Last Friday a major disability sector reform was announced. It is a massive reform and is the result of decades of tireless campaigning and advocacy by the disability community.

In a nutshell, the reform is this; we are getting an independent Ministry for Disabled People. It will be standalone and separate from Ministry of Social Development (MSD) and Ministry of Health (MoH). It is a HUGE win for the disability community.

Now, I’m not getting ready to throw a parade just yet, but this reform is extremely welcome and overdue news. It has the potential to create meaningful and genuine changes for the disability community. The 2020 Health and Disability System Review recognised that the system that’s currently in place is fundamentally failing disabled people. And yet, the review fell into the same trap of lumping disability in with the health system or MSD.

As most disabled people and their whānau would probably agree, disability is a standalone issue that links in with other sectors BUT is not solely a medicalised issue. There was a lot of feedback on the review findings, and it appears that feedback was taken on board.

One of the biggest issues we face in the disability community is work being done about us, but without us. In fact, that was one of the criticisms of the Health and Disability System Review – none of the board members were disabled.

This announcement is promising news. There are lots of changes and the details will be hammered out over the coming months. What we currently do know is this:

• The Ministry for Disabled people will be established by the 1st of July 2022.
• It’s two primary functions are delivering and developing policy and developing and delivering support services.
• By being an independent agency, the Ministry will go some way to ensuring that disability is seen in a holistic way. Disability Support Services will fall under the responsibility of the new Ministry, shifting away from MOH. This is a big win for the disability community!
• The Government has committed to a full national roll out of Enabling Good Lives (EGL).
• New Accessibility Legislation was also announced which intends to address barriers that disabled people face in their daily lives. (I will be covering this in more depth when submissions are open, but in the mean time I encourage you to look at the fantastic work that the Access Alliance – of which we are a member – have been doing in this space)

Now, here’s where the jaded and cynical part of me comes out. Whilst this is all a fantastic start and very overdue, if we don’t start properly collecting data on disabled people, all the good intentions in this reform will fall flat. The problem lies with the way StatsNZ define disability in their data on disabled people. It’s called the Washington Group Short Set (WGSS) and it has a ridiculously high disability threshold. I am a disabled 27-year-old woman who lives with multiple progressive autoimmune conditions. Disability is my reality. And yet, under the WGSS, I am NOT considered a disabled person. The WGSS excludes not only people like me, but is ineffective when it comes to capturing neurodiversity, chronic illness and mental health related disability. So, what this means is that we are undercounting the number of disabled people in Aotearoa.

For these reforms to truly be transformative, not only do they have to be guided by disabled people (especially tāngata whaikaha – disabled Māori), but we also need to fundamentally change the way we are collecting disability data. All the reform in the world isn’t going to work if we are working with incorrect numbers.

With that said, I am incredibly happy and excited with the announcements. They are well overdue, and I am glad to have been even a small part of the push to get to this point. There’s a lot of potential and a very long way to go, but I do believe we can get there if we get to mould this ministry and legislation to meet our needs.

When these issues are open for consultation and submissions, I urge you all to give your feedback, because that’s how we are going to make this work. (We will keep you posted on these opportunities!) It must be co-designed. We’ve been given an opportunity to make significant changes, let’s make the most of it.