Why am I doing this research?In 2009 Westminster City Council started an individual budgets pilotIt was my feeling that as individual budgets was a scheme that concerned disabled people that we should seek to actively participate in the pilot and not rely on the council to design the process and to consult us after the fact. In addition to this claims had been made by organisations such as In Control about how IBs have transformed peoples lives for some years but again the research published by In Control was council led and in my view the citizens were viewed as research subjects rather than active participants. I was interested and wanted to investigate what the emancipatory elements were from the perspective of disabled people and if the research and process was co-designed by them if the outcomes would be different.Was it just the mere fact that it was a new processWas it the fact that people got given moneyWas it that they had more controlA greater ability to make changes for themselvesThe main aim of the research was to seek to generate new knowledge through analysing of some of these processes.The rationale is to investigate if the process of self directed support can lead to increased emancipation through power shifts between disabled people and welfare professionals.
The research will:Refer to slideThere were other intersections The interface with CILsTo what extent peer support helped to achieve micro and macro changesTo what extent training supported self-determination Observations of shifts in power from social services towards self determinationTo what extend this relied on co-productive working with professionalsHow personalisation addressed individual requirements
The theoretical discourse underpinning the research are:The Social Model of DisabilityThe Nature of PowerThe process of emancipationCopy page 8 hereI should start by qualifying why the research is underpinned by the Social Model of Disability I understand that to some extent it has become the ‘new orthodoxy because of its relevance to disabled people However as a theoritecal discourse it seeks solutions to social practices and structuresSeeks to empower not pathologies disabled people The social model of disability seeks to redress some of the power balances between disabled people and welfare professionals However it could be argued that welfare professionals use the medical model not to oppress disabled people i.e that it may not be an issue of power but say an issue of knowledge
Intrestingly Drake asserts that if participation in decision making is to mean anything beyond tokenism or manipulation then three pre-conditions to participation need to be fullfilled. These [re-requisites would suggest to me that disabled people do not currently occupy these roles and spaces. This maybe due to a knowledge deficit on the part of disabled people, in which case were is the evidence for knowledge sharing? And why are services designed for disabled people? More importantly why would drake require these pre-requisites if it was just about a knowledge gap? The knowledge of welfare professionals may have brought them to a position of power but (i) their knowledge is predicated on the medical model and (ii) their position of power is synonomys with their need to keep disabled people dependent. The clearest practical example of this that I have from the research are that the welfare professionals in no way sought to include disabled people as partners when piloting the SDS process, they did not recognise it as a process that users of services should control and manage. The local user-led organisation had to insist on being involved and were given permission on the proviso that they would not be given any resources or support by way of training or practical help.However, as there internal project failed to yeild and positive responses and as our parallel project was proving to be a success they covertly wrote the pilot project up as their own and presented it to the LGA as their project.It was not until disabled peopled had proved to them the value of the project that they began to engage.
On the process of emancipation woodward argues that there are four pillars which are at the core of emancipatory services.Working backwards and starting with participation I felt that it was impossible to conduct any research on Individual budgets without first seeking to include those people who would be wanting to try taking an IB.My journey began by developing an extensive advertising campaign to attract individuals to participate in the research. Following ethics approval posters and flyers were distributed widely across Westminster and I received some 20 responses. I invited all the indviduals to an introductory session were having developed a booklet describing the research what would be involved and what they could expect from me and me from them a total of 10 individuals decided to participate in the project. These 10 people consisted of 5 male and 5 female participants with varying impairments and social care needs ranging from moderate levels of personals care support ranging to 24hours care needs. 4 individuals were receiving a Direct Paymet 6 were not all the participants were under 65yeard of age.
