October 6, 2021



Click here: Final White Paper

Next Steps

Findings from the Path-4CNC virtual convenings highlight next step opportunities for key stakeholder groups to improve systems of care for CCHN and their families in NC. The following four cross-sector initiatives are examples of how stakeholder groups in NC can build on the convenings to address the most important and urgent priorities of those with lived experience in the system of care for CCHN.

Next Step Initiative Example 1: Make Families Partners, not just Clients, in the System of Care

Inclusion of families in all aspects of the system of care and development of formal roles for families could deliver health and economic benefits, and could alleviate workforce and coordination challenges faced by service sectors.

ACTION A: Recognize and financially support the work of family members as in-home care providers and peer supports for other parents.

ACTION B: Invite and empower family representatives to participate in decision-making at all levels of the system of care.

Next Step Initiative Example 2: “Professionalize” the Complex Care Workforce

Front-line service providers (e.g., private duty nursing, home health, families) provide the majority direct care for CCHN, yet access to training and professional networks to grow and thrive in their work are lacking.

ACTION A: Enhance training and support for front-line care providers – e.g., professional networking opportunities, training and technical assistance in partnership with children’s hospitals and academic centers.

ACTION B: Incentivize careers focused on the care of CCHN – e.g., loan repayment programs, supplemental payments for direct care providers.

ACTION C: Develop and test new roles – e.g., cross-sector integration facilitators and transition coaches who can serve as single points of contact.

Next Step Initiative Example 3: Create Shared Purpose to Improve the Availability, Quality, and Outcomes of Complex Care

Families and service providers from across sectors experience challenges securing needed resources to meet CCHN needs. Innovative financial supports, collaborative partnerships that build complex care capacity, and shared resources are needed to improve equity in the availability, quality, and outcomes of community-based services across the diverse range of places where CCHN live.

ACTION A: Enhance the capacity of community-based clinics to deliver complex care – e.g., dedicated clinic-based care coordination staff, leverage telehealth for shared visits with both community providers and tertiary care specialists.

ACTION B: Create tools that enhance visibility of existing resources and facilitate access to shared resources – e.g., comprehensive resource directory, inter-agency collaboration and pooling of shared resources towards common objectives to enhance impact and reduce redundancies in care.

Next Step Initiative Example 4: Optimize Information Technology

Information technology has potential to facilitate efficient linkages across the system of care for CCHN, break down siloes between information systems, and time and effort spent on sharing information using manual, paper-based methods.

ACTION A: Invest in secure data-sharing and communication linkages between systems that commonly share information – e.g., dedicated clinic-based care coordination staff, leverage telehealth for shared visits with both community providers and tertiary care specialists.

ACTION B: Use new telehealth capabilities to link nodes in the system of care in real-time – e.g., real-time telehealth video communication between referral providers and intake coordinators to simplify communication and reduce reliance on phone and fax.

4CNC will sustain momentum generated by the Path-4CNC convenings by:

  • Facilitating cross-sector collaboration between convening participants and stakeholders across NC that can move forward next step initiatives
  • Connecting project leaders with patients and families with lived experience for project co- design and conduct
  • Linking 4CNC’s future work with strategic priorities and strengths of key state, regional, and community/local institutional partners