‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Hamilton, Lorna; Mesa, Sue; Hayward, Emily; Price, Rhiannon; Bright, Graham

doi:10.1080/09687599.2017.1294049

Cited by 16 publications

(30 citation statements)

References 39 publications

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“…The concept of personalisation seeks to look at the person rather than the service; however, evidence to date has been mixed regarding its outcomes for service users (Hamilton, Mesa, Hayword, Price, & Bright, 2017). Criticisms include increased parental control over service users (Kendall & Cameron, 2014), particularly where the goals and needs of the individual are not always closely aligned with their families (Hamilton et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Comparing Traditional‐Residential, Personalised Residential and Personalised Non‐Residential respite services: Quality of life findings from an Irish population with mild–moderate intellectual disabilities

Nicholson

Guérin

Keogh³

et al. 2018

Brit J Learn Disabil

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Accessible Summary This study looked at differences between three types of respite care for people with intellectual disabilities. The three types of respite care were: 1) an overnight stay in a residential facility, 2) an overnight stay, where the person could choose where they stayed and what they did during their time in respite care, and 3) a non‐overnight service where people were supported to choose what they wanted to and who they wanted to spend time with in respite care. Where people using respite care had a choice as to how they spent their time they were reported to have higher levels of emotional well‐being, personal development, rights and interpersonal relationships. These results are important because they show that giving people choice in how they spend time in respite care might have better outcomes than Traditional‐Residential forms of respite care. Abstract BackgroundRespite care is an essential support for people with intellectual disabilities and their families; however, there is limited evidence examining different models of respite care. The present research examined quality of life among adults with intellectual disabilities using three different models of respite services in Ireland. MethodA quasi‐experimental research method was adopted, which sought to determine differences in quality of life across the three respite care groups using two measures, 1) a self‐reported quality of life scale and 2) a quality of life questionnaire filled out by a keyworker. Participants were people with mild/moderate intellectual disabilities (n = 82) and their keyworkers (n = 81). ResultsThree distinct models of respite services were assessed: (a) Traditional‐ Residential respite; (b) Personalised Residential respite, and (c) Personalised Non‐Residential respite. No differences emerged between the groups on self‐reported quality of life; however, the groups differed on a proxy measure of quality of life with respect to Rights, emotional well‐being, personal development and interpersonal relationships. ConclusionThe current data offer an initial exploration of self‐ and proxy‐reported quality of life among persons with intellectual disabilities in receipt of novel models of respite care in Ireland.

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Section: Discussionmentioning

confidence: 99%

Comparing Traditional‐Residential, Personalised Residential and Personalised Non‐Residential respite services: Quality of life findings from an Irish population with mild–moderate intellectual disabilities

Nicholson

Guérin

Keogh³

et al. 2018

Brit J Learn Disabil

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“…To date, there have been few cost‐benefit studies comparing the outcomes for service users receiving alternative service models, but these are necessary to assure governments of value‐for‐money (Beyer et al, ; Beyer et al, ). In particular, the opinions of service‐users and of their family carers to the day services they receive and the changes they have experienced deserves much greater scrutiny than has been the case to date in Ireland and in other countries (Hamilton, Mesa, Hayward, Price, & Bright, ).…”

Section: Discussionmentioning

confidence: 99%

Changes in the Provision of Day Services in Ireland to Adult Persons With Intellectual Disability

McConkey¹,

Kelly

Craig

et al. 2018

Policy Practice Intel Disabi

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Internationally, changes are advocated in the support available to persons with intellectual disability. Socially inclusive personalized arrangements are intended to replace congregated and segregated day services. The study examines the changes in the provision of day services within Ireland over a 5‐year period when new policies were being promoted but at time of economic stringencies. Secondary analysis was carried out on data extracted from the National Intellectual Disability Database on all persons aged 18 years and above in 2009 and 2014 who received day services, which were grouped into four main types: care centers, sheltered workshops, employment schemes, and vocational training. Participants in each type of service were profiled by age, level of disability, and living arrangements. Variations in the provision of these services across nine regions were also examined. In 2009, 59% of persons attended care centers, but the proportion had increased in 2014 to 69%. There were reductions in the numbers attending sheltered workshops (down from 23 to 16%) and those receiving employment supports (down from 13 to 11%). By 2014, variations in the numbers attending care centers were evident across the country. The increase in care provision does not accord with national or international policies. Rather, it may reflect ineffective policy implementation strategies and financial cutbacks which services experienced during this period. This study illustrates the value of a national dataset for monitoring policy implementation.

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“…However, becoming an employer requires considerable administrative and organisational skills, as well as a willingness to adopt personal risk (Flemming, McGilloway and Barry 2016). Understandably therefore many service users, including those with learning difficulties 1 , have been reluctant to take on this role (Lockwood 2014;Hamilton et al 2017).…”

Section: Expanding Opportunities To New Service Usersmentioning

confidence: 99%

“…Since the financial crisis, and the adoption of austerity across the global north (Farnsworth and Irving 2012), social care budgets have faced further constraint in the UK. Personalisation policies have been embraced in this context as a cheaper alternative to traditional service provision, leading to the closure of specialist services such as day centres (Hamilton et al 2017). One consequence has been the fragmentation of social networks of disabled people who have relied on these services, leaving them increasingly isolated as a result (ibid).…”

Section: Funding For Transformative Changementioning

confidence: 99%

‘It was clear from the start that [SDS] was about a cost cutting agenda.’ Exploring disabled people’s early experiences of the introduction of Self-Directed Support in Scotland

Manji

2018

Disability & Society

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‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Cited by 16 publications

References 39 publications

Comparing Traditional‐Residential, Personalised Residential and Personalised Non‐Residential respite services: Quality of life findings from an Irish population with mild–moderate intellectual disabilities

Comparing Traditional‐Residential, Personalised Residential and Personalised Non‐Residential respite services: Quality of life findings from an Irish population with mild–moderate intellectual disabilities

Changes in the Provision of Day Services in Ireland to Adult Persons With Intellectual Disability

‘It was clear from the start that [SDS] was about a cost cutting agenda.’ Exploring disabled people’s early experiences of the introduction of Self-Directed Support in Scotland

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