I am here3 min read
In November 2012, we released research into the lived experience of disabled people with high and complex support needs called “I am here” The Article 19 Project – Finding a place for the life stories of disabled people.
Our concern was that people with high and complex support needs were at the most risk of isolation and segregation.
The name of the project was based on Article 19 of the Convention on the Rights of Persons with Disabilities. Article 19 of the Convention recognises the right of disabled people to choose where they live and with whom they live with, and to live in the community with choices equal to others.
In the research, twelve people with high and complex support needs told their story. They told us, they were denied the fundamental freedom to choose where they live and who they live with and to be included in the community. This was due to a ‘silo’ approach to service delivery, including the inadequate and inflexible support offered by support agencies, government policies and practices that disadvantaged disabled people, the physical inaccessibility of New Zealand housing, a range of environmental and attitudinal barriers and poverty.
The stories of the 12 research participants indicated that the majority of participants did not feel that they had the right to choose their place of residence and where and with whom they lived. They were not able to access the support required to live in and be included in their community. They were absent from the worlds of employment and education, inclusive sporting, recreation, arts, culture and politics.
Not having a presence in the world of employment, education or inclusive environments and activities also denied the research participants access to the social roles of workmates, colleagues, peers, friends, neighbours and citizens.
Their stories are a clear challenge. They are a challenge to our organisation, to the sector, a challenge to the government and a challenge to the community.
This challenge comes from a group of people historically denied a voice.
The challenge is; hear us, see us and include us.
How will we answer?
We believe firmly in the right of everyone to be included in society. As an organisation we all need to work to hear, see and include people with high and complex support needs. We also need to pressure government and policy makers, funders, the sector and the community to do the same.
We also need to ally with and support the voice of disabled people to bring about the change necessary to ensure disabled peoples rights are acknowledged and respected.
We have developed an advocacy framework to bring about change, but we need help. To bring about real change requires action from the government, service providers and the community. We all need to work together.
I encourage everyone to read the research or the summary and to think about other ways you could help bring about change. Please leave your comments and ideas about how we can all work together to effect the change necessary. We also have an email petition at the bottom of this page, which I encourage you to sign.
Research Initiator and Sponsor