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Claiming Full Citizenship

The international conference, Claiming Full Citizenship, October 15-17, 2015 in Vancouver, BC, focused on self determination, personalization, and individualized funding. Rhea Boysen (A! Interim Manager) and I (Brenda MacLauchlan, A! Communications Coordinator and Parent) represented Astonished! at the conference and presented one of the sessions.

How do you summarize the experience of an international conference with 550 participants from regions as diverse as South Korea, New Zealand, Australia, the United Kingdom, Finland, the United States of America, and Canada? Rhea and I (Brenda) are each writing blog posts about this conference that will give you some ‘snap shots’ of our experience.

The stated learning objectives were:

  • Evaluate the progress in achieving the vision set out in the Seattle 2000 Declaration on Self Determination and Individualized Funding
  • Share lessons learned on the implementation of self-determination, personalization, individualized funding and supported decision making
  • Promote cross national, cross cultural and cross sector dialogue
  • Share best practices
  • Support the realization of the UN Convention of the Rights of Persons with Disabilities through promoting the effective global implementation of self-determination, personalization and individualized funding
  • Create a roadmap for the effective implementation of self-determination, personalization, individualized funding and supported decision making
  • Foster cooperative networks across jurisdictions, sectors and interests that will continue after the conference

Snap shot 1-The conference took place in a large, busy, downtown hotel in Vancouver. I was rather overwhelmed by the crowds. Within fifteen minutes of arriving at the conference I was engaged in a conversation with June Arthy and Bronwyn Moloney from Queenland Australia. They came to the conference to tell people their story about people labelled ‘Too Challenging’ or ‘Too Complex’ regaining their place in community. June (I guessed she was in her sixth decade) told me she had lived almost all of her life in an institution for people with intellectual disAbilities. She was delighted to tell me, with the support of a local not-for profit, she has been living in her own home for the last decade. I was inspired and no longer overwhelmed.

Snap shot 2 –The big attraction for me in attending this conference was to learn more about how Individualized Funding is managed in other places. Individualized Funding refers to direct funding to people with disAbilities so they can purchase services according to their needs. As a parent and as a member of Astonished! I have known firsthand the challenges of Individualized Funding in Saskatchewan. I hope we might learn from others like: Manitoba’s In the Company of Friends, a single window to access services, rather than being separated into service categories by diagnosis as we are in Saskatchewan; and Ontario’s Families for a Secure Future and the Ontario Independent Facilitation Network ,independent facilitators that assist individuals with the Individualized Funding process.

Snap shot 3 – This was the first ever international conference that brought together people living with disAbilities and people living with dementia, and families, professional support people, and academics from both of these communities. At first I wondered about the wisdom of putting together disAbility and dementia but I found it broadened the focus and helped us to be more aware of service gaps and attitudinal challenges.

Pascal Erickson – Rocking with Nickelback

Pascal Erickson  – Just Saying…….
I graduated from Campbell Collegiate in 2005. Since April 12th 2007 I have been conducting my life from Wascana Rehabilitation Centre in Regina. People say I am an excellent conductor, organizing and scheduling things I want in my life. I love music, especially country and rock. My dad and I are regulars at the Craven Country Music Jamboree. Recently, my sister Jennifer and I rocked at the Nickelback concert in Saskatoon (photo of Jennifer and Pascal).

Some of my favourite things are chocolate, photography, painting, reading medical text books, researching on the web, visiting with friends, Camp Easter Seal, playing cribbage, Astonished! events, and the Saskatchewan Roughriders. I have a serious case of ‘Rider Pride’. I keep connected to my family and friends, my music, and my Internet research though my iPad and iPhone. They are always on my chair tray.

Some of my favourite Astonished! events include the Halloween Howl and the annual Fundraising event. Both have great food, drink, and music, all things I love.

Because I spend a long time in my power chair, and this can be uncomfortable, my perfect day begins between 9:30 and 10:00 with breakfast in bed. With the assistance of Wascana staff I get ready for my day. I need this support but adjusting to the lack of privacy in a large institution can be challenging. I find it frustrating when staff and other residents think they know everything about me.

I am currently working with the recreation coordinator at Wascana to come up with a volunteer placement that would bring together several of my interests.

I often say ‘just saying’ and several people in the Astonished!  community have adopted this phrase.