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Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets
- Authors:
- MELTZER Ariella, et al
- Journal article citation:
- Evidence and Policy, 17(2), 2021, pp.335-347.
- Publisher:
- Policy Press
Background: Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services. Key points for discussion: Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively. The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary. Conclusions and implications: To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts. With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability. (Edited publisher abstract)
User-driven commissioning: building on the 'lived experience' of disabled and older people: the most under-used resource in social care
- Author:
- SASS Bernd
- Publisher:
- Disability Rights UK
- Publication year:
- 2012
- Pagination:
- 56p.
- Place of publication:
- London
This report sets out the background to and learning from an informal national programme on user-driven commissioning which culminated in a roundtable event in London in December 2011 and has been further developed since. The aim of this event was to bring together the key stakeholders involved in six pioneering local initiatives that have been taking forward this approach since at least March 2011. This publication reports the background and findings as a resource to help roll out this approach in social care and health, which can turn the rhetoric about user-centred and user-driven support into reality with numerous positive by-products. The report draws on the development paths taken on the six sites as well as on the discussion between a wide range of co-productive service users, disabled people, commissioners and friends and supporters. The report suggests that user-driven commissioning may well help prevent abuse in future. Disabled people have the passion and empathy to support others and have learned to come up with creative solutions to a crisis and the challenges of everyday life. Disabled people make sense of a condition and contextualise this within every aspect of their life. They see both what and how things could improve.
The contribution of Nasa Begum to the disabled people's movement and social care field
- Author:
- TURNER Michael
- Journal article citation:
- Ethnicity and Inequalities in Health and Social Care, 5(2), 2012, pp.38-42.
- Publisher:
- Emerald
Nasa was a black disabled woman who used mental health services. The paper provides information on Nasa's background and her work as a social worker, researcher and activist in the disability movement. It focuses particularly on how she brought the perspectives of black disabled people to the disabled people's movement and the health and social care field. The paper demonstrates that Nasa has left a clear legacy of principles that show how things can and should be done when policy makers and service providers want to work in an inclusive way. (Edited publisher abstract)
Caring for our future: what service users say
- Authors:
- BERESFORD Peter, ANDREWS Eamon
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 76p.
- Place of publication:
- York
There are growing concerns among disabled people and other social care service users that their voices are not being heard at a time when major reforms in social policy are taking place which are particularly impacting on them. This report shares the results of a consultation held in November 2011 on social care reform. The consultation was carried out by Shaping Our Lives in association with the Centre for Citizen Participation at Brunel University. This report, based on the views of 27 people, from a diverse range of independent adult social care service users from different areas in England, identifies issues important that are important to service users, including funding, damaging effects of public spending cuts, hostility towards disabled people and user involvement; discusses proposed changes, including funding, to the social care system; and makes recommendations on the future of adult social care.
A guide to implementing assistive technology for people with learning disabilities
- Authors:
- BEYER Stephen, PERRY Jonathan, MEEK Andrea
- Publisher:
- Home Farm Trust
- Publication year:
- 2009
- Pagination:
- 50p.
- Place of publication:
- Bristol
This handbook has been produced for for organisations and families who wish to implement person centred technology. The guide expertly lays out the case for assistive technology and telecare, putting it in context - how and why it should exist alongside existing services - and provides a clear guide to implementation.
Tickboxes and tokenism?: service user involvement report 2022
- Authors:
- BATTY Gillian, HUMPHREY Gemma, MEAKIN Becki
- Publisher:
- Shaping Our Lives
- Publication year:
- 2022
- Pagination:
- 13
- Place of publication:
- Basingstoke
... throughout the survey. It showed the importance of feeding back to people involved what the outcomes of the work were. Over half (56%) of respondents have difficulty getting their access and support needs met (rising to 89% for the BSL survey). There were a range of reasons given: cost, lack of understanding or awareness, invisible disabilities, multiple disabilities or complicated requirements, reluctance (Edited publisher abstract)
Direct payments: pure dead brilliant!
