Day 283 - The D List - Community report: Christchurch fights back in protest to funding cuts

By: Emily Coull

The D List: Friday, 20 December, 2024

Emily is a self-advocate from Christchurch who lives with Asperger’s and dyspraxia. She enjoys writing fantasy stories to escape reality, and is obsessed with ladybirds. This is her first article on The D*List.

My name is Emily Coull. I am 28 years old and I have dyspraxia and Asperger’s. Two of my favourite things I love to do are writing stories and doing art.

I attended the “Our Voices Count!” Disability Rally in Christchurch on December 7th at the Bridge Of Remembrance. It was organised by Disability Leadership Canterbury. We marched from the Bridge Of Remembrance along Cashel Street with our fighting chants “Nothing about us without us!” and “Stand up, fight back!” We then stopped at High Street for the speeches. The speakers Prudence Walker and Shane McInroe had strong messages for us to keep fighting back against these unfair and unnecessary cuts to funding for the most vulnerable people in our society. After the speeches, we marched back to the Bridge Of Remembrance while also chanting. There were some speeches of gratitude and then we all went on our ways.

I decided to attend the rally because I worry that the funding cuts could affect my activities I do - like Inclusive Performance Academy, gymnastics and Skillwise - and they could stop for good. I thought of my friends who have been affected by it or could get affected by it. I think this idea that the Government is doing is not OK and it shouldn’t be happening. There are other things they could focus on other than funding cuts to the disability community.

It was sad to hear about StarJam closing as so many people loved doing StarJam and everyone could show their amazing talents when they were at StarJam. I did StarJam a couple of years ago and it was so much fun as I got to sing and dance. My good friend Tasha went to the rally and she was very sad about StarJam closing as it made her cry talking about it. She had been doing StarJam for a very long time and she was so happy going to StarJam and she loved doing her singing at StarJam and met so many friends there.

At the rally, everyone was able to express how they were feeling towards the funding cuts. I loved all the support from all the people who came. The White Room made signs that had different sayings on them for the rally which was a fantastic idea.

Despite it being a scorching hot day it was a good turn out on a busy Christmas Saturday. It was an amazing event and there was a great feeling of support and fellowship. It was good to see friends and Skillwise staff and lots of other supporters for this cause. I am looking forward to a good outcome as a result of the outcry for these crazy funding cuts.

Last Updated 30/12/2024

RESOURCES

• https://thedlist.co.nz/newsfeed/community-report-christchurch-fights-back-in-protest-to-funding-cuts/

Day 273 - E Tu - Carers’ pay equity highlighted on Human Rights Day

Carers’ pay equity highlighted on Human Rights Day

Press Statement

E tū Union: Tuesday, 10 December 2024

On International Human Rights Day, E tū is calling on the Government to help fix gender-based pay discrimination by delivering pay equity for care and support workers.

E tū is the union for care and support workers, including those working in residential aged care, home support, disability support, and mental health and addictions. Over 65,000 care workers in Aotearoa New Zealand have been in a prolonged process for a pay equity settlement.

E tū Community Support Services Industry Council Convenor, Marianne Bishop, says it’s important to acknowledge the disparity on International Human Rights Day.

“The underpayment of people working in the care sector is a global issue, which reflects the undervaluation of work traditionally done by women,” Marianne says.

“In Aotearoa, we made some progress with Kristine Barlett’s historic equal pay settlement in 2017, but the pay has slipped back to near the minimum wage.

“A decent and enduring pay equity settlement is well overdue. Carers do this job because we want to make a real difference, and help people live their lives with dignity. Poor rates of pay are taking advantage of our commitment to helping people.

“By valuing care and support workers, we also show that we value the vulnerable elderly and disabled people who they care for.”

E tū National Secretary, Rachel Mackintosh, says fixing pay equity is an important human rights issue.

“Human Rights Day commemorates the anniversary of one of the world’s most groundbreaking global pledges: the Universal Declaration of Human Rights (UDHR),” Rachel says.

“This landmark document enshrines the rights that everyone is entitled to as a human being – regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status.

“To honour our commitment to human rights, we must end gender-based pay discrimination. Aotearoa has had some significant pay equity victories, but care and support workers are still waiting – and they’re fed up.

“It comes down to a political choice. The Government has prioritised tax cuts for landlords and tobacco companies, but won’t front up to pay women fairly.

