Day 165 - NZ Herald -The Government is basically saying disabled people are not up for the job

The Government is basically saying disabled people are not up for the job

By: Jonny Wilkinson

The NZ Herald: 05 am, 31 August 2024

THREE KEY FACTS:

Whaikaha - Ministry of Disabled People, will have its functions dramatically reduced, with responsibilities for commissioning services for people with disabilities passed to the Ministry of Social Development by October.

Disability support services comprise the bulk of Whaikaha’s $2.6 billion budget. It is the third time in half a decade commissioning services will move ministries.

MSD will establish a new department for commissioning disability support services, which will report to a new deputy chief executive.

Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangārei based disability advocacy organisation.

OPINION

The 80′s gave me a taste for what is now regarded as “retro” music and this week I have been slightly obsessively listening to Public Enemy’s song Fight the Power.

Public Enemy changed the hip-hop scene into a vehicle for political expression. Fight the Power is a seminal protest anthem blending aggressive beats with politically charged lyrics. It is a call for action.

On Thursday last week, the coalition Government announced plans to strip Whaikaha, the Ministry of Disabled People, of its responsibility for delivering support services, shifting it to the Social Development Ministry.

Whaikaha will be downsized into a smaller, standalone department focusing on advocacy and policy advice. Just two years after its establishment Whaikaha is being massively scaled back following the findings of an independent review.

The review, led by Sir Maarten Wevers, found the delivery of support services was inconsistent and hampered by how Whaikaha had been set up.

When I heard the announcement, I was gobsmacked. I was still in the process of recovering from the announcement in March regarding the restrictions on Flexible Funding.

In one announcement Whaikaha the Ministry of Disabled People has been dismantled.

The ministry is something that disabled people have fought and lobbied for, for decades, wanting our own ministry that would preside over disability services and advocate for disabled people’s rights in New Zealand.

Yes, it has had a few teething problems but there is no reason to kick it into touch. Whaikaha was developing a strong sense of disability culture with nearly 40% of its staff identifying as disabled.

By shifting the delivery of Disability Support Services to the Ministry of Social Development the Government is basically saying disabled people are not up for the job.

By scaling Whaikaha down into a toothless advisory and monitoring entity, it sounds much the same at the Office of Disability Issues which did effect much change over the years. What the difference will be between them? No one seems to know.

This has really sent the disabled movement in New Zealand back decades. Other concerning aspects of the announcement was a pause on the Enabling Good Lives roll out and Indicative budgets and monitoring of Needs Assessment and Service Coordination organisations (NASCs) being reinstated.

Over 30 years ago, Disability Support Services sat in the Department of Social Welfare. These were then trundled over to the Ministry of Health and for decades disabled people have felt like the poor relation of the monolith that is Health, until 2 years ago when we finally got our own ministry. Now things have gone back 30 years.

The Enabling Good Lives approach attempted to put disabled people and their families in control of the services and supports they needed, which was starting to address the power imbalance between the Needs Assessment and Service Co-ordination (NASC agencies) and disabled people.

The announcement has clinically put the power balance back in favour of the NASC, giving them the mandate to be gatekeepers and controllers of any supports available.

The decision to strip Whaikaha of Disability Support Services wasn’t even in the Independent Review!

Was it a purely political decision to dismantle what the former Government had done? I asked Mojo Mathers, former Green MP, and the first (and only) DEAF member of Parliament and now Disabled Persons Assembly CEO, what her take on this was. Mojo commented that, “The downsizing of Whaikaha with no consultation with disabled people has hit our community hard”.

“Disabled people want more choice and control over their lives, not less. Decades of underinvestment in disabled people has let to poorer outcomes for our health and wellbeing. This can be turned around. To do this, Government must engage properly with disabled people going forward.”

Disability support has been grossly underfunded for decades. It isn’t the fault of Whaikaha, the issue is with the fundamental funding model of disability support in NZ.

We need a funding model more similar to ACC, as the disparity between ACC-funded disability supports and Whaikaha (now MSD-funded support) is staggering.

ACC offers gold-plated services in comparison. Australia has had a National Disability Insurance Scheme for years, and while it has had its own issues, it is serving its disabled people well.

I contacted Huhana Hickey, an old friend and disability rights Lawyer and asked her to give me a comment on last week’s announcement of changes to the disability sector. Here are her words:

“In a nutshell, we are back to the 1990′s. For how long? I don’t know but we can consider this is going to be us for two more years minimum and longer if we don’t demand change and stand up against the discriminatory, unethical inequitably designed decisions made around our lives.

