"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

Does personalised social care meet the needs of adults with mild to moderate intellectual disabilities?

This article is a summary of a paper delivered at the North-east of England Branch Annual Conference in September 2015. The presentation reported findings from a qualitative focus group study with adults with mild to moderate intellectual disabilities and representatives of community organisations providing support for people with intellectual disabilities (PwID). An overview of key findings is presented here, highlighting: (a) instances in which the personalisation agenda in social care, with its drive to reduce dependence and promote individual responsibility, can be at odds with the needs of PwID, and (b) some contextual constraints on agency and social inclusion within this population

“I’m able to function better when I know there’s a beginning and an end time”: Autistic adolescents’ experiences of lockdowns during the Covid-19 pandemic

Background and Aims: Survey research indicates that autistic children and young people experienced high levels of anxiety and isolation during lockdowns in response to the Covid-19 pandemic. Meanwhile, qualitative studies suggest that there may have been some benefits in the switch to home learning for this population. However, the majority of evidence to date comes from parent reports; the current study aimed to triangulate the perspectives of autistic youth and their parents in order to more fully understand the impact of periods of lockdown on education, relationships and wellbeing. Methods: Thirteen semi-structured interviews were conducted (six with adolescents; seven with parents) to explore the experiences a group of autistic youth aged 13 to 14 years (Year 9 of mainstream education in England) during a period of intermittent lockdown. Data were analysed using reflexive thematic analysis. Results: Two broad themes capturing commonality and diversity in the adolescents’ experiences of lockdown were developed. (1) ‘Different stress, not less stress’ encapsulates the finding that, despite the enforced removal from the school environment providing short-term relief, new stressors contributed to consistently high levels of anxiety for the young people throughout lockdown periods. Stressors included managing home-school within the family unit, navigating time without boundaries, and anxiety about the virus. (2) ‘A shrunken world’ reflects the heightened impact of losing access to meaningful social relationships, extracurricular pursuits, and health-promoting activities for autistic youth. Discussion: The early stages of the global response to the Covid-19 pandemic caused serious disruption to education for many children and young people globally; our findings provide further evidence that the impact was particularly salient for autistic youth in terms of social isolation, lost learning and heightened anxiety. Implications: These findings underscore the necessity of long-term support for the education, social needs and mental health of autistic young people in the aftermath of lockdowns in response to Covid-19

York ISL Supported Living Service Evaluation

A service evaluation of ISL's Living Service in the city of York. Mixed methods data were collected from among residents, staff, and parents. Findings indicate the diversity of residents and detail the largely positive experiences of living independently in the service. The Report offers recommendations for continued development

"There's 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 welfare reform in the UK

Adult social care services in the UK have undergone a period of transformation over recent years, characterised by a drive towards personalised care. Concurrently, social care budgets have been significantly reduced. This study aimed to explore the daily living experiences of adults with mild/moderate intellectual disabilities, who are at risk of no longer meeting eligibility criteria for statutory support. Focus group discussions, which included both people with intellectual disabilities and support workers, were analysed thematically. Two broad themes are presented: (1) independence and agency, and (2) social capital and wellbeing. While some participants echoed ideas central to the personalisation narrative, a number of contextual barriers to achieving greater independence and agency were discussed. Moreover, greater independence was not a desired or realistic goal for all participants. The findings highlight the potential mismatch between personalised social care, as delivered within significant budge

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Design and baseline characteristics of the finerenone in reducing cardiovascular mortality and morbidity in diabetic kidney disease trial

Background: Among people with diabetes, those with kidney disease have exceptionally high rates of cardiovascular (CV) morbidity and mortality and progression of their underlying kidney disease. Finerenone is a novel, nonsteroidal, selective mineralocorticoid receptor antagonist that has shown to reduce albuminuria in type 2 diabetes (T2D) patients with chronic kidney disease (CKD) while revealing only a low risk of hyperkalemia. However, the effect of finerenone on CV and renal outcomes has not yet been investigated in long-term trials. Patients and Methods: The Finerenone in Reducing CV Mortality and Morbidity in Diabetic Kidney Disease (FIGARO-DKD) trial aims to assess the efficacy and safety of finerenone compared to placebo at reducing clinically important CV and renal outcomes in T2D patients with CKD. FIGARO-DKD is a randomized, double-blind, placebo-controlled, parallel-group, event-driven trial running in 47 countries with an expected duration of approximately 6 years. FIGARO-DKD randomized 7,437 patients with an estimated glomerular filtration rate >= 25 mL/min/1.73 m(2) and albuminuria (urinary albumin-to-creatinine ratio >= 30 to <= 5,000 mg/g). The study has at least 90% power to detect a 20% reduction in the risk of the primary outcome (overall two-sided significance level alpha = 0.05), the composite of time to first occurrence of CV death, nonfatal myocardial infarction, nonfatal stroke, or hospitalization for heart failure. Conclusions: FIGARO-DKD will determine whether an optimally treated cohort of T2D patients with CKD at high risk of CV and renal events will experience cardiorenal benefits with the addition of finerenone to their treatment regimen. Trial Registration: EudraCT number: 2015-000950-39; ClinicalTrials.gov identifier: NCT02545049