‘Voices for Change’: Participatory Action Research in
partnership with young adults with Down syndrome in New
University of Sydney
Professor Barbara Fawcett
Dr Margot Rawsthorne
(Faculty of Education and Social Work)
Background: ‘Circles of Support‟ also known as Circles of Friends or Teams of
Champions, are becoming an increasingly popular form of intervention to assist intellectually disabled people who need support in achieving their aims and goals. There is however a need for more academic research in this area.
Purpose of the study: The purpose of this research is to investigate what features of a circle of support model of intervention are effective in supporting young people with Down syndrome to identify and move towards their personal goals such as going out, forming relationships, promoting independent living skills, moving out of the parental home etc.
Objectives of the study: A coordinator and facilitators („Team Coaches‟) will work with
up to 16 young adults with Down syndrome and their families to identify personal goals and build circles of support. There are two cycles in the planned programme which are implemented over three years.
A research steering group (RSG) consisting of representatives from primary stakeholder groups will be active participants in guiding the action research process. These will include young people with Down syndrome, team coaches, parents and the project reference group. They will be responsible for identifying key areas for investigation, planning and overseeing the research.
Methodology: Participatory Action Research (PAR) methodology will be utilised to establish the field of study and generation of data. Kemmis and McTaggart (1988) suggest that the fundamental components of action research are (1) developing a plan for improvement (2) implementing the plan (3) observing and documenting the effects of the plan, and (4) reflecting on the effects of the plan for further planning and informed action. In PAR, researchers and participants plan both action and research jointly. Sources of data will include focus groups, semi-structured interviews, questionnaires and video evidence.
The credibility of the study methodology will be based on the tenets of Naturalistic Inquiry. The Grounded Theory method of data analysis will be utilised to determine the themes and codes which emerge from the data in the context of the research questions. Qualitative data analysis will be analysed with the support of NVIVO software.
Ethics: The research will be conducted within a carefully considered ethical framework, which takes into account issues potentially affecting intellectually disabled people. The
University of Sydney ethics committee approved the research in March 2007.
; To indicate both the strengths and weaknesses of the existing model of the circles
; To establish an enhanced model of circles of support in the context of the research;
; To make recommendations as to the effectiveness of the end model and to
produce training and guidance materials with the aim of providing further
assistance to other groups in developing their own projects.
This research explores the effectiveness of a „Circles of Support‟ model of intervention
designed to offer young adults with Down syndrome and their families support in developing the skills and community networks needed to assist them in achieving their life goals and presents a summary of early findings.
Although the concept of community capacity building via circles of support is growing in popularity world wide there is comparatively little academic research in the area. This project therefore is possibly the first of its kind, certainly in NSW, Australia. In a climate where disability rights are being promoted more and more vociferously it is still the case that relatively few established frameworks exist for intellectually disabled young people to receive tangible and holistic support in striving towards self-determination and full enjoyment of their citizenship rights. The innovative nature of this project presents an enormous learning opportunity for all involved and the application of rigorous research methodology will render its messages useful guidance for similar projects in the future. The use of a methodology which is at once participatory and orientated towards action will also give a clear voice to representatives of all groups involved in the research process; parents, friends, associates, project workers and most importantly the young adults with Down syndrome; a group of young people who traditionally have been disadvantaged and disempowered. It is imperative that they are closely involved with research which intimately concerns them.
RELEVANT BACKGROUND LITERATURE
The social model of disability was developed from a structural perspective and argues that disability is socially constructed. This model asserts that it is not impairment which disables a person but the social and economic exclusions which people with impairments face in societies. (UPIAS 1976, Finkelstein 1980, Oliver 1983, 1990, 1996).The social model of disability therefore more specifically defines impairment and disability as a twofold classification:
Impairment lacking part of or all of a limb, or having a defective limb, organism or
mechanism of the body;
Disability the disadvantage or restriction of activity cased by a contemporary
social organisation which takes little or no account or people who have physical
impairments and thus excludes them from the mainstream of activities. (UPIAS,
The social model explains disablement as the result of oppressive attitudes, behaviours and structural features of society which present barriers to full inclusion and participation for people with impairments. Over the past three decades, the social model has been developed and extended by academics and activists in the UK, Canada, Australia and the US and is now inclusive of people who are intellectually disabled (Tragaskis, 2002).