“I know it’s hard, believe me I was meant to retire by now and I can’t. Why? Because unless we make a strong and collective stand against the abuse we are receiving from this coalition, then we won’t get change and we remain invisible. Sometimes we have to do the tough to be heard.

“I can’t do this alone, a few of us can’t do this without ALL of our community standing beside us, with us, All of us”

The Tai Tokerau EGL Leadership Group is organising a protest about these radical draconian changes to our Disability sector on the 11th of October at 12.00 in the Civic Square outside the new WDC building on Rust Avenue. For more information contact tessa@tiaho.org.nz

Last Updated 10/09/2024

Resources

• https://www.nzherald.co.nz/northern-advocate/news/the-government-are-basically-saying-disabled-people-are-not-up-for-the-job-jonny-wilkinson/HGM53TFQE5H77NYOAXYB3OJWNI/

• Tiaho Trust - Disability A Matter of Perception

• Whangarei Protest

Day 92 - NZ Herald - Govt scraps pay top-up; 900-plus disabled workers miss out on minimum wage

Govt scraps pay top-up; 900-plus disabled workers miss out on minimum wage

By: Derek Cheng

The NZ Herald: 19 Jun, 2024 05:22 PM

The Government is saving $56 million over five years by dumping a programme topping up the pay of disabled workers to the minimum wage.

That could see 900-plus workers - mostly with intellectual disabilities - continue to be paid as low as $2 an hour, but the Government says it’s better than not working at all.

The previous Labour Government had planned to end the exemption that allowed employers to pay disabled people below the minimum wage. Budget 2023 allocated $37.3m over four years to top up their pay to the minimum wage (currently $23.15 an hour) - from next year.

But that was axed in Budget 2024, boosting the Government’s coffers by $11.34m in the coming year, and $56.345m over five years.

Social Development Minister Louise Upston was grilled about this today at the Social Services and Community Select Committee, leading to heated exchanges between her and Green MP Ricardo Menéndez March, as well as with her ministerial predecessor, Labour deputy leader Carmel Sepuloni.

Menéndez March asked Upston how she could justify a disabled person being paid $2 an hour for “minimum wage work”.

Upston said this group of New Zealanders who “would clearly produce less an hour than someone else” would “otherwise be completely shut out of a job”.

“I wouldn’t want to be the minister to rip that away from them.”

Green MP Ricardo Menéndez March accused the minister of an 'almost eugenic-type definition of productivity'.

Photo / RNZ

Menéndez March then accused Upston of an “almost eugenic-type definition of productivity”, highlighting her comments on a disabled person producing less.

Upston scoffed at this comment and said disability enterprises - which employ disabled people - “weren’t confident the previous [plan] was going to enable them to retain disabled people in work”.

“That was a very significant concern to me.”

Working disabled people also had other supports including the Supported Living Payment, she added, while employers were also being supported to provide what they needed to hire a disabled person.

Sepuloni said Labour’s Budget 2023 commitment had no intention of anyone losing their jobs.

“The plan was for a government subsidy of sorts for employers so they [the disabled workers] could work with dignity and receive the minimum wage.”

She said the $11m the Government was pocketing in the coming year could have gone towards those workers being paid the minimum wage.

“Not if they weren’t able to keep a job,” Upston retorted.

Sepuloni: “It’s subsidising them. This argument is going around in a circle. It makes no sense.”

Labour deputy leader Carmel Sepuloni.

Photo / NZH

9000 beneficiaries worse off

Sepuloni also grilled Upston about the 9000 beneficiaries who would be earning less after Budget 2024, but Upston said that was unexpected and she hadn’t received any advice on it.

There have been 14,000 more people on the Jobseeker benefit in the past six months despite the Government wanting to have 50,000 fewer Jobseeker beneficiaries by 2030.

But there was also a drop in the number of hardship grants over that period, despite the Salvation Army reporting people showing up for food parcels who have been declined a hardship grant.

Of the two types of hardship assistance, food grants dropped 4.8 per cent in the March 2024 quarter compared to the previous year, while emergency housing grants fell 16.2 per cent over the same period.

Upston said there had been no policy changes on hardship grants, though Ministry of Social Development chief executive Debbie Power said a single grant over $400 now needed manager approval.

The forecast peak for Jobseeker beneficiaries is now 202,000 in January 2025 (up from 188,000 in March this year), and the Government has introduced seminars for those on a Jobseeker benefit within a fortnight of signing up.

