Full Report - Canadian Foundation for Healthcare Improvement (CFHI)

Transcription

A Canadian Institute on the Disability Process
Karen A. Blackford, RN PhD
Canadian Centre on Disability Studies (CCDS)
Patrick Fougeyrollas, PhD
International Network on Disability Creation Process (INDCP)
Michael Mahon, PhD
Health, Leisure and Human Performance Research Institute
University of Manitoba
Submission for:
Canadian Institute of Health Research Design Grant Program
Social Sciences and Humanities Research Council of Canada
Canada Health Services Research Foundation
October 1, 1999
INVESTIGATORS AND CO-INVESTIGATORS
Investigator: Patrick Fougeyrollas
Co-investigators:
Alfred Neufedt
Alice Eriks-Brophy
Astrid Vercaingen-Menard
Chantal Laroche
Charles Pare
Clermont Dionne
Colette Dubuisson
Jacques Barrette
Joachim Reinwein
Karen Blackford
Linda Garcia
Line Robichaud
Luc Noreau
Lucie Brosseau
Marie Gervais
Meredith Wright
Michel Loranger
Michel Pepin
Myreille St-Onge
Olga Krassioukova
Rachel Thibeault
Rose Martini
Serge Dumont
Investigators: Mike Mahon
Karen Blackford
Co-Investigators:
Henry Enns
Aldred Neufeldt
Joseph Kaufort
Kari Krogh
Mary Tremblay
Olga Krassioukova
Patrick Fougeyrollas
Susan Boutilier
Universite Laval
The University of Calgary
University of Ottawa
Universite du Quebec a Montreal
Unknown/Other
Universite Laval
Universite Laval
Universite Laval
Universite Laval
The Ottawa Civic Hospital
Universite Laval
Universite Laval
Universite Laval
Canadian Centre on Disability Studies
Universite Laval
The University of Calgary
The University of Manitoba
University of Victoria
McMaster University
Universite Laval
Nova Scotia Community College
TABLE OF CONTENTS
The Issue
Demographic Realities
Presentation for the Canadian Centre on Disability Studies
Doubly Marginalized Groups
The Social Model of Disability
Participatory Action Research
Summary
Methodology
The Framework
Disability Creation Process Figure
Axes of Research
A.
B.
C.
D.
Prevention of the causes of significant and long-term impairments and disabilities
among the population
The development of knowledge on significant impairments and disabilities as
consequences of diseases, trauma and other disruptions in the development or integrity
of a person as well as methods of intervention and compensation in adaptation and
rehabilitation
The study of personal and environmental determinants of social participation defined
as the result of an interactive process
The organization and evaluation of services, programs and policies related to health
services, rehabilitation and multisectoral support to social integration or inclusion of
people with organic or functional differences
The Organizational Structure of the Institute
Governance of the Institute
A.
B.
C.
Planning of research
Grant Programs
Assessment
Representatives of the Institute on other Cross-Cutting Institutes Boards
Review Process
A.
B.
Relevancy Committee
Scientific Committee
Accountability
Transfer of Knowledge and Appropriation for Improving Health Services and Social Change
Conclusion
Bibliography
Letters of Support
A CANADIAN RESEARCH INSTITUTE ON THE DISABILITY PROCESS
The Canadian Institutes for Health Research have created a unique opportunity for a robust interdisciplinary
examination of the disability process. This paper presents the rational for a Canadian Health Research
Institute on the Disability Process. Proposed is a national research alliance that builds on a strong
foundation of existing networks of researchers, people with disabilities, service providers and policy makers.
This Institute would be unique in the world because of its broad focus on issues ranging from social
participation and health to prevention, treatment and health services and the disability process. The
credibility of the proposed Institute can be found in the already existing vast partner network presented in
this paper.
The mission of the Institute is to address the breadth of the disability process. This includes: the dimensions
of risk factors for disease, trauma and other disruptions to the integrity of a person that have long-term
consequences; the continuum of health, adaptation rehabilitation and social integration support services for
people with significant and persistent impairments and disabilities; studies related to the cultural and sociopolitical phenomenon of disability as a social construction; and finally, all of the physical and social factors
that ensure the exercise of rights and equal opportunities of people with disabilities, such as social
measures and policies. The Canadian Institute of Research on the Disability Process concerns all types of
impairments (motor, auditory, visual, language and speech, intellectual, psychological) and all age groups.
Within a multi-disciplinary perspective, the organization of the Institute aims to create bridges and
collaborations between the diverse aspects of fundamental, clinical, applied and evaluative research on
both bio-medical and social facets. The guiding principle for this Institute will be the development of
research within a cultural and socio-political perspective, based upon the viewpoints of the people
concerned (people with disabilities, families, researchers, service-providers, policy-makers).
The Issue
Disability issues and the interdisciplinary field of Disability Studies have long been marginalized in health
related research funding initiatives, and other areas such as the social sciences and humanities. With the
exception of the Human Resource Development Canada (HRDC) – Social Sciences and Humanities
Research Council (SSHRC) Strategic Grants on Disability, there has been no significant federal research
funding targeted to disability related issues. This marginalization is exemplary of a much larger problem in
Canada, which is the continuing systemic and interpersonal exclusion of people with disabilities. Disability
oppression is an over-arching term which accurately describes the barriers experienced by people with
disabilities who are stigmatized and historically disadvantaged in the economy, the state and civil society
(Oliver 1990; Abberley 1987).
Demographic Realities
This Institute is based on the necessity to reconsider the disability process in light of a major societal priority
within the field of health, i.e. an increase in the prevalence of chronicity and long-term functional limitations
and aging among the population. In 1980, the World Health Organization estimated that “approximately
10% of the world’s population at any given time is physically or mentally impaired”(Scheer 1988, 24). The
1991 Statistics Canada post-censal survey on persons with disabilities (Health and Activity Limitation Survey
(HALS)) revealed that 4.3 million people in Canada live with a disability (16% of the Canadian population).
The Canadian Mental Health Association reports that one in three people will have mental illness in their
lifetime. In fact, disability is a reality concerning the vast majority of the population at one time or another in
their lives. Considering recent advances in medical science, which have allowed more people with
disabilities to survive birth and childhood, and the aging of our population (both generally and among
people with disabilities), it is clear that this percentage will continue to rise into the new millennium.