“They must choose a different path, to prioritise working people and our communities. A decent and enduring pay equity settlement would be an excellent start.”

E tū is part of the Pay Equity Coalition Aotearoa (PECA), an alliance of civil society organisations working together to bridge the gender pay gap.

Last Updated 10/10/2024

RESOURCES

• E tū
• Pay Equity Coalition Aotearoa (PECA)
• Human Rights Day
• Universal Declaration of Human Rights (UDHR)

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 255 - Christchurch - Our Voices Count Rally

Our Voices Count Rally

Organised by: Disability Leadership Canterbury

Facebook: 5p m, 22 November 2024

Join disabled Cantabrians, whānau, and allies for the last rally and hikoi (march) of the year.

The rally starts at 11am at the Bridge of Remembrance, with speeches, and a potential hikoi up Cashel Mall and back.

Bring banners and your voice as we continue to rally against the funding restrictions and changes to Whaikaha.

Date: Saturday, 7 December 2024

Time: 11am

Location: Starting at the Bridge of Remembrance, Christchurch.

Last Updated 22/11/2024

RESOURCES

• Disability Leadership Canterbury

Day 254 - DUNZ website to be replaced

The DUNZ website is to be replaced

By: Mike Peters

Disabled United NZ: Thursday, 21 November 2024

Work is now underway to create the new DUNZ website. The current website uses Google Blogger, has 300 pages, and is becoming difficult to maintain because of the different sections and maintaining internal links. As a result, important information is becoming harder to find because of the poor navigation structure.

This is why the website has not been updated for a while. (There is a large backlog of material waiting to be added.)

The new website will enable content in English, Maori, NZ Sign and AAC (Picture Board) as it becomes available.

There will be separate subdomains for each language, as Wikipedia does.

Zoom meetings will be held on the website. We also want NZ Relay to be included.

The new website uses Pipi9 as its back engine, an AI-assisted content management system that can generate large numbers of static web pages from a database. (Pipi4 created several 25,000-page websites) Based on this, the content on the home page will be fully automatic, changing daily based on simple form fields when a new item is added. It can automatically update the navigation structure. It can also create and send newsletters by email and text.

The existing website will be moved to the new website, keeping existing web links for the search engines.

DUNZ members will eventually receive passwords to log in to a members area, add content, subscribe, add events, etc.

The strategic reason for doing this is that we face a long, hard fight to regain our rights and need the right tools for the job. The website needs to scale and respond rapidly as an organising tool.

Volunteers will do extensive testing to ensure the website meets current Web Content Accessibility Guidelines. The excellent UK Government's Design System on Accessibility Standards will also help.

All suggestions, questions, criticisms and offers of help are welcome.

Last Updated 22/11/2024

RESOURCES

• New DUNZ website mockups
• Pipi9
• Content Management System
• DUNZ
• NZ Relay
• Google Blogger
• Web Content Accessibility Guidelines (WCAG)
• UK Government's Design System on Accessibility Standards

Day 205 - What Disabled United stands for

What Disabled United stands for

By: DUNZ

Disabled United (NZ): 11am, 10 October, 2024

Disabled United (DUNZ) campaigns to unite disabled people in New Zealand to defend our right to control our lives and the support we need through Enabling Good Lives (EGL).

DUNZ organises public meetings, peaceful protests and other activities that unite the maximum number of disabled people, their families, and support workers based on solidarity. The campaign is expected to be long, hard, and determined until our rights are guaranteed by law under the UN Convention on the Rights of Persons with Disabilities.

DUNZ has local branches around NZ. It is membership-based and driven, and everyone is welcome regardless of disability, politics, religion, etc.

Last Updated 10/10/2024

RESOURCES

• 
  

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 182 - ODT - Invercargill 'struggling' without sign language interpreter

Invercargill 'struggling' without sign language interpreter

ODT: Tuesday, 17 September 2024

Deaf community advocates Phillipa and Roger Strong presented to Invercargill City Council as part of its equity and access policy for Tākata Whaikaha (disabled people). PHOTO: ODT

Invercargill’s deaf community has signalled a desperate need for a sign language interpreter, two years since the last person left the role.

The hole has been felt by the Southland city’s deaf community during that time, with one person saying they were seriously ill in hospital with no interpreter available.

Advocates for the deaf and disabled expressed their frustration with Invercargill City Council as part of a consultation for its disability policy.

