Day 271 - An ‘awful’ year of cuts and heartbreak for disabled community

An ‘awful’ year of cuts and heartbreak for disabled community

By: Maddy Croad

The Press: Sunday, 8 December, 2024

Disabled people, carers and whānau took to Christchurch’s city streets in protest of an ongoing lack of consultation from the Government.

Maddy Croad

Disabled people, carers and whānau took to the streets of Christchurch to protest against the Government’s lack of consultation with the disabled community for the past year.

The rally was organised by non-profit organisation Disability Leadership Canterbury in response to the “enormous” toll disability funding changes were having on the people in Christchurch.

This is the second time this year that the disabled community has gathered at the Bridge of Remembrance to protest for their rights.

Members of the disabled community gathered at the Bridge of Remembrance and made their way down the inner city centre.

Maddy Croad

In March, former disability minister Penny Simmonds, who had since been stripped of her role, announced sudden changes to disability funding.

It left disabled people, carers and whanau unable to access funding for support such as travel, respite and physical aids like tablets and phones.

In August, disability minister Louise Upston removed Whaikaha - the Ministry of Disabled People’s funding responsibilities, handed them to the Ministry of Social Development, and downsized its staff and funding in the process.

The nationwide rollout of Enabling Good Lives - a partnership between government and the disabled community to gain more control over their lives, was also paused.

Tash Eyres’ had singing lessons for eight years to help with her intellectual disability, but the funding for the lessons was cut.

Maddy Croad

Tash Eyles went to the same singing class for eight years as an outlet for her intellectual disability. Her funding was cut earlier this year and she can no longer afford to go.

“It’s actually broken my heart. It was really important to me, I love performing, it was just part of who I am.”

She said this year had been “awful”.

Marty Vanderkley, who has spina bifida, had gone to the rally in his wheelchair so “disabled people have their voices heard”.

He said he felt uneasy about what other changes could happen in the year to come.

Marty Vanderkley says he believes all disabled people’s voices deserve to be heard.

Maddy Croad

“The disability funding cuts are having a wide impact across a whole range of people in all sorts of way and all walks of life, right from early intervention right up to the older disabled population,” he said.

Disability Leadership Canterbury chairperson Ruth Jones said many of their members did not see the point of leaving their home any more.

“This whole year has felt as if we’re living in 1974 - our whanau and support people are unable to use funding to catch a break, and members of the disabled community feel disempowered, helpless, and anxious.

“We feel like we’re being deliberately harmed and no longer have any autonomy in our own lives.”

Researchers who have supported Whaikaha, from left, Dr Catherine Leonard, Dr Lesley Campbell and John Leonard.

Maddy Croad

Disability Minister Louise Upston said during the Whaikaha review she conducted “targeted engagement” with the disability community to seek their feedback.

She said changes announced earlier this year were “necessary” to tackle problems such as overspending and unsustainable costs.

“The Government has not yet made any decisions regarding eligibility criteria for flexible funding, and this will not happen until there has been a period of consultation with the disability community.”

Dr Catherine Leonard, along with other members of research teams that support Whaikaha, attended the rally. She said there had not been enough research behind the Government’s decision-making.

Disability Rights Commissioner Prudence Walker says she hopes the commitments Disability Minister Louise Upston has made will be upheld.

Maddy Croad

“There’s a lack of tangata Whaikaha and disabled people’s voices in those decisions. They should be a big part of making decisions for themselves,” she said.

Disability Rights Commissioner Prudence Walker said she hoped the commitments made by Upston to have a “responsive disability support system” would be upheld next year.

“I would really like to see that that does involve disabled people in the decisions that affect us.”.

Last Updated 10/12/2024

RESOURCES

• https://www.thepress.co.nz/nz-news/360514310/awful-year-cuts-and-heartbreak-disabled-community

• Disability Leadership Canterbury

Day 173 - Video of Taranaki Disability protest in New Plymouth

Friday, 6 September, New Plymouth.  A protest march from Puke Ariki landing to David MacLeod's (MP for NP) office.

