Self-directed Support Research Articles

Disabled people negotiate gender, sexual identity and self-directed social care support in England: how does choice and control operate?

Putting disabled people in charge of their own support was a central component of the UK personalisation agenda. Austerity, staff recruitment difficulties and local authority retrenchment have meant that the experience for disabled people has not always lived up to the rhetorical promise. In this context, disabled people with marginalised sexual and/or gender identities face difficult choices in everyday interactions of support that trouble the idea that control routinely sits with them. In this article, we draw on two research studies with disabled people who use self-directed support in which they discuss navigating gender and sexual identity. In both studies, there are opportunities for disabled people to draw on support that is empowering, but we also hear about ‘bad bargains’ that they are sometimes forced to make. We argue that the hard-won goals of choice and control are being degraded and confronting LGBTQI+ and non-binary disabled people with sometimes impossible dilemmas.

The Hidden Work of Self-directed Support: A Seldom Heard Reality from the Perspective of Two Disabled Women

The Hidden Work of Self-directed Support: A Seldom Heard Reality from the Perspective of Two Disabled Women

CURRENT ISSUES BULLETIN

Personal assistance is the key to the realisation of the independent living principles, as set out by the worldwide Independent Living Movement. In Scotland, consideration is under way to bring personal assistance within the realm of mainstream social care. This paper discusses the current debate around such a move from the perspective of postcolonial theory. Although more commonly used in terms of the impact of Global North political philosophy and practices on the Global South, this paper uses the term to criticise the maintenance of professional and hegemonic power over disabled people within the process of managing personal assistance within Scotland’s ‘self-directed support’ programme. The potential development of training, registering, and regulating personal assistants within Scotland is discussed with reference to Altermark’s (2018) ‘post-institutional’ theory of community support and Ratzka’s personal observations of fake personal assistance programmes. Further, it is suggested that by incorporating Mladenov’s (2019) study methodology of ‘good’ personal assistance, international studies of personal assistance might highlight where and how postcolonising of personal assistance happens within different states.

Partnership and Personalisation in Personal Care: Conflicts and Compromises

Background:Personalisation in social care services has become a feature of the delivery of long-term care for disabled people in many developed welfare states.Aim:Scotland has used the devolution of health and social care powers to develop a personalisation scheme (known as ‘Self-directed Support’). The authors apply a theoretical and empirical framework to understand the experience of contemporary disabled users of personalised services.Methods:The authors use a Scottish data set of six focus groups and a survey of 126 disabled people and family carers.Results:The data showed that flexible funding and the ability to provide services that cross agency boundaries were instrumental in moving towards equitable outcomes.Conclusions:Although there are clear policy and practice barriers to inter-agency working in personalised care services, the evidence suggests that it is worth investing in overcoming these barriers for disabled people and family carers.

Self-Directed Learning Through Computer-Aided Mathematics Instruction: First-Year Teacher Education Experience

Objective: The study investigates first-year teacher education students’ self-directed learning through Computer-Aided Mathematics Instruction (CAMI).Methods: A total of 230 first-year mathematics teachers specialising in Further Education and Training (FET) phase teaching participated in the study, where responses from 50 student teachers were purposively and conveniently selected to report on in this paper. A qualitative research method approach was used and open–ended questionnaires were utilised to collect the data for first-year teacher education students’ self-directed learning. The questionnaires were analysed using descriptive data analysis.Results: Results of the study revealed that CAMI was used to monitor students’ learning, the time the learning takes place, the performance of the student within the duration of time, and to evaluate student performance. The results also revealed the skills that characterised self-directed learning and active learning where the student teachers were motivated to learn more and to solve difficult problems in mathematics.Conclusions: The study recommends technology integration, such as CAMI, in teacher education and teaching and learning in the Higher Education Institutions (HEIs), to promote self-directed learning and support effective learning for future learners.

