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Community of practice in deafblindness Charter

The Community of Practice (COP) in Deafblindness was born in 2016 out of an innovative project to support the program stakeholders in deafblindness, a joint program INLB-IRD (Institut Nazareth et Louis-Braille – Institut Raymond Dewar), respectively facilities of the CISSS of Montérégie-Centre and the CIUSSS of the Centre-Sud-de-l’Île-de-Montréal. DeafBlind Ontario Services joins the CoP in Deafblindness in 2018 to collaborate for an English version of the platform.

This Charter sets out the definitions of deafblindness , the definition of a CoP, the mission of the community, the profile of its members and the conditions for its development, so that its members are jointly responsible for its success. It is inspired by the Charter of the CoP on veille en sante et services sociaux du Quebec[1] as well as from that of the Meta Community of Practice on health. The updated Charter is subject to the approval of the members.

1. Definitions of Deafblindness

1.1 Per DeafBlind International

The term deafblindness describes a condition that combines in varying degrees both hearing and visual impairment. Two sensory impairments multiply and intensify the impact of each other creating a severe disability which is different and unique.

All people who are deafblind experience problems with communication, access to information and mobility. However, their specific needs vary enormously according to age, onset and type of deafblindness.

People who are deafblind are unable to use one sense to fully compensate for the impairment of the other. Thus they will require services which are different from those designed exclusively for either people who are blind or people who are deaf.

Congentinal Deafblindness is a description applied to people who are born with both hearing and visual impairments or became deafblind before developing language. A large majority of this population also have diverse degrees of intellectual impairment.

Acquired deafblindness applies to people who are blind and develop a hearing impairment after developing language; people who were hearing impaired and later developed a vision loss; and people who were sighted and hearing but have developed vision and hearing impairments from any number of causes including accident and old age[2].

1.2 Per Deafblind Program at INLB/IRD

“Deafblindness is a unique condition combining visual and hearing disabilities in the same person. These deficiencies can be severe to total for one or the other or both at the same time. Deafblindness is above all an acquired condition but can also be congenital. The impact of acquired deafblindness affect the lifestyle of the deaf-blind person related to access to information, communication, travel, activities of daily life and social relationships. Congenital deafblindness is frequently accompanied by other disabilities and affects all aspects of the development of the child deaf-blind[3].”

2. Definition of a Community of Practice

A community of practice is a “…group of persons who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise in this area by interacting on an ongoing basis. They are held together by a common interest in a certain area, and are driven by a desire and need to share problems, achievements, insights, tools and best practices. CoP members deepen their knowledge by interacting on an ongoing basis and will, over time, develop a set of shared practices[4].”

3. Mission

Holders of a rare expertise in deafblindness and concerned about the transfer of knowledge, the members of the CoP in deafblindness aim to: 1) gather knowledge about deafblindness emanating from members themselves and the scientific literature on a virtual platform; 2) share this knowledge or  co-construct new knowledge; (3) interact in face-to-face or virtual mode and 4) contribute to the peer support.

4. Members of the Community of Practice

4.1 Characteristics and Profile

Members are professional or technicians[5] from the health or social services, teachers, researchers, managers and students working in the field of deafblindness from  organizations dedicated to rehabilitation , University or school or research centres.

They are driven by a desire of sharing and transfer of knowledge based on evidence-based practice or data in their field of activity.

4.2 Integration of the new members

After reading the Charter available on the page dedicated to the COP on INLB website, (URL to add address), the candidate has the ability to apply by e-mail to the Admissions Committee that will communicate with him/her.

5.  Members benefits:

  • Free membership;
  • Access to the profile of the members;
  • Access to the bibliographic references specialized in deafblindness;
  • Quarterly newsletter;
  • Participation in activities face-to-face or virtually.

6. Commitment of the members to the success of the Community of Practice

Each Member undertakes to:

  • Share knowledge about deafblindness.
  • Accept the principles set out in this Charter and sign it at the time of its accession.
  • Participate actively and constructively in the community exchanges.
  • Communicate respectfully with others.
  • Sign up to the platform when joining and maintain his/her personal record in the book of members of the CoP, all by sharing this page with others.
  • Not to transmit its ID or password for the platform.

7. Roles and functioning

The INLB provides leadership of the CoP and hosts its platform.

The directions and actions of the community are from operating by consensus and the commitment of its members.

7.1 Collaboration platform

This platform centralizes the profiles of members, identifies knowledge published in deafblindness and allows members to interact from a perspective of sharing and co-construction of knowledge.

The chosen platform is WordPress. It has been customized by the Institute Nazareth and Louis-Braille to make it consistent for: 1) the needs of members; (2) for the anticipated use in the framework of the activities of the CoP as well as 3) to meet accessibility criteria.

A tutorial in the form of questions and answers explaining the features is accessible from the homepage of the platform.

7.2 Sharing of Information

7.2.1 Documents made available to everyone by default

  • These are from bibliographic references listing studies or presentations published in respect of the Copyright Act. Unless otherwise stated, these references are usable without restriction.
  • Members profile sheets are for the exclusive use of the members of the CoP.

7.2.2 Documents shared by a member or group of members

  • Documents shared by a member or group of members on the platform of the CoP are in PDF and refer to their author (s).
  • It is the responsibility of the Member who shares a document for use and dissemination that can be made. To do this, he/she will be able to affix the appropriate Creative Commons license.
  • It is the responsibility of other members to respect the indications of the contributing Member in the use and dissemination of such document as specified in the chosen Creative Commons license.
  • Members are required to abide by the Copyright Act.
  • When a Member wishes to use in whole or in part, a text or a document shared by another Member, he/she shall, unless the use is free of right, request permission in writing from the author, keep the response received and duly identify the source in its document.

7.2.3 Produced documents and knowledge co-constructed by members as part of the COP

  • These documents are produced using a template containing the visual identity of the CoP.
  • The CoP members decide on the status of use and dissemination of a document or knowledge co-produced in the context of activities of the community and make it clear.
  • A member of the CoP (and the Organization to which it is attached) should never have the exclusive right to use or disseminate a document produced with contributions from several members or on behalf of the community.

7.3 Communications

7.3.1 Internal communications

  • Communications and document sharing with all of the members are done primarily using the collaborative platform.
  • A quarterly newsletter is distributed to all the members.

7.3.2 External communications

  • General information about the CoP and external requests should be directed to the moderator who will follow-up.
  • Special requests (projects, solicitation of members) from outside must be submitted to all the members in a meeting or through electronic communications.
  • The visual identity of the CoP must be used for any official communication from the community as well as on the documents produced by the community.

7.4 Meetings

  • The frequency of meetings between members of the CoP depend on the programming of activities. They take place either in face-to-face mode, or in virtual mode, or in combined mode.

8. Evaluation of the Community of Practice

With a view to continuous improvement, the community of practice is committed to be assessed periodically to ensure that it meets the evolving needs of its members.

[1] Community of practice of sleep in health and social services of Quebec. (2011). Charter of collaboration.

[2] DeafBlind International Guidelines on Best Practice for Service Provision to DeafBlind People.

[3] Gilles Lefebvre, program Deafblind IRD-INLB, 2016

[4] Wenger et al., 2002

[5] Including the Intervenors, trained people that promote social participation of users making them accessible Visual and sound information.