End of Life and People with Intellectual and Developmental Disability: Contemporary Issues, Challenges, Experiences and Practice

This book on end of life examines how to include people with intellectual and developmental disability in the inevitability of dying and death. Comprising 17 chapters, it addresses challenging and under-researched topics including suicide, do-not-resuscitate, advance care planning, death doulas and accessible funerals. Topics reflect everyday community, palliative care, hospice and disability services.

The book proposes that the rights of people with disabilities should be supported up to and after their death. Going beyond problem identification, the chapters offer positive, evidence-supported responses that translate research to practice, together with practice examples and resources grounded in lived experience. The book is applicable to readers from the disability field, and mainstream health professionals who assist people with disability in emergency care, palliative care or end-of-life planning

Roger J. Stancliffe, PhD FAAIDD FIASSIDD is Professor Emeritus, University of Sydney, Australia. His research aims to make a difference in the lives of people with intellectual disability. He co-edited a special journal issue on end-of-life, is past editor of the Journal of Intellectual & Developmental Disability, and received the AAIDD Research Award.

Michele Y. Wiese, PhD MAPS FASID is Adjunct Fellow, School of Psychology, Western Sydney University, Australia. She is also Honorary Senior Research Fellow at the University of Sydney, and Fellow of the Australasian Society of Intellectual Disability. Dr Wiese is consulting editor to three international peerreviewed journals.

Philip McCallion, PhD ACSW FAASWSW FIASSIDD FGSA Director/Professor, School of Social Work, Temple University focuses on caregiver support, dementia, palliative care and service systems. He is cofounder/ co-principal investigator/coapplicant of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging; and National Consultant on Intellectual Disabilities and Dementia, U.S. National Alzheimer’s and Dementia Resource Center.

Mary McCarron, PhD MA BNS RNID RGN FTCD is Professor of Ageing and Intellectual Disability at Trinity College University of Dublin, Ireland, and Executive Director of the Trinity Centre for Ageing and Intellectual Disability and the National Intellectual Disability Memory Clinic. She is Principal Investigator of The Intellectual Disability to the Irish Longitudinal Study on Ageing- IDS TILDA, and has led extensive longitudinal research in Ireland and internationally on ageing, dementia and end-of-life issues for people with an intellectual disability.