We are Worth the Investment. NSW Council for Intellectual Disability Conference 16-17 July 2015. More than just getting there- insights into enabling social inclusion of people with intellectual disability. Christine Bigby, Director, Living with Disability Research Centre, La Trobe Unvicersity

1. latrobe.edu.au CRICOS Provider 00115M
More than just getting there – insights into enabling
social inclusion of people with intellectual disability.
NCID conference July 2015
Professor Christine Bigby
Director Living with Disability Research Centre
La Trobe University
And colleagues, Ilan Wiesel, Diane Craig, Sian Anderson, Emma
Bould, Roger Stancliffe, Juilie Beadle Brown, Nathan Wilson

2. Outline
‘’not as connected as they want to be’
‘I could do with a hand with that’
Aim to synthesise findings from series of studies over past 5 years which have
examined what supports social inclusion.
• Encounter study
• Transition to Retirement and inclusion in community groups
• Supported Living study
• Neighbourhood Connections
• Conceptualise social inclusion
• Review situation of continuing social exclusion
• Why do support services struggle to enable social inclusion
• What works – elements of a multi factorial approach
• Implications for NDIS, planning, design and funding of support

3. Need for change in community members, social groups, broader
expectations and social attitudes too
… The success or failure of deinstitutionalisation will rest with our
ability, collectively, to prepare our communities to accept persons
with intellectual disabilities as valued and contributing members
of our society. (Gallant, 1994, cited Bigby & Fyffe, 2006)
Rights to formal roles do not always equate to relationships
…When community is an experience rather than a location, a
space or a legal structure, then inclusion cannot be only a matter
of creating space by changing institutional roles. It must also, and
even primarily, be a matter of sharing one’s life with other people.
(Reinders, 2002, p 2)
Neither being present nor having rights were ever
going to be enough – this isn’t new – but it is more
specific to people with intellectual disability

4. 4La Trobe University/Tizard Kent
Image area
Gaining conceptual clarity to inform the task of
enabling social inclusion
Ill defined concept
Social interaction and relationships
Broad spectrum –
• Being recognised as a legitimate
community member - acknowledged
• Encounters with strangers
• Becoming known as an individual by
others
• Forging acquaintances
• Actively participating with shared
purpose with other community members
• Forming friendships
• Not necessarily a linear process but one
might lead to another at times

5. 5La Trobe University/Tizard Kent
Despite visionary policies since 1986 - continuing
failure to support social inclusion - recent findings
Continue to occupy a distinct social space (family, paid staff and others with
intellectual disability) – for some these latter relationships are very important
– not so much for people with more severe and profound intellectual
disability)
On-going social exclusion of people with intellectual disabilities from the life of
the wider community
Not known by others in the community
• More than half of community members (55%) did not know anyone with intellectual
disability by name
• More than half (65%) had not had a conversation with a person with intellectual
disability in last month
• More likely to know someone if younger, have family member, live in rural town or low
socio economic locale
• People with intellectual disability most likely to be seen in shopping centres, shops and
streets ( see graph) less likely to offer chances for convivial encounter, shared activities,
social interaction)
• Not being seen in community groups and public places that foster shared activities and
interaction

6. 6La Trobe University/Tizard Kent
Rarely seen in place that foster convivial
encountersPercentage
100
80
60
40
20
0
Rarely/never
Sometimes
Very often/often

7. A little more success in new forms of accommodation support
Greater independence but loneliness and absence of close friends are still major
issues.
Matched group from supported living and group homes
The only significant difference was on access to social club, in the direction of those
in supported living having more access than those in the group homes.
N/n
Supported Living Group Home p
29 29
Score on the Index of Participation in Daily Life
M 74.27% 65.5% p=0.285
Range 11.5-100 19.2-100
Score on the Index of Community involvement
M 53.68 56.60 p=0.662
Range 18.8-93.8 31.3-100.0
Score on the Choice Making Scale
M 76.22 69.17 p =0.981
Range 44-100 2.78-100
Contact with friends ( with or without intellectual
disability- often also counted paid staff)
76% 83% p=0.504
Any type of work (paid or unpaid) 48.3% 52.6% p=0.768
Attended some form of day programme 41.4% 47.4% p=0.683
Accesses a social club 44.8% 5.4%
χ2 8.7
p=0.003