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The field of Disability Studies is important because of the number of persons involved. Everyone, at some
point, becomes disabled. The large number of Canadians with disabilities and the vast amount of dollars
spent on such areas as rehabilitation, support services and income support make it an important area for
research. Data from the HALS survey indicates that Canadians spend 2.5 billion dollars on disability
through the Canada Pension Plan. Canadians are becoming more aware of the implications of our aging
population. However, little research has been conducted regarding people with disabilities as they move
into later life (Mahon & Goatcher, In Press). Research must be conducted to determine the changing
needs of seniors with disabilities, the barriers facing aging people with disabilities, the participation of major
stakeholders in finding solutions, and the issues around coping with stereotypes of aging and disability
(Canada: National Advisory Council on Aging). Many aging people with disabilities must deal with
secondary symptoms of their disability as they age, and “the onset of secondary disabilities may violate
strongly held beliefs regarding the ‘normal’structure of the life course”(Campbell, 1996). Research on
aging with a disability could contribute to a broader interest in assistive technology, personal assistant
services and health and long-term care issues (Campbell 1996). The oppression of people with disabilities
has led to their exclusion at the economic, state, and civil levels of Canadian society. Economically, people
with disabilities rank among the lowest in terms of income, and the highest in terms of unemployment. In
1994, almost 60% of Canadians with disabilities had incomes below Statistics Canada’s poverty levels
($20,000 per year). It is now broadly accepted that unemployment and low income are strong indicators of
poor health. The following table describes this data by income level:
Figure I: Percentage of Adult Canadians with Disabilities (age 15-64) by Income Level
Percentage of Adult Canadians with
Disabilities
26%
Income Level
17%
$5,000 - 9,999
11%
$10,000 - 14,999
9%
$15,000 - 19,999
8%
$20,000 - 24,999
7%
$25,000 - 29,999
22%
$30,000 +
< $5,000
Canadians with disabilities also face unemployment and under-participation in the labour force at rates
substantially higher than those for other Canadians. The following chart illustrates these discrepancies.
Disability strongly influences other determinants of health and people with disabilities. For example, people
with disabilities have less formal education, than their non-disabled peers. This can be attributed to such
things as lack of access, and other disability related problems. Nearly half (45%) of the respondents to the
HALS survey, who had severe disabilities, had eight years of education or less. Many people with
disabilities report difficulty moving outside of their neighborhood because of challenges related to
community living. People with severe disabilities also are quite dependent on attendant support for
personal care needs. Finally, there is an alarming risk of malnutrition in children with disability which is
attributable to factors such as physical and cognitive disability and altered nutrition requirements due to
medical conditions (Shah)
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Doubly Marginalized Groups
Disability research addresses issues across all types of disabilities. Where people with disabilities have
been previously identified as a monolithic people, it must be recognized that they bring a variety of
experiences and levels of exclusion and stigmatization. Very little literature exists on doubly marginalized
group of people with disabilities, especially regarding Aboriginals, new Canadians, and aging people with
disabilities. Slightly more literature exists concerning women with disabilities. All accounts cite these
marginalized groups as facing exceptional barriers to full social inclusion.
According to HRDC, “30 per cent of Aboriginal adults report a disability, more than double the national rate”
(1999). This exceptionally high rate results from poverty, harsh living conditions, and lack of adequate
services (Fricke 1998) faced by many Aboriginal people in Canada. Disability for an Aboriginal person
creates different problems than for non-Aboriginal, urban Canadians. According to Stienstra & Kellerman:
“Aboriginal parents living on reserves have to relinquish guardianship of children with disabilities to gain
access to provincially funded special education programs”(1999). For Aboriginal adults, having a disability
often means relocating to an urban setting in order to receive adequate medical and social services. This
forces them into a “triple jeopardy’situation of being Aboriginal, living away from their home community,
and having a disability (Durst 1999).
New Canadians with disabilities face much different obstacles. “Exceptionality intersects with factors such
as gender and race or ethnicity in interesting and complex ways”(Banks 1997). Certain ethnic or racial
groups are more largely represented in categories of disability such as those with intellectual disabilities and
the learning disabled. Cultural differences in perception and acceptance of disability leads many ethnic
people with disabilities to remain isolated, without access to community services. Certain ethnic
communities view disability as a reflection of moral or religious behavior, of either the parents of the person
with a disability, or of the person themselves (Kowalchuk 1999; Ingstad 1995). Social scientific inquiry may
lead to insight into these issues, which must be addressed in order to find applicable and meaningful
solutions.
Women with disabilities are among the poorest people in Canada (HRDC 1998). They face much higher
rates of violence and abuse than non-disabled women: “It is estimated that women with disabilities are 1.5
to 10 times as likely to be abused as non-disabled women, depending on whether they live in the
community or in institutions”(Rivers-Moore). Their ability to provide care for their children has been
undermined by recent cuts in federal funding for childcare (Masuda 1998), and by prejudicial attitudes
about parents with disabilities (Blackford, 1999). Women with disabilities lack access to education and
training programs that would help to reverse the poverty of this group (Masuda 1998).
Historical and Political Forces
Disability Studies has emerged as a discipline within the contexts of the Disability Rights and Independent
Living Movements which have advocated for civil rights and self-determination over the past two decades.
Since the 1970s, this movement on behalf of the rights of persons with disabilities in Canada and the United
States has achieved significant policy, and also helped in the emergence of Disability Studies by uniting
academics and advocates who discovered that they shared common concerns.
Canadians with disabilities have and continue to demand their right to equal citizenship, a demand which
includes equal access to education, employment, public access, family support services, transportation,
health care, and the development of research initiatives around these disability issues. In Unison: A
Canadian Approach to Disability Issues (HRDC 1998), calls for improved access to government programs
and services, education and training opportunities, and barrier free environments, among other things.
Most importantly, this document recommends changing the focus of government programs from ‘support’
to ‘participation’, from ‘dependence’to ‘independence’. The Federal Task Force on Disability Issues (1996)
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recommended that the government establish a “Canadians with Disabilities Act”, which would provide an
infrastructure to build policy, provide funding potentials, and serve as a centre of accountability on disability
issues in Canada. HRDC has produced other documents calling for increased participation of people with
disabilities (consumers) in decision making and planning around all issues: HRDC has been moving
towards working more in partnership with the disability community, and away from a directed style of
community assistance”(HRDC 1999).
The Social Model of Disability
Disability cannot be abstracted from the social world which produces it; it does not exist outside the social
structures in which it is located and independent of the meanings given to it. In other words, disability is
socially produced”(Oliver 1992: 101).
Disability Studies has broadened disability issues their historic place within the medical and rehabilitation
spheres to include the social and political aspects of Canadian society. This is consistent with an ever
broadening view of health demonstrated in such reports as the Premier’s Council on Health Strategy that
emphasizes the central importance of social and economic supports to achieving health. This changing
perspective on disability has resulted in the development of a "disability framework" which examines the
social, political and economic forces which have marginalized and oppressed persons with disabilities for
centuries. This paradigm shift has meant that persons with disabilities, along with their advocates and
allies, are taking an increasingly active role in demanding that society acknowledge their rights, eliminate
barriers to full participation and provide appropriate supports, with a view that these interventions, "will
enable people with disabilities to live in ways that are personally satisfying, socially useful and meet national
1
and international standards of social well-being, human rights and citizenship."
