UNCRPD Article 12: Can it be upheld for people who communicate informally? The role of supported decision making in the lives of people with severe to profound intellectual disability Paper presented at: The 16th Biennial Conference of ISAAC, Lisbon, Portugal Discover Communication! Presented by Jo Watson Scope, Victoria, Australia Deakin University, Victoria, Australia [email protected]Twitter: @Jowat Watson, Hagiliassis, Wilson (2014) Photo: Scope
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UNCRPD Article 12: Can it be upheld for people who communicate informally?
The role of supported decision making in the lives of people with severe to profound intellectual disability
Paper presented at: The 16th Biennial Conference of ISAAC, Lisbon, Portugal Discover Communication! Presented by Jo Watson Scope, Victoria, Australia Deakin University, Victoria, Australia [email protected] Twitter: @Jowat
Watson, Hagiliassis, Wilson (2014) Photo: Scope
United Nations convention on the Rights of Persons with Disabilities (UNCRPD)
Watson, Hagiliassis, Wilson (2014)
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)
Article 12 (UNCRPD, 2006)
‘Persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’
Signatory nations:
‘shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’
Watson, Hagiliassis, Wilson (2014)
We live in a time and place where: “freedom and
autonomy are valued above all else”
Schwartz 2000
Watson, Hagiliassis, Wilson (2014)
So why isn’t everyone invited to the party?
Watson, Hagiliassis, Wilson (2014)
1. Definitions of personhood
“Current conceptualisations of personhood in relation to human rights exclude people with
intellectual disability”
(Fyson and Comby, 2013)
Watson, Hagiliassis, Wilson (2014)
2. Communication
Watson 2013
Unintentional Communication
Intentional informal/non-
symbolic communication
Symbolic communication
3. Understandings of decision making capacity
Watson, Hagiliassis, Wilson (2014)
Self-determination and communication literature
highlights that:
“Despite changing perceptions, a lack of acceptance that people with severe to profound
intellectual disabilities can communicate and therefore participate in decisions still exists”
(Watson, N.D.)
7
“When self-determination is interpreted strictly to mean “doing it yourself”, there is
an obvious problem for people with significant
disabilities, many of whom may have limits to the number and types of
activities they can perform independently”
(Wehmeyer, 1998 p.65)
Watson, Hagiliassis, Wilson (2014)
Re-conceptualizing decision making 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, Hagiliassis, Wilson (2014)
Research aim
To examine the processes,
characterizations, enablers and barriers relating to decision-
making participation and support for people with
severe to profound intellectual disabilities in
order to understand how this participation can be
fostered (Watson, n.d.)
Watson, Hagiliassis, Wilson (2014)
Watson, Hagiliassis, Wilson (2014)
Perception of decision making capacity matters
Watson, Hagiliassis, Wilson (2014)
(Carney, 1997; Quinn, 2010)
On 1-5 scale, how much do you agree with statement: ’X is able to participate in decisions about his/her life’?
Watson, Hagiliassis, Wilson (2014)
0
1
2
3
4
5
A1 A2 N1 N2 Na1 Na2 Y1 Y2 K1 K2
Ra#n
g on
scale 1-‐5
Focus people
Pre-‐interven>on
Post-‐interven>on
‘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’
Watson, Hagiliassis, Wilson (2014)
Paid supporter
Factors impacting on supporters’ perception of focus people’s capacity to participate in decisions
1. Understanding the human communication continuum;
2. Individual versus collaborative interpretation; 3. The nature of the relationship (closeness) 4. Viewing focus person ‘beyond their disability’; 5. The kind of decision being made; 6. Acknowledging interdependence;
Watson, Hagiliassis, Wilson (2014)
Relationship between understanding the communication continuum and perceptions of decision making capacity
Watson 2013
0 0.5 1
1.5 2
2.5 3
3.5 4
4.5 5
Pre interven>on Post interven>on
Understanding of communica>on con>nuum
Percep>on of decision making capacity
Individual verses collaborative interpretation
Watson, Hagiliassis, Wilson (2014)
Another ride?
Video: Melba Support Services
Pre supported decision making process
Post supported decision making process
‘These questions really are not relevant. I really struggle with the
premise of these questions. You talk about where he lives, who he lives
with, can he have a pet. When you talk about the 'real world' (uses
fingers to demonstrate quotation marks), Kevin can't decide where he lives. He can't decide whether
he has a pet. He has to slot into the house as it is’
Kevin’s support worker
‘I've worked out that what we think about capacity is really important. If we deny his capacity then what's the point of us paying attention to his preference, because when you think about it by saying he has no
capacity we are saying he doesn't have preferences’
Kevin’s support worker
Watson 2013
6 months
Relationship closeness
Watson, Hagiliassis, Wilson (2014)
Despite the value 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
Watson, Hagiliassis, Wilson (2014)
Mean scores on 'questionnaire about choice'
based on categories of closeness
Watson, Hagiliassis, Wilson (2014)
0
1
2
3
Paid su
pporters percep#
on of
decision
making capa
city
Rela#onship (level of closeness)
In>mate (n=6)
Very Close (n=9)
Close (n=5)
Not close (n=4)
Distant (n=1)
But there are challenges
‘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, Hagiliassis, Wilson (2014)
Are we ready to uphold Article 12 for all?
