strengthen advocacy and awareness efforts. A Digital Storytelling workshop will be offered during FFY2024. Digital Storytelling is a three-day workshop offered at no cost to families, designed to 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 has made progress in expanding the reach of Digital Storytelling and is actively working to identify families from underserved communities to invite to this training in order to add more perspectives to the Digital Storytelling library.

Storytelling for Family Leaders 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. This training will be offered in FFY2024, and similar to the Digital Storytelling efforts, DCCH is working to expand its reach to more communities in order to include a variety of perspectives.

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 8th year, 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 at no cost to participants through five weekend-long sessions. In FFY2024, IFLTI will be offered to parents or primary caregivers of children ages 3 to 19 years with special health care needs living in Iowa. IFLTI has had success in including participants from underserved communities and will continue to develop these efforts. More information about IFLTI can be found on the DCCH’s Child Health Specialty Clinics website: https://chsciowa.org/programs/iowa-family-leadership-training-institute.