The methodology chosen for the research was one of PARThe challenge for this project will be to ensure that the research is controlled and managed by disabled people throughout. French and Swain (2004) advocate that people need to start by asking the following questions: 1. Does the research address the concerns of disabled people themselves? 2. Does the research promote disabled people's control over the decision making process which shape their lives? Why use PAR? Next slide
Learning and the creation of knowledge are co-generated in PAR and take place on several levels:Level 1: Is developing the skill of working in a team or partnershipLevel 2: Is developing the ability to identify problems reach a common understanding and create solutions to those problems in a local setting. The action that comes from trying out suggested solutions (implementations of plans) lead to the third levelLevel 3:Of learning (or knowledge) namely competencies. Competencies is when techniques to implement a sepcificsolutuion has been mastered. When documentting the implementation process of effective solutuos a fourth level of knowledge is created
The 4th and final level or dimention (read slide)
I intend to use my chosen methodology of PAR in an emancipatory way by involving disabled people in an ongoing, mutually interactive way, so as to critically evaluate the processes that lead to more empowerment, specifically through peer support and collective moibilisation. This is especially the case for this research as the nature of power manifests itself within the interactions of individual disabled people, the collective group of disabled people in their endeavour to collectively mobilise, and in the interactions of the collective group towards Social Services as an organisation, and individual professionals within the organisation.
This is a two fold issue:One of design and the other of methodologyOn the design side I wanted to include disabled people throughout the process in what was an actual project with practical outcomesOn the methodological side having investigated other qualitative methodologies PAR seemed to me to be the most approprate when you take into account the theoretical discourse described above and especially as it is action-based methodology rooted in the improvement of social justice goals.I am implementing the research questions by investigating power shits for disabled people leading to greater emancipation by involving disapled people throughout and by observing and analysing changes in power relations.The issue of power, power shift, and peer support as a conduit for collective mobilisation needs to be investigated further through the journals and by introducing interviews as a methodology to understand the emancipatory nature of the research.
I am aware that disabled people are classed as vulnerable adults and have followed procedures including seeking clearance from the ethics committee at the university. I have considered issues of confidentiality trust anonymity and fair treatment of all. Disabled people have met outside focus group meeting to provide an account of the procedure and have wanted this to be filmed as a testament to their involvement and voice.Participants are free to withdraw from my sample at any time.
A common criticism of qualitative research is that it is particularly prone to bias and invalidity because `the researcher' is `the research instrument' (Hammersley and Gomm 1997:3). With insider research, the issue of bias becomes more salient because of the researcher's involvement with the research context. Fraser acknowledges that some may accuse her of being `biased towards establishing the effectiveness of a programme for which she is responsible'. There was a danger that her interest in the programme's success may have prompted her to probe for information that she wanted to hear, or gloss over information that did not suit her agenda.A common criticism of qualitative research is that it is particularly prone to bias and invalidity because `the researcher' is `the research instrument' (Hammersley and Gomm 1997:3). With insider research, the issue of bias becomes more salient because of the researcher's involvement with the research context. Fraser acknowledges that some may accuse her of being `biased towards establishing the effectiveness of a programme for which she is responsible'. There was a danger that her interest in the programme's success may have prompted her to probe for information that she wanted to hear, or gloss over information that did not suit her agenda.It could be argued that my insider status may make it harder to ‘construct’ the bigger picture than outsiders since the temptation to see everything through their own eyes (Clinton Bennett,1993). However by utilising reflexivity the researcher can go some way to overcoming this perceived problem. According to Newman “A…researcher takes advantage of her personal insights feelings and perceptions…but takes measures to guard against the influence of prior beliefs or assumptions…rather than hiding behind ‘objective’ techniques, she is forthright and makes her values explicit in a report”. (Newman,1994:32). Newman argues that a researcher’s own influence, agenda and beliefs affect the research process whether they are an outsider or insider researcher. By introducing reflexivity within this research I can constantly reflect on how my feelings and thoughts are influencing the research, and being prepared to declare this throughout the research process is key therefore field notes will provide important data as I record my responses to the minutes of meetings.Reflexivity involves an in-depth personal biography that is an intrinsic part of the research. The pre-existing views, values and experiences of the researcher are laid bare and it is acknowledged that these shape research. Stanley (1991) uses the term "intellectual autobiography" rather than personal biography - and in fact the former term better depicts the analytical process being carried out here."Intellectual autobiography, then, is the careful analytic explication of the reasoning procedures used in interpreting and theorising whatever research data the researcher is concerned with” (Stanley,1991:211). My subjectivity, my feelings and my experiences, public and private, could not be wrenched from it [the research] because they provide both the motivation and much of the material for it" (Roseneil, 1993:181).Roseneil therefore advocates that reflexivity and partisanship are an inevitability that should not only be recognised but seen as a positive input to the research procedure."To do research which is uncontaminated by personal and political sympathies... therefore...the question is not whether we should take sides, since we inevitably will, but rather whose side are we on" (Roseneil,1974:107).