Promoting human rights or increasing expectations? Effects of Self-Directed Support on the realisation of human rights in Scotland

This research investigated Scottish practitioners’ reflections on how local Self-Directed Support (SDS) implementations have affected the realisation of human rights. The findings indicate that SDS increased service users’ awareness of their rights but often in rather abstract ways, with service users (and practitioners) not getting information about SDS-related systems, processes, and procedures needed to make informed choices that support their human rights. The practitioners participating in this study found SDS systems and processes overcomplicated and struggled with accessing information needed for guiding service users. Although there is evidence that some processes are gradually becoming simpler, a focus on controlling resources has created a gap between the human-right-based ethos of SDS and its local implementations, reducing the ability of SDS to promote human rights and, according to some practitioners, just increasing service users’ expectations. This gap might be further widened by insufficient engagement with independent support and advocacy organisations. Points of interests: This article looks at whether Self-Directed Support in Scotland has achieved its aims to promote the rights of people with disabilities. Self-Directed Support is legislation that aims to promote human rights, such as dignity and self-determination, by giving people with disabilities more choice and control over the care they receive. Many practical obstacles make this challenging. This study found that people with disabilities have become more aware of their rights in general, but this often has not translated into getting care in a way that promotes their human rights. This study found that limited resources have meant in practice that local social work departments have focused on how to control their spending on meeting the needs of people with disabilities. This often has meant that the rights of people with disabilities have received less attention and have been neglected.

“I was never trained to do any of that” – personalisation and the impact of the “customer” on employment relations in voluntary sector social care

PurposeThe purpose of this paper is to examine the extent and impact of customer-oriented norms on employment relations in voluntary sector social care, within the context of personalisation. Self-Directed Support (SDS) is premised on the notion that customer-led care enhances autonomy among service users and therefore improves quality of life, and additionally, gives employees more discretion in their work. However, by attempting to improve quality of service without additional funding – and in many instances, with funding cuts – it can be argued that SDS is in practice effectively attempts to achieve “more-for-less.” This paper examines the effect of this dynamic on employment relations, using the organisation as the unit of analysis.Design/methodology/approachThis paper examines the existing literature on personalisation and SDS, and positions it alongside the sociology of service work. Particular focus is given to Korczynski's notion of Customer-Oriented Bureaucracies (COB). Data collection took place in four comprehensive case studies, comprised of fifty-five semi-structured interviews overall and a benchmarking survey of each.FindingsFindings demonstrate that the influence of customer-oriented norms only affected certain features of the employment relationship, and tended to result from pressures other than service users, such as organisational strategy or funding constraints. In consequence, none of the individual case studies fit the description of COB in its absolute form. Instead, what can be observed is a strong pattern of influence across specific dimensions of the employment relationship. In relation to policies and procedures, the impact of customer-oriented norms was experienced in 70% of instances, 83.3% of incidences pertaining to terms and conditions, and 85.7% of incidences pertaining to work organisation.Research limitations/implicationsThe data itself is limited to fifty-five interviews across four case studies, and so only gives a “snapshot” of employee relations within the sector. Further research would be advantageous to address these issues geographically and temporally.Practical implicationsFirstly, it contributes academically to existing bodies of literature on both voluntary sector social care and the sociology of service work. Secondly, it provides practitioners with analysis of the issues that accompany personalisation, and how adopting customer-oriented norms impacts the employment relationship. Thirdly, it demonstrates to legislators and commissioners that existing shortfalls in funding are compensated for by the above-and-beyond efforts of those who work in the sector, and that this is an increasingly untenable situation.Social implicationsThis paper sheds much needed light onto employment relations in the doubly under-researched areas of voluntary sector social care in Scotland. It attempts to aid employee relations pertaining to the often low paid social care workforce, and the care of service users who include the most vulnerable in society. By identifying potential issues pertaining to employee relations, it seeks to avoid future disruptions to service provision which could have adverse effects on organisations, employees, and service users.Originality/valueThis paper makes a theoretical and conceptual contribution by utilising the sociology of service work as a means of better understanding employment relations in voluntary sector social care. It compares the impact of customer-oriented norms across four distinctly different service provision types Furthermore, the segmenting of findings across three key areas of employment relations allows for a systematic analysis which pinpoints the presence and extent of customer-oriented norms and their influence on the employment relationship.

