History of Ostomy Canada Society

The United Ostomy Association of Canada Inc. (UOAC) became an independent entity following a meeting of representatives of Canadian Chapters in Calgary in June 1997. In 2014, the name changed to Ostomy Canada Society – read more of our history below…

Abridged Version of our History

The United Ostomy Association of Canada Inc. (UOAC) became an independent entity following a meeting of representatives of Canadian Chapters in Calgary in June 1997.

Prior to that time, Canadian chapters had been affiliated with The United Ostomy Association Inc. (UOA), based in the United States. The UOA was founded in 1962 with participation of people with ostomies who had formed informal self-help groups in both Canada and the United States. Canadian chapters were formed in all ten provinces, and were affiliated with UOA. However, by the late 1970’s, it had become obvious that Canadians had different needs in terms of advocacy than did Americans. Additionally, as the UOA could not issue tax receipts to Canadians, donations from Canada were declining. Consequently, in 1982 the board of directors of UOA Inc. approved the establishment of a Canadian office, located in Hamilton, ON with ‘Mr. Ostomy Canada’, Allan M. Porter as coordinator. Al continued in the role of coordinator until his retirement in 1994, managing an annual appeal for donations and responding to the needs of Canadian chapters.

In 1994 the Canadian office was relocated to premises in Mount Sinai Hospital, Toronto, ON. Les Kehoe became Executive Director in 1994, and retained that role until late 1998. The office remained in Mount Sinai Hospital until 2003, when it moved to its present location on Bloor Street in Toronto.

Meanwhile, in 1991, the United Ostomy Association of Canada had applied for letters patent under the auspices of the federal Minister of Corporate and Consumer Affairs, in order to place the Association on a more businesslike footing and to improve its profile. The first officers of the Association were elected in July, 1992; however, the Association was still part of the larger United Ostomy Association Inc.

The first president of the independent UOAC was Maria Siegl. Unfortunately, she died in November, 1997, and was not able to see UOAC fully develop.

A complete listing of past and present officers, directors and staff of UOAC follows this article.

Since UOAC became an independent entity, it has initiated many projects. A number of Policy and Procedure Manuals were compiled, including those for general organizational policies, annual conference planning, and the UOAC Ostomy Youth Camp. Visiting program guidelines have also been published.

UOAC has two member oriented general publications: Ostomy Canada magazine is a full-colour glossy magazine published twice per year and sent to all members of affiliated chapters. The UOAConnection is a newsletter sent to chapter presidents ten times per year. Both of these publications are prepared by volunteers. As well, a selection of educational material is available at a nominal charge from UOAC office.
(See the Publications section of the site.)

UOAC held its inaugural conference in Mississauga ON in 1998. In 1999 the conference was in Edmonton AB; in 2000 in Montreal QC; in 2001 in Richmond BC; in 2002 in Halifax NS, and in 2003 in Saskatoon SK. 2004 conference was held in Gander NF, and 2005 in Winnipeg MB. The 2006 conference was held in Moncton NB and the 2007 conference was held in Calgary AB. The 2008 conference was held in Hamilton ON. The conference has many informative sessions covering various aspects of life with an ostomy, as well as exhibits from ostomy product manufacturers and distributors, and social events. UOAC awards are presented in conjunction with the annual conference. The business of the association is managed through the Annual General Meeting, and pre- and post-conference meetings of the executive and board of directors.

Under the auspices of UOAC, each summer the UOAC Ostomy Youth Camp and its volunteer counselors welcome campers aged nine to 18 who have ostomies or related conditions. For more information, see the Youth Camp section on this site.

UOAC has established the District Support Services (DSS) to liaise with chapters and provide assistance and guidance, as well as to encourage the growth of chapters through locally based initiatives, such as building relationships with ET nurses, conducting visiting programs, and holding chapter meetings. DSS has an overall director, regional representatives, and chapter coordinators, all of whom are volunteers.

UOAC is funded through membership fees, proceeds from an annual appeal for funds, and through sponsorship of projects by manufacturers. Funding remains a priority, as services can only be delivered if revenues are stable.

