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 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.  

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

• Fairer Future

• A Thousand Cuts (PDF)

• Press Release on Scoop

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

Govt launches independent review into disability support services

By: 1News Reporters

TVNZ: 30 April, 2024, 12:28pm

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

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

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

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

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

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

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

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

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

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

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

The review will look at:

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

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

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

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

• The legal framework for Disability Support Services.

• Stakeholder relationships.

Disability support providers welcome review

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cabinet has agreed that the panel will consider: 

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

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

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

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

• The legal framework for Disability Support Services.

• Stakeholder relationships.

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

Disability ministry’s problems revealed in confidential memo

By: Isaac Davison

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Last Updated 30/04/2024

RESOURCES

• Confidential Memo (PDF)

Day 40 - RNZ - Public service cuts: Ministry accused of stealth job losses

Public service cuts: Ministry accused of stealth job losses

By: Jemima Huston, Reporter

@jemimahuston jemima.huston@rnz.co.nz

RNZ: 9:18 pm on 29 April 2024 

Ministry of Disabled People employees were promised a permanent role, but were told to start packing three weeks before their fixed term contract finished, says a former employee.

The Ministry - also known as Whaikaha - told RNZ it had no plans for redundancies as part of the government's cost-saving requirements.

But the employee said they started in a fixed-term role last year and they were promised a permanent contract as soon as the paperwork was filled out.

"This position was initially planned to be a permanent position, so I really wasn't expecting not to be extended or not to be made permanent.

"So I think what our ministry is doing is they're just sort of quietly not extending all the fixed-termers and that way they can say: 'Oh, we're not disestablishing roles'. But they actually are because they're not replacing us."

They said it was a shock to be told there would be no extension, just three weeks out from the end of the fixed-term contract.

"I was getting a little bit worried, because I wasn't hearing anything about being made permanent or being extended. And so yeah, about maybe three and a half weeks before the end of the fixed-term, they said: 'Oh, we're actually not extending you'."

The worker said the job market was dire and they had been forced to lower their salary expectation.

"I have a mortgage to pay, so I'm obviously quite stressed about finances. I have found that there's not that many jobs out there. I've applied for so, so many, and I've gotten a lot of rejections."

Public Service Association assistant secretary Fleur Fitzsimmons said the cuts to fixed term staff showed there were more job losses in the public sector than was being reported.

She said workers that were told they would be made permanent may well be able to argue that the promise stood.

"In New Zealand, an employer must have genuine reasons based on reasonable grounds to make someone fixed term.

"If workers have been told that they'll be made permanent, they can rely on that and elect to be treated permanent."

Fitzsimmons said any public servants who had been promised permanent roles or have had changes made to their fixed term contract should contact the PSA.

"In many cases it may be that these fixed terms are not genuine and that these people do have grounds for personal grievance, and I'd strongly encourage them to get in touch with the union so we can provide representation and support."

The Ministry of Disabled People said it employed 37 fixed-term, 211 permanent, and 6 secondee staff as of 20 April.

Deputy chief executive of corporate services Hayley Evans said the number of fixed term employees will gradually get smaller over time.

"Fixed term or temporary appointments are made for reasons that are specific to the work they are hired to do. Given the phase of establishment that Whaikaha is in, we expect to gradually reduce our reliance on temporary staffing arrangements."

Evans said there were still no plans for redundancies at Whaikaha because it was already a small ministry.

She said in response to the government's savings targets the ministry had not recruited for some unfilled roles.

Last Updated 30/04/2024

RESOURCES

• PSA

Day 37 - The D*List - The hidden detail in this week’s update to funding rules

The hidden detail in this week’s update to funding rules

By Red Nicholson

The D*List: Friday, 26 April 2024

A recent change saw Whaikaha restoring flexible funding for some - but not others. Did you have a plan lined up before 18th of March? You're all set. After that? You're out of luck.

OPINION: This week, Whaikaha - the Ministry of Disabled People released yet another update to the purchasing restrictions recently imposed on people who receive flexible support funding. While this recent announcement restores degrees of flexibility for some people, it continues to leave others out in the dark. 

We know there has always been an invisible asterisk that sat alongside the phrase 'flexible funding'. Flexible, sure, but only sort of. Or flexible within particular boundaries. Alcohol and gambling, for example, have always been excluded. But the changes first announced on March 18 and the clarifications since represent the largest existential risk to the pipe-dream of flexible support funding that truly Enables Good Lives. 

