Bucharest, March 16th 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.

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) (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: 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 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. ► Importance of assessing subjective & objective components of QoL. ► The voice & perspective of the individual accessing the service is central. ► Three-tiered approach to study, proved very useful.

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: 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) 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 us in considering organisational change. ► Quality 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).