Friday, 31 May 2024

Day 73 - Newsroom - Extra cash for Disability Ministry but cost pressures loom

Extra cash for Disability Ministry but cost pressures loom

An increase in funding for Whaikaha has been welcomed by the ministry, but with ever-rising demand for disability services it is unlikely to be enough

By: Emma Hatton

Newsroom: 31/05/2024


Disability Issues Minister Louise Upston has confirmed the Ministry of Disabled People Whaikaha will get an extra $1.1 billion until 2028. That’s on top of its baseline funding of just over $2.2b. Photo: Lynn Grieveson

The amount allocated to Whaikaha Ministry of Disabled People is 24 percent more than what it received last year, including $80 million before the Budget to see the department through an overspend.  

The ministry will get an extra $1.1 billion until 2028. That’s on top of its nominal baseline funding of just over $2.2b.  

Whaikaha (and Disability Support Services within Health before that) has regularly come up short on its appropriation.  

In the 2023 year it was $41.2m, in 2022 it was $31m and in 2020 it was short $103.7m. 

Minister for Disability Issues Louise Upston said the extra funding allocated in this year’s Budget would go toward support services, including support for people living in their own home, respite, residential care and the high and complex framework strategy.  

It is primarily to deal with the increase in people eligible for support and inflation.

NZ Disability Support Network chief executive Peter Reynolds described it as a “sticking plaster”.

“It allows the sector to stand still but not move forward. We’re grateful for the funding confirmed in today’s Budget but this is the bare minimum required and won’t extend support to more people in need or increase the quality of care.”

Whaikaha has confirmed the extra cash does not mean the guideline changes to flexible funding will be changed back, which limited what carers and disabled people could purchase with their needs-assessed budget.

An independent review is currently investigating how services might be delivered, and for what, in an effort to prevent regular overspends and cost pressures.

And while increases in volume and inflationary pressures are significant, the ministry faces a raft of cost pressures that remain unfunded. 

Widening the eligibility for who can access disability support services has been on the radar for some time.  

In early 2023, a briefing paper prepared for then-minister Priyanca Radhakrishnan mooted widening eligibility to those with fetal alcohol spectrum disorder. 

“Regular requests are also received asking for [disability support] eligibility for those with other neurodevelopmental conditions, particularly for access to carer support and respite services,” officials noted. This includes requests for ME/Chronic Fatigue Syndrome, Tourette’s, ADHD and Long Covid to be eligible.  

It was agreed that Whaikaha would scope a policy work programme to review widening eligibility. It’s unclear where this work has got to under the changed Government.  

Widening the scope of eligibility would add pressure to the current funding, something officials are aware of. This happened when autism became an eligible diagnosis.  

“This happened in 2014 and at the time additional funding was not sought to add this group. Numbers of people with autism who receive [disability support] has grown considerably, contributing to ongoing funding and service delivery pressures,” the briefing paper said.  

A question mark over widened eligibly compounds a question mark over a family carers claim going through the courts which could also see the ministry responsible for approximately 2500 new employees.  

Two family carers claiming they are employees of the ministry for the work they do were overturned by the Court of Appeal last month. They will be filing for leave to have the case re-heard by the Supreme Court.  

Another upcoming cost sits in the work Whaikaha is doing to shore up the High and Complex Framework – how intellectually disabled people who have committed a crime are treated. 

The current system is in crisis with ‘risk register’ documents released to Newsroom showing bed space has been in emergency mode for years. 


A report to Whaikaha from the Forensic Coordination Service shows a number of risks including an inability to provide bed space and complete assessments in the legislated timeframe are happening. Photo: Supplied/Whaikaka

The most recent intel available, which is for the three months to September 2023, describes how the secure service for youth had been closed for most of the quarter. Care coordinators relied on the Youth Court adjourning hearings, so as not to receive referrals.  

“However on three occasions, the Youth Court has declined requests for adjournment and proceed to make a care order. Care coordinators are left with no option but to designate these people to the [secure service] knowing full well that rehabilitation needs will be compromised due to the staffing shortages,” the briefing said.

It details how the secure service assessment bed has been unavailable in the Canterbury region for 18 months, referrals were being turned down by the Dunedin service due to staff shortages and there was no psychologist available for the region because their sole employee had resigned.

In Waikato the secure service was operating above its available capacity and the services in Auckland were at capacity. 

Whaikaha Specialist Services group manager Rachel Daysh, who has worked in the sector for years, said a combination of staffing shortages and infrastructure challenges which began some years ago has led to the current problems.

