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 148 - Watch: Disability services to shift from Whaikaha to MSD after budget

Watch: Disability services to shift from Whaikaha to MSD after budget

By: Russell Palmer

RNZ: 12:09pm, 15/08/2024

Whaikaha, the Ministry of Disabled People, will be restructured - losing responsibility for delivering support services and the move to a new approach put on hold.

The government has announced the move after a critical review, which says the ministry is not set up to effectively manage the scale and nature of its funding and has inadequate budget controls.

The ministry will become a standalone - no longer sharing back-office functions with the Ministry of Social Development (MSD) - tasked with strategic policy advice, advocacy and monitoring. The transfer will be managed by a taskforce, and the move to a standalone agency will be done through an Order in Council in October.

All support services will be moved to MSD, with the rollout of the Enabling Good Lives approach put on hold "to make sure access to support is fair and based on need, not location".

Funding levels for residential facility based care will also be kept at current levels, with no increases to keep up with inflation. The government will also bring back indicative budgets and monitoring of Needs Assessment and Service Coordination organisations.

In a statement, Minister for Disability Issues Louise Upston said the shift of support service delivery to MSD was "significant but necessary".

"MSD has the controls and capability already in place to better manage this funding. This will also solve the conflict of the Ministry of Disabled People - Whaikaha having both advocacy and service provision roles, making it a representative and powerful voice in government for disabled New Zealanders."

She said the government was committed to supporting disabled people, "which is why we provided a record $1.1 billion funding boost to disability support services in this year's Budget".

During a media briefing on Thursday, the minister couldn't rule out job cuts, saying: "A large number of people will be in the new ministry or in the Disability Support service and those details will be worked through at pace."

It would be "disappointing" if people lost their jobs but that was not the intention of the restructure, she said.

Upston stressed no policy decisions would be made overnight and the disability community would need to be involved.

"We won't be making any decisions regarding eligibility criteria for flexible funding until later this year after consulting with the disability community," Upston said.

"Their voice and insights will be so important in getting this right."

She said she was very aware of the impact of changes to the flexibility funding in March and how distressing they were.

"That will never happen again under my watch. ...We will consult with the disabled community to ensure any changes that additional funding we have put in gets to those with highest needs."

How did we get here?

Changes to the way disability services were funded were rolled out in March with little notice and announced via the ministry's social media, not long into the coalition's term.

The moves were a surprise to those using the services, and community groups rallied in opposition to them, and then-minister Penny Simmonds admitted inadequate communication.

She had said the changes were the result of cost overruns at the ministry.

Cabinet then put a closer lens over changes at the ministry, and Simmonds was later dumped from the portfolio.

About a quarter of New Zealanders has some sort of disability. Disabled people often make heavy use of the health system but the constraints placed on disabled people by society extend far beyond health to things like employment, housing, transport, education and more.

The creation of the ministry, Whaikaha, was announced by the then-Labour government in 2021, promising it would be a single point of contact for disabled people.

The government also promised a nationwide rollout of the Enabling Good Lives approach to disability support services, which focuses on giving disabled people more choice in how they can spend the funding allocated to them. However, the portfolio changed hands a few times and funding for that approach has long been a concern.

Those decisions followed the Heather-Simpson-led Health and Disability review which, despite its name, failed to meaningfully consult disabled people, and barely mentioned or examined disability, accessibility, or related support services.

Disability was not even mentioned separately until page 150.

Advocacy groups had for decades been calling for support to be shifted out of the health system, saying disability was not solely a health issue - and disabled people were often being passed between government departments, with different levels of support based arbitrarily on the cause of a disability rather than need.

The huge disparity between the support offered to disabled people through ACC, compared to those who access it through DHBs, has also been a major concern.

ACC has also been shown to be biased against women, Māori and Pasifika, and disabled people who needed help because of an injury had to juggle the ACC and welfare systems at the same time.

Last Updated 15/08/2024

RESOURCES

• https://www.rnz.co.nz/news/political/525212/watch-disability-services-to-shift-from-whaikaha-to-msd-after-budget

Day 103 - RNZ - Care workers hold rallies for pay equity across NZ

Care workers hold rallies for pay equity across NZ

By: Anna Sargent

RNZ: 09:32pm 1 July 2024

Christchurch care and support workers at a rally in Hornby.

Photo: Anna Sargent

Care and support workers have held rallies around the country calling on the government to fully fund a pay equity settlement.

The unions E tū, the PSA and the New Zealand Nurses Organisation (NZNO) said the rallies were the next step in a long campaign for the workers' pay equity claim, which was filed against 15 employers almost two years ago.

The claim could have implications for 65,000 people working in disability, home and mental health support, as well as aged care work, the unions said.

Last month, the unions took the claim to the Employment Relations Authority.

E tū activist and residential aged care worker Marianne Bishop said the government needed to front up.

"We have been waiting far too long for a decent pay equity settlement," she said.

"The care and support workforce is an essential part of our health system and our wider communities. We do these jobs because we love the work and we want to do the best we can.

"We are really worried about the future of the sector if there isn't a proper settlement really soon. We can't attract and retain workers if they know they're only going to be paid a pittance. We have an ageing workforce and an ageing population - unless we fix this now, it's a recipe for disaster."

