Day 47 - The Press - Children with autism excluded from school due to lack of teacher aide funding

Children with autism excluded from school due to lack of teacher aide funding

By: Maddy Croad

The Press: May 6, 2024

Apollo, 9, has autism. He has been stood down and sent home from school several times due to behaviour he cannot control.

JESSICA SHORT

Children with disabilities are being excluded, stood down and sent home from school because of insufficient funding for teacher aides.

Schools say they do not get enough government money to pay for the specialist help, and are often forced to dig into their own pockets to make up salaries.

But much of the time this isn’t enough, leading to children with disabilities being forced to stay at home.

One teenage girl can only go to school for three hours a day, leaving her mum fearing her daughter will never be able to leave home.

Meanwhile, Jessica Short's 9-year-old son Apollo, who has autism, does not understand why he cannot go to school when his younger sister leaves in the morning.

After moving schools, being stood down more times than Short can count and with the new school only able to provide a teacher aide for 40 hours a year, Apollo was approaching an exclusion. Short pulled him out of school before it went on his permanent record.

The school also phoned Short several times a week,telling her she had to pick her son up due to his behaviour. She was forced to quit her job.

According to the Education and Training Act 2020, all students under 16 must attend school each day, and children with special educational needs and disabilities have the same attendance rights as other children.

However, according to a Ministry of Education report in 2020, students with disabilities were found to be between 1.5 and three times more likely to be stood down and suspended.

Velda Chan, a lawyer at Youthlaw, said principals should not be standing down or suspending students with disabilities.

“There is a guide given to schools. For gross misconduct it asks the principal whether the misconduct was blame-worthy.

Rolleston College principal Rachel Skelton says schools do not receive enough funding to pay for teacher aides to support children who need them.

ALDEN WILLIAMS / THE PRESS

“If you’re doing something as a result of your disability then you’re probably not blame-worthy, you didn’t intend to do those things.”

Chan said it was illegal to send children home part-way through the day, including parents being called to pick up children, or being told children can only attend for certain hours.

Payson Alsop, 13, has experienced both of these things since starting school.

Despite having autism, she has been excluded and stood down several times.

Like Short, Payson’s mum Mckayla Walker had to quit her job because she was frequently called to pick her daughter up from school.

Payson, who now attends Rolleston College, was told she could only attend school for three hours a day as a teacher aide was only funded for 30 hours a year. The school covers the rest.

“She’s probably never going to leave home,” Walker said.

Rolleston College principal Rachel Skelton said the school was not given enough funding to cover teacher aide salaries.

“Funding for teacher aides is challenging due to the fact that funding providers do not pay schools at the rate that the teacher aides are paid,” she said.

“Schools cannot actually afford to staff learners with the funding they are allocated due to this short-fall.”

According to Careers New Zealand, pay for a beginner teacher aide is $23 an hour, but for specialist teacher aides it ranges from $25-37 an hour. The Ministry of Education funds $23 an hour for schools with more than 150 students.

Rolleston College has tried to help Payson Alsop attend for longer, according to mum Mckayla, but it can only fund her teacher aide for so long. Principal Rachel Skelton, pictured, says funding teacher aides is “challenging”.

IAIN MCGREGOR / THE PRESS

Grant Pollard, the ministry’s leader of operations and integration, said the funding was a “contribution”.

“As the employer, the schol boards make employment decisions for staffing that best fit their environment and the needs of students,” he said.

New Zealand Education Institute president Mark Potter said no child was totally resourced, and in most cases schools had to pick up all or part of the cost of supporting a child.

“The whole idea is that the system should be designed around the child, but often the child has to wrap around the system,” he said.

“The system is disabling the children, because it’s not equipping the schools and the teachers with enough or the right skills, tools and support.”

NZEI president Mark Potter says the system is failing students with disabilities.

BRUCE MACKAY / THE DOMINION POST

One mother, who wished to remain anonymous due to her position, said she had seen both sides of the system. She has three children with autism under the age of 16 and is chair of her school’s board of trustees.

