Day 172 - Taranaki Daily News - Disability community marches in protest against Government changes

Disability community marches in protest against Government changes

By: Helen Harvey

Stuff: 5 am, Saturday 7 September 2024

Elisabeth Mullen, 11, told marchers she was more than just someone who couldn’t walk.

VANESSA LAURIE / STUFF

Chants of “nothing about us without us” and “disability rights are human rights” rang out through New Plymouth’s CBD on Friday as more than 200 people from the disability community marched along Devon St.

The march ended outside the Gill St office of New Plymouth National MP David MacLeod, who wasn’t there as he had a bereavement.

Once there several people with disabilities shared their stories as did those who cared for them.

Elizabeth Mullen, 11, told the crowd she had cerebral palsy, which meant she couldn’t walk.

The disability community came together on Friday to march through New Plymouth’s CBD to bring awareness to the issues they’re facing as a result of recent government policy changes.

VANESSA LAURIE / STUFF

“But that doesn’t mean I can’t do a bazillion other things. Let me live my life. I am more than just not being able to walk.”

Quinn Jones, 8, spoke about his brother Nash, 7, who has Lesch Nyhan Syndrome, which causes intellectual disability, and other issues, including severe arthritis, and poor muscle control.

Quinn told people how hard it was for Nash.

The group were protesting Government changes to funding and support that were made without consultation or warning.

Harry Harris, who is visually impaired, said they wanted basic human rights that everyone else took for granted.

VANESSA LAURIE / STUFF

In August, a restructure of Whaikaha- Ministry For Disabled People was announced. Whaikaha will lose responsibility for delivering support services, and the move to the Enabling Good Lives approach will be put on hold.

This follows on from changes to individualised funding that were made without notice in March. Pedicures, massages and some funding for respite were among the cuts.

Harry Harris, who is visually impaired, said a pedicure is not a luxury.

“It’s a basic necessity of life. We want basic human rights that normal everyday people take for granted. Many of us can’t reach our toenails.”

Some people needed a pedicure before their toe nails got infected and they ended up with gangrene, Harris said.

March co-organiser Francine Jones, and Quinn, 8, look after Quinn’s brother Nash, 7, who Lesch Nyhan Syndrome.

VANESSA LAURIE / STUFF

March co -organiser Francine Jones said she needed a monthly massage because her son, Nash, weighed 22kgs.

“He's a dead weight, and I'm lifting him all the time. And my body is freaking sore, you know? He can't do anything for himself, ever.”

And spending some funding on getting a hotel room occasionally, if they can get care for Nash for the night, was important not only for her relationship with her husband, Nathan, but for their other children, Jones said.

“Making the time so that we can actually spend one on one good time with them as well, because their lives are frigging hard.”

She was devastated when she heard about the changes, she said.

“It's causing a huge amount of anxiety.”

Co-organiser Victoria Coleman said the Government was making decisions that massively affected their lives without talking to them.

VANESSA LAURIE / STUFF

The march was organised because she had been talking to many people who were affected by it and were very stressed.

Co-organiser Victoria Coleman, whose son Levi, 5, has Down syndrome, autism and two rare bowel disorders, said they want back what had been taken away.

“They've taken away our rights that were fought so hard for. I mean, this is a fight going back decades. People put themselves on the line, put their bodies on the line. It looked like the world was changing. And now we've been shot back to the dark ages.”

The Government was making decisions that “massively impact people's lives”, taking away their freedom, taking away their choices and their independence, Coleman said.

“And they've done that without speaking to us personally. For me, it's too late for consultation. They need to reverse the changes they've made and then talk to us.”

- Taranaki Daily News

Last Updated 08/09/2024

Resources

• https://www.stuff.co.nz/nz-news/350406041/disability-community-marches-protest-against-government-changes

Day 168 - Taranaki Disability Rights Protest.

Taranaki Disability Rights Protest.

By: Victoria Coleman

Friday, 6 September 2024. 11 am. Meet at Puke Ariki, 1 Ariki St, New Plymouth. March to the office of David McLeod, National Party MP.

In the video below, five affected people explain the importance of this protest: Fracine Jones, Victoria Coleman, EJ Barrett, Craig Nielsen, and David Prentice.