The traditional medical/rehabilitation model focuses on disability as physical impairment, with the goal of
maximizing individual physical potential. Although rehabilitation is acknowledged as an important process
for people with disabilities, it has been criticized for its individualized focus, its preoccupation with the
physical or cognitive limitations of the “patient”and with enhancing their ability to function “normally”within
society (DeJong 1979). Research conducted under this paradigm has focused its inquiry in disability on
long-term dysfunction in the lives of people with disabilities, and ignores the social implications (Verbrugge
1990). The Social Model seeks to define disability in terms of social and environmental limitations.
The social model of disability has shifted the focus of inquiry away from individual impairment and society’s
construction and interpretation of disability. Linton compares the impact disability theorizing can have by
comparing it to Women’s Studies. When feminists differentiated between ‘sex’and ‘gender’, they allowed
gender to be analyzed as a social construction separate from the biological determinant of sex. Similarly,
when disability scholars differentiate between ‘impairment’and ‘disability’, the social model may also be
applied to disability (Linton 1997: 536).
The focus of disability research must be on the social factors which interact with the individual in either a
disabling or empowering way (Verbrugge 1990), in other words, research must be conducted within the
Social Model of disability. Oliver concurs with this view, stressing that the experience of disability should be
understood in terms of material factors, life histories, and with respect to the meanings assigned to life
events by individuals with disabilities (Oliver 1992).
1
Marcia H. Rioux "Enabling the Well-Being of Persons with Disabilities" Paper presented to The World
Bank, Washington D.C., March 1998. p. 1.
7
Many other scholars also argue for a larger, more encompassing social model of disability. Hughes, for
example, claims that “the social model...actually concedes the body to medicine and understands
impairment in terms of medical discourse”(Hughes1997, 326). The social model must therefore embrace
body politics, as feminist discourse has, in order to confront the medical monopoly over the body. One way
this might be addressed is through the inclusion of individual (phenomenological) experiences within the
Social Model of disability. Research must stress subjectivity and locate individuals with disabilities within
both the social and the personal context of the disability experience (Shakespeare 1994).
Participatory Action Research
The Social Model demands the participation and control of persons with disabilities and their agencies over
research. Scholars and consumers have referred to Participatory Action Research (PAR) designs as
models for disability research. PAR emerged, in part, through a marriage between pure and applied
research in social science (Whyte 1991), which has allowed researchers to create a process by which to
conduct research while promoting positive change within the communities they research. According to
Eldon (1987), Participatory Research is designed so that those affected by the research are directly
involved in the definition of the problem, methods of choice, data analysis, and use of the findings.
PAR provides an opportunity for individuals to identify their own strengths and needs and to generate long
lasting solutions where ‘expert strategies’have failed (Simonson 1993). This type of research therefore has
practical relevance for the population under study (Stone 1996). In order for researcher to claim
Participatory design, the research must undertake to improve the situation of the population it researchers,
through empowerment, education, and the creation of change (Bowley 1997).
Methods of research within this model, referred to by some as “Emancipatory Research”, require that
researchers surrender their claims to objective expertise, and respect the subjects expertise in their own
situations (Gilgun 1998). They should take a subordinate role in the direction and control over research by
non-disabled researchers (Stone1996). Advocates of the Social Model argue that the only way research
will have a positive impact on the lives of people with disabilities is to involve them in a meaningful way in
the research - through emancipatory designs (Oliver 1992).
A similar move towards participatory models can be seen within the rehabilitation community: “consumerdirected disability policy and rehabilitation programming should be based on the presumption that
consumers with disabilities are the experts on their service needs”(Kosciulek 1999: 5). He goes on to say
that consumers must direct and control the delivery of services, their service options, have information
made available to them, and participate in systems design and service allocation. These components
would “facilitate more effective policy making, program implementation, and research”(Kosciulek 1999: 5).
Success of PAR depends on strong linkages between the research team and the community (Bailey 1992).
Most importantly, PAR must provide an opportunity for equal participation in decision making and control
for both consumers and researchers (Cantrell 1993; Liberati 1997; Stone 1996; Zarb 1992). For a truly
emancipatory paradigm to be followed, researchers must be made “directly accountable to disabled
people”(Zarb 1992).
Summary
The disability process has become a very significant area of research in the past 30 years. At present,
there is a vast potential network of researchers available in Canada who are involved in multi disciplinary
research targeted at all aspects of the disability process. Evidence of the vastness of this network can be
found in, for example, the development of interdisciplinary health and social research centres in the
Province of Quebec, the Canadian Consortium on Rehabilitation Science, the Research Network on Social
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Participation (INDCP’s) and the network of Canadian researchers at the Canadian Centre on Disability
Studies. The proposed Institute creates a unique opportunity to formalize this network and create a process
for interdisciplinary and multisectoral disability process research.
Methodology
Originally, two separate proposals were submitted by the Canadian Centre on Disability Studies (CCDS) in
Winnipeg and the International Network on the Disability Creation Process in Quebec (INDCP), both of
which proposed the creation of an institute broadly focused on disability issues. Because the proposals are
complementary, SSHRC asked us to develop a joint paper. A joint action plan for designing an
interdisciplinary and pan-Canadian multisectoral research Institute on Disability Process.
Leaders from the two research teams met in Winnipeg in order to develop a process for combining the two
proposals. At this meeting it was decided that consultation would be sought cross-Canada from as many
consumers, disability organizations, and researchers as possible. This feedback would be solicited through
an initial mailing describing the process of the CIHR and including the original two proposals from CCDS
and INDCP. This mail-out requested feedback on the proposals, the CIHR process, and a request for their
participation in the proposed institute. The mailing also included announcements of four focus group
meetings to be held across Canada in Quebec City, Ottawa, Winnipeg, and Calgary. A sample of those
who received the mailed package also received follow-up phone calls.
A broad Literature Review was conducted on disability. This review presented information on the Social
Model of Disability, Canadian policy on disability, participatory models for disability research, emerging
issues in disability research such as doubly-marginalized groups, new Canadians with disabilities, and
employment issues, among many other things. This review has helped to illustrate the many barriers faced
by people with disabilities in achieving full social participation in Canadian society.
In spite of the limited time available, an extended effort was made to elicit feedback from consumers,
researchers, and community and academic organizations involved in disability research. A mailed request
for feedback was sent to over 800 individuals and organizations. Given the short turn-around, a response
rate of 124/700 was considered to be quite successful by the research team.
Four focus groups were organized, one each in Quebec City, Ottawa, Winnipeg, and Calgary. These
meetings provided community organizations and individuals the opportunity to discuss their views on a
Disability Institute and to provide feedback on the original proposals. These meetings were attended by
approximately 55 people, and resulted in a wealth of important information on the scope and process of a
disability research institute.