Southland Deaf Community secretary Phillippa Strong told a hearing panel today that a full-time interpreter would open the door for people to attend events, appointments, shows and concerts.

“Deaf people should be treated equally. Deaf people have rights,” she said.

The Southland Deaf Community was made up of about 13 to 15 members, but Strong said she knew of about 80 children in Invercargill who were deaf.

Her husband, Roger Strong, is the chair of Southland Deaf Community and communicates through sign language.

He told those gathered it was “very frustrating” trying to get by without interpreters.

“It’s hard, very hard, even to communicate with my own wife."

Jamie Randhawa said she recently experienced a situation at an emergency department where an interpreter was not available. PHOTO: ODT

Also presenting to the panel was Jamie Randhawa, who proudly identified as both deaf and disabled.

Randhawa works as a sign language educator at the Southern Institute of Technology, and said a recent experience at an emergency department left her upset after it was revealed no interpreter would be available.

“It was very disappointing and disheartening and I was very ill at the time. It was not good enough.”

Tracy Peters represented a number of disability groups at the hearing.

She encouraged the council to appoint a staff member to the role of advocate for people with disabilities.

Peters detailed a recent incident of discrimination she experienced in the city in which a shop owner locked the door so she wouldn't be able to enter in a wheelchair.

It wasn’t until a customer in the shop found Peters in the street several minutes later, and explained what had happened, that she realised she had been marginalised.

“When you’re dealing with disability, it’s tough.”

Deaf Aotearoa chief executive Lachlan Keating said it had been about two years since Invercargill had been home to a permanent interpreter, but the gaps were sometimes plugged by video calls or people flying in.

A lack of an interpreter made appointments with doctors, social service providers and government agencies difficult, he said.

There were about 120 interpreters nationwide, and about 95% were female.

In order to gain the qualification, people needed to study for a three-year degree.

Upcoming recommendations to council would include a request for the mayor to set up a disability portfolio, and the development of an action plan for disability inclusion.

LDR is local body journalism co-funded by RNZ and NZ On Air

Last Updated 18/09/2024

Resources

• Southland Deaf Community

• https://www.odt.co.nz/southland/invercargill-struggling-without-sign-language-interpreter

Day 180 - Carers NZ - Survey about how funding changes are affecting you and your family

Survey about how funding changes are affecting you and your family

DPA's Information Exchange: Sunday, 15 September 2024

Carers NZ would like to hear from people and family carers about whether funding changes have affected your health/disability supports.

If you or someone you assist has recently had a new needs assessment or review, please complete our short survey:

• have your supports increased, decreased, or stayed the same?
• if supports have decreased, what was the reason?
• are they meeting your needs?

Having this picture is important right now. Thanks for giving input – we’ll be sharing what we learn by the end of the month.

Answer the NZ Carers survey about the affects of funding changes.

Last Updated 15/09/2024

RESOURCES

• Carers NZ

• https://www.surveymonkey.com/r/GYYCHVZ

Day 179 - Substack - Enabling Good Lives vs Abuse in State Care

Enabling Good Lives vs Abuse in State Care

By: Dr Bex

Dr Bex's Substack: Saturday, 14 September 2024

Enabling Good Lives vs Abuse in State Care

Enabling Good Lives (EGL) are a set of principles. The Waikato EGL demonstration site was set up to embody these ideas and principles in real-life everyday terms.

We want our (disabled) daughter to live independently; to live a neglect-free, abuse-free life, just like we do for our non-disabled kids. We are painfully aware of her vulnerabilities. The Abuse in State Care report paints a grim picture indeed of her vulnerabilities. It terrifies the living daylights out of me, reading parts of that report.

Our daughter is a joy and a delight. She greets every new morning with joyful abandon, cheerfully announcing she “had a good sleep, did you have a good sleep?” My friend, it is barely half six. I have not had a ‘good sleep’! When I collect her from school, every day it is '“I had a good day today” and “Can we go to the shop?” my responses are immaterial. They are always followed by asking where everyone in the family is. This is her routine of joy and care.

Reading the Abuse in State Care reports, it so clearly and horrifically lays out what the future holds for our daughter, if we are not diligent and alert.

Enabling Good Lives isn’t just a set of principles for us - it is a roadmap for us to build an abuse-free, neglect-free life for our vulnerable child.

