I work as a care worker for mainly autistic boys, and not only is this threatening the lives and lifestyles of the whānau I work with, it also threatens the livelihoods of hardworking care workers. We don't get massages and pedicures, just like the whānau we work with. We work hard to support people out in this world who aren't able to exist in the world without support. I see into the heart of the worlds these whānau carve out for themselves, and the funding that Whaikaha has provided in the past has really helped to enable better lives. How dare, how very dare the government cut support to people in most need? I see you, struggling with each day and just doing the best you can with what you have, and my heart cries out against this latest injustice. It cannot stand.
Meanwhile: disability support services suddenly throttled with little to no notice.
During Covid, iirc, purchasing with support funding was widened to include the purchase of items that could give a carer some respite from providing 24/7 care of their disabled dependent person. This was a welcome change for many carers who previously had been unable to get respite because it is so hard/verging on impossible to find a willing human carer to pay to do the care in order to access the respite, and the funding amount was so low (like, $10 per hour) so you'd have to top up the carer's pay yourself, and people who can't otherwise work because they're doing full time care of a disabled person just don't have that kind of money. Carers were also permitted to buy items like trampolines or sensory swings or venue annual passes to keep their disabled dependent occupied/soothed/entertained. The benefits were immediate: carers didn't have to do extra work/have the stress of trying to find a suitable, available substitute carer, and the items were often reusable enabling carers to getting a break more often (daily!!). Sometimes it even meant carers could actually sleep through the night for a change eg with technology minding the doors/child on their behalf.
Yesterday it returned to being for paying for people only. Though the amount of support funding "hasn't changed", because of the shortage of people in the substitute carer pool, this will mean less funding $$ will be spent. What a nifty way to save money.
So now some parents will be abandoned once again to 24/7 clean up smeared poo multiple times a day, be bitten/hit/spat on by their own child during meltdowns, judged constantly if they ever dare go outside their own home (or even when they're still in it eg when neighbours complain about the noise).
But you know, those people who own more than one property have it sooooooooo haaaaard, won't somebody please think of the landlords.
This government is the fucking worst. I'm so sorry for all those whom this affects (although it affects all of us because we lose amazing people), writing to my MP now to say how fucked off I am. These arseholes are cutting all the corners just so they can give kickbacks to landlords and cigarette companies, it makes my blood boil.
I know this means more mahi for you Emily, I hope there are people who can support you so you can continue to recooperate.
Tried to read this out loud to my partner as he drove the car. Had to stop because of the lump in my throat (and the tears). We have both been central government policy people the majority of our working years and we are just 💔😔😡
I thought this "government" was inhumane already but this absolutely takes the cake. They make up so much sh*t without ever consulting those who will be most affected. My heart goes out to you 💕 Emily. I hope you get well soon
Oh plot twist! Long story short I’ve been invited at a thing at parliament tomorrow night to do with Canterbury University (I’ve helped out in the past with scholarships for under-privileged kids). Anyway, the host is Penny Simmonds (Minister for Disability Issues). I *hope* there’s a Q&A or a chance to talk to her - I have a few things to ask…
I'm so angry this has happened, its disgusting. I've written to my local MP and to Hon Penny Simmonds (Minister for Disability issues) about how appalling this is.
😡😢 I am convinced it is a deliberate strategy to hit the disadvantaged at every level so that we won't be able to have time & energy to fight back 🤷 Over on Webworm (David Farrier Substack) we were just discussing bad managers & this govt would have to go to top/bottom of class in terms of destoying the organisation/country they are tasked with maintaining & improving. This govt is a coalition of parties no-one wanted on their own - at least with Labour/Greens there was some 💙 in the philosophy/policies, whether they worked out optimally or not 🤷
For those who aren't affected but care about you and yours, time to step into the breach & do what we can on your behalf - most of us won't be able to be carers, but there is always some peripheral thing we can do & that is what we need to look for now 🫂
Thank you for writing this, Emily. So many years of advocacy and little victories along the way such as the principles and practices of the Convention on the Rights of Persons with Disabilities, Enabling Good Lives, Individualised funding, personalised budgets and all the stuff about choice and control that helps each family in their own way. All destroyed in a day without any consultation. Paula, the CE of Whaikaha, and the staff there must be devastated. She would have fought this but is was clearly a directive from the Coalition Government. Just another step in their eugenic policies for NZ. The Disability Minister, herself the mother of a disabled adult daughter, had some empty weasel words in justification.