Christchurch care and support workers flank local MP Megan Woods at a rally in Hornby.

Photo: Anna Sargent

In Christchurch, about 40 people waved signs and flags on the footpath near the Hornby Club.

NZNO delegate Val Fifita said workers were there protesting for equal pay.

"Our counterparts like the DHB have all got pay rises but we haven't. We do the same amount of work for the same patients and everything. All we're asking really is to be paid what we're worth.

"We're really hoping the government will come through and support the equal pay case."

In 2017, the government signed a $2 billion equity settlement giving tens of thousands of care and support workers a pay rise.

PSA spokesperson Brad Sparrow said care and support workers were some of the lowest paid.

"So just really need to get our wages up to meet the cost of living and so we don't lose some of our people supporting our most vulnerable over to the Aussies," he said.

In a statement, Health New Zealand/Te Whatu Ora said it was aware the Public Service Association applied to the Employment Relations Authority last month to determine remuneration rates in relation to the 1 July 2022 Care and Support Worker Pay Equity Claim.

"Health NZ is not the employer of this workforce and is not a party to the claim," it said.

"However, Health NZ as a major funder, has been in ongoing discussions with employers to support them with resolving the claim made against them."

Last Updated 02/07/2024

RESOURCES

• https://www.rnz.co.nz/news/national/521014/care-workers-hold-rallies-for-pay-equity-across-nz

• E tū,

• PSA 

• New Zealand Nurses Organisation (NZNO)

• 1 July 2022 Care and Support Worker Pay Equity Claim

Day 84 - RNZ - 'It's hard work' - Funding cuts hit carers helping people with disabilities

'It's hard work' - Funding cuts hit carers helping people with disabilities

By: 

RNZ: 12:37 pm, 11 June 2024

Ann Muir coaches young para athlete Matakorama Waipouri at the Para Lawn Bowls Commonwealth Games announcement. 

Photo: © Photosport Ltd 2017 / Alisha Lovrich

A disability advocate almost missed out on being able to have her say at a conference for disabled youth in Wellington, because her carer's flights could not be paid for due to recent restrictions on support funding.

Twenty-year-old Matakorama Waipouri - who has cerebral palsy - has spent the past few years advocating for young people with disabilities.

Her mum is her full-time carer, and Waipouri said she has to rely on her to help her eat.

In March, The Ministry of Disabled People announced new limits on what disabled people could purchase with their funding in March. This included no more accommodation or travel-related expenses for caregivers or parents.

At the end of the month, Waipouri - who lived in Auckland - was getting ready to attend an I-Lead conference at Parliament in Wellington.

The conference is an annual gathering for young people with disabilities to address challenges they face and work on solving key issues, before presenting submissions to policymakers, including the minister for disability issues.

"I've always been quite quiet," Waipouri said, "but in high school I became involved with youth council and found a passion for advocacy and realised I wanted to be a role model for disabled youth and be a voice for them."

Young Para Athlete Matakorama Waipouri receives a Borobi Mascot at the Para Lawn Bowls Commonwealth Games announcement.

Photo: © Photosport Ltd 2017 / Alisha Lovrich

Waipouri said she was excited to have the chance to visit Parliament and discuss issues that she and others were facing, but the government's announcement to limit funding for carers meant she almost did not get to go

"My mum is my full-time carer and doesn't get paid very well for the support she gives me every single day of my life. The changes happened a couple of weeks before I was due to head down to Wellington and the plan had always been for my mum to come with me to help.

"She ended up having to pay for our flights and I paid for our accommodation."

Waipouri said she felt as though people with disabilities were being "pushed to the side lines" by the government.

"The funding changes made my blood boil to be honest, and I think it's a bunch of nonsense for them to say carers were spending funding on things like pedicures and cigarettes. I've seen how hard my mum works to care for me, it's hard work for carers.

"Who the heck are these people who get to tell us what our carers do and don't need?"

Protest for the disabled.

Photo: RNZ / Nate McKinnon

At the conference, Waipouri said the group were able to come up with 23 submissions for the government to look at.

"We're trying to make more possibilities for us, a lot of places still aren't accessible and I want the government to look into our community and what we go through more."

Waipouri said there needed to be more young voices in Parliament, especially a young person who had a disability.

"It would be good to have someone who could actually speak about what we go through in our daily lives and what issues there are".

Disability Issues Minister Louise Upston said the coalition government wanted the "best outcomes for disabled people and their families".

Upston noted an additional $1.1 billion over five years for disability services had been announced in the 2024 budget.

"We've set up an independent review to examine what can be done to strengthen the long-term sustainability of disability services, address operational risks that the Ministry for disabled people inherited and provide the community certainty around support services they can access."

Recommendations from the review are expected in the next few months.

Last Updated 17/06/2024

RESOURCES

• 
  

Day 75 - RNZ - Making live events accessible for everyone

Making live events accessible for everyone

By: Culture 101

RNZ: 2.30pm, 2/06/2024

BATS Theatre

Photo: supplied

Live events are often where we come together as communities, sharing passions and considering the issues concerning us. It’s important they’re accessible to all. 