“This actually goes back to a combination of issues relating to the closure of institutions in New Zealand, where institutions were the training ground and the learning ground for a lot of health professionals and support staff who were working in the industry.  

“There’s a lot of training and support particularly around mental health professionals, but not formal training around people in the disability enterprise and so the system became quite dependent on people who were part of what I would call an ageing workforce, but they also became quite dependent on overseas supply.” 

The staffing shortages were compounded during the Covid-19 pandemic, although Daysh said in the past six months workforce issues had eased slightly, but the situation was by no means out of the woods. 

In 2021, Ombudsman Peter Boshier released his report into the High and Complex Framework. 

He found the Ministry of Health had failed in its duties.  

“Problems had built up over the years, especially capacity problems. The Ministry of Health didn’t do what was needed to address these problems, and stop them getting bigger,” Boshier said when he released the report. 

“This meant people needing framework services were not always able to be placed in suitable accommodation. In some cases, court proceedings were being deferred, and some people were spending longer in prison while waiting for a hospital placement.” 

When Whaikaha was established, the delivery responsibility of the framework fell to them, however the statutory obligations remained with Ministry of Health. 

Daysh said structurally the system was designed well but things fell short operationally.  

“One is a workforce capacity problem and the other is an ageing of fitness of infrastructure problem.” 

Both problems are addressed in Whaikaha’s recently released strategy to get the framework working properly.  

“The implementation plan will have different responses to the different sorts of issues. So some regions are simply at physical capacity and the system requires more beds to be built. 

“And they’re already being implemented now with Treasury to prepare programme business cases to build that infrastructure.” 

Exactly how much it will all cost is another question mark.  

Thursday, 30 May 2024

Day 72 - Facebook - 250 rally at Parliament

250 Rally at Parliament

By: Disabled People Against Cuts

Facebook: 30/05/2024

Contact: dpac.nz@gmail.com

Thank you SO much to the 250-strong crowd who turned up at Parliament today to rally with us against the restrictions imposed on disability support funding by the Government and to the many more who supported at a distance. ✊❤️

A big shout out to our MC Giovanni Tiso and wonderful speakers, including Priyanca Radhakrishnan MP, Nick Ruane, Kahurangi Carter, Inclusive Greens of Aotearoa New Zealand, Emily Writes, Jade Farrar, NZEI Te Riu Roa, Disabled Persons Assembly NZ - DPA, Etta Bollinger and Amy Taylor, and to For Futures’ Sake Choir for the waiata.

A huge thank you for Pōneke Anti-Fascist Coalition for their organising support and solidarity and Terangi Klever and Joe Boon for the amazing photos, as well as the many orgs who helped us with some logistics and to promote the rally including Public Service Association and ActionStation.

See y’all at the next one!

#DisabledPeopleAgainstCuts #NothingAboutUsWithoutUs #FlexibleFundingNow #ReverseTheCuts

Photos
















Last Updated 04/06/2024

RESOURCES


Day 72 - OneNews - Budget boost for struggling Disabled Peoples Ministry

Budget boost for struggling Disabled Peoples Ministry

1News: 30/5/2024

The coalition government has delivered a funding boost for the beleaguered Whaikaha – Ministry of Disabled People.

The 2024 Budget will provide an additional $1.1b over five years – including nearly $400m already committed for the rest of this financial year and for 2024/25.

The ministry has been under fire for what was seen as poorly communicated changes to support service access, as the ministry faced a shortfall.

The issues cost Penny Simmonds her position as the Disability Issues Minister.

“The coalition Government wants the best outcomes for the disability community, which is why we are prioritising the essential frontline services they rely on,” said Disability Issues Minister Louise Upston.

The minister said the “substantial investment” will allow eligible New Zealanders to access essential services, equipment and support they need.

That included home and community support services, respite care and community residential care, among other things.

“An independent review that is now underway into the disability support system will also help the Government improve the long-term financial sustainability of these services and ensure taxpayers are getting value,” Upston said.

“It’s important we provide disabled Kiwis with ongoing support that meets their needs and helps them lead a good life.”

The funding comes on top of maintaining the Government’s more than $2.2 billion per annum investment in disability support services.

Sector grateful - but funding the 'bare minimum'

NZ Disability Support Network chief executive Peter Reynolds said the funding would allow the sector to stand still but not move forward.

"We're grateful for the funding confirmed in today's budget — but this is the bare minimum required and won't extend support to more people in need or increase the quality of care.

"Providers face cost pressure across the board, with the prospect of covering unfunded Pay Equity wage increases hanging over them. Disabled New Zealanders deserve world class support, so all eyes are now on Minister Luxton's independent review to address the root cause."

