Presentation at one day Research to Practice workshop on inclusion for people with intellectual disability held at LaTrobe University in collaboration with ASID vic, 11 Nov 2013.
2.
On-going social exclusion of people with
intellectual disabilities from the life of the
wider community
Continue to occupy a distinct social space
Lack of opportunity to engage in freely
chosen relationships with people in the wider
community
3.
Participant-observation study
Supported five people with moderate level of
impairment to participate on an individual
basis in mainstream community groups
Data in the form of field notes collected 5-10
months over two years. Supplemented by
interviews and secondary documents
4. Community
Organisational
group
context
Cooking group Neighbourhood
Leadership
Central
participant
Paid co-
Helen
house
ordinator
Men’s shed
Community
Health Centre
Opportunity
Paid coordinator and
staff
Paid manager,
voluntary staff
National charity
and not-forprofit service
provider
National ‘healthy Voluntary
ageing’ interest
leadership
group
Matthew
Christian church: Paid leader
local parish
(church
initiative
minister)
Ruth
shop
Walking group
Community
kitchen
Phil
Sol
5. Hours of
observation
in group
Time period of First group
Word
observations observation
count of
field notes
in group
from
groups
Word count
of field notes
from other
sources
Helen
54
10 months
08/2010
44,346
13,011
Phil
38
6.5 months
12/2010
34,935
19,455
Matthew
30
4.5 months
04/2011
32,037
11,713
Sol
28
7 months
03/2011
43,786
4,769
Ruth
31
7 months
09/2011
23,144
41,704
other
Totals
8,173
181
178,248
75,681
6.
What influences how community group
participants respond to and support a person
with an intellectual disability to participate in
a community group?
What changes to social processes are
necessary to promote the active participation
of people with intellectual disabilities who
have a moderate level of impairment?
7.
Marketing, negotiating access and planning
Group support
◦ Identifying mentors, contextually based
interpretation of cues and behaviours, finding
activities for the central participant to do in the
group and then modelling processes of person
centred active support
Support of central participants
◦ Transport, familiar face, reading cues from groups,
helping to change behaviour
Getting out of the way
Facilitating meaningful contact
8.
(1) the opportunity to interact in ways that
could facilitate meaningful relationships
(personal, frequent, sustained over time)
(2) contact leads to equal status between
people in both groups
(3) conditions of contact foster cooperation
(4) there is authority support.
9.
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
10.
Community kitchen as exception
◦ Difference dilemma
◦ Access to expertise
◦ Presence of integrating activity
Features of active participation
◦ 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
12. Domain
Mechanism
Operation in group
context
Domain of polity/
Classification
economy
(competence level)
Domain of culture
Protectionism
Inaccuracy of feedback
Domain of social
Role differentiation
Taking responsibility
Authority support
Positive leadership
Expectations
settings
response
Domain of situated
activity
Meaningful contact
Domain of the
Empathy
person
Perspective-taking
Familiarity
Kindness
13. 1.
Dilemmas:
What do you think are some of the tensions for disability
support staff who wish to promote community inclusion?
What are some of the tensions for community groups who
are willing to mentor a person with intellectual disability?
2.
3.
Identifying and supporting a group
What would you look for in a potential group?
What do you think are the first steps to take in negotiation
and preparation of groups?
How can groups be supported to enable active participation?
What are the implications of the findings of the study for policy
and practice?
How to prepare people with intellectual disabilities for active
participation, addressing staff commitment, key structural
issues, resources etc.
14.
Tensions for disability support staff
◦ Beliefs and practices do not promote active
participation
Ambivalence about community response to intellectual
disability and benefits of individualised, communitybased activity
Desire to protect from discrimination
Resource allocation prioritises group based activity
Risk management culture
Tensions for community groups
◦ 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
15.
Approaching groups and early negotiation
◦ Conditions for meaningful contact (frequency, duration,
structured activity that fosters cooperation)
◦ Authority support
◦ Mentoring role that facilitates shared responsibility
◦ Effective use of expertise
◦ Presence of integrating activity
Group interventions
◦ Shaping expectations, accurate feedback, taking
responsibility, building on familiarity, conditions for
kindness
16.
Adequate preparation of people with
intellectual disabilities
◦ Role of person-centred active support
Commitment of disability support staff
◦ Addressing ambivalence
Attending to structure
◦ Cooperation between group homes and day centres
◦ Flexible funding options
Resource allocation for promotion of
participation
◦ Skilled facilitator and support person