The tecniques that sit along side each of these approaches are (next slide…)
This technique is best suited to PAR and to the context of the study being about real people with their subjective and objective experiances with a forum for their voice to be heard and acted upon this technique fits with the primary objective to investigate the process of collective mobilisation and empowerment through peer support. Given the small number of participants in my sample it is my intention to provide a line by line narative analysis of the focus group minutes. Fraser (2004) provides practical guidance on how this might be possible. These are described in great detail in seven stages: 1. HEARING THE STORIES, EXPERIENCING EACH OTHER’S EMOTIONS2. TRANSCRIBING THE MATERIAL3. INTERPRETING INDIVIDUAL TRANSCRIPTS4. SCANNING ACROSS DIFFERENT DOMAINS OF EXPERIENCE5. LINKING ‘THE PERSONAL WITH THE POLITICAL'6. LOOKING FOR COMMONALITIES AND DIFFERENCES AMONG PARTICIPANTS7. WRITING ACADEMIC NARRATIVES ABOUT PERSONAL STORIES Its narrative because it involves personal story telling which we then analyse
Narrative approach facilitates methods of analysis becauseDisabled people are inking their subjective experience to a shared political understandingDisabled people are finding a voice rather than being isolatedMovement from research to action allows from more emancipation through the process of telling their stories and sharing their experiancesMost impoerantly the interviews will draw out what is important to disabled people and is pivitol for drawing out their concerns This technique is being used in a concrete context of achieving outcomes as outlined in individuals support plans and investigating empowwerment on an indivdual level Will give a comparitor to collective group analysis“Narrative research can provide an opportunity for meaningful dialogue that leads to praxis, especially in the context of PAR that aims to build capacity and move from research to action” (Shauna MacKinnon 2009:10). This is significant as we move towards the building of capacity from within the disabled community through the development and dissemination of brokerage training developed by the participants.I hope the introduction of interviews will help to expand the research and provide a greater voice to the disabled people who have been through this process.“By entering into dialogue with others, narrative interviewers may unearth hidden or subordinated ideas. These ideas are important because they may cast doubt on official accounts and established theories In turn, the ‘ﬁndings’ produced may lead to the development of new theories that resonate more with people’s lives” (Fraser 2004:184).We hope to formulate the open ended questions together to increase the participative nature of the process more as open ended headings that can be explored through dialogue.
In analysing the participant journals I intend to utilise QDA“Qualitative descriptive analysis provides a framework where personal journals can be analysed for the written descriptors that they contain. The flexible nature of qualitative descriptive analysis research makes it a suitable method to understand the meaning or interpretation of subjective experience” (Findlay et al 2010:2). QDA involves seven key stages in the analysis of journals and is systematic in its approach Step 1: The researcher notes any opinions or bias they have before beginning to read the journals, and records these notes into an Excel spreadsheet. Step 2: The researcher reads all the journals and makes notes on their general feelings, again recording these notes on an Excel spreadsheet. Step 3: The researcher rereads the journals and identifies categories and topics that emerge from the data. Step 4: The identified categories and topics are entered into an Excel spreadsheet, together with supporting quotations and their location in the text. Step 5: The categories or topics are examined for commonalities. The researcher and a second independent expert review these and then meet to brainstorm on ideas, including by identifying subcategories. Step 6: There is a testing of content and face validity: content validity assesses the findings by comparing similar studies for commonalities which have emerged from the data; face validity examines whether the data is covering the necessary themes to enable an assessor to describe the context of the study, and where it is going, independently of the researcher. Step 7: The coding sourcebook which has resulted from the researcher's work can be used by another researcher to re-analyse the results. Data analysis therefore will remain qualitative and will depend on emancipatory principles to determine the research. This is because such principles liberate oppressed groups (Seale, 1999:11).
This diagram represents what the process was before the implementation of the piot project.The entire process is controled and managed by social care professional.
