Profile Of Post-Polio Networks and Self-Help Groups In Canada

(Editor’s Note: This article has been adapted from the executive summary of a report prepared by Doctor George Torrance and Doctor Joseph Kaufert for the Disabled Person’s Program Branch of Health and Welfare Canada. Further information on this report may be obtained by contacting the Disabled Person’s Program Branch).

The Canadian post-polio movement has been in existence barely a decade. The Ontario March of Dimes Post-Polio program dates from 1983-84, several other networks from the 1985-86 period, and many groups have been founded only in the last few years.

A common impetus was the lack of information, and of professional and agency response, to late effects of poliomyelitis which many polio survivors form the epidemics of the 1950’s were experiencing by the early 1980’s and which the media had begun to report.

By 1990 there were incorporated groups or networks in all four western provinces, as well as Ontario and Quebec, and almost 70 communities – counting the 3 branches and 39 area groups of the Post-Polio Awareness and Support Society of British Columbia (PPASS B.C.) and 19 of the Ontario March of Dimes programs-had a support group of some form. Although development in the Atlantic provinces was slower, groups are now emerging in New Brunswick and Nova Scotia.

There is no national registry of polio survivors in Canada, let alone information on how many are experiencing late effects.

It seems not unreasonable to estimate that there may be 40,000 polio survivors across the country now, although a considerably smaller number probably had paralytic polio.

The mailing lists of networks and groups across Canada indicate that approximately 7,500 polio survivors have made contact with one or more organizations.

Approximately 2,000-2,500 people have paid membership dues to a network or local support group. Recruitment has taken place mainly by self-identification based on media publicity. New publicity continues to bring inquires from polio survivors unaware of late effects.

Both the historical data on reported cases and the new inquiries suggest that the movement is still far from its theoretical maximum in reaching all polio survivors and potential members. The members come from a broad spectrum of previous impairment levels and current difficulty with late effects are not restricted to those with the most severe impairments.

The majority of members in groups across the country are in the 35-50 age range, consistent with having contracted polio in 1950’s epidemics. With some exceptions, members were not active in earlier cross-disability organizations or the disabled rights movement. Indeed, many had “mainstreamed” for 30 years and had little contact with other polios, let alone the broader disability movement.

A study was conducted in order to compile a profile of post-polio networks and community self-help groups in Canada with reference to their history, goals, organizational structure, membership, activities, relationship with other groups, future plans, and views on the formation of a national network.

The study is based on one or more of: visits, telephone interviews and questionnaires to identified groups across Canada.

The networks contacted include: the PPASS B.C.; the Northern Alberta Post-Polio Support Group (NAPPSG) based in Edmonton and the southern Alberta group (based in Calgary); Saskatchewan Awareness of Post Polio (SAPP) with groups in Saskatoon and Regina; Post-Polio Network (Manitoba) Inc.(PPNMI); the Ontario March of Dimes (OMOD) post-polio program, and the Quebec Post-Polio Syndrome Association (QPPSA).

In addition to these organizations, questionnaires were received from 16 individual OMOD chapters in Ontario and two PPASS branches and four area groups in B.C.

Contact was also made with emerging groups or spokespersons in the Atlantic provinces. These included Carol Randall in Fredericton New Brunswick, Virginnia Phillips and Charlene MacKenzie in Halifax-Dartmouth, Nova Scotia, Gerry McCormack in Charlottetown, P.E.I. and vivian Templeman in Saint Johns, Newfoundland.

The objectives of the networks and individual groups are fairly standard across the provinces. They typically include:

- reaching all polio survivors with information

- social support to persons experiencing late effects

- promoting improved assessment, treatment services, and better knowledge by health professionals

- encouraging research

- communicating with other networks and groups.

In addition, some networks also include broader advocacy functions such as lobbying for improved benefits and seeking recognition of post-polio syndrome or late effects for disability pensions, insurance, etc.

Organizational structure presents a variety of models at both the network and the local group level. PPASS B.C., NAPPSG, Southern Alberta, SAPP, PPNMI, QPPSA are independently incorporated and registered as charities in their own right. The OMOD chapters are affiliates of an existing charitable agency.