Last Updated 3/09/2034

Resources

• https://www.taranakidic.org.nz

Day 168 - Taranaki Daily News - Carers were already struggling and then came the disability funding cuts

Carers were already struggling and then came the disability funding cuts

By: Victoria Coleman

Taranaki Daily News; 5 am, Tuesday 3 September

Victoria Coleman is a New Plymouth mother-of-two and staunch advocate for the disabled community.

OPINION: The previous Disability Minister Penny Simmonds would have you believe as carers of family members with disabilities we are off having pedicures or massages at leisure.

But, believe me, nobody is sitting at home getting rich caring for their disabled family member and revelling in the peace and quiet.

We’re struggling. The little support we do get means we are usually only just managing, if that.

The first few years as new parents with our son were a struggle beyond anything I have ever experienced in my life.

Victoria Coleman’s son Levi was born with Down Syndrome and two rare bowel disorders.

VANESSA LAURIE

Our son was incredibly unwell. He was born with Down Syndrome and two rare bowel disorders. He also has an Autism diagnosis.

Our early days as new parents were marred by endless uncertainty. We barely slept at all for the first four years.

We had to perform medical procedures for our son at home and he was up most nights, often all night, screaming in agony. No parent would wish this on their worst enemy.

If and when we did sleep, I was constantly scared that he would pass away.

I would urgently wake from the brief periods of sleep that I did get and quickly rush to him to make sure he was still breathing. We had to battle endlessly just to get our son what he needed, just for him to stay alive.

Our main support network for hands on support consisted of my elderly mother.

We are incredibly grateful for her care, but our son’s high needs are far more than what we should expect of an ageing person with her own increasing needs.

There was nothing available for us in the way of respite.

No care was offered from disability services to give us a break and make sure that we were all supported enough. We were told our son was too young for disability support funding, regardless of how high his needs were.

A couple of years ago we finally got some support in the form of individualised funding, which meant we could access some respite.

We finally felt like we were getting our feet on solid ground as parents of a disabled child and could take a breath.

But as soon as we had gotten our heads around how we could use flexible funding, the rug was viciously and cruelly pulled out from under us.

On March 18, the Government immediately removed the flexibility from disability funding, without notice, via a Facebook post. There was no formal communication to our community.

We were left scrambling to figure out how our household was going to function.

Do not be fooled by the Government’s claims that disability funding was being abused, and therefore this was a benevolent measure to ensure that disabled people are getting what they need.

This was absolutely a cost saving measure at the expense of people with disabilities and I have no doubt the Government believes if it can make the funding inaccessible and impossible to spend it can justify cutting it.

The disability community was hurt by this announcement, and in that moment our faith in this Government was destroyed.

I knew there were more attacks on the disability community to come. Predictably, the cruelty continued.

Just a few weeks ago, Disability Minister Louise Upston gutted Whaikaha, the very ministry that the disability community fought so hard for, and only got established two short years ago. Again, this was done entirely without consultation with the disability community.

The number of people requiring disability funding has increased significantly and funding has not been increased to meet this need.

But rather than giving Whaikaha and the disability community what it needed to succeed, the Government wanted to score brownie points at the expense of disabled people by labelling it a failure and pointing the finger at the previous government.

Nowhere in the “independent” review of Whaikaha was it recommended disability support services should be transferred to MSD.

Then came the leaked document which only showed the potential for more devastation.

The Government is considering restricting access to residential care, freezing funding and cutting existing funding packages. They propose to do this by pulling forward people’s annual review dates so this can happen immediately.

Families like ours are living in constant fear. I am sick to my stomach all day, every day and on the verge of tears worrying what will come next, while still trying to manage my caring duties. The mental load and distress these cuts are causing people in our community is immeasurable.

I am already frazzled and exhausted but every day I must also fight for my son’s most basic rights as a human being, in every aspect of his life.

I am scared they will come for his continence products next, cut his child disability allowance and take away the funding he does have.

I am afraid they will remove the funding managers who advocate for the disabled community daily.

Make no mistake, caring for a disabled child can be gruelling.

Most often, as our children get older it only gets harder and more demanding, and as we become older and less able ourselves, we still need to care for our adult child. I do not have the privilege of looking forward and thinking things will get easier, like most parents do.

Disability rights in our country have been pushed back decades by the Government in just a few short months.