The following questions were asked to both the focus group participants and all those who received the
mailing:
1. How can the two proposals be melded into a cohesive framework that will guide our position paper?
2. What is missing from the two proposals?
3. What aspects of an Institute on Disability will be important to ensure that you (your organization) can
participate fully in research fostered through the Institute? What specific constraints need to be
addressed to ensure your full participation?
4. What type of structure and operational mechanisms (e.g. location, funding process, peer review, ethical
procedures) will be useful for ensuring equitable participation by all constituents?
5. How can we structure an Institute on Disability to ensure that social and consumer based research can
coexist with biomedical research on disability?
6. Are you willing to participate in an Institute on Disability as a researcher, community partner, or in some
other capacity? If yes, please complete the attached information form.
9
The focus groups were taped and transcribed so that they could undergo a Key Theme Analysis. These
themes were considered in the final preparation of the position paper.
A three page summary was compiled for distribution to SSHRC. This summary provided the basis of this
final position paper. It was distributed for feedback to all individuals and organizations who provided written
feedback or who participated in the focus group meetings.
Throughout the process of compiling this paper, the Winnipeg and Quebec research teams met 3 times in
person, and several more times through conference calls, telephone conversations, and e-mail contacts.
The Framework
An institute that addresses the disability process must rely upon a coherent frame of reference that
integrates all components of prevention, adaptation, rehabilitation and social participation of people with
disabilities. This conceptual framework must be useful for all people involved in the Institute: the people
with disabilities, researchers, service-providers, and policy-makers. It must allow for the articulation of the
organization and evaluation of services, programs and policies, as well as research and teaching activities,
academic training, service providers training, the dissemination of knowledge and appropriation of the
results of research for action and social change. This framework should also provide a common language
that becomes an essential tool for the accomplishment of multi-disciplinary and multi-sectorial integration
that is inherent in the concept of the Canadian Institute for Health Research.
This proposal is grounded within the Disability Creation Process (DCP) framework developed by the
International Network on the Disability Creation Process (INDCP) (Fougeyrollas P., Bergeron H., Cloutier
R., StMichel G., Côté J. 1996, 1998). This theoretical conceptual model relates to the understanding of
causes and consequences of disease, trauma and others disruptions to integrity and development of a
person and is well validated and widely applied both in Canada and internationally. It was developed in
relation with international debates co-ordinated by the World Health Organization (WHO) on the revision of
an international classification (International Classification of Impairments, Disabilities and Handicaps ICIDH) ( Fougeyrollas P., Noreau L.et al 1998)
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Ri
sFa ktor
c
s
Cause
P
eonar Fa
s
l tor
c
O gani
r
c
S te
y sm s
Integrity
Impa i mentr
Env onm
i r nta
e Fa
l tor
c
s
Capabi til ei
Ability
s
s
Fac li ator
it
Disability
Obstac e l
Interaction
Life Habits
Social Part ci at
i on
p i
© IN
Handicap Si uatit n o
H / CC ICIDH
SP 1998
Figure 2: The Disability Creation Process
The DCP is based upon an interactive, anthropological, universal, person-environment model. This model
allows for the creation of interdisciplinary research based on its different conceptual dimensions. The
dimensions of this model are: risk factors (causes); personal factors that are sub-divided into organic
systems (impairments), functional capabilities (disabilities) and socio-cultural identity; environmental factors
and life habits (handicap situations). The model assumes that disease, trauma and other disruptions to the
integrity and development of a person may cause organic impairments and functional disabilities of a
stable, progressive or regressive nature. The traditional bio-medical model is necessary and of high value
when it is directed towards a diagnostic (etiology, pathology, manifestations) and curative approach. But the
construction of this Institute will also take into consideration the insufficiency of the curative bio-medical
model in understanding the social consequences of long term organic and functional differences , and the
contemporary socio-political disability model that insists on social change and equalization of opportunities.
It is the diverse obstacles or facilitators encountered in real life that become a new target of priority
research. In fact, these environmental factors in interaction with a person’s impairments and functional
limitations may compromise the accomplishment of his or her current activities and social roles. They may
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also foster full social participation, or, on the contrary, a handicap situation (social exclusion) (Nagi 1965,
WHO 1980 ; Badley 1987; Minaire 1992, Bickenbach 1993, Fougeyrollas 1995, Oliver 1993).
The Axes of Research
The proposed Institute is founded on the effective participation of people with disabilities and their organizations in all aspects of research and transfer of knowledge. This is in keeping with the emerging model of
participatory action research. At the same time, the success of the Institute will be based on a multi
methodological approach inherent in the large spectrum of research covered by an institute on the disability
process.
Proposed areas of research grounded in the participation of consumers, services providers, policy makers
and interdisciplinary researchers are:
A. Prevention of the causes of significant and long-term impairments and disabilities among the
population
For example, the domains of health and work security in relation to the problem of
- back pain or vocational acquired deafness
- road accidents
- aging
- loss of autonomy and adaptation strategies
- aging process for people living with congenital or acquired impairments and functional limitations
during life span
- access and quality of services related to perinatality and premature births
- reproductive technology
- social poverty
- social violence
These research domains are of crucial importance in understanding the disability process. These
domains of primary and secondary prevention related to long term and significant impairments and
disabilities will be addressed by cross-cutting theme institutes such as health promotion, aging, ethics or
specific disease related Institutes on cancer, genetic diseases, arthritis or mental health. Degrees of
overlap and collaborations on general predisposing and triggering risk factors and causes will depend
on the fields chosen by CIHR. A specific interest of a research institute on the disability process is the
development of knowledge on systemic secondary aggravating causes of additional health problems,
impairments and functional limitations for people living with existing organic or functional differences.
Some examples are the psychological problems caused by stigmatization, social exclusion, double
marginalization status or the aggravation of physical or intellectual limitations related to a poor access
to interpersonal stimulation, educational services, compensations of extra costs , architectural or
transportation barriers, family burden and so on.
B. The development of knowledge on significant impairments and disabilities as consequences of
diseases, trauma and others disruptions in the development or integrity of a person as well as
methods of intervention and compensation in adaptation and rehabilitation
Examples of diseases, trauma, and disruptions in development are:
Diseases:
·
stroke
·
Alzheimer
·
arthritis, multiple sclerosis, schizophrenia, glaucoma
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Trauma:
·
spinal chord injury
·
brain injury
·
amputation
·
psychological traumas related to family or sexual violence
·
cerebral palsy
Disruptions in the development or integrity of the person:
·
Down syndrom
·
intellectual development
·
congenital deafness
·
autism
All of these conditions need to be considered in relation to all ages consumers, as well as motor, visual,
auditory, language and speech, intellectual and psychological dimensions.
