This blog has been written by Megan Spindler-Smith who is People with Disability Australia’s Deputy CEO. Megan commenced in the role on Monday 24 June.
When it comes to a new gig, the rule should be that the first week is never what you expect. As a disabled person, it has been a dream of mine to be not only part of but have the opportunity to lead within an organisation that can have a direct impact on our lives, our choices and inclusion in society. So, to get this gig was officially a dream moment.
This role means actioning the principle “Nothing About Us Without Us” and that is exciting. So, with that positive pressure swelling in me, I did come into my first week with a plan, a set of ideas of what I wanted to accomplish, but hey best laid plans….
Disabled People’s Organisations (DPOs), like ours, play an important role in surfacing, engaging with and ensuring that our needs and wants are not just known but acted upon. I know as a disabled person I do not and cannot be the holder of all OUR experiences, however this role provides me access to a privilege, of being a public person for our community with access to decision makers and those with the ability to ensure change for us provides me. A privilege I cannot and will not take lightly.
What a week to make that very clear to me! The NDIS Amendment Bill ‘Getting the NDIS Back on Track No. 1’ was in the Senate this week with several amendments to the legislation tabled. It was a bit of a jump into the fray moment for me to get my head around it all, the machinations of how policy legislation is made and what is important to our community, PWDA’s Board and our Members. We (PWDA) have been very clear that for us and our members the Bill in its current form is not something that any of us feel is viable for our community and it is imperative that we as people with disability are not just in the room but leading this reform. I got to meet with and hear from other disability representative organisations around their views and insights. As seems to be my habit, I attended a Board meeting in my first week clarifying PWDA’s next steps around the Bill, meeting some of our dedicated and engaging Board members and listening to their considerations and the importance placed on ensuring that not just some but all people with disability are at the heart of decisions. This was a brief but very impactful part of my week, it makes such sense why our Board choose to take on the additional pressure to represent us.
All of this took place whilst getting my head into a new role, attempting to understand the new work environment, and getting to know my colleagues. I am learning how fast/whirlwind policy and legislation making can be. It felt sometimes this week that each minute there were new things to consider and engage with. Did I understand it all? Absolutely not, and it definitely gave me moments where I was feeling a tad lost in the political and legislative jargon – even Googling what things mean mid-way through conversations. Navigating the differences between what information needs to go into a Bill versus, an explanatory note, versus the Rules and how its placing can impact us has been occasionally ‘brain filling’.
What I do know is that we need to keep ensuring that OUR priorities as a community are at the core of any NDIS legislation or reform. For me personally I have plenty of priorities, however I would say my top three are:
- Ensuring that co-design is not just a nice thing to have but is at the core of any NDIS legislation. Nothing About Us Without Us ALL.
- Having a Whole of Person approach to not just our needs assessments but also our individualised supports; and
- That Choice and Control sit with us as people with disability, so that we are actively involved in the designing and implementation of OUR NDIS. This absolutely needs to include a fair and transparent appeals process and review process.
So now what I want to know from you, what are your priorities? What are the things that keep you up at night?
With week two being the kick-off of Disability Pride Month, I am hoping that it is a little less whirlwind…. Who knows?
I too spent a lot of time pouring over the NDIS 2024 Bill.. I have a background in policy and legislation as a retired social worker.. ONE thing stood out and it is really worrying me. All legislations have a ‘vibe’ aka a mission that is written into them. The tone of this Bill really worries me. There is a ‘vibe’ of utilitarianism.. accrual accounting.. or in other words this Bill said …(we are not human).. we are number or a ‘class’ or type of disabilities to be grouped together. And amazingly this wording was written in the Bill!! …..And without being dramatic, this is exactly what Hitler did!. When are we going to learn from history?. The concern is that this was probably written by a group of senior public servants who purely looked at this purely as a budget thing… not understanding the danger of this practice and even worse making it legislation rather than policy, which can at least be amended!! Legislation is not so easy to change and sets a tone or vibe for other legislations… horrifying this Bill passed through how many layers of government (rather like robodebt) where no one said.. wait a minute .. this is dangerous. So for me, the language of this Bill was scary. Remember.. it starts with people with a disability… then the aged.. then the refugees.. it is the common story of the ‘fear of the other’ by making them ‘Not human’.. just an accounting issue.