We wanted to make sure we had the voice of someone with a Learning Disability included in the kōrero about the new Ministry for Disabled People and the roll out of Enabling Good Lives. I sat down, via Zoom, with Shane MacInroe.
Shane has been involved with Enabling Good Lives, the co-design of the MidCentral prototype and is a representative of People First New Zealand Inc. Ngā Tāngata Tuatahi. Shane has been involved with Enabling Good Lives in Christchurch since 2013 when he went to see what it was all about. In 2016 he became fully involved and in 2018 he was appointed to the National Enabling Good Lives Leadership Group. It’s fair to say Shane is an expert in this area and as he says, “busy enough to have a full-time job.”
I started by asking Shane what he thought of the announcements Minister Sepuloni and Minister Little did in October. We talked about how it was important to acknowledge people who have been doing the work for many years asking for an independent Ministry. Shane was excited about the announcement saying, “It felt like Christmas… If we get both of them [the new Ministry and the rollout of Enabling Good Lives] right it is going to be a game-changer for New Zealand.” We both agreed that due to COVID-19 we missed gathering together with people from the community to celebrate.
I’d like to see people with a learning disability involved in the design and every stage of the pathway, otherwise it’s bringing people with a learning disability halfway or at the end and that would not be right.
When talking about the new Ministry, Shane raised some good points, “I’d like to see the new Ministry something like Worksafe. If something goes wrong it has the authority to look into things and make recommendations.” Shane told me he was ‘busy’ that day when I asked him if he was going to apply for the lead role of the establishment unit, but is keen to see disabled people involved, “I don’t want the roles to be tokenistic, but I would like to see disabled people getting the roles if they have the same qualifications as a person who is not disabled.”
Shane also told me that a concern he has is that other Ministries might not focus on including disabled people in their work anymore and just expect that the new ministry does that, “Otherwise it will be some sort of advisory Ministry…all other government agencies should still have the responsibility to consider the Enabling Good Lives principles in legislation.”
There was a lot of talk about the name of the new Ministry on the day of the announcement, but Shane is quite happy with it, “as long as there is a Te reo Māori name with it.”
We both agreed that often people with a learning disability are missed out in conversations around change and how it impacts them. This changed our conversation to talking about what needs to happen to ensure all people with a learning disability were aware and could be involved in the roll out of Enabling Good Lives. “I’d like to see people with a learning disability involved in the design and every stage of the pathway, otherwise it’s bringing people with a learning disability halfway or at the end and that would not be right.” Shane also acknowledges that the process needs to involve other people with learning disabilities, not just the same ones as before, “Don’t just call on the people with a learning disability who have been involved with Enabling Good Lives. I don’t mind if I am not involved as I have been involved for many years now.”
The next challenge we talked about is how to get these voices at the table, “Definitely the Disabled Persons Organisations and the different core groups around the country, but we need to get outside of the DPOs as well. Do we tap into schools? Maybe. Do we tap into residential care settings? Most definitely.” The core groups have been set up around the country to contribute into the local Enabling Good Lives Leadership Groups. There are often three groups for disabled people, whānau and providers. To ensure disabled people are electing strong representatives Shane said it’s important these groups are set up and well-advertised in advance of the leadership groups starting in the different areas.
Our final topic we covered was the length of time for Enabling Good Lives to roll out nationwide, “I have been getting a lot of people emailing me from all over the country wanting to know how they can access Enabling Good Lives right now. It’s quite exciting but also quite sad that so many people want it right now, not in six months’ time.” To help stop this anxiety Shane agreed that messaging from the government the timings of the roll out would be good, “I think it would calm a lot of people if they knew when it was coming to each region. It would also provide clarification for a lot of people between System Transformation and Enabling Good Lives.”
Thank you Shane for giving up your time to share your thoughts, expertise, and experience with us.
For more information about the new Ministry and roll out of Enabling Good Lives click here.