This research axis is strongly connected to the rehabilitation sciences. The initiative to create a
consortium on the rehabilitation sciences as a part of the CIHR initiative is very much in keeping with a
broad-based institute on the disability process. The letter of support from this group emphasizes the
complimentary nature of the consortium and an institute on disability.
Research dimensions related to this axis which were specifically stressed during the consultation
process were:
·
giving an equitable importance to the field of adaptation and development of people with
intellectual disabilities (41% of the population with disabilities)
·
the rehabilitation of people with long term mental health problems
·
people with multi-impairments conditions
·
aging process and adaptation of people with disabilities
·
follow-up and long term maintenance of physical, intellectual and behavioral performance
·
the consideration of socio-cultural identity and life-projects
·
participation and control of the consumer in the dynamics of the interdisciplinary team
·
consideration of the real life context in the adaptation/rehabilitation individualized service plan
·
the role of family and proxies in the rehabilitation process
·
the impact of adaptation/ rehabilitation approach focused not only on physical and psycho
social performance but also on quality of social participation and quality of life outcomes.
C. The study of personal and environmental determinants of social participation defined as the
result of an interactive process
The field of disability studies is a neglected and poorly funded field of interdisciplinary and multisectoral
social research. This axis is related to the study of social integration and the understanding of complex
interactions between an individual or population. The dimensions of social participation can be hindered
or facilitated by environmental influences such as physical factors (built accessibility, climate,
geographical distance) and social factors (governmental structures and responsibilities, income security
policies and programs, economic factors as labour market and adapted resources supporting the
employment of people with:
·
·
·
·
disabilities
social poverty
accessibility to educational services
leisure facilities
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·
·
·
·
·
public infrastructures as transportation
tele communication services
impact and access to technological development in general and to specific assistive devices
socio-cultural factors as attitudes, social network as peers, neighbours, community members,
service providers
informal social norms and formal rules as legislations, law, official policies
The development of research within a cultural and socio-political perspective is based upon the
viewpoints of the people concerned (independent living movement, social minority group approach,
evolution of paradigms, struggle against inequity factors, disruption of the exercising of a person's
rights, development of college and university teaching programs within this field).
Crucial research areas identified in our focus groups were:
- issues of doubly marginalized groups of people with disabilities such as Aboriginal people with
disabilities, new Canadians with disabilities, lesbians and gays with disabilities, women with
disabilities, older people with disabilities and children with disabilities ;
- emerging fields or cutting edge areas in disability studies such as innovations in technologies,
entrepreneurship as a viable path to employment for people with disabilities, "caring" professionals
with disabilities, parenting with a disability, eugenics
- best practices in international participatory action research into disability issues in locations in which
partners have already established research links such as Russia, the Ukraine, Japan, Mexico, and
China.
D. The organization and evaluation of services, programs and policies related to health services,
rehabilitation and multisectoral support to the social integration or inclusion of people with
organic or functional differences
This axis is also related to rehabilitation sciences , social research and disability studies. Research
priorities are:
-
-
-
studies of the evolution of needs for people with different types of disabilities and social participation
restrictions
the evolution of needs of families and proxies
studies related to changes in the health services delivery toward home care services
planning, organization and functioning of adaptation, rehabilitation and long term social integration
support services. Relevant studies are related to characteristics of rehabilitation and social
integration
analysis of the process of change in services organizations and professional practices, community
organizations controlled by consumers , social economy, independent living centres
identification of factors facilitating or hindering organizational modalities answering to needs and
characteristics of people with disabilities, and criteria of efficacy and efficiency in the use of
resources
exploration of effects of organizational modalities on families and proxies
studies related to outcomes research
development of information systems, program assessment, impact of deinstitutionalisation, as well
as studies of cost-benefit, progress measures, results and efficacy, development of assessment
tools specifically related to the application of the DCP model and specifically for measuring quality
of domains of social participation and impact of environmental factors, quality of involvement of
people with disabilities and families, etc.
It is important to be mindful of the fact that the axes of research will continue to change over time.
14
The Organizational Structure of the Institute
CIHR has been conceptualized both as a topic-specific institute as well as cross-cutting issues within these
institutes. CIRH must accommodate research on the disability process through the creation of a Disability
Institute as well through the infusion of disability research across other related institutes. For example, an
Institute on Aging must address disability as a part of its research mandate on life-span related issues; a
Cancer Institute must address the social impact of the disability process related to cancer. The vision of an
Institute on the disability process is that it would not only serve to facilitate its own research program, but at
the same time would collaborate with other related institutes to facilitate disability related research.
The Institute will be constituted by key stakeholders including:
·
·
·
·
Peoples with disabilities, including people with all types of impairments, from all age groups and
including family and family supports
Researchers from a diversity of disciplines ranging from economics, sociology, education, architecture,
engineering, etc., to traditional bio-medical and rehabilitation sciences. The Institute will be particularly
committed to the inclusion of researchers with disabilities
Service-providers including individuals involved in the continuum of health and social services as well as
other sectors (employment, education, transportation, leisure, etc.), and including the private sector
Policy-makers drawn from all levels of public and private policy making, ranging from local to national.
Governance of the Institute
Governance of the Institute will be guided by the following principles:
·
·
·
·
equitable representation of key stakeholders within the governing structure, including the participation of
people with disabilities as partners at every step of research administration and planning process
regional and linguistic representation within the governing structure
research programs will be driven by a collaborative process which includes input ranging from local to
national
research programs will be representative of the perspective of the key stakeholders
The governing council should be constituted of representatives from the 5 following regions: Atlantic,
Quebec, Ontario, Prairies and British Columbia. Representativeness of the members of the council will be
based upon the main axes of research, the diversity of stakeholders and the region of origin. The position
of chairperson would rotate according to two criteria: region of origin and type of research (biomedical and
social).
The governing process of the Institute encompasses the following items:
A. Planning of Research
It is of the utmost importance for the Institute to define and adopt a research needs assessment and
prioritization process informed by local as well as regional and national issues. It is also crucial that the
Institute collaborate with existing local and regional mechanisms and structures in the assessment and
prioritization of research themes (eg. funding agencies, universities research centers)
B. Grant Programs
15
The grant programs should address a breadth of standard as well as strategic research themes. Particular
emphasis should be placed on research projects emanating from stakeholders (e.g. persons with
disabilities) and developed in collaboration with researchers
The Grant programs should also cover other funding issues including mentoring and support of young
researchers, transfer of knowledge, dissemination of research results and support of stakeholders,
including participation of people with disabilities at every step of the research process.
C. Assessment
We propose a two-fold mechanism for assessing research: a relevancy committee and a scientific
committee. Our proposal is detailed in a further section of this text.