WORK FORCE COMPETENCIES AND TRAINING FOR SELF-DIRECTED SERVICE PROGRAMS

In 2017 over one million individuals of all ages were enrolled in approximately 260 self-directed long-term services and support programs nationwide. Research conducted by the National Resource Center for Participant-Directed Care (NRCPDS) and the Council for Social Work Education identified training gaps among current aging and disability network professionals and within social work education. Believing that both self-directing individuals and their family caregivers would benefit from a workforce that has the knowledge and skills to implement the principles of self-directed care, NRCPDS and CSWE working with national professional organizations and government agencies have identified workforce competency domains and developed a number of training resources that can be used in both academic and professionals settings. This presentation will review the work of NRCPDS and CSWE in workforce competencies, training resources, and recommendations for self-directed services training.

Social enterprise, social innovation and self-directed care: lessons from Scotland

PurposeThis study aims to explore the opportunities and challenges Self-directed Support policy has presented to Scottish social enterprises, thereby increasing understanding of emerging social care markets arising from international policy-shifts towards empowering social care users to self-direct their care.Design/methodology/approachThis study used guided conversations with a purposive sample of 19 stakeholders sampled from frontline social care social enterprises; social work; third sector; health; and government.FindingsAn inconsistent social care market has emerged across Scotland as a result of policy change, providing both opportunities and challenges for social enterprises. Social innovation emerged from a supportive partnership between the local authority and social enterprise in one area, but elsewhere local authorities remained change-resistant, evidencing path dependence. Challenges included the private sector “creaming” clients and geographic areas and social enterprises being scapegoated where the local market was failing.Research limitations/implicationsThis study involved a small purposively sampled group of stakeholders specifically interested in social enterprise, and hence the findings are suggestive rather than conclusive.Originality/valueThis paper contributes to currently limited academic understanding of the contribution of social enterprise to emerging social care markets arising from the international policy-shifts. Through an historical institutionalism lens, this study also offers new insight into interactions between public institutions and social enterprise care providers. The insights from this paper will support policymakers and researchers to develop a more equitable, sustainable future for social care provision.

Welfare Conditionality in Lived Experience: Aggregating Qualitative Longitudinal Research

Punitive welfare conditionality, combining tough sanctions with minimal self-directed support, is a defining feature of contemporary UK working age social security provision. This approach has been justified by policy makers on the basis that it will increase the numbers in paid employment, and thereby offer savings for the public purse that are also beneficial for individuals who are expected to be healthier and better off financially as a result. In this article, we aggregate two qualitative longitudinal studies (Welfare Conditionality, 2014–17; and Lived Experience, 2011–16) that document lived experiences of claiming benefits and using back-to-work support services. In both studies and over time, we find, contrary to policy expectations, that coercion, including sanctions, was usually experienced as unnecessary and harmful and that poverty was prevalent, both in and out of work, tended to worsen and pushed many close to destitution. Conditionality governed encounters with employment services and, perversely, appeared to impede, rather than support, transitions into employment for participants in both studies. These constitute ‘shared typical’ aspects of lived experiences of welfare conditionality. We propose Combined Study Qualitative Longitudinal Research as a new methodological approach to extend inference beyond the usual study-specific confines of qualitative generalisation.

Extending access to a web-based mental health intervention: who wants more, what happens to use over time, and is it helpful? Results of a concealed, randomized controlled extension study

