The Quebec Classification

The Quebec Classification:

DISABILITY CREATION PROCESS

Patrick Fougeyrollas

René Cloutier

Hélène Bergeron

Jacques Côté

Ginette St Michel

Layout: Nancy Benoit

Secretariat Support: Manon Lachance

Nancy Benoit

Contributors: Patrick Fougeyrollas

René Cloutier

Hélène Bergeron

Ginette St Michel

Jacques Côté

Marcel Côté

Normand Boucher

Kathia Roy

Marie-Blanche Rémillard

Translation: Sandra Hopps

Financial Support: Human Resource Development - Canada

Ministère de la santé et des services sociaux - Québec

Legal Deposit: 4st Quarter 1999

ISBN 2-922213-06-4

(Original Edition: ISBN 2-922213-00-5)

Legal Deposit - Bibliothèque nationale du Québec, 1999

Legal Deposit - National Library of Canada, 1999

Publisher: INTERNATIONAL NETWORK

ON THE DISABILITY CREATION PROCESS

Distributor: INDCP / CSICIDH

P.O. Box 225

Lac St-Charles, Quebec

G3G 3C1

TABLE OF CONTENTS

1- IN MEMORIAM MARIO BOLDUC 2

2- HISTORY OF THE QUEBEC CLASSIFICATION 3

3- INTRODUCTION 7

4- CONCEPTUAL SCHEME AND DEFINITIONS 26

5- RISK FACTORS 31

6- ORGANIC SYSTEMS 41

7- CAPABILITIES 61

8- ENVIRONMENTAL FACTORS 95

9- LIFE HABITS 115

10- INDEX 131

In memoriam Mario Bolduc

Mario Bolduc, founding member of the Quebec Committee on the ICIDH as well as first line militant and collaborator for the development of the Quebec Classification of the Disability Creation Process, left us in November 1997.

All members of the International Network on the Disability Creation Process team are proud to dedicate this Quebec classification to him. May its diffusion and use echo his vision of a more unified and human society, and his thought that continues to inspire us:

“Clear concepts, based on reality, help dissipate confusion as to the nature of problems and their solutions. We could understand that even the notion “handicapped person” makes no sense! The fact that a person experiences handicap situations, in certain circumstances, cannot be assimilated to the social status that we accord a person for life. It is possible to live with impairments and have functional limitations without necessarily being continually disrupted during daily life. These handicap situations or restrictions in social participation will diminish as long as we act efficiently on the social and physical environment of the person. This understanding of things radically changes the perspectives and orientation of actions.” Mario Bolduc 1995.

History of the Quebec Classification

The origin of Quebec’s “Disability Creation Process” classification is closely related to that of the Quebec Committee on the International Classification of Impairments, Disabilities and Handicaps (WHO, 1980) founded in 1986. This non-profit organisation’s mission is to promote knowledge, application, validation, and above all, improvement of the ICIDH through research and collaboration between experts and Quebec, Canadian and international organisations interested in developing a standardised language and a better understanding of the consequences of disease and trauma.

In Quebec, the first major application of the ICIDH model was in connection with development of the “On Equal Terms” policy, adopted as government policy in 1985 in the area of impairment prevention, rehabilitation and social integration of persons with disabilities (OPHQ, 1984).

In collaboration with the “Office des personnes handicapées du Québec” (OPHQ), the Quebec Committee on the ICIDH (QCICIDH) organised, in June 1987, an international conference on the ICIDH in Quebec City. This meeting brought together for the first time international experts who are users of the ICIDH, consumer group representatives who defend the rights of people with disabilities and international organisations representatives such as the World Health Organization (WHO), the United Nations (UN) and the Council of Europe. This meeting was the starting point of an international dialogue centred on improving understanding of the Disability Process and the eventual revision of the ICIDH. Among the large number of observations made at this meeting, one is particularly important for understanding the research process that is at the origin of the work in Quebec. In fact, participants recognised Quebec’s expertise regarding the 3rd ICIDH level, handicap, which was considered inadequate and embryonic. They also heard Quebec’s formal request to consider environmental dimensions, both social and physical, and obstacles to social integration encountered by persons with impairments and disabilities. The QCICIDH and the OPHQ were thus given the mandate to propose improvements to the ICIDH’s 3rd level. Research directed by Patrick Fougeyrollas began in 1988 at the QCICIDH (Fougeyrollas, 1988). The Canadian Society for the ICIDH (CSICIDH), who has the same mission as the QCICIDH with a Canadian charter, was founded at this time as well.