By: Filmed by Bryan Vickery

Bryan Vickery Media: Friday, 6 September 2024

Last Updated 9/09/2024

Resources

• https://www.youtube.com/watch?v=NvAzfnnq9HM
• https://www.facebook.com/BryanVickeryMedia

Day 97 - The Press - ‘I have never felt as disabled in my life’: Disabled community to rally against funding changes

‘I have never felt as disabled in my life’: Disabled community to rally against funding changes

By: Mariné Lourens

The Press: 24/06/2024

Christchurch resident Nevé Billing has had major vision impairment since she was 5 years old.

Photo SUPPLIED

Christchurch resident Nevé Billing, 26, has had major vision impairment since she was 5 years old.

She is legally blind due to damaged optic nerves, but has never let her disability hold her back. She recently finished a business degree and is working part-time jobs while she looks for a full-time role.

Because of her vision impairment, Billing is highly dependent on Uber and other taxi services to get where she needs to go.

However, after Whaikaha, the Ministry of Disabled People, without warning announced cuts to disability services in March, she is no longer able to use her funding for transportation.

A protest was held in Christchurch in March this year after the announcement by the Ministry of Disabled people about the changes to its funding.

“I have never felt as disabled in my life,” Billing said.

“I like living independently and I don’t like relying on people, so if I can’t get a ride with someone else, I am just trapped at home.”

Whaikaha earlier announced it was changing purchasing rules for disabled people and their carers, limiting what disabled people can buy with their funding.

Since then the ministry has provided clarifications on the rules, including that ride and driver services can be used only “to access services or engage with the community, where this is a reasonable and cost-effective option”.

Billing said she didn’t think the people making the funding decisions realised how much disabled people relied on the funding to support them in ways they needed to be supported.

She said she had been dealing with visual impairment for most of her life and had always found “workarounds”, such as using her disability funding to get around independently.

“Now that I don’t have that anymore, it has made me feel extremely isolated and like I’ve lost my freedom and independence.”

Billing will join other Cantabrians with disabilities and supporters at a Disability Leadership Canterbury rally in Christchurch on Monday to protest against the funding changes and what she sees as marginalisation of the disabled community.

“The rally is to show that we are not going to just sit back and take this. They need to relook at the decisions that have been made around the purchasing guidelines.”

She said she couldn’t see any issue with the way the funding was structured before, and believed the changes were simply a way to make it more difficult for disabled people to access funding support.

“I don’t see why every disabled person can’t use the money that has been allocated to them for the things they know they need.”

Last Updated 25/06/2024

RESOURCES

• https://www.thepress.co.nz/nz-news/350320442/i-have-never-felt-disabled-my-life-disabled-community-rally-against-funding

Day 47 - The Press - Children with autism excluded from school due to lack of teacher aide funding

Children with autism excluded from school due to lack of teacher aide funding

By: Maddy Croad

The Press: May 6, 2024

Apollo, 9, has autism. He has been stood down and sent home from school several times due to behaviour he cannot control.

JESSICA SHORT

Children with disabilities are being excluded, stood down and sent home from school because of insufficient funding for teacher aides.

Schools say they do not get enough government money to pay for the specialist help, and are often forced to dig into their own pockets to make up salaries.

But much of the time this isn’t enough, leading to children with disabilities being forced to stay at home.

One teenage girl can only go to school for three hours a day, leaving her mum fearing her daughter will never be able to leave home.

Meanwhile, Jessica Short's 9-year-old son Apollo, who has autism, does not understand why he cannot go to school when his younger sister leaves in the morning.

After moving schools, being stood down more times than Short can count and with the new school only able to provide a teacher aide for 40 hours a year, Apollo was approaching an exclusion. Short pulled him out of school before it went on his permanent record.

The school also phoned Short several times a week,telling her she had to pick her son up due to his behaviour. She was forced to quit her job.

According to the Education and Training Act 2020, all students under 16 must attend school each day, and children with special educational needs and disabilities have the same attendance rights as other children.

However, according to a Ministry of Education report in 2020, students with disabilities were found to be between 1.5 and three times more likely to be stood down and suspended.

Velda Chan, a lawyer at Youthlaw, said principals should not be standing down or suspending students with disabilities.

“There is a guide given to schools. For gross misconduct it asks the principal whether the misconduct was blame-worthy.

Rolleston College principal Rachel Skelton says schools do not receive enough funding to pay for teacher aides to support children who need them.

ALDEN WILLIAMS / THE PRESS

“If you’re doing something as a result of your disability then you’re probably not blame-worthy, you didn’t intend to do those things.”

