Systemic Practice and Action Research

, Volume 22, Issue 1, pp 31–44

Consumer Participation in Designing Community Based Consumer-Directed Disability Care: Lessons from a Participatory Action Research-Inspired Project

Original Paper

Abstract

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context.

Keywords

Participation Action research Consumer-directed care Community disability services Policy development 

References

  1. Administration on Ageing (2006) Choices for independence: modernizing the older Americans act, Department of Health and AgeingGoogle Scholar
  2. Blackman D (2007) Framework for individualized funding—draft for release. Saskatchewan Community Living Division, CanadaGoogle Scholar
  3. Bolton B, Brookings J (1996) Development of multifaceted definition of empowerment. Rehabil Couns Bull 39:256–264Google Scholar
  4. Braye S (2000) Participation and involvement in social care. In: Kemshall H, Littlechild R (eds) User involvement and participation in social care. Philadelphia Jessica Kingsley, LondonGoogle Scholar
  5. Bruyère SM (1993) Participatory action research: overview and implications for family members of persons with disabilities. J Vocat Rehabil 3(2):62–68Google Scholar
  6. Burns D (2007) Systemic action research. The Policy Press, LondonGoogle Scholar
  7. Commission for Social Care Inspection (2006). Real voices, real choices: the qualities people expect from care services (issue 2), EnglandGoogle Scholar
  8. Department of Health (2006) Our health, our care, our say: a new direction for community services (white paper). Older People and Disabilities Division, Department of Health, EnglandGoogle Scholar
  9. Emener WG (1991) An empowerment philosophy for rehabilitation in the 20th century. J Rehabil 57(4):7–12Google Scholar
  10. Kemshall H, Littlechild R (2000) User involvement and participation in social care. Philadelphia, Jessica Kingsley, LondonGoogle Scholar
  11. Kendrick M (1996) The natural authority of families. CRUcial Times, 6(July):6Google Scholar
  12. Kendrick M (2001) Family governed flexible family support: the Massachusetts small project example. Paper sponsored by Massachusetts families organizing for change and uniting families for change of Western MassachusettsGoogle Scholar
  13. Kosciulek JF (2000) Implications of consumer direction for disability policy development and rehabilitation service delivery. J Disabil Policy Stud 11(2):82–89CrossRefGoogle Scholar
  14. Laragy C (2004) Individualised funding/family governed project: evaluation of a pilot project conducted by Uniting Care Community Options. The University of Melbourne, MelbourneGoogle Scholar
  15. Laragy C (2008) Individualised lifestyles project: follow-up evaluation 2007. LaTrobe University/Uniting Care Community Options, MelbourneGoogle Scholar
  16. Lord J, Hutchinson P (2003) Individualized support and funding: building blocks for capacity building and inclusion. Disabil and Soc 18(1):71–86CrossRefGoogle Scholar
  17. Mahoney KJ, Desmond SM et al (2002) Consumer preferences for cash options versus traditional services: telephone survey results from New Jersey elders and adults. J Disabil Policy Stud 13(2):75–87CrossRefGoogle Scholar
  18. Moseley C (2001) Balancing safety and freedom in consumer-directed systems of support. Robert Wood Johnson Foundation/University of New Hampshire, New HampshireGoogle Scholar
  19. National Council on Disability (1996) Achieving independence. J Disabil Policy Stud 7(2):57–65CrossRefGoogle Scholar
  20. National Institute on Consumer Directed Long Term Services (1996) The benefits of consumer direction. Consumer Choice News 1(2):1–3Google Scholar
  21. Ottmann G, Street AF (2007) Ten lessons for developing a health information website. Aust Health Rev 31(4):523–526CrossRefGoogle Scholar
  22. Parent W (1993) Quality of life and consumer choice. In: Wehman P (ed) The ADA mandate for social change. Brookes, BaltimoreGoogle Scholar
  23. Phillips B, Schneider B (2004) Changing to consumer-directed care: the implementation of the cash and counseling demonstration in Florida. Mathematica Policy Research, PrincetonGoogle Scholar
  24. Phillips B, Mahoney K et al (2003) Lessons from the implementation of cash and counseling in Arkansas, Florida, and New Jersey. Mathematica Policy Research, PrincetonGoogle Scholar
  25. Shakespeare T (2006) Disability rights and wrongs. Routledge, LondonGoogle Scholar
  26. Simon-Rusinowitz L, Bochniak AM et al (2000) Implementation issues for consumer-directed programs: a survey of policy experts. Generations 24(1):34–40Google Scholar
  27. Simon-Rusinowitz L, Mahoney K et al (2005) The cash and counseling demonstration and evaluation: focus group inform design of a consumer directed cash option. Care Manage J 6(2):56–65CrossRefGoogle Scholar
  28. Turnbull HRI, Turnbull AP (1991) Participatory action research and public policy. Kansas University, Lawrence Beach Center on Families and Disability, LawrenceGoogle Scholar
  29. Ungerson C, Yeandle S (2007) Conclusion: dilemmas, contradictions and change. In: Ungerson C, Yeandle S (eds) Cash for care in developed welfare states. Palgrave Macmillan, Basingstoke, pp 187–207Google Scholar
  30. White GW, Suchowierska M et al (2004) Developing and systematically implementing participatory action research. Arch Phys Med Rehabil 85(2):3–12CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2008

Authors and Affiliations

  1. 1.School of NursingDeakin UniversityMelbourneAustralia
  2. 2.School of Social Work and Social PolicyLaTrobe UniversityMelbourneAustralia
  3. 3.Uniting Care Community Options, Individualised FundingMelbourneAustralia

Personalised recommendations