In the case of Quebec and Manitoba, there presently is just one branch in the main city in each network. The others have two or more affiliated groups.

PPASS B.C. offers individual memberships in the Society with local group membership optional. OMOD functions mainly as a federation of local branches with no central membership and dues optional with local branches.

In the informal network in Alberta, and in the more integrated SAPP network in Saskatchewan, there appears to be more of a peer relationship between the branches.

Within local branches and groups, there is also a variety of organizational models. Groups vary in size, formalizations of structure, frequency of and format of meetings, whether dues are charged, functions emphasized, and degree of member participation.

The degree of activism and depth of member participation is variable. While some groups have faded after the initial meetings to a low level of participation, a substantial number have now sustained regular meetings and good participation for several years or more.

Certain functions are common to most networks:

- maintain registries of polios and health professionals

- help establish local groups

- clearinghouse for coping and scientific information

- provide information packages to polios and professionals

- regular mailings of new information to branches

- organize conferences, meetings

- produce videos, brochures

- circulation of newsletters

- media interviews

- some advocacy (see below).

At the local group level:

- face to face information sharing and support

- newsletters

- information to, and from, local health professionals

- lobbying for improved local health facilities

- some support for local clinics and participation in research projects

- maintain local resource centres/libraries with material from head office, or collected themselves

- social and recreational functions

The relative emphasis on functions varies among the networks. Some place more emphasis on linkage with a particular clinic and supporting its regimens and activities than others. Attention to advocacy functions also varies, with different emphases among those active in this sphere.

Most local groups see their major functions being face to face information sharing and social support for members, providing information to, and securing information from, local health and social service professionals, and advocating for improved assessment and treatment locally or regionally. Although intense, emotional sharing and support such as some self-help groups feature may have figured in a groups’ early history, it does not appear to be predominant feature at the present time.

It is reported that up to date information, rather than personal interaction or support, appears to be the reason many members, ex-members or people who decide not to join make contact with the groups and networks.

Despite their accomplishments, the funding and resource base of most networks and individual groups typically remains rather modest. Existing agencies played a part in the start up phase of several groups. Apart from OMOD, these organizations have typically had a limited involvement rather than an ongoing commitment to financial support. Some networks have successfully obtained federal and provincial grants. Member fees, and donations are a main source of continuing revenue. Large scale public fund raising is rare. Most local branches tend to operate on a shoestring.

While some networks and groups see funding as a problem in expanding their activities, others seem relatively content with what they are doing now.

Obtaining knowledgeable and sympathetic assessment and treatment has been one of the major aims and preoccupations of the post polio movement. The need for improvement exists at all levels of the health care systems, primary, secondary and tertiary care.

Many polios are determined not to be passive participants in the process. There have been successes in achieving this agenda but they are uneven across the country. Through the action of the self-help groups, some specialized assessment and treatment programs, usually serving a province or a region, have emerged. Dedicated post-polio clinics now exist in Edmonton, Winnipeg, Toronto, Kingston, and Montreal and one is being planned in B.C. Although not dedicated exclusively to post-polio, general clinics with committed expertise also exist in Victoria and Vancouver, Calgary and Saskatoon.

The situation in the Atlantic provinces is reported as being much less promising. Rehabilitation specialists and primary care professionals appear to be more resistant.

As for research, several networks were involved in supporting clinical and basic science research into late effects by external researchers and in conducting surveys of needs and prevalence of late effects among their members. Both provincial networks and individual groups strongly support research initiatives and are actively involved in the diffusion of research results from Canadian and international publications.

A substantial number of clinical studies were reported at university centres in B.C., Edmonton, Toronto, Hamilton, London and Montreal. Many have resulted in publications in the international scientific literature on late effects. Many support groups used researchers as speakers. Establishing personal and clinical rapport between researchers and support groups was often seen as a pivotal factor in securing participation of research subjects.

Nationally, there is no coordinated research strategy. Although provincial health research foundations, the support groups themselves, and NHRDP and the Health Promotion Directorate have provided some funding, there appears to be minimal interest or commitment in the Medical Research Council or other providers of major centre grants.