BackgroundWeb-based mental health applications may be beneficial, but adoption is often low leaving optimal implementation and payment models unclear. This study examined which users were interested in extended access to a web-based application beyond an initial 3-month trial period and evaluated if an additional 3 months of access was beneficial.MethodsThis study was a concealed extension of a multi-center, pragmatic randomized controlled trial that assessed the benefit of 3 months of access to the Big White Wall (BWW), an anonymous web-based moderated, multi-component mental health application offering self-directed activities and peer support. Trial participants were 16 years of age or older, recruited from hospital-affiliated mental health programs. Participants who received access to the intervention in the main trial and completed 3-month outcome assessments were offered participation. We compared those who were and were not interested in an extension of the intervention, and re-randomized consenting participants 1:1 to receive extended access or not over the subsequent 3 months. Use of the intervention was monitored in the extension group and outcomes were measured at 3 months after re-randomization in both groups. The primary outcome was mental health recovery as assessed by total score on the Recovery Assessment Scale (RAS-r), as in the main trial. Linear mixed models were used to examine the time by group interaction to assess for differences in responses over the 3-month extension study.ResultsOf 233 main trial participants who responded, 119 (51.1%) indicated an interest in receiving extended BWW access. Those who were interested had significantly higher baseline anxiety symptoms compared to those who were not interested. Of the 119, 112 were re-randomized (55 to extended access, 57 to discontinuation). Only 21 of the 55 extended access participants (38.2%) used the intervention during the extension period. Change in RAS-r scores over time was not significantly different between groups (time by group, F(1,77) = 1.02; P = .31).ConclusionsOnly half of eligible participants were interested in extended access to the intervention with decreasing use over time, and no evidence of added benefit. These findings have implications for implementation and payment models for this type of web-based mental health intervention.Trial registrationClinicaltrials.govNCT02896894. Registered retrospectively on September 12, 2016.

EvoSketch: Simple simulations for learning random and probabilistic processes in evolution, and effects of instructional support on learners\u2019 conceptual knowledge

BackgroundStudents’ knowledge of scientific principles of evolution is often inadequate, despite its recognized importance for understanding biology. Moreover, difficulties associated with underlying abstract concepts such as randomness and probability can hinder successful learning of evolutionary concepts. Studies show that visualizations, particularly simulations together with appropriate instructional support, facilitate the learning of abstract concepts. Therefore, we have developed interactive, web-based simulation software called EvoSketch in efforts to help learners grasp the nature and importance of random and probabilistic processes in evolutionary contexts. We applied EvoSketch in an intervention study comparing four self-directed study conditions: learning with EvoSketch (1) alone, (2) combined with interpretative support, (3) combined with reflective support, and (4) using texts about randomness and probability instead of EvoSketch. All conditions received no support from any instructors. Knowledge about evolution as well as randomness and probability in the context of evolution, time-on-task, and perceived cognitive load were measured. A sample of 269 German secondary school students (Mage = 15.6 years, SD = 0.6 years) participated in the study.ResultsLearners using EvoSketch without additional support obtained higher follow-up test scores regarding their knowledge of randomness and probability than those using the text-based approach. However, use of the simulations together with given instructional support (interpretative or reflective) did not increase students’ performance, relative to the text-based approach. In addition, no significant between-intervention differences were found concerning the knowledge of evolution, while significant differences between the groups were detected concerning students’ perceived cognitive load and time-on-task.ConclusionsFrom our findings, we conclude that EvoSketch seems to have a very small positive effect on students’ understanding of randomness and probability. Contrary to our expectations, additional self-directed instructional support did not improve students’ understanding, probably because it was not necessary to understand EvoSketch simulations. When using EvoSketch in the classroom, we recommend increasing the intervention timeframe to several sessions and a variety of evolutionary examples for which EvoSketch serves as an underlying framework.

‘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

The adoption of personalisation represents a global paradigm shift in the organisation of social care. However, such approaches have been criticised for failing to bring about transformative change. The passage of the Self-Directed Support (Scotland) Act (2013) was intended to bring about a significant change in the organisation of social care in Scotland, giving increased choice and control to new user groups. The implementation of the policy at a time of significant financial constraint for local government has cast doubt on this potential. This paper presents findings reflecting disabled peoples’ lived experience of this change during the early stages of implementation. Drawing on one-to-one qualitative interviews with disabled people living across the central belt of Scotland, this early snapshot suggests that the policy had not significantly increased choice and control for service users, and that austerity was leading to an erosion of gains made by existing Direct Payments users.

