Jonny Wilkinson: Come on Minister Simmonds, we need a champion of our people - not a champion of the covert hatchet
By Jonny Wilkinson
Northern Advocate 30 Mar, 2024 05:00 AM
Surely the Minister of Disability Issues, Penny Simmonds should have known about these demand pressures. She is not new to these issues.
OPINION
Beware the Ides of March.
Okay, it’s a couple of days out but the announcement about changes to Disability Services on March 18 was foreboding to say the least.
Out of the blue, Whaikaha – Ministry of Disabled People proclaimed changes to the Purchase Rules for Individualised Funding.
The reason given was that: “Whaikaha has a fixed amount of funding. Growing demand has meant they are already forecasting an overspend in this financial year and to manage these demands and to ensure that disability funding is directed to those that need it the most, Whaikaha has made some difficult decisions”.
The changes target Flexible Funding. This funding has enabled disabled people and their whanau to be self-directed about the services they access through mechanisms such Individualised Funding, where they can manage their own allocated budget by hiring people or buying goods or services they need.
This meant that disabled people have been able to hire a friend or a family member, or someone else they have connected with and who has an understanding of their needs.
This self-determination is articulated by the Enabling Good Lives (EGL) approach, a foundation and framework to guide positive change for disabled people, promoted by … Whaikaha.
The news sent shockwaves throughout the disabled community, instantly raising a multitude of questions.
Where was the consultation, given, according to its website: “The Government created Whaikaha - Ministry of Disabled People to lead a true partnership between the Disability Community, Māori and Government”.
Why didn’t the current or past Minister of Disability Issues advocate for additional funding to address increased demand?
How do these changes in Flexible Funding contribute to the EGL Approach and the much-hyped System Transformation?
The decision to implement restrictions to disability supports strikes at the very core of Whaikaha’s principles. It not only undermines the progress made in enhancing the quality of life for people with disabilities but also threatens to unravel the fabric of inclusivity and partnership that Whaikaha sought to weave.
One of the key pillars of the EGL approach is self-determination. By empowering individuals to make decisions about their own lives and support needs, Whaikaha aimed to foster independence and dignity.
However, the funding cuts jeopardise this fundamental principle, forcing individuals to navigate an already complex system with fewer resources and support structures.
Since the announcement, we have been repeatedly told that individual allocations will not be cut, but rather that the criteria around the flexibility will be tighter and clearer.
But hang on, isn’t the catalyst for these changes a budget blowout, which requires some significant savings to address the budget shortfall?
Oh I get it: By tightening the criteria on Flexible Funding, some disabled people and whanau will not be able to spend all their allocation because the criteria doesn’t give options that work for them.
They have no respite facilities for their disabled whanau member to utilise - maybe they are in Tai Tokerau where external respite providers are close to zilch?
Where the only way dog-tired carers can get a break is to book into the local motel, while a carer steps into their worn-out shoes for a weekend and … sleep.
In my conversations with such 24/7 carers, this uninterrupted sleep throughout the night is the main goal.
If they were getting a massage for an overworked back, dealing with the lifting, positioning, toileting and dressing of their loved one - well, good on them.
But, not any longer … bingo.
No cuts in allocations, but hey presto - reduced costs.
Clever but pernicious. Some whānau are already struggling to navigate the intricacies of Individualised Funding and cannot use their full allocation right now, without imposing a list of exclusions which is ambiguous at best and cryptic at worst.
Respite options are included in the changes in criteria, with the ability to purchase items that would contribute to relieving carers of continual attention to their loved ones, such as electronic devices or recreational equipment like trampolines (which can be very therapeutic for some autistic children) are for the chop.
Yep - the same Ministry that has spent the past 18 months convincing whanau that they can be creative and flexible, to work around the glaring systemic gaps in provision for disabled people, is unfortunately having to sing to a different piper.
Surely the Minister of Disability Issues, Penny Simmonds should have known about these demand pressures. She is not new to these issues.
The Southland Times on March 31, 2022 quoted the then Opposition MP for Invercargill: “As the National Party’s disability spokesperson, I’ve been working hard to achieve improvements for carers and to get a commitment from the Government on the provision for extra support”.
Respite care payments are a major stumbling block. They are capped at $80 a day, after a disappointing $5 increase from the Government last year. They fall well below the minimum wage and make it virtually impossible for carers to attract people to these roles, unless they top up the funding themselves.
Come on Minister Simmonds - we need a champion of our people- not a champion of the covert hatchet.
Put your money where your mouth is and get in there and advocate to your cabal of colleagues. After all, the measure of a civilised society rests with how it treats its most vulnerable members.
Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangarei based disability advocacy organisation.
