Title V CYSHCN Programs Advancing the System of Services for CYSHCN: From the Field

The National Center for a System of Services for CYSHCN supports state/jurisdiction Title V CYSHCN programs and their partners in advancing the system of services for CYSHCN by offering technical assistance, tools, training, and connections to support care for all children and youth with special health care needs (CYSHCN) and their families.  

Peer-to-peer connections and mentoring are key methods programs can use to learn and apply activities in their own state/jurisdiction. This page features vignettes from Title V CYSHCN programs for quick reference and to elicit further connection and conversation. These vignettes focus on highlighting programs addressing emerging policy issues, priority needs and embodying cross sector partnerships that all align with the principles and strategies to advance the system of services for CYSHCN. Vignettes are identified by the National Center through technical assistance activities and are not an exhaustive list of national activities. Explore this section to learn about the different activities and contact information for the featured Title V CYSHCN program to connect for more information.   

The Arizona Title V CYSHCN Program is advancing policy and systems change efforts by establishing an Engaging Families and Young Adults Program to engage advisors with lived experience to inform Title V-funded work. They are finalizing a policy and procedure manual to support the integration of these advisors across all program areas. Additionally, they have expanded the involvement of family and young adult advisors statewide, implementing the program across 14 counties. For more information, please Contact Us. 

The Colorado Title V CYSHCN Program has been leading innovative policy and systems change efforts in their state through the development of a statewide electronic closed-loop referral system for developmental screening and referral to Early Intervention, participating on Medicaid policy workgroup to inform requirements and standards for Medicaid contractors, and a CYSHCN decision tool designed to help agencies reassess their roles in enabling and population health services for CYSHCN. For more information, please Contact Us. 

The Iowa Title V CYSHCN Program integrated a national framework for CYSHCN and the National Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0 into its needs assessment process to guide its next five-year action plan. Data collection was structured around the national framework for CYSHCN with analysis and reporting aligned to the National Standards for a System of Services for CYSHCN. The Iowa team identified priorities that aligned with the National Standards for the system of care for CYSHCN, including affordable insurance coverage, and evidence-based care, along with core domains tailored to emerging needs within their state, such as access to care, medical home, community-based services and supports, and transition from pediatric to adult-centered care. This approach offers a practical framework for prioritizing goals, objectives, and strategies. To learn how this comprehensive approach can support other state Title V programs in planning and tracking progress effectively, please  Contact Us.  

The Rhode Island Title V CYSHCN Program is actively working to create incentives for clinicians to offer key transition preparation services as part of Early and Periodic, Screening, Diagnosis, and Treatment (EPSDT) using Medicare rates applicable at the time of implementation. These services will include readiness assessments, education/counseling, medical summary preparation, and, for youth with serious medical/developmental/behavioral/social needs, joint telehealth visits. Guidance will be provided to managed care organizations (MCOs) and clinicians about this new payment opportunity, alongside plans to explore a health care transition (HCT)/EPSDT performance improvement project to enhance transition-related care. For more information, view the tip sheet developed by The National Alliance to Advance Adolescent Health/Got Transition titled, Paying For Health Care Transition Services Under Medicaid’s Early and Periodic, Screening, Diagnosis, and Treatment (EPSDT) Benefit: Rhode Island State Example or Contact Us. 

The Wyoming Title V CYSHCN Program used the National Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0 to identify areas for improvement within its CYSHCN system of care. The program also launched their needs assessment to align with the national framework for CYSHCN. This revealed key gaps in access to care, mental health coverage, medical equipment support, and addressing families’ basic needs (i.e., housing, food, etc.). By leveraging the framework strategies and enhancing family engagement efforts, the Wyoming team is using these insights to strategically prioritize resources to address the gaps identified. For more information, or if you're interested in sharing your state’s Title V CYSHCN Program efforts, please Contact Us. 

Interested in sharing your state’s Title V CYSHCN Program efforts? Submit a short blurb about the important work your state is doing here.