- Author:
- GLASGOW CENTRE FOR INCLUSIVE LIVING
- Publisher:
- Glasgow Centre for Inclusive Living
- Publication year:
- 2017
- Pagination:
- 36
- Place of publication:
- Glasgow
In this booklet, disabled people and carers living in Glasgow explain how they have used a direct payment to create support packages that suit their particular needs. For many, a direct payment offers the most control and flexibility. However, some people don’t consider them because they’re put off by the idea that they’re too complicated or difficult to manage. These 15 personal accounts show that a direct payment can be the best option and often repays any extra effort that might be involved. (Edited publisher abstract)
Service user research in social work and disability studies in the United Kingdom
- Authors:
- BOXALL Kathy, BERESFORD Peter
- Journal article citation:
- Disability and Society, 28(5), 2013, pp.587-600.
- Publisher:
- Taylor and Francis
In recent years, there has been growing interest in the involvement of service users in research as well as in research studies that are led by service users. Although this interest in service users’ roles in research has been evident in both social work and disability studies, the two research disciplines have remained remarkably separate in the United Kingdom. This paper examines the epistemological underpinnings of social work research and disability studies research and explores the tensions, possibilities and power dynamics of collaboration between the two research disciplines in the United Kingdom. It concludes by outlining possibilities for social model approaches to social work research. (Publisher abstract)
The best things in life are free: community-powered advocacy
- Author:
- WIGHTMAN Clare
- Journal article citation:
- Working with Older People, 17(1), 2013, pp.25-31.
- Publisher:
- Emerald
Purpose – This is an opinion piece about exploring fresh approaches to advocacy for older and disabled people. The purpose of the paper is to suggest a new role for professional advocates. Professional advocacy help can be an important first step to a stronger life or it can be a revolving door. It makes all the difference when we've got people around us who can help us to get over problems, and not feel we're stuck on our own. But most users of services have no one whom they can turn to when things get tough for them. What if we designed advocacy services so they acted on the causes of demand for advocacy, rather than delivered a number of advocacy transactions? Design/methodology/approach – This article uses the experiences of Grapevine in Coventry and draws on the findings of a project conducted with advocacy organisations in the Midlands and South East, many of whom felt that professional advocacy was not getting to the root of the problem. Findings – Advocacy practice is about being a corrective to failures in other services and an intermediary between service users and providers. It can be very vulnerable at times to being seen as an “add-on” of unproven value. Practical implications – The article asks practitioners to consider the new role advocates might play in developing and connecting networks of local people for mutual help and support. This “community-powered” advocacy could provide effective root cause help and protect the sector's legitimacy during unprecedented financial austerity. Originality/value – The paper is of value to practitioners and commissioners of advocacy services.
Secondary analysis of existing data on disabled people's use and experiences of public transport in Great Britain
- Authors:
- JOLLY Debbie, PRIESTLY Mark, MATTHEWS Bryn
- Publisher:
- Disability Rights Commission
- Publication year:
- 2007
- Pagination:
- 105p., bibliog.
- Place of publication:
- London
One of the main purposes of the research was to investigate whether existing large-scale datasets might be exploited for secondary analysis in support of Disability Rights Commission (DRC) objectives. Given the context of the tender, the data sources were largely unknown at the beginning of the contract and the research methods were therefore exploratory. This had the advantage of opening new areas of enquiry and producing some profitable results without the need for expensive new data collection. However, there were also limitations on what could be achieved with data that had been collected by other research teams for other purposes, and the extent that this could be manipulated in a reliable way. For example, as most of the datasets were not specifically concerned with disability, disabled respondents were often few in number (making it impossible to draw many detailed conclusions beyond the national level). There were also limitations on transferability arising from the different definitions of disability used in different surveys. An overview of the characteristics, strengths and limitations of each major dataset is included. Producing this report has therefore been a considerable task, involving detailed work on individual datasets and the production of several hundred pages of output for analysis (in addition to the time involved in obtaining multiple datasets and becoming familiar with their characteristics). The significance of each individual data find had to be tested and in many cases rejected as lacking reliability. Some variables and data had to be extensively manipulated or transformed in order to produce relevant findings. In a longer timescale and with more prior knowledge of the available data, more complex analysis could also be achieved using regression techniques and tests of association between variables. However, this has been a productive process and much has been learned in collaboration with the DRC project officer. One of the conclusions of this report is that existing surveys are not providing a complete picture upon which to base disability policy and that there is a case for larger-scale research to support DRC objectives and policy evaluation.