Day 72 - NZ Herald - Budget 2024: Advocates say low income Kiwis, disabled people not prioritised

Budget 2024: Advocates say low income Kiwis, disabled people not prioritised

By: Katie Harris

NZ Herald: 30 May, 2024 07:08 PM

There are fears those already struggling to heat their homes and provide food for their children will fall deeper into poverty with advocates saying Budget 2024 provides “nothing” for low-income earners.

Included in today’s coalition Government Budget announcement was $14.7 billion dollars in tax cuts for income-earning Kiwis, amounting to about $12.50 a week for minimum wage-earning Kiwis and $25.50 a week for a single adult on $55,000.

Other initiatives include the Working for Families in-work tax credit, which is set to increase, giving 160,000 low and middle-income families with children up to $50 a fortnight and $478m for school lunches.

Christchurch disability advocate Nick Stoneman told the Herald just going to the supermarket was a scary experience for beneficiaries due to rising costs. Today’s announcement was a “Budget of nothing”.

“I see nothing in this Budget for those on low incomes, all I see is cuts. And we’re still going to be in the situation where we won’t be able to put food on the table.”

While $1.1 billion has been allocated over the next five years for Whaikaha, the Ministry for Disabled People, he didn’t believe it was enough.

“It’s not going to see Whaikaha out of the mess it’s currently in. It’s not going to provide the ongoing support that’s needed.”

Stoneman, who is on income support himself, said while there was a base level of help available, it was difficult to get individualised funding through Whaikaha.

“In terms of Ministry of Social Development and benefits, $78.6 a week for disability allowance isn’t enough. We need a meaningful increase, it’s got to be a minimum of at least $150 dollars a week.”

In his view, the Government’s priorities in the Budget were “all wrong”.

“It will continue to make life worse for those on income support payments with no meaningful increase and return to main benefits being tied to Cost Price Indexation we still won’t be able to put decent food in the trolley or afford the chocolate biscuits at the supermarket.”

Emily Phillips, an Auckland early childhood teacher currently receiving a benefit after being made redundant, felt those on low incomes and beneficiaries weren’t a priority for the Government.

Phillips said things were tight in her household and she was having to make tough decisions about whether she could afford to run heating for her whānau.

“It’s not a decision that anyone with sick kids should be making.

“Do I run the heat pump, do I not run the heat pump? Do I buy cheaper meals that don’t really meet the standard that I want my kids to be eating so that they can stay well?”


Auckland ECE teacher Emily Phillips. Photo / Veronica Jean Photography

She told the Herald she’s in situations where she has to decide between purchasing food or heating her home.

“I’m not an economist, I can’t make sense of the idea that we’re not prioritising as a country everyone having enough to eat and somewhere warm to live.

“To think about prioritising middle-income earners who may or may not be choosing whether to go on a holiday overseas or within New Zealand this year, versus people who are struggling to feed their children or heat their homes.”

While there have been large boosts for families who qualify for the ECE FamilyBoost programme, Phillips’ children were in primary school, and she was also forking out more in food costs as her kids were eating “three or four” times the amount they did as preschoolers.

Katie Harris is an Auckland-based journalist who covers social issues, media, crime and justice. She joined the Herald in 2020.

Wednesday, 29 May 2024

Day 71 - Newsroom - Effect of Govt cuts on disabled people ‘cruel’ – report

Effect of Govt cuts on disabled people ‘cruel’ – report

The disability community was shocked when Whaikaha announced sudden changes to flexible support funding. But those rollbacks are just the tip of the iceberg.

By: Laura Walters

Newroom: Wednesday 29/05/2024

A series of changes to disability supports have caught the nation's attention. Now a new report has quantified the cumulative effect of this Government's policies on people living with a disability. 

A collection of cuts and new policies across disability support, health, education and welfare are having a disproportionate and cumulative impact on some of the country’s most vulnerable people, according to a new report.

The report, shared exclusively with Newsroom, shows families that include someone with a disability may be paying up to $5500 more a year under this Government.

This was due to policies like the return of the prescription co-payment for some people, the increase in public transport fares, the decision not to lift the minimum wage as far as recommended by Ministry of Business, Innovation and Employment officials, and the changes to the free school lunches programme.

The report, A Thousand Cuts, published by social justice collective Fairer Future, models a range of scenarios based on typical families. The report finds each family is worse off under this Government than the previous administration.

