Resources
Online course
Understanding CHARGE syndrome
Understanding CHARGE Syndrome is a free online course offering quality education on the latest knowledge and research on CHARGE syndrome from the world’s foremost experts in the field. It will significantly raise awareness of CHARGE syndrome amongst health and educational professionals and will strengthen the capacity of families and care givers in supporting individuals with CHARGE syndrome. The course is always open, making it easy to access the information any time you need it.
You can complete the full course, over 6-8 weeks (2 hours per week, self paced).
CHARGE Syndrome Check-List: Health supervision across the life-span from head to toe
A comprehensive approach to health screening and management for individuals with CHARGE syndrome is essential. We developed a checklist organized by body system and age to guide the healthcare provider in their approach to care. The checklist was evaluated using a modified Delphi method to develop a final consensus.
By Dr Kim Blake
Publications
A Checklist of Educational Needs for Individuals with CHARGE Syndrome, 2018
This checklist could be used by a multidisciplinary team as a starting point for brainstorming possible services, for a school IEP meeting, or for a funding plan.
Authors: Lillian J. Slavin and Timothy S. Hartshorne
A Checklist of Educational Needs for Individuals with CHARGE Syndrome, 2018
Behaviour in CHARGE Syndrome, 2017
This article addresses how pain, sensory issues, and anxiety may impact the behavior of individuals with CHARGE syndrome, and how the development of self-regulation skills might help to mitigate some of the behaviors.
By Timothy S. Hartshorne
The education of learners with CHARGE syndrome, 2017
This research paper lists the potential learning characteristics of the learner with CHARGE and discusses the differences and similarities of learners with CHARGE syndrome, to learners from the deafblind community.
Author: Gail Deuce
Webinars
Victorian Deaf Education Institute seminar
Understanding Learning Challenges for Children and Young People with Multi-Sensory Impairments
Topics and time stamps
Effective strategies for supporting and improving educational and communication outcomes for multi-sensory impaired learners.
Professor Tim Hartshorne, Professor of Psychology, Central Michigan University
Time stamp: 00:07:50Intervention strategies within a multi-tiered system of support to students with multi-sensory impairments and ASD.
Professor Daniel Gadke, Mississippi State University
Time stamp: 01:38:02Explores the issues surrounding sexuality and wellbeing for students with multi-sensory impairments
Dr Kasee Stratton-Gadke Assistant Professor Mississippi State University
Time stamp: 02:31:02Multi-disciplinary assessments of students who are deafblind or have multi-sensory impairments
Professor Nancy Hartshorne, School Psychologist , Delta College, Michigan
Time stamp: 04:22:39Exploring issues around self-stimulation, self-regulation and multi-sensory impairment
David Brown, Deafblind Educational Specialist
Time stamp: 05:06:00
Tube feeding
The Blend
A magazine-style resource for people who are new to tube-feeding. It shares stories, tips and recipes from parents, and professionals in the tube-feeding space. Read it online or request a hard copy on the contact us page of the AusEE website.
Childfeeding.org
Includes info on what to expect in the early days, tips and tricks and short videos about tube feeding, to share with friends and family.