Task Force on
Building Disability Community Organizations’
Policy Research and Knowledge Mobilization Capacity
Co-sponsored by the
The Canadian Association for Community Living and
The Council of Canadians with Disabilities
Terms of Reference – Draft 7
February 2006
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Introduction
The Canadian Association for Community Living (CACL) and the Council of Canadians with
Disabilities (CCD) are co-sponsoring a review to consider options for a community-based
capacity for disability-related policy research and knowledge mobilization. The Canadian
Association of Independent Living Centres and the Neil Squire Society are collaborating in
this initiative.
The purpose is to develop options that will best enable disability community organizations to
access policy research findings, and mobilize and share knowledge across society, in ways
that will advance full citizenship, inclusion and human rights for people with disabilities. A
Task Force, chaired by Dr. Michael Prince of the University of Victoria, with representation
from the disability community, academic community, and broader social development sector,
leads the review. The Task Force is supported through a facilitation team from the Centre for
Research and Education in Human Services. The team will collect background information,
facilitate consultations, carry out interviews and draft reports.
The review will be completed by end of December 2006. The process will engage national
and provincial/territorial disability organizations, policy experts in government and nongovernmental research institutes, university-based researchers and representatives of
disability studies programmes.
This document provides the broad Terms of Reference for the Task Force and the review.
A list of Task Force Members is appended.
Key Terms
For the purposes of this initiative we define our key terms as follows:
Disability Community Organizations - local, provincial/territorial and national organizations
whose primary mission is to advance the full citizenship, inclusion and human rights of people
with disabilities.
Disability-Related Policy – statutory and case law, and policies in the public, private, and
NGO sectors which shape the social, economic, cultural and political status of people with
disabilities.
Disability-Related Policy Research – the process of framing research questions and
gathering and analysing information to produce useable knowledge about the following:
 the social, economic, cultural, and political status of people with disabilities and their
families;
 how public, private, and NGO sector policies contribute to a de-valued status and
exclusion of people with disabilities;
 from the perspective of advancing the full citizenship, inclusion, and human rights of
people with disabilities, issues with
o statutory and case law, and public, private and NGO sector policies and
o particular programs, funding arrangements, practices, service delivery
structures and regulations which are based on laws and policies;
 how laws and policies, and the various programs and arrangements based on them,
can be designed to better advance the full citizenship, inclusion and human rights of
people with disabilities.
Policy Dialogue and Development – the process by which disability community
organizations engage with other stakeholders to develop and implement policies, programs,
and practices that advance the full citizenship, inclusion and human rights of people with
disabilities. Stakeholders include governments, the broad disability community, other social
movements, and the wide range of social, education and economic sectors that affect the
status of people with disabilities (health, social services, education, training, employment,
transportation, cultural industries, etc.)
Knowledge Mobilization – the process of moving knowledge into policy dialogue and
development in ways that will advance the full citizenship, inclusion and human rights of
people with disabilities. By knowledge we mean any or all of:
 the accumulated knowledge and experience of people with disabilities, their families,
and other stakeholders concerned with the full citizenship, inclusion, and human rights
of people with disabilities;
 findings from specific research studies;
 the accumulated knowledge and experience of researchers.1
Guiding Principles
The review will be guided by the following principles:
 We want to ensure a disability-related policy research and knowledge mobilization
capacity that responds to the needs of the broad disability community, while remaining
rooted in a commitment to confronting the exclusion faced by people with intellectual
disabilities as part of a larger disability community.
 We need a policy research and knowledge mobilization capacity that strives to be fully
inclusive. Diverse realities, issues, and voices of people with disabilities both in terms
of types of disability (mobility/agility, sensory, intellectual, psychiatric, learning) and
other factors (ethno-cultural-racial differences, gender, class, sexual orientation, etc.)
should be represented in the governance and implementation of a research and
knowledge mobilization capacity.
 We need a policy research and knowledge mobilization capacity that is considered
credible by people with disabilities, their allies, funders and policy makers.
Purpose
The overall purpose of the review is to scope out the best option for ‘Building Disability
Community Organizations’ Policy Research and Knowledge Mobilization Capacity.’ That
option must provide effective answers to two key questions:
• How do we build the capacity of disability community organizations to develop policy
research, mobilize knowledge sharing, and engage in policy dialogue that advances
their mission (to secure the full citizenship, inclusion and human rights of people with
disabilities)?
• What is the best way of working with academic researchers, institutions of learning and
other partners in doing so?2
1
Our definition draws upon, and adapts, the definition of knowledge and knowledge mobilization provided by the
Social Sciences and Humanities Research Council for its “Knowledge Impact in Society” Initiative. See
http://www.sshrc.ca/web/apply/program_descriptions/knowledge_impact_e.asp
2 At its first meeting in September 2005, the Task Force provided advice in framing these questions. See
“Overview of Meeting of Task Force to Review Disability Community Research Needs and Capacity,” September
19, 2005. The name of the Task Force has been revised to reflect the focus of these guiding questions.