Two of her children have been stood down before, both for “gross misconduct”. But she does not blame the school.

“You can see how hard the schools are working and that isn’t their fault. Schools pay extra money to bring in teacher aides, the ministry has offered no support to help my kids attend full-time.”

As chair of her board of trustees she deals with children who have been excluded from school, and said the majority are children with traumatic backgrounds or who are neurodivergent.

“These are kids that could succeed in life if they are given the right support. If they're constantly being stood down or reprimanded for their behaviour that they can’t actually control, that’s a pretty sad situation that we are in.”

Because Walker and Short’s children are high functioning and “smart,” they do not meet the threshold for ongoing resourcing scheme (ORS) funding, which provides support for students with the highest level of need for specialist support.

They both have a single income in their households and children who desperately want to go to school but cannot. They feel their only option now is homeschooling.

- The Press

Day 38 - Northern Advocate - Disability funding cuts huge blow for Whangārei parents of disabled son, 23

Disability funding cuts huge blow for Whangārei parents of disabled son, 23

By: Denise Piper

Northern Advocate: 27 Apr, 2024 06:00 AM

The hospitals are being asked to save an unrealistic amount of money, there is a shortage of GP's and a third of NZDF's navy ships aren't being used due to staffing shortages.

When Whaikaha - Ministry of Disabled People suddenly announced new restrictions to its purchasing rules last month, it meant huge changes to people with disabilities and their whānau. As Northland has a high percentage of disabled people, reporter Denise Piper spoke with one Whangārei family to understand what the changes mean for them.

Kristy Kewene loves her son James very much but admits caring for him is often a handful.

The 23-year-old has autism, cerebral palsy, global development delay, and a heart condition which caused a stroke when he was young, leaving him unable to talk, shower and dress himself.

James also has other medical issues, including seizures, musculoskeletal pain and depression, and has a long list of medications to take.

Kristy Kewene's son James, 23, has a severe disability but she and husband Brett are unable to take a break. Photo / Michael Cunningham

Kristy describes him as like a 3-year-old who often throws tantrums. However, he is not a young child - he is a 23-year-old man with the strength to match.

“He’s thrashing around and if someone’s in the way they might get hurt... He’s intense.”

Kristy and husband Brett’s Kauri home has borne the brunt of this violence over the years.

Walls and doors have had to be covered with tough material or still show the wounds from James’ punches and kicks. Lights are recessed so they can’t be smashed, and the family’s living room is bare of ornaments, TVs and pictures.

James’ bedroom includes a TV, high on the wall protected by clear plastic, plain blue walls and wardrobe door with kick holes.

The home’s ranchsliders will need to be replaced with toughened glass, at an expense of $2600, Kristy said.

James has one caregiver during school hours and a second on weekday afternoons, to enable Kristy and Brett to work. But after 6pm, the couple are on their own juggling caring for their son and getting some much-needed sleep.

James’ sometimes violent nature also means the Kewenes are unable to accommodate their grandchildren, aged 1 and 3, and they have to snatch small moments with them and their older daughter.

“We just love our son but it’s really hard,” Kristy said.

Previously, James was funded to go into respite care one weekend a fortnight, giving Kristy and Brett time to catch-up on sleep and housework. However, a lack of staff to manage his high needs means the respite care is no longer able to take him.

Kristy Kewene says she loves her son James but caring for him takes a toll. Photo / Michael Cunningham

The whānau qualify for $15,000 a year from Whaikaha - Ministry of Disabled People to spend on respite, as part of its individualised funding programme.

Kristy said she and Brett organised a carer to come into their home - where James feels comfortable and they are long past worrying about items being smashed - while they stayed for two nights in a hotel.

The couple could not get a proper rest staying in their own home, even while a carer was there, because James would just smash on their door and want attention, she said.

“It’s not like we’re living the high life,” Kristy said.