I heard recently that Cabinet was going to discuss Enabling Good Lives and you can just imagine what they would have said, what's all this woke stuff about choice and wellbeing, let's change it into Social Investment. Social Investment is a model much loved by this Government, that is rigidly and narrowly targeted on the disabled person, stigmatising and punitive in a top down charity model, because disabled people are considered to be less worthy humans. It goes with an assumption that families or carers should really just look after the poor disabled children and adults for free (with a subtext that it is a pity that we closed all the big institutions as they would be well cared for and with their own kind there). And we need to save money on disability support so there is more money for tax cuts for our donor landlords.
Dearest Emily. Thank you. I cried reading this (just like a howled reading your first book, realising someone else ‘got it’). And I appreciate everything you do (not just for this issue) but all that you spend your energy (energy you don’t have) on. Please please rest. Let others pick this up. We need you well (& so do your whānau). This probably sounds incredibly condescending, and that couldn’t be further from the truth. I just know how it is to run on nothing. And you don’t want to do that when you have Covid. Thank you so much for all your mahi. Sending arohanui and restful thoughts to you. 💕
Thank you for sharing this. Somehow amidst the business of the week I'd missed this news and what it means, and I am horrified at what this government is doing to our most vulnerable people under 'urgency' with little or no consultation. I can't imagine what these parents go through and I'm almost in tears thinking about how this would impact someone already so stressed and tired and trying so hard for their family. What can we do? How can we get this changed back?
Fuuuuuuuuuuuuck!! This all really sucks. Thank you for the hope and empathy at the end. In the face of a government and culture that wants us fighting amongst ourselves to distract from their nefarious bullshittery, compassion and solidarity are forms of resistance.
I work as a care worker for mainly autistic boys, and not only is this threatening the lives and lifestyles of the whānau I work with, it also threatens the livelihoods of hardworking care workers. We don't get massages and pedicures, just like the whānau we work with. We work hard to support people out in this world who aren't able to exist in the world without support. I see into the heart of the worlds these whānau carve out for themselves, and the funding that Whaikaha has provided in the past has really helped to enable better lives. How dare, how very dare the government cut support to people in most need? I see you, struggling with each day and just doing the best you can with what you have, and my heart cries out against this latest injustice. It cannot stand.
I just left this comment on a Newshub article
Meanwhile: disability support services suddenly throttled with little to no notice.
During Covid, iirc, purchasing with support funding was widened to include the purchase of items that could give a carer some respite from providing 24/7 care of their disabled dependent person. This was a welcome change for many carers who previously had been unable to get respite because it is so hard/verging on impossible to find a willing human carer to pay to do the care in order to access the respite, and the funding amount was so low (like, $10 per hour) so you'd have to top up the carer's pay yourself, and people who can't otherwise work because they're doing full time care of a disabled person just don't have that kind of money. Carers were also permitted to buy items like trampolines or sensory swings or venue annual passes to keep their disabled dependent occupied/soothed/entertained. The benefits were immediate: carers didn't have to do extra work/have the stress of trying to find a suitable, available substitute carer, and the items were often reusable enabling carers to getting a break more often (daily!!). Sometimes it even meant carers could actually sleep through the night for a change eg with technology minding the doors/child on their behalf.
Yesterday it returned to being for paying for people only. Though the amount of support funding "hasn't changed", because of the shortage of people in the substitute carer pool, this will mean less funding $$ will be spent. What a nifty way to save money.
So now some parents will be abandoned once again to 24/7 clean up smeared poo multiple times a day, be bitten/hit/spat on by their own child during meltdowns, judged constantly if they ever dare go outside their own home (or even when they're still in it eg when neighbours complain about the noise).
But you know, those people who own more than one property have it sooooooooo haaaaard, won't somebody please think of the landlords.
https://www.whaikaha.govt.nz/assessments-and-funding/individualised-funding/purchasing-guidelines/what-people-can-buy-with-disability-funding-purchasing-rules
This government is the fucking worst. I'm so sorry for all those whom this affects (although it affects all of us because we lose amazing people), writing to my MP now to say how fucked off I am. These arseholes are cutting all the corners just so they can give kickbacks to landlords and cigarette companies, it makes my blood boil.
