Day 183 - DUNZ - Successful Invercargill Disability Forum

Successful Invercargill Disability Forum

By: Melissa Corbin

Disabled United Invercargill: 11:15 am, Wednesday, 18 September 2024

On Saturday, 14th September, the Invercargill branch of Disable United hosted a Disability Forum with Labour members Ingrid Leary, the Hon. Priyanca Radhakrishnan and Hon. Carmen Sepuloni attending.

Unfortunately, we didn't get many people attending, but this time, we had different people in our audience, with 36 people in attendance.

Everything went fairly smoothly, except we had a few issues getting the interpreter online for our deaf community.

Labour talked about seeing us and the hard work we are doing here in Invercargill and acknowledging our committee's role in setting up DUNZ. The speakers also talked about the importance of getting everyone's stories to them so that they can challenge the Government with real, day-to-day stories of how much we are all struggling with these changes to our funding.

We also talked about the importance of connecting with our community, as there still seem to be many members of the general public who don't know how these funding changes are affecting them.

Overall, the event went well, with lots of robust discussion around our next steps, which need to include getting information out to the general public as well as our disabled community and gathering stories to send to Labour so they can speak for us in Parliament.

We will discuss our next steps at our next committee meeting later this week.

Thanks once again to my wonderful committee for getting the work done so we could run this event.

Melissa Corbin

Disabled United Invercargill Outreach Coordinator

Last Updated 18/09/2024

RESOURCES

• https://www.dunz.org.nz/2024/09/day-166-invercargill-disability-forum.html

Day 170 - The Star - Opinion: disabled left in limbo by frontline cuts

Opinion: disabled left in limbo by frontline cuts

By: Ingrid Leary Labour MP for Taieri

The Star: 5 September 2024

Just when we thought it couldn’t get any worse or any more cruel from this National government, media this week reported a leaked document revealing a freeze on new residential support for many disabled people.

A leaked copy of guidelines issued by Whaikaha Ministry for Disabled People said there would be no net increase in residential places while the freeze was in place.

This means families going through the process of applying for government-funded or supported residential accommodation for siblings or children are now left completely in limbo. As are those with high-needs children who were relying on residential care down the track, or parents who can currently look after children but may not be able to do so in future due to their own health needs, or changed circumstances.

It’s causing huge anxiety among my constituents, therefore I was grateful to host my colleague Priyanca Radhakrishnan at the Labour Rooms in South Dunedin last week, to hold a public forum for the disabled community, as well as a second meeting with community service providers.

The purpose of both was to exchange information, so that we can answer community questions, hold the government to account, and co-create meaningful policies for when Labour returns to government by 2026.

Despite the austerity measures being imposed across all agencies, the National government pretends there are no cuts "to the frontline".

The disabled community have felt it hardest, losing frontline support when the government made the brash decision to cut flexible funding for carers.

As well as the proposed freeze to residential care, National has announced the end of Whaikaha, the ministry tasked with increasing choice and control for disabled New Zealanders, as well as their access to services.

The public service cuts started with border workers.

For months New Zealanders had been told by the government there would be no cuts to the frontline, and then we found out some of the people who work to prevent drugs and pests coming into New Zealand were losing their jobs.

Then it was reading recovery teachers. The people who had been helping teach kids to read for 50 years, and in many cases much-loved specialist teachers who are now being forced into retirement.

Then the government stopped filling doctors and nursing roles. They made big claims saying they were investing properly in the health system, but instead they’re shrinking the workforce to cut costs and putting even more pressure on the system. GPs have been forced to put the price of seeing the doctor up just to cover costs.

We found out about reductions at the suicide prevention office, and jobs being disestablished in the teams that deal with child exploitation, anti-terrorism and online harm. At the same time, up to 190 frontline providers who work with vulnerable children, women and families have had their government funding stopped, and a further 142 have had their funding reduced.

The government continues to claim frontline services would not be touched

Christopher Luxon said they would be "protected" and when Nicola Willis was asked time and time again if there would be any new cuts to frontline services, she said "I make that promise".

What is absolutely clear not even a year into the coalition government, is National has no plans to keep the promises it made to New Zealanders about frontline services, and every plan to keep cutting them.

Last Updated 9/09/2024

Resources

• https://www.odt.co.nz/the-star/opinion-disabled-left-limbo-frontline-cuts

Day 166 - Invercargill Disability Forum on 14 September

Invercargill Disability Forum

Have you or someone you know been affected by the changes to the Disability Funding?

Come along and learn how this affects our community and what we can do about it.

