Allies Aotearoa Periodical | Issue #3 April 2025
What do we do when it all goes quiet?
The consultation process undertaken by Disability Support Services across February and March 2025 was completed on 24 March. Since that date – not a peep – not a word!
Why might that be, and where does that leave us (individuals, family/whānau, allies, and supporters) as we sit in the void between a government process of consultation, with all its inherent promises of change for the better, and the very real things we need to be addressing? Many questions remain about the current situation with Disability Support Services, but I am convinced that:
- We have not seen the last of significant change, or more precisely, we have not even begun to see the implications of the change process – this is all yet to come.
- It is almost certain that the constraints currently in place will remain and tighten. The current austerity measures will not be lifted under the current administration and will likely remain when the administration changes – whenever that occurs.
- Significant structural change is coming and the disability landscape as we have known it for the past 25 years will change in the near to medium term (one to three years).
- Due to the gold-plated consultation process that was undertaken, cries of, “You haven’t listened to us!” will be easily rejected, and whatever changes are implemented will be incredibly difficult to push back on.
- The areas that have always and will always require our attention, highlighted in my article entitled Ministry Purchasing Guideline changes 2024 (click here), remain.
- It is vital that we do not assume a false sense of security in thinking the government will solve things once they make their announcements later in the year. i.e., there are no white horses about to ride over the hill to your door.
- Of course, I would be more than delighted to be wrong.
Pondering these things, I’ve settled on at least a few thoughts that I share with you below. I’d love to hear back from anyone if you have the time and inclination.
Remember COVID?
Five years ago, almost to the day (as I write this), our nation was plunged into our first COVID-19 lockdown. Almost overnight, our lives changed, and we were forced to respond immediately. For some, the lockdown period was a time of rest, reflection, and peace. But for others, it was a time of significantly increased anxiety, pressure, and difficulty. Depending on your personal experience, you will remember the lockdown as a good thing or a terrible time – same lockdown, different personal experiences.
Whatever your personal experience, it is almost certain that you have moved on now, and that period is but a distant memory. This teaches us that no matter what we face, we will get through it and life will go on. This tells us that whatever the changes that are coming, we will get through them, and life will go on. Whatever happens, you will make it, no policy setting or government decision, can take that away from you.
The ‘white horses’ are not coming!
It is understandable, when faced with significant problems/challenges/difficulties and needs that we look to others to come and help us sort it out. To a degree, this is indeed a functional response to difficulty. i.e., I cannot do this alone, and I need some help. However, if it is government policy, government departments or the government itself, that we look to for this assistance (and put all our eggs in that basket) then we will be let down. The government has a role to play, to be sure, but they are not able to ‘fix’ everything for us, and it is not just in our domain, our nation has significant social issues across the spectrum.
I propose that they are not coming, and they certainly are not coming to my house, which is a much more functional and coherent position to take at this point than its opposite. Assuming this position gives us back our power to act, it forces us to act (much like during COVID) and it means we are not victims of poor government policy and decision-making.
The system has different needs to us.
We only need to look back on the June 2024 Independent Review of Disability Support Services: A report to provide advice on the actions that should be taken immediately in the 2024/25 financial year to better manage the increasing cost pressures faced by Whaikaha – Ministry of Disabled People, to see the priority of the administration. It is even in the title (have another read).
The changes that are currently in place and the ones yet to come are at their core based on fiscal pressures – not on the needs of disabled people, family/whānau, providers, and the massive unpaid workforce (mostly family/whānau) that undergirds anything the government provides. This is clearly seen by the current NASC implementation strategies and the fact that if you are disabled and receive an allocation of disability support you cannot move to a different part of the country and be guaranteed any disability support on arrival. Ponder that for a moment.
It means that disabled people and families/whānau with disabled family members are, for all intents and purposes, unable to relocate, for any reason, to another part of Aotearoa NZ. The implications of this are profound and certainly breach disabled people’s human rights. To say that the current processes are for the betterment of disabled people and their families/whānau while fundamentally, intentionally, and knowingly breaching core human rights is, simply, absurd.
Is there any light ahead?
Yes.
If we are able and willing to see reality for what it is and realistically read the tea leaves of our current time(s) we can find our way forward to a better/’gooder’ life. This is a personal matter or perhaps a personal challenge/a wero. This perspective enables us to at least:
- Reclaim our personal power to act.
- Focus our limited time and energy where it is most needed.
- Make our way and keep an eye on what the government is doing.
- Adjust and incorporate any changes the system makes by accepting what is helpful and rejecting what will make our lives more difficult.
- Find other likeminded souls and gather (virtually or in person) to talk through what we can be doing to improve our position and support each other.
- Fine-tune our thinking about how our limited government funding can be used to get the best bang for our buck, and
- Remind ourselves that it is family/whānau, neighbours and communities that are building blocks of our society, not government.
Tony McLean is a parent of three children, one of whom lives with significant health and disability needs. He has worked for over three decades in the ‘disability system’ in a wide variety of roles.
He is now in private practice under Allies Aotearoa | https://alliesaotearoa.co.nz/
We’d Love To Hear Your Strategies
How do you make your way? What have you found to be of benefit? If you are willing to share your suggestions so we can share even further, email us on tony@alliesaotearoa.co.nz
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About the Author
Tony McLean lives with his wife Ange and three children in the beautiful Bay of Plenty of Aotearoa NZ. Their eldest experiences life with chronic and debilitating health impairments. Tony has worked in both paid and voluntary roles within the disability sectors of Australia and New Zealand since 1993 and is the founder of Allies Aotearoa. He is also involved with cbm NZ – an international NGO that serves disabled people in some of the world’s poorest communities.