I know this means more mahi for you Emily, I hope there are people who can support you so you can continue to recooperate.
Tried to read this out loud to my partner as he drove the car. Had to stop because of the lump in my throat (and the tears). We have both been central government policy people the majority of our working years and we are just 💔😔😡
I thought this "government" was inhumane already but this absolutely takes the cake. They make up so much sh*t without ever consulting those who will be most affected. My heart goes out to you 💕 Emily. I hope you get well soon
Oh plot twist! Long story short I’ve been invited at a thing at parliament tomorrow night to do with Canterbury University (I’ve helped out in the past with scholarships for under-privileged kids). Anyway, the host is Penny Simmonds (Minister for Disability Issues). I *hope* there’s a Q&A or a chance to talk to her - I have a few things to ask…
They're just going to keep taking until there's nothing left.
I'm so angry this has happened, its disgusting. I've written to my local MP and to Hon Penny Simmonds (Minister for Disability issues) about how appalling this is.
😡😢 I am convinced it is a deliberate strategy to hit the disadvantaged at every level so that we won't be able to have time & energy to fight back 🤷 Over on Webworm (David Farrier Substack) we were just discussing bad managers & this govt would have to go to top/bottom of class in terms of destoying the organisation/country they are tasked with maintaining & improving. This govt is a coalition of parties no-one wanted on their own - at least with Labour/Greens there was some 💙 in the philosophy/policies, whether they worked out optimally or not 🤷
For those who aren't affected but care about you and yours, time to step into the breach & do what we can on your behalf - most of us won't be able to be carers, but there is always some peripheral thing we can do & that is what we need to look for now 🫂
Thank you for writing this, Emily. So many years of advocacy and little victories along the way such as the principles and practices of the Convention on the Rights of Persons with Disabilities, Enabling Good Lives, Individualised funding, personalised budgets and all the stuff about choice and control that helps each family in their own way. All destroyed in a day without any consultation. Paula, the CE of Whaikaha, and the staff there must be devastated. She would have fought this but is was clearly a directive from the Coalition Government. Just another step in their eugenic policies for NZ. The Disability Minister, herself the mother of a disabled adult daughter, had some empty weasel words in justification.
I heard recently that Cabinet was going to discuss Enabling Good Lives and you can just imagine what they would have said, what's all this woke stuff about choice and wellbeing, let's change it into Social Investment. Social Investment is a model much loved by this Government, that is rigidly and narrowly targeted on the disabled person, stigmatising and punitive in a top down charity model, because disabled people are considered to be less worthy humans. It goes with an assumption that families or carers should really just look after the poor disabled children and adults for free (with a subtext that it is a pity that we closed all the big institutions as they would be well cared for and with their own kind there). And we need to save money on disability support so there is more money for tax cuts for our donor landlords.
Thank you Emily for your words and advocacy, especially when you are so sick atm!
These changes are absolutely devastating for our family and has left me feeling so defeated.
I have found it interesting that I can’t really see any news articles or headlines about it from all the major sources
Dearest Emily. Thank you. I cried reading this (just like a howled reading your first book, realising someone else ‘got it’). And I appreciate everything you do (not just for this issue) but all that you spend your energy (energy you don’t have) on. Please please rest. Let others pick this up. We need you well (& so do your whānau). This probably sounds incredibly condescending, and that couldn’t be further from the truth. I just know how it is to run on nothing. And you don’t want to do that when you have Covid. Thank you so much for all your mahi. Sending arohanui and restful thoughts to you. 💕
What a dark path we are being led down by this Government.
Thank you for sharing this. Somehow amidst the business of the week I'd missed this news and what it means, and I am horrified at what this government is doing to our most vulnerable people under 'urgency' with little or no consultation. I can't imagine what these parents go through and I'm almost in tears thinking about how this would impact someone already so stressed and tired and trying so hard for their family. What can we do? How can we get this changed back?
Fuuuuuuuuuuuuck!! This all really sucks. Thank you for the hope and empathy at the end. In the face of a government and culture that wants us fighting amongst ourselves to distract from their nefarious bullshittery, compassion and solidarity are forms of resistance.
Have sent your article to my local MP. I want to scream on behalf of everyone this impacts directly. Fuck this government