In the winter of 1989, the first phase of research allowed publication of a review of the literature on the subject and a proposal for a new definition of the concept of handicap, accompanied by a taxonomy of life habits. For the first time, the environmental factors dimension was introduced into a conceptual model illustrating the interaction between impairments, disabilities and environmental obstacles, and defined handicap situations as the result of this interaction. A taxonomy of ecological social factors was thus proposed. Furthermore, the new conceptual approach to handicaps required continuation of the revision process for disabilities and impairments, given the conceptual overlaps existing in the original ICIDH and aggravated by the clarification of the concept of handicap situation. This newly proposed approach was defined as the situational result of the interaction between a person’s functions and limitations, and his/her performance in life habits that require definition of the context in which they are carried out. A first body functions classification outline was thus proposed. This first proposal was submitted to an international consultation (Fougeyrollas P., St Michel G., Blouin M., 1989). In January 1990, a colloquium on the revision of the handicap concept was held in Montreal. Furthermore, the proposal was presented at several scientific meetings.

The research group’s collection and analysis of comments extended from the winter of 1989 to spring 1991. A taxonomy of organic systems and abilities, along with their severity scales, were developed for the first two impairment and disability levels. The two other taxonomies had already been developed and revised. The Quebec classification proposal was published in June 1991 (QCICIDH., 1991). It was complete and ready for experimentation as part of the ICIDH revision process.

Despite QCICIDH’s and the Canadian Society on the ICIDH’s (CSICIDH) representation within the international expert committees of the WHO and the Council of Europe, as well as at UN meetings on the Decade of Persons with Disabilities, it took the WHO a long time to begin the revision process. Although there was constantly increasing criticism of the ICIDH of 1980, there was also an increase in the number of applications and research on the consequences of disease and trauma, and growing recognition of the importance of socio-cultural and physical variables in the social integration process.

During this time, the QCICIDH and CSICIDH concentrated on distributing their work, developing training and user-friendly instruments, and illustrating the research of diverse investigators on the many application possibilities in individualised intervention, policy and program planning or assessment, and even population statistics and surveys. The Handicap Creation Process model and the Quebec Proposal became valued by many researchers and users in Canada, France, Belgium, and Sweden (Mautuit D. 1994, Castelein P and Noots-Villers P. 1994, Sjögren O. 1995). As for the Quebec proposal, it had a large influence in all areas including research in rehabilitation and social integration. (Beaulieu M. 1992, Bolduc M. 1995, Bouchard D. 1992, Côté M. 1994, Fougeyrollas P. Noreau L. 1995, Fougeyrollas P. Majeau P. 1991, Gaudreault C. St-Amand H. 1995, Gaudreault C. Madon S. 1996, Gauthier J. 1996, Lacroix J. Joanette Y. Bois M. 1994, Lalonde M. 1994, Martini R. Polatajko H.J. Wilcox A. 1995, Muszynski L. 1994, Rousseau J. Potvin L. Dutil E. Falta P. 1995, Simard C. Berthouze S. Calmels P. 1996).

Finally, in 1992, the revision process co-ordinated by the WHO began. The first result was an update of the ICIDH’s introduction (WHO, 1993), in which Quebec’s work was clearly identified and several of our proposal’s characteristics, such as the person-environment interaction, the definition of handicap as a result of this interaction, and the importance of environmental variables were highlighted.

At this time, the United States joined the revision work, creating the North American Collaborating Centre on the ICIDH at the National Center for Health Statistics in Washington, in partnership with Statistics Canada.

The planning of ICIDH revision is expected to last six years, until 1999. For the period of 1993 to the summer of 1996, responsibilities were divided between the various WHO Collaborating Centres. The French Centre was responsible for impairments, the Dutch Centre for disabilities and the North-American Centre for handicaps. Over the course of 1994, and after much pressure, an official task force was created for environmental factors. Patrick Fougeyrollas, president of the QCICIDH, assumed its co-presidency for Canada with Gale Whiteneck from the U.S. Other thematic task forces were also created: Children, Mental Health and Cognitive Development, and Social Policies.