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Background
Community-based research and information management has long been an important aspect
of the disability community’s capacity-building efforts. Undertaking research-related projects
and developing community-based information networks have been core capacity-building
functions of national disability organizations. Access to information on disability-related
needs, options, gaps in services, violations of human rights, etc. is critical to the community’s
capacity to engage effectively in policy dialogue and development with governments, social
and economic sectors. With governments at all levels looking for input and engagement from
the disability and other marginalized communities as a foundation for a social development
strategy, the disability community must be equipped to participate in an informed way. As
well, the community has demonstrated its unique role, through participatory research and
other innovative community-based research and information-gathering processes, to bring to
consultative processes experiential knowledge of Canadians with disabilities and their
families. Their knowledge about values, aspirations, needs and options is essential if we are
to establish more responsive policies and practices to meet disability-related needs, and to
build sustainable community capacity to address them.
The disability community’s research and information function has been carried out in a
number of ways in the past – through ‘in-house’ research by national and provincial/territorial
disability organizations and by consultants they contract; sponsoring of community-based
disability research groups like The Roeher Institute; collaboration with public interest research
groups like the Canadian Centre on Disability Studies, the Caledon Institute and the
Canadian Council on Social Development; and increasingly through community-university
collaborations.
This review is being launched at a time when the community capacity for disability-related
research is undergoing significant change:
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Human Resources and Social Development Canada’s (HRSDC’s) Knowledge
Development and Research Directorate is developing a knowledge strategy to identify
and address gaps in disability-related information available to governments and the
Canadian public. When developed, this strategy is meant to guide HRSDC’s
investment in research. While some representatives of the community have been
consulted on this strategy, the role of the community in developing and carrying out
this strategy remains unclear. In any case, the community itself needs to consider
what its own knowledge development needs are, in addition to how to relate to and
with a strategy formulated by the Government of Canada.
The Social Sciences and Humanities Research Council (SSHRC) is increasingly
investing in university-based disability-related research, and a growing number of
university-based academics, undergraduate, and graduate programmes are
conducting research and knowledge management in the area of disability studies. For
the most part, university-based academics are committed to engaging the community
in research projects. However, their growing research capacity shifts the locus of
control and direction of disability-related social research from community organizations
like CCD, CACL, and The Roeher Institute to the academic sector.
The Roeher Institute, a community-based research institute sponsored by CACL for
the past 35 years to provide research, training and information services to the disability
community, at one time had numerous staff, a large library, a very active publishing
record, and nationally and world-wide recognized research capacity. Because of lack
of external funding it has been reduced in capacity in recent years to one full-time
research consultant.
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The other main community-based disability research centre in the past few years has
been the Canadian Centre for Disability Studies. However, changes in leadership and
resource limitations over the past few years have required that the organization revisit
its mandate and build stronger linkage to the disability community.
The disability community has been working with the academic community in
developing a framework for a ‘disability policy’ research strategy that will be led by a
joint community-academic governance structure. This project is not yet operational.
While the initiative has promise, the implications of this approach to managing policy
research and knowledge mobilization are still to be worked out.
Over the past dozen years, the Canadian Council on Social Development (CCSD) has
built a research capacity in disability through funding from Social Development
Canada. It is important to consider how best to link with the CCSD and the role it can
play in a coordinated community-based research capacity.
Provincial/territorial disability organizations are increasingly undertaking research and
information development in a number of sectors – employment, service system
transformation, early learning and child care, inclusive education, etc. The capacity of
the disability community to network its own locally-developed research and information
requires significant development so that policy research and options does not remain
localized, but can be shared more broadly.
In the past five years, disability studies programmes have been developing in a
number of universities, and programmes are increasingly linking through a national
network. The emergence of disability studies programmes is a welcome development,
in part because they help create a needed profile on disability in universities and help
expand research and knowledge management capacity. However, the relationship of
these programmes to the disability community at a national level needs further
clarification. As well, how these programmes can help ‘mainstream’ disability and
leverage research and knowledge mobilization capacity across academic disciplines
and departments is an important question for the community.
A number of disability organizations have been losing organizational capacity in recent
years because of a shifting funding environment. As research funding grows for
university-based disability-related research, and increasingly weakened community
organizations are called upon to support these research efforts, questions are being
raised about how best to support the community’s engagement in disability-related
research.
Research funding from private foundations, Worker Compensation Boards, and other
potential funders has not been effectively tapped.
Objectives
The objectives of the review are to:
1. Develop a clear understanding of current disability-related policy research and
knowledge mobilization capacity across government, NGOs, and universities; the role
of disability community organizations in these efforts; and how disability community
organizations currently use this capacity in policy dialogue and development efforts.
2. Clarify expectations and hopes of disability community organizations for a policy
research and knowledge mobilization capacity that would assist organizations in policy
dialogue and development.
3. Identify strengths and weaknesses with current policy research and knowledge
mobilization capacity from the perspective disability community organizations, and their
efforts to engage in policy dialogue and development.
4. Identify options for a sustainable disability-related policy research and knowledge
mobilization capacity that meets disability community organizations’ hopes and
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expectations, is considered credible by key stakeholders, and is linked nationally and
provincially/territorially.
