One year ago our lives were different
Parents and loved ones of disabled tamariki and adults speak out
Tomorrow marks one year since the coalition government cut support to disabled adults, children and their families. There is no timeline for any support to come to the community - we have been given no time-frame for this awfulness to end. We are now facing a mental health crisis in the community with increased rates of suicidality, self-harm, and distress.
Here are the words of parents, siblings and loved ones of disabled tamariki and adults again speaking out in the hopes that you will share their words and advocate for the return of support and respect to the community.
This is the second time we have surveyed our community - this is what was said in March last year - The real impact of funding changes to respite care.
Tomorrow, we will be calling on the government to acknowledge the harm they have caused - we hope you will stand with the community. Your solidarity, support, and action is desperately needed. You’ll be able to see our open letter tomorrow at this address: https://our.actionstation.org.nz/p/itstimetosaysorry
Since March 18, 2024, the government’s changes to disability support have not only destabilised our child’s future but have also embedded fear into every decision we make about his life. We had spent years carefully planning for him to have a home of his own, creating a sustainable support system that would uphold his independence and ensure he could continue living in his community long after we were gone. These changes have made that plan too precarious to move forward with—because if his funding were cut after he had moved, where would he be? Out in the cold. The risk is too great, and so his right to an ordinary, stable life has been indefinitely delayed.
The new rules are confusing, inconsistent, and impossible to trust. We had to reduce the number of paid supporters, not because his needs changed, but because the system became too difficult to navigate. The fear of sudden funding cuts and the risk of having to go through redundancy processes for staff meant we had to limit his team, leaving him under-supported and vulnerable. Instead of providing stability, the very system designed to support disabled people now creates insecurity and stress.
The government’s rhetoric has only worsened this situation. By framing disabled people as a financial burden, it has done serious reputational damage to our child and our family—damage that will take decades to undo. This messaging fosters attitudes that reduce disabled people to economic liabilities rather than recognising their inherent value and rights as citizens.
One of the most devastating consequences of these changes is the loss of movement—both in the physical and social sense. The introduction of regional funding caps has denied us the right to freedom of movement, making it impossible for our son to relocate if needed. Support does not transfer easily across regions, meaning that if we needed to move for family, work, or any other reason, he could not be assured of maintaining the same level of service—or any service at all. This is an obscene rollback of human rights, effectively trapping disabled people within certain geographic areas.
But movement is more than just relocation—it is also the ability to participate in daily life. These changes have restricted his ability to move freely out of his residential region, through his community, to engage in work or volunteer opportunities, to celebrate special occasions, or even to pursue his interests. The government has created an environment where disabled people must weigh every outing, every connection, and every opportunity against the fear of losing support. The ability to go where you need to go, for work, for social connection, or for personal fulfilment, should not be something disabled people are forced to justify.
Most disturbingly, the system now holds the power to determine whether we have “met our goals.” If an unnamed decision-maker deems that we have not, he could be forced into a congregated setting. This is not just a policy failure—it is a direct violation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It is a reinforcement of institutionalisation under another name. The government’s shift has made using a support budget to exercise basic human rights feel like a criminal act. Instead of being empowered to build a good life, families like ours are being monitored, restricted, and threatened with the loss of autonomy.
These changes have also disrupted something deeply personal—our process of strengthening family bonds and ensuring knowledge transfer for a future where we are no longer here. We had been preparing for a time when siblings would step into new roles to uphold his life in the community. However, with these new rules, that future is now far less certain. The scenario of siblings stepping into the breach is no longer favourable when they too would have to contend with a system designed to be restrictive, confusing, and unforgiving. Instead of passing on a well-planned foundation of support, we now face the possibility of leaving behind a burden—one that may be too heavy to carry.
These changes have done more than just cut funding; they have shattered long-term security, disrupted family continuity, and instilled fear where there should be confidence. The cost of these decisions will not just be financial—it will be measured in lost opportunities, eroded futures, and deepening inequality for generations to come.
It was really stressful not knowing what we could and could not do to support our child, and I was worried about getting it wrong and then having the minister read out our spending in parliament for the whole country to hear. I was terrified of being publicly shamed like that. Our funding was then cut at the end of 2024 by 15%. There is no change in need, if anything, there has been an increase; I have less capacity due to the stress this government caused us and my child has increased disability related need of support.
We are now living in a state of limbo and uncertainty. I am approaching 70 and need to future proof my daughter for when I am either not able to care for her, unable to organise and supervise her support or simply no longer here. This is an enormous stress and I have had countless sleepless nights worrying, trying to think of viable alternatives and ultimately despairing. I can’t begin to describe the continuing impact this has on me and our lives - words are simply not enough.