Representatives of the Institute on other cross-cutting institutes boards
Representatives of the Disability Process Institute should sit on other institutes’boards that are relevant to
disability to insure that the question of disability process is addressed. For example, on the boards of the
Institutes addressing the first axis of research, i.e. prevention.
Review process
A fundamental issue in disability research has been participation of consumers and stakeholder
organizations in peer review processes and evaluation of the ethical and community impact of research.
One mechanism for insuring consumer participation and involvement of stakeholder groups has been
research funding process requiring that the investigators demonstrate the commitment and full participation
of “community partners”. For example the special competition supporting research on disability-related
issues sponsored by the Social Sciences and Humanities Research Council encouraged investigators to
document the participation of partners, including other academic centers and consumer organizations
representing the community of persons with disabilities (SSHRC, 1994). Ideally partnership was intended to
foster balanced participation with consumer and stakeholder organizations in identifying relevant problems,
design and grant writing, data collection and interpretation and dissemination of results. Although this
initiative and subsequent competitions emphasizing community partnership have fostered linkages between
academic centers and consumer organizations with established research agendas, key informants
attending the focus groups emphasized that:
1. research was predominantly initiated by researchers in universities, rather than consumer
organizations
2. consumer organizations had limited resources to do the preliminary work of defining problems,
identifying potential partners and writing fully developed proposals which were more likely to receive
funding
3. full partnership was emphasized in the initial stages of project development and frequently was not
maintained throughout the duration of the project
4. consumer organizations were at a disadvantage in competing for grant funds in partnerships and in
developing independent submissions because they had limited overhead resources including research
staff who could do the preliminary research and development of proposals
5. the process of internal review from the consumer perspective for relevance, and methodological and
ethical appropriateness was usually documented by requiring submission of letters of support from
consumer organizations or recruitment of co-investigators from the organization or disability group.
There was usually no way of determining whether the letter of support or commitment to coparticipation reflected the consensus of the members or even the governing bodies of consumer
organizations. In particular it was difficult to establish the degree of support and commitment to
research problems which involved consumer participation across disability groups.
16
6. In conventional peer review of research initiatives which were defined as participatory partnership with
consumer organizations there was often no mechanism for assessing extent to which consent and coparticipation were negotiated as continuing process. Funding agencies and ethical review boards
seldom had adequate mechanisms for monitoring compliance with ethical contracts and assessing
whether each partner met their commitments to participants.
Some of the initiatives which would be undertaken by the Disability Process Institute in addressing these
criticisms of the existing system of peer review for disability research which would maximize the input of
consumers and stakeholder organizations would include:
1. Development project development grants which would allow consumers and consumer organizations
to commit time and resources and hire external consultants to develop problem statements and
fundable research proposals.
2. Development of research funding mechanisms allowing consumer organizations to submit directly to
CIHR or other research councils independently or as joint initiatives with university-based partners.
3. Development of mechanisms for including consumer expertise in (a) scientific review, (b) relevance
rating and (c) ethical review of proposed research focusing on disability issues. This would include a
two part review process as outlined below:
A. Relevancy Committee
The relevancy committee would be composed of people representative of different stakeholders
involved in the Institute. Their mandate would be to assess the relevancy of the research projects
presented. When a project is considered relevant, it is automatically referred to the scientific
committee for purpose of assessment of its scientific quality.
Criteria of choice for committee’s members:
- Regional representivity;
- Representation of all stakeholders;
- Representation of the different types of disabilities;
- Representations of families and proxies.
B.
Scientific Committee
The main objective of this committee would be to assess the scientific quality of the research projects
that were retained by the relevancy committee. One concern of the committee would be to ensure the
recruitment and participation of researchers with disabilities.
Criteria of choice for committee’s members:
- Representativeness based upon region of origin and types of research (programs)
- Scientific knowledge in the field of research
- Specific knowledge of the research theme or project
In working to develop a system of peer review of both scientific, ethical and policy relevant dimensions of
disability research, the Disability Process Institute would support development of peer review systems which
are scientifically rigorous and capable of evaluating the validity and feasibility of research developed by
investigators working in a wider range of disciplines and interdisciplinary areas. It would draw on the broad
network of individual researchers, centers of research excellence and centers of consumer policy expertise
identified in the focus groups and survey of individuals and organizations to work in the area of disability
studies. Scientific review committees evaluating applications for research funding within the structure of
individual institutes within CIHR and committees funding research which cuts across the priorities of several
17
committees would be able to draw on the expertise of members of the network who have expressed interest
and documented their areas of expertise and current research involvement.
The Disability Process Institute could also perform a dual role of training peer review committees reviewing
research in the area of disability studies and training individual consumers and representatives of consumer
organizations to participate more effectively in the scientific and ethical review processes. It could work with
committees to train reviewers without experience in the field of disability studies to enable them to
understand consumer-based frameworks for assessing interventions, such as the independent living model.
It could help interpret alternative design models, such a s participatory action research to reviewers and
committees who have not worked in research relationships in which research relationships are negotiated
and redefined over the life of the research program.
Finally the work of the Disability Process Institute could improve the peer review process within the planned
CIHR by providing resources to enable reviewers to evaluate the feasibility of proposals to conduct research
among individual consumers or within the structure of stakeholder organizations. In review of ethical
dimensions of research involving human participants and the consent of communities the Institute could
provide consultant expertise and training to enable review committees to:
1.
2.
3.
To help assess the validity of individual consent agreements for individual participants.
To assess the validity of agreements between organizations or collectivities and researchers
To monitor ongoing research processes in terms of compliance with (a) the original methodological
and ethical provisions of the protocol and (b) co-participation in the design, data collection and
interpretation and dissemination of research products.
Accountability
The accountability for this institute will exist on at least two levels:
-
The Institute will be accountable based upon its programs of research and the resulting research
outcomes;
The researchers and stakeholders funded through the Institute will be held accountable to the principles
of the Institute through requirements for transfer of knowledge and the effective use of research
outcomes by key stakeholders.
The Institute should support new emerging research teams. It is important to develop research that is
useful at the clinical and community levels and for public, para-public and private policies. The Institute
should endeavor to support service-providers involved in research in such a way that no harm be done to
the quality of services. It is of the outmost importance that the Institute adapt its practices to recognize the
time constraints that are a reality for many researchers with disabilities who very often need more time to
accomplish normal daily activities.
Transfer of Knowledge and Appropriation for Improving Health Services and Social Change
This is a crucial issue for the Institute of Research on Disability Process. The Institute must be able to
demonstrate its strong will to innovate in matters relating to dissemination of knowledge acquired through
research, e.g. alternate media, popularization, appropriation and systematic return to partners and
collaborators involved in the research. The Institute should allow mechanisms and means to disseminate
information about the Institute and its activities. As an example: Bulletin, Journal, other publications, etc.