Yes: If decision making is characterized as interdependent rather than independent particularly for people with severe to profound ID. If the following factors are taken seriously within the context of decision making support for this population: - Understanding the communication
continuum - Individual versus collaborative interpretation
of preference; - Relationship closeness (paid and unpaid)
Watson, Hagiliassis, Wilson (2014)
Acknowledgments
Watson, Hagiliassis, Wilson (2014)
We acknowledge the many people and their supporters who have contributed to this research
and have given permission for their stories and images to be shared
within this presentation.
This work is especially dedicated to Dean (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.
Photo: Scope
References
Bach, M., & Kerzner, L. (2010). A New Paradigm for Protecting Autonomy and the Right to Legal Capacity. Ontario, Canada: Law Commission of Ontario. Beamer, S., & Brookes, M. (2001). Making decisions. Best practice and new ideas for supporting people with high support needs to make decisions. London: Values into Action. Bloomberg, K., West, D., & Iacono, T. (2003). PICTURE IT: an evaluation of a training program for carers of adults with severe and multiple disabilities. Journal of Intellectual and Developmental Disability, 28(3), 260-282. Brown, F., & Gothelf, C. (1996). Self-determination for all individuals. In D. Lehr & F. Brown (Eds.), People with disabilities who challenge the system (pp. 335-353). Baltimore: Paul H. Brookes. Byrnes , A., Conte, A., Gonnot, J., Larsson, L., Schindlmayr, T., Shepherd, N., . . . Zarraluqui, A. (2007). From exclusion to equality. Realizing the rights of persons with disabilities. Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities (Vol. 14). Geneva: United Nations. Carney, T. (1997). Competence. International Journal of Law and Psychiatry, 20(1), 1-4. Coupe, J., Barton, L., Barber, M., Collins, L., Levy, S., & Murphy, D. (1985). Affective communication assessment: Manchester education. Deci, E., & Ryan, R. (1985). Intrinsic motivation and self-determination in human behaviour. New York: Plenum. Felce, D., Lowe, K., Perry, J., Baxter, H., Jonesna, E., Hallam, A., & Beecham, J. (1998). Service support to people in Wales with severe intellectual disability and the most severe challenging behaviours: processes, outcomes and costs. Journal of Intellectual Disability Research, 42(5), 390-408. Fyson, R., & Cromby, J. (2013). Human rights and intellectual disabilities in an era of ‘choice’. Journal of Intellectual Disability Research, 57(12), 1164-1172. Heller, T., Miller, A., & Factor, A. (1999). Autonomy in Residential Facilities and Community Functioning of Adults With Mental Retardation. Mental Retardation, 37, 449-457. Hostyn, I., Petry, K., Lambrechts, G., & Maes, B. (2011). Evaluating the Quality of the Interaction Between Persons with Profound Intellectual and Multiple Disabilities and Direct Support Staff: A Preliminary Application of Three Observation Scales from Parent-Infant Research. Journal of Applied Research in Intellectual Disabilities, 24(407–420). Quinn, G. (2010). Personhood and legal capacity: Perspectives on the Paradigm Shift of Article 12 CRPD. Harvard Law School. Quinn, G. (2011). An Ideas Paper: ‘Rethinking Personhood: New Directions in Legal Capacity Law and Policy’ or ‘How to Put the ‘Shift’ Back into Paradigm Shift'. University of British Colombia, Vancouver, Canada. http://cic.arts.ubc.ca/fileadmin/ Schuengel, C., Kef, S., Damen, S., & Worm, M. (2010). 'People who need people’: attachment and professional caregiving. Journal of Intellectual Disability Research, 54(Supplement 1), 38-47. Schwartz, B. (2000). Self-determination: The tyranny of freedom. American Psychologist, 55(1), 79-88. Stalker, K., & Harris, P. (1998). The Exercise of choice by adults with intellectual disabilities: A literature review. Journal of Applied Research in Intellectual Disabilities, 11(1), 60-76. Stancliffe, R., Abery, B., & Smith, J. (2000). Personal Control and the Ecology of Community Living Settings: Beyond Living-Unit Size and Type. American Journal on Mental Retardation, 105, 431-454. United Nations Convention on the Rights of Persons with Disabilities (2006). Watson, J. (n.d). Ongoing thesis: Listening to those rarely heard: Decision-making for people with severe to profound intellectual disabilities (PhD), Deakin University. Watson, J., & Joseph, R. (2011). People with severe to profound intellectual disabilities leading lives they prefer through supported decision making: Listening to those rarely heard. A guide for supporters. A training package developed by Scope. Melbourne: Scope. Wehmeyer, M. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons With Severe Handicaps, 23(1), 5-16.