In order for us to continue validating the Quebec Classification Proposal and use its work to contribute to the ICIDH revision process, the QCICIDH-CSICIDH revision committee set in motion a consultation process (Fougeyrollas P., Cloutier R., Bergeron H., Côté J., Côté M., St Michel G., 1995). It consisted of verifying the pertinence and coherence of the choice of conceptual segmentation, the proposed model and the taxonomies developed on the basis of the users’ applications and comments four years after publication. This work was done in parallel with the international task forces and was very helpful in supporting the handicap and environmental factors task forces. It also helped to structure critical remarks on the different draft versions developed on impairments and disabilities.

In September 1995, the CSICIDH organised the second meeting of North American experts on the ICIDH revision in Quebec City. Representatives from the socio-political movement for the defence of rights of persons with disabilities participated in this meeting. It marked a decisive turning point for clarifying the distinction between the 3rd level of handicap (“social participation") and environmental factors. An important confusion between handicap and environmental barriers had in fact spread since the United States and English Canada began to participate because of different understandings of the "disability" concept in English, which partly covered the social consequences dimension (as proposed by Nagi, 1976).

On the basis of this growing consensus, a social participation taxonomy proposal that was greatly influenced by the Quebec life habits taxonomy, was adopted by the North American task force. As for environmental factors, the QCICIDH Committee’s revision work was almost entirely retained by the task force. However, the impairment and disability proposals remained conceptually very similar to those of the original ICIDH that did not take into account the clarifications in the Quebec classification.

In May 1996, the task forces’ work was forwarded to the WHO’s Geneva meeting for discussion. During and after this meeting, an ICIDH 2 alpha version was prepared by the WHO team, introducing modifications to both the 3rd and 4th level taxonomies. Moreover, the taxonomy of impairments proposal now included mental as well as organ functions. The disabilities dimension covered all human activities, from simple to complex. This resulted in a working draft ICDH2 that was conceptually difficult to understand despite the success that QCICIDH proposals have achieved for the 3rd and 4th conceptual domains.

In 1996, the Canadian Institute on Health Information (CIHI) was officially designated as the Canadian representative within the North-American collaborative centre. The Canadian Society for the ICIDH was invited by the CIHI to continue its collaborating in the revision process and Patrick Fougeyrollas directed the Canadian consultation process on the alpha draft of the ICIDH 2.

At the end of 1996, the QCICIDH published a revision of the Quebec classification. This second complete version brought forth clarifications to the conceptual model, concepts and taxonomies of 1991; the result of the analysis of users’ comments and an in depth study of its applications in Quebec and internationally. Based on this publication, a final validation was carried out by the research team. This final phase of research targeted members of our organisation as well as groups of professionals, establishments, and public or consumer groups that contributed to its development and experimentation.

A colloquium aimed at collecting comments and exploring the questions to be resolved was organised in February 1997. This colloquium was carried out with a classification covering all the aspects of the disability creation process in mind, as well as the perfecting of an interdisciplinary language that is compatible with the diverse points of view of related professional disciplines or specific fields of applications interested in the various categories of users.

1997 and 1998 were then consecrated to the analysis of the results of this consultation, a follow-up on the international scientific literature, as was the continuation of our collaboration in the international revision process of the ICIDH 2. In April 1997, a second preliminary version was presented to the participants of an international meeting of collaborative centres in Geneva. Finally, a Beta-1 draft of the ICIDH 2 was distributed by the WHO team in July 1997.

The CSICIDH collaborated with the CIHI to carry out a Canadian consultation on this version. We co-ordinated one of the four Canadian consultation sites. Furthermore, we carried out the validation of the French-Canadian translation of the International Classification of Impairments, Activities and Participation. Because of delays due to translation into diverse languages, the consultation phase of the Beta-1 draft was prolonged until autumn 1998. The WHO now foresees the publication of the Beta-2 in spring 1999 and the eventual adoption of the ICIDH 2 by the World assembly of the WHO in year 2000.

In July 1998, the International Network on the Disability Creation Process (INDCP, new legal denomination of the QCICIDH) published a critical analysis and outlined the stakes and perspectives of the international evolution of definitions and classifications concerning people with disabilities (International Network on the ICIDH and Environmental Factors, August 1998). This issue was prepared in collaboration with the Canadian Centre on Disability Studies in Winnipeg and the Canadian Council of Persons with Disabilities.

It is not appropriate to discuss details of the critique of a working draft of the ICIDH 2 here. It demonstrates a positive progress since the socio-political and environmental models of the disability creation process have been recognised as being essential to balance biomedical and economical models centred on the person.