The social model seeks to overturn the “personal tragedy” (Oliver 1990) and
medicalised views of disability which are also socially constructed, arising historically from powerful medical, professional and political interests. Such individual models perpetuate the illusion that people with intellectual disabilities are almost by definition incompetent, vulnerable and inarticulate hence requiring care, protection or treatment (Richardson, 2000). This view has nurtured a culture of the “otherness” of intellectually
disabled people which has directly and indirectly facilitated their high degree of exclusion from mainstream schooling, employment, leisure and social relationships in modern Western European cultures.
How do intellectually disabled people define a good life for themselves? What arrangements and support do they see as important for them? In his review of relevant research, Richardson (2000) identifies five factors which intellectually disabled people report to be important to the quality of community life as follows;
; The importance of maintaining and developing friendships, relationships and
; The need for structured approaches to domestic activities;
; The need for information about personal medication, health, finances and
; The need for support for self-advocacy and autonomy; and
; The need for structured days.
The evidence for promoting a culture of community inclusion in enhancing the self determination and the overall quality of life of intellectually disabled people is now almost overwhelming. For example in the UK, the Department of Health, commissioned an analysis of community based residential services drawn from information collected from 500 participants residing in village communities, residential campuses and dispersed housing schemes (which include very small scale supported living arrangements). Participants living in supported living schemes experienced the greatest range of choice overall, greater choice with whom and where they lived and greater number of community based activities. Such freedom is not without its risks however; they were more likely to have their home vandalised and were “considered” to be at greater risk from people in the local community. (Emerson (2000) in R. Stancliffe & C. Lakin (2005)). A later study involving 169 intellectually disabled adults living in cluster housing and 741 intellectually disabled adults living in dispersed housing found the
results were consistent with previous research indicating that cluster housing arrangements offer, overall, a poorer quality of life when compared with dispersed housing (Emerson, 2004).
Findings such as these inform the value and policy framework of the project, training of the team coaches and the direction of work generally.
The origins of “Circles of Support” for disabled people
Planned Lifetime Advocacy Networks (PLAN) Canada is perhaps the most longstanding and successful working example of this approach to community capacity building (www.plan.ca) in the area of disability. PLAN was conceptualised by a group of relatives of disabled people in Vancouver, Canada around eighteen years ago. Over the years the organisation has developed and now offers families personal future planning, personal networks, advice and referral on government social services, service monitoring, advice on finance and assets management in relation to disabled relatives and also engages in systemic advocacy to help remove barriers which deter families from assisting their relatives in leading a secure and included lifestyle.
The PLAN model is unique in that it operates independently of state provision. Its framework has been adopted by the PIN (Planned Individual Networks) Project in Western Australia www.pin.org.au. This raises questions of whether Circles of Support could be successfully embedded in communities of disabled people in Australia.
THE RESEARCH QUESTION
In formulating my primary research question there were two important considerations; Firstly, once participants are fully recruited and a research steering group established, their perspectives and ideas will be crucial factors in decisions around what issues are relevant to the area of inquiry. Hence my co-researchers are key players in decisions about what questions the research seeks to answer.
Secondly, there is a dearth of academic research into the area of support networks for people with intellectual disabilities and hence highly focussed work would not be appropriate at this stage.
For both these reasons, my primary research question is anticipated to evolve as understandings emerge from the data, however an overarching question would probably be:
What aspects of a circle of support model of intervention assist young adults with Down syndrome in identifying and working to achieve their life goals?
The context of the study
The study takes place within the Up, Up and Away Project, a three year project funded by the Foundation for Young Australians ( FYA www.youngaustralians.org) and
implemented under the auspices of Down syndrome NSW (DSNSW
The project was conceived in 2005 when the Foundation for Young Australians (funded consultation with members of the „Up Club‟, a peer support and social group for young
adults (18-30yrs) with Down syndrome, which is funded and coordinated by Down syndrome NSW.