A carer not in paid work (due to caring) whose children used public transport to get to school would incur higher costs of $63.23 per school week, and $2463.90 a year, under this Government, according to the report’s modelling;

A person whose disability was not recognised by existing disability settings, who needed prescription medicine and relied on public transport to get to work, incurred higher costs of $49.92 a week, or $2602.72 a year;

An Auckland sole parent on minimum wage who had a child with a disability and used public transport faced higher costs of $128.15 a week, and $5,742.88 a year;

A disabled person, who was not eligible for disability support and was on Jobseeker for those aged 20-24, faced higher costs of $176.43 or $703.89 a year (depending on whether they receive a disability concession card for public transport);

A disabled person who could only work part-time with flexible support, faced higher costs of $2.09 or $3.38 a week (depending on their age), or $109.17 or $176.43 a year.

“This assessment paints a picture of a cruel government directly responsible for greater distress in the lives of people, especially disabled people, in our community,” the report said.

While people with disabilities had long been forced to get by with inadequate funding and support, there had been some improvements in recent years – particularly in the form of more flexible funding models, it said.

But disabled people had the rug pulled out from under them when Whaikaha announced the changes to the flexible support framework, in March.

Along with the removal of flexibility and autonomy, decisions by the Government relating to welfare indexation, benefit sanctions, minimum wage rises, public transport costs, prescription co-payment fees, fair pay agreements and pay equity claims and free school lunches, were all having a cumulative impact, it said.

About 1.1 million people – or a quarter of the population – have a disability, according to the Ministry of Health. Meanwhile, 2021 data from Stats NZ found disabled children and children in households where someone is disabled are more likely to live in poverty.

Households that included someone with a disability were already struggling to make ends meet. This means that policies that impacted those already facing deprivation had a disproportionate impact on people with disabilities.

While the Government had promised a significant boost for frontline disability services in this week’s Budget, those in the community are worried things may get worse.

Disabled Persons Assembly chief executive Mojo Mathers told Newsroom that people in her community were feeling “overwhelmed, anxious, afraid about what else might be coming”.

“Some parts of our community are really, really distressed and others are just angry.”

Many were only just getting by, or had faced a lifetime of feeling under-valued, she said. But things felt worse now than they had before.

The announcement in March was like “a bolt out of the blue”, she said, adding that ahead of the Whaikaha announcement there had been genuine hope in the community.

While then-minister Penny Simmonds painted a picture of frivolous spending, with people using the flexible support model to pay for pedicures, haircuts and massages, Mathers said this funding model was essential.

Mathers said one person who responded to a recent DPA survey had ordered a new wheelchair when Whaikaha suddenly announced the funding changes. They were told to cancel the order, forcing them to continue using a wheelchair that was too small, and had given them pressure sores.

Others had similarly painful stories, including a solo mum, who was using the funding to keep her disabled child safe from their abusive father.

Meanwhile, children and families would no longer be able to access disability support programmes, like Riding for the Disabled or swimming lessons, during school hours due to the Government’s truancy policy. 

Mathers said it wasn’t just about disability-specific funding. When cuts were made elsewhere it put more pressure on the disability system.

“The more cuts are made in other parts of Government, the more precarious disabled people’s lives are.”

The report said not enough attention had been paid to how the impact of cuts could add up, and cause further distress to people simply trying to get on with their lives.

Fairer Future and ActionStation campaigner Max Harris said there was a powerful depth of feeling about the Government’s recent decisions.

“There’s real fear, insecurity, anger, and sometimes even hopelessness,” he said.

While the Whaikaha funding changes in March had caught the nation’s attention, it was important to understand the cumulative impacts, so the broader community would join the call to reverse Government policy.

The disability community was calling for the restoration of full funding and flexibility for Whaikaha, a change of course on benefit indexation so that benefits are tied to wage growth or inflation (whichever was higher), and an end to suppressing minimum wage growth, Harris said.

Fairer Future was also calling for an increase in income support, a wiping of debt owed to MSD, and an end to the Government’s recently re-introduced sanctions regime.

“With a recession being felt deeply, now’s the time to provide resources to those who are struggling – it’s not the time to hold resources back.”

Meanwhile, the disability community and advocates are also planning to protest at Parliament on Wednesday, in response to Whaikaha’s flexible funding cuts.

Newly appointed Disability Issues Minister Louise Upston said disability support services were one of the essential frontline services New Zealanders relied on, and the Government would give them a significant funding boost in Thursday’s Budget.

“The coalition Government wants the best outcomes for disabled people, their families, and those who care for them. It’s important they have ongoing support that meets their needs and helps them lead a good life,” she said.

Upston reiterated the Government’s position that Whaikaha’s changes to the flexible funding model did not constitute an actual funding cut, despite it limiting what funding people could access.