8. Why has there been so little success
Supported living – focus on practical support – providers felt other aspects
devalued
Group homes - last thing on the list of things to do
But more than resource issues - Tensions for disability support staff
Beliefs and practices do not promote a focus on building inclusion beyond
presence
̶ Ambivalence about community response to intellectual disability and benefits of
individualised, community-based activity, is it feasible esp re people with more
severe disabilities
̶ Desire to protect from discrimination
̶ Default position group based activity
̶ Risk management culture
̶ Little focus on skills for supporting inclusion
Tensions for community groups and community members
̶ Participation of person with intellectual disability may threaten group status quo
̶ Genuine desire to help set against protection of group purpose or level of comfort
̶ Don’t know how to interact – how to react to unusual behaviour

9. Its complex – processes of adjustment to be inclusive – require skilled negotiation

10. Leadership response
 Differentiated or non-differentiated
Initial anxiety
 Fitting in, being manageable
 Conditions imposed
Discernment process
 Group social processes
̶ Expectations (beliefs about right place, wrong place)
̶ Taking responsibility (shared across group or designated)
̶ Accurate feedback (to adjust to group norms)
̶ Familiarity (prior contact-level of comfort and modelling for others)
̶ Kindness (presence of genuine warmth and positive regard)
 Skills and characteristics of central participant
̶ Use of initiative, be willing to try, people skills.
 Access to expertise
 Presence of integrating activity
Processes of adjustment

11. Community kitchen as exception
 Difference dilemma
 Access to expertise
 Presence of integrating activity
Features of active participation – sharing common purpose
 Equal membership status
 Mutually rewarding for participants with and without intellectual
disability
 Working cooperatively toward a common goal
 Effective use of expertise to develop capacity
Continuum of participation
Adjustment necessary even in the most inclusive
places

12. For example supporting inclusion in a community group -
Knowing the person and their interests – no small task
Locating and undertaking an analysis of groups and their culture
̶ Presence of right conditions for meaningful contact and shard purpose
(frequency, sustained over time, structured activity that fosters shared
purpose and cooperation)
̶ Is there authority support
̶ Is there presence of integrating activity
̶ Willingness to make effective use of skilled support
Early negotiation – ongoing or episodic support
̶ skilled support to facilitate inclusion (shaping expectations, ensuring
accurate feedback, transferring responsibility, utilising and building on
familiarity and kindness)
Adequate preparation of people with intellectual disability
Coordination with other supporters involved in person’s life
Complex work requires focus and skill

13. Micro practice supporting or obstructing
encounters
Importance of place - staff forward thinking about making social
connections and selecting places
Not only planning to go places but types of places – who goes and how
support is provided
Critical judgements need to make – when and how to facilitate or initiate
encounters or intervene
Ways to avoiding obstructing opportunities – conveying negative
messages
Modelling and coaching skills for community members (active mentoring)
Intro to clips (overpage)
• Supermarket example skilled prompting to initiate encounters
• Street and group support workers obstructing encounters
• Hairdresser clip getting in the way and poor modelling to others
• Rolling sleeves subtle support to strangers to ease encounters

14. Available at http://supportinginclusion.weebly.com (password encounter

15. Multifaceted elements of supporting inclusion – part
of overarching framework of enabling practice
Involves creating the right conditions and providing skilled individual support
This means working at multiple levels – not just direct support hours
Recognising the practices that are fundamental to achieving social inclusion is a
key challenge for NDIS
This is part of the bigger puzzle about recognising the complexity of supporting
inclusion, engagement and decision making for people with intellectual
disabilities
It is not one discrete set of skills but a closely related set – which are not well
articulated
• All practice requires knowing the person well
• Much has its foundations in Active Support - an enabling relationship
• But community inclusion work but requires additional skills, about
understanding communities and groups - consistent and focussed
attention
• Support for decision making probably requires deeper knowledge and
commitment to the person