Young people were consulted about what they wanted out of life for the future. The messages were loud and clear- they clearly want access to the same opportunities and lifestyle choices as their non-disabled peers, they also want to make a meaningful contribution to community life. Their voices for change can be heard in this appeal which has become the main endeavour of the project:
[We want] “To do stuff in our life like everybody else, -like getting a job, moving
out, seeing friends, going out, having a relationship and helping others”
These young people also recognised of the need for moral and practical support in achieving their goals. The consultation process identified family members, friends, community members and agencies as being potentially key supports and hence the concept of the circle of support or (in the case of the Up, Up and Away Project) “Team of Champions” was adopted in the construction of the project model.
The Up, Up and Away Project model
The objectives underpinning the project, and stated in the initial project plan agreed between the FYA and DSNSW were:
1. To bring together a steering group made of young people with Down syndrome,
researchers and workers from the disability sector, family members and an
employed coordinator to action the initiative.
2. To give young people with Down syndrome a chance to think and talk about their
future and come up with personal goals.
3. To bring together a team of champions around each person involved, that can
support the person to reach their goals.
4. To support the teams through training, facilitation, ongoing contact and by
providing relevant information.
5. To ensure the goals identified by the young person with Down syndrome remain
the focus of the work of each team
6. To provide the opportunity for young people involved in the project to give and
receive support from each other through regular contact.
7. To provide the opportunity for team members (champions) to network and
problem solve together through regular contact.
8. For the program to achieve sustainability by the end of three years.
9. For information gathered through Teams to be passed on to peak bodies for use
in systemic advocacy.
I was inspired by both the progressive vision of the project and the enthusiasm and commitment of the young people I met in the early days of the project. When I suggested that we undertake academic research within the project around its effectiveness, there was broad support for the idea from the DSNSW committee and project reference group (one which is inclusive of intellectually disabled people and other experienced personnel in the field such as parents), provided that appropriate ethical requirements were met.
In reflecting on methodology it is extremely important to me as a non-disabled researcher that this research is of high quality and takes into consideration the standards and principles of research practice set by the disability movement. The following discussion critically appraises issues in this area.
The Emancipatory Disability Research (EDR) ideal
The social model of disability recognises that the impact of coming to terms with the consequences of impairment in a society that devalues disabled people and disabled lifestyles bring about personal pain and alienation. The tragedy is that our society and other societies continue to discriminate, exclude and oppress people (British Council of Disabled People, 2007). With this in mind the Joseph Rowntree Foundation funded a number of seminars in 1991 which set the agenda for emancipatory disability research. Following these discussions, the principles under which research with disabled people must occur, are as follows:
Unlike conventional approaches, (EDR) must fully involve disabled people throughout the research process. Non-disabled researchers may be involved but they must be accountable throughout the entire research process to a research advisory group or committee controlled and run by disabled people.
Research processes and practices must be open and explained to research participants and participating organisations. The findings and implications of research must be disseminated in appropriate formats to all relevant audiences, including disabled people. Empowerment
EDR must attempt to leave disabled people in a better position to confront the disabling barriers in their lives and must not exploit their experiences for career benefits to researchers. EDR should produce knowledge, understanding and information that will have some meaningful practical outcomes for disabled people in their struggles to overcome the barriers they face in disabling societies.
The social model of disability
EDR should adhere to the social model of disability. This reflects the growing demand by disabled people for a more holistic approach to the problems commonly associated with disability. EDR focuses on the economic, environmental and cultural barriers encountered by disabled people and their families.
The need for rigour
Researchers must ensure that their choice of research methodology and data collection strategies are logical, rigorous and open to public and academic scrutiny. The choice of methods
Whilst EDR has generally been associated with qualitative rather than quantitative data collection strategies; the choice of methods must adequately reflect the needs of the project concerned and the wishes of disabled people.
The Role of Experience
Discussions of disabled people‟s experiences, narratives and stories should be couched firmly within an environmental and cultural context in order to highlight the disabling consequences of societies increasingly organised around the needs of a mythical, affluent non-disabled majority.
