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Knowledge Gaps in the Care of Children with Medical Complexity and Neurodisability

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Panelists discussed findings from a 2020 international study (PDF) that identified clinical research questions related to children with medical complexity, including: irritability and pain, child mental health, disorders of tone, poly-pharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. Panelists also reflected on topics the study may have missed, the overall importance of family involvement, and how to start addressing the topics identified.

This webinar is part of a 10-part seminar series entitled, Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities and Disabilities (C6). The series is led by complex care pediatricians from the Hospital for Sick Children (SickKids) and Lurie Children’s Hospital, and representatives from Family Voices.

The C6 seminar series is funded through a grant from the Lucile Packard Foundation for Children’s Health.

See recaps of other seminars in this series:

Webinar Recording

Download Webinar Slides Download 2020 International Study

Speakers

Eyal Cohen, MD, M.Sc., FRCPC

Program Head of Child Health Evaluative Sciences at SickKids Research Institute and Co-Executive Director of the S.H. Leong Centre for Healthy Children

Dr. Cohen co-founded the Complex Care Program with his colleagues in the Division of Paediatric Medicine at the Hospital for Sick Children (SickKids) in Toronto, Canada. He is an applied child health services and policy researcher. His program of research focuses on improving outcomes for children with medical complexity (CMC) and their families. Dr. Cohen's team is developing, evaluating and disseminating a number of evidence-based interventions aimed at improving health outcomes of CMC, providing caregiving supports for families, and mitigating unnecessary health care expenditures.

Catherine Diskin, MB, BCh, BAO, MSc, MRPCI (Paeds)

Staff physician at the Hospital for Sick Children (SickKids)

Dr. Diskin focuses on exploring the research priorities for children with medical complexity and neurologic impairment. She is developing an interest in postgraduate medical education as related to complex care. She has a subspecialty interest in neurodisability and was the first National Lead NCHD (resident) in Ireland championing doctor engagement with the health service. She earned a masters in Health Services Management from Trinity College Dublin, and her dissertation focused on the early clinical experience of pediatric trainees.

Tara Haynes, BSc

Family Voices Manager at RI Parent Information Network (RIPIN)

Tara is the mother of 3 children: Andrew, 13, who is has an undiagnosed neuromuscular condition which keeps him very limited in a physical capacity; Shamus, 9, and Grace, 6. Tara has expertise in dealing with systems of care for medically fragile children, as she has been caring for her son Andrew who is trached, on a ventilator, gtube fed, and nonambulatory. She has been working for RIPIN for over 10 years. She assists families with children with special health care needs to receive family-centered care, access services available, and help them advocate at the local, state and national level to create policies and awareness around needs and accessibility. Tara sits on many committees and workgroups providing the parent perspective and advocating for families to create better outcomes. In 2018, she was awarded RI Caregiver of the Year for her role as a mother to Andrew and her tireless advocacy for all RI families.

Debbi Harris, MS, MA

Director of the Board at The Arc of the United States

Debbi is a Director for the Board of The Arc US, a family navigation specialist for Family Voices of Minnesota, a family leader for the Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity (CMC), and a Children and Youth with Special Health Care Needs National Research Network (CYSCHNet) partner. Debbi is also a public policy advocate, working with the national Workers Advisory Group (WAG) for Paid Leave and the National Caregiver Advocacy Collaborative of the National Alliance for Caregiving. Debbi holds an M.S. in Health Science Administration, and an M.A. in English and Creative Writing, with a focus on Nonfiction, Narrative Medicine from Hamline University. She has published in Today’s Caregiver magazine, Kaleidoscope, Existere - Journal of Literature and Arts, JAMA Pediatrics as a co-author, and has co-authored a manuscript on COVID-19 and children with disabilities in the Journal of Pediatric Rehabilitation Medicine.

Related Grants

Addressing Clinical Challenges in the Care of Children with Neurodisability and Medical Complexity

Children with medical complexity often have multi-system involvement and multiple comorbidities, leading to challenges in providing care. Many of these challenges must be managed both...

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