Menéndez March asked if there was any evidence or data on seminars moving beneficiaries into work or whether the minister was “just going on vibes”.

When Upston shared a story of an employer coming to a seminar in Porirua and hiring one of the attendees, who was on the job five days later, he dismissed this as “anecdotal”.

He added: “Please tell us you’re seriously interested in data and evidence rather than vibes ... You measure how many people you punish [through welfare sanctions] but not how many get into work after a seminar?”

Upston shared another story about an employer coming to a seminar in Christchurch looking for workers before shooting back that it was unreasonable to ask for a figure “that talks about every participant in every seminar across the country”.

She agreed with Sepuloni that one-to-one case management was far more effective in getting beneficiaries into work. She would make announcements shortly about more case managers, even though total MSD staff numbers had fallen from 9500 at the height of the pandemic to a forecast 8700 by the end of next year - including 200 voluntary redundancies.

Menéndez March tried to ask Upston about the tighter rules for emergency housing, including occupants being interviewed about eligibility daily or every fourth day instead of every three weeks.

But the questions were ruled out because Upston is not the minister in charge of emergency housing.

Derek Cheng is a senior journalist who started at the Herald in 2004. He has worked several stints in the press gallery team and is a former deputy political editor.

Last Updated 19/06/2024

RESOURCES

• Govt scraps pay top-up; 900-plus disabled workers miss out on minimum wage

• https://www.nzherald.co.nz/author/derek-cheng/

• https://www.dunz.org.nz/2024/06/day-88-community-law-employment-access.html

Day 83 - NZ Herald - Coroner critical of Spectrum Care after woman left unchecked for two days, found dead in bed

Coroner critical of Spectrum Care after woman left unchecked for two days, found dead in bed

By: Catherine Hutton

Open Justice reporter - Wellington

NZ Herald: 10 Jun, 2024 05:00 AM

Ruth Finau, an intellectually disabled woman living in supported accommodation provided by Spectrum Care, was left unchecked for two days before staff discovered her dead in bed. 

Photo / Supplied

A young intellectually disabled woman living in supported accommodation was left unchecked for two days before staff discovered her dead in bed.

Now a coroner has found the reason for the delay in finding Ruth Kathleen Toka, also known as Ruth Finau, was because staff feared the 30-year-old might act aggressively so they left her alone, rather than risk waking her when they saw her lying on her bed.

Coroner Tania Tetitaha is critical of Spectrum Care and the standards of care it provided Finau, who was living in a small flat in South Auckland when she died from sudden unexpected death in epilepsy in July 2021.

“Due to fears of aggressive behaviour, staff also allowed Ms Finau to remain in her room unchecked for two days. Given she had epilepsy and was known to be at times medically non-compliant, regular physical checks upon her welfare should have been undertaken,” she said in recently released findings.

Finau lived in the Manurewa flat with Spectrum Care staff providing cooking and cleaning support. Every afternoon staff would go to the flat and ask if she wanted them to cook dinner. She did her own dishes and kept her room tidy with some support from staff.

She liked her independence, making her own breakfast and lunch, doing her own food shopping, attending church and cultural events and catching public transport to get around the community. She visited her family once a week and enjoyed singing and watching You Tube videos of people auditioning for musical talent shows.

But, Finau had a history of lashing out, with seven reported incidents of verbal and physical aggression. Coroner Tetitaha found it was fear of that aggressive behaviour that allowed Finau to remain unchecked in her room for two days.

Finau’s older brother Jonathan Toka told NZME his sister could be aggressive, but only when she felt she was being ignored or treated badly.

He described his younger sister’s death as “shocking” and said he felt Spectrum Care had tried to fob off the family, initially telling them his sister had died of natural causes and Spectrum wasn’t at fault.

Toka said the coroner’s report had completely contradicted this, with tests showing there was no, or very low levels of the anti-convulsant medication his sister needed to take, found in her system when she died.

A Spectrum Care spokesperson told NZME her passing was a tragedy for her family and those who supported her and changes have since been made, including providing better oversight of clients who are responsible for managing their own medication.

Before her death, Finau had given staff the food she wanted cooked for dinner.

It was delivered to her room and later she went to thank the staff member for cooking the meal, before returning to her room.

Coroner Tania Tetitaha was critical of Spectrum Care and the standards of care it provided Ruth Finau.

Photo / Tania Whyte

The next day - July 19 - a staff member went to ask Finau what she wanted for dinner. Music was playing and she was lying on her bed. Due to fears of her aggressive behaviour the staff member decided not to wake her. No one heard from Finau that evening or during the night.

