Day 56 - DPA Media Release: 52 organisations back call for ministers to reverse disability funding cuts

DPA: May 14, 2024

Disabled Persons Assembly NZ (DPA) has released an open letter that calls on ministers Upston and Willis to fully reverse the 18 March disability support restrictions and ensure disabled people have the resources and the flexibility needed to thrive.

The letter is signed by 52 organisations representing disabled people, families, whānau and carers, as well as disability support providers, faith-based organisations, and welfare advocacy groups.

DPA Chief Executive Mojo Mathers says the breadth of support for this call from right across the disability sector should give Ministers Upston and Willis the confidence they need to take decisive action in advance of the Whaikaha independent review findings.

“For too long, much of the support for disabled people has been piecemeal, inequitable, and has not served our community well.

“Now is the time for Government to reverse support and service restrictions that are holding disabled people and our community back.

“With this letter, we ask Government to demonstrate it values disabled people and their families, whānau and carers as key members of our communities in Aotearoa.” 

-Ends-

For more information contact:

Mojo Mathers, Chief Executive, Disabled Persons Assembly NZ (DPA)

chiefexecutive@dpa.org.nz | phone: 027 238 5811

Quotes from signatories

PSA Deaf and Disability Committee

“What we choose to fund is about what we choose to value. Successive governments have severely underfunded services, equipment, and programs that remove barriers for disabled people to participate fully in our communities and direct our lives.

Timothy Keats – timothy.keats@psa.org.nz

Complex Care Group

“Complex Care Group supports families caring for those with intensive health and disability support needs. Government is failing to recognise the intensely demanding caring role performed by families.  There needs to be an increase in investment for the wellbeing of carers and a return of flexibility and choices for respite.”

Lisa Martin, Director

complexcaregroup@xtra.co.nz | phone: 027 266 7690

New Zealand Disability Support Network

“Unfortunately, we’re experiencing the impact of years of under-investment in disability support. Hundreds of thousands of disabled New Zealanders and their families are feeling uncertain about their future right now - they deserve to be valued and treated fairly, the government needs to step in and sort this mess out.”

Peter Reynolds, CEO

ceo@nzdsn.org.nz | phone: 04 473 4678 | mobile: 027 534 6472

About Disabled Persons Assembly NZ

DPA works to drive systemic change through leadership, advice and advocacy.

We are a not-for-profit, pan-impairment Disabled People’s Organisation (DPO) run by and for disabled people. Currently, more than 90% of our staff identify as disabled.

We have regional, national and international relationships with disabled people and disability organisations, and we are one of the six DPO's that make up the DPO Coalition. Since our formation in 1983, DPA has advocated for systemic change for the equity of disabled people in all areas of life.

Last Updated 14/05/2024

RESOURCES

• Read the Open letter – Enable disabled people, family and whānau to thrive (PDF)

• Read a text only version of the Open letter – Enable disabled people, family and whānau to thrive

Day 56 - DPA - Open letter: Enable disabled people, family and whānau to thrive

Open letter: Enable disabled people, family and whānau to thrive

DPA: 14 May 2024

14 May 2024

To:

The Honourable Louise Upston, Minister for Disability Issues and of Social Development

The Honourable Nicola Willis, Minister of Finance

Tēnā kōrua Minister Upston rāua ko Minister Willis,

We write as organisations representing disabled people, their families and whānau, disability support services, and the wider disability community.

We know that disabled people and those who love, support and care for us could be thriving right now. We could contribute to our communities in ways that work for us without fear of losing the income we need to support us.

But persistent underinvestment from successive Governments for disabled people and our wellbeing means many of us are spending precious energy just trying to keep our heads above water.

When others decide who is worthy of support and on what conditions, they often fail to recognise the extent to which health conditions, disabilities, cost of living pressures and employment-related barriers impact on our community.

When Government fails to resource our disability ministry enough to flexibly support our disabled community and whānau, we are funnelled towards poverty, stress, and isolation.

It doesn’t have to be this way.

We urge Government to:

• Fully reverse the restrictions within the Disability Support Services Purchasing Guidance and to Equipment and Modification Services made on 18 March 2024.

• Recognise disability support and services as frontline work and fund accordingly.

• Ensure an equitable, culturally responsive approach to resourcing support and services to disabled people across the whole of Government.

• Recognise that people with disabilities and health conditions are the experts on the barriers we face by increasing income and employment support and removing sanctions that cause harm to disabled people.

• Support meaningful involvement of disabled people, whānau and the wider disability sector in all Disability Support System reviews and high-level decisions.

There is a pressing need for Government to demonstrate that it values disabled people as key members of our community by ensuring that disabled people and their families and whānau have the resources they need to thrive.

With hope,

• Disabled Persons Assembly NZ Inc.