Stages of the Review
The review will be organized into five broad stages.
Stage
Step 1 - Design Stage
- Establish Task Force and Terms of
Reference
- Roundtable discussion with disability
organizations and experts to clarify
research questions and issues to be
addressed.
- detail a research design work plan in
consultation with the Task Force
- prepare background scan on
o why disability policy research and
knowledge mobilization is key to
disability community organization
goals
o what we know about disability
community org. policy research and
knowledge mobilization needs and
current capacity
o key issues in developing capacity
Step 2 – Survey and Interviews
- web-based survey and key informant
interviews with disability community
representatives, academics, researchers
on research and information needs,
capacities, trends, issues to address
Time-Frame
Dec-Jan -06
Feb 06
Jan – Mar 06
March-Apr
06
Mar 06
Step 3 – Regional Consultations
- Consult with a regional representation of
April-May 06
people with disabilities and families
researchers, policy makers, and partners –
including presentation of findings from
survey and informants by conference call
- Atlantic, Quebec, Ontario, West, BC and
North
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Stage
Step 4 – Development of Options
- Face-to-face meeting with Task Force to
review findings to date and to scope out
options and recommendations
- consideration of options by disability
community organizations
- identification of option to be further
developed
- preparation of interim report
Time-Frame
Step 5 – Development of Recommended Option
- review with selected national disability
organizations, research groups, and ODI
and HRSDC officials what conditions
needs to be in place to implement
recommended option
- outline organizational and funding
proposal to implement
- identify structure, networks, management
and accountability for research capacity
function
- prepare feasibility and explore funding
options
- develop strategy for securing needed
resources
- prepare and submit final report
Sept – Dec
06
June 06
July-Sept 06
Sept 06
Resourcing and Management Structure
Resources for the review are provided through a Contribution Agreement to the Canadian
Association for Community Living from the Social Development Partnerships ProgramDisability component of Social Development Canada (now Human Resources and Social
Development Canada). Project Director, for the purposes of managing this Contribution
Agreement, is Michael Bach, Executive Vice-President, CACL.
The review is to be managed through the following roles and responsibilities:
Task Force Chair:
 Michael Prince
 Provides overall guidance to the Task Force and Management Team
 Chairs all Task Force Meetings
 Assists in presenting findings to funders and other stakeholders
Task Force Members:
 The primary role of Task Force members is to develop options and build consensus
about the outlines of a sustainable community-based policy research and
knowledge-mobilization capacity. In the course of playing this role, members will:
o Provide overall direction to the review
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o Approve research design
o Provide input and feedback on draft reports and approves final report
o Based on the review findings, scope out options, and recommend priority
option for further development
o Communicate through face-to-face meetings, conference calls and email
Project Director:
 Michael Bach, CACL
 Manages and reports on Contribution Agreement with HRSDC
 Links with Task Force Chair and Facilitation and Research Team to ensure
workplan is in place and budgeted and agreed activities are carried out, and that
project deliverables are met
 Responsible for coordinating Task Force communications and meetings
Facilitation and Research Team:
A project team from The Centre for Research and Education in Human Services 3 will facilitate
the review: Joanna Ochocka, Executive Director; Jason Newberry, Centre Researcher; and
Julie Wise, Centre Researcher. Jason Newberry will be the lead contact for the team for the
purposes of this review.
The roles and responsibilities of this team are:
 To draft and update the workplan
 Design research and conduct research for the project as outlined in the 5 Steps above
 Facilitate Task Force face-to-face meetings
 Prepare reports from Task Force meetings
 Prepare project reports
Management Team:
 Includes: Michael Prince (Task Force Chair); Michael Bach (Project Director); and
Facilitation and Research Team
 Monthly conference calls to coordinate work planning
 Finalize materials for circulation to Task Force Members and Advisors
3
Located in Kitchener, Ontario, the Centre collaborates with governments, social service organizations,
individual consumers, grassroots groups and other members of the community to support innovations in human
service policy and practice. A board of directors, which includes academics, service providers, and consumers of
social services oversee the Centre. Additional information about the Centre is available at www.crehs.on.ca.
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Task Force on
Building Disability Community Organizations’
Policy Research and Knowledge Mobilization Capacity
Chair:
Michael Prince, University of Victoria (Task Force Chair)
Disability Community Organizations:
Council of Canadians with Disabilities (2 representatives)
Canadian Association for Community Living (2 representatives)
Canadian Association of Independent Living Centres
Neil Squire Foundation
People First of Canada
Academic/Research Community
Cam Crawford, The Roeher Institute
Olga Krassroukova-Enns, Canadian Centre for Disability Studies
Judith Sandys, Ryerson University
Katherine Scott, Canadian Council on Social Development
Tim Stainton, University of British Columbia
Deborah Stienstra, University of Manitoba
Vianne Timmins, University of PEI
Representative from Quebec – to be determined
Task Force Facilitation and Research:
Centre for Research and Education in Human Services
Joanna Ochocka, Executive Director
Jason Newberry, Centre Researcher
Julie Wise, Centre Researcher
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