The next day a staff member again checked on Finau and noticed she was lying in the same position as the day before. She shook her but Finau was unresponsive. Emergency services were called and a paramedic confirmed she was dead.

Along with her intellectual disability and epilepsy, Finau also had diabetes.

Staff had “negotiated” with Finau so she had a week’s worth of blister-packed medications she self-administered.

Every day staff reminded her to take her drugs. If she was in a good mood she took them, but if angry, Finau would often refuse, even hiding the blister pack so staff couldn’t check it.

Sometimes she forgot to take her drugs altogether.

A post-mortem found Finau was not taking her anti-convulsant medication at the time of her death, with no evidence of one of the drugs in her system and low levels of another.

In her findings, Coroner Tetitaha was critical of Spectrum Care and the standards of care it provided, noting there was no formal monitoring to ensure Finau was taking her medication.

“The evidence indicates staff were reluctant to actively monitor Ms Finau due to aggressive behaviour.”

It recommended Spectrum undertake its own audit of the case.

Spectrum’s communication and marketing manager Justin Walsh told NZME Finau was strongly committed to managing all aspects of her life, including her medications.

But in the absence of a compulsory treatment order, no one can be forced to take their medication, he said.

Walsh said as a result of the tragic event, Spectrum initiated an independent review which recommended a formal assessment process to document those clients who took their own medication, along with agreements and monitoring requirements.

These were now overseen and reported on monthly.

That review also found staff had a good level of information about Finau’s support needs and were well supported by training and specialised staff within the organisation.

The coroner’s five recommendations included defining the minimum requirements for ‘oversight’ of people receiving around the clock care, ensuring formal procedures are in place for people managing their own medicine, undertaking cultural reviews of all clients, having plans in place so staff can leave their shift following a serious incident and establishing procedures for maintaining communication with families who are hard to contact.

The coroner also referred the case to the Health and Disability Commissioner, noting there was a public interest in investigating the death.

The Commission confirmed to NZME it had received the referral and the case was currently under assessment.

Catherine Hutton is an Open Justice reporter, based in Wellington. She has worked as a journalist for 20 years, including at the Waikato Times and RNZ. Most recently she was working as a media advisor at the Ministry of Justice.

Last Updated 10/06/2024

RESOURCES

• Coroner critical of Spectrum Care after woman left unchecked for two days, found dead in bed

• https://www.nzherald.co.nz/author/catherine-hutton/

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.

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 28 - The NZ Herald - Family Carers disappointed by Court of Appeal decision over employment status after Crown appeal

Family Carers disappointed by Court of Appeal decision over employment status after Crown appeal

By Catherine Hutton

Open Justice reporter

The NZ Herald: 17 Apr, 2024 05:00 AM

Peter Humphreys (left) with his daughter Sian, and Christine Fleming (right) with her son Justin Coote. Photo / Sylvie Whinray

A mother who cares for her severely disabled adult son is “bitterly disappointed, but not surprised” by a court’s refusal to acknowledge the work she does.

The Court of Appeal has released its much-anticipated decision relating to family carers, overturning earlier rulings that a mother who cares for her severely disabled adult child is deemed to be a “homeworker.” It is the fourth time the Court of Appeal has considered the issue of funding of family carers for disabled people.

The decision means Christine Fleming, who cares for her high-needs son Justin who has physical and intellectual disabilities, is not entitled to the benefits of an employment relationship as other workers in care homes. Because of this, the court found there was no need to determine backpay or compensation the Auckland woman felt entitled to.

Before 2013 it was the Crown’s policy not to fund the care of disabled adults by family members. In 2013, Funded Family Care (FFC) was introduced, requiring the disabled person to employ a family carer - even if they lacked the mental capacity to be an employer. In 2020, FFC was replaced by Individualised Funding (IF), a fortnightly allowance that allowed a disabled person - or their appointed agent - to employ their own carers.

Fleming and another parent Peter Humphreys argued their children lacked the capacity to enter such an employment agreement and they were instead homeworkers - a person who is by law ‘engaged, employed or contracted” by another person to do work for them in a dwelling. They argued as homeworkers they were therefore employees of the Ministry of Health.

The Employment Court agreed that Fleming and Humphreys were both homeworkers and therefore employees of the ministry and made declarations to that effect.

In addition, Ms Fleming advanced a personal grievance claim at the Employment Court, seeking back pay, compensation and interest, and the imposition of a penalty on the Crown for breaches of its statutory obligations and the asserted employment agreement.