(The above was abstracted from a more detailed history of UOA Inc. and UOAC. A link to the unabridged version can be found on the righthand side of this page.)

Detailed Version of our History:

Detailed Version of our History

The first recognized ostomy group began with patients from the Veterans Hospital, Valley Forge, Pennsylvania.

(From International Ostomy Association files)
‘In 1951, the patients of Ward Q and Ward T of New York City’s Mt. Sinai Hospital formed a support group. They were encouraged by two enlightened physicians, Dr. Albert J Lyons and Dr. George Schreiber, though their support of patient self help was controversial. Dr. Lyons later published an article in a medical journal about the mutual aid concept and the experience of “QT, New York”. Similar efforts began to be undertaken in other US cities. One such city was St. Paul, Minnesota, the home of Archie Vinitsky. In 1956 QT New York invited all groups to meet. Forty persons from ten groups attended. Some obstacles prevented serious consideration of a national group, but they agreed to maintain contact. They established two journals, one for colostomies and the other for ileostomies. The ileostomy Quarterly is the forerunner of UOA Inc. Ostomy Quarterly.

In 1960 QT New York again invited all known groups — this time over 400 persons attended, including some from Canada. Most of the program was devoted to personal patient concerns and the management of individual groups, but at the end of the day Archie Vinitsky came to the podium to inquire who was interested in working to form a national association. Eighteen people met that evening, and took the first steps toward what is now the United Ostomy Association Inc., with Archie Vinitsky and Lucille Anderson of Los Angeles co-chairing the coordination committee.

At a follow-up meeting in Detroit in 1961, while objectives and mechanics were being worked out, an impasse developed over funding. Again Archie stepped forward. He asked for one of the groups present to issue a call to all known groups and to host another meeting, a constituting convention. Who accepted the challenge but Norma Gill of Cleveland, Ohio, who started with the $36.00 collected from among the people in that room. It was there in 1962 that representatives of 28 groups from the US and Canada met and officially declared the United Ostomy Association to exist. Albert I Lyons was UOA’ s first medical advisor, and Larry Litwak served as its first President.

By 1950, the Los Angeles Chapter was formed, and, in 1956, representatives from local ostomy groups met in New York City, and unification was discussed. These representatives met again in 1960, and a steering committee was formed to start unification. The steering committee met one year later in Detroit, Michigan, to set plans for the constituting convention.

In September 1962, in the English Room of the Pick-Carter Hotel, 100 ostomates from 24 groups met in Cleveland, Ohio, for the Constituting Convention. From Canada were representatives from the Montreal, Quebec and London, Ontario groups. At this convention, bylaws were approved, officers and directors were elected, the need for a national publication was identified, the Sam Dubin Award was established and dues were set at 50 cents per member. (Dues were waived for the first year.) The charter deadline was set for four months for other existing groups, and by that deadline, 28 groups had affiliated.

By the end of this first year, UOA became incorporated in the state qf New York, the first edition of the Ostomy Quarterly magazine debuted; and eight additional groups became affiliated, bringing the total to 36. Dues were increased to 75 cents, which included a subscription to the 0stomy Quarterly magazine.

The first executive director was hired in 1965, with an office at 1111 Wilshire Boulevard, Los Angeles, California. Assessment for each member was raised to $1 as membership grew to 42 component groups.

In 1966, the Phoenix bird was adopted as the official logo of the United 0stomy Association, the regional program was established, with four regions in the United States and one in Canada. The Central Ohio Ileostomy Association hosted the first regional meeting in May of that year. Montreal, Quebec, hosted the 1967 UOA Annual Convention, the first held outside of the continental United States.

The approval of Cooperative Membership for foreign groups permitted four groups to become affiliated with UOA: Buenos Aires, Argentina: Dunedin, New Zealand; Farlov, Sweden; and Hants, England.

One of the most significant events that redirected the services of the United Ostomy Association occurred at the annual convention in Phoenix, Arizona, in 1968. A group of “stoma technicians” presented to the House of Delegates a proposal stating their intentions to form a new organization, known as the International Association of Enterostomal Therapy (IAET) (now Wound, Ostomy Care and Nursing Society). This organization would foster the training of technicians to provide more direct physical management support for the ostomy patient.