Except they’re not. Many people have impairments that can make it more difficult or impossible to attend live events. Deaf and disability advocates argue in fact it is the society that is creating the disability, not the person. 

A recent 2024 survey in the UK  for example found more than half of people with disabilities face problems while attending live events. 

The issues range from physical access to theatres, toilets, or bars to being able to hear, see, or even simply have time and assistance to get into a venue. 

BATS Theatre in Pōneke Wellington has already developed strong accessibility guidelines and a way to request help online. But thanks to recent funding from ANZ Staff Foundation it has a new programme to make things more accessible via live streaming, captioning and audio description for up to 10 theatre productions between May and July.

Accessibility is also about the work that is programmed. People need to see themselves on stage. This programme is also championing work made by and for deaf and disabled communities.

Jonty Hendry

Photo: supplied

"Theatre has the power to unite and uplift,” says BATS CEO Jonty Hendry. 

“It is our responsibility as artists to ensure that the live theatre experience is accessible to everyone.” 

Broadcasting theatre digitally in real time and on demand got a massive push when Covid hit, but it’s also something this programme is continuing to push. Depending on the production, live captions are also to be displayed on stage or via live streaming. 

Then there are the needs of the blind and low vision communities. BATS includes some audio-described performances. With these, the audio describer gives descriptions of the visual elements in between the dialogue or songs. They narrate what’s happening on stage like the costumes, the set design and where it’s set, as well as body language, facial expression, and movements on the stage by the performers. The audio describer’s narration is transmitted to wireless receivers and headsets worn by the audience members. It doesn’t impact the experience for other audience members.

Helen Vivienne Fletcher and her service dog Bindy 

Photo: supplied

Helen Vivienne Fletcher is a writer, playwright, poet and theatre artist. She's been writing novels since she was 13 and now she has 18 books to her name, including work for children, young adults and adults.  

Fletcher’s production Confessions of a Sleepwalking Insomniac is on the BATS stage and live streamed from 5-9 June. This solo play that Fletcher has written and produced deals with the disabling effect of sleep disorders and her journey to getting an assistance dog. 

The show will not only have a New Zealand Sign Language Interpreter but also audio description, and captioning with the live stream. 

“The disability community is a close-knit group,” Fletcher says.

“As a disabled theatre practitioner, it can be really hard knowing that your production might exclude your friends. With tight budgets, you can end up having to choose which group to exclude, as you can only afford to provide for one type of access needs.”

While there is a long way to go, in Aotearoa New Zealand there’s been a lot of good work in this space in recent years. 

In March, Creative New Zealand launched their Tapatahi Accessibility Policy and Action Plan 2023–2028 working with a reference group of Deaf and disabled artists, policy and disability rights advocates. Arts Access Aotearoa have done significant work with arts producers nationally to improve access. Both Arts Access and playwrights agency Playmarket have published guides to assist the arts to increase accessibility in recent years.

Last Updated 05/06/2024

RESOURCES

• Making live events accessible for everyone

• Creative New Zealand launched their Tapatahi Accessibility Policy and Action Plan 2023–2028

• Arts Access Aotearoa

Day 74 - RNZ - Budget 2024 a 'mixed bag' for disabled people

Budget 2024 a 'mixed bag' for disabled people

By: Chris Ford

RNZ: 2:19 pm, Saturday, June 1, 2024

Opinion: Disabled people around the country are feeling a mixture of disappointment and relief in the new coalition government's first Budget.

There is relief that there is a funding boost for Whaikaha to ensure continuity of disability support funding. There is also deep disappointment that much-needed flexibility for individualised funding and respite care was not restored.

The $1.1 billion of new funding was across a five-year timeframe, amounting to an average increase of $220 million per year. This extra money will enable the disability support system to continue operating, but without a lot of the flexibility available before.

The fact there was a funding boost, but not a restoration in flexibility, tells us that government has not been listening to disabled people, families, whānau and carers throughout the motu who have been speaking out at rallies, in the media and in letters to ministers.

Our primary call was for the return of flexibility, because having it gives disabled people and whānau the control to determine what supports work for us as individuals. We know from many years of trials that flexibility leads to improved safety and wellbeing outcomes for disabled people.

We are also awaiting, with trepidation, the outcome of the disability support review implemented by Disability Issues Minister Louise Upston. The review panel needs to listen to Aotearoa's disability community and convey to government our views, including our need for flexible support.

Equally importantly, disability support changes are not the only government policy that have impacted on this country's disabled community.

As made clear in a report released this week by the Disabled Persons Assembly (DPA) and Fairer Futures, entitled A Thousand Cuts, and in an open letter to Finance Minister Nicola Willis and Upston (now signed by over 60 organisations), the cumulative impacts of the coalition government's policies - announced both before the Budget and within it - will make life harder for many disabled people.

Cumulative impacts range across government policies in employment, health, housing, welfare and Te Tiriti, among others.

