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
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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
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
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 La 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 La 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 La Trobe University/Tizard Kent
Rarely seen in place that foster convivial
encounters P
erce
nta
ge
100
80
60
40
20
0
Rarely/never Sometimes Very often/often
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
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
Its complex – processes of adjustment to be inclusive – require skilled negotiation
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
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
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
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
Available at http://supportinginclusion.weebly.com (password encounter