Deinstitutionalisation and changes in life circumstances of adults with intellectual disability in Queensland

Young, Janet Louise (2001). Deinstitutionalisation and changes in life circumstances of adults with intellectual disability in Queensland PhD Thesis, School of Education, The University of Queensland.

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Author Young, Janet Louise
Thesis Title Deinstitutionalisation and changes in life circumstances of adults with intellectual disability in Queensland
School, Centre or Institute School of Education
Institution The University of Queensland
Publication date 2001-12-21
Thesis type PhD Thesis
Supervisor Prof Adrain Ashman
Total pages 224
Collection year 2001
Language eng
Subjects 321204 Mental Health
920209 Mental Health Services
389999 Other Behavioural and Cognitive Sciences
750305 Ability and disability
L
Formatted abstract Over the past decade the process of moving persons with intellectual disability from large state institutions into smaller community based group homes has become an accepted practice in most Western countries. The relocation process is known as deinstitutionalisation and is based on theories of normalisation and Social Role Valorisation (Nirje, 1985; Wolfensberger, 1972).

The thesis presents a report of Australia's largest deinstitutionalisation research project where residents from a government run institution -- Challinor -- in Ipswich, Queensland, were relocated after a government decision was made to close the centre. Institution residents at this time were mainly older (aged over 40 years), many had severe and profound levels of intellectual disability, behaviour problems, and most had been institutionalised for over 20 years. This population of aging long-term institutionalised adults with severe levels of intellectual disability are considered the most problematic to relocate into community settings.

Most of the Challinor residents were relocated into community group homes under the auspices of normalisation (Nirje, 1985) and person centred planning (Mount, 1987). The principle of normalisation advocates the treatment and care of people with intellectual disability in the same way as citizens in our society without intellectual disability. Institutions or large scale residential and congregate services are deemed to be inappropriate as it is not necessary to isolate these people away from mainstream society. By adopting the principle of normalisation, people with intellectual disability are given more socially valued roles and equivalent treatment with the ultimate aim of providing a better quality of life.

The quasi-experimental design involved longitudinal assessment and repeated measures using standardised tests, rating scales and collection of objective information completed prior to the relocation and after 1-, 6-, 12-, 18-, and 24-months of community living. The research aimed to document changes in adaptive and maladaptive behaviour, choice-making, and objective quality of life which could be attributed to the nature of the residential service provided. The assessments used were the Adaptive Behavior Scale (Nihira, Leland, & Lambert, 1993), the Resident Choice Assessment Scale (Kearney, Durand, & Mindell, 1995), and the Life Circumstances Questionnaire (Young, Sigafoos, Ashman, & Suttie, 1996).

Data were analysed for changes in adaptive and maladaptive behaviour, choice-making, and objective quality of life, and for differences in age (20-39 years, 40-59 years, and 60+ years) and level of intellectual disability (mild/moderate and severe/profound) for the population of 104 residents. Results for the total group indicate increases in adaptive behaviour, stable levels of maladaptive behaviour, increased choice-making, and improved objective quality of life when participants were living in community houses compared with their baseline score at Challinor.

Changes in adaptive behaviour over time by age and level of intellectual disability show improvements for all adults with severe levels of intellectual disability and older adults with mild/moderate intellectual disability. Older adults and those with severe and profound intellectual disability benefited from the relocation. There was variation in choice-making as adults with mild/moderate intellectual disability had higher scores while the youngest age group with severe/profound intellectual disability were making less than half of everyday choices after 24 months of community living. All ages and levels of intellectual disability increased in objective quality of life. Trend analysis showed that, after 24 months, many results were beginning to plateau suggesting that the momentum of the early days is not being maintained—an issue that needs to be addressed in the future by service providers.

A sample (n = 31) of those already relocated into the community was matched with someone still living at Challinor to provide a direct institution versus community comparison. Community life again had superior outcomes in all areas assessed except for maladaptive behaviour which remained unchanged. A series of case studies provided further quantitative and qualitative evidence and these results illustrate variation in individual outcomes for adaptive behaviour, maladaptive behaviour, choice-making, and objective life quality.

Results for the total community group, matched group, and case studies provided evidence for more favourable outcomes for adults with intellectual disability living under a residential service model in the community compared with living at Challinor. The plateauing of results and variation in individual outcomes, especially after two years of community living, suggested that relocation alone may be insufficient to maintain adaptive behaviour, choice-making, and objective life quality. Attention needs to be given to developing the skills of staff to capitalise on gains which have been achieved. Staff should be educated in specific pedagogical procedures such as active support (Jones et al., 1999) and the teaching strategies of Special Education to maintain the initial momentum after relocation. Deinstitutionalisation is a first step in re-evaluating residential service provision and the role of direct care staff to adults with intellectual disability in Queensland.
Keyword People with mental disabilities -- Deinstitutionalization -- Queensland
People with mental disabilities -- Housing -- Queensland
Community mental health services -- Queensland
Deinstitutionalization -- Queensland
Additional Notes The author has given permission for this thesis to be made open access.

 
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