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Deinstitutionalization and quality of life of individuals with intellectual disability: a review of the international literature
- Authors:
- CHOWDHURY Monali, BENSON Betsey A.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(4), December 2011, pp.256-265.
- Publisher:
- Wiley
Deinstitutionalisation of individuals with intellectual disabilities is based on the idea that quality of life (QOL) will improve after being moved from institutions to community-based care settings. This international review investigated whether this assumption has become a reality now that the policy of deinstitutionalisation has progressed in many countries. Fifteen studies were examined that assessed QOL as an outcome of community living following deinstitutionalisation. Findings suggested that relocation had a general positive impact on life quality of participants. However, many of the studies found that improvements were most prominent shortly after the move. Participants continued to have low levels of community integration, and there was evidence that healthcare needs were not adequately met in the community. The role of service providers was indicated as vital in the continued development of participants' life quality. The authors concluded that additional research is required to identify the factors that are critical in improving QOL in community-based care.
Meta-analysis of deinstitutionalisation adaptive behaviour outcomes: research and clinical implications
- Authors:
- HAMELIN Jeffrey P., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.61-72.
- Publisher:
- Taylor and Francis
In this study, a targeted meta-analysis is conducted on adaptive behaviour outcome studies examining individuals with intellectual disability. Database searches identified 351 potentially relevant articles, and 23 studies were finally selected and compared. A table summarises the characteristics and outcomes for the studies included. 16 were American in origin, 4 were Australian, 2 were Canadian, and one originated in the UK. The article presents and discusses the results of the analysis, noting that the data from the analysis clearly illustrated the general habilitative effects associated with deinstitutionalisation and community living. The authors concluded that adaptive skills and behaviours are instrumental in the successful adjustment of individuals with intellectual disability to new environments and responsibilities. They suggest that more research is needed to identify specific factors that augment habilitation for adults with intellectual disabilities living in the community.
Assessing quality of life and mortality in adults with intellectual disability and complex health problems following move from a long-stay hospital
- Authors:
- BHAUMIK Sabyasachi, TYRER Freya, GANGHADARAN Satheesh
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(3), September 2011, pp.183-190.
- Publisher:
- Wiley
In England, residents of long-stay hospitals for adults with an intellectual disability (ID) now live in the community. The success of this can be assessed based on factors such as quality of life and mortality. This study measured quality of life at 6 months prior to moving, and at 6 months and 1 year after relocation in 51 adults with ID with complex health problems who had moved from a long-stay hospital into various community supported living accommodations. Mortality and causes of death were investigated in those who died within 2 years of relocation. Findings revealed that quality of life improved between baseline and 6 months follow-up but levelled off at 1 year follow-up. Three adults died during the first 2 years of moving to the community; all had complex problems. The authors concluded the need for careful and considered planning when relocating people with ID who had complex health problems, irrespective of their current residence.
Developments in deinstitutionalization and community living in the Czech Republic
- Authors:
- ŠIŠKA Jan, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(2), June 2011, pp.125-133.
- Publisher:
- Wiley
This article considers the progress towards the development of community-based services and full social inclusion for people with intellectual disabilities in the Czech Republic. It summarises progress over the past 2 decades in the Czech Republic in moving from an institutional era toward one that values community-based alternatives. Particular attention is paid to issues such as choice and control, individual funding as a means towards social inclusion, and the matter of human rights. While European and national policy is supportive of community living, and new individualised funding streams have been created, progress in the Czech Republic toward the goal of community living for everyone with a disability has been slow and has met with many barriers. The article highlights the need to consider issues such as the availability of data related to funding and delivery of services, planning of the transitional period toward community-based services, accessibility of reports on quality of services (including institutions), and the conflict of interests created by the system of guardianship. It concludes that, despite economic circumstances that may slow down the process of deinstitutionalisation, the direction of change toward community living needs to be sustained.
From institutionalisation to freedom...my story
- Authors:
- WARNER Karen, GAUTERIN Peter
- Journal article citation:
- Llais, 100, Autumn 2011, pp.8-10.
- Publisher:
- Learning Disability Wales
This article examines the story of Peter Gauterin, a 56 year old from Wrexham suffering from mental health problems, who was institutionalised at the age of four, often moved around, before he eventually moved into community living. The article discusses how he suffered bullying and physical abuse by staff, before eventually being left his mother’s house which enabled him to move back into the community. It outlines the help and provisions made to him be social services, the daily care activities he receives, and other forms of support that enable him to live independently.
Social integration of people with intellectual disability: insights from a social psychological research programme
- Authors:
- DIJKER A., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(9), September 2011, pp.885-894.