Priorities for long-term care resource allocation in England: Actual allocation versus the views of Directors of Service and older citizens

Context:Decisions about resource allocation in long-term care are a perennial issue. The basis for deciding between different needs in prioritising allocation is contested. In England, this debate has crystallised with the advent of selfdirected support, where individuals’ expressed preferences drive resources. Objectives: To compare perceptions of the priority given to needs for resource allocation in long-term care of older people by two stakeholder groups, compared with actual resource allocation. Methods: Survey data, eliciting perspectives of senior service managers and older citizens, were used to rank the perceived importance of eight needs-related outcomes. Actual resource allocation from 17 local authorities was also modelled against these outcomes. A variable importance metric was used to rank the importance of these outcomes in determining actual resource allocation. Findings from each data collection were compared. Findings: Differences in prioritisation of needs emerged between stakeholders compared with actual allocation. Older citizens and actual allocation prioritised basic and instrumental activities of daily living (ADLs). Directors’ rankings were more distinct, still prioritising basic ADLs, but ranking psychological well-being higher and instrumental ADLs lower. Limitations: The model of actual allocation could not account for political and bureaucratic factors influencing resource allocation, nor the complexity of certain needs that might incur greater resources. Implications: Discretion continues to influence resource allocation, which remains a contested area. Directors must account for overall spend and other extrinsic factors to maintain sustainability, whereas older citizens prioritise instrumental ADLs, despite these being considered lower priority in eligibility decisions. Overall, ADLs remain important drivers of allocation.

Perspectives of the National Disability Insurance Scheme: participants’ knowledge and expectations of the scheme

Limited research investigates future participants’ perspectives of the National Disability Insurance Scheme (NDIS) – Australia’s first national attempt towards self-directed disability service provision. To identify future participants’ perspectives, seventy people with disability in South-East Queensland participated in an interview. Over half the participants demonstrated having little to no knowledge of the NDIS. Participants’ expected that: (i) they would make decisions around organising and paying support and (ii) that their current service provider would provide the support. Participants also indicated that training around budgeting and hiring would be essential to ensure their successfully engagement with the NDIS. The findings are timely and provide a first-hand account of how people with disability intend to engage with self-directed support programs. Findings also imply that targeted information dissemination and participant training and support are necessary to ensure their successful participation within self-directed programs.

The morphogenesis of disability policies and the personalisation of social services. A case study from Italy.

ABSTRACTAcross Europe, and particularly since the 2008 Financial Crisis, new demands for tailor-made services came from different actors and perspectives: user-led organizations, intellectuals, policy makers, social workers, advocacy organizations, which call for a new way of programming, realizing and evaluating social policies. Personalization became a relevant part of the so called ‘welfare innovation narrative’, which concerns – to name but a few – English personalization agenda, Scottish self-directed support, Finnish education system, Norwegian cash-for-care policies. Even the European Commission is addressing new social services, reshaped through users’ capabilities. The aim of this paper is to critically explain, through a case study focused on the Sardinian disability policy, how social policy's morphogenetic cycles influence the governance of personalized disability plans and, consequently, the possibility of their implementation.

Changing the culture of social care in Scotland: Has a shift to personalization brought about transformative change?

AbstractIn April 2014, the Social Care (Self‐directed Support) (Scotland) Act 2013 (SDS Act) was implemented in Scotland. This marked a major shift in how social care is delivered and organized for both users and professionals across the country. Whilst it emerged through the personalization agenda—which has dominated international social care systems over recent years—self‐directed support (SDS) represented a significant shift in thinking for service provision in Scotland. In this article, we review the initial stages of policy implementation. Drawing on two Freedom of Information requests from 2015 and 2016 and a series of interviews with local authority practitioners, we argue that, to date, SDS has yet to produce radical transformative change. We explore the reasons behind this through four key themes. First, we highlight the challenges of promoting the principles of co‐production in policy and suggest that, in reality, this has been compromised through SDS implementation. Second, we suggest that SDS has been caught up in a policy overload and ultimately overshadowed by new legislation for health and social care integration. In looking at the impact of this relationship, our third theme questions the role of new partnership working. Lastly, we argue that the timing of SDS in a period of acute austerity in social care has resulted in disabled people being offered limited choice rather than increased opportunities for independent living.

