1. End of Life: The Role of the AUCD Network
Georgetown University, Center for Child and Human Development and School of Nursing and Health Sciences
End of Life: The Role of the AUCD Network
Genevieve Lai, Marisa Brown, Toby Long
Results
Discussion
Abstract
Processes have been created that facilitate self-determination, even for those with the most severe disabilities. End-of-life decision-making, however, is rarely discussed. The majority of people with ID have the capacity to make their own decisions. They can seek the counsel of significant others, family members, and friends when making difficult and complex decisions about their end-of-life care and decisions related to life-sustaining treatments.
People whose cognitive functions are very limited may never be able to express their preferences for these decisions. Family members and guardians benefit from strategies, activities, and tools that help them to prepare to make end-of-life decisions that reflect the personality, beliefs, and values of the people who are unable to make decisions for themselves. If a person has significant ID and is unable to speak or express their wishes for end-of-life care, guardians play an important role in making those decisions for them.
Advocating for people with disabilities and supporting those who advocate for themselves entails all aspects of a full and participatory life, including those difficult decisions that come at the end of life. The AUCD network plays an important, although underutilized role in supporting people with intellectual disabilities, their families, and guardians to make these difficult decisions and advance policies, practices, supports, and services for people with disabilities and their families in relation to end of life decision-making. 
Respondents (N=60; 88%return rate)
Eleven programs indicated they address end-of-life decision making
UCEDD: 2
LEND: 1
UCEDD/LEND: 8
Method of addressing end-of-life decision-making:
Providing individual patient/family support,
Providing resources on the website,
Training community providers
Respondents who do not address end-of-life decision-making (n=49)
Seven programs indicated that there was no faculty available to respond to the survey.
Ten programs collaborate with community partners
Types of Resources Provided  
End-of-life care is a complex moral issue. End-of-life decision-making resources for adults with intellectual disabilities may provide helpful information about the impact of developmental disabilities, home and community based services, hospice and palliative care, and end-of-life planning has on a person with I/DD, their families, and guardians. The purpose of this project was to determine what programs and/or resources AUCD network members offer to support people around end-of-life decision making.
Introduction
Decision-making is a fundamental right for those with and without disabilities. As people with intellectual disabilities are integrated within their communities, they are afforded expanded opportunities for decision-making. The overwhelming majority of people with intellectual disabilities have the capacity to make their own decisions. They can seek the counsel of significant others, family members, and friends when making difficult and complex decisions about end-of-life care and decisions related to life-sustaining treatments. However, there are people whose cognitive functions are so limited they may never be able to express their preferences for these decisions.
The Georgetown University UCEDD created a variety of activities and resources to assist family members and guardians to prepare for end-of-life decisions that reflect the personality, beliefs, and values of people who are unable to make decisions for themselves. The current study surveyed all UCEDD and LEND programs within the AUCD network to determine the extent that the network programs provide support and/or resources to community members. Findings indicate that few UCEDDs and/or LENDS support their constituents with resources, programs, or training. The poster will discuss challenges to UCEDDs and LENDs in this area, the types of resources available, and highlight successful programs created by network members.
Resources Provided
Programs
On-line resources 3
Training and Professional Development 5
Consultation to Providers or Family Members 7
Did not respond 1
Conclusions
The AUCD Network has the opportunity to support people with ID or other complex developmental disabilities, their families, and care givers to make informed end-of-life decisions respecting their beliefs, values, and wishes.
Challenges in Providing Resources (responses=13)
Methods
References
A survey was created and distributed to faculty from all UCEDDs and LEND programs (total programs=78). Names and s were found using the Association of University Centers on Disabilities (AUCD) on-line directory. The survey was created in Qualtrics and asked respondents whether or not their program addresses end-of-life decision making (Y/N). If responder answered “Yes”, they were directed to a series of questions regarding he types of resources provided. Responses were collected over a duration of 4 weeks, with reminders to non-responders sent twice within that time frame.
Stancliffe, R.J., Wiese, M.Y., & Read, S. (2017). Special Issue: End of Life and People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 30 (6)
Jenny Hatch Justice Project. (2013). Supported Decision-Making: An Agenda for Action. Available from:
Ouellette, A. (2011). The End of Life. In Bioethics and Disability: Towards a Disability-Conscious Bioethics. New York: Cambridge University Press
Friedman, S. L. & Helm, D. (2010). End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities
Wagemans, A,van Schrojenstein Lantman-de-Valk, H, Tuffrey-Wijne, I, Widdershoven, G & Curfs, L (2010). End-of-Life Decisions: An Important Theme in the Care for People with Intellectual Disabilities. Journal of Intellectual Disability Research (54):
Acknowledgments
The authors would like to thank the UCEDD and LEND programs who took the time to respond to this survey, especially those who provide this vital service.