From DPA's analysis of the Budget and earlier announced measures, we identified the following impacts:

• Minimum wage exemption remains: We are very disappointed to see that the new coalition government will not carry through the previous government's commitment to getting rid of this unfair, discriminatory policy by 2025. Its continuation will mean that disabled people can be paid as little as $2 per hour (before tax) while working mostly in segregated, sheltered workshop environments. We as a country don't tolerate people being paid differently on account of their gender or migration status; nor should we accept the exploitation-level pay given to disabled people. The United Nations has advised the government to end this policy. This government deciding not to do so will mean that this country will be in breach of its human rights obligations towards disabled people in this regard.

• Tangata whaikaha Māori: We are very concerned around the breaches of Te Tiriti rights and tino rangatiratanga for Māori disabled throughout Aotearoa. It is not possible to uphold self-determination and leadership for all disabled people without honouring Te Tiriti. The increase in mental distress for Māori with the current political environment also causes us major apprehension. There is no clear path to deal with the disparities experienced by Māori disabled in comparison to their non-Māori disabled peers when it comes to this Budget.

• Health: The well-signalled removal of universal free prescriptions and the return of a $5 per item co-payment will impact on many disabled people, particularly those who don't qualify for the Community Services Card (CSC) or have children over the age of 14. While DPA welcomes the retention of free scripts for CSC holders, people over 65 and children, the comparatively low-income threshold for CSC eligibility means that many disabled people in work (who are disproportionately minimum-wage earners) will still have to pay more for prescription items (before the prescription cap applies), as many disabled people need medications to ensure that their impairment/condition remains stable.

• Housing: This year's Budget saw a significant reduction in spending on emergency and transitional housing, something that is accessed by many disabled people (as it was by this writer in 2020-21). While the emergency/transitional housing system is imperfect, the government's cuts will see even more people become homeless throughout the motu. If the government wants to make a dent in the housing waitlist, which includes many disabled people, then it should invest significantly in Kāinga Ora to build more homes (as the previous government did) and not just leave the non-government social housing sector to carry the burden.

• Welfare: The government has announced moves to introduce a traffic-light based sanctions system, which will impact on many disabled people who access the JobSeeker Support (medically deferred) Payment - formerly the Sickness Benefit. Many disabled people on this benefit are there due to having a health condition or impairment which prevents full-time work and, in an increasing number of cases, not being able to get onto the Supported Living Payment (formerly the Invalids Benefit) due to its much stricter qualifying criteria. Penalising disabled people who find it difficult to acquire jobs due to facing discrimination from employers or not being able to work in a conventional 9-to-5 job is unjust, unfair and immoral. The Government's earlier moves that saw benefits being de-linked from being raised either by the increase in consumer prices or average wages (whichever was the highest) will leave disabled people and other beneficiaries thousands of dollars worse off over the coming years too.

Whilst our worst fears weren't realised in Budget 2024, we are aware that the impact of many of the policy changes being brought in for disabled people will only become apparent as the year progresses.

Disabled Person's Assembly will continue to watch this space and to speak out for disabled people's rights.

*Chris Ford is policy advisor (southern and central) at DPA New Zealand. This article represents DPA's views on Budget 2024.

Last Updated 04/06/2024

RESOURCES

• A Thousand Cuts (pdf)

• DPA

• MSD: Continuing the Minimum Wage Exemption scheme – and stopping the development of a wage supplement

• MSD: Continuing the Minimum Wage Exemption scheme – and stopping the development of a wage supplement (pdf)

• 2024 Budget - Ministry of Disabled People – Whaikaha (pdf)

Day 71 - RNZ - Distressed parents say Whaikaha's new rules will impede progress of disabled kids

Distressed parents say Whaikaha's new rules will impede progress of disabled kids

By: Jimmy Ellingham, Checkpoint reporter

jimmy.ellingham@rnz.co.nz

RNZ: 7:35 pm on 29 May 2024 

Baylis goes to Little Stars twice a week, including for hands-on sessions with Heather Last. Photo: RNZ / Jimmy Ellingham

Parents of children with disabilities are concerned changes to funding rules will halt their children's development.

The Ministry of Disabled People, Whaikaha, no longer allows parents who are given annual budgets for their children's needs to spend the money on privately provided services, such as therapy, when similar ones are publicly funded.

But parents spoken to by Checkpoint dispute that what is on offer publicly is comparable with the hands-on help they access privately using those budgets.

One such child is 9-year-old Samuel Baylis, who has difficulty with his balance, speech and everyday activities such as eating.

He can crawl, but he cannot walk or stand by himself.

He attends his Palmerston North primary school, Whakarongo, in a wheelchair, and twice a week his mum, Jenny Baylis, takes him to private physical and occupational therapy at the Little Stars centre in the city.

Samuel has been diagnosed with multiple mitocondrial dysfunction syndrome, type six.

Through Whaikaha his mother is given an annual budget to spend on getting him the help he needs.

But, when that allocation rolls over in August she's worried that, under changes announced in March, it can't be spent at Little Stars or other such private providers because Whaikaha says the Education Ministry provides something similar at school.

Samuel's mother, Jenny Baylis, is worried she'll no longer be able to spend their budget for Samuel's care at Little Stars. Photo: RNZ / Jimmy Ellingham

Baylis said the school's offering was not anywhere near what Samuel received at Little Stars.

"They have a physical therapist and occupational therapist that visit the school and will visit Samuel at school, but they provide advice and equipment, and the advice is around how to adapt the curriculum for Samuel while he's at school.