Doors will open at 1:30 pm

Light refreshments will be provided.

When: Saturday, 14 September 2024. 2 pm - 3.30 pm.

Where: Upstairs, Invercargill Public Library, Dee St, Invercargill.

Invited Speakers: Ingrid Leary MP, Hon. Priyanca Radhakrishnan, Labour spokesperson for disability issues.

Organised by: DUNZ Invercargill & The Southland Deaf Community.

For more information: Melissa Corbin, invercargill@dunz.org.nz

Last Updated 11/09/2024

RESOURCES

• NZLP Poster colour (PDF)

• DUNZ-Invercargill poster b/w (PDF)

• s

Day 81 - Waiarapa Times Age - Advocates seeking more support for disabled

Advocates seeking more support for disabled

By: Freddie Wikie and Lucy Cooper

Waiarapa Times Age: 08/06/2024

At a recent meeting in Masterton, residents called on Wairarapa-based Labour MP Keiran McAnulty and Labour Disability Spokesperson and former Carterton resident Priyanka Radhakrishnan to advocate on their behalf for more funding and support in the disability sector.

 PHOTO/FREDDIE WILKIE

Masterton support and advocacy service CCS Disability Action [CCS] has “major concerns” about whether Budget 2024 will deliver better outcomes for disabled people living in Wairarapa.

CCS community support coordinator Jo Scott questions the adequacy of the $1.1 billion for Whaikaha – Ministry of Disabled People that Finance Minister Nicola Willis announced last week, “given a portion of this will cover [the Ministry’s] deficit”.

“It is unclear where this funding will be allocated or whether recently introduced restrictions [on disability support funding] will be rolled back,” Scott said.

“This leaves disabled people and their families in an uncertain position.”

The recent changes to disability support funding [which were announced suddenly in March by then Disability Issues Minister Penny Simmonds], the Government’s review into that funding, and the difficulties disabled people face trying to access services “feels like a huge backwards step”, Scott said.

“It’s dehumanizing and demoralizing for people who are battling these systems every day.”

The independent review is “deeply” concerning as “there appears to be little or no disability representation on the review panel”, Scott said.

Other measures in the budget will also “negatively impact disabled people and their families.

“This includes the removal of the fees-free prescriptions and a lack of increase in the disability allowance and child disability allowance [which means a cut in real terms].

“And based on income trends, disabled people are unlikely to benefit from tax cuts.

“Most people will be worse off, based on this budget.”

Local disability advocate Peter Knighton told Times-Age he is equally despondent about the prospect of the budget delivering any real change for him and others in the disabled community.

Knighton, who has several disabilities himself, recently took matters into his own hands and set up a petition to be lodged with the parliament.

It calls on the current government to provide more support and funding to the disability sector, and has already attracted 520 signatures from local people.

Knighton took his petition to a recent Labour Party disabilities meeting in Masterton, where he also expressed concern about the current government’s “lack of public consultation” on the funding changes earlier this year.

“They have cut funding to caregivers; imagine what they are going to do with disabled people,” he said.

At the meeting, local Labour list MP Keiren McAnulty and Labour’s Disability Spokesperson and former Carterton resident Priyanka Radhakrishnan promised to lodge the petition with the Petitions Office.

“Once lodged, it will go to the petitions committee,” Radhakrishnan said. “It will then go to a select committee, where they will consider it. I will play my part in facilitating that.”

Knighton’s campaigning on disability issues locally was also acknowledged by National MP Mike Butterick.

“I acknowledge Peter Knighton, a long-term local advocate for disabled people’s rights and a member of the Ministry for Disabled People’s national ‘My Home My Choice’ Steering Group,” he said.

“I have met with Peter and heard his concerns in recent weeks.

“As a government, we want the best outcomes for disabled people, their families, and those who care for them.”

Speaking about the independent review into disability support services led by Sir Martin Weavers, Butterick said it “will provide the disabled community with certainty”.

Last Updated 08/06/2024

RESOURCES

• https://times-age.co.nz/health/wairarapa-residents-met-to-discuss-disability-issues/

Day 71 - Manawatu Guardian - Opinion - Palmerston North residents concerned about disability funding changes: MP Tangi Utikere

Palmerston North residents concerned about disability funding changes: MP Tangi Utikere

By: Tangi Utikere

Manawatu Guardian: 6 am, 29/05/2024

Palmerston North MP Tangi Utikere addresses a public meeting last Friday about changes to disability support funding. Also pictured is Labour’s disability issues spokeswoman Priyanca Radhakrishan.

Tangi Utikere is the MP for Palmerston North.