“Having the hotel was huge - we would just go there and sleep all Saturday or lie in bed and watch TV. It was lovely, it was such a weight off.”

The Kewenes had just two weekends away when Whaikaha suddenly announced changes to the purchase rules for the individualised funding, cracking down on how the funds could be used.

While the maximum of $15,000 a year remains, the funds can only be spent on a carer - not on a hotel or anything for Kristy and Brett’s relief.

The changes leave them feeling like they have done something wrong, Kristy said.

“It’s like they don’t trust me to use that money. I’m not a thief,” she said.

“That money is no longer there for us to have respite - that’s wrong. Our kids are difficult, we need to have this... there’s nothing to help us.”

Other parents of disabled children also have to stop spending their funding on things like massages, which Kristy said are needed for those lifting their disabled child.

The Kewenes have little funds to pay for the accommodation themselves, after they cover the costs of house repairs, new clothes needed for James and a dedicated car for his carers to use.

The couple run a forestry business but Kristy said her earning potential has been severely cut because of caring for James: She had to leave her full-time chartered accounting job two years ago because she was unable to find a day carer and now works on contract four days a week.

They would prefer respite care or a fulltime residential facility for James - especially because he loved the respite care and having a break from his parents - but options are very limited in Northland, she said.

With the disabled sector being under funded in the north, Kristy said the Government could at least continue the flexible funding for families.

“If you think I’m being frivolous, then put the money into bricks and motor respite care homes or training people really well so there’s lots of caregivers.”

Changes to ensure money spent on disabled people, ministry says

Whaikaha - Ministry of Disabled People said the changes were to address pressure on funding and ensure those with the highest need are prioritised.

In a video to the disabled community, Whaikaha chief executive Paula Tesoriero apologised for the stress and anxiety caused by the way the funding changes were announced.

“These changes were needed because we have seen a significant and ongoing increase in demand for our supports. It was important for us to act immediately.”

Tesoriero said she and the disability issues minister will now work on broader changes for the upcoming financial year, to put the system on a “more sustainable financial footing”.

Disabled people, tāngata whaikaha Māori, carers and whānau will be able to have a say in these decisions to ensure the funding is spent where it is most needed, she said.

In March, then-Disability Issues Minister Penny Simmonds said the changes were not a reduction in funding but were necessary to ensure the funding was used as intended to help disabled people

However, Simmonds was stripped of the portfolio on Wednesday, with Prime Minister Christopher Luxon saying “major financial issues” in the ministry’s programmes have been discovered and it is important to have a senior cabinet minister consider the issues.

Louise Upston, who is also Social Development and Employment Minister, has taken up the portfolio.

Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.

Day 28 - Tracy Peters - Letters to Whaikaha

Letters to Whaikaha

By Tracy Peters

Email: 17 April 2024

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17 April 2024,12:15
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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.....

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17 April 2024,13:47
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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

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17 April 2024, 16:03
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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

Day 25 - RNZ - Continued funding concerns among disabled communities

Continued funding concerns among disabled communities

By Georgie Hanafin

RNZ: 12/04/2024 6:49 am

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 8 - The Southland Times - Funding changes opposed

Funding changes opposed

By Louisa Steyl

Published by The Southland Times on Tuesday March 26, 2024

It has been a long, stressful, "nightmare" few days for Tracy Peters.

She woke up to a Google alert last Monday morning saying that Whaikaha, the Ministry of Disabled People, was pausing individualised funding while it made changes to its purchasing rules and equipment modifications service.

"I thought it was a scam," the Southlander with paraplegia said.

For both her and her husband, who has Asperger's syndrome, it meant they could not access the support that enables them to live independently.

Peters, alongside Southland's disability community, plans to protest the changes outside Minister for Disability Issues Penny Simmonds' office on Thursday. She is encouraging people around the country to do the same.

The ministry made the announcement in a Facebook post.