Chan said it was illegal to send children home part-way through the day, including parents being called to pick up children, or being told children can only attend for certain hours.

Payson Alsop, 13, has experienced both of these things since starting school.

Despite having autism, she has been excluded and stood down several times.

Like Short, Payson’s mum Mckayla Walker had to quit her job because she was frequently called to pick her daughter up from school.

Payson, who now attends Rolleston College, was told she could only attend school for three hours a day as a teacher aide was only funded for 30 hours a year. The school covers the rest.

“She’s probably never going to leave home,” Walker said.

Rolleston College principal Rachel Skelton said the school was not given enough funding to cover teacher aide salaries.

“Funding for teacher aides is challenging due to the fact that funding providers do not pay schools at the rate that the teacher aides are paid,” she said.

“Schools cannot actually afford to staff learners with the funding they are allocated due to this short-fall.”

According to Careers New Zealand, pay for a beginner teacher aide is $23 an hour, but for specialist teacher aides it ranges from $25-37 an hour. The Ministry of Education funds $23 an hour for schools with more than 150 students.

Rolleston College has tried to help Payson Alsop attend for longer, according to mum Mckayla, but it can only fund her teacher aide for so long. Principal Rachel Skelton, pictured, says funding teacher aides is “challenging”.

IAIN MCGREGOR / THE PRESS

Grant Pollard, the ministry’s leader of operations and integration, said the funding was a “contribution”.

“As the employer, the schol boards make employment decisions for staffing that best fit their environment and the needs of students,” he said.

New Zealand Education Institute president Mark Potter said no child was totally resourced, and in most cases schools had to pick up all or part of the cost of supporting a child.

“The whole idea is that the system should be designed around the child, but often the child has to wrap around the system,” he said.

“The system is disabling the children, because it’s not equipping the schools and the teachers with enough or the right skills, tools and support.”

NZEI president Mark Potter says the system is failing students with disabilities.

BRUCE MACKAY / THE DOMINION POST

One mother, who wished to remain anonymous due to her position, said she had seen both sides of the system. She has three children with autism under the age of 16 and is chair of her school’s board of trustees.

Two of her children have been stood down before, both for “gross misconduct”. But she does not blame the school.

“You can see how hard the schools are working and that isn’t their fault. Schools pay extra money to bring in teacher aides, the ministry has offered no support to help my kids attend full-time.”

As chair of her board of trustees she deals with children who have been excluded from school, and said the majority are children with traumatic backgrounds or who are neurodivergent.

“These are kids that could succeed in life if they are given the right support. If they're constantly being stood down or reprimanded for their behaviour that they can’t actually control, that’s a pretty sad situation that we are in.”

Because Walker and Short’s children are high functioning and “smart,” they do not meet the threshold for ongoing resourcing scheme (ORS) funding, which provides support for students with the highest level of need for specialist support.

They both have a single income in their households and children who desperately want to go to school but cannot. They feel their only option now is homeschooling.

- The Press

Day 11 - The Press - I shouldn’t have to fight for my rights’: Disabled community protest changes

I shouldn’t have to fight for my rights’: Disabled community protest changes

Click here to watch or listen to the video of interviews by Maddy Croad

By Maddy Croad THE PRESS March 29, 2024

A disability funding protest was held after the recent announcement by the Ministry of Disabled people, making changes to the funding.

Those in the disabled community said they were blind-sided by the changes and don’t know how they will cope.

Many disabled New Zealanders, carers and families gathered in Christchurch on Thursday, protesting the recent changes in funding made by Whaikaha, the Ministry of Disabled People.

The changes, which were put into effect without warning on March 18, meant many people were left unable to access funding for support such as travel, respite and physical aids like tablets and phones.

Jordan Langley, who organised the protest, was taken aback by the turnout of supporters.

Being legally blind himself, funding changes meant he can no longer get support to travel, leaving him isolated.

“I feel like I should be able to travel outside of my community. I cannot drive a car, I have to be independent.”

Lorraine Wiersman’s daughter Ella has cerebral palsy. Funding has allowed Ella to do things with her family such as walk the dog or visit the beach.

CHRIS SKELTON / The Press

Lorrain Wiersman’s daughter Ella, has cerebral palsy, meaning she has a full-time carer and a high level of needs.

