Historically individuals with an intellectual disability were cared for at home or placed in workhouses with Dickensian conditions. From 1922 the Irish state took responsibility for those with intellectual disabilities, but these services have been enmeshed with and strongly influenced by the Catholic church which dominated health and social care provision in 20th Century Ireland. The Commission of Inquiry into Mental Handicap (Department of Health, 1965) marked a fundamental paradigm shift in disability supports by acknowledging that superior quality outcomes were afforded to those availing of community care when compared with those in institutional settings (O Doherty et al., 2014).
In 1996 A Strategy for Equality; the Report of the Commission on the Status of People with Disabilities was instrumental in proposing a rights-based approach to disability in Ireland. The Commission recommended that the Department of the Environment, Community and Local Government should develop a comprehensive policy on housing for people with disabilities with a view to affirming ‘the right of people with disabilities to live as independently as possible, if they so chose’ (O Doherty et al., 2014).
Since 1977, close to 300 research studies have shown that more personalised community based living has brought about improvements in many aspects of people’s lives (Tatlow-Golden et al., 2014). The findings show that overall individuals with intellectual disabilities show better outcomes by living in the community and this report by Trinity College showed strong evidence that moving from institutions to the community brought about positive changes in wellbeing as well as bringing about increased involvement in the community. Within the community some individuals may choose to live independently either in their own home or sharing, with support being supplied relating to the needs of the individual, which may range from minimal support to fully staffed (Tatlow-Golden et al., 2014).
Independent living involves more than housing, it requires personalisation and must be tailored to the needs of the individual. As a policy concept Independent living is about enabling and supporting disabled individuals to live their lives as they choose with having a sense of control over how they receive care and assuming as active a role as possible in determining their lives. This is based on “a social rather than a medical model of disability” (Hurstfield, Parashar & Schofield, 2007)
A literature review aims to provide the reader with the “current theoretical and scientific knowledge about a particular interest or problem” (Burns & Grove, 2011). The purpose of this literature review is to explore the evidence base and to investigate whether independent living for individuals with intellectual disabilities is improving health and wellbeing. The World Health Organisation defines health as “A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO 1948).
A search of the English literature was conducted using the following sources: James Hardiman Library resources and Google Scholar. The NUIG library databases searched were Scopus, Science Direct Journals, Taylor & Francis Online, JSTOR, SAGE Journals, Wiley Online Library and PMC. Key phrases used were: intellectual disability, independent living and health and well-being. Other key words searched included quality of life and adult. Boolean searching was used as a tool using AND, OR and NOT to refine the search. After exploring the abstract on 40 papers, 16 papers were retrieved and the 8 most relevant to the writers topic were chosen. The search, initially to 2007 was extended back to 2000 to open up additional results. The common themes that emerged were positive outcomes and happiness, self determination, health and wellbeing issues, autonomy in daily activities and the importance of planning, around staff and supports.
There is a shift away from shared living towards a more individualised experience based mainly on human rights, better quality of life, increased self determination and cost effectiveness (McConkey, Keogh, Bunting, Garcia, Iriarte & Watson, 2016). In most studies the theme emerges quickly from the data; moving to and living in the community house, with personal space and privacy, a sense of independence and social integration allows the individual with disability to experience self determination and ultimately a greater level of happiness (Sheerin, Griffiths, de Vries & Keenan 2015). This leads onto better health and quality of life.
Quality of life most often is a reflection of personal satisfaction. In the cases where the research was carried out with the person with intellectual disability themselves, the overarching impression that emerged from the interviewees was one of happiness with the current living condition (Sheerin et al., 2015). This was supported where the research was conducted with the support professionals. However in cases of older people, who might be more institutionalised or people with more support needs the outcomes were not always so positive. Health status will only improve where quality health services are implemented and provided in the community (Martínez-Leal et al., 2011).
People with mild and moderate intellectual disabilities have more control over everyday choices when living in their own homes as do those with more severe and profound disabilities who live in small group settings (McConkey et al., 2016). In one study a move to community living seemed to increase independence for the majority of individuals (Kilroy Egan, Walsh, McManus & Sarma, 2014). Paired results sample t-tests examined before and after a move to community based living indicated significant differences on both The Arc’s Self Determination Scale and the Autonomous Functioning Checklist. In both cases the mean scores were more adaptive after the person moved to the new environment (Wehmeyer & Bolding, 2001). Because self determination has been linked to positive adult outcomes and enhanced quality of life, it is important to consider the wants of the individual to enable them to live and work in their environment (Wehmeyer & Bolding, 2001).
A good quality of life should include physical, social, emotional, productive and civic well being (Kilroy et al., 2014). It is found that a move to community based living does not, of itself, lead to the improvements and a key finding is that the move has to be done to suit the individual (Wehmeyer & Bolding, 2001). Although a person with intellectual disability may be integrated physically into their community by using more community facilities, they are not necessarily socially integrated (Kilroy et al., 2014). The opportunity to move out of group homes may be compared to the natural development transition of moving out of a parental home (Hole, Robinson, Stainton, Lige & Crawford, 2015).
