Isaac lisbon july2014

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’


We live in a time and place where: “freedom and

autonomy are valued above all else”

Schwartz 2000


So why isn’t everyone invited to the party?


1. Definitions of personhood

“Current conceptualisations of personhood in relation to human rights exclude people with

intellectual disability”

(Fyson and Comby, 2013)


2. Communication

Watson 2013

Unintentional Communication

Intentional informal/non-

symbolic communication

Symbolic communication

3. Understandings of decision making capacity


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)


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)


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.)



Perception of decision making capacity matters


(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’?


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’


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;


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


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


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


Mean scores on 'questionnaire about choice'

based on categories of closeness


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


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)


Acknowledgments


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.


Contact details

[email protected] Twitter: @Jowat www.scopevic.org.au


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Isaac lisbon july2014