On Wednesday I attended the Mid Central System Transformation hui. This hui was held as an opportunity for disabled people/people with disability/people with impairments/etc (use your preferred terminology/label) to have our input into “transforming” the way Disability Support Services are delivered and accessed.

I went into this hui somewhat skeptical; as someone with lived experience of disability, “System Transformation” in my head translated to “we’re going to tinker with an already broken system and make it even more difficult to access”. I was feeling like this was just another attempt by government to gain buy-in from a disadvantaged sector of society during an election year. I’d heard about the “co-design” process where people (or whanau) with impairments/disabilities/limitations (again use your preferred terminology/label) had input into the design of the new systems; being my cynical self I was wondering if this was another tokenistic gesture and that the opinions of those with disabilities/limitations/impairments/etc (again use the term that works for you) would get heard and our opinions determining our own care would again be disregarded.

As we did a round of introductions of those in attendance, my heart broke for the families of those with high and complex needs who are not getting their needs met. Restrictive criteria, inappropriate care/programs/education and continuity of care concerns were expressed by many of those in attendance. A lot of anger at a very broken system was expressed.

The members of the co-design group were really honest in their responses to questions such as; how successful this project was likely to be? Is the co-design process a token gesture? and other issues such as benefit/service assessment. Thank you to Ester, Jade, Gerri, Helena, Tina and Laurence for your honesty and your commitment to making real change.

After listening to the team and finding out that the co-design team have a chance of actually having our collective voices heard, I still feel a bit cynical but prepared to give this process a chance. It was acknowledged that part of change is also a commitment to education of the general population around integration which I look forward to. I’m all about education, adaption and achievement.

Yes our system is broken, yes we are angry about it; now is the time to collectively work together towards change. We are at the start of a long process. We can do this, we need to do this so all of our community can reach their full potential.

I’ll be attending the next hui to try and help with this change, what are you going to do?

If you have stories, comments or questions please drop me a comment below and let’s start having conversations on how to become more inclusive.

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