A study by Occupational Therapists experiences in dealing with participants before and after moving to an environment that was more community based and less restrictive setting, showed significant gains in self-determination and autonomous functioning, and reported more choice and opportunities. Persons with personalised living arrangements were more likely to have an individual personal plan and to have a circle of support (McConkey et al., 2016). Greater levels of ability for daily tasks were evident for people in independent and community groups (King et al., 2016). Regarding physical activities, over 70% of people living independently reported no difficulty in each of the daily activities, with over 90% reporting no difficulty in walking, getting in out of bed or toileting. Levels of daily activities were markedly lower in residential settings (King et al., 2016).
People living with intellectual disability may be at increased risk of occupational marginalisation, a form of occupational injustice where a person is excluded from meaningful engagement through lack of autonomy often exacerbated by social norms (King et al., 2016). Studies have found that factors outside the person, such as whether they live in an institution or live independently, have a significant influence on the ability of the person to engage in a meaningful occupation and that such preclusion from engagement on a meaningful occupation has a negative influence on well being and quality of life. Community based independent living has reported benefits of increased engagement, contact, and participation and acceptance in the community (Kilroy et al., 2014).
Implications for practice
A theme that recurs is that good planning is required to achieve a better outcome and prevent problems for the individual as they move out into a community based model of living. With relationships rated as the highest domain of importance for people with or without intellectual disabilities, the staff/service user relationships, the atmosphere of the community house, increased community access and compatibility with housemates are important. Well planned matching of the person with intellectual disability with the support provider in the community based living environment is crucial (Hole et al., 2015).
Other articles examined the role of staff and the changes needed in organisational culture and management to successfully provide personalised and independent community based living (McConkey et al., 2016). It is important to understand which appropriate supports will need to be in place and having all persons, staff, management, family, community and the individual involved in the implementation of the transition from start to finish. The staff is key to implementing change, facilitating independence and knowing likes and dislikes of the individuals (Kilroy et al., 2014). The management’s determination to support and guide the change through revised practices is necessary. If expectations are not properly managed family can become a barrier. The physical placement of the transition is not the end, community involvement is crucial to good integration. As always the individual is placed at the centre of the entire process (Sheerin et al., 2015). Success can be determined by level of support needs, those with higher support needs may need more determined planning (Mansell, 2006).
Ongoing focused support is critical and it must allow the individual as much opportunity as possible for self determination by promoting relevant skills, while at the same time being responsive to issues that may arise. For example self determination around food should not be taken to an extreme where obesity may result (Martínez-Leal et al., 2011).The right support would be focused on allowing the individual perform everyday tasks and ideally perform tasks that might allow them carry on a meaningful occupation in the community. It is important to understand appropriate supports that will need to be in place. Transition to community living does not automatically bring benefits such as increased independence and social engagement. Assumptions of staff or family members that a person is not able can lead to occupational marginalisation. Reluctance of staff or family members to take risks can lead to this too (King et al., 2016).
With regard to social inclusion, studies go so far as to suggest that the roles staff members adopt may be an even stronger determinant of social inclusion, than the setting in which the individual lives. This highlights that, given variability amongst staff priorities and interpretations, explicit guidance and training around how to facilitate social inclusion is required from management (Kilroy et al., 2014). Managers need to ensure that the process of enabling people to move to non-institutionalised living must be accompanied by intensive efforts to ensure adequate supports and accommodations to ensure community integration. An unwillingness of staff and family to take risks can limit the self determination possibilities and increase dependency levels above what it needs to be. Health status will only improve where quality health services are implemented and provided in the community (Martínez-Leal et al., 2011).
Efforts are being made to change how services are funded (Wehmeyer & Bolding, 2001) but it is important that the individual remains at the centre of the model. Despite the emphasis in policy documents on rights and the quality of life for people, there is plenty of anecdotal evidence that suggest that the market currently operates to maximise the number of places rather than service quality (Mansell, 2006). The rise of market based approaches to resource allocation and decision making has placed new service models in competition with each other. A central issue for the future is which results decision makers will give priority to (Mansell, 2006).
The fact that in most communities, it is people with mild and moderate intellectual disability that have been relocated, the people with severe intellectual disability must also be considered for relocation and their wishes must be paramount. Although there are concerns about the ability of individuals with severe disability to participate in research of this nature, the possibility of obtaining subjective feedback from these individuals should still be explored in future research (Kilroy et al., 2014).
Everybody is entitled for their human rights to be respected. People with intellectual disabilities have equal rights to experience a full life with the best prospects for health and well being. It is this, rather than budgetary considerations, or the views of support givers and the community that should influence the decisions regarding living arrangements for the people with disability.
The overall consensus from research is that in the majority of cases where people with intellectual disability were moved to live more independently in smaller community setting, this has resulted in positive outcomes. These outcomes include the persons happiness, quality of life, health and well being. Studies have shown that the more independent community based services are by far superior.
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