The Government recently increased funding for Whaikaha to see it through the remainder of the financial year, and had set up an independent review to examine what could be done to strengthen the long-term sustainability of disability support services, she said.

“It’s important the disabled community has certainty around the support services they can access, and taxpayers know they are getting value.”

Last Updated 30/05/2024

RESOURCES

Day 71 - NewsHub - More money promised for disability issues as protestor confronts minister outside Parliament

More money promised for disability issues as protestor confronts minister outside Parliament

By: Amelia Wade

Newshub: 29/05/2024


The disability community has been putting pressure on the Government. Credits: Newshub.

On Budget Eve, Minister for Disability Issues Louise Upston has been confronted outside Parliament by a protestor begging her to address the crowd about changes to disabled funding.

The woman accused Upston of ignoring protestors and challenged her about over why she didn't speak at the protest. Newshub has been told it was because the minister wasn't invited.

Upston later promised there would be more money for disability services in what will be a tight Budget with hundreds of cuts to government spending to pay for billions in tax cuts.

The disability community has been putting pressure on the Government to ease restrictions on flexible funding which allowed for more services and aides to be claimed by families.

Among the restrictions is a ban on claiming funding for any programmes for disabled children which run during school hours, like Teacher in the Paddock in the Bay of Plenty.

Founder Kevin Powell said even though the children weren't at school, they were still learning.

"We've had children who've come who've been non-verbal when they've arrived and after a time are fully conversational just through having that space without having the pressure to perform," he said.

He's disappointed in the move to block parents from getting funding to go to his programme.

"If what's out there now isn't meeting the needs, how does taking away what works continue to meet that needs. And it's not a big ask, it's not a big cost in the scheme of things."

The Ministry of Disabled People - Whaikaha - made the changes because it said the time during school hours are the responsibility of the education system.

IHC, which represents intellectually disabled New Zealanders, agrees with the Government's logic.

"Funding for what happens in schools comes out of vote education. This situation has occurred because of the inadequacy in funding and so families and schools have got creative," Trish Grant, IHC inclusive education lead, said.

"I'd love for the Budget to have increased funding for learning support."

Three ministers committed to giving more money to disability support and services on Wednesday.

Education Minister Erica Stanford said fixing learning support was one of her top priorities because she knew the system wasn't working, while Upston said disability services would see an increase in funding in the Budget tomorrow.

Minister of Finance Nicola Willis said the Government's focus wasn't on ministries and agencies.

"Our focus is on the frontline and for us that means schools, early childhood centres, tertiary providers and they can expect to see a funding uplift."

Willis made the commitment after showing off her Budget document at the Petone printers today - and acknowledged while the Budget's been put to bed, it hasn't had much beauty sleep.

"We've had a lot of budgets in recent years which have been style over substance, this one isn't about the slogans or the photos on the front, it's about the substance inside."

The minister coining her own slogan while slamming others.

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

Day 71 - Manawatu Guardian - Opinion - Palmerston North residents concerned about disability funding changes: MP Tangi Utikere

Palmerston North residents concerned about disability funding changes: MP Tangi Utikere

By: Tangi Utikere

Manawatu Guardian: 6 am, 29/05/2024


Palmerston North MP Tangi Utikere addresses a public meeting last Friday about changes to disability support funding. Also pictured is Labour’s disability issues spokeswoman Priyanca Radhakrishan.

Tangi Utikere is the MP for Palmerston North.

OPINION

The Labour Party believes the recent narrowing of disability funding effectively means carers can no longer access some services they have been able to access previously.

These cuts were communicated and implemented on the same day, without any consultation with those affected by these changes, and this has understandably left many disappointed.

Successive governments have worked hard to improve outcomes for disabled people in New Zealand, ensuring societal change through the Enabling Good Lives (EGL) approach, which was piloted in Palmerston North, by introducing flexible funding to support carers, and by setting up Whaikaha - Ministry of Disabled People.

Over the past few months, I have heard from a number of constituents from our disability community who feel incredibly let down. They are anxious that work that was under way to transform the disability support system in accordance with EGL principles will be stopped.

On Friday, I hosted a public meeting in Palmerston North with Labour’s disability issues spokeswoman, Priyanca Radhakrishnan, to listen to the concerns of those in our disability community who have been affected by these changes.

They are right to feel angry and upset, when they don’t know what the future holds for them if they lack flexibility and can not access services that were previously funded. As your local MP, I am committed to supporting our disability community, and advocating on their behalf for the assistance they and their carers need.