Most notably there is no opportunity for learning or knowledge athough at first glance it does meet one pillar of emancipatory services as outlined by woodward being self-assessment.Arguably the process also supports self-management through support planning and receiving a direct payment.
This represents a snapshot of what is captured in the focus group minutes. Three participants agreed to share their views on film with each other and with the council.
Mid Point Progression: Part 1
A Study in the Empowerment of DisabledPeople Through an Analysis of Processes of Emancipation MID-POINT PROGRESSION MARYAM ZONOUZI
The Project To investigate if the process of obtaining an Individual Budget could lead to empowerment for the individual concerned. To investigate what extent any collective mobilization would result in a power shift between disabled people and welfare professionals. To examine any resulting changes to practices, policies and procedures.
Theoretical Discourse The Social Model of Disability The Nature of Power The Process of Emancipation
Theoretical DiscourseA. Disabled consumers must have the capacity actually to exercise power.B. Disabled consumers must occupy roles in which power can be exercised. We must have authority.C. Disabled consumers’ role must be situated within links and networks that the exercise of power is effective; that it achieves its purpose. F Drake, 1992
Methodology PARTICIPATIVE ACTION RESEARCH DIAGNOSING Identifying or defining a problem SPECIFYING LEARNING ACTION PLANNING Identifying general Considering alternative Development courses of action forlearning and making of a client- it public solving a problem system infrastructure EVALUATING ACTION TAKING Studying the consequences Selecting a course of of an action action
PAR in PracticeParticipatory: Disabled people are active stakeholders in the project.Action: The project is not just an academic thesis but a project which involves action to achieve tangible outcomes of emancipation.Research: The research is underpinned by other academic work in the field of disability studies (French and Swain, 2004), and is not “on” disabled people but “with” disabled people. The research concerns disabled people and promotes their empowerment.
How is PAR emancipatory?The final level or dimension of learning in PAR isempowerment. Empowerment is achieved whenparticipants discover they have the ability within tosolve their own problems.The PAR process is an open spiral process andrequires constant revisiting of previous levels withnewly generated knowledge from actions takenwhich then help to reshape the problem and resolveit at a deeper level.
How is PAR being used in an emancipatory way? Integrating participatory democratic process; disabled people as co-designers and co-producers throughout the process. Seeking social change on a micro as well as macro level. Practical action leading to changes for individuals and institutions. Encapsulating principles of participation and reflection, it is an iterative process seeking to evaluate and change.
How have the research questions been implemented in the research? Design Methodology
Ethical IssuesWORKING WITH “VULNERABLE ADULTS”
Insider Research“Ayesha Vernon states “First, that there is a politicalnature to all we do: our work, its process and productsare never neutral… Secondly the theme of liberationmust be the aim of all research on the oppressed”.(Ayesha Veron 1997:159).
Participants are required to: Participate in five to eight focus group meetings Provide individual feedback on the Individual Budgets process by keeping journals Be interviewed
Techniques used and why Qualitative Line-by-Line Analysis Focus Group minutes will undergo a line-by-line narrative analysis.
Techniques used and why Narrative Analysis Interviews using questions that have been co- designed with disabled people will be carried out to further understand and analyse the relevance of peer support in achieving power shifts.
Techniques used and why Qualitative Descriptive Analysis Participant journals covering eight stages of the Individual Budget application process: IB Training Day Self Assessment Questionnaire Resource Allocation Support Plan Support Plan Approval Ongoing Support to Assist Outcomes Goal Achievement Power Shift Reflection
The Adult Social Care Process PRE IB PROCESS: PRE-ORDAINED CARE COMMISSIONED MANAGER SERVICES:ASSESSMENT GATEKEEPER DAY CENTRE OF SERVICES SITTING AT HOME SPECIAL COLLEGE Carried out by Carried out by Carried out by WelfareWelfare Professional Welfare Professional Professional
The Adult Social Care Process THE IB PROCESS: Conducted by Carried out by social welfare SELF REVIEW OF Welfare professional.ASSESSMENT Professional SERVICES Service increased, decreased or lost RAS SUPPORT USER LED INDICATIVE PLANNING SERVICES BUDGET Paper-based form Budget allocation Client referred to completed by welfare direct payment professional and support service client