OPINION

The Labour Party believes the recent narrowing of disability funding effectively means carers can no longer access some services they have been able to access previously.

These cuts were communicated and implemented on the same day, without any consultation with those affected by these changes, and this has understandably left many disappointed.

Successive governments have worked hard to improve outcomes for disabled people in New Zealand, ensuring societal change through the Enabling Good Lives (EGL) approach, which was piloted in Palmerston North, by introducing flexible funding to support carers, and by setting up Whaikaha - Ministry of Disabled People.

Over the past few months, I have heard from a number of constituents from our disability community who feel incredibly let down. They are anxious that work that was under way to transform the disability support system in accordance with EGL principles will be stopped.

On Friday, I hosted a public meeting in Palmerston North with Labour’s disability issues spokeswoman, Priyanca Radhakrishnan, to listen to the concerns of those in our disability community who have been affected by these changes.

They are right to feel angry and upset, when they don’t know what the future holds for them if they lack flexibility and can not access services that were previously funded. As your local MP, I am committed to supporting our disability community, and advocating on their behalf for the assistance they and their carers need.

Last week was Road Safety Week, and it was a pleasure to visit two schools to acknowledge the mahi our young road patrollers do every day.

Safety around our schools is so important, and ensuring tamariki can arrive at and leave kura safely each day is a huge responsibility.

Whether it is raining, hailing, windy or brilliant sunshine, our road patrollers are out there doing their bit for their school and their community, so it was awesome to show them some support on the crossing, and surprise patrollers at one lucky school with a delicious morning tea to show my appreciation for the fabulous work they do throughout the year.

With the release of the Government’s Budget, I expect a number of new Government initiatives announced across a range of portfolio areas. As your local MP, I’ll continue to stand up for all Kiwis and keep a close eye on the Budget to make sure New Zealand, and Palmerston North, will not be going backwards as a result.

Day 69 - Manawatu Standard - ‘This has become very real’: Disability cuts devastate sector

‘This has become very real’: Disability cuts devastate sector

By: Alecia Rousseau

Manawatu Standard: 3:00pm, May 27, 2024

Tangi Utikere, left, and Priyanca Radhakrishan told the crowd they were doing all they could to help the disabled community.
ADELE RYCROFT / MANAWATŪ STANDARD

The Government’s cuts to disability services have left people desperate, frustrated and unable to access care, a meeting has heard.
A full house packed into the Community Leisure Centre in Palmerston North on Friday to hear from Labour’s Minister for Disability Issues Priyanca Radhakrishnan and MP Tangi Utikere.

The pair told the crowd they were aware of the devastating impact the changes to flexible funding had on people and said they were doing their best to challenge Whaikaha, the Ministry of Disabled People, on its decision.

The ministry announced in March it was changing purchasing rules for disabled people and their carers effective immediately.

This happened without consultation and was announced via Facebook.

People told the public meeting there is too much uncertainty and they are reaching breaking point.
ADELE RYCROFT / MANAWATŪ STANDARD

Since then, the ministry had provided clarifications to what it says are “temporary” rules that impact things such as the purchasing of sensory items, respite care and the ability to use funding during school hours.
But Radhakrishnan said the “hurt and damage” was already done and families were reeling from the decision to take away their flexibility.

It also went against the approach of Enabling Good Lives, something that was mandated when National was previously in power.

Families had told her they were unable to pay carers to accompany them on trips or for therapy their children needed.

One woman’s story in particular stuck with Radhakrishnan.

A youth leader in Auckland had been unable to attend a gathering at Parliament because she could not take a support person with her.
Many who did go “couldn't access food, water or toilets”, she said.
The ministry had now ”walked that [restriction] back a bit” and anyone claiming those services prior to March 18 could continue doing so.

“There is a strong sense that people are just exhausted and at breaking point and this is almost pushing people over the edge frankly.”

The Minister for Disability Issues at the time, Penny Simmonds, who had since been replaced with Louise Upston, said the changes were because of financial pressures.

Pip Brunn, who is on the regional leadership group for Enabling Good Lives, says people are not getting access to the funding they’ve gone through huge processes to get.
ADELE RYCROFT / MANAWATŪ STANDARD

But Radhakrishnan said the Government should have topped up the funding, and there was a “timeline of inaction”.

“She [Simmonds] knew in December, signed a briefing on March 14 for these changes that were then announced on March 18.

“I think she dropped the ball on this and that's probably reflected in her losing her portfolio.”

Flexibility was introduced by Labour in 2022 and that saw demand increase because a number of people previously unable to access funding could now do so, she said.