The Crown appealed both decisions. Fleming cross-appealed and the findings from that hearing have now been released by the Court of Appeal.

Christine Fleming’s case

Fleming has cared for her disabled son Justin since birth. She wasn’t aware of the FFC scheme until 2018, but opted to survive on a Work and Income benefit because she argued she would have been financially worse off if she’d accepted the Ministry of Health funding.

More recently she’s moved to IF funding. She claimed she hasn’t been funded appropriately since at least October 2013 and was entitled to back pay, compensation and interest.

Christine Fleming who cares for her severely disabled adult son Justin says she's "bitterly disappointed, but not surprised" by the Court of Appeal decision. Photo / Sylvie Whinray

The Court of Appeal has now found the Ministry did not “engage” or form a relationship with her before she lodged her claim with the Employment Court, meaning she can’t be recognised as a homeworker. It also found the Employment Court erred in finding Fleming had a personal grievance.

Fleming says the court’s decision, which has taken more than a year to hand down, is a lost opportunity to acknowledge and clarify the muddled mess that paying family carers has become. She says it leaves people like her living in the “twilight zone.”

“The current situation is an ‘Emperor’s New Clothes’ scenario. The person with the disability has the choice and control in their daily life. That’s great for those who have the capacity to do so.

“But for a small section who have high and significant needs, significant intellectual impairments and/or medical complications that are typically cared for by the family, this system is a sham.

“I don’t know why our very specific, small section of the disability community, can’t have a separate linked system,” she said.

Peter Humphreys who cares for his severely disabled daughter Sian says the Court of Appeal decision has forced him to question who his employer is. Photo / Sylvie Whinray 

Peter Humphreys’ case

While the court found the Ministry didn’t engage with Fleming, it found it did engage with Humphreys under the now-defunct FFC scheme.

In 2014, his daughter Sian began receiving FFC. By accepting Sian’s application, the court found her father had become a homeworker of the Ministry. But it said that pathway no longer existed because when FFC was replaced by IF, family carers could be employed by third party providers.

It says because IF was “explicitly a “bulk-funding” scheme,” how the disabled person (or their nominated agent) chose to spend the funding was a matter for them.

Humphreys says the decision has left him scratching his head wondering if he’s now his own boss.

“If I’m suddenly the employer, who do I even talk to about health and safety stuff? And what about grievances? Where do I go for that? It’s like I’m stuck in this limbo without all the rights and protections I had as an employee,” he said.

It also found a previous Court of Appeal decision relating to payments for staff who remain overnight, didn’t apply to family carers.

“Family carers in the position of Ms Fleming and Mr Humphreys are not subject to any active control or oversight and are not constrained by the Crown’s terms and conditions as regards what they did outside normal working hours,” the decision said.

“Further, many steps taken by a family carer might equally be viewed as being taken in their capacity as guardian or homeowner.”

Fleming says the case has left her asking, if I’m not a homeworker, then what am I?

“The Employment Court decided my son wasn’t capable of being my employer and I was a homeworker. The Appeal Court has ruled he can be my employer with an agent’s help and I’m not a homeworker. The Ministry of Health says I’m an employee. IRD says I’m a Schedular Contractor. ACC says I’m a home support worker. I say, I’m a mum caring for her disabled son to the best of my ability.”

Fleming’s lawyer Paul Dale KC says they plan to seek leave to appeal to the Supreme Court.

Catherine Hutton is an Open Justice reporter, based in Wellington. She has worked as a journalist for 20 years, including at the Waikato Times and RNZ. Most recently she was working as a media advisor at the Ministry of Justice.

Last Updated 17/04/2024

RESOURCES

• 
  

Media - NZ Herald

The New Zealand Herald is a daily newspaper published in Auckland, New Zealand, owned by New Zealand Media and Entertainment, and considered a newspaper of record for New Zealand. Wikipedia

First issue date: 1863

Owner(s): NZME

Editor: Murray Kirkness (weekday)

Circulation: 107,073 (September 2019)

Format:

• Compact (weekdays and Sundays)

• Broadsheet (Saturdays)

Founded: 1863; 161 years ago; (by William Chisholm Wilson)

Headquarters: Auckland, New Zealand

ISSN: 1170-0777

Reporters: Colleen Brown, Issac Davidson

RESOURCES

• www.nzherald.co.nz

• List of articles and programmes about the funding cuts

• Wikipedia

Updated 06/04/2024

Day 6 - NZ Herald - Disability funding ‘pause’ causes confusion, trauma, and disbelief - Colleen Brown

Disability funding ‘pause’ causes confusion, trauma, and disbelief - Colleen Brown

By Colleen Brown

NZ Herald 25 Mar, 2024 05:00 AM

Travers Brown, aged 43, has Down syndrome. His mother, Colleen Brown, says cutbacks to disability support have caused grief and bewilderment among carers.

