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Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

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

Madden, Rosamond H
et al
2016

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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 andstructures; 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 thttp://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 including collaboration with CBR stakeholders.

National institutional frameworks and human rights of persons with disabilities

DEPARTMENT FOR ECONOMIC AND SOCIAL AFFAIRS (DESA), UNITED NATIONS
August 2006

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This resource compares national disability institutions and frameworks in Australia, Sweden, India, Guatemala and the UK. It aims to: identify the core institutions concerned with disability rights and describe how they were established; review the legislative framework; and examine the organisational structure, mandates and activities of the states’ monitoring institution/s

Identifying disability issues related to poverty reduction : Cambodia country study

FOUNDATION FOR INTERNATIONAL TRAINING
2005

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This country report describes the situation of disabled people in Cambodia. It gives an overview about the country, reviews the legislation and describes disability organisations and development agencies. In addition to this the report analyses the connections between disability and poverty by reviewing the current programmes and showing the gaps. The recommendations of the report urge to pay special attention to activities in the fields of inclusion, participation, access and quality

Biwako millennium framework for action towards an inclusive, barrier-free and rights-based society for persons with disabilities in Asia and the Pacific

UNITED NATIONS ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC (UNESCAP)
January 2003

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Provides information on the Biwako Framework that was adopted in 2002. The document sets out a draft regional framework for action that provides regional policy recommendations for action by governments in the region and concerned stakeholders to achieve an inclusive, barrier-free and rights-based society for disabled people. The regional framework for action explicitly incorporates the millennium development goals and their relevant targets to ensure that concerns relating to disabled people become an integral part of efforts to achieve the goals

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