The seven principles above are a valid tool to guide the choice of research method and guide my approach as a researcher and the conduct of this inquiry generally. They also constitute useful significant criteria for valid and trustworthy research in the field. Emancipatory disability research dictates no particular methodology hence I will argue that participatory action research (PAR) can fulfil all the criteria of EDR. Participatory action research will be utilised to establish the field of study and generate data. PAR is widely accepted by critical social workers as it underpins their commitment to social justice (Healy, 2002) and has long been recognised as a way of working with minority, marginalised and disadvantaged communities (Lewin, 1946). Its many exponents claim that it is educational and empowering (Fals-Borda and Rahman, 1991; Friere, 1972) and conveys a sense of respect to community members. Most importantly, PAR facilitates community changes desired by community members. The data collection methods are flexible and are those which are compatible with local, cultural, economic and political conditions. Arguably, if this is not the case, information may not be comprehensive and accurate (Mok and Hughes, 2004). PAR data collection methods include surveys, interviews, focus groups, audio-visual materials, oral histories, „photo
voice‟ and community forums.
In terms of PAR research within the Up, Up and Away project, the empowering nature of this form of research is commensurate with the underlying ethos of the project and what we want to achieve - that of individual empowerment throughout the research process and community capacity building. This research is expected to inform policy development in further cycles of action research.
PAR and the position of researcher
As I am the coordinator of the Up, Up and Away Project there are important ethical and „boundary‟ issues to consider. Although ethics approval has been granted and safeguards are in place, the research must remain „ethically sensitive‟ throughout as
there may well be unforeseeable issues arise in such a rich and dynamic research environment.
Barton (1996) argued that, despite its anti-oppressive intent the researcher must have the “humility „to identify the limitations of research which is inevitably partial so
continuing reflexivity on my part is very important.
In this participatory research, the „expert knowledge‟ that young people with Down
syndrome and their families have of their own needs, circumstances and life experiences is positioned beside the action researcher‟s knowledge of methods and processes. Part
of the PAR process is that relationships between co-researchers evolve as understandings are gained. The decision-making will be shared (though perhaps not always equally due to issues of professional responsibility, timescale and funding/resources). My aim will be to act as a medium to help clarify issues, plan what to do and then intervene in ways which suit the participants and their situation.
The study design
There are many approaches to participatory action research and no single definition can be adequate as the research is generally „context-specific‟ and unfolds in accordance
with the development of each project.
In terms of the practical steps, Kemmis and McTaggart (1988) suggest that the fundamental components of action research are (1) developing a plan for improvement (2) implementing the plan (3) observing and documenting the effects of the plan, and (4) reflecting on the effects of the plan for further planning and informed action.
One of the strengths of using PAR as a method is its flexibility in allowing projects to unfold in a manner and pace to suite the context of the research.
The study group
Participants/co-researchers have been recruited from all those subgroups involved with the Up, Up and Away Project and hence include:
; Young adults (aged between 18 and 25 years) with Down syndrome;
; Family members, e.g. parents, caregivers, siblings etc;
; Members of the „Team of Champions‟;
; Team Coaches/Facilitators;
; Members of the project reference group; also
; I also use my own reflections as project coordinator to generate data.
The research steering group (RSG)
When recruitment is completed research participants will be asked if they wish to become members of the research steering group (RSG) which will include members from all the above subgroups. I envisage that the RSG will be an open one in the sense that any research participant may join at any time. Support volunteers for the young people with Down syndrome will be appointed if the young people deem this appropriate. Early meetings of the RSG will:
; Discuss terms of reference for the group;
; Initiate discussion of the issues everyone sees as relevant to the Up, Up and Away
; Generate pertinent questions and hypotheses to be posed in the research relating
to all subgroups (hence the concept of the circle of support model is explored via
its „subgroups‟ and „sub concepts)‟;
; Ideas and opinions from RSG members will be sought as to how the data is
collected, interpreted and shared with research participants.
; Potentially generate data itself -to inform analysis of the research process.
It is envisaged that the research steering group meetings will be held every three months from September 2007 onwards and data collected in the intervening period will be analysed and fed back to the RSG for comment and decision-making at each subsequent meeting.
