Welcome to e-include, the e-journal of Inclusion Europe.
Inclusion Europe was part of a study visit to Canada.
This study visit explained how people with disabilities get support when making decisions in Canada.
Participants got to know the laws and families of people with disabilities.
From 11 to 16 April 2010, Inclusion Europe, in partnership with BACCL, the British Columbia Association for Community Living (www.bcacl.org) organised a study visit on legal capacity.
The participants, representatives from Inclusion Europe and its members as well as one representative from the European Disability Forum (EDF) spent five days looking in detail at the supported decision-making model in British Colombia and how it works in practice. The study visit gave participants the opportunity to speak and exchange views with different stake-holders.
During the first day of the visit, the participants were welcomed by Faith Bodnar, the Director of BCACL, and by Michael Bach, the Executive Vice-President of CACL, the Canadian Association for Community Living. Together they gave an overview of the situation in British Columbia and in other provinces of Canada in regards to legal capacity. The participants were acquainted with the background situation in Canada from a historical perspective: how long did it take to have the legislation put in place – how did they work in coalition with other groups concerned by the reform of guardianship laws – how did they lobby for new legislation. Following this overview, participants went to NIDUS, Personal Planning Resource Centre and Registry (www.nidus.ca). The participants were acquainted with the legislation on legal capacity and the different acts in place and what they cover. Joanne Taylor, the Executive Director, included in her presentation and discussion the legislative reform process and the amendments adopted in the past 10 years to understand the process of implementation of the model of supported decision-making. On the occasion of the 10th anniversary of representation Agreements, Nidus published an analysis of nearly 1000 representation agreements.
The staff of NIDUS then explained how representation agreements are written, what types of agreement exist and how NIDUS supports people and families who are entering into a representation agreement. Concrete cases were used to illustrate this process. Nidus also published examples of best practices: the story of Mary, a lady with dementia and the story of Heather, who has been a representative in three representation agreements.
Finally, Joanne Taylor drew conclusions of their long experiences highlighting the successes and challenges.
On Tuesday, participants went into the community and met with five parents who represent their son or daughter with severe intellectual disabilities or combined disabilities. They shared with participants why they chose this form of support, how they started the representation agreement, how they use it... Very interestingly, most families have not only a representation agreement with their family member with a disability but also with a family member with age-related diseases such as Alzheimer’s. Therefore, it was very interesting to hear how supported decision-making works in practice for different groups. Listening to parents, participants discovered that a wide range of support and arrangements for people with intellectual disabilities are available in British Columbia. The representation agreement is only one of them. However, the families we met have really been able, thanks to these different services and supports, to build a community network around their son or daughter with severe disabilities.
On Wednesday, the participants continued their tour of stake-holders and met with three lawyers to discuss their perspective on entering into agreements with people who have a representation agreement. Very interesting was the contribution of Kimberly Ayzan from the Office of the Public Guardian and Trustee from British Columbia (www.trustee.bc.ca) , who offered a very progressive point of view on legal capacity of people with intellectual disabilities and clearly stated that they encourage the arrangement of representation agreements for people with intellectual disabilities rather than more restrictive measures, which, according to her experience are not necessary when there is no high amount of assets or properties. She also stated that they work in close relations with the organisations of and for people with disabilities.
Finally, the participants met with Jack Styan, the Executive Director of PLAN, Planned Lifetime Advocacy network (http://www.plan.ca) , who explained the Registered Disability Savings Plan and other services to people with disabilities and their families to support them in developing personal future plans, for their lives when their parents will no longer be there. The participants were introduced to these services, their history, how they are currently working and discussed with Jack Styan the challenges and successes of these services. The core of PLAN's work is nurturing and maintaining networks of caring relationships around a person. PLAN provides many resources to inspire and support personal networks of care. PLAN also offers resources around Supported Decision Making such as Supported Decision Making seminars to discuss the ideas and practicalities of supported decision-making, and assists BC residents in completing a Representation Agreement. Finally, PLAN offers a number of seminars and resources to assist families in securing the financial future of a relative with intellectual disabilities and in avoiding well-intentioned financial gifts or estate resulting in a loss of disability benefits. Participants were introduced to the new Registered Disability Savings Plan (RDSP), which is a powerful long-term savings tool.
All these services are very important with regards to the representation Agreement in British Columbia and more generally with the model of supported decision-making because they contribute to the creation of a community network and a solid future for people with intellectual disabilities, and especially for people with severe and profound disabilities.
Finally, the Study Visit was concluded by the International Forum on Legal Capacity and Supported Decision Making, organised by BCACL in partnership with Inclusion International and Inclusion Europe, which gathered more than 80 participants from all over Canada. The Forum was a great opportunity not only to learn more about the situation in British Columbia but also to hear about the challenges in other provinces of Canada, like Alberta, Manitoba, Ontario. Self-advocates, family members, legal professionals, public guardians, services providers and NGOs shared their experiences, their successes but also their hopes.
The participants left Canada with a lot of ideas and inspiration, as they could see that Yes, it has worked there for 10 years! However, the road is long and sometimes difficult, but the commitment of our partners in Canada and the satisfaction of stake-holders with the Representation Agreement has given all participants a lot of strength to continue fighting in their own countries!