A Canadian Institute on the Disability Process

Transcription

1 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

2 INVESTIGATORS AND CO-INVESTIGATORS Investigator: Patrick Fougeyrollas Universite Laval Co-investigators: Alfred Neufedt The University of Calgary Alice Eriks-Brophy University of Ottawa Astrid Vercaingen-Menard Universite du Quebec a Montreal Chantal Laroche University of Ottawa Charles Pare Unknown/Other Clermont Dionne Universite Laval Colette Dubuisson Universite du Quebec a Montreal Jacques Barrette University of Ottawa Joachim Reinwein Universite du Quebec a Montreal Karen Blackford University of Manitoba Linda Garcia University of Ottawa Line Robichaud Universite Laval Luc Noreau Universite Laval Lucie Brosseau University of Ottawa Marie Gervais Universite Laval Meredith Wright The Ottawa Civic Hospital Michel Loranger Universite Laval Michel Pepin Universite Laval Myreille St-Onge Universite Laval Olga Krassioukova Canadian Centre on Disability Studies Rachel Thibeault University of Ottawa Rose Martini University of Ottawa Serge Dumont Universite Laval Investigators: Mike Mahon Karen Blackford Co-Investigators: Henry Enns Aldred Neufeldt Joseph Kaufort Kari Krogh Mary Tremblay Olga Krassioukova Patrick Fougeyrollas Susan Boutilier University of Manitoba Canadian Centre on Disability Studies Canadian Centre on Disability Studies The University of Calgary The University of Manitoba University of Victoria McMaster University Canadian Centre on Disability Studies Universite Laval Nova Scotia Community College

3 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. Prevention of the causes of significant and long-term impairments and disabilities among the population B. 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 C. The study of personal and environmental determinants of social participation defined as the result of an interactive process D. 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. Planning of research B. Grant Programs C. Assessment Representatives of the Institute on other Cross-Cutting Institutes Boards Review Process A. Relevancy Committee B. Scientific Committee Accountability Transfer of Knowledge and Appropriation for Improving Health Services and Social Change Conclusion Bibliography Letters of Support

4 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. 4

5 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 Income Level Disabilities 26% < $5,000 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 + 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) 5

6 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) 6

7 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 and international standards of social well-being, human rights and citizenship." 1 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 p. 1. 7

8 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 8

9 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

10 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 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) 10

11 Ri sfa k tor c Cause s P eonar Fa sl tor c O gani r c S te y sm s Capabi til ei s Integrity Impa iment r Ability s Disability Env onm i r nta e Fal tor c Facli ator i t Obstace l s Interaction Life Habits Social Partci at i on p i Handicap Siuatit n o IN H / C 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 11

12 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 12

13 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 13

14 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

15 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

16 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

17 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

18 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. To help assess the validity of individual consent agreements for individual participants. 2. To assess the validity of agreements between organizations or collectivities and researchers 3. 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

19 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 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

20 I: Database of Researchers in Disability Studies sation Affiliated Organisations Field of Interest ti-ethnique n des capées Influence of disability perception on family Services process Immigration, aging and disability General condition of people with disabilities in ethnocultural communities Administration faculty of Ottawa University (OU) ARCH: A Legal Resource Centre for Persons with Disabilities Special education department of Sherbrook University (SU) Ministry of Health and Social services Performance measuring at work Legal research: charter of rights, human rights, disability support. etc. Disability income programs Federal/provincial fiscal arrangements in relation to disability School and pre-school integration for kids with severe disabilities Transition to adult life of young people with motor disabilities Preparation to work for young people with multi-disabilities Autonomy and social participation Centre-Normand-Laramée Centre de services en déficience intellectuelle Mauricie/Centre du Québec (CSDI MCQ) IRDPQ International index and dictionary of rehabilitation and social integration Computer and clinical therapy for people with disability CSDI MCQ Leisure sciences and communication department of Quebec University at Trois-Rivières