In 1969, several meetings were held with the American Cancer society to discuss cooperation between ACS and UOA. And during this year, UOA began to publish and distribute ostomy literature, including Colostomies: A Guide and Ostomy Review. Dues were now $2, and the number of affiliated groups totaled 72.

Donald P. Binder became the executive director in 1970, working out of the office at 1111 Wilshire Boulevard. The World Work Committee was started at the eighth annual UOA Conference (changed from convention to better identify the purpose of the meeting). Publications continued to be produced through the efforts of the Publications Committee.

Ileostomy: A Guide, UOA Guide brochure, Visitor Folder and Anatomical Drawing of types of ostomies were published in 1971.

Regional boundaries were realigned increasing the regions to a total of 15, increased again by four regions in the following year, bringing the total to 19.

The UOA story was spreading throughout 1972. The Regional Program increased in field activities, requiring additional personnel. Its structure was redesigned, and regions were realigned, changing from 19 to 12. This structure has proven most efficient and presently remains the same.

Also in 1973, a Professional Advisory Board was established, and eight more publications became available. The organizational meeting of the International Ostomy Association was held in Malmo, Sweden, May 16-19, 1974, and UOA became a charter member and offered assistance through payment of dues and organizational expertise.

On October 23, 1975, a documentary of Babe Didrikson was shown on CBS, with Susan Clark playing the role of Miss Didrikson, a sportswoman who continued her career as a golfer after having a colostomy. After the documentary, Miss Clark completed a 30-second video tape promoting UOA.

In 1977, Puerto Rico, Guam, the Yukon and the Northwest Territories were accepted for affiliation, further expanding UOA’s service area. IAET (International Association for Enterostomal Therapists) presented the UOA president with the “Ostomy Bill of Rights”.

Two of UOA’s most significant programs began in 1978. A scholarship fund for Enterostomal Therapy Education (now known as the Archie Vinitsky Scholarship Fund) was approved, and the UOA Youth Rally began its annual conference for young people who have had ostomy surgery. The first youth Rally was held in Boulder, Colorado.

UOA purchased its own building at 2001 W Beverly Boulevard in Los Angeles in 1979. The first Visitor Education Manual was completed and approved as a standard for visiting training by UOA, ACS and IAET. By the end of this decade, UOA membership reflected 554 affiliated chapters and approximately 40,458 members. Dues had increased to $4 per year.

In the meantime, in 1979, a steering committee meeting was held in Toronto, Ontario to look into the feasibility of a UOA Canada Association. It was attended by Lou Raffio (President, UOA), Lou Wray (Vice-President of UOA), Dave Metcalfe, Allan Porter, Genevieve Thompson, Dr. Kirkpatrick and Bette Yetman. There were three concerns that mainly initiated the idea:

  1. UOA Inc. felt they could not look after Canadian interest or advocacy in the same manner as Canadians.
  2. Canadians were experiencing customs problems when ordering publications.
  3. Canadians were unable to receive tax exempt receipts when donating to UOA Inc., therefore it was receiving few donations from Canada.

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Evolution of Governance of Ostomy Canada 1962 – present

Prepared by the Bylaws Committee January 5, 2017

Here is a brief history of the evolution of governance of Ostomy Canada and the efforts to keep that governance effective, including a synopsis of the governance review process and a summary of the recommendations of the GAWG.