"Little Stars is totally different to the service the Ministry of Education offer."

At Little Stars Samuel and other children receive hands-on therapy integrating their needs, rather than having a series of appointments with specialist physical, language or other therapists, with no link between them.

Baylis said she was worried Samuel's progress would stall if he no longer received that.

"He's not going to be given every opportunity he should be given to succeed in daily life tasks, which able-bodied people take for granted."

Elijah, who is 18 months old, also attends the Little Stars centre.

He gets no Whaikaha funding for private therapy there. His mother, Crystal Ling, said she had been told Health New Zealand provided something similar, and he did not yet have a definite diagnosis.

He has decreased muscle tone, and floppy airways, and started seeing paediatric occupational therapist Heather Last at Little Stars - for free - in January.

"I can see his improvement," Ling said.

"When he first came here he couldn't even sit properly. He was wobbly, but now he can sit still. I can leave him and I can go to the bathroom quickly and come back, but prior to that I had to be with him 24/ 7."

Elijah's mother Crystal Ling says she gets a visit from a publicly funded therapist just once a month. Photo: RNZ / Jimmy Ellingham

The Health NZ service simply involved quick visits to their home, Ling said. "They only come to see him once a month for half an hour."

She said it was only time for them to show books or pamphlets, and give information about groups to join - a long way from his regular hands-on sessions with Last.

Ling has to look after Elijah so she cannot work, meaning her husband's income is the only money coming in at home. It can't cover the costs of hands-on therapy.

Last, the Little Stars clinical manager, said working closely with children with disabilities when they were young was key to allowing them to develop.

"It's great if you can do that at an age-appropriate time because that's when the brain's primed up to learn it and it's much harder to turn it around when the children are older. Maybe they've got very stiff. If they're floppy they get more floppy. It's hard to teach at a later age."

For Elijah, "intensive input is important to teach him all the things that other children of his age would just acquire naturally".

Last said just four months ago Elijah was terrified to move, however, he had shown improvement thanks to early-intervention therapy.

Samuel Baylis was working on skills to support himself, such as feeding, Last said.

Pip Cook is the chairperson of the charity board behind Little Stars.

She said two families already had to stop using its therapists because of the funding changes, leaving her worried about the pressures they now faced.

"We are trying to support families through a world of disability, which is incredibly stressful for families," she said.

"Two out of three marriages don't survive having children with disabilities. It causes a lot of poverty in families. Often parents can't work because there's no after-school care, no holiday programmes."

Little Stars was working with more than 25 families, and was soon moving to a new premises rent free.

Policy changes 'difficult' - Whaikaha

A statement from Whaikaha said it acknowledged how difficult the situation was for families and carers wanting to access support through Little Stars.

"Some difficult policy changes have been required on the use of ministry-funded personal budgets to manage the overall costs within the disability system."

The statement said Whaikaha funded services similar to those paid for by some families from their ministry budgets.

"A decision has been made that ministry-funded personal budgets cannot be used to purchase services that are already funded and available free of charge across New Zealand.

"The ministry must take a balanced and fair approach to what we fund so that spending on disability supports remains within budget."

Last Updated 30/05/2024

RESOURCES

• Checkpoint Interview

• RNZ Disability tag

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 26 - RNZ - Accessibility impacting disabled students' learning, representatives say

Accessibility impacting disabled students' learning, representatives say

By Pretoria Gordon

RNZ: 7:20pm, 15 March 2024

Accessibility issues with some facilities at universities and polytechnics is taking a toll on disabled students' ability to study, the National Disabled Students' Association says.

Accessibility issues with some facilities at universities and polytechnics is taking a toll on disabled students' ability to study, the National Disabled Students' Association says.

Some have even been humiliated by having to be carried into lecture halls, the association, which is calling for better accessibility legislation, says.

The Tertiary Education Commission estimates about 20 percent of tertiary students had some form of disability.

University of Waikato student Nikki van Dijk uses a wheelchair and said getting to her classes was a huge battle.

"A lot of the doors are not automated, a lot of them are quite narrow, so my chair doesn't fit through, so many stairs it's not funny," she said.

"And I know this is a wide-spread issue for a lot of different disabled students."

Van Dijk said she had to plan her papers around what rooms they were in.

"It's quite challenging, and it's quite isolating because you're trying your hardest to complete a degree, and you've got this giant barrier stopping you, and it just makes what can already be quite stressful, an even more stressful time."

But van Dijk said it was not the fault of the university.

She said all universities across New Zealand were doing the best they could with the resources they had. The buildings were either too old to be upgraded or would need substantial renovation.

"Universities are pretty keen to help and do what they can to make things more accessible for us.

"We have the pleasure of having universities that are quite well-established in this country, but as a result there's not a lot to do to change the facilities.

"But sometimes they go, 'Okay, well we could change rooms'. I've heard of that happening - I've seen it happen."

National Disabled Students' Association co-president Sean Prenter called on the government to help.

"We don't have accessibility legislation with teeth to mean that the providers themselves have a responsibility, and so actually disability is at the front of those access conversations, and it's also person-centred," he said.