From charity to social enterprise: the marketization of social care

PurposeIn Scotland, the self-directed support (SDS) legislation is a catch-all payment system which brings challenges to local authorities, service delivery organisations and the service users it is intended to empower. Set against a backdrop of cuts to local authorities and third-sector funding, this policy presents third-sector organisations with both the opportunities and challenges of commercialising their activities to become more sustainable. The purpose of this paper is to provide evidence of the challenges faced by one charity as it engages in a process of hybridity to accommodate changes in its funding due to the introduction of SDS.Design/methodology/approachThe paper utilises a case study approach. The paper captures the experiences and views of managers, staff and parents advocating for their children through interviews with a purposive sample from each group. The challenges of gathering data and giving a voice to caregivers advocating for children with complex needs are discussed, particularly the difficulties in accessing a hard to reach group.FindingsThe findings identifies issues which have arisen because of the proposed changed in strategic direction of the organisation due to the introduction of SDS and are all related to hybridity. The findings are arranged in four sub-sections based on the themes that emerged from the qualitative data generated from the interviews: the practical delivery of care; tensions between care and quality, the care workforce, and the parent perspective.Research limitations/implicationsSDS policy has had unexpected impacts and reactions whilst rolling out across regions in Scotland, but policymakers and those involved in the care sector, including consumers, face significant challenges in gathering evidence not only from the vulnerable populations this policy affects but also from organisations already under pressure from austerity-led cuts. This paper presents the challenges to organisations involved in caring for children with complex needs, who are a particularly neglected group of stakeholders.Practical implicationsOrganically arising barriers to organisational transition from charity to social enterprise are presented, as staff and caregivers react to the prospect of SDS uptake affecting their organisation. Proactive attempts to embrace a hybrid approach by the organisation are analysed.Social implicationsUnderstanding how social care organisations and clients are reacting to the implementation of individual payments as opposed to the previous system of block contracts is crucial as the sector faces very real prospects of organisations closing when individuals are able to pick and choose care. A policy based on choice and control for the consumer risks removing choice through a loss of services in the marketplace, leaving vulnerable populations at risk.Originality/valueThis study is unique. No research has been done exploring the transition of charities servicing children with complex needs in anticipation of self-directed payments creating an open market. The paper further contributes to the existing knowledge regarding hybrid organisations within the third sector.

Exploration of Choice for Older People with Daily Care Needs: Scottish Professionals’ Perspectives on Self-Directed Support

ABSTRACTThis article explores The Social Care (Self-Directed Support [SDS]) (Scotland) Act 2013 developments, influence’s on individuals informed choices for care decisions and implications for direct practice situations. The article discusses perspectives from 18 professionals and front-line care workers interviewed in Scotland on SDS policy changes. Barriers included attitudes on dependence, power and control, shortage of direct client contact time, clients becoming “employers,” and reductions in the number of qualified social workers. Some recommendations included allowing social workers freedom of creativity, sharing and application of practice experience. Findings revealed an outcome-focused, person-centered approach was utilized to support an independent living environment.

Accessing care coordination information: the non-statutory sector contribution

Purpose The provision of information and advice for older people arranging their own care is a policy objective. The purpose of this paper is to explore the range and scope of web-based information about care coordination activities for older people in the non-statutory sector in England. Design/methodology/approach Non-statutory organisations were identified through a structured internet search. Services were screened to identify those providing at least one care coordination activity. A postal survey of services was conducted in 2014 and results compared with the initial findings of the web search. Findings Almost 300 services were identified, most of which were provided by three organisations: Age UK; Alzheimer’s Society; and the British Red Cross. Brokerage was the most frequently reported care coordination activity; the majority of services focussed on help to stay at home; and carers and older people (including those with dementia) were the target groups most often identified. Comparison of the two information sources revealed a significant agreement between two care coordination’s activities: compiling support plans and monitoring and review. Research limitations/implications Findings are based on a purposive sample of organisations and therefore care must be exercised in generalising from them. Originality/value This study is one of the first to systematically explore the nature and extent of information about care coordination activities provided by the non-statutory sector in England. It was conducted when policy advocated both an increased role for the non-statutory sector and an increase in self-directed support.