For us, over the years we’ve been part of the Waikato EGL demonstration site, it’s seen our thinking shift from “what can we buy with our funding” to “what do we need to do now to work towards our daughter having an ordinary life”.

We are painfully aware that we will age and die before our child, and that we cannot always be the backstop and care provider. This is the grim reality that parents of disabled children must address.

Working towards an ordinary life for our child means creating positive whānau experiences now. It means creating lasting memories of love and care, where she is seen and treated as a valued member of her whānau.

Working towards a positive future for our daughter looks like spending time as a whānau at the beach (her absolute love) each year. It looks like going to 10-pin bowling as family. It looks like attending tangi at marae with her Nan. It looks like swimming lessons and rock climbing with her peers. It looks like creating positive experiences and memories that will sustain us all during the hard times.

water seems to hold extraordinary appeal - even during winter!

For the unaware, the cruel, and the callous, such activities are too-easily dismissed as unnecessary luxuries.

We know, that if we are to future-proof an ordinary life, we need to build positive relationships with her siblings and her whānau now, in the everyday. We know that building a neglect-free, abuse-free life requires intentional action and whānau connection now, in the everyday, so she isn’t left isolated and alone. We know that it is memories of the good times together that is the glue that holds us when things are tough.

We also know that this requires flexible funding that understands our long-term goals.

We also know that she needs depth and breadth of community beyond whānau. She needs connections with peers and like-minded others. This means connecting with organisations like Halberg and attending their annual games, so she meets other kids like her. It means enrolling her with Kāpō Māori Aotearoa and attending their bi-ennial Hui Taumata so she has a community beyond her immediate family.

Achieving this requires flexible funding based on Enabling Good Lives principles and which understands our long-term goals.

The direction the current government is taking worries me deeply. The attitude towards disabled people and families, the language and lies, the myopic focus on finance alone, all of this is taking us back to a climate that enables abuse and neglect.

We must not allow the cruel and the callous to set the agenda and determine what is and is not suitable for disabled people and their families. If there is $12.4 billion in cumulative revenue for the tobacco industry, there surely is more than enough to support disabled people and their families to live ordinary lives.

Last Updated 14/09/2024

Resources

• https://drbex.substack.com/p/enabling-good-lives-vs-abuse-in-state

Day 179 - Facebook - Successful Taupo Protest

Successful Taupo Protest

Information supplied by: Jennifer Rose Parker

Facebook: Saturday, 14 September 2024

10 people attended the protest on Friday, 13 September 2024, at the Taupō Rose Gardens for a hui and solidarity protest outside Louise Upston's "Friendly Forum."

Last Updated 19/09/2024

Resources

• https://www.dunz.org.nz/2024/09/day-169-facebook-taupo-protest-called.html

Day 178 - NZDSN - Disability support providers deserve support, not spin

Disability support providers deserve support, not spin

Opinion: Peter Reynolds, New Zealand Disability Support Network CEO

NZDSN: September 13, 2024

It’s been disappointing and insulting to see the rhetoric about our support provider colleagues working with Oranga Tamariki from the Minister for Children, accusing support providers of concentrating on building their own bank balances.  Disability support providers, who often work with OT clients, must wonder if they’ll be next for this kind of accusation. 

The reality is disability support funding increases have consistently been lower than inflation for the last four years – what business can survive that? 

The sector is coping with 3,500 new disabled people seeking support each year, often with increasingly complex needs. That’s alongside the increasing costs of delivering that support, thanks to inflation and added complexity of the care required. The sector is simply being throttled. 

The support sector is full of skilled and passionate all too familiar with doing their jobs on very little resource. The reality is, this is a sector where funding is always tight, and our members are always looking for how we can do things more efficiently.  

So, rather than throw stones at providers, why not work with them? There is an open invitation to Ministers and MP’s to visit disability support providers, and meet the people delivering these crucial services, hear their korero and ask any questions to get clear on what’s happening on the ground. 

They’ll tell you their challenges and how they try to overcome them, what effect a funding cut is having on their roles and the people they support, and where the remaining risks are. These are the very frontline workers the coalition government claims to support, but right now they’re wondering what the review panel recommendations, and the gutting of Whaikaha means for them. 

Any politicians willing to visit providers will find they’re 100% focused on supporting disabled New Zealanders, as it should be. No-one is in this sector to make money – if they were, they’d soon be found out.  