• Access Community Health

• ActionStation Aotearoa

• Adult Guardianship Services Trust

• Aotearoa New Zealand Adult Safeguarding Alliance

• Ara Hina Consultancy

• Association of Blind Citizens of New Zealand (Blind Citizens NZ)

• Auckland Action Against Poverty

• Auckland Women’s Centre

• Beneficiaries and Unwaged Workers Trust

• Carers NZ

• CCS Disability Action

• Child Poverty Action Group

• Complex Care Group

• Continence NZ

• Deaf Aotearoa

• Deafblind Association of New Zealand Charitable Trust

• Disability Connect

• Disability Leadership Canterbury

• Disabled People Against Cuts Aotearoa

• Donald Beasley Institute

• Enabling Good Lives Taranaki

• Fairer Future Coalition

• Foundation for Equity and Research New Zealand

• Fragile X New Zealand

• Good Lives Wairarapa

• iFUNZ

• Inclusive Education Action Group Incorporated

• Kanohi ki te Kanohi

• Methodist Alliance

• Migrants Against the Acceptable Standards of Health Aotearoa

• My Life My Voice

• National Disabled Students’ Association

• New Zealand Council of Christian Social Services

• New Zealand Disability Support Network

• NZ Carers Alliance

• NZ Disability Advisory Trust Inc

• NZ Foundation for Conductive Education

• Older Disabled Persons Group

• Parents of Vision Impaired NZ

• People First NZ

• Poverty Free Aotearoa

• Project Gender

• PSA Deaf and Disabled Network Committee

• Public Housing Futures

• Public Service Association

• Rare Disorders New Zealand

• Save the Children New Zealand

• System Change Aotearoa

• Te Ao Mārama Aotearoa

• United Community Action Network (UCAN)

• VIPS – Equity in Education

• VISABLE

• Young Carers NZ

Day 56 - EGL - Hamilton Public Meeting May 23

Hamilton Public Meeting. Thursday, 23 May 2024

On Thursday May 23rd from 3-5pm at Western Community Centre (46 Hyde Avenue, Nawton) the Enabling Good Lives Waikato Leadership Group are holding a public meeting for the local disabled community and their families. It is an opportunity to share how you have been impacted by the changes to the purchasing rules recently announced by Whaikaha.

NOTE: To add the event to your calendar, you can also scan the QR code on the flyer,

Last Updated 15/05/2024

RESOURCES

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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 55 - DUNZ - Invercargill video documentary to be made

Invercargill video documentary to be made

By: Mike Peters

DUNZ: Tuesday, 14 May 2024

DUNZ-Invercargill is making a 15-minute video documentary to explain the impacts of the funding cuts through the voices of 5 disabled people. Filming will start next week and be finished by the first week of June. The video will then be edited to a high standard and subtitled. It will be played at an upcoming public meeting in Invercargill and then shared on YouTube.

It will have five short interviews with disabled people and/or their families.

Each 3-minute interview will ask;

• Who are you?

• How were you affected by the effect funding cuts?

• What do you want changed?

We need five volunteers from around Invercargill who are prepared to talk about their lives.

If you are interested, please get in touch with Mike Peters.
Mobile: 022 600 5006
Email: office@dunz.org.nz

Last Updated 14/05/2024

RESOURCES

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Day 54 - DUNZ - Left in the Dark

Left in the Dark

By: Carolyn Weston QSM

DUNZ Invercargill: 13 May 2024

I was born with a rare condition, causing me to have brittle bones and be legally blind. Since I was a child, I have experienced a number of fractures. In 2021, when I had a major fall, I broke both my ankles and two bones in my right arm and also had several minor fractures. Nowadays, I walk inside my home with the aid of a walking frame.

To obtain my disability support services, I receive Government (Individual Funding). This money is sent to my Host Agency, who pay my support workers, who I employ to assist me with various tasks and activities. Due to unforeseen circumstances, such as staff leaving and finding a replacement, I don’t always use my annual budget. Last year, with some of the residue of my funds, I purchased a new magnifying lens for my reading glasses as the old lens was overdue to be replaced. I also upgraded my computer screen reader. Adaptive technology to enable blind people to use computers, etc., can be very expensive. I felt satisfied and rewarded that I could independently purchase this disability-related equipment. 

On 18 th March 2024, the Government announced changes to the rules around funding disability support. These changes were made without any consultation with the disability community and no thought was given to how these changes would affect us. 

As I recently had to replace a support worker, I know there will be some residue in my disability support funding, and I was going to purchase a new walking frame because the one I have is unrepairable and worn. I need a tray on my new walking frame because when I carry things such as cooking or baking containers on my current walking frame seat, the containers slide off and hit my legs or feet. The walking frame I require would have cost me $330.00. But now, due to the Government’s thoughtless rule change to my funding, I can no longer purchase my own walking frame.