I'm not sure that decision makers realise the impact that this funding decision will have. Every day is a struggle and as a parent my mental health is already at breaking point.
Since the changes, I've had to go on stress leave at work several times because I can't cope. My partner can't either. We are exhausted. Our kids don't get supported in the medical system, or the mental health system, or the education system. There is nothing for them and their future has been stripped away.
The government has probably paid more in our ACC claims and ED admissions caused by the stress, physical accidents, and carer burnout that the changes have caused than if they had not cut our allocation and allowed us to have the flexibility to use our funding how we used to. There are no savings for this government, the costs have just shifted to another part of the system (in this case fixing problems instead of preventing them).
It has prevented us from choosing the most appropriate respite facilities and from making helpful and specific purchases for our disabled child’s unique needs. The current options are now limited and the new rules are inflexible. To access our funding, we frequently need to chase or challenge the prividers which adds to our already stressful lives as working parents.
The restrictions and funding cuts have had a serious impact on my child’s ability to live a normal life. This in turn has added more pressure and mental health strain to our family. The snowball effect is real. It’s been horrible.
It has meant that despite being eligible for supports and very much needing them, I have been declined from being able to access any supports - I can’t even get personal care hours to assist with basic hygiene. It’s been over a month since I could have my hair clean, and over two weeks since I could manage a shower. I feel dehumanised and unworthy of existing, and it just creates further barriers and anxieties around accessing the community.
It feels frustrating that we can’t purchase equipment for our child or access training for us as parents to support him.
The government has inserted itself as a controlling third party in employment relationships, leaving us with all of the risk while they retain all of the power. We are responsible for hiring, training, and managing staff, yet they dictate the terms of employment without accountability for the consequences. The unpredictable nature of funding decisions makes it impossible to provide job security, and if support is cut, we are the ones left navigating the legal and financial responsibilities of redundancy. The government has shifted its duty of care onto families while retaining decision-making control, an arrangement that is both unethical and unsustainable.
Perhaps the most profound injury caused by these changes is the attempt to dismantle the progress we have made in freeing ourselves from oppression. For over a decade, we have worked to liberate ourselves from a system that historically confined disabled people to the margins of society. We built a life around the principles of Enabling Good Lives—one that upholds autonomy, dignity, and inclusion. And now, under the guise of consultation, we see the government working to construct yet another system—one designed not to empower, but to align with an austerity model that prioritises cost-cutting over human lives.
Almost everything we had been using carer support and Individualised Funding for or where planning on using it for are no longer things we can purchase with our funding. Previous to March 18 we used the funding primarily for Occupational Therapy, Speech Therapy, [supported] School, and the occasional night away. Losing access to these things was extremely disappointing, he was making so much progress, real measurable progress that was improving his quality of life (and our whole whanau) so much.
It’s like being slapped in the face continuously when I already have someone who does that to me every day anyway.
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We can't use our funding at all. Our allocation days have decreased significantly because we are unable to use it. It's basically like we don't have it at all.
We no longer get respite breaks! Simple as that.
Before, I was able to fund things to help my children regulate that made sense for their individual needs. My mental health is at an all time low because I can’t even get ten minutes to BREATHE in my own home. I haven’t had a break since I last needed surgery in 2021.
I am now more housebound with my daughter who cannot leave the home. This has been eroding my mental health and wellbeing and my husband’s. It has impacted our relationship also.
Is this the life these people who make the choices would want if they were disabled child or sibling?
We have IF respite and carer support for our child. We aren't in a position to hire a support worker for him. Since the changes we haven't managed to use any of our funding as he unfortunately has no interest in 'fidgets'. We had previously planned to use some funding on therapies to help with his anxiety and other issues that had been declined publicly but can no longer do this also.
Give my child the dignity of having funding to complete his basic human rights of his cares!
I’m desperate to keep my child alive, safe, striving for happiness, and contributing in our family and community in the way that best suits him.
My child has transitioned from school this year. Our funding was extremely low but was reassured that because he was leaving school it would be put right with the correct funding put in place for us to care for him as he is totally dependent. What a joke we did a huge amount of work before the review getting physio, dr reports etc to back up that he was 24/7 care and needed support etc. and they came back with one extra hour per week?
We have been unable to use our allocation and they have rolled it over this time but have said we will lose it next time if we don't use it. This has impacted my mental health greatly. I never used it for frivolous things.
The changes have lessened the freedom I had to choose the best ways to support my child.