“When you bring in flexibility, you then start to get the true measure or gauge of need.”

Toni ‘Ants’ Burgess told the crowd a flexible approach from Enabling Good Lives had helped her out of a wheelchair and off crutches.

Radhakrishan says the changes have impacted many people and all in different ways.
ADELE RYCROFT / MANAWATŪ STANDARD

She had gained independence and completed half-marathons, but her next four events were canned because she could no longer “koha” or pay a support person to accompany her.

She said there had been no consideration of the risk when making the changes, especially for those who were suicidal or suffering from mental health issues.

“The real life impact of this has become very very real in our city this week.”
She worked in the disability abuse sector and said they were seeing “more and more” people struggling with the ministry’s decisions.

“If people aren’t supported properly they are going to go through what I did in 2019 when I had a massive breakdown because they are not supported properly.”

The public meeting allowed disabled people to share the personal impact the chnages had on their lives.
ADELE RYCROFT / MANAWATŪ STANDARD

She “could not believe” some of the restrictions placed on whānau and their supporters.

“It’s absolutely insane. I spoke to Oranga Tamariki last year and we all know supported families are safe families.

“Here in MidCentral we had the least uplifts of disabled kids during lockdown, we know what works.”

Pip Brunn, who was on the regional leadership group for Enabling Good Lives, said people were not getting access to the funding they’d gone through “huge processes” to get.

“They’ve had to share their whole entire lives, they’ve had to justify why they should be able to leave their home.

“They’ve had to go through all of these things just to get the support they need just to survive [and] to be able to wake up the next day.”

Utikere said one thing he was hearing was the new rules “fly in the face” of Enabling Good Lives, which was about giving people greater choice and control over their lives.

“There's a fair bit of anxiety that this means that the pathway of the trajectory that we were on, which was to extend Enabling Good Lives, has now been derailed.”

Whaikaha has since admitted it had “a lot to learn” from the way it made the “confusing” announcement, and said it was committed to working with those in the sector.

An independent review into the disability support system was also under way and Upston said this was to strengthen its long-term sustainability.

- Manawatu Standard

Last Updated 27/05/2024

RESOURCES

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Day 65 - NZLP - Disabled Children Latest To Lose Access To Funding

Disabled Children Latest To Lose Access To Funding

Thursday, 23 May 2024, 5:02 pm

Press Release: New Zealand Labour Party

Disabled children and families nationwide have recently found out they’re no longer able to use disability support funding for programmes during school hours in another quiet update from the Government.

“It is unacceptable that this government continues to deny disabled people access to supports they need to be able to participate in society. This time it’s support for disabled children who often struggle to cope at school,” Labour disability issues spokesperson Priyanca Radhakrishnan said.

“These new changes mean cutting funding for programmes that are often tailored to the specific needs of the child and offered only during the day.

“These programmes provide safe, nurturing environments for disabled children to develop the skills that they need to be able to cope with school. They help with regulating anxiety, improving confidence, deal with physical health conditions and enable them to improve their health and wellbeing outcomes.

“Minister for Disability Issues Louise Upston confirmed these new changes in the House today and when asked, also couldn’t guarantee the Enabling Good Lives (EGL) rollout was safe from cuts or how these changes were consistent with EGL principles.

“Families are quite rightly frustrated and upset that not only has the government refused to make things right and reinstate funding flexibility, they’re also taking more away.

“This is not what New Zealanders voted for, yesterday a poll was released showing the majority of the coalition’s own voters want funding flexibility for disabled people and their carers fully reinstated.

“It’s untenable for the Government to let this continue any longer. Minister Louise Upston must apologise and fully reinstate flexible funding so that disabled people, carers and the wider disability community have better choice and control,” Priyanca Radhakrishnan said.

Last Updated 24/05/2024

RESOURCES

• Scoop Press Release

Day 65 - Hawkes Bay Today - Tararua District shares ‘heartbreaking’ stories over disability funding

Tararua District shares ‘heartbreaking’ stories over disability funding

By: Leanne Warr

Hawkes Bay Today: 01:16 PM, 23 May, 2024 

Kieran McAnulty and Priyanca Radhakrishnan were in Tararua earlier this month to talk to families and disability advocates.

Disability cuts have made it so much harder for families dealing with disabilities, more especially in rural areas, according to Labour Disability spokeswoman Priyanca Radhakrishnan.

The List MP, accompanied by Kieran McAnulty, was in Tararua District earlier this month to talk to families and disability advocates about the recent cuts to disability funding.

