Conceptualising Person-centered Advance Care Planning for People with Intellectual Disabilities: A Multifaceted Theoretical Approach

ABSTRACT

Due to advances in care in recent decades, adults with intellectual disabilities (ID) are living longer than ever before. This requires increased attention to issues surrounding serious illness and end-of-life care. Person-centered advance care planning has been identified as an important aspect of respecting the wishes and values of individuals. Despite this, adults with ID are largely excluded from these discussions. This paper triangulates the Bioecological Theory of Human Development, Symbolic Interactionism, and the Human Rights Perspective to explore the complexity of person-centered care for older adults with ID. Specifically highlighted will be some of the ethical concerns and environmental barriers that limit the participation of adults with ID in person-centered care. The framework outlined in this paper seeks to facilitate a more comprehensive understanding among researchers, social workers, and care systems that there is nothing inherent in people with ID that precludes them from person-centered advance care planning and end-of-life care as they age and experience serious illness. Implications for social work practice will also be discussed.

KEYWORDS:

• Person-centered care
• ageing adults
• intellectual disabilities
• theoretical triangulation

Acknowledgements

The authors wish to thank Drs. Waldrop, Critelli, Somayaji, and Persons for their valuable comments on early versions of this conceptual framework. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. The authors have no conflicts of interest to declare.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Jacqueline M. McGinley, LMSW, is a PhD candidate at the University at Buffalo School of Social Work. Her research focuses on improving care for people with intellectual and developmental disabilities who are nearing life’s end and their families. She aims to understand how policy and practice inform advance care planning and decision-making for and with people who have IDD.

Vicky Knoke, MSW, is a PhD student at the University of Wisconsin-Madison. Her research focuses on understanding and improving end-of-life care for adults with intellectual and developmental disabilities. Specifically, she seeks to understand how community based participatory research can inform policies and practices in the field.