Chief executive Paula Tesoriero took to Facebook over the weekend to apologise for the way the ministry communicated the changes. "I want to acknowledge that the rules ... took you by surprise. We know that the way we went about announcing these changes caused stress and anxiety, and for that I am truly sorry."

Tesoriero said last week rules about what the ministry would pay for were relaxed during the Covid-19 pandemic but needed to be reconsidered. As costs increased and more people were using the service, the ministry had ended up $65 million in the red, she told RNZ's Nine to Noon.

In her apology, Tesoriero said lessons had been learned, and would inform how the ministry worked in future.

People would not lose their carer support, she said, and the ministry would be considering broader policy settings in consultation with the community.

Peters said she could understand the the ministry needed to tighten its belt, but she asked how it had been allowed to fall so far into debt, and why the announcement was made without consulting the community who would be directly affected.

"If they didn't have the money to grant my budget, why did they?"

Being unable to provide her support carer with personal protective equipment and travel payments meant her contract was void until the situation was clear, she said.

Because she could no longer access payments for ride services, she was trying on her electric wheelchair, which was in itself risky, because of rain, and worn tyres that needed replacing.

Peters said she used individualised funding because she did not qualify for ACC payments. She went through regular "gruelling, terrifying" assessments to set a budget, and every time she needed to use that budget, she had to submit a claim explaining why it was needed.

"It's exhausting. It's scary, and if I don't dot the Is and cross the Ts, It's delayed."

The assessors were strict, Peters said, and there had been times, such as when her husband needed noise-cancelling headphones, where the couple had to contribute.

"The sacrifice is always groceries."

Peters hit back at Simmonds' comments that carers had been taking advantage of the funding to pay for their own massages, overseas travel, pedicures and haircuts.

There had been instances when she had claimed for massages for her carer, she said, but it was because it was suggested by a physiotherapist to help with the heavy lifting her carer was doing.

And if she was at the hospital, she wasn't going to hesitate to buy her career a coffee, Peters said.

It was important to understand that, she added, that cuts like this affected more than just the disability community.

Suppliers and service providers would lose income, and important staff would need to be off work to support their family members with disabilities.

"The entire country will be impacted adversely," she said.

But beyond the financial implications, there was a loss of dignity when arbitrary decisions were made on someone's behalf, Peters said.

"We have fought for our rights. They weren't given to us. Every person in this country with a disability has had to fight for their rights to exist."

She wanted the ministry to consult with the community about any funding changes.

In a statement, Simmonds said no disabled person would lose access to funding for essential services, equipment or support.

"The changes that the Ministry for Disabled People, Whaikaha, is making are simply about ensuring the funding allocated to disabled people is actually being used for that purpose," the minister said.

"I would appreciate that the consultation was not as wide as it should have been before implementing the changes. We are improving processes around communication."

A spokesperson for Simmonds said on Friday that she would have no more to add.

Disabled United will conduct a peaceful protest outside Simmonds' office on Kelvin St, Invercargill from 10am on Thursday. Simmonds' spokesperson said she would not be in Invercargill that day.

Protesters will also gather at the Bridge of Remembrance in Christchurch from 11am and at Meridian Mall in Dunedin.

Resources

• Link to front cover article on the Southland Times

Day 5 - The Press - Disempowering and dehumanising’: Whaikaha funding cuts through eyes of affected

‘Disempowering and dehumanising’: Whaikaha funding cuts through eyes of affected

By Maddy Croad 

The Press, March 23, 2024

Click to the original article to watch the video

Thousands were left shocked earlier this week when Whaikaha, the Ministry of Disabled People, announced it was placing restrictions on disability funding. The changes mean many disabled Kiwis can no longer access funding. Two affected Christchurch locals share their story with Press reporter MADDY CROAD.

Pictured at their New Brighton home are Shary Bakker and Andrew Cockell, with two of their children - River Bakker, 7, and Mira Bakker, 5 - who are both autistic and have high needs.

