New Resources - Supplemental Learning: Children with Special Healthcare Needs and Chronic Illness


Children with Special Healthcare Needs and Chronic Illness


Section Contributors: Angela Mazur and Jori Bogetz


Online Resources:


General Information and Guidelines


a. Site for the Association of Academic Physiatrists with references and educational and policy resources.


  1. Site for The Annie E Casey Foundation with site specific information regarding CSHCN by state and state resources


  1. Site for National center for Medical Home Implementation.  This site has resources for residents and facultyin creating medical homes, implementing medical homes in your practice and evaluation tools;  links to AAP Community Pediatrics Curriculum.


Teaching About Pediatric Chronic Illness


  1. Jackson J, Albertini L. Caring for Children with Chronic Health Care Needs: An Introductory Curriculum for Pediatric Residents. MedEdPORTAL; 2012. Available from:


Introductory curriculum developed to teach pediatric residents how to serve as the medical home for children with special health care needs (CSHCNs). This resource includes an instructors' guide, worksheets to help guide pediatric residents as they explore local community resources, medical subspecialties, and other health care resources utilized by CSHCNs, a suggested selection of online learning modules for residents' independent study of various topics related to the medical home and CSHCNs, and a self-reflection exercise following course completion.


  1. Collins L, Arenson C, Rattner S, Wallock S, Umland E, Hewston L, et al. The Health Mentors Program: A Longitudinal Chronic Illness Mentorship Program. MedEdPORTAL; 2009. Available from:


The Health Mentors curriculum was created to familiarize students, through experiential learning, with the following key elements pertaining to team-based, patient-centered care: placing chronic illness into life context, obtaining a comprehensive health history, access to care and systems barriers, patient expectations of healthcare providers, professionalism, developing a wellness plan, polypharmacy and adverse drug reactions, self-management and patient education, and patient safety.





Background and Epidemiology


  1. McPherson M, et al. A New Definition of Children With Special Health Care Needs. Pediatrics 1998;102;137.


Sentinel paper that defined Children with Special Healthcare Needs. Provides a historical perspective about this population and gives recommendations to guide public program planning.

  1. Di Caprio JJ, et al.  Culture and the Care of Children With Chronic Conditions: Their Physicians' Views. Arch Pediatr Adolesc Med, October 1, 1999; 153(10): 1030 to 1035.


  1. Purvis, P. & Whelan, R.J.  (1992). Collaborative Planning Between Pediatricians and Special Educators.  Pediatric Clinics of North America.  39:3, 451 to 469.
  2. Peterson-Carmichael S, Cheifetz I. The Chronically Critically Ill Patient: Pediatric Considerations. Respiratory Care. 2010. 57 (6): 993-1003.

General Information and Guidelines


a.        Committee on Children With Disabilities. General Principles in the Care of Children and Adolescents With Genetic Disorders and Other Chronic Health Conditions. Pediatrics 1997;99;643.


b.       Council on Children With Disabilities. Provision of Educationally Related Services for Children and Adolescents With Chronic Diseases and Disabling Conditions. Pediatrics 2007;119;1218.


  1. Murray, John S. Disaster Preparedness for Children with Special Healthcare Needs and Disabilities. Journal for Specialists in Pediatric Nursing. 2011. 16: 226-232. 

Teaching About Pediatric Chronic Illness

a.        Nazarian BL, et al.  Identifying what pediatric residents are taught about children and youth with special health care needs and the medical home. Pediatrics, 126 (SUPPL. 3), S183-S189.

Needs assessment conducted through faculty and resident interviews on training on children with special healthcare needs. Found that most experience with special needs children is inpatient, but most teaching is outpatient. Recommended home/community visits, inclusion of complex patients in residents continuity clinic panels and enhanced simulation/role playing.

b.       Klitzner TS, et al. Benefits of care coordination for children with complex disease: A pilot medical home project in a resident teaching clinic. Journal of Pediatrics, 156(6), 1006-1010.

Description of training program for residents at an academic institution for children with special needs. Residents who participated received training on medical home principles and followed a complex pediatric patient. Families received mentorship by a family liaison who was a parent of a complex child. Program reduced emergency room visits for participating families.