Saturday 30 March 2024
Media - RNZ
Radio New Zealand, commonly known as Radio NZ or simply RNZ, is a New Zealand public-service radio broadcaster and Crown entity that was established under the Radio New Zealand Act 1995. Wikipedia
CEO: Paul Thompson (Sept 2013–)
Founded: 1995
Owner: Minister of Finance (50%); Minister for Media and Communications (50%)
Headquarters: Radio New Zealand House, Wellington.
Broadcast 24 hours a day 7 days a week
Reporters Email story ideas or press releases to the RNZ News team: news@rnz.co.nz.
RESOURCES
Day 12 - ODT - Disabled community protests funding rules, cuts
Disabled community protests funding rules, cuts
ODT 30/04/2024
By Mark John
Click here to watch this video > Dunedin's disabled community feels dismissed and undervalued by the government’s recently announced funding reductions.
The Ministry of Disabled People announced funding changes on March 18, including new limits on what disabled people could buy and changes to the way equipment was prioritised.
Members of Dunedin’s disabled community march down George St on Thursday. PHOTO: STEPHEN JAQUIERY
Protest organiser Dr Amy Taylor said the community was angry that their flexibility and funding had been taken away from them.
"We felt dismissed, we didn’t feel valued as members of society.
"I mean it’s our funding, we know what we need it for — they don’t, how can they possibly know. They don’t live our lives."
Protesters outside Minister for Disabilities Penny Simmonds’ electorate office in Invercargill on Thursday morning. PHOTO: TONI MCDONALD
She said she did not get any funding as a wheelchair user herself but did receive child disability allowance for her two children who both had ADHD.
"I was really hoping because we’d had a referral for carer’s support that I would be able to get some support to care for my two ADHD children, as a wheelchair user it’s not easy.
"But increasingly it’s looking like that might not even be possible."
She said she was worried she would not have the funding to be able to continue using tools to help her look after her children.
ODT 30/04/2024
By Mark John
Click here to watch this video > Dunedin's disabled community feels dismissed and undervalued by the government’s recently announced funding reductions.
The Ministry of Disabled People announced funding changes on March 18, including new limits on what disabled people could buy and changes to the way equipment was prioritised.
Members of Dunedin’s disabled community march down George St on Thursday. PHOTO: STEPHEN JAQUIERY
Protest organiser Dr Amy Taylor said the community was angry that their flexibility and funding had been taken away from them.
"We felt dismissed, we didn’t feel valued as members of society.
"I mean it’s our funding, we know what we need it for — they don’t, how can they possibly know. They don’t live our lives."
Protesters outside Minister for Disabilities Penny Simmonds’ electorate office in Invercargill on Thursday morning. PHOTO: TONI MCDONALD
She said she did not get any funding as a wheelchair user herself but did receive child disability allowance for her two children who both had ADHD.
"I was really hoping because we’d had a referral for carer’s support that I would be able to get some support to care for my two ADHD children, as a wheelchair user it’s not easy.
"But increasingly it’s looking like that might not even be possible."
She said she was worried she would not have the funding to be able to continue using tools to help her look after her children.
Amy Taylor. PHOTO: STEPHEN JAQUIERY
Dr Taylor said she did not have confidence in the Minister for Disabilities, Penny Simmonds, but blamed the coalition government which had made some "serious mistakes".
The protest was also attended by Dunedin City Council councillors Sophie Barker, Carmen Houlahan and Christine Garey.
A protest was also held outside Ms Simmonds’ electorate office in Invercargill on Thursday morning.
mark.john@odt.co.nz
Dr Taylor said she did not have confidence in the Minister for Disabilities, Penny Simmonds, but blamed the coalition government which had made some "serious mistakes".
The protest was also attended by Dunedin City Council councillors Sophie Barker, Carmen Houlahan and Christine Garey.
A protest was also held outside Ms Simmonds’ electorate office in Invercargill on Thursday morning.
mark.john@odt.co.nz
Media - Newshub
Newshub is a New Zealand news service that airs on the television channel Three, and on digital platforms. It also operated on radio stations run by MediaWorks Radio until December 2021. Wikipedia
Network: Three
Release: 26 November 1989
Network: Three
Release: 26 November 1989
Reporters: Amelia Wade, Trent Doyle
RESOURCES
Day 12 - Carers NZ - Infometrics Report – Economic Contribution of Caregiving November 2022
Infometrics Report – Economic Contribution of Caregiving November 2022
The economic contribution and sacrifices of unpaid family, whānau and aiga carers in New Zealand for Alzheimers NZ, Carers NZ, the Carers Alliance, IHC and the Ministry of Social Development.Authorship: This report has been prepared by Rob Heyes with input from Dave Grimmond
Executive Summary
Unpaid carers are people who care for friends, family, whānau and aiga members with a disability, health condition or illness who need help with everyday living. The majority are unpaid for their caring work. Approximately 1 in every 7 adult New Zealander identifies as being an unpaid carer – 432,000 people, 14% of the adult population based on the 2018 Census. Due to Census undercounting the true number could be as much as 50% higher – 655,000 people. However, we think the actual count of carers should be used, with the qualification that this count is likely a significant under-count. The higher number is based on assumptions that cannot be verified. Aside from being undercounted, unpaid carers are a hidden workforce for other reasons, not least because many consider caring to be part of their family responsibilities. But the reality is that without unpaid carers, the already overburdened health system would not be able to cope with the extra demand for its services. To put this in context, there are 7.9 unpaid carers for every practising nurse, and 9.6 unpaid carers for every personal care assistant or aged and disability sector carer.