Last week was Road Safety Week, and it was a pleasure to visit two schools to acknowledge the mahi our young road patrollers do every day.

Safety around our schools is so important, and ensuring tamariki can arrive at and leave kura safely each day is a huge responsibility.

Whether it is raining, hailing, windy or brilliant sunshine, our road patrollers are out there doing their bit for their school and their community, so it was awesome to show them some support on the crossing, and surprise patrollers at one lucky school with a delicious morning tea to show my appreciation for the fabulous work they do throughout the year.

With the release of the Government’s Budget, I expect a number of new Government initiatives announced across a range of portfolio areas. As your local MP, I’ll continue to stand up for all Kiwis and keep a close eye on the Budget to make sure New Zealand, and Palmerston North, will not be going backwards as a result.

Tuesday, 28 May 2024

Day 70 - Waikato Times - Exhausted carer fears amid changes to disability funding

Exhausted carer fears amid changes to disability funding

By: Ke-Xin Li

Waikato Times: May 28, 2024


Helena Tuteao, pictured with dog Roxy, relies on others to drive her, especially for work with My Life My Voice. She’s now unsure if she can pay her carer to do that.

MARK TAYLOR / WAIKATO TIMES

Tighter rules around disability funding will leave people struggling for transport and time out, a Waikato group heard.

Many in the disability community found out through Facebook about changes to what respite funding can be spent on and were angered by suggestions from then Minister for Disability Issues Penny Simmonds that some wasted it on “massages, overseas travel, and pedicures”.

It was a “traumatic, confusing, and stressful” March 18 announcement from Whaikaha, the Ministry of Disabled People, according to Helena Tuteao, who is on the Waikato Leadership Group of Enabling Good Lives (EGL).

The EGL approach includes “trusting disabled people and families to flexibly manage their lives and funds”.

Tuteao isn’t reassured by moves the Government has made since the announcement, such as clarifying the changes, removing Simmonds from the disability portfolio, and appointing a panel to review ministry-administered support services.

None of the panellists have a known disability and a findings report is planned before consultation, she said.

People shared their frustration, confusion and concerns about exhausted carers at a recent meeting of about 30 disabled people and carers in Hamilton. Their thoughts will be sent, in anonymised form, to decision-makers, Tuteao said.

A mother who spoke at the meeting said EGL gave her some independence back - and her name, instead of always being her daughter’s mother.

Twice a week, a carer would look after her daughter and the mother would use respite time to work.

“That’s my place where I get to be an adult.”

She could associate with others and do “a range of different things.”

The mother also paid for a monthly massage for her daughter’s carer a using the funding.

“[My daughter] has very complex needs and loves her [carer], but the carer’s in her sixties, we are all falling apart.

“I think caring for the carers is something that has been completely missed out with these changes.”


Helena Tuteao said Enabling Good Lives (EGL) gave her independence. She is now on the Waikato Leadership Group.

MARK TAYLOR / WAIKATO TIMES

For Tuteao, transport is a big concern. She was diagnosed with glaucoma as a child and is now completely blind.

She relies on others to drive her, especially for work with My Life My Voice, which requires her to travel to Auckland and other cities.

Under the new rules, she’s not sure if she can still pay her carer to drive her.

When she had a partner, she also saw unpaid responsibilities placed on them: “Effectively they turned my partner into a bit of a disability support, which of course, changed the dynamics of the relationship as well”.

Disability lawyer Nan Jensen said it’s unfortunate that the government is treating disabled people like they can’t organise their own finances.

It would be difficult for her clients to challenge purchasing rules, she said.


Nan Jensen and Linda Terry at the Hamilton meeting to discuss future steps to make the group’s voices heard.

KE-XIN LI / WAIKATO TIMES

She and others recalled the case of Janine Albury-Thomson, who killed her daughter in 1997, saying she was exhausted after being unable to get respite care.

That prompted changes to respite funding.

And the inappropriate spending comments made by then-minister Penny Simmonds were disrespectful and untrue, Jensen said.

She didn’t see how anyone could be spending wastefully given she was once followed up after refunding herself when she’d accidentally paid her son’s carer from her personal bank account.

Family representative on the Enabling Good Lives (EGL) leadership group Linda Terry said the announcement “diminished that trust that we have built up” in one fell swoop.

-Waikato Times

Day 70 - DUNZ - Website Upgrade

DUNZ Website Upgrade

The existing website is very popular, has 200 web pages, and is becoming difficult to manage. A new version of the DUNZ website will strengthen disabled people's campaigns to defend human rights. It will enable DUNZ members to log in and contribute information, make donations, access resources, and use campaign tools. This will share the workload. It will be 100% free to use.