  1. Children and Youth With Disabilities and Public Health: A Model Syllabus for Health Professionals, Noyes-Grosser, Donna M. PhD. Infants & Young Children. Issue: Volume 20(3), July/September 2007, p 202221 Copyright: ©2007Lippincott Williams & Wilkins, Inc. Publication Type: [Article]. ISSN: 0896-3746 Accession: 00001163-200707000-00003

This model syllabus is primarily designed as a survey course to provide students in schools of public health with a broad-based overview of public policies, service delivery systems, and family-centered approaches to care for children and youth with special healthcare needs. This model syllabus could also serve as a framework for a survey course for students in medical schools and schools of allied healthcare professionals, and other professional development. programs for individuals in health, human service, and education professions

Specific Therapies and Treatments for CSHCN


  1. Molnar G.E., Alexander M.A., Alexander N.  Pediatric Rehabilitation, 3rd edition, Hanley & Belfus, 1998.


  1. Ylvisaker M.  Traumatic Brain Injury Rehabilitation:  Children and Adolescents, 2nd edition, Butterworth Heinemann, 1998.


  1. Semrud Clikeman, M.  Traumatic Brain Injury in Children and Adolescents:  Assessment and Intervention, Guilford Press, 2001.


d.       Elias, Ellen Roy, Nancy A. Murphy and the COUNCIL ON CHILDREN WITH DISABILITIES. Home Care of Children and Youth With Complex Health Care Needs and Technology Dependencies. Pediatrics 2012;129;996.


The Physician and Patients Perspective


  1. Drummond A, et al.  Coping Among Parents of Children With Special Health Care Needs With and Without a Health Care Home. Journal of Pediatric Health Care. 26.4 (July-August 2012): p266.

b.       Cohen E, Friedman, J. N. (2012). Caring for children with medical complexity: Definitions, challenges and solutions. Current Pediatric Reviews, 8(2), 93-102.

c.        Cohen E, et al.  (2011). Hospital-based comprehensive care programs for children with special health care needs: A systematic review. Archives of Pediatrics and Adolescent Medicine, 165(6), 554-561.

d.       Crawford M. (2011). Pediatrics looks ahead to the medical home. Health Progress (Saint Louis, Mo.), 92(3), 6-9.

e.       Guralnick MJ. (2012). Preventive interventions for preterm children: Effectiveness and developmental mechanisms. Journal of Developmental and Behavioral Pediatrics, 33(4), 352-364. Retrieved from

  1. Kuo DZ, et al. A National Profile of Caregiver Challenges Among More Medically Complex Children with Special Health Care Needs. Arch Pediatr Adolesc Med. 2011 Nov;165(11):1020-6.

The Medical Home and CSHCN

  1. Homer C. et al. A Review of the Evidence for the Medical Home for Children With Special Health Care Needs. Pediatrics 2008;122;e922.


This study looked at 33 articles about 30 distinct studies on the medical home. It found moderate evidence to support a medical home for children with special healthcare needs due to a positive relationship between the medical home and desired outcomes, such as better health status, timeliness of care, family centeredness, and improved family functioning


  1. Cooley WC, McAllister JW. Building Medical Homes: Improvement Strategies in Primary Care for Children With Special Health Care Needs. Pediatrics 2004;113;1499.



  1. American Academy of Pediatrics, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home. Pediatrics. 2002; 110 :184 to 186.


This policy statement established importance of medical home for children with special needs and that care should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. Recommended that the physician known to child and family and should be able to develop a partnership of mutual responsibility and trust.

d.       Dehnel P, et al.  (2010). Building a home. twenty tips for creating a medical home. Minnesota Medicine, 93(1), 32-35. Retrieved from   

e.       Holtrop  JS, Jordan TR (2010). The patient-centered medical home and why it matters to health educators. Health Promotion Practice, 11(5), 622-628. Retrieved from

f.         Kim GR, et al. (2011). Policy statement - Health information technology and the medical home. Pediatrics, 127(5), 978-982.

g.        Trivedi HK, et al. (2010). Pediatric medical home: Foundations, challenges, and future directions. Child and Adolescent Psychiatric Clinics of North America, 19(2), 183-197.

h.       Trivedi HK, et al. (2011). Pediatric medical home: Foundations, challenges, and future directions. Pediatric Clinics of North America, 58(4), 787-801.

The medical home concept has been in existence since the late 1960s and has recently been significantly broadened to encompass comprehensive primary care for all patient populations throughout the lifespan. This article provides (1) a review of the foundations and evolution of the medical home concept; (2) an analysis of patient/family, provider, and systemic challenges to developing an effective pediatric medical home particularly in relation to children's mental health needs; and (3) a discussion of future directions for its further adoption and successful implementation.