Four weeks ago, the woman who works in the local Disability Equipment Shop sent a form to the Southland Hospital therapy department requesting that they replace the walking frame I have. You may think this solves my problem, but it doesn’t really. I have no input into the type of walking frame I need, no option in what colour I may like and more importantly, no idea when this walking frame will arrive at my house. It will just arrive.

I am angry, insulted and in despair that I am not being treated as a responsible adult who can make informed decisions for myself. New Zealand’s Government has signed the United Nations Convention on the Rights of Persons with a Disability, meaning I have the same human rights as all other New Zealanders. I should be allowed to make my own informed choices over what I purchase and where I purchase disability equipment from. Talk about monopoly! 

Since 1991, I have served and continue to serve on several governing boards. For 7 ½ years, I worked in health and disability ethics, and now I am treated without respect. I want to be able to purchase my own disability equipment (with the checks and balances there were) without people telling me what I can or cannot purchase.

Nothing about us without us.

Last Updated 13/05/2024

RESOURCES

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Day 52 - Southland Times - Deaf community calls for sign language interpreter

Deaf community calls for sign language interpreter

By: Louise Steyl

The Southland Times: Saturday 11 May 2024

Southland Deaf Community chairperson Roger Strong and secretary Philippa Strong say there are plenty of instances where people with hearing disabilities require a sign language interpreter.

KAVINDA HERATH / SOUTHLAND TIMES

Imagine being admitted to hospital and you can't hear or understand what the doctors and nurses are saying to you.

That's been the reality for Southland's deaf community who have been without a dedicated sign language interpreter for the past three years.

The Southland Deaf Community organisation is calling for a new interpreter for the region as relying on translators to travel from Dunedin is impractical.

But Deaf Aotearoa say there aren't enough people in the area who require the service to warrant employing someone full time.

To communicate during this interview, Southland Deaf Community president Roger Strong used a transcribing app on a phone belonging to his wife, secretary Phillipa Strong, but it meant looking at the screen and not being able to fully engage in the conversation.

But an interview is just one example of when he would need an interpreter.

There's doctor's appointments, and Winz visits; while some members have pointed out how good it would be to participate in community events or theatre shows. “We really need interpreters in Invercargill,” Philippa said.

Using the example of a doctor’s appointment, she pointed out that sometimes she could get a same day appointment for Roger, but often they had to wait until an interpreter could travel from Dunedin.

“It’s a real nightmare,” she said.

When someone wasn’t available, they would be asked to use the government-funded relay service that converts speech to text and visa versa, using a computer or smart phone.

“But a lot of our members are older and they aren’t up to date with technology. They would rather have face-to-face contact,” Phillipa said.

She conceded that the organisation wasn’t large, but believed more people would use the service if they knew it was available.

Deaf Aotearoa chief executive Lachlan Keating said a lack of interpreters was an issue many smaller towns and regions in New Zealand was facing.

“It’s not a situation we are happy with. We can understand the community finds it frustrating,” he said.

Deaf Aotearoa had been discussing the challenge with its funders but its contracts were limited and it was difficult to keep someone in full time work in small communities, Keating said.

In some regions, communities had been able to co-ordinate with agencies to have interpreters fly in an do a three-day block of appointments with ACC, for example, he said, “but deaf people can’t be expected to set their lives around the availability of interpreters”.

Keating called on businesses and services to be proactive themselves and book interpreters as soon as they’d set an appointment with someone from the deaf community.

“The more notice, the more likely we are to match interpreters,” he said.

This was particularly true when people had a preferred interpreter or needed someone who understood particular jargon or fields.

The Strongs have thrown their weight behind Disabled United NZ who have been protesting a pause to disability funding announced in March.

“Money needs to be spent on people with disabilities to make it a safer environment,” Roger said.

“Everyday living will be more difficult with these cuts. It’s hard enough as it is.”

Correction: An earlier version of this story stated the former interpreter had died. This is not the case. (Amended 10.30am, Sunday April 12, 2024)

Last Updated 12/5/2024

RESOURCES

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Day 49 - DPA - DPA gives oral submission on Budget Policy Statement

DPA gives oral submission on Budget Policy Statement

DPA's Information Exchange – 8 May 2024

Today, Mojo Mathers, DPA Chief Executive, spoke to the Finance and Expenditure Committee in support of our submission on the Government Budget Policy Statement, which had 18 recommendations covering topics from disability support funding through to emergency management.

For the oral submission, we made the following points:

• the spending cuts already being implemented across the public sector are having a disproportionate impact on disabled people and our families and whānau

• the provision of services that disabled people rely on across disability support, education, health and welfare are being compromised to the detriment of our health and well‑being

• the impact of the disability funding changes and the impact that the 18 March announcement has had on the disability community, including the constraint of funding for wheelchair and modification services and the serious implications for the health and safety of disabled people and their carers

• another major issue for disabled people is that the cuts in other ministries, for example to education.