As Whaikaha - and the Government - soon discovered after announcing the initial set of changes, introducing strict rules to what had previously been a flexible system only led to more complexity, confusion and uncertainty. Setting one rule meant making clarifications to another. Limiting one set of purchases all of a sudden meant disabled people couldn’t travel. Or get to work. Or honour their employment agreements with their staff. So as issues arose, the clarifications rolled on, attempting to mitigate various violations of human rights and employment law.

Because our lives – well, they’re complicated. We often talk about disability not being a homogenous experience, so flexibility is critical to ensuring disabled people can live the lives we want. Having rules, limitations and exclusions arbitrarily and immediately imposed upon us by policymakers had a substantial impact on our lives, and was deeply upsetting for many in our communities and our whānau.

Photo credit: Olivia Shivas

A group of disabled and nondisabled people protest, with a man speaking into a megaphone in front of the crowd. A cardboard sign reads: Good lives disabled by Penny's lies.  Another sign reads: Carers care, do you?

Since the changes to flexibility were first announced, shades of grey have been introduced week by week, each weekly update providing additional clarification – but very little relief.

However, the latest update announced this Wednesday introduces a new red line that means many will be disadvantaged through no fault of their own. The update dated 24 April states: “existing support arrangements can continue [so long as] … that commitment was made before 18 March 2024”. Further reading on the Whaikaha website reveals that “existing support arrangements” means that some disabled people will be able to use their funding just as flexibly as they could before, including paying for:

• “expenses that are a necessary part of supporting the disabled person, and 

• travel-related costs of support workers (accommodation, transport, meal allowances) can continue to be paid where those costs are incurred as part of supporting the disabled person when they engage in domestic travel (including between cities and regions) for work.”

This is a big deal – limiting the ability for disabled people to pay for support workers’ travel had a material and profound impact on many of our opportunities for employment, recreation and social activities. So it’s great to have this flexibility restored. But - bizarrely - this exemption is only available to those who had an existing arrangement for work, study or therapy in place prior to March 18, 2024. 

Did you start a new job on the March 17 and need to pay a support worker’s travel costs? No worries. Start on March 19? You’re out of luck. Did you sign up to a programme in February that requires you to make disability related purchases to attend? Great, use your funding! Oh, you signed up on March 19? Sorry - pay those costs yourself. Two people who begin the same study, employment or therapeutic journey two days apart will have access to vastly different levels and conditions of support. 

Whaikaha are very clear about this: “Your flexible funding cannot be used to support you to participate in any new course of study that you had not committed to before 18 March 2024,” reads their website. This arbitrary distinction makes absolutely no sense at all, and only serves to further confuse and divide our communities. 

The question must be asked: Why carve us out like this? Why make it so difficult to access the tools we need to survive? As we know, the more complex a system is to navigate, the less likely people are to engage. This leaves those that will benefit the most as the people with the most privilege. The people used to working within systems that have historically been designed to meet their needs. And the people who know the conversations to have with people inside the system to get what they need. 

The question must be asked: why carve us out like this? Why make it so difficult to access the tools we need to survive?

So yes, this is a disability rights issue. We must continue to speak up against systems, processes and policies that reduce the scope of our lives and reduce us to passive recipients of support done to us, rather than designed by us. But this is also an equity issue. Government agencies continue to impose unwieldy and hostile eligibility criteria that only serves to entrench existing layers of privilege and inequity. What we’ve seen from the Government over the past month does nothing to address these issues, and in fact, by continuing to introduce needless complexity and senseless exclusions, we further entrench the very social inequities that our Ministry was set up to challenge. 

Let’s cancel the clarifications, and return true flexibility, agency and self-determination for disabled people and our whānau. 

Last Updated 26/04/2024

RESOURCES

• https://www.whaikaha.govt.nz/assets/Purchasing-Guidelines/24-April-2024/Clarifications-to-the-Purchase-Rules-24-April-2024.pdf

Day 34 - Disabled ministry gives new 'clarifications' on purchasing rules

Disabled ministry gives new 'clarifications' on purchasing rules

By: TVNZ Reporters

One News: 24 April 2024

Whaikaha Ministry for Disabled people has provided "clarifications" on purchasing rules for flexible funding support following feedback from both the community and providers.

Last month, Whaikaha announced it would place new rules on funding for equipment, modification support and services due to financial pressure.

