Roger J. Stancliffe PhD FAAIDD FIASSIDD is Professor of Intellectual Disability at the University of Sydney’s Centre for Disability Research and Policy. His applied research focuses on making a difference in the everyday lives of people with intellectual and developmental disability, including research on transition to work, community living, retirement, community participation, self-determination, ageing and end of life. He has published extensively and has presented papers at research conferences in five continents. Professor Stancliffe edited the Journal of Intellectual & Developmental Disability from 2003 to 2008. He is the recipient of the 2011 AAIDD Research Award. His most recent book is Transition to retirement: A guide to inclusive practice.
Session 1: End of life research and people with intellectual and developmental disability
Individuals with intellectual disability have the right to know about dying and death, but have few opportunities to understand or plan for end of life. This paper presents major findings from the developing field of end-of-life research. Barriers to full participation include protection and avoidance by caregivers, exclusion from research, information and activities. Many people have limited understanding of end-of-life issues.
Some research deals with overcoming barriers. For example, increased understanding requires repeated participation in conversations and activities about end of life. However, carers fear upsetting the person, so they avoid these situations. The limited past-research evidence suggests most people with intellectual disability can talk about dying and death without distress. I will report the first controlled research findings measuring the psychological effects of extended exposure to end-of-life conversations.
Assessments exist designed specifically for people with intellectual disability concerning understanding death, end-of-life planning, and fear of death. Other important assessments (e.g., suicidality) await development.
The paper will also examine research on challenging topics such as suicide and advance care planning. The presentation ends with proposals for future research and practice, including topics such as accessible funerals, and greater participation by people with intellectual disability.
Session 2: Retirement and people with intellectual disability
More adults with intellectual disability are living to and beyond the notional retirement age. Understanding retirement as withdrawal from paid work, this paper describes available research findings about retirement. Most studies concern withdrawal from sheltered employment.
In the US, most workers with intellectual disability retire in older age, although a small proportion continue working well beyond 65. Typically, retirement appears to be sudden, rather than a gradual reduction in work hours. Facility-based day programs have a higher participation rate in older age groups, revealing an increased reliance on facility-based services in retirement.
Part two of the paper reports on two controlled Australian transition to retirement interventions for older workers. The first involved people working in sheltered employment. Participation in mainstream community groups with support from trained mentors was found to be a viable option for developing a retirement lifestyle. There is an implementation resource (manual + video) based on this project: Transition to retirement: A guide to inclusive practice.
The second intervention is a recent Australian study that supported participation in mainstream leisure groups and volunteering, to provide a socially-inclusive retirement after a working life in mainstream employment.
Session 3: TEL: a free online resource on end of life and people with intellectual disability
This workshop will present an overview of how to teach people with ID about end-of-life. The session will focus on a demonstration of how to use the free online resource Talking End of Life…with people with intellectual disability (TEL) https://www.caresearch.com.au/TEL/ TEL features many short videos of real people with ID and disability support staff. These videos will be used to illustrate end-of-life issues and to demonstrate a range of teaching methods for use in everyday natural contexts.