Also, the Institute should go beyond the simple dissemination of research report or results. The research
results should be use for training of the service providers and consumers organizations and feed the
emergence and consolidation of Disability studies program in Canadian Universities.
18
Partner Network
The two key promoting partners for the Institute are The International Network on the Disability Creation
Process (INDCP) and the Canadian Centre on Disability Studies (CCDS). The International Network on the
Disability Creation Process is non-profit organizations that aims to develop research, information and
training concerning the conceptual evolution on the Disability Creation Process and the Determinants of
Social Participation of people with disabilities. This network addresses all types of impairments and
disabilities. Over the last ten years, it has contributed to the recognition of Quebec’s and Canada’s
expertise in the revision work of the International Classification of Impairments, Disabilities and Handicaps
(ICIDH). Patrick Fougeyrollas, who acts as co-principal researcher in this Institute project, is president and
director of research within this organization. The Board of Directors is made up of the representatives of
disability organizations, public organizations such as work and traffic accidents insurances (CSST-SAAQ),
l’Office des personnes handicapées du Québec (OPHQ), representatives of service providers, rehabilitation
centres, and researchers. INDCP is closely associated with the Institut de réadaptation en déficience
physique de Québec, university institute (Laval University). The INDCP is the parent organization of the
Research Network for Social Participation (RNSP). This project was subsidized, between 1994 and 1997,
within the scope of a collaborative research initiative between the Federal Status of Disabled Persons
Secretariat (HRDC) and SSHRC. It is the only Canadian network to have been subsidized within the scope
of this program. The network has more than 300 members from fifteen countries. One may note a
diversity in the composition of membership with regards to both training and fields of activity (research,
services, and consumer groups), as well as a multi-disciplinary and multi-sectoral influence.
Housed in Winnipeg, the Canadian Centre on Disability Studies is affiliated with the University of Manitoba.
CCDS board members, research committee members and research associates are located in educational,
advocacy and research centres across Canada. Incorporated in 1995, the Canadian Centre on Disability
Studies (CCDS) has its roots in Canadian disability organizations, community groups and representatives
from different faculties at a number of universities across Canada. A collaborative effort between the
community, University of Manitoba and the Government of Canada led to the establishment of an
Endowment Fund to make the Centre a reality. CCDS has established research project partnerships with
disability organizations, universities and colleges, governments and public and private agencies locally,
nationally and internationally. In partnership with the University of Manitoba a national summer institute on
curriculum for Disability Studies programs was held in 1996, and a Graduate program in Disability Studies is
being developed. CCDS is being proposed as the site for the international Disabilities Studies Association
meetings in 2001. In fact, the CCDS is closely associated to Canadian associations that promote the rights
of people with disabilities, community groups and representatives of different faculties of the University of
Manitoba. The support of the CCDS is essential and unavoidable in a Canadian Institute on the Disability
Process.
Table 1 provides an overview of the individuals and organizations who have committed to association with a
Canadian Health Institute for Disability Research. While this list is large and very diverse, it represents only
a fraction of the potential network that would be developed through the creation of a Canadian Health
Institute for Disability Research.
19
e I: Database of Researchers in Disability Studies
isation
Affiliated Organisations
Field of Interest
•Influence of disability perception on family
•Services process
•Immigration, aging and disability
•General condition of people with disabilities in ethnocultural communities
lti-ethnique
on des
icapées
Administration faculty of Ottawa University (OU)
•Performance measuring at work
ARCH: A Legal Resource Centre for Persons with
Disabilities
•Legal research: charter of rights, human rights, disability support. etc.
•Disability income programs
•Federal/provincial fiscal arrangements in relation to disability
Special education department of Sherbrook University •School and pre-school integration for kids with severe disabilities
(SU)
•Transition to adult life of young people with motor disabilities
•Preparation to work for young people with multi-disabilities
Ministry of Health and Social services
•Autonomy and social participation
Centre-Normand-Laramée
Centre de services en déficience intellectuelle
Mauricie/Centre du Québec (CSDI MCQ)
IRDPQ
CSDI MCQ
Leisure sciences and communication department of
Quebec University at Trois-Rivières
•International index and dictionary of rehabilitation and social integration
•Computer and clinical therapy for people with disability
Regional authority of Health and Social services of
Mauricie and Centre-du-Québec
Association pour la déficience intellectuelle – Centrede-la-Mauricie (ADI)
International network on disability creation process
(INDCP)
CSDI MCQ
Queen’s University, School of Rehabilitation Therapy
•Disability Policy Making
•Consumer Organizations
•Community Participation
Surrey Place Centre
•Autism
•Psy. and Behavioral Disorder in Persons with Mental Retardation and Autism
Ontario Association on Developmental Disabilities
•Quality of Life
•Families
•Vocational Supports
•People with head injuries
aptation
arie-Paule
•State and aging
Aboriginal People with Disabilities Roundtable
Education sciences of Quebec University at TroisRivière
•Intellectual disabilities
IRDPQ
•Visual disability rehabilitation
•Life habit and social integration
Institut de réadaptation de Montréal
•Intervention project
•Reorganisation and civic follow up
CH St-Julien
•Disability
Psychoeducation department of Quebec University at
Trois-Rivières
Rehabilitation department of Laval University
•Back pain and work
Dew Research
Office des personnes handicapées du Québec (OPHQ) •Evaluation and follow up of government policies and programs
•Poverty and condition of life
•Family support
•Fair compensation
School of Rehabilitation Sciences at Ottawa
University
•Bilingulaism and rehabilitation
•Hearing impairment
Linguistic and languages didactic department of
Quebec University at Montreal
•Bilingualism and rehabilitation
Social service school of Laval University
•social and professional reintegration of medullary injured
•Adaptation process of parents with disabled children
Andrée
Faculty of Health Sciences, School of rehabilitation of
Ottawa University
•Young adult with hearing impairment in regular school
•Early identification of hearing impairment
•Audiology
Alice
Audiology and Speech-Language Pathology Program
•Communication, culturally-based miscommunication
re-Jehanne
of Ottawa University
Association de l’Ouest de l’Île pour les handicapées
intellectuels
DAWN Canada
•Sleeping impairment
:
personnes
ences reliées
atrick
•Teaching
Religious sciences department of Quebec University at
Rimouski (QUR)
IRDPQ and INDCP
•Conceptual evaluation in the field of disability process
•ICIDH
•Personal and environmental determinants of social participation
•Progression and outcomes measures
•Program and social policies evaluation
Psychoeducation department of Quebec University at
Trois-Rivières
Audiology and speech therapy program of Ottawa
University
•Social integration of people with communication disorders
IRPDQ
•Head injuries
•Medullar injuries
•Mental health
•Community and disability
Centre Butter-Savoy and Horizon
Department of Nursing, University of Manitoba
•Multisensory environment & quality of life
Faculty of Rehabilitation Medicine
OPHQ
•Adapted books, Braille, communication
Project Inter – Seed Research officer with the Ministry
of Health, Policy Planning & Legislation.