The enforced budget caps and reductions in orders were "not cuts", the Government said, adding that funding for the ministry would be topped up in this year's Budget.

The plan was revealed through a leak which was reported in Stuff, with disabled New Zealanders and those that care for them speaking of being "blindsided" by the changes.

Whaikaha's chief executive later apologised by the stress caused by the changes and the way it was announced, and Minister for Disability Issues Penny Simmonds said the department hadn't been clear enough with its communication.

At the time of the announcement, Simmonds said criticism of a funding cap for equipment for disabled people is "absolute rubbish" — and revealed her ministry was within “days” of running out of its funding.

She later caused controversy when she claimed carers had been taking advantage of a "broad" funding criteria to use public money "for massages, overseas travel, pedicures, haircuts" for themselves.

Finance Minister Nicola Willis said future decisions by the ministry about funding would go to Cabinet to be signed off.

Today, the ministry outlined new clarifications on how people can use some of the disability funding.

The ministry's new clarifications are as follows:

1. Ride and driver services can be used to support a disabled person to access services or engage with the community, where this is a reasonable and cost-effective option.

2. The following items can be purchased for a disabled person to assist self management, on a one-off basis within a flexible funding allocation period:

• Electronic tablet devices

• Noise cancelling headphones

• Sensory toys, fidget spinners etc

• Weighted blanket

3. Household support arrangements in place through Choice in Community Living or a personal budget can continue, where these arrangements are an alternative to residential care that enables people to live in the community.

4. Existing support arrangements can continue where:

The disabled person has committed to employment, a course of Study, therapy, or a timebound programme; and

They have relied on the availability of flexibility under the previous Purchase Rules to support them to participate in those commitments; and

That commitment was made before 18 March 2024.

Carers respite accommodation a 'reasonable expense' - Autism NZ

Autism NZ said being able to carer support and individualised funding for sensory items, tablets and noise cancelling headphones would come as a "great relief" to many people living with autism.

However, it was disappointed the update did not contain changes "to the inability for carers to pay for accommodation to take a break".

"Many autistic people cannot tolerate residential care services, or leaving their home for respite.

"So carers must be able to leave the home to avoid burnout or overwhelm, and the cost of a night in a domestic hotel is, in Autism NZ's opinion, a reasonable expense for someone providing millions of dollars for unpaid labour across a lifetime."

'A lot to learn'

In today's announcement, Whakaha said it had "a lot to learn" about the way it communicated the initial changes.

"We acknowledge the changes have been distressing and caused confusion for the community, and for the service providers who support disabled people.

"We are committed to our partnership approach and the transformation of the disability support system."

Last Updated 28/04/2024

RESOURCES

• https://www.1news.co.nz/2024/04/24/disabled-ministry-gives-new-clarifications-on-purchasing-rules/

• https://www.whaikaha.govt.nz/assets/Purchasing-Guidelines/24-April-2024/Clarifications-to-the-Purchase-Rules-24-April-2024.pdf

Day 28 - Tracy Peters - Letters to Whaikaha

Letters to Whaikaha

By Tracy Peters

Email: 17 April 2024

-----------------------------------
17 April 2024,12:15
-----------------------------------

Hello Whaikaha,

if I had a choice I would send this email directly to Paula (can't spell her last name) but I suspect Paula's email account is off-limits to us minions.

So I'll write this email and hope that whoever reads it considers why I am so confused and frustrated and maybe a miracle will happen and I'll get a response that makes sense and refers to the content of this email...(one can but hope) and if I'm really fortunate I might actually get a real and practical solution...(Ok so that might be expecting too much, but one can but hope)

Like many others who make contact with you, I get IF...at least I did, well I can see my funding allocation, it's there I just can't use it! So I'm assuming I still get funding...Um maybe???

So I rang my NASC with some questions, my NASC advised me to call Whaikaha who advised me to call Manawanui who advised me to call Whaikaha...who advised me to call my NASC....(Confused yet?)

But wait there's more! (and no it's not a TV Ad) I called Whaikaha again....(because I simply can't resist trying again, and again and well you get it)

I finally got a lady at Whaikaha who declined to give me a name, but at least she took the time to speak with me. I really did not enjoy the conversation. It felt very much like a Monty Python Skit and it's only funny if you're not the brunt of the Joke.