She said they previously used Whaikaha funding to buy a machine that gets Ella and her wheelchair onto the beach. The funding changes mean the family can longer afford support like this.

“We’ve been living for the past week or so with uncertainty about how I can support my children now,” she said.

“When these people don’t do their jobs, their jobs go to us.”

Support worker Donna Clarke has been Ella’s support worker for 20 years. Everything she previously had covered by Whaikaha funding, is now gone.

CHRIS SKELTON / The Press

Ella’s carer, Donna Clarke, also attended the protest, holding Ella’s hand while she spoke.

She has been with Ella for 20 years, and now doesn’t know how Ella will cope.

“I was shocked, it was just out there and we never had any idea it [funding changes] were coming.”

Ella used funding for therapy such as mirimiri, a traditional Māori massage to reduce depression and anxiety, as well as an Ipad so she could connect with friends like “any other 26 year-old,” said Clarke.

“Her funding covered that, it won’t now.”

Many protestors called for Minister for Disability Issues, Penny Simmonds, to resign, largely based on how she made decisions regarding funding without community consultation.



The common theme of the protest was the resignation of Minister Penny Simmonds. “She's so far away from knowing what the needs are for people with disabilities,” said Wiersman.

CHRIS SKELTON / The Press

Similar demands were recently made by Labour Party leader Chris Hipkins, after National changed decision-making criteria to require cabinet consultation first.

“It is an extraordinary step and a massive vote of no confidence for Cabinet to intervene because a minister is failing to make decisions in her own portfolio ... Christopher Luxon should remove her as a minister altogether,” said Hipkins.

With a barrage of disabilities such as autism, epilepsy, PTSD and hip dysplasia, Nick Stoneman knows how important Whaikaha funding is.

He used to use the funding to get therapist appointments for his hip dysplasia, a defect he has had since birth, now he is forced to sit in pain.

“I’m struggling. If I don’t have my treatment I just have to suffer and that’s so wrong,” he said. “It’s 2024, I shouldn’t have to suffer, I shouldn’t have to fight for my rights.”

Protestors wanted funding changes to be reversed, and the Government to consult the disability sector.

CHRIS SKELTON / The Press

Like Hipkins, he and other protestors called for Penny Simmonds to go.

“We need her to resign from the portfolio, because we need a minister that actually wants to be there and wants to listen to our voices.”

“I don’t even think she knows what these guys need in their lives,” said Clarke. “Hopefully all this may make her think again.

As for Wiersman, who still remains in limbo over how her daughter can be supported, she had a clear message for the Government.

“You do your jobs so we can do ours. We just want to be parents.”

Many in the disabled community want an apology. If not, they say they will continue to make their voices heard. “We’ll get louder and we’ll get stronger,” said Stoneman.

CHRIS SKELTON / The Press

Media - The Press

The Press is a daily newspaper published in Christchurch, New Zealand, owned by media business Stuff Ltd. First published in 1861, the newspaper is the largest circulating daily in the South Island and publishes Monday to Saturday. One community newspaper-Northern Outlook-is also published by The Press and is free. Wikipedia

Owner: Stuff, Fairfax Media

First issue date: 25 May 1861

Circulation: 37,002 (2019)

Editor: Kamala Hayman

Format:

• Compact (weekday)
• Broadsheet (Saturday)

Headquarters: Christchurch, New Zealand

ISSN: 0113-9762

Reporters Maddy Croad

RESOURCES

• www.thepress.co.nz

• List of articles about the funding cuts

• Wikipedia

Day 5 - The Press - Disempowering and dehumanising’: Whaikaha funding cuts through eyes of affected

‘Disempowering and dehumanising’: Whaikaha funding cuts through eyes of affected

By Maddy Croad 

The Press, March 23, 2024

Click to the original article to watch the video

Thousands were left shocked earlier this week when Whaikaha, the Ministry of Disabled People, announced it was placing restrictions on disability funding. The changes mean many disabled Kiwis can no longer access funding. Two affected Christchurch locals share their story with Press reporter MADDY CROAD.

Pictured at their New Brighton home are Shary Bakker and Andrew Cockell, with two of their children - River Bakker, 7, and Mira Bakker, 5 - who are both autistic and have high needs.

PETER MEECHAM / THE PRESS

Shary Bakker is a Christchurch mother with three autistic children.

