Background Materials

Recommended Reading

• Recognition and Management of Medical Complexity
  Dennis Z. Kuo, MD, MHS, FAAP, Amy J. Houtrow, MD, PhD, MPH, FAAP, COUNCIL ON CHILDREN WITH DISABILITIES
• A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health
  Elizabeth S. Barnert, MD, MPH, MS, Ryan J. Coller, MD, MPH, Bergen B. Nelson, MD, MS,Lindsey R. Thompson, MS, MPH, Thomas S. Klitzner, MD, PhD, Moira Szilagyi, MD, PhD, Abigail M. Breck, BA, Paul J. Chung, MD, MS
• Ethical Framework for Risk Stratification and Mitigation Programs for Children With Medical Complexity
  Chris Feudtner, MD, PhD, MPH, Theodore Schall, MSW, MBE, Pamela Nathanson, MBE, Jay Berry, MD, MPH
•  Out-of-Home Placement for Children and Adolescents With Disabilities— Addendum: Care Options for Children and Adolescents With Disabilities and Medical Complexity
  (NOTE: The full AAP report on out-of-home placement can be found in the additional references section below)
  Sandra L. Friedman, MD, MPH, FAAP, Kenneth W. Norwood Jr, MD, FAAP, COUNCIL ON CHILDREN WITH DISABILITIES

Questions to Consider

1) From your experience related to children with medical complexity (CMC), what outcomes should we strive for for children, families, and the system you work within?

• What existing programs/resources/etc. in Maryland facilitate achieving desired outcomes?
• What challenges/barriers prevent us from achieving such outcomes?

2) What policies/practices are you aware of that focus on placements, supports, and services for CMC in Maryland? What policies would be helpful?

3) What can we learn from other states in regard to placement, supports, and services for CMC? How should we move forward as a state?

Additional Helpful References

• Maryland Dept. of Health Task Force Report on Access to Home Health Care for Children and Adults with Medical Disabilities
• Models of Care Delivery for Children With Medical Complexity
  Elisabeth Pordes, MD, MPH, John Gordon, MD, Lee M. Sanders, MD, MPH, Eyal Cohen, MD, MSc
• Out-of-Home Placement for Children and Adolescents With Disabilities
  Sandra L. Friedman, MD, MPH, Miriam A. Kalichman, MD, and COUNCIL ON CHILDREN WITH DISABILITIES
• Home Health Nursing Care and Hospital Use for Medically Complex Children
  James C. Gay, MD, MMHC, Cary W. Thurm, PhD, Matthew Hall, PhD, Michael J. Fassino, MS, Lisa Fowler, BA, John V. Palusci, MBA, Jay G. Berry, MD, MPH
• Status Complexicus? The Emergenceof Pediatric Complex Care
  Eyal Cohen, MD, MSc, Jay G. Berry, MD, MPH, Lee Sanders, MD, MPH, Edward L. Schor, MD, Paul H. Wise, MD
• Children and Young Adults with Medical Complexity: Serving an Emerging Population
  A Pediatric Complex Care Association White Paper prepared for Centers for Medicare and Medicaid Services
• Experts’ Perspectives toward a Population Health Approach for Children with Medical Complexity
  Elizabeth S. Barnert, MD, MPH, MS, Ryan J. Coller, MD, MPH, Bergen B. Nelson, MD, MS, Lindsey R. Thompson, MS, MPH, Vincent Chan, Cesar Padilla, MSGH, Thomas S. Klitzner, MD, PhD, Moira Szilagyi, MD, PhD, and Paul J Chung, MD, MS