He said there was currently no way - if you had an issue with accessibility - to monitor, give feedback and then hold government to account "for what is an inaccessible education system".

Van Dijk said it also needed to be more than the bare minimum.

"A lot of it was only considering things like wheelchair access, but there are things like all the fluorescent lights cause seizures, and they triggered nausea for a lot of people such as those with brain injuries, and so any legislation, any policy, needs to have more comprehensive accessibility understanding."

Disability Issues Minister Penny Simmonds said it was incredibly disappointing that tertiary students were facing these barriers.

Whaikaha - the Ministry of Disabled People - was working on the Accessibility for New Zealanders Bill to help, Simmonds said.

"Most of the disabled community were pinning their hopes on making changes to things exactly like that, making public buildings more accessible and putting in place more structure around what's required, but the bill as it stood - as it came back from the select committee - didn't do that," she said.

Simmonds said they were currently taking another look at it.

"We've paused it, and we're doing an analysis of what the legislation in Canada and the US and Australia are like to see what the gaps are, to see whether we actually can amend the legislation as it is, or whether we need to start again."

But Simmonds said they would not be consulting with the disabled community until after accessible legislation overseas was looked at.

Analysis and consultation would be done by the end of the year, she said.

In the meantime, van Dijk said the most helpful thing institutions could do was make lecture recordings universal.

"Lecture recordings have been incredibly useful, so you don't feel like you're missing out," she said.

"Us disabled students in groups are also able to go, 'Okay, we can access this building, let's watch a recording together'."

"A lot of disabled individuals are having to travel for appointments, in and out of hospital, and sometimes they just don't have the capacity to be on campus, so in a way it's actually very, very inclusive to have lecture recordings, and exactly that, it allows them to connect within the disability community with others who are suffering the same issue."

Last Updated 16/04/2024

RESOURCES

• 
  

Day 25 - RNZ - Continued funding concerns among disabled communities

Continued funding concerns among disabled communities

By Georgie Hanafin

RNZ: 12/04/2024 6:49 am

For disabled Christchurch man Nick Stoneman hunger is a familiar feeling.

Living paycheck to paycheck and struggling to juggle the costs of having disabilities with keeping his power and phone connected is exhausting and unfair, he said.

Stoneman relied on a full-time supported living payment, but said changes to individualised funding meant he did not qualify for extra support.

Born with an averted foot, where the foot points downward and inward, Stoneman used a specialised wheelchair from a young age.

From the moment he was born he wore a frog splint, designed to keep his legs splayed and his foot in the right position, which improved his ability to walk. But, he still suffered from chronic pain and ongoing problems with mobility.

He also had autism and mental health issues which are compounded when unexpected bills arise.

Stoneman said his supported living payment barely covered the basics and forced him to choose between treatment and groceries.

"I'm quite often left hungry and I can't afford to go to the supermarket and put food in the trolley. The times that I can go to the supermarket and do that, generally I'd try spend no more than $30 a week. And $30 a week doesn't cut it," he said.

He was among a chorus of people furious at Minister for Disability Issues Penny Simmonds for comments she made about how disability funding was being used.

The new rules for purchasing equipment and support services have sparked widespread distress and anger among the disabled community, and a petition opposing the changes attracted more than 10,000 signatures in its first 24 hours.

Stoneman said people should have the freedom to use their funding however they choose.

"We shouldn't have to justify what we've spent the money on so long as it's clearly defined that we don't spend it on lotto tickets, alcohol, that kind of thing. And most people with disabilities wouldn't be able to afford alcohol, let alone buy Lotto tickets."

Many people were forced to resort to advances from the Work and Income to manage their finances, resulting in significant debts deducted from their benefits, he said.

Renee Cossey, who cares for her daughter with autism, said carers were justified in how they spent their funding.

The job was incredibly physically demanding and it made sense people would use their funding on hair cuts and massages, she said.

"They're using it to repair their hair that's been half yanked out of their head or that looks a mess because they've spent all day with a child thrashing them and moving their hair out the way, or lifting an adult child and spraining something, or looking after a parent who doesn't remember who you are and only remembers you when you have your hair dyed blonde, because you were blonde as a child."

Her family got $760 of 'personal care' individualised funding per year, which excluded household management and respite care, and was meant to support her daughter in learning basic life skills, like regulating her emotions.

Cossey had not used her funding to pay for travel, but said that was within the guidelines and was the most cost effective way to get respite.

"It's great for us and it's great for our child because she comes back relaxed, we come back relaxed, and when we start into our duties again caring, it feels like, yeah, we can cope with this now."

Christchurch carer and mum-of-four, Jo, who did not wish to use her surname, said the changes took an already small world and made it even smaller.

Jo's mum, who was in her 70's and had cerebral palsy, moved to Christchurch from Palmerston North in 2022 to be closer to family care.

Jo said her mum had every right to spend her funding visiting friends, attending funerals, and going to events back home in Palmerston North.

"She would need a carer to come with her. She cannot get on and off a plane by herself. She cannot even get into a toilet on her own. She has every right to go to that funeral and have a carer paid for," Jo said.

While she looked after her mum, Jo's husband Terry is at home caring for their three disabled children, aged between 14 and 21.