In closing, Mojo stated that, "In this budget, government has the opportunity to turn this around, say hey, the impacts and consequences for disabled people is too great. We need support so that we can thrive as families, as disabled people in this country."

"So at an absolute minimum, we are calling for government to fully reverse the effective cuts to disability support funding and to generously resource disability support across all of the major ministries, health, education, welfare, as well as Whaikaha."

The questions that followed covered Government's goals of getting people of benefit, the barriers to participating in education and our recommendation to keep prescription costs free.

Read DPA's written submission on the Government Budget Policy Statement.

Last Updated 10/05/2024

RESOURCES

• Read DPA's written submission on the Government Budget Policy Statement. (MS Word)

• Read DPA's written submission on the Government Budget Policy Statement. (216 KB PDF)

Day 49 - DPAC - Wellington Protest 29 May 2024

Parliamentary Rally - Disabled People Under Attack, Join Us, Fight Back

Wednesday 29 May, 2024. 12:30 pm - 2:00 pm

Parliament lawn, 1 Molesworth St by the Seddon Statue

Organised by Disabled People Against Cuts Aotearoa

With flexible support and liveable incomes, disabled people and those who love and care for us could be thriving right now. But this Government's attack on our rights has starved our support systems of the funding they need in order to ensure our wellbeing and value care work.

So we're calling on our disabled community, whānau, friends, service providers and allies!

With budget day around the corner, join us to urge Minister Upston to immediately reverse all the disability funding cuts, and work towards an equitable, culturally responsive approach to resourcing support and services to disabled people across Government.

Let's resist the Government's agenda of tax cuts for landlords and austerity for the rest of us! 

On the day:

- Bring banners and signs if you can - they make great photos! We will also aim to have some signs for people to hold on the day.

- There will be waiata, chants, group photos and speeches.

- Journalists and MPs are invited.

- We will update this event page with an alternative wet weather option if necessary.

Accessibility:

Let us know how we can make it easier for you to be part of this kaupapa e.g. if you'd like a hand to get there, a buddy to hang out with on the day. Email dpac.nz@gmail.com

There's flat wheelchair access, although the driveway up to Parliament has a somewhat steep gradient. Cars/taxis should be able to drop people off at the top of the driveway.

The rally will be NZSL interpreted

There is no dedicated seating, so consider bringing a chair if standing for a longer period is tricky.

If rallies aren't your thing or inaccessible to you, your voice still matters. Back us up with your favourite hashtags #ReverseTheCuts #ReturnOurRights #NothingAboutUsWithoutUs #LetUsThrive #ToitūTeTiriti

We'll aim to record speeches and share them on the Disabled People Against Cuts Facebook page after the rally.

Day 47 - The D*List - A tribute to Sir Robert Martin: The most famous New Zealander most New Zealanders didn’t know about

A tribute to Sir Robert Martin: The most famous New Zealander most New Zealanders didn’t know about

By: Alexia Black

The D* List: Monday 6 May 2024

Sir Robert spent his life working to improve the lives of disabled people, says his friend Alexia Black, now we must carry that torch for him.

The way Sir Robert came into the world – through a traumatic birth – set his life on a path that seemed pre-destined. Much has been written about Sir Robert Martin's early years in institutions, foster houses (he wouldn’t call them homes) and then his journey to become the international giant of disability rights he is today. I’m not going to rehash those stories. They aren’t mine to tell, and Sir Robert told them over and over and over again (breaking his heart a little more each time), in the hopes it would stop anyone else having to go through what he did.

You can find film footage of him online easily enough – please take the time to do so and learn more about not only his story but the stories of the people who never made the limelight.

Alexia and Robert pictured outside in the snow outside at the UN; they are wearing hooded jackets and smile together at the camera.

Since his passing, I’ve spoken to so many people who are hurting from their loss. One thing is consistent: everyone felt he was their close, personal friend. There is a sense of pride in people who knew him – whether through one meeting or a lifetime of shared memories. To be able to do that – make everyone feel like they were his person – what a gift.

Wherever he went, Sir Robert left a deep and lasting impression on people – whether through his powerful words that could silence a room, his out the gate sense of humour that left you in stitches or his incredible knowledge of sports, music or the animal kingdom. He always wanted to meet Sir David Attenborough, he was so proud that he was a Sir like Sir David. I wish we could’ve made that happen.

We would joke that after he finished his term on the United Nations Committee on the Rights of Persons with Disabilities, Rob should be a founding member of a new international committee, on the Rights of Animals. It was a joke, but actually, he would’ve put the same heart and soul into that role that he did for his UNCRPD one if he’d had the chance.