Respite is now so hard to get I’ve given up trying, which means I’m really tired and not always doing my best parenting.
We are at the end of our tether some days. This causes family strife that impacts our older child. Respite and carer support funding provided us with options that during what has been an exceptionally challenging financial year we have now had to forgo. I wish we had a moment to recalibrate and make sure we could manage our own emotions better. We both work but work is not respite and what we need are options and choice to manage funding to best meet our needs, which are different from week to week and month to month.
The changes have reduced access to equipment and activities, this has narrowed my children's opportunities significantly. No other service provides those opportunities taken away. The changes have created extra work and stress, constantly checking and researching, waiting to hear back, needing advocacy, always uncertain. The changes have negatively impacted how we are treated by funding and medical professionals - people query and decline services because of 'funding changes', it is used as an excuse for excluding and not providing for disability now.
We haven't been able to use our funding since we can't find a suitable carer willing to work for such a tiny amount. We used to use it for things like RDA equine therapy, which allowed my child to interact with others outside our household and helped develop his balance and coordination, but now we can't use it for that since it's in school hours. Which makes no sense since he doesn't go to school. So now we just stay home. I'm with him 24/7.
I can no longer purchase items for my son which he desperately needs! I’ve had to resign from my job to care for him as he is struggling to cope at school having gone through hormonal changes and I need all the help I can get but having to make us jump through hoops when we already have to day in and day out simply isn’t fair!!! We have funding but can’t use it to help!? What’s the actual point then?
Our services and being able to purchase items being removed has meant triple the workload for us as carers. Our family never received any government support in the past as they took one look and assumed she wasn’t disabled enough despite having all the documentation for cerebral palsy. Doors kept closing on us. We who are not wealthy had to make do and we and our disabled child had to work for her supports when she was incapable and suffered each time after a working day. This hurts. Pushed to her limit, she can no longer walk and now needs round the clock help. We can't keep on with this 'make do'. It took us a big fight for them to acknowledge we did need support and we received great advocacy from the previous government. It was short lived, after finally getting help. This current government took away what we relied on. Our daughter has contributed to this society and paid her dues for what?
I think it’s a very odious move by the government to cut off the much needed support for families. The government's unrealistic move are harming many. A person’s disability will never go away, that's a fact. The costs will never go away, that's a fact. For many of us, now with out of pocket expenses, we are mentally and physically drained. Our needs are underfunded because of their unrealistic 'I know what they need attitude'. Our branches don't all fall from the same tree.
I have had two two friends attempt suicide who are trying to parent without enough support. Many of my friends have mentioned suicidal ideation. I have felt suicidal many times this year, as has my partner. We are so burned out. Our savings is dwindling. We are getting stuck more often. We rarely socialise any more. Those who get it, are so burned out and can't get carers. Those who don't get it, make us feel like aliens. We feel disrespected by and fearful of the government.
We have had increased stress and it has affected how we can help and support our child. We have funding but Manawanui have recently stopped funding travel to and from where care is needed, this is severely impacting our ability to take up respite.
It's a struggle to know what we can and can't use our funding for, it's not always simple to find a carer or purchase if they've already got the items outlined in the guidelines.
The changes have been nothing but negative, I used to be able to access the funding to provide my son with certain items to provide independence and respite, under the new changes none of these can be accessed. Everything we apply for or submit gets denied, I’m essentially left with thousands of dollars worth of funding per year I can’t even use. The area we live in also has no support carers available so cannot access that either. All we are given is one electronic item per year and sensory toys, these are not relevant to his disability. It’s yet again another system failure and another barrier to living well.
It has been extremely stressful for our family. We are no longer able to use our respite funding how we need to suit our family in order to get respite. We have now rolled our son's respite budget into his personal cares budget as the respite funding is essentially useless to us and we live in constant fear that his personal cares funding will be reduced when we already don't receive enough at his next roll over date. We are terrified that his personal needs will no longer be able to be looked after either.
The government removed most of my respite. They have taken the individualised out of individualised funding. Made me feel even more exhausted and disheartened about the plight of disabled people in Aotearoa. Made it difficult for autistic kids to use the funding, as they don't fit into the very small boxes of what funding is now allowed to be used for.
My husband has a psychotic break from the stress. Now I have to do it all alone.
This is not just a policy shift—it is a moral injury. We have already lived through a system that oppressed disabled people and their families, and we refuse to be forced back into it. We have fought too hard and come too far to allow our rights to be dismantled in the name of efficiency. The very fact that our pursuit of an ordinary life is now seen as wrongdoing by the system is an outrage. Instead of supporting and expanding the Enabling Good Lives approach, the government is actively trying to erase it, forcing disabled people and their families back into a model of dependence and control.