OPINION:

Our son Travers is 43 years old. He has Down syndrome and is a cherished member of our family. For his whole life we have had to fight for everything he has achieved. We’ve fought for his right to attend his local primary and secondary schools, to get extra physiotherapy, to go to tertiary education, for his flat. We’ve had to explain why he needed particular support, again, and again and again. We are survivors of an, at times, indifferent education and political system. We are intensely proud of Travers and the life he now leads, flatting with his mates near his brother and one sister, only a pyjama ride away from us. I say pyjama ride – because just because he is an adult, we are still watchful, still prepared to leap into action to support him, whatever it takes, whenever he needs us.

You can never rest being the parent of a disabled person, because with each gain we made, we were made to pay. You see, we are expected to be grateful. Be grateful for every drop of support, be grateful for every medical intervention, be grateful for the school principal who enrolled him, be grateful for the politician who understands your needs. The word “gratitude” sticks in my craw. It goes back to the charity model of the poor receiving charity from their betters. It smacks of others telling you how to run your life with the small parcels of support awarded to you. The crumbs under the table. My beautiful son is not seen as “contributing” to this society. He is not seen as an economic unit – so he really doesn’t matter.

Colleen Brown, whose 43-year-old son Travers has Down syndrome, says cutbacks to support for carers have caused grief and bewilderment. Photo / supplied

This truth was brought home to us with a resounding crash on Monday, March 18, ironically the same week as World Down Syndrome Day. Whaikaha – the Ministry of Disabled People – so hard fought-for by the disability community – announced on its Facebook page the changes to how disability support funding can be used. Never before have I seen the outpouring of grief and bewilderment at a ministry announcement. Without any consultation, people’s lives and how they survive them, have been overturned. There is confusion, trauma, and disbelief in the disability world, that this could be happening. But it is. Apparently, the funding is on “pause”, however you interpret that word.

Apparently, according to Minister Penny Simmonds, carers have been getting massages. Minister, I wish I could have had a massage when I had to lift Travers everywhere, while I was pregnant with our third child. He didn’t walk until he was nearly 3. I applaud those carers who had enough insight to look after themselves. Apparently, our children are okay about going to strange places for respite care, instead of having trusted whānau travel to stay with them, while we might have a night away from home and get some sleep. This isn’t about having a good night out, let me tell you. This is about survival. Caring for any disabled person is a high-trust position. The highest trust I can give anyone, anyone minister, is to care for my son.

The one thought at the end of every parent’s lips is “what happens to my disabled child when I die?”. An uncomfortable thought. But this is our reality.

We are at this position now because successive governments have not invested into the disability sector. Yes, funds have gone into schools, supports and equipment, but not into the challenging areas of respite care, and housing for disabled people and families. Inconveniently it seems, disabled people are living longer, surviving birth trauma and have outstripped all budgets surrounding them.

But it gets worse. This latest revelation is on top of incremental changes to the calculation of benefits, the review of school lunches, the slashing of public transport subsidies, and the reintroduction of prescription charges. Note to ministers: not all prescriptions are covered by the Community Services Card and not all families with disabled children have one. We feel targeted.

We in the disability sector have been down this road before. We have faced this repeatedly through successive governments. Sadly, very sadly, I’ve written before about the cost to lives when people despair so much they cannot see any way forward for them and their disabled family member. And so, we lose people. That is the reality we face. Now is the time to contact those you know in the disability community to show you value them. To show you care. To show kindness. To give us hope.

• Colleen Brown is Child Poverty Action Group disability spokesperson and Disability Connect chair.

RESOURCES

• https://disabilityconnect.org.nz/who-we-are/
• https://www.cpag.org.nz/our-people

Day 1 - NZ Herald - Disability sector appalled by sudden restrictions on support funding: ‘It makes my blood boil’

Disability sector appalled by sudden restrictions on support funding: ‘It makes my blood boil’

By Isaac Davison

NZ Herald 19 Mar, 2024 04:00 PM

Oliver, 7, and his mother Jessica Barnes. Oliver is autistic and non-verbal and the family relies on disability support funding for respite care. Many of their respite options have now be removed under sudden changes made by the ministry, Barnes said.