The most incredible times I saw Rob connect with people, was when he met with disabled people. Out of a room full of statesmen, dignitaries and paparazzi (who all wanted to have a photo with him), he would make a direct beeline for the disabled people speaking at the UN, or who had travelled to the Spanish Parliament, or who were working in one of the airports we were travelling through, or who we saw on the street. He would see people. He would genuinely ask them about themselves; he would listen and he would carry them with him.

I am blessed to have a million little memories of Sir Robert – from the devastating to the hilarious, which I will treasure forever. And I’m glad everyone else does too. It’s in this way that he will be remembered. He truly gave his life for this work and now we have to carry that torch for him. In his name, let’s continue the fight to close institutions – large and small.

[PHOTO]

Let’s keep pushing for people to be able to choose where and with whom they live. Let’s make a world where people with learning disability can get married if they want to, have and be assisted to keep their children with them, not be sterilised without consent, know what it is like to grow up in a loving family and have their own possessions that bring them joy. Go to school, be listened to when they need healthcare or mental health support, have meaningful jobs, listen to music they love, play Yu-Gi-Oh to their heart’s content and all the sport they want (only Rob would be at the UN and just see a perfect cricket pitch!)

These were his passions, and in this way, we can truly honour him.

I don’t generally put people on pedestals – it’s unfair and doesn’t let people mess up. But Rob, you were the best of us. Flaws and all. We won’t forget you, mate. You changed our worlds, and the world. You can rest now. Hope you’re somewhere playing footie and having a nice scotch whiskey. Love you, my friend. 'Till we meet again.

Last Updated 13/05/2024

RESOURCES

• Article in Whanganui Herald

• Robert Martin on YouTube

Day 46 - Dunedin Protest 25 May

Dunedin Disability Funding Cuts Sensory Friendly Protest 

Join us for a sensory friendly protest of the 18 March Whaikaha, Ministry of Disabled People, Funding Cuts.

Date: 25 May

Time: 11 am

Where: the new accessible playground on George Street, Dunedin.

We will not be chanting or having formal speeches. This will be a relaxed protest where we just hold banners, show our presence as disabled people and enjoy the playground. There will be a five minute silence for those who can’t be with us and to symbolise how our voices have been silenced, followed by an opportunity for disabled people and care givers to share their stories. Everyone is Welcome.

We welcome everyone to our protests however we are focused on and united by disability rights. This is not an event to champion other causes.

Dunedin Funding Cuts Protest Group

Contact: Amy Taylor amytaylordisabilityadvocate@gmail.com

Day 44 - Auckland Protest 26 May called

Fund Disability Support - Hands Off Whaikaha!

Organised by: DPAC Aotearoa with DUNZ-Auckland and SCA: 

Where: Komititanga Square, Queen St, Auckland Central, Auckland 1010, Auckland

When: Sunday 26 May 2024, 12 pm - 1.30 pm

Rally to fight back against cuts to funding flexibility for disabled people and carers and increase funding for equipment and housing modifications for disabled people. Nothing about us without us!

Speakers and more to be announced.

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 42 - RNZ - Disability rights advocate Sir Robert Martin dies

Disability rights advocate Sir Robert Martin dies

RNZ: May 1, 2024 7:26pm

Sir Robert Martin was made a knight companion in the 2020 New Year's Honours list.

Photo: Supplied / Creative Commons

IHC has confirmed the death of disability rights advocate Sir Robert Martin KNZM, in Whanganui.

In 2008, he became a Member of the NZ Order of Merit and in 2020 a Knight Companion of the NZ Order of Merit for services to people with disabilities.

Sir Robert had told RNZ he was both proud and humbled to receive a knighthood for services to people with disabilities.

He was the first New Zealander with an intellectual disability to be knighted and had served on the United Nations Committee on the Rights of Persons with Disabilities since 2017. His election was historical with him being the first person with a learning disability elected to the United Nations Treaty Body.

Sir Robert also held roles with Inclusion International and was national self advocacy advisor and trainer for IHC New Zealand between 1991 and 2010.

His early years were spent in institutional care.

Sir Robert is survived by his wife Lynda.

In a statement, Disabilities Issues Minister Louise Upston paid tribute to Sir Robert, saying New Zealand had lost a true legend.

"Our government's thoughts are with his wife Lynda, family and community, those he has worked with, the disability community in New Zealand, and the disability community internationally," Upston said.

"As the new Minister for Disability Issues, I did not have the chance to work with Sir Robert, but I am familiar with his advocacy for disability rights and that former ministers worked to support his election to the United Nations Committee. It was a proud moment for New Zealand when he was elected to this important role. I join former ministers in offering condolences," she said.