I was asking about still being able to use an approved travel service "Freedom" in Invercargill to attend medical appointments in Invercargill including a mammogram appointment as I'm in the age group who gets free Breast Screening. (really it's free for breast screening....for now anyway) 

Can you comprehend my perplexity at the response I got.

WHAIKAHA - "Why do I need a mammogram? and do I have permission to have a mammogram? As I'm disabled should I be getting a mammogram?"

And "Why do I need to attend medical appointments and do I have permission? Why do I need to use a driver service?" Being disabled do I need these appointments?

ME - Well, I'm 58, and all NZ women from about the age of 49 are eligible for free Breast Screening and just because I rock a wheelchair does not exclude me and I rock a wheelchair and need to use a driver service to get to and from appointments and whose permission do I need and why???????

Why am I even having this conversation???????

Oh but wait there's more!!!

Whaikaha needed to contemplate their....I don't know what, but Whaikaha graciously agreed I could use my approved Travel Service to attend appointments...but I must ensure I had permission to have these appointments.....(Eh what and why and just WHAT)

I had more questions but had to take some time out to have a cup of tea (no I didn't ask anyone permission to have a cup of tea!!!)

Due to my spinal injury and Yey I got a freebie thrown in Spinal Myelitis, I need medication that is not available on prescription Metamucil Capsules. The free-flow powder is available on prescription but I need the capsules and they are not available on prescription....so I was advised to use my funding to pay for the capsules which I can't get on prescription....a bottle of 300 capsules from Chemist Warehouse is $74.99 no way I can afford that, but if I could get it on my funding then great.

WHAIKAHA - "How would having these capsules help? and Why do I need them and can't I just use something else and I should investigate other options and do I have permission to use them?? and I should just eat prunes and can't I just put up with it, I'm disabled.

ME - " Yes I am disabled, Due to the spinal injury and complications due to a lack of prompt medical care, my bowels don't work. I either suffer severe constipation or severe diarrhea, and my bladder is also affected. I need medical treatment that is not available in Invercargill as Invercargill does not have a Spinal Unit and I can't get to Burwood unless I move to Christchurch....so I'm on long-term medication, such as Coloxyl with Senna (which has turned toxic in my system, but I can't stop taking it until I get medical treatment, and that would be a bowel resection and a BAG for POOP) I'm also supposed to take at the direction of the doctors Metamucil Capsules which are not available on prescription and what do you mean do I have permission and whose permission do I need and why????

Explore other options? such as? Oh yeah I've had very long involved conversations with doctors, and the consensus is I need treatment as in an operation....only I live in Invercargill and the treatment I need is not available here in Invercargill....no I can't put up with constipation it can kill and just because I am disabled does not mean my life has less value...

WHAIKAHA - "Call your NASC or Manawanui...if they agree I could try claiming it, does it mean incontinence???? Can't I do without? 

Permission from my caregivers?

ME - YES it means incontinence and No I can't do without! I'm an adult a very frustrated exasperated , well-educated, usually reasonable adult who has just developed an odd facial twitch...I'm capable of making my own decisions and I do not need or require someone else making decisions for me nor do I need anyone's "permission" to live my life. Such a suggestion is offensive, inappropriate and unprofessional, discriminatory and shows prejudice and a lack of comprehension and understanding. And Whaikaha need to address empathy training in all their staff....

WHAIKAHA - Well you could talk to your host.

ME - speaking of Carer Support/Personal Care. I have two people on contract, one works with my fabulous husband who is also on IF and one works with me.....What's the status of their contracts??

WHAIKAHA - My contract with my support person is void as of 18 March and with the funding changes, there is no certainty I can employ anyone. But not to worry, the fabulous husband's support person and contract is ok....maybe, I'll need to get clarification, but from whom I'm not sure...(Maybe Monty Python might know)

ME - I'm confused, very exasperated, and that facial twitch won't stop and I'm so frustrated....might even be stressed. I'm not certain about what can and cannot be under the Guidelines which are truly a work of artistic interpretation. (Monty Python has a lot to answer for) Or is that Shakespeare, to be or not to be, that is the question, (It's a philosophical debate, me, I just want practical solutions and answers, stuff the debate!)

It's time for me to be radical and go make a cup of tea without asking anyone else's permission or debate...

Before I do, think about this, disability is a fact, it can and does happen at random to anyone at any time. And just because a person is disabled does not make them less. What makes a person less is attitude! I did not shop for a disability, it's not something I can return because I don't want it anymore, I'm not ashamed of being disabled and no I would not change who I am as I'm proud of being disabled.