We deserve better from elected Ministers targeting providers performing really challenging roles in our sector – I think they deserve support, not spin.

Last Updated 14/09/2024

RESOURCES

• https://nzdsn.org.nz/disability-support-providers-deserve-support-not-spin/

• https://nzdsn.org.nz/providers-search/

• New Zealand Disability Support Network

Day 177 - Southland Times - ‘We will fight for our rights back,’ disability advocate says

‘We will fight for our rights back,’ disability advocate says

By: Louisa Steyl

The Southland Times: 12:22 pm, 12 September 2024

Disabled United Invercargill chair Mike Peters says any changes to disability funding need to be an open discussion with the impacted community. (File photo)

Kavinda Herath / Southland Times

In an ongoing effort to fight funding cuts, Disabled United Invercargill and The Southland Deaf Community are hosting a forum on Saturday.

The groups have invited the Labour Party’s MP for Invercargill Ingrid Leary, who supports Invercargill issues since the former Invercargill MP Liz Craig left parliament, and Labour spokesperson for disability issues Priyanca Radhakrishnan to hear more about how they can help the cause.

People with disabilities have been mobilising all over New Zealand after a series of cuts to Whaikaha - the Ministry of Disabled People and the services it can fund.

“We will fight for our rights back,” Disabled United Invercargill chair Mike Peters said, adding, “We’ll work with anyone who wants to work with us.”

In March, the ministry announced, in a Facebook post, that it would be limiting how people with disabilities were able to spend their funding.

Invercargill’s National MP and former minister of disabilities Penny Simmonds defended the decision at the time, saying funding was set to run out in “days”.

Simmonds referred to the move as a funding pause, but was then stripped of the portfolio and the ministry was reviewed, before new Disability Issues Minister Louise Upston announced a restructure in August.

The disability forum at Invercargill Library from 2pm on Saturday would be a chance to hear from the Labour Party and build public support, Peters said, adding that everyone was welcome.

Leary pointed out that while people with disabilities were “leading the fight”, allies from the wider community were important.

“There’s strength in numbers. It’s by working together that we make the biggest difference.”

Members of Southland's disability community picketed outside former Disabilities Minister Penny Simmonds's office in Invercargill in June. (File photo)

Kavinda Herath / Southland Times

Leary had been impressed by how motivated and organised Disabled United New Zealand were, she said.

“[They] are a small, but dynamic group who are doing advocacy work, not just for Southland, but for all of New Zealand.”

But recognising how numbers of people with disabilities in Southland and Otago, Leary said it was important to make sure the region wasn’t forgotten about.

She hoped that building a relationship with Radhakrishnan would allow DUNZ to shape future policy.

But the meeting would also serve “to show that we value the important work they’re doing and that we can carry their work back to Wellington to show the horrendous impact these cuts are having on people and their families,” Leary said.

The meeting will be held upstairs at the library and doors will open at 1.30pm.

- The Southland Times

Last Updated 12/09/2024

RESOURCES

• https://www.stuff.co.nz/nz-news/350412648/we-will-fight-our-rights-back-disability-advocate-says

• Disabled United Invercargill

• Southland Deaf Community

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

• https://www.stuff.co.nz/politics/350379391/watch-disabled-community-heartbroken-slamming-disability-services-restructure

• https://www.stuff.co.nz/nz-news/350229398/disability-community-protest-funding-halt-outside-ministers-office

• https://www.stuff.co.nz/politics/350223159/disability-advocates-protest-funding-changes

• https://www.thepost.co.nz/nz-news/350383326/we-have-stop-being-people-things-are-done

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 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 171 - RNZ - 'We're not going to back down': 300 protest changes to disability services in New Plymouth

'We're not going to back down': 300 protest changes to disability services in New Plymouth

By: Robin Martin

RNZ: 6:30 pm, Friday, 6 September 2024

Photo: RNZ / Robin Martin

About 300 people, chanting "nothing about us, without us" and "disability rights are human rights", have marched through central New Plymouth protesting changes to disability services.

The government is restructuring Whaikaha, the Ministry of Disabled People.

It is losing responsibility for delivering support services, which will move to the Ministry of Social Development.

Hundreds of protesters, many in fancy dress, some using wheelchairs or walking with the aid of caregivers or family members, made their way up Devon Street before picketing the National Party offices on Gill Street.

Co-organiser Francine Jones, of Taranaki Disability Action, said they were fed up but determined.