She said at issue was the flexibility of how people could use the money was taken away.

“Ostensibly they’re saying there’s no cut to the monetary value.”

However, with no allowance for flexibility, it meant such things as less ability to travel outside the immediate community.

Those in rural communities who needed to access services that were large distances away, such as Palmerston North, couldn’t afford to use those services.

“There’s no recognition of places like Tararua District that doesn’t have public transport or the support services aren’t close by,” McAnulty said.

The Ministry of Disabled People (Whaikaha) was founded in July 2022.

Radhakrishnan said before that, carer support funding and individualised funding could be used for a small number of things.

Flexibility was brought in which allowed full-time carers of a disabled person to take a break.

“Now that’s been taken away,” she said.

“Prior to 2022, those funding pools were under-utilised. Because people couldn’t access it for the needs they had it was never over-spent. When flexibility was brought in, suddenly people could find some funding to support the needs they always had, so it became over-subscribed.”

Radhakrishnan said when there were caps on funding that weren’t realistic because they weren’t meeting people’s needs and then removed that, people would start using it.

“So then you need a little bit of time to figure out what the actual need is and what funding support you need to be able to meet that.

“That’s the position we’ve been in.”

She said that normally changes would be made for a year out, but following the Government’s announcement on funding in March, changes were immediately implemented, leaving some people with disabilities confused about what could be funded.

McAnulty said he had been hearing stories from many in the community.

“I knew it was bad, and I knew a lot of people were impacted. Hearing the stories to my face was heartbreaking.”

Radhakrishnan said they would keep fighting, through questions in the house and using all the tools they have available.

She was also attending meetings both with community leaders and public meetings.

“We’ve heard directly through the disabled. They are now organising rallies, protests, marches, writing to various decision makers.”

Because of that pressure, some of the decisions had been rolled back, but not all.

She said she was seeking reinstatement of flexibility funding as well as an apology from the Government for “cruel and callous remarks made by the minister” over what was said to be a misuse of funding.

The Government has yet to announce what disability funding will be included in the upcoming budget.

Day 64 - NZLP - Strong Support For Disability Funding

Strong Support For Disability Funding

Wednesday, 22 May 2024, 11:42 am

Press Release: New Zealand Labour Party

Two thirds of Kiwis in a new poll want funding flexibility reinstated for disabled people and carers.

“New Zealand’s disability communities were blindsided by changes announced and implemented in March, when then-Minister for Disability Issues Penny Simmonds signed off on changes to funding flexibility that cut support without consulting anyone, then told people about it via a social media post,” Labour disabilities spokesperson Priyanca Radhakrishnan said.

“I’ve been holding meetings around the country to hear from disabled people because the Government isn’t listening. Despite changing Ministers, they’re yet to apologise or make things right.

“A poll released today by the Fairer Futures coalition, commissioned by Talbot Mills, shows two thirds or 66 per cent of Kiwis think the Government should reverse the cuts and reinstate funding flexibility for carers and disabled people.

“The numbers also suggest that 62 per cent of National Party voters support reinstating the funding, as do 69 per cent of New Zealand First voters, and 70 per cent of ACT voters.

“This reflects the huge amount of support I’ve seen and heard from people around the country for funding flexibility to be reinstated and for this government to stop isolating disabled people and the wider disability communities.

“Earlier this month when questioned, the new minister Louise Upston failed to reveal how many people were impacted by restricting funding flexibility and how much money the Government has or will actually save from these changes.

 “It’s worrying that after more than two months since this change was made, the National Government still don’t know what they actually gained from it and yet it’s clear that disability communities continue to suffer as a result.

“Disabled people and their carers are exhausted by fighting for their right to live with dignity and are increasingly anxious that the Government will make further cuts to their supports.

“I call on the Government, as I have been for many weeks now, to immediately reinstate funding flexibility for disabled people and carers and apologise to disability communities,” Priyanca Radhakrishnan said.

Last Updated 24/05/2024

RESOURCES

• Scoop Press Release

Day 55 - NZLP - Palmerston North Public Meeting May 24 2024

Palmerston North Public Meeting May 24 2024

By: Kylee Maloney

DUNZ Palmerston North: 14/05/2024

Today I received word from the office of Tangi Utikere, MP for Palmerston North, that he and the Hon Priyanca Radhakrishnan, Labour's Disability Spokesperson for Disability Issues, propose to hold a public meeting of the disability community and allies on Friday 24 May.

This will be at 14:30 in the Community Leisure Centre, 569 Ferguson Street, Palmerston North. 