"Many disabled people in New Zealand and internationally are living better lives because of Sir Robert's achievements and commitment, and they will be mourning his passing while celebrating his legacy."

IHC chief executive Ralph Jones said his contribution to the community was unequalled.

"I have known Sir Robert for many years and his achievements were remarkable. We served together for many years on the Council of Inclusion International.

"He made a real difference to the lives of people with disabilities both in New Zealand and overseas. It's an incredible legacy."

In a post to Facebook, People First New Zealand Ngā Tāngata Tuatahi said Sir Robert's legacy would continue with his advocacy for disability rights and deinstitutionalisation, nationally and internationally.

"We know Sir Robert's passing will come as a shock to many, especially to our People First members. During this time, it is important to share your grief and feelings with your family, friends and support networks. Our Regional Coordinators are also here if you need someone to talk to."

Sir Robert was also noted for his work towards people with disabilities living in the community and supported decision making.

People First NZ national committee chairperson Ronnie Sione said Sir Robert was one of the first members of the organisation and led by example.

"People First members and people with learning disability in New Zealand and around the world have sadly lost their leader."

Sir Robert was a lifetime member and told RNZ in 2019 he wanted a leader that looked and sounded like him, and when there was not one, he decided to fill the gap.

"That's why I fought tooth and nail for the likes of People First, the only organisation in New Zealand that speaks for, and on behalf of people with learning disabilities."

YES Disability Resource Centre said on Facebook Sir Robert was "an incredible advocate, mentor and role model to many".

"We will be forever grateful and always remember his generosity of time and sharing of his story to change the world for others.

"Our love and prayers to his family."

Disability Rights Commissioner Prudence Walker said Sir Robert devoted his life to disability rights after living in institutions in his younger years, and spoke of his childhood experiences while giving evidence in the abuse in care inquiry.

"Sir Robert played a critical role in Aotearoa and internationally in upholding disabled people's right to be part of the community, and to contribute to society," Walker said.

"Kei tēnā, kei tēnā, kei tēnā anō tōna ake āhua, tōna ake mauri, tōna ake mana.

"Each and every one has their own uniqueness, life essence and presence."

His statement to the inquiry stated: "From my own experience I know that institutions places of neglect and abuse. They also mean people are denied their human rights and basically denied a proper life.

"The right to education and the right to participate, the right to live free of violence, the right to life are all things at risk in an institution."

The commission said Sir Robert made vital in-roads in helping children with disabilities in institutions around the world through influencing countries to review their policies and practice.

"Sir Robert raised the profile of Easy Read and Plain Language as important formats for making information available within the United Nations (UN) and contributed to enhancing accessibility in UN conferences and meetings.

"In an example of influencing change in specific countries, Sir Robert presented to the Spanish Congress of Deputies event on the rights of persons with learning disabilities. A week later, the Government of Spain announced persons under Guardianship would have the right to vote in the next election for the first time."

At various times, he was the Country Rapporteur for Australia, Canada and Vanuatu.

"I might be first but I most certainly don't want to be the last," Sir Robert said of his advocacy for people with learning disabilities to take to the world stage.

Day 41 - DCC - Dunedin City Council calls on government to reverse the funding cuts.

Dunedin City Council calls on government to reverse the funding cuts

YouTube: 30/04/2024

Tonight's meeting of the Dunedin City Council voted to support a motion by Councilor Mayhem for the Council to call on the government to reverse the changes to funding for disabled people.

Presentation by DPA member Chris Ford to the councilors at 6 minutes into the meeting.

The discussion 4 hours and 13 minutes into the meeting.

Day 41 - Community Law - Empowering Disability Rights Workshop

Empowering Disability Rights Workshop

Taonga Takiwātanga Charitable Trust and Auckland Disability Law are proud to present Empowering Disability Rights Workshop

Presented by Rachael Wiltshire

When Thursday 2nd May

Time 9am to 3pm

Where Waikanae Surfclub, Gisborne

Light refreshments available

Spaces are limited

Registration link

https://www.surveymonkey.com/r/F53L8F6

Day 41 - TVNZ - Govt launches independent review into disability support services

Govt launches independent review into disability support services

By: 1News Reporters

TVNZ: 30 April, 2024, 12:28pm

The Government has announced an independent review into the disability support system funded by the under-fire Ministry of Disabled People – Whaikaha.

New Disability Issues Minister Louise Upston said the review will look at what can be done to strengthen the long-term sustainability of the services to provide disabled people and carers with certainty around what they can access.

The Ministry now funds services for approximately 50,000 disabled people and equipment modification for approximately 100,000 people, administering an annual appropriation of $2.3 billion.

The Ministry had previously announced rule changes to funding for equipment, modification support and services due to financial pressure, which saw Whaikaha's chief executive apologise for the stress caused to the disabled community due to how the announcement was handled.