We fear constantly for our son’s future and the future of every person living with disability in our country, while our very demanding work as whānau care givers is constantly and massively undervalued.

We do not deserve to live with being demonised and dehumanised by our Government too.

– A protest against changes to the Government’s disability funding will be held on Friday at Puke Ariki in New Plymouth at 11am.

- Taranaki Daily News

Last Updated 09/09/2024

Resources

• https://www.stuff.co.nz/society/350400559/carers-were-already-struggling-and-then-came-disability-funding-cuts

Day 47 - Taranaki Daily News - Celebration of New Zealand Sign Language highlights need for inclusion

Celebration of New Zealand Sign Language highlights need for inclusion

By: Catherine Groenestein

Taranaki Daily News: 5am, May 06, 2024

Chris and Chanelle Waite of Stratford are part of Taranaki’s small deaf community and use sign language as their first language, even with their three children, all of whom are hearing.

LISA BURD/TARANAKI DAILY NEWS

A Taranaki couple who have both been deaf since childhood don’t see it as a disability, and they’d like others to do the same.

This week is New Zealand Sign Language week, an annual celebration of the country’s third official language, which aims to dismantle barriers and foster inclusion for deaf people.

New Zealand Sign Language (NZSL) is the first language of Stratford couple Chris and Chanelle Waite, both of whom have been deaf since childhood.

“It’s just that the ears don’t work,” Chris said. “It’s not a disability, but more a different culture.”

The couple use NZSL at home and arrange interpreters to assist at some meetings and appointments with hearing people.

This interview was done with the assistance of an interpreter from Interpreting Services Ltd at Fonterra’s Whareroa site, where Chris works as a milk tanker driver.

Chris works as a tanker driver for Fonterra, covering Taranaki, Manawatu and Waikato.

LISA BURD/TARANAKI DAILY NEWS

He loves his job, which takes him all around Taranaki and sometimes to Manawatu and Waikato.

“I enjoy truck driving, I love working for Fonterra. I’ve been here 3½ years. It’s awesome to be able to drive and look at the view — fabulous,” he said.

Chris, who is one of about 170 drivers, communicates with his dispatcher and colleagues using text messages.

Chanelle is a photographer and advocate for the deaf community.

LISA BURD/TARANAKI DAILY NEWS

Whareroa depot manager Brent (Hoppy) Hopkins said because Chris was the first deaf tanker operator to be employed by Fonterra, there was some initial apprehension.

“We did a risk assessment and were able to tick all the boxes. It’s worked well, it hasn’t even been an issue” he said.

“It shows there shouldn’t be any roadblocks.”

Chris’ wife, Chanelle, who has struggled to find a job, has started a business as a photographer.

She is also an advocate for and influencer in the deaf community, with two social media platforms, one on TikTok and one on Facebook – both handles @signwithchaz

“[Getting employment’s] the biggest barrier for deaf people in New Zealand,” she said.

“It’s frustrating. I understand that in some workplaces there are health and safety things going on, but there are other ways to do things if you have a deaf person in your workplace.

“It would be good to see more accessibility for the deaf community, both in breaking down barriers and in the workplace.”

In Taranaki the deaf community was quite small, and not everyone uses sign language, she said.

Chris grew up in Stratford and Chanelle in New Plymouth, but they knew each other from attending Keep In Touch days, which are get-togethers organised by teachers of the deaf for students in mainstream classes and schools.

After leaving school they lost touch, but a few years later Chanelle was in Christchurch one day shopping with a friend, and noticed someone drive past and flash their car lights at her, which she thought odd.

“I crossed over to the other side of the road,” Chanelle said.

“Then I saw the person signing my name through the window, and said to my friend: ‘He knows my name’.”

Then, she recognised Chris, and they arranged to meet up.

“The rest is history, and here we are,” she said.

The couple have three sons, Noah, 14, Lance, 13, and Josh, 9, all of whom are hearing, but have sign as their first language, Chris said.

“Their first words were in sign. Then they started to have spoken language from family members as they grew up and went to school.”

Chanelle’s advice for people who want to learn NZSL or to communicate with deaf individuals was to keep it simple.

“Start by learning basic signs and the alphabet. Practice using the language with others, perhaps by attending a class or joining a group.”

- Taranaki Daily News