Please print and/or distribute the attached flyer and text far and wide. We need to fill the centre to its rafters and then raise them with our ire and determination to protest the ongoing disrespect and disregard with which we are habitually treated.

Last Updated 14/05/2024

RESOURCES

• Disability Community Meeting Poster (PDF)

• Disability Community Meeting Poster (DOCX)

Day 43 - DUNZ - Invercargill Protest held today

Invercargill protest held today

By: Melissa Coban

DUNZ - Invercargill: 8pm May 2, 2024

A big thank you to those who attended the Invercargill protest held today outside Penny Simmons office despite the weather. 

We had a few Labour party members attend today to share their voice with us against these changes to funding and chat with us about what's happening and how they can help us. 

We are now at the point of arranging public meeting with Labour keen to speak and other members of the disability community.

Information about this will be sent out once we have a date and venue.

Once again thanks to the Invercargill community for getting the hard work done!

25 attended. Everyone went for a cupper afterwards at Main Street Café.

Last Updated 03/05/2024

RESOURCES

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Day 43 - Substack - We are battle weary, but we are not defeated

"We are battle weary, but we are not defeated"

This is our war cry ✊🏽

By: Rebekah Corlett MNZM

Reasonable Accommodations with Rebekah: May 02, 2024

This is a copy of my speech made on Sunday 28 April, 2024 at a public meeting to discuss the recent changes to Disability funding, hosted by Labour NZ and local MP for Mana, Barbara Edmonds. Other speakers included Joanne Dacombe from Disabled Persons Assembly (DPA), Occupational Therapist Jamie Blank and Tim Keats from Public Service Association (PSA). Also speaking were Labour leader Chris Hipkins and Disability Issues spokesperson Priyanca Radhakrishnan.

INTRODUCTION

·      I’m speaking today from my experience as a parent and primary caregiver. My husband is at home today with our two children, ironically because we don’t have a carer to call on.

·      Our eldest child Sophia is 15, autistic, non-speaking, she uses assistive technology/AAC to communicate.  

·      We initially used carer support, and a few years ago we switched to Individualised Funding after being told it was a more flexible support for Sophia as she got older. For many reasons, employing a care worker is not an option for us. I won’t stand here and justify those reasons, because I feel like I’ve had to justify myself as a carer far too much lately, thanks to Penny Simmonds.

·      When the flexible guidelines were applied during covid we were able to use her funding to extend her interests in music, gardening, at home and her love of nature and animals out in the community, with a mixture of natural and additional supports - creating a good and fulfilling life for her and access a bit of respite for me as well. Nothing extravagant mind you - no overseas holidays, no lottos, no ciggies, but the occasional contribution to a night away when I could get a short but effective full body-mind reset.

·      As of the 18th of March 2024 we were no longer able to access  funding for any of the things that made Sophia’s life fuller, I can’t access any respite to support my own levels of wellbeing either. The revised guidelines no longer mentions carers or their respite needs

·      Sophia’s talker is her voice. Where she goes, her talker goes. Thanks to the changes to Equipment Maintenance Services (EMS) - if her talker is ever damaged we might not be able to get funding to have it fixed or replaced, which is cruel, terrifying and in breach of a persons human right to communication, enshrined in the UNCRPD – a founding document of Whaikaha.

·      Minister of Disability Issues Penny Simmonds said at the time that these were not funding cuts, just a revision of purchasing guidelines ...but when you make the criteria for funding so impossibly hard to meet that it remains untouched, week after week, it is US as carers are forced to make the cuts ourselves.

·      The first week after the announcement, I was constantly in tears worrying how we were ever going to make it work. I had to make a list of all her funded supports and work out which ones we can keep, paid from our own pocket. Let me tell you, it was a very short list by the end of it. We are a one income household, the Child Disability Allowance doesn’t cover much in a cost of living crisis. We have also felt the impact of the end to free prescriptions & public transport.

WHY ARE WE HERE?

·      We as parents and carers can’t strike , we can’t just walk off the job in protest. We have no Union to champion our cause.  This is not simply a 9-5 job - this is our life 24/7

·      We love our children, we sacrifice our own health and wellbeing for theirs, without hesitation. For years we have filled the gaps in unsupportive health and education system, stepping in as educators and therapists to enable our children to thrive. Whatever it takes. But do not mistake our kindness for weakness!

·      We are here because were ALL betrayed by our (recently demoted) Minister of Disability issues Penny Simmonds – she threw us all under the bus the first chance she got.  She is a parent and carer herself, yet still used her platform to say carers misused disability funding, but is yet to provide any proof, by OIA request or otherwise!

