Quality of Life for Adults
with Intellectual Disability &
Complex Need: Lessons from
an Irish Perspective.
Dr. Barry Coughlan,
Assistant Director,
Doctoral Programme in Clinical Psychology,
Faculty of Education & Health Sciences,
University of Limerick, IRELAND.
Bucharest, March 16th 2012.
Context & Background
“Policy of deinstitutionalisation was based
on the proposition that Quality of life
(QoL) of individuals with intellectual
disabilities (ID) will improve as a result of
being moved from institutions to
community-based care settings”
(Chowdhury & Benson,2011)
Deinstitutionalisation (DI)
► Largely
based on the principles of normalisation
(Wolfensberger, 1980; Nirje, 1985).
► Community-based
care “implied”:
 Freedom to access activities, services, events
offered by the community.
 A degree of control over one’s environment.
 An improved quality of life (QoL).
International Perspectives on
Deinstitutionalisation
► Much
international research on this topic, and across
studies and countries, outcomes of
deinstitutionalisation have generally been positive.
•
Empirical evidence has shown dramatic improvements
in QoL for service users in terms of:
–
–
–
–
Emotional wellbeing
Physical health
Reductions in challenging behaviour
Better engagement within their local communities
Irish Perspectives …
► Process
of DI, driven by countries such as USA,
Canada, UK & Sweden.
► Much
movement of service users within Irish
Services over the past 10-15 years.
► Overall
little research to actually show the
impact of community living, and the processes
associated with DI.
The “Castletroy” Project.
►
Aim: To move 20 service users (adults with ID) from a large
scale residential facility to community living.
►
All had complex need.
►
Track progress over time.
►
Ascertain whether community living does make a difference in
their lives.
►
Document & track the process of DI (SU; Family; Staff)
The Present Study.
► Aim:
 to undertake a comprehensive quality of life study,
which will encompass both objective & subjective
measures of QOL.
 From the perspective of:
 Service users.
 Family members
 Direct care staff
The Present Study.
► Methodology:
 Mixed-methods approach, utilizing both qualitative and
quantitative methodologies.
► Three-tiered
approach to be used - service user, staff
& family members.
► Data
to be gathered on a range of topics, from choice,
engagement in activities, access to community
facilities etc
The Present Study.
► Participants:
 20 male service users who moved from a large
“residential facility” to a smaller “group home”.
► Measures:




ABS-RC:2 (Adaptive Behaviour scale)
ABC (Aberrant Behaviour Checklist)
QOL-Q (Quality of Life Questionnaire)
Range of interview protocols devised.
The Present Study.
► Interview
Protocol:
 10 family members were interviewed.
 11 staff members interviewed.
 3 service users were also interviewed.
► Psychometric
Measures:
 Pre/post & 6+12 month follow-up assessment.
 + ongoing evaluations of QoL.
Overview of Findings
Implications for Practice
Overview of Findings.
► Significant
volume of data obtained from the
different strands:
 Service users.
 Family members
 Direct care staff
Overview of Findings.
Individual:
►
Emotional wellbeing: 
►
Challenging Behaviour: 
►
Adaptive Behaviour: 
►
Community Activity: 
►
Quality of Life: 
Family:
►
Fearful & anxious re change.
►
Lack of appropriate
consultation & discussion re
process (communication?).
►
Family Coping?
A different life …
(Main Theme)
“Nothing could make it any better”.
Overview of Findings.
Staff Perspectives:
► Progress
of Service Users.
► Suitability
of accommodation.
► Communication
& Support from Management.
 Fear of change.
 Transition process…
Key Messages.
of assessing subjective & objective
components of QoL.
► Importance
► The
voice & perspective of the individual
accessing the service is central.
► Three-tiered
useful.
approach to study, proved very
Key Learning Outcomes.
► Importance
of:
►Clear
communication.
►Collaboration & partnership with all parties.
►Problem solving.
► Change
& transition happens slowly…
► Importance
of up-skilling and Continued
Professional Development (CPD).
“Successful”
Deinstitutionalisation
•
One of the key elements:
– Supporting users of the service & their families.
BUT
– Also supporting frontline staff in the process
•
Importance of Continued Professional
Development (CPD)
– Frontline staff engaged in a range of knowledge
exchange activities (up-skilling).
– Supervision; peer reflection & practice
► “The impact of organisational arrangements and
working practices can have a major impact on staff
stress, work satisfaction, staff turnover and most
importantly directly and indirectly on the people with a
learning disability…”.(McConkey et al, 2004, p.18).
► “Physically
residing in a community is not enough for
most people, it seems that they need to be part of the
community in a mutually contributive, reciprocal,
integrated fashion.” (O’Brien, 1984, cited in Bramston
et al, 2002, p.2).
“In” the Community
does not mean “of”
the community.
Chowdhury & Benson, 2011, p.262
Future Directions…
► Importance
of services being guided by Person
Centred Planning.
► QoL
is a changing construct BUT is a Key
Change Agent.
►Assists
► Quality
us in considering organisational change.
improvement is a continuous process.
The process of community integration
forces service providers, and also ourselves
as human beings to explore how we define
the good life for ourselves, and whether we
create a meaningful space for people with
intellectual disabilities in that life.
(Reinders, 2002).