Sudden changes to support for disabled people are not a funding cut, the ministry says. Advocates and families who rely on the funding disagree and say the changes put their children at risk.

Disabled people and their families are appalled by sudden restrictions on their funding, which they say amounts to a cut to their support services.

The Ministry of Disabled People yesterday announced new limits on what disabled people could purchase with their funding. It also said there would be changes to the way equipment such as wheelchairs and home modifications were prioritised.

The ministry commissions support services for around 50,000 people and funds equipment for around 100,000 people.

Families and advocates said they were “blindsided” by the ministry’s announcement, which came without warning and was effective immediately.

While the ministry said funding was not being reduced, advocates and the Opposition said the new limits were an effective cut because they prevented families from accessing care they needed.

‘Heartbreak’

Disabled people have increasingly been given more choice and control over how they spend their disability support funding under an approach known as Enabling Good Lives.

Jessica Barnes, whose son is severely autistic, said the changes announced yesterday removed all of that flexibility and hugely limited their support options.

“It makes my blood boil and heartbreak all in one,” Barnes told the Herald.

Her son Oliver, 7, was non-verbal, struggled to regulate his emotions and could become aggressive and occasionally violent. He needed help with dressing, showering and eating.

The Tauranga-based family used the disability support funding for respite care.

Shortages and funding limits meant it was extremely difficult to find carers to come into their home, Barnes said.

So they used the funding to pay for swimming lessons, Riding for the Disabled, to purchase an iPad and to pay someone to look after him while they had a night away once or twice a year.

“The swimming lessons were like therapy for him,” Barnes said. “And it gave me a half-hour break once a week. But they will likely be declined now.”

Under the new policy, families seeking respite care are likely to be limited to hiring a carer. Accommodation, travel and food costs for carers have also been removed.

Chrissy Aspden, whose 7-year-old son is autistic, said funding for carers was capped at $80 per day, which made it near impossible to hire or retain someone.

She said that during the Covid-19 pandemic, when carers could not come into their home, she used the funding to purchase an iPad for her son.

“His behaviour is very hard, he is aggressive, he breaks a lot of things. So this would mean he could play by himself and we would take a break. We were also going to use it for Riding with the Disabled. Now all of that has been taken away without any notice.”

Aspden found out about the changes when they were posted on Facebook by the ministry. That Facebook page has been inundated by distressed families criticising the new rules.

Finance Minister Nicola Willis said overall funding for the Ministry of Disabled People was not being reduced. But Labour said that by strictly limiting what people could spend their money on, the ministry was effectively cutting services. Photo / Mark Mitchell 

Finance Minister Nicola Willis said overall funding for the Ministry of Disabled People was not being reduced. But Labour said that by strictly limiting what people could spend their money on, the ministry was effectively cutting services. Photo / Mark Mitchell

Funding cut?

A statement on the ministry’s website said it was not reducing funding but was clarifying what disabled people could purchase.

“They have been a little tricky,” said social policy researcher Jess Berenson-Shaw, who has two autistic children.

“If you can no longer spend the money on the only thing you can spend it on, your allocated funding now sits there until your year is up, then it gets reabsorbed and your funding for next year gets reduced.

“So they are technically not reducing the funding but you can see how they will reduce their spend significantly by changing the criteria.”

The ministry also said it would be prioritising equipment and modification services according to who needed them the most.

This could include wheelchairs, customised standing frames, customised seating systems, adjustable beds, communication devices and housing and motor vehicle modifications.

New Zealand Disability Support Network CEO Peter Reynolds said this meant somebody who had old or broken equipment may not be able to get it fixed or replaced.

“Some disabled people are going to have to put up with what they’ve got even though it may no longer appropriately meet their needs or could in fact pose risk,” Reynolds said.

Disability Issues Minister Penny Simmonds said support funding had been spent on frivolous items such as massages or pedicures for carers. Photo / Phil Smith

Disability Issues Minister Penny Simmonds said support funding had been spent on frivolous items such as massages or pedicures for carers. Photo / Phil Smith

While the Enabling Good Lives approach gave significant freedoms to families to choose how their funding was spent, Reynolds said he was not aware of the scheme being abused by users.

He said it was inevitable that restrictions were going to be placed on the new model of disability support and some in the sector told him they were grateful to have clarification about what the limits were.

But Reynolds was concerned by the lack of consultation about how the changes were made, saying they “came from left field”. A group of CEOs from the disability sector which was established by the ministry for “free and frank advice” knew nothing about the new policy.