GOVERNANCE STRUCTURE AND VOTING MEMBERSHIPS

  • Representatives of ostomy support groups in Montreal and London met with their American counterparts to write the constitution and bylaws for the United Ostomy Association (UOA).  They decided to incorporate as a federation of autonomous local ostomy support groups bound by affiliation agreements.
  • Voting Memberships – Individuals and chapters.  According to the 1981 UOA bylaws, National Council had two classes of voting members: individuals and affiliated member chapters (with a formula for weighted voting).
  • Voting Memberships UOAC incorporated under Canadian law, while remaining legally affiliated with UOA.  UOAC adopted the same structure of governance and conditions of membership as UOA.
  • Voting Memberships – Affiliated Chapters and satellites.  National Council amended the Bylaws to eliminate individual voting memberships and to change the formula for weighted voting so that each chapter or satellite, regardless of size, had a single vote.
  • Non-voting individual and corporate memberships.  National Council introduced four categories of non-voting memberships: national individual, international individual, health care professional and corporate partner.  Membership dues were required.
  • UOAC severed legal ties with UOA.
  • Voting Memberships – Affiliated Chapters only.  National Council amended the Bylaws to change the formula for weighted voting to favour larger chapters.  Voting rights for satellites were eliminated.
  • District Support Services (now Chapter Outreach).  National Council approved the District Support Services Manual, in which they delegated many of their responsibilities for governance to the Chair of District Support Services, in particular the responsibility for the affiliation agreements with Chapters and Satellites.
  • Non-voting outreach groups.  National Council approved the creation of SASO, the first of several outreach groups that could be part of the national organization without having to go through the process of formal affiliation and participation in governance.  Since then, other outreach groups have formed (20/40, Parents of Children with Ostomies, Youth Camp, Social Media Groups).  In most cases, no membership dues were required to participate.
  • Electronic meetings.  New technology allowed for monthly Board and Staff meetings with a minor cost for an annual subscription for the software.
  • Non-voting individual and corporate memberships.  In anticipation of the impending federal legislation and the proposed changes to the rights of members, non-voting individual memberships and dues were eliminated and replaced by national supporters and their donations.
  •  Conditions of Membership.  At the August 18, 2013 Board meeting, a motion to change the definition of member to an individual was approved by a vote of 5 against 2.  No conditions of membership were defined in the motion.  It was decided at the November 16, 2013 Board meeting to suspend any further decisions to change the membership structure until after receipt of the Certificate of Continuance from Industry Canada.
  • UOAC re-incorporated under new federal legislation as Ostomy Canada.
  • GAWG Mandate.  The President invited Chapter Presidents to appoint representatives to form the Governance Advisory Working Group (GAWG) with a mandate to make recommendations to improve the effectiveness of the governance structure of Ostomy Canada Society in light of the changes in the strategic and legal environments, especially with the implementation of the Canada Not-for-profit Corporations Act.  Ten Chapters participated in preparing the final report.
  • Non-voting peer support groups.  Based on the analysis of the GAWG, it was recognized that not all ostomy support groups are interested in governance, and based on the popularity of other non-voting outreach groups, the Board introduced the concept of the community peer support group with no responsibilities for governance.
  • Regional Directors.  Based on the analysis of the GAWG, the size of the Board was increased to allow for regional representation.  These regional directors are taking over some of the duties of the duties of the COSS Administrator.  Regional directors are able to meet regularly with their Chapters by electronic means without incurring travel costs.  This decision partially reversed the 2000 decision to delegate responsibilities for governance to COSS.
  • GAWG Revised Mandate.  The GAWG concluded that National Council was no longer effective and could not be fixed.  The GAWG recommended that the path to effective governance required changing the membership of the governing body.  National Council accepted the Governance Advisory Working Group (GAWG) Report Phase One by unanimous vote.  National Council revised the mandate of the GAWG to examine alternatives (GAWG Phase Two Step One) and to draft a transition plan to change the governing body of Ostomy Canada (GAWG Phase Two Final Report).  Participation increased to 10 Chapters representing about half of the eligible votes in National Council.
  • GAWG Final Report Implementation.  The Governance Advisory Working Group (GAWG) Report Phase Two, which examined alternative governing bodies, was circulated to all Member Chapters for discussion and feedback.  National Council decided more time was needed to build a consensus for change.  Several Chapters took advantage of the additional time to submit their thoughts.
  • Participation at meetings by electronic means.  Rules and procedures are being introduced to allow for simultaneous in–person and electronic meetings.  This will allow greater participation at meetings of National Council.  This makes it easier and less expensive for delegates to remain engaged in the decision-making process.
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