"We're here to show we're not going to back down. We need this freedom to be able to live our best lives and we can't sit back and let this happen. They're actually taking back all the power from Whaikaha which is awful because that is something we all advocated for big time."

Her son, Nash, was living with Lesch-Nyhan syndrome, and she was worried about her access to respite care.

"They've taken away our freedom in the way like a big thing for me is to be able to sleep a full night's sleep and quite often that means booking into a hotel for a night. They've taken away our choice to be able to do that."

Protest co-organiser Francine Jones of Taranaki Disabilty Action with son Nash, who lives with Lesch-Nyhan Syndrome and dad.Protest co-organiser Francine Jones of Taranaki Disabilty Action with son Nash, who lives with Lesch-Nyhan Syndrome and dad Photo: RNZ / Robin Martin

Jones also feared residential care would no longer be available for Nash when she was unable to care for him full-time.

Elizabeth Millen, 11, lives with cerebral palsy.

She was worried about what funding cuts would mean for her favourite hobby.

"The funding it lets me go to Riding for the Disabled which means my core strength has been really developed and I learned how to look after animals."

Her mum Stacey said their choices were being eroded.

"Elizabeth and everybody else needs to be able to determine how their funding is spent, so we can do things that are best suited for her. So, if we need to get socks or splits or things that the government don't provide we can actually get them."

Elizabeth Millen, 11, and mum Stacey are worried about funding cuts.Elizabeth Millen, 11, and mum Stacey are worried about funding cuts. Photo: RNZ / Robin Martin

Lucy-Anne Thomas is also living with cerebral palsy.

She was anxious about the affect of funding cuts on her schoolwork.

"Specifically because I'm a girl who worries far too much about here grades ... I'm surprised it hasn't killed me yet ... without a learning assistant somethings I can't do very well, I feel bad about it. I worry without a learning assistant I won't be able to do what I need for my learning."

The 11-year-old had a message for the government.

"Please stop this it affects our lives so much that it is bad. It's really bad. It's so bad we can't demonstrate it with a metaphor."

Lucy-Anne Thomas and family wore her favourite colour for the protest.Lucy-Anne Thomas and family wore her favourite colour for the protest. Photo: RNZ / Robin Martin

Her mum Vicky did not think the disabled community was getting a fair go.

"I'm here because it feels like the government isn't listening to the disabled community and not taking into consideration our opinion and what matters to us before making rash cuts. All we want is to be listened to and consulted."

Asked for comment, Whaikaha referred RNZ to Disability Issues Minister Louise Upston's August media statement.

In it Upston said the shift of support service delivery was "significant but necessary".

"We must now take urgent action after an independent review found the delivery of these services is in a dire state, with unsustainable spending and a lack of fairness and transparency around what support disabled people can access.

The minister said much of the problem stemmed from the "rushed" six-month establishment of the Ministry of Disabled People - Whaikaha.

The government was committed to supporting disabled people, and had provided a record $1.1 billion dollar funding boost to disability support services in the Budget, she said.

Last Updated 08/09/2024

Resources

• https://www.rnz.co.nz/news/national/527275/we-re-not-going-to-back-down-300-protest-changes-to-disability-services-in-new-plymouth

Day 171 - RNZ Checkpoint - Hundreds protest changes to disability services in New Plymouth

Hundreds protest changes to disability services in New Plymouth

By: Lisa Owen

RNZ Checkpoint: 5:26 pm Friday, 6 September 2024

About 300 people, chanting "nothing about us, without us", have marched through central New Plymouth protesting changes to disability services.The government is restructuring Whaikaha, the Ministry of Disabled People. It's losing responsibility for delivering support services, which will move to the Ministry of Social Development, Taranaki Whanganui reporter Robin Martin was at the protest.

Last Updated 08/09/2024

Resources

• https://www.rnz.co.nz/national/programmes/checkpoint/audio/2018954489/hundreds-protest-changes-to-disability-services-in-new-plymouth

Day 171 - 300 march in New Plymouth

By: Victoria Coleman

Facebook: 2:36pm, Friday, 6 September 2024

We had such an amazing turnout for our New Plymouth protest today. It was deeply touching to see everyone's support and hear their stories. We will need to keep it up, but it is a start. 

Last Updated 08/09/2024

Resources

• https://www.facebook.com/BryanVickeryMedia/videos/2272682726419233/