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Voices for Change: Participatory Action Research in partnership with young adults with Down syndrome in NSW Miriam Stevenson

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Title: Voices for Change: Participatory Action Research in partnership with young adults with Down syndrome in NSW Miriam Stevenson


1
Voices for Change Participatory Action Research
in partnership with young adults with Down
syndrome in NSWMiriam Stevenson
2
Aims of presentation
  • Give primacy to the voices of participants
  • Citizenship and participation
  • The Up, Up and Away project model
  • Methodological approach to the study

3
Social Model of disability and Citizenship
  • We want to do stuff in our life like everyone
    else like getting a job, moving out, seeing
    friends, going out, having a relationship and
    helping others (project participants, 2005)
  • Citizenship means
  • Full membership of the community with all its
    rights and responsibilities
  • TH Marshall (1981)

4
The social model of disability
  • Developed from a structural perspective
  • Argues that disability is socially constructed
  • Not the impairment which disables a person but
    the social and economic exclusions which people
    with impairments face in societies
  • Oppressive attitudes, behaviours and structures
    in society constitute barriers to full inclusion
    and hence full citizenship rights and
    responsibilities
  • (UPIAS 1976,Finkelstein 1980, Oliver
    1983,1990,1996)

5
Circles of support
  • Planned Lifetime Advocacy Networks (PLAN)
    Conceived 18 years ago in Toronto, Canada. Builds
    capacity into communities and helps to remove
    social and political barriers to inclusion
  • Operates independently of state provision
  • Framework adopted by the PIN Project in WA
  • Uses Person Centred Planning techniques to
    identify the disablerd persons dreams and goals

6
The Up, Up and Away project model
  • A coordinator employs and supports trained
    facilitators (Team Coaches) to work with young
    adults with Down syndrome and their families to
    identify their life goals and help them to build
    Teams of Champions who help them to work
    towards/realise these goals. A team voice is
    employed to represent the views of the
    participants on the project reference group.

7
The science bit!! Emancipatory Disability
Research (EDR)
  • Rowntree seminars 1991 asserted-
  • Control
  • Accountability
  • Empowerment
  • Adherence to social model
  • The need for rigour
  • The choice of methods
  • The role of experience
  • (BCDP website 2007)

8
Participatory Action Research (PAR)
  • Underpins a commitment to social justice
  • Educational, empowering and interesting for
    participants
  • Demands inclusion of the people/communities it
    researches
  • Facilitates changes desired by those communities
  • Data collection methods are flexible

9
PAR and the researcher
  • Coordinator and researcher- boundary issues to
    consider. Remain ethically sensitive
  • Research is inevitably partial so continued
    reflexivity required
  • Acknowledge expertise of young people with Down
    syndrome and families is positioned beside the
    researchers knowledge of methods and processes

10
The action research cycle
  • Develop plan for improvement
  • Implement plan
  • Observe and document effects of plan
  • Reflect on the effects of the plan for further
    planning and informed action
  • ( Kemmis and McTaggart, 1988)

11
Sampling and research questions
  • Purposive sampling
  • Include all key stakeholder groups
  • Form Research Steering Group (RSG)
  • Consult all groups on the issues which are
    important to them in relation to the project
    model
  • From this formulate research questions

12
Data collection
  • RSG meet regularly and advise on appropriate
    data collection methods
  • Semi-structured interviews
  • Focus groups
  • Video tapes
  • Reflective log of the coordinator

13
Data Analysis
  • Nvivo software used to assist data analysis
  • Use of grounded theory to analyse data
  • - Earnest representation of participant voices
  • Widely accepted
  • Results of data analysis taken back to RSG for
    comment and planning

14
Criteria for trustworthiness of our study
  • Lincoln and Guba (1985) criteria derived from
    positivist paradigm
  • McTaggart (1998) criteria of validity in action
    research are paradigm specific

15
Early findings and reflections
  • Life goals of the participants are highly
    compatible with life goals of non-disabled people
  • Positive engagement of Team Coaches with parents
    and significant support people are crucial to
    establishment of model credibility
  • Team Coach gives emotional and moral support to
    family members, not simply practical support
  • Not all people need a Circle of Support

16
  • Development of Team Voice role has been
    fascinating
  • Coaches have the capacity to conduct some direct/
    individual life skills work with participants
    which supports progress
  • Development of good self-travel skills appears to
    be a key factor in being and feeling more
    independent
  • Project participants and Team Coaches have
    embraced and owned the project with energy,
    enthusiasm and loyalty.

17
Project achievements
  • All our 2006 participants have now achieved at
    least some of their goals.
  • The project now has 9 staff and 14 participants
  • The FYA have funded us to make a DVD and write a
    manual about the project. Filming has started!
  • Young people have presented the project to
    students at the University of Sydney and the
    Australian Catholic University
  • We have a donation of 10,000 to create a
    training program for young people with Down
    syndrome to become educators so they can go out
    and teach other people about intellectual
    disability.

18
More information
  • Miriam Stevenson upandaway_at_dsansw.org.au
  • mste8601_at_usyd.edu.au
  • James Vantol
  • teamvoice_at_dsansw.org.au
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