IIAM (Important Information About Me): A Novel Communication Tool for Children with Neurodevelopmental Disabilities
In 2010, an intelligent 27-year-old man with cerebral palsy and limited ability to communicate his needs was admitted to a hospital for a surgical procedure. No one at the hospital asked him about his capacity to make decisions. Although fully continent, he was unable to communicate this, and was placed in diapers until discharge. The experience was humiliating for the patient and underscored the need for better communication tools for people with disabilities in similar circumstances. In 2011, a multidisciplinary group at Kennedy Krieger Institute and Johns Hopkins University created IIAM (Important Information About Me) to ensure no one need relive the experience of this man.
IIAM began as a paper document that served as a “passport” of basic personal, social, and medical information for individuals with disabilities and their families. The creators of IIAM recognized that people with neurodevelopmental disabilities often have complex medical histories and long-term care needs that are difficult to share with others due to challenges in communication, cognition, or motor function, as well as the time constraints of a fast-moving society. IIAM provides readers with information about an individual’s abilities, daily needs, and therapeutic and medical care.
The IIAM App
Response to the paper IIAM was so enthusiastic that the IIAM team (pictured left) developed an expanded electronic version that will launch on the Apple app store in April 2015. The IIAM app is intended for children and adolescents with neurodevelopmental disabilities and their families. It is the only iPad app that empowers individuals with disabilities with the tools to communicate who they are and their individual needs. IIAM is designed to be a simple, practical tool to organize pertinent information.
With IIAM, users can:
- Compile a medical history
- Express behavioral and social information such as coping mechanisms, feeding, communication, and self-perception of disability
- Embed helpful photos and video
- Set medication and appointment notifications
IIAM Co-Inventor & Medical Student
Johns Hopkins University School of Medicine
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A free resource that provides access to information and support for individuals and families living with developmental disabilities.