16. Evidence indicates practice – and thus planning, design and
support should encompass
• Direct hours - skilled direct support across settings based on Active
Support
• Indirect hours - preplanning re place and laying the groundwork in
community groups or community leaders – mapping and analysis of
groups or places
• Indirect hours - negotiating, resourcing, supporting others in groups or
community
• Episodic and flexible capacity of varying intensity when necessary
• Practice Leadership retain to focus - model, coach, supervise, team
work , organise and shift planning to optimise available support
• Other organisational factors –recognition of practice as the ‘product’
and commitment from senior management – aligned organisational
practices

17. Resources and References
Supporting Inclusion – Online training program (Bigby & Wiesel, 2015)
http://supportinginclusion.weebly.com (password encounter)
(password: encounter).
Transition to Retirement – Guide to inclusive practice
Stancliffe, Wilson, Gambin, Bigby, Balandin (2013).
manual and DVD is available
online at http://purl.library.usyd.edu.au/sup/9781743323274

18. Introduction to Active Support
On line training materials for active support
Greystanes Disability Services and La Trobe University, Living with Disability Research Centre
http://www.activesupportresource.net.au

19. References
Bigby, C.,& Wiesel, I. (2011). Encounter as a dimension of social inclusion for people
with intellectual disability: beyond and between community presence and
participation. Journal of Intellectual and Developmental Disability, 36(4), 263-267.
Wiesel, I.,& Bigby, C. (2014). Being recognised and becoming known: encounters
between people with and without intellectual disability in the public realm. Environment
and Planning A, 46(7), 1754-1769.
Wiesel, I., Bigby, C., & Carling-Jenkins, R. (2013). ‘Do You Think I’m Stupid?’: Urban
Encounters between People with and without Intellectual Disability. Urban
Studies, 50(12), 2391-2406.
Bigby, C., & Wiesel, I. (2015). Mediating community participation: Practice of support
workers in initiating, facilitating or disrupting encounters between people with and without
intellectual disability. Journal of Applied Research in Intellectual Disability 28, 307–318
Craig, D., & Bigby, C. (2015). “She’s been involved in everything as far as I can see”:
Supporting the active participation of people with intellectual disabilities in community
groups. Journal of Intellectual and Developmental Disability. 40, 12-25

20. Bigby, C., Wilson, N., Stancliffe, R., Balandin, S., Craig, D, Gambin, N. (2014). An Effective
Program Design to Support Older Workers with Intellectual Disability Participate
Individually in Community Groups. Journal of Policy and Practice in Intellectual Disability.
11, 117-127
Stancliffe, R., Bigby, C., Balandin, S., Wilson, N., Craig, D. (2014). Transition to retirement
and participation in inclusive community groups using active mentoring: An outcomes
evaluation with a matched comparison group. Journal of Intellectual Disability Research
59(8), 703-718. doi: 10.1111/jir.12174
Stancliffe, R., Wilson, N., Gambin, N., Bigby, C., Balandin, S (2013). Transition to
retirement: A guide to inclusive practice. Sydney: Sydney University Press.
Mansell, J., & Beadle Brown, J. (2012) Active support – Jessica Kingsley
Bigby, C., Anderson, S., & Bould, E. (2015). “I might need a hand with that” - Enabling
mutual support & social connections for people with intellectual disabilities. Living with
Disability Research Centre, La Trobe University. http://hdl.handle.net/1959.9/319804
Bigby, C., Bould, E., & Beadle-Brown, J. (2015). ‘Not as connected with people as they want
to be’: Optimising outcomes for people with intellectual disability in supported living
arrangements. Living with Disability Research Centre, La Trobe University
http://hdl.handle.net/1959.9/316724

21. Thank you
latrobe.edu.au CRICOS Provider 00115M
Contact Living with Disability Resource Centre, La Trobe University
C.Bigby@latrobe.edu.au
http://www.latrobe.edu.au/school-allied-health/research/living-with-a-disability
http://www.latrobe.edu.au/health/about/staff/profile?uname=CBigby