The couple's eldest son needed round-the-clock assistance with simple daily tasks and had access to $10,000 of individualised funding.

At first the family was overwhelmed with the idea of so much money focused on their son, Jo said.

However the amount left after deducting payroll fees, ACC, superannuation and other expenses would only be enough to pay a carer for about two hours per week, she said.

"I think my first words were, thank you so much. And then I went, hang on, hang on. If I drop dead tomorrow, how the hell, what happens to him? You can't pay someone 1.8 hours a day to after him. His needs are much higher than that."

Simmonds declined to be interviewed, but in a statement said improvements were needed.

"We all want to see the best outcomes for the disabled community and their families, and it is clear there needs to be improvements to the services delivered.

"That's why I am urgently prioritising an independent review to understand and set out to fix the ongoing issues the Ministry faces."

She said the Government was committed to the disabled community and would be providing "considerably more money at the next Budget".

Day 15 - RNZ - The Detail - Ministry Funding Debacle

Ministry funding debacle

From The Detail, 5:00 am today

Tom Kitchin, co-host of The Detail

@inkitchnz tom.kitchin@rnz.co.nz

Disability funding changes have caused stress, uncertainty, and fear among families. How was this controversial decision made, and what happens now?

Listen (Duration 24':05")

  

A shock announcement about service cuts from the Ministry of Disabled People, delivered via social media, caused panic and grief. That was just the beginning of a chaotic few weeks, involving condemnations of the move from outside and inside the government and an apology from the ministry - but crucially, not a reversal of the changes.

Today's episode of The Detail explains how it unfolded.

"Whaikaha [Ministry of Disabled People] put a post on its social media pages and updated its website to say that the purchasing guidelines had been changed," says Newsroom journalist Emma Hatton.

"The purchasing guidelines are a list of criteria that people who receive certain disability supports can use to guide whether they are able to purchase something...what Whaikaha did is they changed that criteria and they made it more restrictive so they narrowed what people could purchase."

Dr Rebekah Graham, the national executive officer of Parents of Vision Impaired NZ, says the funding stream most parents receive is called Carer Support.

"Traditionally you could only use it to pay for a support worker," she says.

But that changed over time and became more flexible, to allow families to meet their individual needs.

"Instead of just being for a care worker, you could actually start using it for things that gave you, as the carer, a bit of a break."

This could include things like going overseas to attend a specialised programme, a tablet to keep a child engaged while a parent had a moment to sit down, or devices used to monitor a diabetic child's blood sugar overnight so that parents don't have to wake every few hours to make sure their child doesn't die in their sleep.

Graham says that, as she understands it, these changes will get rid of those options.

"It hasn't been this grim in such a long time. Because as parents we're so enmeshed in the system, it's so familiar to us, we recognise the language. As soon as we read the announcement, we knew that all of our supports were gone... some parents were really distressed."

Emma Hatton says the ministry told their minister, Penny Simmonds, about budget issues on February 22.

"They said that they were getting really close to spending more than what they had been allocated in the budget, and so in order to make it to the end of the financial year, they would need to stop spending. One of the ways they decided to stop spending is by restricting what disabled people and their carers could purchase."

What happened between then and the announcement remains a bit of a mystery, Hatton says.

However, Finance Minister Nicola Willis has said she was caught by surprise with the announcement. The budget will be topped up to get through the end of the year, but "that doesn't change what has been adjusted with the purchasing guidelines, so that doesn't actually help real people on the ground," Hatton says.

"Willis has confirmed that Cabinet has decided that any further decisions now that this ministry makes about changing its criteria or its funds or anything that like needs to be properly consulted, properly sequenced.

"So basically, if this ministry wants to do anything from now on, it's going to have to get its minister Penny Simmonds to take a paper to Cabinet and then Cabinet will have to sign off on it."

"That's quite a level of oversight, quite a step up."

Willis has promised the ministry will get "vast orders of magnitude more" in frontline service funding - but how much remains unclear.

Media - RNZ

Radio New Zealand, commonly known as Radio NZ or simply RNZ, is a New Zealand public-service radio broadcaster and Crown entity that was established under the Radio New Zealand Act 1995. Wikipedia

CEO: Paul Thompson (Sept 2013–)

Founded: 1995

Owner: Minister of Finance (50%); Minister for Media and Communications (50%)

Headquarters: Radio New Zealand House, Wellington.

Broadcast 24 hours a day 7 days a week

Reporters Email story ideas or press releases to the RNZ News team: news@rnz.co.nz.

RESOURCES

• www.rnz.co.nz

• List of articles and programmes about the funding cuts

• Wikipedia

Day 10 - RNZ - Government thinks disabled 'add no value to society' - protester

Government thinks disabled 'add no value to society' - protester

RNZ 7:40pm March 28, 2024

By Georgie Hanafin

Disability funding changes have made people feel worthless and bullied by the government, a Christchurch father of four says.

Terry was among dozens of people who attended a rally at the Bridge of Remembrance after the Ministry for Disabled People blindsided families with sudden changes to purchasing rules for equipment, services and respite care.

Cabinet has since assumed responsibility for decisions on disability funding, while Labour has called for Disability Issues Minister Penny Simmonds to be sacked.

