Practices may want to consider implementing the following system supports to improve care of CMC and their families: strengthening relationships, making your practice readily accessible, implementing a registry, utilizing electronic health records, developing a list of community resources, implementing payment and reimbursement mechanisms, recruiting practice team members to provide team-based care reassessment of practice changes.
Additional information about each system support and resources/tools to help with implementation within your practice are included below.
Relationships that are patient/family-centered and equitable.
- Providing Patient-and Family-Centered Care
- AAP Pediatrics Supplement: Shared Decision-making in Pediatrics
- Boston University Webinar: Caring for Children with Medical Complexity through Transformative Family Partnership
- WI Department of Health Services Goal Cards: A Manual for Providers and Teams
- Healthy Equity Requires Anti-ableism
- Words Matter: AAP Guidance on Inclusive, Anti-Biased Language
Ready access to a patient/family-centered medical home.
- Patient and Family-Centered Medical Home
- National Resource Center for Patient/Family-Centered Medical Home
- AAP Telehealth Playbook
- Got Transition
- Pediatric to Adult Care Transition Work Book
Registry to track CMC patients and assist with care coordination and care planning.
Electronic Health Records and patient portals to communicate between and among health care professionals and with families.
- Referrals and Test Tracking
- AAP policy statement on Health Information Technology and Medical Home
- Health Information Technology
- Selecting an EHR
- Patient Portals
- AAP Council on Clinical Information Technology
Knowledge of Resources within the community to support patients and families, including state Title V/CSHCN programs, early intervention services, school programs, home health care providers, recreational opportunities, and more.
- Care Coordination Resources
- Special Health Needs: Non-Medical Necessities Matter, Too
- Care Coordination Academy
Adequate Payment/Reimbursement for services provided.
- Principles of Child Health Care Financing
- Medicaid Policy Statement
- Financing of Pediatric Home Health Care
- Payment for Child Health Services
- Coding for After Hours and Other Special Services
- Coding for Care Management and Other Non-Direct Services
- Coding for Transition from Pediatric to Adult Health Care
- Telemedicine/Telehealth Coding for Children with Medical Complexity
Recruitment of a wide array of practice team members in building a practice’s capacity to care for CMC and their families in partnership with the broader community.
As the definitions and care standards for CMC are refined, reassessment and continuous quality improvement practices should be applied to incorporate new knowledge and ensure the needs of CMC and their families are being met.
- AAP Pediatrics Supplement: Building Systems That Work for Children With Complex Health Care Needs
- AAP Pediatrics Supplement: Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs
- AAP Council on Children with Disabilities (COCWD)
- AAP Section on Hospice and Palliative Medicine (SOHPM)
- Complex Care Journal
- Children and Youth with Special Health Care Needs National Research Network
- Lucile Packard Foundation for Children’s Health
- Academic Pediatrics Supplement: A National Health Systems Research Agenda for Children and Youth with Special Health Care Needs
- Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs
American Academy of Pediatrics