University of Calgary Faculty of Ed. & Community
Rehabilitation Disability Studies Program
arlotte
Nova Scotia Allergy and Environmental Health
Association
aptation de
Institut de réadaptation de Montréal, service Social
•Partnership research, social construction and Disability, Narrative approaches to
community development. International construction and Interdisciplinary models
Studies.
•Social integration of people with head injuries
•Empowerment
Sturgeon Creek Enterprises
Office for Disability Issues
The Abilities Foundation of Nova Scotia
University of Victoria, Education and Nursing,
Interdisciplinary Doctoral Student
University of Victoria, Faculty of Human and Social
Development
Centre-du-Florès
•Collaborative research methodology
•Partnerships in community
•Entrepreneurship
•Community development
nformatique
erminologie
on et de
IRDPQ
•International index and dictionary of rehabilitation and social integration
•Computer and clinical therapy for people with disability
Centre-Normand-Laraamée
-
Intellectual disabilities
Centre-du-Florès
-
Psychoeducation department of Montreal University
-
University
•Work integration of people with communication disorders
Psychoeducation depatment of Quebec University at
Trois-Rivières
Equal Opportunity Office, City of Toronto
Mount Royal College, Dep’t Physical Education and
Recreation
•Disability and sport
•Adapted physical education
•Therapeutic recreation
University
-
Hearing disorders
The Migraine Association of Canada
Psychology school of Laval University
Ryerson University
•Cognitive evaluation
•Cognitive training
•Education psychology
University of Alberta
University of Manitoba Faculty of Education
•Social acceptance- friendships
•Community living-participation
•Inclusive education
University of Alberta. Dep’t of Occupational Therapy,
Faculty of Rehab
INDCP
•Social policy development and evaluation
Learning Disabilities Association
Canadian Injured Worker’s Alliance
•Literacy and Injured Workers
•Voc. Rehab and Re-employment of Injured Workers
University of Calgary
•Partnership research
•Social Construction & Disability
•Narrative approaches to research & community development
•International constructions and interdisciplinary models re: Disability Studies
Canadian Mental Health Association
•Violence towards women by mental health providers
•Housing
•Cross cultural mental health
•Experience in consumer empowerment involvement
Occupational Therapy of Rehabilitation Sciences of
Ottawa University
•Occupational therapy
•Coordination disorders and learning disability
Queen’s University, School of Rehabilitation Therapy
•Aging and disability
•Coping & social support among people with disabilities
•Spirituality & disability
•Community integration following rehabilitation
•Policy participation among people with disabilities
•Models of service to people with disabilities
School of Rehabilitation Sciences of Ottawa
University
•Impairment, technology and space capacities
Canadian Paraplegic Association Ontario
•Aging with a spinal cord injury in progress
•Employment participation for people with SCI
Department of Psychology, Queen’s University
Canadian Cystic Fibrosis Foundation
Huntington Society of Canada
University of Waterloo of Renison College
•Disability studies
•Quality of life in health and rehabilitation promotion
•Autonomy
•Physical, psychological, sexual and emotional abuse of people with disabilities
•School integration of disabled people in post-secondary school
•Research and advocacy in strategies of legislation
University of Calgary
-
Society for
Disabled
IRDPQ
Independent living and rehabilitation
•Quality of life
•Service and technology
•Evaluation and measures of life habits
•Children and motor disabilities
Centre for Research and Education in Human Services •Individualized funding
•Family support
•Employment
•Informal/formal empowerment
•Community Support
•Dual Diagnosis
•Advocacy & Grassroots Organizations
•Evaluation of social integration
onnes
Québec
ntoine
Children’s Hospital of Eastern Ontario
Learning Disabilities Association of Canada (LDAC)
CSDI MCQ
Disability Resource Centre - MSC 274, University of
Calgary
•Independent Living philosophy
Centre de réadaptation La Triade
•Programs and services evaluation
•Training and teaching in the health and social service network
University of Waterloo Recreation and Leisure Studies
•Social Policy
•Inclusive communities
•Community development
•Persons with developmental disabilities
•Older adults
•Participatory action research
Psychology departement of Laval University
•Computer science and reeducation
•Cognitive Reeducation
•Down Syndrome
•Alzheimer disease
•Thyroid function
•Regulation of iron metabolism
•Importance of iron in health and human behaviour
Neurogenetics Laboratory, Surrey Place Centre
Brain Injury Association of Nova Scotia
, Elizabeth
-
CSDI MCQ
Geriatrics unity research of LU
•Aging
CSDI MCQ
Centre Butter-Savoy and Horizon
Canadian Association of the Deaf
•Transportation
•Communication
•Education
•Technology
•Political socialization
•Human rights
•Employment
IRDPQ
•Collaboration between clinical personnel and parents with disabled children
Ryerson School of Disability Studies, Centre for
Evaluation Research in Human Services
Glenn Crombie Centre for Disability Services
•Many different areas
Doctoral Program Rehabilitation Science, Faculty of
Health Science, University of Western Ontario
•ICIDH
•Developmental disabilities
•Enhanced quality of life
Rehabilitation department of Laval University
•Transition, family, day nursery/work
énard, Astrid
•Nutrition, collaboration of family and intervener
Occupational Therapy program of Ottawa University
•Quality of services evaluation
•Occupational therapy
•Psychiatric impairment
University of Prince Edward Island
•Literacy
•Quality of Life of Children with special needs
•Inclusive Education
Human Resources Development Canada
INDCP
•Training
Public health board of Quebec
•Nurse practices with South-East refuges with mental disorders
•Severe mental disorders and community life
McMaster University, School of Rehabilitation
Science
•Aging and Disability
•Spinal cord injuries
•History of Med. and Rehab
•Canadian Disability Policy
•War and Disability in the 20th Century
•Human Rights and Disability
•Comparative Sociological History of Disability
OPHQ
•Policies and programs evaluation and follow up
•Leisure
•Domestic upholding
Muriel
Faculty of Health Sciences - McMaster University
Institute for Clinical Evaluative Sciences
Nursing professional Practice of the Patterson
education Centre, Ottawa Hospital-Civic Campus
•Communication disabilities
Conclusion
The Health Institute Design Grant process has created an air of expectation among all stakeholders as to
the creation of an Institute on the disability process. At the same time, these stakeholders have agreed that
the process has just begun and that the framework for this Institute needs to evolve over time with
continuing and meaningful involvement from all relevant constituents.
33
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59
APPENDIX B: LETTERS OF SUPPORT
60

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