·      She claimed carers had used funding to buy cigarettes, alcohol and lotto tickets. Lady, the only lottery we play is the ‘postcode lottery.’ And we are not winning!

HERE’S WHAT WE WANT PEOPLE TO KNOW

·      WE did not blow Whaikaha budgets. We had pre-approved annual budgets that are monitored, and purchases are gatekept so tightly by our service providers, we have to justify every fidget spinner, every solitary morsel of support. If someone managed to claim successfully for a bottle of Lindauer, a packet of winfield reds and a Triple Dip – thats on their service provider, not us. Why vilify and punish all of us, based on an anomaly.

·      Self Care and Respite are valid as expense claims. Carers are hard working and worthy of support.

·      A massage could help a carer who has a physically demanding role, an airfare could be to connect with family who can provide care. And an occasional spa treatment or night away can do wonders for a stressed parent or carer, and much more cost effective than the cost to the health system when they experience burn out, or worse in the future. Minister Simmonds gave no context to her examples of manicures and haircuts which was unfair on carers, who live a far from lavish, pampered lifestyle.

We now have two ‘opportunities’ for funded respite now

1.      Become an employer (complete with the responsibility of recruitment, meeting tax requirements, kiwisaver etc) of a carer OR

2.      Send our child to a respite care facility, or a day program (if you have a local, inclusive and accessible option) on their own to be supported by strangers

·      These are not viable and/or safe options for many families.

·      It is a step in the wrong direction, back to the days of institutionalisation and the charity/medical models of disability. Back in the days when sending disabled loved ones away from home, their whanau, their turangawaewae was the norm. That should never ever be ‘the norm’ ever again.

·      Have we learnt nothing from the royal inquiry on abuse in state care?

OUR CALL TO ACTION

·      Penny Simmonds was the minister at the time of this shambles needs to apologise to carers – not the new minister, she did not cause the harm. Do the right thing and apologise to your community

·      Disabled people and their whanau/carers need to be involved in decisions impacting us from now on. Nothing about us without us!

·      This is our time to raise our voices. Please find a platform you are comfortable with – letter writing, social media content, face-to-face conversation with your local MP, whatever works best for you. Bring your whole self and your voice, whatever form it comes in and share your experiences and feelings with no fear.

·      WE demand flexible and individualised be the standard issue for disability funding, to reflect the fact that every person and their need for support is different, and that carers deserve access to funding for their own self care/respite needs.

BECAUSE...

·      WE all deserve a good life. A full and happy life.

·      But we are tired, and we can’t do this alone.

·      We need cross party support, because this coalition government are clearly not interested in working with us, or listening to us. They are solely focused on financial gains, with no care for the collateral damage along the way. We are battle fatigued, but we are not defeated.

·      This is not the end. This is a beginning. Think about all the barriers you have faced and overcome in your lives. These penpushers and politicians (no offence) have nothing on your lived experience, and our shared strength is so strong they should be quaking in their boots! Carry that with you when you leave this hall today. You can move mountains, and you have your community behind you every step of the way.

Ake Ake Ake! As long as it takes

Last Updated 05/05/2024

RESOURCES

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Day 26 - Nelson Mail - 'At breaking point': disability community’s anger over cuts

'At breaking point': disability community’s anger over cuts

By Amy Ridout

Nelson Mail: 15 March 2024

“We’re tired of fighting”: That was the clear message from Nelson’s disability community at a public meeting to discuss disability funding cuts.

Almost 100 people, the majority women, met with Nelson Labour MP Rachel Boyack and Labour’s disability spokesperson Priyanca Radhakrishnan at Greenmeadows Pūtangitangi Centre on Monday afternoon.

Previously, Whaikaha the Ministry for Disabled People funding gave families a two-year budget set by the ministry to help disabled people live full lives. Their whānau could spend that money on equipment, such as wheelchairs, or on respite care.

Without warning on March 18, the ministry announced immediate changes to its purchasing rules "to clarify how people can use their disability support funding”. The ministry said the changes were due to financial pressures on Government departments.

Boyack said she’d been contacted by Nelson residents who were “upset, angry, frustrated and confused”.

Radhakrishnan, the former Minister for Disability Issues under Labour, said she had fielded around 200 “devastated” messages from disabled people and their carers, worried about meeting costs for respite care, travel and insulin pumps.

“People are tired of fighting for every little aspect of support, they feel they’re now at breaking point,” she said.

One woman, visiting Nelson from Palmerston North with her son, said the funding had meant her whānau had started to “taste freedom from oppression”.