It will use a content management system driven by a database, be laid out differently, and integrate with Zoom, maps, mailing lists, and other third-party web tools.

All the existing items and web URLs will stay the same. Some layout options will be available for members to review and discuss in a few weeks.

Last Updated 28/05/2024

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Monday, 27 May 2024

Day 69 - Timaru Herald - Disability advocate Olive Webb has Timaru audience enthralled

Disability advocate Olive Webb has Timaru audience enthralled

By: Rachael Comer

Timaru Herald: 7pm, May 27, 2024


Dr Olive Webb, left, chats with Erin McNaught at the Aoraki Foundation's Women's Fund luncheon in Timaru on Friday. Webb was a guest speaker at the event.

JOHN BISSET / THE TIMARU HERALD

A voice for people who may not otherwise have one, Dr Olive Webb was a compelling speaker at an event in Timaru last week.

The clinical psychologist, 77, who was nominated in the local hero category of the Kiwibank New Zealander of the Year Awards earlier this year, was the guest of honour at an Aoraki Foundation Women’s Fund event on Friday.

There was barely a whisper from the audience at the West End Hall as Webb spoke about her own life, people with disabilities and the need to treat others well and with respect.

But before she took to the stage, there was also an update from those in South Canterbury making a difference.

Speaking on behalf of Presbyterian Support South Canterbury Family Works, general manager Deidre Dahlberg and counsellor Julie Smart told the crowd of more than 70 women that money given to the organisation through the fund had allowed it to run two eight-week women’s counselling courses.

Another was being organised, she said.

“Poverty is a real issue for lots of the clients, and it was important to be able to run these workshops,” Smart said.

“The courses enabled women to get together in a safe environment and be supported.”


Members of the 70-strong audience at the Women’s Fund event.

JOHN BISSET / THE TIMARU HERALD

Women’s Fund committee member Jan Hide said the courses were a great example of what the organisation could do for the community.

She said it was the aim of the fund to raise $50,000.

“So far we are lucky enough to have raised just over $30,000.”

The fund was launched in 2019, but then Covid-19 struck. It was relaunched in March last year.

Webb told the audience that when she agreed to speak at the event, she had not realised it would be a reunion of sorts, explaining that she had seen and spoken to many in the hall whom she had met through her 50 years of working with people with disabilities.

“Whenever you think about disability, you come back to power,” she said.

“I remember once going to Ian Evans [professor emeritus of psychology, Massey University], and he said: Imagine the difference if you go to the door to see somebody who lives in a home for people with disabilities and ask for ‘Bill’. And instead of someone saying, ‘He’s in his room,’ they say, ‘I’ll see if he’s free.’

“When you walk into those places [a home for people with disabilites], power and how it is used become an issue.”


At the luncheon are, from left, Deidre Dahlberg, Lynda Hunter, Anne Fenwick and Andrea Clegg.

JOHN BISSET / THE TIMARU HERALD

Webb began working at Christchurch’s Sunnyside Hospital in 1970 as an assistant clinical psychologist. At the time it had about 1300 patients.

She was there for 24 years and specialised in working with people who have intellectual disabilities, and people who have autism.

In 2022, Webb gave evidence to the Royal Commission of Inquiry into Abuse in Care, and last year she wrote a book titled From Behind Closed Doors: My Journey Alongside People with Intellectual Disabilities.

Webb was the longest-serving board member on the Canterbury District Health Board, and in 2008 she was made an officer of the New Zealand Order of Merit for services to people with intellectual disabilities.

It was important that people with disabilities were treated as individuals, she told those at the luncheon.

“If someone refers to individuals as ‘them’, take them off your Christmas card list.”

- The Timaru Herald

Day 69 - Manawatu Standard - ‘This has become very real’: Disability cuts devastate sector

This has become very real’: Disability cuts devastate sector

By: Alecia Rousseau

Manawatu Standard: 3:00pm, May 27, 2024


Tangi Utikere, left, and Priyanca Radhakrishan told the crowd they were doing all they could to help the disabled community.
ADELE RYCROFT / MANAWATŪ STANDARD

The Government’s cuts to disability services have left people desperate, frustrated and unable to access care, a meeting has heard.
A full house packed into the Community Leisure Centre in Palmerston North on Friday to hear from Labour’s Minister for Disability Issues Priyanca Radhakrishnan and MP Tangi Utikere.

The pair told the crowd they were aware of the devastating impact the changes to flexible funding had on people and said they were doing their best to challenge Whaikaha, the Ministry of Disabled People, on its decision.