- Publisher:
- Wiley
People with intellectual disability (ID) are being relocated from institutional care to neighbourhood housing. The authors suggest this is being done without detailed knowledge of the social psychological aspects of everyday interaction between neighbours with and without ID. They begin by examining the different ways in which societies respond to conditions and behaviours that may be seen as deviant. They go on to use the results of their own research in the Netherlands to answer questions about what makes neighbouring with people with ID special, in terms of perceptions, emotions and interactions during a pre-contact and contact phase. The theoretical analysis suggests neighbouring in modern Western society often takes the form of benevolent tolerance, rather than stigmatisation and prejudice. However, the empirical studies reveal that in the pre-contact phase prospective neighbours without ID experience a specific pattern of emotions (e.g. with respect to information supply or a caring relationship). These anticipatory reactions were dependent on the expected size of the group and on the severity of ID. It is concluded that interpersonal relationships between neighbours with and without ID should not be polarised as prejudiced/stigmatising versus entirely accepting. The picture appears to be more complex and ambivalent and this needs to be taken into account to make social integration a success.
Back in the community
- Author:
- MURISON Sanchi
- Journal article citation:
- Learning Disability Today, October 2011, pp.34-35.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This article describes the journey from chemical and physical restraint to community living for Jason, a 29 year old man with a diagnosis of autism spectrum disorder and moderate learning disability. In 2009, Jason was sectioned and remained in an assessment and treatment centre where he was managed using physical restraint and frequent sedative medication with serious side-effects. This changed in 2010 when Jason moved into a flat in Wolverhampton supported by not-for-profit autism and learning disability support provider Dimensions. The flat is in a purpose-built block for people with autism specifically engineered to create a low arousal environment to meet their sensory needs and to encourage independent living. The Dimensions behaviour support team comprises behaviour analysts whose role is to help individuals with autism to achieve their goals. The article describes the improvements to Jason’s quality of life and his increased involvement in the community using this care approach.
Together as one
- Author:
- BUKOWSKI Matt
- Journal article citation:
- Learning Disability Today, October 2011, pp.36-37.
- Publisher:
- Pavilion
- Place of publication:
- Hove
North East Lincolnshire Care Trust Plus is undertaking a project to reshape the local market for services for people with learning disabilities. The project brings together commissioners and providers in a new way to provide better, more person-centred outcomes for service users. The principle objective is to create new opportunities for people to be supported to lead their own lives in their own homes as an alternative to institutional care. Commissioners are focusing on 2 groups, those already in care homes and young people in transition who would go into care homes if there was no other option. The project has established a collaborative partnership with 5 providers. Progress and Inclusion were appointed as the project’s housing providers, and Care UK, Creative Support, and Lifeways were appointed as the support service providers. The trust will collect information and evidence through a new outcome-based commissioning process to ensure that all the providers are delivering better outcomes at lower cost. The first tangible outcome of these strategic collaborations is that this year, for the first time, no transition pathways have led to residential care.
Avoiding institutional outcomes for older adults living with disability: the use of community-based aged care supports
- Authors:
- ELLISON Caroline, WHITE Amy, CHAPMAN Libby
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(3), September 2011, pp.175-183.
- Publisher:
- Taylor and Francis
Most people, regardless of ability or impairment, want to remain independent and living in their own home as they age. This study aimed to establish if accessing community-based aged care supports was perceived as assisting individuals ageing with a disability to remain living in their own homes and to avoid more institutional models of service. Sixty individuals aged 50 years and over with an intellectual, physical or neurological disability were interviewed to determine their perceptions in relation to ageing and the supports needed to remain living in the community. In addition, 26 staff and 6 family members were interviewed. The findings indicated that the participants receiving community-based aged care supports reported benefits including opportunities to develop relationships, maintain daily living skills, and participate in community activities. However, due to a lack of confidence in the availability of access to mainstream community-based aged care services, many participants felt vulnerable or unsure about their future and ability to remain living in their own home. Several participants commented that this meant that an undesired early relocation into residential aged care or congregate disability services appeared inevitable.
Descriptive analysis of physical restraint (protective holding) among community living adults with intellectual disability
- Authors:
- LUISELLI James K., SPERRY James M., MAGEE Christine
- Journal article citation:
- Journal of Intellectual Disabilities, 15(2), June 2011, pp.93-99.
- Publisher:
- Sage
- Place of publication:
- London
Physical restraint (PR) is sometimes used as a measure of last resort for adults with intellectual disabilities. This study investigated the incidence and implementation patterns of PR among 448 adults, aged 22 to 65, with intellectual disability within two community-based day habilitation programmes and group homes, located in a north-eastern region of the United States. Findings revealed that PR was used exclusively as a result of self-harming, aggressive, and environmentally disruptive behaviours. Less than 10% of adults received PR and more than 90% of documented restraints occurred as a planned intervention procedure. The majority of PR was used on just a few of the adults. The results showed that PR was not used excessively. The research should encourage human service organisations to design system-level processes for analysing PR incidence and implementation, thereby reducing and potentially eliminating PR among adult populations with intellectual disabilities. The clinical implications of these findings are discussed