We no longer are able to take our respite weekends, which affects our mental health, our ability to manage our son, support his sister and impacts our marriage.
We have so much less in our toolbox than we did. We have no access to sensory regulation products we purchased when funding was flexible. We can't afford to pay carers a fair wage for their time, or reimburse their travel - so I simply don't get respite. My middle child can't access carer support during school hours, despite being excluded from school as they couldn't manage his disability. I don't see any hope of avoiding continual burn out. On top of that, the care that I gave to another disabled child didn't stretch to cover the costs of care, and they were refused individualised funding to continue to pay me, so any help I give is out of pocket. Out of an already empty pocket.
My child has an extremely rare disorder. The changes that happened took away supports for us to help them and caused extra financial pressure on us as a family. It's so important to note that most of items that were added back as accepted "support items" or "sensory items" were aimed at neurodivergent and intellectually disabled people, my child is neither of those so we still could not use the funding for things we actually needed. For example, modified clothing (before the change we were able to claim for alterations due to his prosthetic), access to speech and language therapies because the system is sooo behind with referrals etc.
Since the changes we haven't made any purchases that allow us to get respite. We are EXHAUSTED, our child is very high needs and we haven't been able to find anyone to provide us respite for $80 a day. Our mental health is at an all time low as we NEVER get a break or a full night of sleep, due to our child's disability and the monitoring involved overnight. Our carer support and IF has also been cut due to 'government directives" which has put unimaginable strain on our whānau. We are burnt out, and the government just doesn't seem to care, we thought the changes were "temporary" Louise is a joke.
Already struggling looking after my person, the March announcements tipped me into a very bad place of utter hopelessness - I cried every day for 2 months. Perhaps the most devastating change for me as a carer was knowing I could now never ever get a proper break.I feel embarrassed, ashamed and stigmitised I have to be on a benefit, and the changes reinforced that my 24/7 mahi is not valued. My mental health spiralled.
I can no longer claim anything useful with carer support, and this has had a profound effect on our wellbeing as a family. It has had a huge impact on my mental health - the needs and well-being of the carer should be taken into consideration but that is not happening.
It’s isolating and lonely, I feel like a society burden and its affecting my mood and motivation. I am disconnecting from whānau and friends, I have no time to attend to my own needs. I am overdue for medical and health appointments.
As a full time sole caregiver to a disabled child the new changes the government have put in place have made it near impossible to utilise their funding to enable my child to "have a good life" according to the EGL principles. It has isolated us to our home, and very little community engagement and support. As a carer it has also led to major burnout physically and mentally due to not being able to get an actual break away every so often. It feels like sitting on the edge just waiting for something else to be taken away until we have absolutely nothing left. My child cannot attend high school as no schools are willing to take them on due to no funding and lack of support from the government which means we are together 24/7. My child should be able to typically have some independence and going off doing things however due to their disability and lack of funding options I am having to do everything on my own, Including personal cares daily as our budgets have been frozen and told no increase. It is exhausting, draining and demoralising. Some days it feels too much, and have battled with significant mental health issues on top of my own trauma trying to manage.
We are aging parents of a 24/7 terminal adult. We are extremely worried about the future for both him and us
My child is now broken. He is devastated and friends have stopped hanging out as he can’t do what he could do before with funding.. Behavioural challenges and meltdown are reappearing.
Each child has different needs. I feel what’s been taken away from our children with high needs, is so callous and so dictating. Our children can no longer live their best lives.
The way funding has changed has made parents feel like we’ve been cheating when the flexible funding allowed us to be honest and open about what our children needed and wanted to do. Surely keeping families strong is important to ensure our kids have the best support they can.
This is just a small selection of comments. We could not include them all as those at Awhi are also now without the supports we once had. This has meant our ability to volunteer and advocate for our community is deeply compromised.
We are also feeling fragile ahead of the anniversary tomorrow. We are thinking about all that has been lost and hoping our community can survive this.
Please share and sign our open letter being published tomorrow. We need your support now more than ever.
Each child has different needs. I feel what’s been taken away from our children with high needs, is so callous and so dictating. Our children can no longer live their best lives.
Penny Simmonds is definitely going to be forever remembered on the wrong side of history - I hope she feels shame, especially so as the mother of a disabled child. Despicable doesnt even begin to describe her actions.
With the greatest respect to author and contributors:
This article belongs in the freezer with Joey's copy of The Shining :(
It's a horror story of the cruellest kind. Shame on this government.