Pedicures and haircuts

Disability Issues Minister Penny Simmonds said funding for disability support services had “blown out” under the previous Government, shifting from no flexibility to “total flexibility”.

“What we are saying is prioritise the funding for people with disabilities,” she told reporters at Parliament this afternoon. “Some of the funding has been going to carers - that has to be pulled back and prioritised to the disabled person.”

Simmonds agreed that iPads and other items were useful purchases for children with autism.

“But we have got such broad criteria at the moment that the funding has also been used for massages, overseas travel, pedicures and haircuts for carers.”

She indicated that the funding decisions could be temporary while new funding criteria were established.

The minister also said she would speak to the ministry about how it announced important policy changes, after complaints from the sector about the surprise announcement yesterday.

Labour's disability issues spokeswoman Priyanca Radhakrishnan. Photo / Mark Mitchell

The Labour Party’s disability issues spokeswoman Priyanca Radhakrishnan said the changes were a “clear cut” to front-line services.

“They are disguising it as an area that is potentially overspent that they need to pull back on. They will say that there are no funding cuts per se because the quantum of funding is not reduced but by severely limiting what people can access - that is a cut,” Radhakrishnan said.

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.

Background - NZ Herald - Focus: Student seeks support for petition to have hearing aid batteries funded for life

Focus: Student seeks support for petition to have hearing aid batteries funded for life

By: Cheree Kinnear

NZ Herald: 5am, 22/02/2024

Felix Shaw is calling on support for a petition he hopes to take to Parliament to have hearing aid batteries fully funded for over 18-year-olds. Video / NZ Herald ...

Green Bay High School student Felix Shaw wants support for a petition which he hopes to take to Parliament to have hearing aid batteries fully funded for adults. The 16-year-old, who was born deaf, sat down with NZ Herald Focus reporter Chereè Kinnear to discuss why he wants things to change so hearing becomes something everyone can afford.

Felix Shaw has been deaf his whole life.

The 16-year-old can hear thanks to implants and his $7500 hearing aids, which have been fully funded.

But in two years, he’ll have to take over the costs himself, including paying for hearing aid batteries.

“I discovered last year that when I turn 18, I’m going to have to pay $7.50 a week just so I can hear,” Shaw told Focus.

“Once I started to get my head around the numbers, I thought, ‘This is actually a problem that’s not only affecting me, but is going to affect loads of people’.”

The Green Bay High School student presented a speech to his class on the topic before deciding to take action by setting up a petition.

“I put it up and I didn’t think it would get much support, but I got over 1000 signatures within a short time and everyone was sharing it online, and the support was overwhelming.”

The petition, “Stop people born deaf having to pay for hearing aid batteries once they turn 18,″ has just under 2000 signatures and has turned heads in Parliament.

Felix Shaw was left shocked when he discovered he would have to fund his own hearing aid batteries once he turned 18. Photo / Cameron Pitney

Shaw met with Labour MP Deborah Russell last year, who encouraged him to take the matter to Wellington.

“The dream would be to present the petition on the steps of Parliament,” Shaw said.

“But more realistically, I would meet with a politician and it would be a formal handover, and then the politician would take it down to Parliament then it would get read out in the house.”

National Foundation for Deaf & Hard of Hearing Foundation (NFDHH) chief executive Natasha Gallardo said the petition “highlighted an issue felt by many”.

“We receive a lot of feedback from our community on that particular issue,” she said.

“We try to provide cost-effective batteries through the NFDHH as an option for our community, but it’s definitely something that is felt across the board.”

Around one million Kiwis live with hearing loss, and that figure is set to double by 2050.

There are a range of hearing aid options - some, like Felix’s are battery-powered, while others are rechargeable.

Most need to be replaced every five years.

“Consideration given to a subsidy for consumables, particularly for low-income earners, would be appropriate,” Gallardo said. “You can be fitted with glasses for $150 and that’s it. But you can spend up to $10,000 for premium hearing aids.

“On top of that, depending on what type of hearing aid you have, you’ve got the consumables like hearing aid batteries that are an ongoing cost.”

Shaw hopes his petition will bring change so hearing becomes something everyone can afford.

Last Updated 17/08/2024

Resources

• https://www.nzherald.co.nz/nz/focus-student-seeks-support-for-petition-to-have-hearing-aid-batteries-funded-for-life/Q6K75U72QFASVNBVNSUTBAOVSE/

• https://greenbayhigh.school.nz/news/term-2-2024/felix-takes-on-parliament

• Step by step guide PDF (Google Drive)

• Change.org petition