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Original Research Articles

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Authors:

Rosamond H. Madden ,

Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, AU
About Rosamond H.

Rosamond (Ros) Madden AM is an Honorary Senior Research Fellow associated with both the Centre for Disability Research and Policy, University of Sydney and the WHO Collaborating Centre on Health Workforce Development in Rehabilitation and Long Term Care at the University of Sydney. Ros has worked on disability information, statistics and research for some 25 years, both in Australia and internationally with WHO on disability and other classifications. She was a member of the Editorial Committee for the World Report on Disability (2007-2011). She has previous experience in NGOs and management positions in government agencies. Her current interests include disability measurement and policy, and research and monitoring for community-based rehabilitation (CBR) and other disability-inclusive development programmes. 

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Sue Lukersmith,

Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, AU
About Sue

Sue Lukersmith works in implementation and practice research. Some of her work as researcher and designer includes a person-centred planning approach for persons with high and complex needs (My Plan), person-centred health systems policy paper, monitoring & evaluation tool for CBR and DID (MM&M), rehabilitation guideline methodologist and developer (four guidelines), researcher and major contributor to two WHO world reports (World Report on Disability, International Perspectives on Spinal Cord Injury) and is currently involved with a number of international collaborations. She is completing her PhD at the University of Sydney on the development and impact of the dissemination of a taxonomy for community-based case management. Prior to research Sue worked in community rehabilitation as an occupational therapist and managing director.

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Michael J Millington,

Rehabilitation Counselling, University of Sydney, AU
About Michael J

Michael Millington, Ph.D. is a course director of Rehabilitation Counselling and an associate with both the Centre for Disability Research and Policy and the World Health Organization Collaborating Centre in Health Workforce Development in Rehabilitation and Long Term Care – within the University of Sydney Faculty of Health Sciences. His current research investigates community–based change for inclusive community programs.

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Charlotte Scarf,

Faculty of Health Sciences, University of Sydney, AU
About Charlotte

Charlotte Scarf is an independent writer, editor and researcher based in New York City, and an Honorary Research Fellow at the Centre for Disability Research and Policy at the University of Sydney. Her research is concerned with the politics of inclusion in knowledge-based disability and development initiatives. She is interested in questions about power, partnership, participation, communication and learning in North-South encounters in the context of development. She holds a PhD in International Studies, a Masters in Communication, and a Bachelor of Economics with Honours in Political Economy.

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Nicola Fortune,

National Centre for Classification in Health, University of Sydney, AU
About Nicola

Nicola Fortune works at the National Centre for Classification in Health, University of Sydney as part of the international team contributing to the development of the WHO’s International Classification of Health Interventions (ICHI). Previously, Nicola worked at the Australian Institute of Health and Welfare, where she was involved with the development and early implementation of the WHO’s International Classification of Functioning, Disability and Health (ICF) and co-authored several reports on disability and the need for disability services. Nicola has extensive experience in the development of classifications and data collections in the fields of disability and health. She is currently a PhD candidate at the University of Sydney. 

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Sally Hartley,

University of East Anglia, UK; Faculty of Health Sciences, University of Sydney, AU; London School of Hygiene and Tropical Medicine, GB
About Sally

Professor Hartley is currently an Emeritus Professor at University of East Anglia, UK, an Honorary Professor at the University of Sydney, Australia and also the London School of Hygiene and Tropical Medicine, UK, where she sits on the steering committee for the ‘International Centre for Evidence on Disability’. Her research has directly informed the development of participatory approaches to promote equal access for disabled people and their families in low and middle income nations. Prof Hartley was a Founder member and the first Executive Director, of the Pan African Community-Based Rehabilitation Network (Afri-CAN). Her impact is corroborated by her role as co-editor and major contributor to the WHO’s first World Report on Disability 2011.

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Gwynnyth Llewellyn

Faculty of Health Sciences, University of Sydney, AU
About Gwynnyth

Professor Gwynnyth Llewellyn is Director, Centre for Disability Research and Policy, University of Sydney and Head, WHO Collaborating Centre on Health Workforce Development in Rehabilitation and Long Term Care. Her work for WHO spans disability inclusive national strategies, health policies and practices; health-related rehabilitation guidelines and rehabilitation workforce; and the ICF and community based rehabilitation in the South East Asian region. 

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Abstract

Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community-based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts and structures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

Results: The MM&M is now freely available on-line at http://sydney.edu.au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data. To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team includingcollaboration with CBR stakeholders.

How to Cite: Madden, R.H., Lukersmith, S., Millington, M.J., Scarf, C., Fortune, N., Hartley, S. and Llewellyn, G., 2016. Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu. Disability, CBR & Inclusive Development, 26(4), pp.26–52. DOI: http://doi.org/10.5463/dcid.v26i4.472
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Published on 29 Feb 2016.

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