Supported decision making: Are everyone's voices being heard?

1. Paper presented at: Supported decision making: from theory to practice A conference auspiced by the Victorian Office of the Public Advocate Jo Watson Scope, Victoria, Australia Deakin University, Victoria, Australia Supported decision making: Are everyone's voices being heard? Contributions: Nick Hagiliassis Erin Wilson Michael Bink Rhonda Joseph Photo: Scope

2. United Nations convention on the Rights of Persons with Disabilities (UNCRPD) The first principle of the UNCRPD is: ‘respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’ (United Nations., 2006) Watson 2013

3. Supported Decision Making: Basic principles • Everyone can participate in decisions with support; • Everyone has responses to things they experience. These responses are often interpreted as preferences by people who know someone well. These preferences can be used as the building blocks of decisions; • There is significant value in human beings supporting, and working collaboratively with one another to make decisions; • Everyone uses their support networks in making decisions that are difficult for them. Watson 2013

4. Supported Decision Making: It’s not about individual capacity ‘The starting point is not a test of capacity, but the presumption that every human being is communicating all the time and that this communication will include preferences. Preferences can be built up into expressions of choice and these into formal decisions. From this perspective, where someone lands on a continuum of capacity is not half as important as the amount and type of support they get to build preferences into choices’ (Beamer & Brookes, 2001 p.4) Watson 2011

5. So why isn’t everyone invited to the party? Photo: Melba disability support services Watson 2013

6. ‘Ok, so you're saying he can make a decision? I get it, I get what you’re saying, but I'm, I'm not sure you know him, do you? He can't tell us what he wants. We just decide shit for him. You know, no offence but we have all these programs and stuff, but at the end of the day, people don't know who we're dealing with here. They just can't communicate. It's different for them, they can't tell us what they want, so we just have to get on with it and make decisions that we think are best for the guys’. Photo: Taken by researcher Watson 2013

7. Perception of capacity matters Watson 2013

8. Our research Preliminary finding: Those who have a positive view of a person’s capacity to participate in decisions are likely to be more responsive to the focus person. Watson 2013

9. ‘Well, he is telling us things all the time you know. You know, what he wants to eat or doesn’t want to eat, he certainly contributes to decisions made about him, just needs a shit load of help from us’. Photo: Melba disability support services Watson 2013

10. Researcher: ‘So what was Yuri’s decision there do think?’ Supporter: ‘I guess he told me if he had had enough sandwich by jamming his mouth shut like he does, there it is just like that. But that’s not really what you mean. A decision? I don’t think so. Really?’ Watson 2013

11. Factors that appear to impact on supporters’ perception of focus people’s capacity to participate in decisions • Understanding the human communication continuum; • Interpreting collaboratively as opposed to individually: • Viewing focus person ‘beyond their disability’; • The kind of decision being made; • The nature of the relationship (paid/unpaid/both) Watson 2013

12. Understanding communication continuum: Its impact on perception of focus person’s capacity to participate in decision making? Where supporters’ have a demonstrated understanding of the communication continuum, it is appears likely they will perceive the person as having capacity to participate in decisions Watson 2013

13. Relationship between understanding of communication continuum and perception of decision-making capacity Watson 2013

14. Individual verses collaborative interpretation Another ride? Watson 2013 Video: Melba Support Services

15. Watson 2013

16. The nature of relationships ‘Caring for’ and ‘caring about’ (Dalley, 1996) Watson 2013

17. Despite the importance of unpaid relationships, some have very few ‘He is just not as lucky as some others guys in the house. The only people who really give a shit about him are us support workers. Imagine a life like that.’ Support worker Photo: Melba Support Services

18. Why are building these networks so challenging? People with severe/profound intellectual disability can be viewed as unattractive and unresponsive: 'I know this sounds awful, but I kind of was shocked when I met them. Is it awful that I dry retched? Gary had a smell, oh I'm sorry I sound awful. They weren't like Dave when I first met him. He made me laugh. He looked me in the eye and made me laugh. With Neil and Gary, I kind of get the feeling that they don't want me in their life. They give me very little back, you know what I mean’ Volunteer Watson 2013

19. ‘His challenging behaviours don’t help’ ‘His challenging behaviour don't help, behaviours of concern, whatever we are calling it these days. The spitting, it’s so not attractive. It’s ok for us because we’re used to it, but all that spitting and then playing in it. We were in Spotlight the other day, people were staring and moving away, it’s just disgusting and I tell him that! I make him clean it up. Who's going to want to be his friend’ Support worker Watson 2013

20. Paid and unpaid roles: Is it ok to blur the boundaries? Watson 2013

21. Supporters’ perception of focus person’s capacity to participate in decisions (questionnaire about choice) Rating 1 - 3 Watson 2013

22. Professional boundaries: Realistic? Helpful? ‘I’ve told her that she shouldn’t be dropping in there for a cuppa. She knows too much about Derek and his family. It’s ok that she shares superficial things with them, you know tell them about what movies she has seen and what she got up to on the weekend, stuff like that. But that should be it. She’s way to open with them. I think she wants to be their friend’ Day service manager ‘I don't know. We get all these mixed messages. You can't step over the line in terms of professional and personal stuff. I don't get it, its impossible. I'm meant to care, but I'm not meant to care’ Supporter worker Watson 2013

23. Acknowledgments We acknowledge the many people and their supporters who have helped and are helping with this research. This work is especially dedicated to Neil (1968-2011) who, along with his family taught us so much more than any seminar, workshop or text ever could about living with a profound intellectual disability. Watson 2013 Photo: Scope