The ministry announced in March it was changing purchasing rules for disabled people and their carers effective immediately.

This happened without consultation and was announced via Facebook.


People told the public meeting there is too much uncertainty and they are reaching breaking point.
ADELE RYCROFT / MANAWATŪ STANDARD

Since then, the ministry had provided clarifications to what it says are “temporary” rules that impact things such as the purchasing of sensory items, respite care and the ability to use funding during school hours.
But Radhakrishnan said the “hurt and damage” was already done and families were reeling from the decision to take away their flexibility.

It also went against the approach of Enabling Good Lives, something that was mandated when National was previously in power.

Families had told her they were unable to pay carers to accompany them on trips or for therapy their children needed.

One woman’s story in particular stuck with Radhakrishnan.

A youth leader in Auckland had been unable to attend a gathering at Parliament because she could not take a support person with her.
Many who did go “couldn't access food, water or toilets”, she said.
The ministry had now ”walked that [restriction] back a bit” and anyone claiming those services prior to March 18 could continue doing so.

“There is a strong sense that people are just exhausted and at breaking point and this is almost pushing people over the edge frankly.”

The Minister for Disability Issues at the time, Penny Simmonds, who had since been replaced with Louise Upston, said the changes were because of financial pressures.


Pip Brunn, who is on the regional leadership group for Enabling Good Lives, says people are not getting access to the funding they’ve gone through huge processes to get.
ADELE RYCROFT / MANAWATŪ STANDARD

But Radhakrishnan said the Government should have topped up the funding, and there was a “timeline of inaction”.

“She [Simmonds] knew in December, signed a briefing on March 14 for these changes that were then announced on March 18.

“I think she dropped the ball on this and that's probably reflected in her losing her portfolio.”

Flexibility was introduced by Labour in 2022 and that saw demand increase because a number of people previously unable to access funding could now do so, she said.

“When you bring in flexibility, you then start to get the true measure or gauge of need.”

Toni ‘Ants’ Burgess told the crowd a flexible approach from Enabling Good Lives had helped her out of a wheelchair and off crutches.


Radhakrishan says the changes have impacted many people and all in different ways.
ADELE RYCROFT / MANAWATŪ STANDARD

She had gained independence and completed half-marathons, but her next four events were canned because she could no longer “koha” or pay a support person to accompany her.

She said there had been no consideration of the risk when making the changes, especially for those who were suicidal or suffering from mental health issues.

“The real life impact of this has become very very real in our city this week.”
She worked in the disability abuse sector and said they were seeing “more and more” people struggling with the ministry’s decisions.

“If people aren’t supported properly they are going to go through what I did in 2019 when I had a massive breakdown because they are not supported properly.”


The public meeting allowed disabled people to share the personal impact the chnages had on their lives.
ADELE RYCROFT / MANAWATŪ STANDARD

She “could not believe” some of the restrictions placed on whānau and their supporters.

“It’s absolutely insane. I spoke to Oranga Tamariki last year and we all know supported families are safe families.

“Here in MidCentral we had the least uplifts of disabled kids during lockdown, we know what works.”

Pip Brunn, who was on the regional leadership group for Enabling Good Lives, said people were not getting access to the funding they’d gone through “huge processes” to get.

“They’ve had to share their whole entire lives, they’ve had to justify why they should be able to leave their home.

“They’ve had to go through all of these things just to get the support they need just to survive [and] to be able to wake up the next day.”

Utikere said one thing he was hearing was the new rules “fly in the face” of Enabling Good Lives, which was about giving people greater choice and control over their lives.

“There's a fair bit of anxiety that this means that the pathway of the trajectory that we were on, which was to extend Enabling Good Lives, has now been derailed.”

Whaikaha has since admitted it had “a lot to learn” from the way it made the “confusing” announcement, and said it was committed to working with those in the sector.

An independent review into the disability support system was also under way and Upston said this was to strengthen its long-term sustainability.

- Manawatu Standard

Last Updated 27/05/2024

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Sunday, 26 May 2024

Day 68 - Auckland protest in the rain today - over 100 people

Auckland protest in the rain today - over 100 people

By: Nicola Owen and Melissa Peterson

Facebook: Sunday, 26 May 2024

There was a great disability rights protest in Auckland today despite the rain. Photos show a crowd of around 100 people with union flags and protest signs.






Paul Brown from Blind Citizens and DPACA at the Auckland protest on Sunday 26th May.


Danni from PSA at the Auckland protest on Sunday 26th.


Last Updated 28/05/2024

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