More recently, former Minister for Disability Issues Penny Simmonds was stripped of her portfolio.

Prime Minister Christopher Luxon, who cited "major financial issues with programmes run by the Ministry of Disabled People", said he now wanted a senior minister in the portfolio.

Upston said since coming into office the Government had received "worrying advice about the risks inherited by the ministry when it was set up less than two years ago, and whether it was adequately equipped to manage them".

"We all want to see the best outcomes for the disabled community, their families, and those who care for them, and the coalition Government is focused on maximising this support.

"A three-person review panel will be appointed within the next few weeks and will be expected to make recommendations within four months of that date. I will then consider those recommendations and report back to Cabinet on next steps. The community will be consulted on the review's findings."

She said the review will be funded through the ministry's existing budgets.

"The Government is focused on delivering better public services that improve the lives of all Kiwis. This review will help give disabled people, their families, and carers certainty around the choices they have for how they lead a good life."

The review will look at:

• The purpose of different funding streams within Disability Support Services and the appropriate level of flexibility for each.

• Eligibility for Disability Support Services, with a focus on entitlement to and allocation of funding.

• The capability and processes that need to be in place within the Ministry of Disabled People – Whaikaha to manage Disability Support Services, including for risk management, commissioning, and organisational form and structure.

• Interactions between Disability Support Services and other systems (including health, welfare, and education).

• The legal framework for Disability Support Services.

• Stakeholder relationships.

Disability support providers welcome review

Disability Support Network chief executive Peter Reynolds said disability support providers expect the review to confirm the sector is "significantly underfunded" and that the Government needs to do better for disabled people.

He said in the disability support system, nearly all the money goes to the 'frontline' and this provides an opportunity for the Government to "prove their commitment" to workers in the sector.

"We note the irony that the review's terms of reference has not been subject to any consultation with our sector, and therefore risks repeating mistakes from the botched March 18th Whaikaha announcement."

He said an estimated 10.4% increase in funding would be needed "just to keep pace with rising demand and costs in the disability sector," with 24% in total needed to make up for historic underfunding.

"Disability support providers are already struggling to keep their heads above water. If funding fails to keep up with rising need costs, services will be cut back and disabled people will not get the support they need."

Day 41 - Stuff - Government announces there will be an independent review into disability support services

Government announces there will be an independent review into disability support services

The Government has announced an independent review into the disability support system funded by the Ministry of Disabled People – Whaikaha. 

Disability Issues Minister Louise Upston said the review will look at what can be done to strengthen the long-term sustainability of Disability Support Services to provide disabled people and carers with certainty around what they can access.

“We all want to see the best outcomes for the disabled community, their families, and those who care for them, and the coalition Government is focused on maximising this support.

“Since coming into office we have received worrying advice about the risks inherited by the ministry when it was set up less than two years ago, and whether it was adequately equipped to manage them.

“Crown expenditure on Disability Support Services, adjusted for inflation, has roughly doubled since 2005-06. The ministry now funds services for approximately 50,000 disabled people and equipment modification for approximately 100,000 people, administering an annual appropriation of $2.3 billion."

A three-person review panel will be appointed within the next few weeks. It is expected to make recommendations within four months after that. Upston will then take those recommendations to Cabinet, and then consult the community. 

“This work will be funded through the ministry’s existing budgets.

Cabinet has agreed that the panel will consider: 

• The purpose of different funding streams within Disability Support Services and the appropriate level of flexibility for each.

• Eligibility for Disability Support Services, with a focus on entitlement to and allocation of funding.

• The capability and processes that need to be in place within the Ministry of Disabled People – Whaikaha to manage Disability Support Services, including for risk management, commissioning, and organisational form and structure.

• Interactions between Disability Support Services and other systems (including health, welfare, and education).

• The legal framework for Disability Support Services.

• Stakeholder relationships.

Day 41 - NZ Herald - Disability ministry’s problems revealed in confidential memo

Disability ministry’s problems revealed in confidential memo

By: Isaac Davison

The NZ Herald: 30 Apr, 2024 05:00 AM

As the Government prepares a review of the troubled Ministry of Disabled People, a confidential memo reveals its many flaws.

Whaikaha - The Ministry of Disabled People - took on huge financial risks during its hurried establishment and has not been equipped with the ability to manage them, a confidential briefing shows.

The ministry has been in the spotlight after it abruptly restricted funding to disabled people last month because it was about to run out of money - a bungle which led to the demotion of former minister Penny Simmonds.

The National-led Government is expected to confirm a review of the ministry today, barely two years after it was set up as part of the previous Government’s health reforms.

A briefing to the former Finance Minister Grant Robertson from September, obtained by the Herald, showed that officials flagged a number of significant problems within the ministry, which is responsible for commissioning $2.2 billion in support services each year.

