Mary Beth Wighton is a board member of the Ontario Dementia Advisory Group, a group of people living with dementia in Ontario, Canada that was formed in fall 2014 with the purpose of influencing policies, practices, and people to ensure that people living with dementia are included in every decision that affects their lives. Their website is http://www.odag.ca/. Here Mary Beth recounts the events leading up to ODAG’s presentation to the Senate Committee studying issues of dementia in Canadian society, and the day of their groundbreaking presentation.

Copyright 2016 Mary Beth Wighton

ODAG SenateAfter something of great significance has occurred in your life, it can take a long time to mull over the impact it has on you – and potentially the world.

On April 11th of this year, on behalf of Ontario Dementia Advisory Group (ODAG), I contacted the Clerk for the Standing Senate Committee on Social Affairs, Science and Technology. There is a study on dementia in Canadian Society. Part of the letter stated:

“Developing a cure must be the long-term goal of dementia policy making. But supporting and empowering people with dementia and their families should equally be an important policy goal. It is critical that government uses the best available evidence to design appropriate policies that affect people living with dementia.

The Standing Senate Committee on Social Affairs, Science and Technology has been authorized to examine and report on the issue of dementia in our society. Its website shows 14 Witnesses have or are scheduled to provide testimony. The glaring gap in the witness list is a person living with dementia representing the key stakeholder group.

The time is now to include people with dementia in contributing directly to the examination of and reporting on the issue of dementia in our society. Who better to learn from than people with dementia who live the experience of dementia every day, who utilize programs and services, and who are citizens within Canadian Society?”

Much to our delight, on April 22nd, I received the following response:

“This email is being sent to advise you that the committee would like to invite you to participate in its public hearings on this study. You are being asked to participate with a panel of 1 or 2 other organizations/individuals by making a brief statement (no more than 7 minutes) followed by a question and answer session with committee members. This session will last approximately 1.5 hrs.”

I could feel my heart soar as our hope became a reality. ODAG would have the opportunity to speak for 747,000 Canadians who have dementia. We would be in front of Canada’s policy makers to influence them on what people with dementia truly need.

Our next step was to request accommodation according to the Convention on the Rights of People with Disabilities (CRPD) to enable us to take part in our country’s decision-making. The international community of people with dementia has recently started to use the strategy of demanding our legal rights described by the CRPD. Canada is listening and responded as I hoped it would.

The Senate made the following accommodations:

  1. I would participate via videoconferencing.
  2. Three Board Members of ODAG would appear in person in front of the Senate in Ottawa. Normally, only 1 or 2 from an organization can provide evidence at one time. For ODAG, they accommodated the request to have 4 members present at one time.
  3. We had a total of 10 minutes as a group for an opening statement. Normally, it is 7 minutes.
  4. All 4 ODAG members could answer questions from the senators; not just 1 or 2 members.

ODAG already felt victorious with asking for and receiving accommodation as it applies to CRPD.

The entire ODAG team worked extremely hard in preparing for our presentation to the Senate. This involved developing an Opening Statement. It was decided I would read it to the Senate. In addition, we created a Brief to accompany our Witness statement. We came up with possible questions we would receive and strategized the best answers for them. Each Senate member’s profile was reviewed in an attempt to best understand individual priorities and who were the key decision influencers.

It truly felt like all organizations and people who knew ODAG and worked with us was rallying behind. Offers of all kinds of support came pouring in. We had the assistance of Alzheimer Societies helping us in Ottawa.

The core team consisted of:

ODAG:

  • Myself;
  • Bea Kraayenhof;
  • Bill Heinbien; and
  • Phyllis Fehr.

Strategic Partners:

  • Laura Bowley, President, Mindset Center for Living with Dementia;
  • Lisa Loiselle, Assistant Director, Murray Alzheimer Research & Education Program (MAREP);
  • Nancy Rushford, Director, Alzheimer Society of Ontario;
  • David Webster, Program Manager – Dementia Friendly Communities, Alzheimer Society of Ontario; and
  • Elaine Wiersma, Associate Professor, Centre for Education and Research on Aging and Health.

Our final ODAG meeting prior to the Senate was wonderful. We laughed, clapped and congratulated ourselves for our achievements to date. In particular, having the Senate make accommodations for us according to the CRPD was an international victory for people with dementia.

Wednesday, May 18th 2016 finally arrived. My ODAG counterparts had traveled to Ottawa and had arrived at the Victoria Building, just across from the Parliament of Canada. It houses the offices of parliamentarians, mostly members of the Canadian Senate.

The technical team set me up to video-conference the meeting. As I waited nervously from my desk in Southampton, I could see the senators filing into the meeting room. It was truly a special moment in my life.

With an introduction by the Chair, I began to read ODAG’s Opening Statement. I spoke for about 8.5 minutes – just shy of the 10 minutes that had been granted to us. For the next two hours the senators asked their important questions from us to better understand what it is like with dementia in Canada. They looked to us for our opinions and warmly encouraged us by their dialog and tone of voice.

As each ODAG member spoke to their own experience, it became obvious how we were four people who lived very differently lives; had different experiences and support; and yet, came together as a team to implore the senators on the need for the Canadian government to create a national dementia strategy and to recognize the legal rights of those with dementia that are currently being denied.

When the Chair convened our meeting an hour longer than scheduled, ODAG knew we had made history. And what an undescribable feeling it is. I thank the many individuals who made this happen. It is something I will never forget.

I suppose you are wondering the impact we had on the Senate. The Clerk says: “I just wanted to touch base to once again thank you all for making extra efforts to participate in the Senate Social Affairs committee hearings yesterday. Even today the Senators were talking about how valuable they found your testimony to be.”

Why don’t you take a look at the video yourself:

http://www.parl.gc.ca/SenCommitteeBusiness/Notice.aspx? parl=42&ses=1&comm_id=1047&Language=E&meeting_id=426813