Being disabled, I need support, I was granted support, I used my funding with respect and appreciation and responsibility and then 18 March came along and now I have no idea what can or cannot be....your guidelines state one thing but reality does not match.

Tracy Peters....pretty sure the facial twitch is either stress caused by Whaikaha a lack of chocolate or both.....

-----------------------------------
17 April 2024,13:47
-----------------------------------

Hello Whaikaha,

I'm emailing with feedback once more as I have made another discovery about another negative effect of the IF Funding debacle of March 18.

Me, I'm a mature woman in a wheelchair, with Spinal Injuries on IF. (am also Dyslexic and slightly Autistic and have a brain tumor)

IF has been a huge benefit to me, my family, and by extension my community, as I have been thanks to IF able to contribute to my community as a Disability Advocate, (not paid)

IF allowed me to undertake rehab, by purchasing a gym membership so I could attend the YMCA Gym in Invercargill. 

There is no spinal rehabilitation in Invercargill, no Physios or therapists who have the skills and capability to work with me. So I had to come up with my own plan with the guidance of my Spinal Injury Peers.

By going to the Gym each day I could work on muscle development, strength and core exercises and fitness. Rowing a manual wheelchair is hard work. (If you've never tried it, go borrow or hire a wheelchair and row yourself around your city for a week and then you'll better appreciate what I'm trying to explain)

There are no staff at the gym who can work with me as they aren't trained in spinal rehab. But I am part of the Spinal Peer Support Network and my peers provide support and guidance.

And because I suffer severe spinal spasms and a shoulder misalignment I was also getting Massage Therapy with an experienced spinal massage therapist privately who lives in Invercargill as there was no one available in the Public Sector in Invercargill with the skills and experience I need. 

Stephanie, my private massage therapist came to my home as I could not get to her. For $85.00 a treatment Stephanie would come to my home and provide massage therapy which was a huge help.

The massage therapy reduced the pain, eased the stressed spinal cord and made it possible for me to go out in my manual wheelchair and take part in activities like grocery shopping, visit the library, meet friends and peers, and be physically and mentally healthier. I could stand upright at the kitchen bench for a few minutes, I could transfer dishes from my bench to the oven, pots from the cooker to the bench, simple tasks others might take for granted if you don't have a spinal injury.

Massage therapy and Gym workouts made transferring from my wheelchair safer and easier for me and my support team. 

I could also hang out my laundry on the clothesline, I could lift the kettle without dropping it. 

Massage Therapy meant I could manage household tasks better such as cooking, I really enjoy cooking for my family, and friends.  I even enjoy doing the dishes, because it was something I could do, I could contribute to my family. Massage therapy and going to the gym meant I could be more independent and rely on my carer support less, I still needed them but not as intensely.

But then March 18 happened and I can no longer go to the Gym. I can no longer maintain my physical rehab and I can no longer have my massage therapy so I am more reliant on carer support. (And there's another issue as March 18 voided her contract, so thanks for that)

I will need more medical appointments, I find it more difficult to undertake grocery shopping and social activities.

My bowl and bladder are less healthy I need more medication...(Yeah wrote you an email about that conversation with one of the Whaikaha staff) I'll need more medical intervention because my bowl has totally failed because I can't go to the Gym anymore and can't get the massage therapy for my spinal injury...I'm crankier as I sleep less due to pain...(the local hooligans do not thank you for my crankiness, they now live in fear of the crazy wheelchair lady)

Now let's talk about my husband, he has Asperger's and EDS Ehlers-Danlos Syndrome, a connective tissue disorder and Synesthesia and some other stuff. He's high functioning, funny, kind, well educated and disabled.

The husband was allowed to use some of his IF to go to the YMCA Gym every day, (At a different time to me) it made a huge difference for him as again there is no one in Invercargill at the DHB with the skills and knowledge to help him, so we turned to the EDSNZ support network and the one doctor we could find who is based in New York who gave a seminar online.

The Gym has made so much difference, the husband is fitter, happier able to move easier, has made social connections, has fewer injuries, and sleeps better.

And then March 18 happened and neither of us can go to the Gym anymore.

If we weren't disabled we wouldn't join a Gym. We'd rather be outdoors getting our exercise, if I weren't disabled I wouldn't need a spinal massage for spinal spasms. 

