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We have almost made it through 2022. Exhale, friends. It’s been a big one, hasn’t it?
As we round out the year, how about we reflect on some key themes by imaging the NDIS as a musical production? Why not? Yes, I agree!
Ok. Here goes.
Cue music.
The Times They Are A‐Changin’, Bob Dylan
https://www.youtube.com/watch?v=90WD_ats6eE
Your sons and your daughters
Are beyond your command
Your old road is rapidly agin'
Please get out of the new one
If you can't lend your hand
For the times they are a-changin'
On 21 May 2022 Australians voted in a new federal government with a power shift to the Labor party. This led to changes to the ministerial portfolios and gave our sector a new Minister for the NDIS, Bill Shorten. The media release on the NDIS website reminded us that Minister Shorten has a history with the Scheme, having been part of establishing the NDIS under the Gillard government and holding the role of Shadow Minister for the NDIS for the 3 years prior to this new role.
From where I stood, as someone without a confident understanding of the complexities of politics but who has worked in the disability sector for over 16 years, this ministerial appointment seemed to give a sense of hope to the community, with a dash of uncertainty and a pinch of wait and see. People are ready for change and want a genuine and committed leader to steer the ship with them.
I Can’t Remember the Words to This Song, Super Simple Songs
https://www.youtube.com/watch?v=if5vr5s3lNw
I can’t remember the words to this song.
How does it go? Where did I go wrong?
I just can’t remember how this song goes.
I asked all my friends, but nobody knows.
The first day of July gave us updates to the NDIS Act 2013, with some changes to the legislation directly impacting the experiences of NDIS participants. Some of these modifications relate to the ever-changing language and jargon of the NDIS, and why I still consider my role in NDIS support and support coordination to be an “NDIS translator”. We could be forgiven for forgetting the words to the NDIS’ songs.
As of 1 July, scheduled plan reviews are now referred to as “plan reassessments”. We’ve also had the introduction of “plan variations”, plus new forms for an application for a “change of situation or change of details” and requesting a “review of a decision”. In typical fashion, this new language and the required forms were not clearly announced by the Agency to participants but instead pieced together by savvy participants, service providers, and support coordinators, who continue to do a wonderful job of sharing the love and educating each other to facilitate better outcomes for participants. Keep it up, guys: you rock!
Complicated, Avril Lavigne
https://www.youtube.com/watch?v=5NPBIwQyPWE
Why'd you have to go and make things so complicated?
I see the way you're acting like you're somebody else
Gets me frustrated
Avril needs a mention because
(a) I went through a grungy-oversized jeans-punk-rock phase in the 1990s and loved it, and
(b) the NDIS continues to have its own language that, if not understood, can truly impact the outcomes of planning meetings. Friends and I continue to refer to this reality as the ability to “speak NDIS”, and I will maintain teaching this language as my mission to anyone who wants to listen!
(c) We all want people to be able to navigate the NDIS in a much less complicated way – maintaining the current complexity can lead to people feeling anxious, uncertain, powerless, and sometimes deciding not to request access to the Scheme in the first place.
The Room Where It Happens, Hamilton, Lin-Manuel Miranda
https://www.youtube.com/watch?v=WySzEXKUSZw
No one really knows how the game is played
The art of the trade
How the sausage gets made
We just assume that it happens
But no one else is in the room where it happens
So many enormous decisions that impact the lives of NDIS participants and their support networks have been and continue to be made without their having a seat at the table, or as Lin-Manuel Mirada would say, “in the room where it happens”. How can there be true empowerment if participants aren’t in the “rooms” where change happens?
On 26 September, there was an announcement that gave many people hope that some of these “rooms” will change. As tweeted by Minister Shorten, “Today I’m thrilled to announce that Australian Paralympic legend and disability advocate Kurt Fearnley AO will be the new chair of the board of the National Disability Insurance Agency”.
We now have an NDIA board chair with lived experience and, with it, the hope that the Agency can truly listen to more voices that represent lived experience.
Non-Stop, Hamilton, Lin-Manuel Miranda
https://www.youtube.com/watch?v=DPgE7PNzXag
Why do you assume you're the smartest in the room?
Why do you assume you're the smartest in the room?
Why do you assume you're the smartest in the room?
Soon that attitude may be your doom!
How is it that NDIS participants, who are empowered self-advocates, can still be left feeling vulnerable and at the mercy of their assessors? Again, I think that Lin-Manuel Miranda can best explain why.
I think that there continues to be a culture in NDIS planning meetings in which local area coordinators and NDIA planners assume that they are the smartest people in the room, and that lived experience and participant voices are not as valuable or worth hearing as someone with @ndis in their email signature. Or that a personal statement or desire is only valid if it is echoed in a therapy supporting letter and quote.
My dream for my career (and indeed one of my overarching dreams for my life as a whole) is that NDIS participants can access, use, and understand any and all NDIS information, rules, guidelines, and jargon so that they can feel empowered and truly know that they are the smartest person in the room. NDIS participants are the experts of their own lives, and the weight of their voices and statements must be heard that way.
This Is Me, The Greatest Showman
https://www.youtube.com/watch?v=wEJd2RyGm8Q
When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown 'em out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me
I do not have rose-coloured glasses: there are deep and concerning issues in our sector that need addressing and action – in some cases urgently. We have serious issues with sector burnout, worker turnover, and staff shortages. We have too many appeals going to the Administrative Appeals Tribunal (AAT). We have ongoing cases of abuse and neglect and stories of fraudulent service providers.
BUT, as someone who was a case worker in the pre-NDIS NSW disability sector for 10 years, I can still see the potential and actual magnificence of the NDIS. There are opportunities and possibilities that exist now that could not even have been conceived before the NDIS was founded. And in my opinion, the more that participants and their informal supports know their rights and the way the NDIS actually works, the more opportunity people have to ensure that the NDIS meets its potential.
Ice Ice Baby, Vanilla Ice
https://www.youtube.com/watch?v=rog8ou-ZepE
Stop, collaborate and listen.
Thank you, Vanilla Ice: a very short lyrical sentence, but very telling, powerful, and topical words. It’s true though, right? The potential change that could come from stopping (the low expectations, assumptions, and power imbalance), collaborating (true co-design, anyone?), and listening (less of the “TSP” (Typical Support Package), and more of the “listen to me”)? In my opinion (as a wannabe rapper), “Ice Ice Baby” will always help us dance through change. I’ve danced and rapped to this song A LOT this year!
Lose Yourself, Eminem
https://www.youtube.com/watch?v=_Yhyp-_hX2s
You better lose yourself in the music, the moment
You own it, you better never let it go
Writing this article has made me reflect on the old saying that “knowledge is power”. I have never seen this reflected in more days of my life than when I work with people to navigate the NDIS.
But writing this article has also had me thinking about responsibility. Once we have the knowledge, we need to use it, but people must receive the support they may need to do that.
To own it.
So that we can lose ourselves in the music.
Until next year, friends.