On March 18, I was woken up by two of my primary school-aged autistic children. One, still toilet training, needed a nappy change. The lights flicked on and her brothers groaned and screamed as they woke up. Another day began.

As I entered the living room, I could hear my autistic teen bouncing on our trampoline. She was wearing her noise cancelling headphones, which we paid for with Whaikaha disability funding, to calm herself. Before we had the trampoline, also Whaikaha funded, my daughter engaged in frequent self harm, smashed things, cried and ripped curtains as she tried desperately to regulate her emotions.

At 11.52am I received a text from my friend. “Have you seen the changes they’re making to disability funding?”

I frantically searched for information. Finally, I stumbled upon a social media post showing Whaikaha’s changes. My heart sank. I don’t know which feeling was stronger, anger or devastation. With Whaikaha’s changes, my three autistic children had been abandoned.

The disabled community fought for years for flexible funding. Unlike the announcement from Whaikaha, these changes did not happen overnight. Flexibility came with restrictions, including proof that purchases met four criteria. It was not an open cheque book, as Minister for Disability Issues Penny Simmonds implied.

I am a teacher and cannot work full-time due to my children's disabilities, resulting in a loss of income. My husband is forced to work from home.

My children used to have a carer, so my husband and I could have respite. She quit over a year ago and we haven’t been able to find a replacement since. While we could no longer take a break from the kids, flexible funding could still allow us to buy items such as timers for transitions, compression singlets and weighted blankets. All of which comforted the kids and calmed the household.

River Bakker and Mira play on the trampoline at home in New Brighton. The trampoline was paid for with Whaikaha disability funding.

PETER MEECHAM / THE PRESS

We purchased wiggle carts to help our kids balance; we could also finally send them to swimming lessons in smaller groups.

Our ‘individualised funding’ was life-changing by making us feel less isolated as parents of autistic children. More importantly, it helped our children thrive.

Whaikaha’s sudden changes have destroyed the progress we have made.

Forcing the vulnerable to struggle cannot bring benefit to New Zealand. Don’t we want a country where everyone thrives? Because it seems this current government doesn’t.

Marama Gravett is concerned about cuts to disability support.

KAI SCHWOERER / THE PRESS

Marama Gravett has a hypermobility disorder that causes her joints to easily dislocate. She uses a power wheelchair to get around.

When the news of the Whaikaha changes came out on March 18, people in the disabled community were shocked and upset. I’m concerned, however, that much of the narrative has been focused on carers, rather than the disabled people themselves.

That’s not to say that carers are not important, nor that they do not deserve support. But when talking about disability issues, it’s important to focus on disabled people. It feels disrespectful and dismissive to talk about us, and not with us.

I was planning to use some funding to fund hand-control vehicle lessons. My only option now is catching a bus. There have been times where I have gone to get on a bus and it’s too full for me. A power wheelchair cannot fit in most cars, so I cannot ask a friend for a lift.

I have funding to allow me the autonomy to determine my own support. That autonomy has now been taken away from me. I have been told that all I can do now is hire a support worker, to give me a break from myself.

Gravett says the cuts “shocked and upset” many in the disabled community.

KAI SCHWOERER / THE PRESS

Some of us neither need nor want carers as that is not what will support us to be happy and fulfilled individuals. The point of individualised funding was just that - individual - to put the power back in the hands of the disabled. That power has now been taken away. We have been told what is supportive, instead of being allowed to determine that for ourselves.

It’s wrong, it’s disempowering, and it’s dehumanising.

In a press release from minister Penny Simmonds on March 20, she said: “No disabled person to lose essential services.” I am here to say that I am a disabled person, and yes, we will.

She continued to say: “We intend to ensure that funding gets directly to where it is needed.” I can say I am a disabled person and it won’t.

The funding changes will take independence away from people with disabilities, Gravett says.

KAI SCHWOERER / THE PRESS

Day 5 - The Press - Disability and dysfunction

Disability and dysfunction

The Press March 23, 2024

Disability Issues Minister Penny Simmonds upset many in the disability community.

ROBERT KITCHIN / THE POST

EDITORIAL: The Government should have been shaken by the reaction to the shambolic announcement of disability support cuts this week. The sudden intervention of Finance Minister Nicola Willis suggests it was, and hopefully lessons will be learned about the limits of budget cuts and the very real human impact that follows.

When National was in opposition, and openly warning of significant

....