The Department of Prime Minister and Cabinet (DPMC) stocktake said Whaikaha’s relatively short six-month establishment period placed “significant pressure” on the team tasked with setting up the ministry.

As a result, the team employed a “lift and drop” approach by simply transferring staff, functions, roles and responsibilities directly from the Ministry of Health to the new ministry.

That meant limited due diligence was carried out, especially given the size, complexity and ageing systems which were used to administer disability support services.

Whaikaha’s leadership inherited a number of risks, including a history of cost increases above inflation. Despite these increases, it had few levers to control spending and “a lack of financial management and monitoring capability to predict and respond to financial challenges”, the briefing said.

DPMC also identified a number of operational risks: “[The ministry’s] administration of disability support services is underpinned by legacy IT systems, ageing business practices, and weak assurance, audit, monitoring and fraud analysis functions which are not fit for purpose.”

The new ministry inherited workforce shortages and capacity problems from the Ministry of Health. As of September, 97 of its 289 positions remained vacant.

While the ministry now had a new organisational model, which reflected its new mandate, its operating budget had not been scaled to meet the demands of its $2.2 billion in annual commissioning, its new system leadership and policy functions, the briefing said.

DPMC reviewed Whaikaha’s five main workstreams and graded three of them as “mixed” and two as “problematic”. One of the problematic areas was the ministry’s work on building partnerships. Trust among disabled Māori people in particular was “eroding”, the briefing said.

Newly-appointed Disability Issues Minister Louise Upston said she received the briefing when she took over the portfolio last week and was “very concerned” about the financial pressure the ministry was under. The disability support system was “not fit for purpose”, she said.

“It would appear to me that while the ministry was established with the best intentions, the previous Labour Government set it up in a hurry and was aware that disability support services were not sustainable under the current settings.”

Labour Party disability issues spokeswoman Priyanca Radhakrishnan said disabled people and their advocates had long sought a dedicated ministry.

“There are a large group of people - about 1.1 million New Zealanders [who] identify with a disability and they face challenges virtually more than any other group in New Zealand and therefore want a dedicated ministry.”

She agreed that the new ministry had inherited problems from the Ministry of Health which were “less than ideal” and said it was working to establish adequate funding systems.

Radhakrishnan said Simmonds should have ensured the ministry had the funding it needed to meet cost pressures while it worked on its systemic problems.

The extent of Whaikaha’s troubles emerged last month when the ministry suddenly restricted funding for respite care and equipment purchases.

Simmonds said at the time that the ministry was about to run out of the money it was given in last year’s Budget to pay for disabled people’s allowances. She and ministry CEO Paula Tesoriero later apologised for the way the changes were announced.

The funding announcement came without warning and took disabled people, advocates and health professionals by surprise.

It also surprised Prime Minister Christopher Luxon, who removed Simmonds from the portfolio in a reshuffle last week.

The Government agreed to top up the funding for allowances. It later relaxed some of the restrictions, allowing disabled people to spend again on essential therapy and regional travel for carers, but many of the new limitations remained in place.

The ministry provides support services to 45,000 people and equipment to around 100,000 people.

Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics, and social issues.

Last Updated 30/04/2024

RESOURCES

• Confidential Memo (PDF)

Day 40 - DUNZ - Unite all disabled people

Unite all disabled people

DUNZ: 29/04/2024

Disabled people are everywhere. Disabled United (DUNZ) campaigns to unite all disabled people in the ongoing fight for our mana and our rights as full human beings. Regardless of place of residence, disability, national origin, religion, sex, political affiliation, sexuality, etc.

One small practical step is to make resources available in the many languages spoken in NZ.

Source: Stats NZ

For a start there are the official languages, English, Maori and NZ Sign Language. But there are many more spoken in migrant communities. The campaign needs to reach everyone.

In Invercargill, DUNZ supporter Kahutaiki kindly translated some English text to Maori for the "Join DUNZ" poster used in the campaign.

If you can help, we need volunteers who speak other languages to also translate material for the campaign.

For example: Samoan, Mandarin, Hindi, Tagalog, French, German, Spanish, Hebrew, Arabic, Tongan, Panjabi, Korean, etc.

English version

Maori version

Last Updated 30/04/2024

RESOURCES

• Join Disabled United A4 Poster - English ver. 4 (pdf)

• Join Disabled United A4 Poster - Hindi ver. 4 (pdf)

• Join Disabled United A4 Poster - Mandarin ver. 4 (pdf)

• Join Disabled United A4 Poster - Maori ver. 4 (pdf)

• Join Disabled United A4 Poster - Samoan ver. 4 (pdf)

• Join Disabled United A5 Poster - English ver. 3 (pdf)