“We will not fit back in that box; we can’t go back,” she said. “Every single rule takes us further and further away... taking us back towards institutionalisation.”

She suggested parents of children with disabilities take their children to parliament.

“Give them a taste of what day-to-day is like.”

One mother of a teen said she’d discovered the news on Facebook.

“There was no formal letter to say your carer support is changing ... There must be families out there who have no idea this has happened.”

Radhakrishnan’s suggestion of writing to your MP to protest the change was met with opposition from one parent.

“We’re tired of fighting,” she said. “We have been fighting all our lives, every step of the way, it’s not fair.”

The threat hanging over Maitai School was also raised by Boyack and several parents. On April 4, the government announced plans to build a new base for the special educational facility were in doubt, which would leave a quarter of the school’s students with nowhere to go next year.

“I don’t know what we’re going to do,” said one parent, whose son had flourished at the school.

- Nelson Mail

Last Updated 15/04/2024

RESOURCES

• Maitai School

Day 19 - NZLP - Public meeting about disability support funding changes – Auckland

Public meeting about disability support funding changes - Auckland

You’re invited to a public meeting on the recent changes to disability support funding announced and implemented on 18 March.

When: Saturday 13 April, 1pm to 3pm

Where: Hillsborough Room, Fickling Centre, 546 Mt Albert Road, Three Kings, Auckland

Registration: not required. However, if you are attending to represent an organisation, please let the team know by emailing: Priyanca@parliament.govt.nz

Accessibility: wheelchair access, NZSL interpreters

Light refreshments will be provided.

The meeting will be hosted by Hon Priyanca Radhakrishnan, Labour’s spokesperson for disability issues. This is an opportunity to share your thoughts, ask questions and hear from people from disability communities.

For further information, please email: Priyanca@parliament.govt.nz

Day 9 - The Southland Times - Families will pay the price for reckless tax cuts

Families will pay the price for reckless tax cuts

By Ingrid Leary

The Southland Times. March 27, 2024, • 10:00am

Ingrid Leary: “I have been inundated with messages from disabled people and their carers in the Taieri electorate.”

Hamish McNeilly / Stuff

Ingrid Leary is the MP for Taieri.

OPINION: Decisions that governments make about what to fund and what to cut tell us a lot about their values and priorities.

I have been inundated with messages from disabled people and their carers in the Taieri electorate who have been traumatised by the callous cuts this Government is making to their support.

Make no mistake: the sudden change to the criteria is nothing but a cut to services that are essential for the wellbeing of members of the community.

We have large numbers of people affected by this across the deep south, some of whom choose to live here because the flat terrain is more accessible for disabled and senior people.

It is patronising for the minister, Penny Simmonds, to say that those who look after their loved ones 24/7 need to be told what services are best for them.

These are people who in many cases do heavy physical lifting, experience sleep deprivation and need respite, physiotherapy and other services to support them with their essential care work.

To imply they are living the high life at the expense of taxpayers is deeply insulting – especially coming from the minister, who is supposed to be the champion of this community.

Decisions were made without consultation and communicated appallingly on a website, leaving people confused and distressed.

It is clear from Question Time in the House last week that the minister signed off the changes and did not seek bridging finance to support people’s needs. Instead of blaming the hard-working officials at the ministry, she should take responsibility and apologise to the disability community.

Meanwhile, Christopher Luxon and the National-led Government are continuing with their reckless tax cuts, no matter the cost – and it is families who are going to pay the price.

Kiwi households have been dealing with the cost-of-living crisis for some time now, and yet in the months since the three-party coalition came to power, we haven’t seen a single policy that can ease that pressure.

Instead of half-price public transport or making most prescriptions free, the Government just spent an estimated $3 billion on landlords over four years and is still planning tax cuts that won’t benefit working people in the way that was promised.

This is about choices. At the same time as planning cuts to the school lunch programme and refusing to commit to reinstating flexibility with funding for disability support, the Government is choosing to prioritise landlords.

During the election campaign, economists warned National that its numbers didn’t add up. But the party ploughed ahead anyway, making irresponsible political promises despite the warnings. National told New Zealanders that its promises were affordable, and it could balance the books just by cutting back on “wasteful spending”.

This Government has rolled back workers’ rights, taken support out from underneath everyday Kiwis including some of our most vulnerable people, and reversed our smokefree laws – all while dishing out cash to landlords.

The Government’s priorities are backwards. When the prime minister doesn’t see the problem with taking $1000 a week he doesn’t need while telling others to save money, it’s clear where these decisions are coming from.