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

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

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

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

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

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

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

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