The current generation of leaders in polio support organizations appears to include a relatively low proportion of individuals with polio-related impairment who had previous experience in the disabled consumer movement in Canada. Involvement by polio support groups with other cross-disability organizations was variable across provinces but generally rather limited.

The Manitoba network was the most closely tied to the disabled consumer movement through receiving founding support and board members from other cross-disability organizations. Saskatoon, Calgary, and PPASS B.C. also include members with experience in advocacy and previous membership in cross disability organizations.

Although the amount of politically conscious and organized joint activity by community groups appeared to be limited, a substantial number of piecemeal local and individual initiatives were reported. Some groups had begun to collaborate around events like Access Awareness week and to join others in advocating for improved facilities and programs for persons with disabilities.

Networking with other Polio Organizations is vital for information exchange. The most active communications among groups takes place within the bounds of provincial networks although there is also a fair amount of interprovincial and international networking.

Regionalized organizations like PPASS and OMOD support local or regional face to face meetings supplemented by phone networking and larger conferences and annual meetings. Most networks and large groups across the country produce newsletters. The exchange of newsletters widespread, promoting rapid dissemination of information.

Prior to the current interest in developing a national network, there was considerable informal interprovincial networking and sponsorship of support groups in less developed provinces. In 1990-91 the national network discussions stimulated new lines of communication between groups. In the area of international networking, the coordinating and information sharing role of Gazette International Networking Institute founded by the late Gini Laurie continues.

There was considerable variability in opinions among existing networks and groups about the need, structure, functions and priority of a new national network. The major networks are still divided on whether such a national network should be established and, if so, how it should be organized. Some are strongly in favour, some mildly so, others largely indifferent or suspending judgement.

Although the majority of existing networks endorsed an informal information sharing approach rather than a centrally organized network with broad functions, most seemed to feel that there were certain functions such as an information clearinghouse, a national registry, and coordination of research and advocacy that could benefit from a national approach.

Concerning what type of organization should act as “host”, the most support was for an existing polio-related organization. There was a generally strong feeling that the organization must be run by, and for, polio survivors themselves.

Most networks and local groups had plans for new projects over the next few years. At the networks level these included support for specialized clinics, development of membership, and outreach activities of various kinds.

Local group plans ranged from new ideas for speakers, producing a newsletter, investigating new recreational activities like swimming, seminars with health professionals, organizing mini-support groups, and building up their local libraries. There was a general sense that needs and membership will continue to grow, and that there was much left to accomplish of their original objectives.

There was also a fair degree of consistency in the roadblocks groups saw standing in the way of reaching their objectives. These included continuing indifference by some health professionals, politicians and government administrators; leader burnout and sustaining member participation; a tendency by some polios to minimize or deny problems, lack of breakthrough in research and treatment; and lack of resources. The divisiveness created by internal disputes and leadership succession crises was also seen as a problem.

The Canadian post-polio movement must be seen as a remarkable achievement in self-help over a decade. At the same time, it is clear that much remains to be accomplished, and that the movement faces some crucial decisions and turning points.

Unlike heart disease or multiple sclerosis, there are (fortunately) no new cadres of patients continually available as recruits to the movement. However, many polio survivors have still not been reached and aging of the population will bring an increase in the number experiencing late effects.

A general dilemma the movement faces is how to refresh itself and avoid stagnation. There is no shortage of talented potential leaders in the movement. As many now in their forties and fifties reach retirement age, they will have more time to turn their talents and energy to organizational activity.

Initially most groups concentrated on the medical and informational needs of their members. This remains a high priority. The movement is obviously now at a turning point in relation to the national network issue. There are very strong needs still to be addressed in certain regions of the country which a national network could help to solve. On the other hand, there is a strong and justified feeling that the strength and vitality of the movement should continue to reside in the regional networks and specific communities.

A dilemma is how much to continue to rely on, or seek the assistance of, either disabled consumer organizations or traditional rehabilitation organizations in this and other tasks. Whatever happens, the movement has already left a substantial legacy in terms of helping many people who faced distress in circumstances of professional inaction and social isolation.