• Continue to identify the diverse field of NAPNAP members interested in the implementation of innovative pediatric health care delivery models for CYSHCN.
• Demonstrate to our members the value of SIG membership and recognize members for their contributions to the CYSHCN population.
• Encourage participation in e-community discussion board and quarterly virtual meetings on topics related to care of CYSHCN.
• Encourage scholarly activity related to best practices and care of CYSHCN.
• Support local and national organizations/communities specific to CYSHCN through volunteering of time and/or financial contributions.

The SIG has prepared these resource pages for families to help keep track of their child’s important health information and prepare for medical visits, scheduled hospitalizations and
emergencies.

Providers and patients can download the full toolkit or individual sections in the list of editable PDF documents to keep as digital files or complete and print to have hard copies available for health care, school  or social service appointments.

Full Patient Toolkit

Sections:

Title Page & Instructions
All About Me
My Typical Day
My Medical History
My Surgical History
My Healthcare Providers
My Medication Information
My Medical Equipment
My School Information
My Insurance Plan
My Nutrition Plan
My Appointment Plan
My Emergency Management Plan
My Hospital Stays
My Neurological System
My Ear Nose Throat System
My Pulmonary System
My Cardiac System
My Gastro System
My Kidney & Bladder System
My Musculoskeletal System
My Dermatological System
My Endocrine System
My Mental Health
My Sleep Information
My Pain Management

• Please visit the Journal of Pediatric Health Care to search for articles on this topic.
• Read our position statement on Children and Youth with Special Health Care Needs: Key Issues on Care Coordination, Transitions and Leadership.
• Gastronomy Tube Fact Sheet – this one page handout, created in collaboration with the Pediatric General Surgery SIG, provides patient families with necessary information about a gastronomy tube, including how to clean it and what to do if the tube comes out.
• Checklist for Primary Care Providers of Children with Cerebral Palsy is a quick reference guide for providers.
• Children and Youth with Special Health Care Needs (CYSHCN) SIG Award for Excellence in Doctoral Projects provides an annual monetary award of $250 to a selected recent graduate (within one year) of an accredited doctoral program whose scholarly project best exemplifies the current goals of our SIG. A second award will be made if the SIG budget has sufficient funds.
• Resources from Nemours KidsHealth:
  • Cerebral Palsy – for parents
  • Sickle Cell Disease – for teens

• American Academy of Nurse Practitioners’ (AANP) The Medical Home: What Is It? How Do Nurse Practitioners Fit In? 
• Investing in Maternal and Child Health: An Employer’s Toolkit – This toolkit is the culmination of a partnership between the Center for Prevention and Health Services at the National Business Group on Health and the Maternal and Child Health Bureau within the Health Resources and Services Administration.
• American Academy of Pediatrics (AAP) National Center of Medical Home Implementation 
• Medical Home Plus – Resources, Outreach and Community Based Support
• Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs
• Medical Home Model – a new online professional development course developed at the University of Colorado, College of Nursing and the Colorado Department of Public Health and Environment is available by clicking here and approved for Nursing Contact Hour Credit through the UC College of Nursing.