"There's a lot of places I'd like to go and things I'd like to do": Personalised social care, austerity, and adults with learning disabilities in York. A report on the 'LD Voices, York' project.

1. EXECUTIVE SUMMARY 1.1 Background: Social care in the United Kingdom has been transformed in recent years, driven by the implementation of the personalisation agenda alongside significant budget cuts, which have resulted in restricted eligibility for social care services. The personalisation agenda aims to eradicate a ‘one size fits all’ service, by providing individuals with the opportunity to contribute to the identification of their needs and the opportunity to choose and manage their own care through a personal budget. Previous studies evaluating the effectiveness of the personalisation model in the UK have reported that individuals who are more able, and who have stronger support networks, benefit most from personalised social care [1]; however, this same group is considered most at risk of becoming ineligible for statutory service provision due to restricted eligibility criteria. Reduction of budgets at a local authority level has also been associated with services only being provided to those individuals classified as having critical or substantial needs [2]. The current study aimed to explore the daily living experiences of a group of adults with mild to moderate learning disabilities (LD), who were either not accessing statutory social care services, or who were considered at risk of becoming ineligible for continued statutory support. The study was undertaken following a request from a voluntary sector forum, whose members were concerned about the impact of changes in the social care system on the lives of people with mild and moderate LD. 1.2 Method: • Seven focus groups were conducted, including 26 people with LD and 15 support workers, who were recruited via third-sector organisations. Participants were aged between 23 and 60. • A semi-structured question schedule was implemented, through which people were asked about their experiences in relation to managing their home, involvement in their local community, and access to healthcare, support services, education, employment and leisure activities. • The focus groups were video-recorded, transcribed and analysed thematically. 1.3 Findings: Themes identified in the focus group discussions are summarised below. Independence and control • People often wanted to live independently, but many found managing the transition into supported or independent living challenging. • Conflicts between the wishes of people with LD and their family carers can result in individuals becoming less of a priority for supported living allocation. • People valued employment and wanted paid work, but were concerned about the impact of this on their benefits. • People had difficulty in managing personal assistants (PAs) and reported having to fit in with PAs’ timetables. The role of employer was identified as stressful, with a lack of training and support provided. • The limited range of employment, social activities and educational opportunities available for people with LD is a barrier to independence. • Stereotyping of people with LD negatively influences employment and education opportunities. • Bullying and harassment in the community can impact on social inclusion and independence for people with LD. Social networks and wellbeing • Voluntary sector organisations offered opportunities to socialise within the local community, which were highly valued and improved quality of life. • Social networks have been fragmented following the closure of specialist day services, resulting in social isolation for some people. • Statutory assessment of need places more emphasis on basic living needs than on social relationships. • The high turnover of PAs made forming and maintaining relationships difficult. • A lack of social support limited opportunities for independence. • Mental health can be adversely affected by the breakdown of social networks. 1. 4 Conclusions Participants used the language of personalisation when talking about their aspirations for greater independence. However, they also identified a number of barriers to greater independence, e.g. not having adequate training and support in navigating the benefits system, or ‘managing’ a PA under the personal budget system, the lack of availability of educational, employment, and leisure opportunities and experiences of discrimination and harassment in the community. There were also examples of people who did not aspire to greater independence and who wanted more support but were not able to get this. The personalisation agenda, delivered in the context of an imperative to reduce spending, perhaps is not a good fit for these individuals. Voluntary sector organisations were seen as central to supporting social relationships, yet many of these organisations are also facing funding cuts. Strong social support networks were described as having a clear influence on quality of life and wellbeing. Wellbeing is now the responsibility of local authorities [5, 6] yet statutory assessment was described as not focusing on the development or maintenance of social networks. This study highlights the need to listen to the voices of people with LD. The findings of this report will be shared with organisations that plan, commission and deliver care to people with LD in York