If I weren't disabled I wouldn't be in a wheelchair rowing everywhere and thereby putting immense stress on my upper body and muscular-skeletal system....

I am disabled, I need to use a Gym to stay healthy because I am in a wheelchair and I need massage therapy because I am disabled with spinal injuries gained through accidents which are not covered by ACC as my first injury happened before 01 April 1974.

 We are disabled and we're proud of who we are, we'll never be ashamed of being disabled, the support we need is reasonable, we do contribute to our community, we pay taxes, we have value as human beings. We have always used our IF responsibly and respectfully.

I would really like our funding reinstated, as would all those affected.

Tracy

-----------------------------------
17 April 2024, 16:03
-----------------------------------

Hello Whaikaha,

Do you know what the difference is between acute services and disability needs?

Here's how it works for me a disabled woman and many of my peers.

I suffered an injury, was taken by ambulance to the hospital where I was assessed, admitted, and treated with surgery, given in-hospital physio, x-rays, scans, meds, OT, and then discharged. (I'm seriously summarising here)

My discharge summary included - permanently disabled.

I was promptly discharged from the DHB services with a permanent disability, no outpatient follow-ups for me, nope. Permanently disabled means they can't fix me, cure me or make me new again. (I'm ok with that), being disabled equates to being cut adrift and left to figure it out yourself (no so ok with that)

Hospital services are designed for acute treatment, break a leg for example, get it treated, do your physio, get back on your feet, get on with your life.  You get discharged from outpatients and go your merry way. Your healed leg might twinge a bit every now and then, but you can ride a bike, go for a walk, or drive your car. Go dancing with your partner...enjoy sports etc.

A permanent disability is different, upon discharge from the hospital and outpatients your life takes a very different track.

There is no follow-up with the doctor at the hospital, there is no outpatient referral to physio at the hospital. (I was referred to hospital outpatients physio and declined because my injury was permanent and they only treat acute injuries and limited resources meant they had to triage based on who would best gain from their services. the Physios didn't see any benefit in treating the woman in the wheelchair despite the fact treatment would help me long term. But DHB's don't do it long-term.)

Disabled - If you're lucky you get referred to a NASC who does an assessment and you get IF and with that your life takes a very different track. The support you need might include, help in the house with housework, maybe you need someone to come in and help with getting you out of bed, and bathing. You might have tech like a wheelchair, maybe you've lost a limb or two or three. (Earthquakes are so pesky like that)  Maybe you've had a head injury...

My point is that hospitals and their services are designed for acute patients, you go in, get treated, get discharged, and get on with your life. The DHB's understand this model, it's how they operate.

Disabled people need a different model. Our needs are all different, no two people are the same and this is where it gets hairy. Our situations are long-term, life long.

We live in Invercargill, there is a hospital that comes under Otago, but we live in Invercargill and many of the services you might take for granted and expect in Auckland - Wellington - Christchurch - Dunedin are simply not available. Regardless of what the mandate for the hospital is, they can only provide a service if they have the resources for those services and the desire to provide them.

So when Whaikaha say "Oh but the DHB provides that service" they might to acute patients, maybe.

But let's be honest please, there is a shortage of medical staff across all areas of medicine, so while you might say the DHB provides a service...they can only provide that service if they have the means and time and the desire to do so. Time is a serious issue when you have a medical need.

For the disabled, time and resources are always second to acute patients, we miss out on services because they are not available due to a shortage of medical staff, resources such as equipment, and time.

And hospitals will always weigh up who can benefit most from what they have to offer and disabled people will always come second in that model.

If a hospital has two patients and one is disabled and one is acute the second patient can make a full recovery...the Acute patient will get the care and treatment it's a fact it happens don't pretend it doesn't.

Disabled people need a different set of services, IF is a good way for the disabled to get what they need, it's not perfect but it's a good service because a disabled person is their own best advocate and expert. We have to be because being disabled means we have to learn about our disability so we can have intelligent conversations with medical personnel. We live firsthand with the disability, we learn quickly what we need, and getting our needs met is a challenge.

So Whaikaha, while you're contemplating the future of IF, consider this, Disability is not an exclusive club, you too could find yourself with a life-changing disability if you do, how do you want to be treated by society, your peers the DHB?

Tracy

Last Updated 17/04/2024

RESOURCES

• Spinal Myelitis