The "Who I Am" Form: A Tool for Hospitals and Providers Caring for Patients with IDD

Lisa Goldman – Consultant, Healthcare Ethics, Atlantic Health System; Yvette Vieira, MMH, HEC-C – Senior Manager, Palliative Care and Ethics, Medicine Service Line, Atlantic Health System

Abstract: Patients with intellectual and/or developmental disabilities (IDD) are four times as likely than those without to be inadequately or inappropriately treated by a healthcare professional. The "WHO I AM" form is a low tech and cost-effective tool developed by individuals with IDD and their care partners, intended to guide healthcare professionals in delivering informed, quality care to individuals with IDD in a hospital setting. Care partners included in the development of the form work directly with IDD patients and families and include representatives from academia, community advocacy groups and health care Ethics. All are unified in their recognition of the need to reduce misunderstandings, treatment, and communication errors for patients with IDD.

The form (shared during presentation) is a two- sided one-page form that is to be completed before or immediately upon admission to the hospital by the patient and/or their advocates (such as parents, legal guardians, or care facility staff). It provides quick, accessible information pertinent to any healthcare provider or team member interacting with the patient and is designed to include critical information that would be essential in an urgent situation such as emergency contacts, communication needs and important care directives. It then provides information on individualized preferences such as particular sensory needs and insight into certain likes, dislikes, habits or preferences.

Barriers and proposed solutions to implementation of the form within diverse hospital systems as well as ideas for expanding the use of the form to include additional patient populations such as the elderly will be discussed.

Keywords: Communication tool for patients, Reduce patient /provider communication errors, Helping providers to understand their patients