Photo: RNZ / Nate McKinnon

Terry, who did not wish to use his surname, described the move as a personal attack on the country's most vulnerable by an uncaring government.

He said the decision made people feel like they were at the bottom of the "social hierarchy".

"We add no value to society as far as they are concerned. We are not rich landlords. We don't own yachts. We are just the marginalised. We're just at the bottom.

"This is a despicable government. It does not care about these people."

Photo: RNZ / Nate McKinnon

An estimated 30 protesters also held a rally outside Simmonds' electorate office in Invercargill on Thursday morning, including Tracy Peters, who has paraplegia.

She said people with disabilities were discriminated against on a daily basis, and many at the protest were worried people would not understand the ramifications of the changes.

Mother-of-two Sarah Hinchey could not join the Christchurch protest because she was caring for her autistic teenage daughters. She said it was difficult for some people with disabilities to attend public rallies because they were sensitive to noise or big crowds.

Photo: RNZ / Nate McKinnon

Hinchey said the government should consult more widely with families.

"One of the major failings of the funding issue was the fact they never sought consultation," she said.

"They have admitted that and apologised, saying they'll do better in the future, yet they are doing nothing about it now to correct the situation. What they need is to truly listen to us - not just me and other caregivers, but a wide range of people, and especially the disabled people themselves. That is the bare minimum I would expect."

Hinchey said Simmonds was not suitable for the job.

Simmonds and Prime Minister Christopher Luxon have both acknowledged the changes were not communicated properly at the time. Simmonds has apologised for the way the changes were handled.

Day 4 - RNZ - Why we cannot let the disability support changes happen

Why we cannot let the disability support changes happen

RNZ website published  5:28 pm on 21 March 2024

By Henrietta Bollinger*

Photo: 

Opinion - As a disabled person, choice is never a given. It is a negotiation, it is a fight. It is difficult to overstate how disarming it feels to watch the world, the possibilities and choices you thought you had in life, narrow right in front of you.

Last week, I was planning to travel for my work as a writer, looking into booking my support worker onto a plane next to me so that I could safely fly. Last week, I was looking at adaptations to my workplace bathroom.

Last week, I could buy my support workers a meal if they worked a long shift.

Everyday things I thought I could plan for. I don't know which of these things is possible this week.

For disabled people and whānau, the infrastructure of our everyday lives is being thrown into turmoil by a minister working in our names and a ministry we fought to establish.

On Monday, Whaikaha announced radical and limiting changes to how disability support funds can be spent, as well as changes to Equipment and Modifications Services, which covers things like wheelchair repairs and housing alterations.

These are apparently not cuts. But that is semantics. Having funding but not being able to use it is the same thing, in effect, when it comes to our daily lives.

The changes are being framed as urgent temporary measures for a ministry within days of blowing their budget.

No matter how temporary these changes turn out to be, they threaten to undermine a trust between government and disabled people slowly built over decades. Built on the fragile hope that after all this time we might be trusted to run our own lives.

I have been managing my own disability support since shortly after I moved out of home, roughly a decade ago.

Before I managed my funding, the providers who got me out of bed and support my daily life argued with me about everything from who came into the house to what time I could shower. They were limited in where they could help me to go outside my home.

Henrietta Bollinger's book was published in 2023. Photo: Tender Press

When I moved from boarding in an extended family member's house to a rented apartment I was called selfish because I hadn't considered how hard it would be for my support provider to find workers in town. It would be easier for my support agency if I stayed in the suburbs.

My co-ordinator had other clients to think about. It's not all about you, she said of my life. Who else should it be about?
Individualised funding was a response to this. It is my life, I thought: It is about me. In individualised funding, here was a model beginning to recognise that. Through we had further to go. Not in how far we could push the boat out just how equitable an every day life could be.

These days, I am woken in the morning by one of my disability support workers with a cup of tea and we discuss what I have planned for the day, which in my life can range from a day at home, a day in the office, and travel when needed.

Managing my own support budget, being trusted with it was a revelation.

The imperfect but enabling ways it has worked for me have motivated me to work for increased flexibility in all disabled people's lives.

It has allowed my life in ways many non-disabled people take for granted.

In non-disabled lives when you get out of bed in the morning, where you go, who goes with you, whether you an accept a job offer that includes travel, and what you might buy to make life easier aren't choices promised one day and gone the next.

But in our case, because we need some funded support to realise them, they can be snatched from us.

Flexibility has always come with guidelines. It has never been, as the minister seems to be claiming, been unchecked.

We are not being pulled back to pre-Covid times as she claims we are asking disabled people and families to, at best, shrink their lives and, at worst, we are making their lives untenable.

In 2021, I spoke at the ministers' announcement of a new Disability Ministry we now call Whaikaha, along with a suite of other access changes,

I spoke about how increased flexible disability support managed by a ministry for and by us would change our horizons, allow us to imagine and pursue good lives, rather than "impossible trade offs".

I was hopeful about the future. This is not what that future looks like. This is a massive step backwards into the past. We cannot let it be.

*Henrietta Bollinger is a writer and disabled community advocate based in Te Whanganui a Tara, Wellington. Their first book Articulations was published in 2023 by Tender Press on disabled life.