The RSG will define research questions and hypotheses and will also help define and plan the data collection methods. Possible methods are semi-structured interviews, focus groups and video-taping. As the Up, Up and Away Project has received grant funding to make a DVD, there will be opportunities for interviews and group meetings to be filmed. Provided the appropriate consents are obtained, it is possible that some of these filming of project activity and data collection can be combined.
When data is collected Nvivo software will be used to assist with data analysis.
I have explicated my own theoretical „lens‟ as a critical social worker with a broadly
structuralist perspective. This standpoint is largely commensurate with the social model of disability as well as emancipatory and participatory research methodologies. This perspective has explicitly propelled me to this field of research and directs the data „harvest‟. However, as to the analysis of the nature of that „harvest‟ (and here I will drop
the metaphor!), I am most interested in the theory which emerges from the data
For this very important reason, I intend to use grounded theory (Glaser and Strauss, 1967) as a means of analysing the data. Although grounded theory‟s technical
explications are sometimes unwelcome reminders of an era of scientism (Searle, 1999), the rigorous nature of this approach will extend the research method trustworthiness. This research primarily seeks to influence policy and practice in the field and grounded theory is widely recognised and accepted in the field of health, education and social work.
Through this form of analysis it is also anticipated that the voices of the participants will be represented more earnestly in the emergent theory rather than the extrapolations of myself as writer.
Criticism of grounded theory is made by postmodernists who object to the narrow, analytic strategy imposed by heavy reliance on coding data as a first step and the (often explicit) links with use of computer software (Coffey et al 1996). There is a concern that „standardized and mechanistic‟ procedures may be applied. Postmodernist approaches
such as discourse analysis (Potter and Wetherill, 1987) or analysis of narrative (e.g. Reissman, 1993) depend more on the discussion of the various subjective meanings of
particular words or on overall perspective of whole structures within the data which can be fragmented or taken out of context through coding. These criticisms need to be considered and the opinions of my co-researchers sought when reviewing the outcome of data analysis which will be fed back to the RSG as the project progresses.
Trustworthiness of the study
Whichever methodological processes are used there is always the issue of whether the research can be trusted. Lincoln and Guba (1985: 290) suggest that the central question of trust in research is “How can an inquirer persuade his or her audiences (including self) the findings of an inquiry are worth paying attention to, worth taking account of?” Lincoln
and Guba‟s criteria, derived from the positivist paradigm, however could prove constraining and over prescriptive. Their schema been considered sometimes to be at odds with action research McTaggart (1998) , advocates that action research criteria of validity are paradigm specific and should meet criteria of “defensibility, educative value, political efficacy and moral appropriateness”.
I was appointed as coordinator in February 2006. As my role has developed into action researcher, a number of strategies have been employed to both realise and refine the initial project objectives taking account of the theoretical framework.
A reference group made up of young people with Down syndrome, researchers and workers from the disability sector, family members was established in 2005. The initial monthly reference group meetings provide enormous support to the project and have helped to refine the framework for the project. Out of 13 applicants, 8 participants (young adults with Down syndrome), three young men and 5 young women were selected and 4 team coaches appointed in May 2006.
A young adult with Down syndrome was appointed in July 2006 as ‟Team Voice‟ to represent the views of the project participants on the project reference group. This has proved enormously successful and has been developed (far beyond the original job description) into a valuable and key role by the young man in question. I have produced a manual/toolkit for use by team coaches influenced by person centred planning concepts (Sanderson et al, 2000), which will be developed throughout the course of the research.
Project induction and training occurred for Team Coaches (facilitators) in June 2006 and September 2006. Coaches were matched with participants in July 2006 when work began. Team Coaches debrief monthly with the coordinator and meet as a group with the coordinator and Team Voice monthly. Early work with participants completed by team coaches consisted of befriending, life „mapping‟ work and goal setting using person
centred planning strategies to enable team coaches to get a clear idea of where the young adults themselves were at, what they would like to do with their lives and raise self awareness amongst participants. This also gave families the opportunity to get to know team coaches and think about the group aims. Monthly participants meetings have been built into the project to facilitate sharing of experiences and ideas. Circles of