PETER MEECHAM / THE PRESS

Shary Bakker is a Christchurch mother with three autistic children.

On March 18, I was woken up by two of my primary school-aged autistic children. One, still toilet training, needed a nappy change. The lights flicked on and her brothers groaned and screamed as they woke up. Another day began.

As I entered the living room, I could hear my autistic teen bouncing on our trampoline. She was wearing her noise cancelling headphones, which we paid for with Whaikaha disability funding, to calm herself. Before we had the trampoline, also Whaikaha funded, my daughter engaged in frequent self harm, smashed things, cried and ripped curtains as she tried desperately to regulate her emotions.

At 11.52am I received a text from my friend. “Have you seen the changes they’re making to disability funding?”

I frantically searched for information. Finally, I stumbled upon a social media post showing Whaikaha’s changes. My heart sank. I don’t know which feeling was stronger, anger or devastation. With Whaikaha’s changes, my three autistic children had been abandoned.

The disabled community fought for years for flexible funding. Unlike the announcement from Whaikaha, these changes did not happen overnight. Flexibility came with restrictions, including proof that purchases met four criteria. It was not an open cheque book, as Minister for Disability Issues Penny Simmonds implied.

I am a teacher and cannot work full-time due to my children's disabilities, resulting in a loss of income. My husband is forced to work from home.

My children used to have a carer, so my husband and I could have respite. She quit over a year ago and we haven’t been able to find a replacement since. While we could no longer take a break from the kids, flexible funding could still allow us to buy items such as timers for transitions, compression singlets and weighted blankets. All of which comforted the kids and calmed the household.

River Bakker and Mira play on the trampoline at home in New Brighton. The trampoline was paid for with Whaikaha disability funding.

PETER MEECHAM / THE PRESS

We purchased wiggle carts to help our kids balance; we could also finally send them to swimming lessons in smaller groups.

Our ‘individualised funding’ was life-changing by making us feel less isolated as parents of autistic children. More importantly, it helped our children thrive.

Whaikaha’s sudden changes have destroyed the progress we have made.

Forcing the vulnerable to struggle cannot bring benefit to New Zealand. Don’t we want a country where everyone thrives? Because it seems this current government doesn’t.

Marama Gravett is concerned about cuts to disability support.

KAI SCHWOERER / THE PRESS

Marama Gravett has a hypermobility disorder that causes her joints to easily dislocate. She uses a power wheelchair to get around.

When the news of the Whaikaha changes came out on March 18, people in the disabled community were shocked and upset. I’m concerned, however, that much of the narrative has been focused on carers, rather than the disabled people themselves.

That’s not to say that carers are not important, nor that they do not deserve support. But when talking about disability issues, it’s important to focus on disabled people. It feels disrespectful and dismissive to talk about us, and not with us.

I was planning to use some funding to fund hand-control vehicle lessons. My only option now is catching a bus. There have been times where I have gone to get on a bus and it’s too full for me. A power wheelchair cannot fit in most cars, so I cannot ask a friend for a lift.

I have funding to allow me the autonomy to determine my own support. That autonomy has now been taken away from me. I have been told that all I can do now is hire a support worker, to give me a break from myself.

Gravett says the cuts “shocked and upset” many in the disabled community.

KAI SCHWOERER / THE PRESS

Some of us neither need nor want carers as that is not what will support us to be happy and fulfilled individuals. The point of individualised funding was just that - individual - to put the power back in the hands of the disabled. That power has now been taken away. We have been told what is supportive, instead of being allowed to determine that for ourselves.

It’s wrong, it’s disempowering, and it’s dehumanising.

In a press release from minister Penny Simmonds on March 20, she said: “No disabled person to lose essential services.” I am here to say that I am a disabled person, and yes, we will.

She continued to say: “We intend to ensure that funding gets directly to where it is needed.” I can say I am a disabled person and it won’t.

The funding changes will take independence away from people with disabilities, Gravett says.

KAI SCHWOERER / THE PRESS