Purpose
Carers NZ, Alzheimers NZ, the Carers Alliance, and the Ministry of Social Development asked Infometrics to update and expand the analysis of Infometrics’ earlier report about the economic value of unpaid caring carried out in 2014. It aligns with the objective of recognising carers and their contributions in Mahi Aroha the Carers’ Strategy Action Plan 2019-2023, specifically Action 1.4, which is to improve data about carers. We start by looking at the characteristics of carers using 2018 Census data and findings from Synergia’s 2021 State of Caring Survey, the results of which are published in the recently released State of Caring in Aotearoa report. This helps us understand which sections of the population caring responsibilities fall on the most.
To read the full report, go here. (PDF)
Friday 29 March 2024
Day 11 - Newshub - Whaikaha boss was aware Ministry of Disabled People was $65m over budget
Whaikaha boss was aware Ministry of Disabled People was $65m over budget
29/03/2024 News Hub
By Amelia Wade
The boss of Whaikaha has told Newshub she was aware the Ministry of Disabled People was over budget to the tune of $65 million.
The revelation comes after the announcement of serious belt-tightening on disability support, causing anger and protest.
"The way in which the ministry managed this fell well short of my expectations and I'm really committed to putting that right," said Whaikaha CEO Paula Tesoriero.
With no notice or consultation the Ministry for Disabled People - Whaikaha, restricted access to funding for disability support.
"The most important thing about the flexibility is that the disabled people and the carers get to choose how to use those funds," one person told Newshub.
Whaikaha receives about $2.3b in funding, which supports about 150,000 disabled people. And of that, about $500m is used for flexible funding - that's what's been restricted.
That money supports about 33,000 people.
But the ministry was set to blow its whole budget by $65 million.
"The budget often exceeded what was given and that's because about 3000 new people access supports every year and there's no additional funding that comes with that," Tesoriero said.
The minister says the fund was far too flexible.
"Individualised funding has been used to purchase lotto tickets, alcohol and tobacco," Minister Penny Simmonds said in Parliament.
"I think the minister needs to talk to disabled people first to find out how the money is being spent," one member of the disabled community told Newshub.
"We've been seeing funding used for a range of things that people choose to spend that funding on, that we are not necessarily appropriated for," Tesoriero added to Newshub.
Finance Minister Nicola Willis has promised a significant uplift in funding for disability in this year's Budget.
"Use this opportunity to review the settings so we're going into next year with greater clarity that we can serve disabled people and their families really well," Tesoriero said.
The disabled community hoping this time they're kept informed of exactly what that might look like.
29/03/2024 News Hub
By Amelia Wade
The boss of Whaikaha has told Newshub she was aware the Ministry of Disabled People was over budget to the tune of $65 million.
The revelation comes after the announcement of serious belt-tightening on disability support, causing anger and protest.
"The way in which the ministry managed this fell well short of my expectations and I'm really committed to putting that right," said Whaikaha CEO Paula Tesoriero.
With no notice or consultation the Ministry for Disabled People - Whaikaha, restricted access to funding for disability support.
"The most important thing about the flexibility is that the disabled people and the carers get to choose how to use those funds," one person told Newshub.
Whaikaha receives about $2.3b in funding, which supports about 150,000 disabled people. And of that, about $500m is used for flexible funding - that's what's been restricted.
That money supports about 33,000 people.
But the ministry was set to blow its whole budget by $65 million.
"The budget often exceeded what was given and that's because about 3000 new people access supports every year and there's no additional funding that comes with that," Tesoriero said.
The minister says the fund was far too flexible.
"Individualised funding has been used to purchase lotto tickets, alcohol and tobacco," Minister Penny Simmonds said in Parliament.
"I think the minister needs to talk to disabled people first to find out how the money is being spent," one member of the disabled community told Newshub.
"We've been seeing funding used for a range of things that people choose to spend that funding on, that we are not necessarily appropriated for," Tesoriero added to Newshub.
Finance Minister Nicola Willis has promised a significant uplift in funding for disability in this year's Budget.
"Use this opportunity to review the settings so we're going into next year with greater clarity that we can serve disabled people and their families really well," Tesoriero said.
The disabled community hoping this time they're kept informed of exactly what that might look like.
Day 11 - The Press - I shouldn’t have to fight for my rights’: Disabled community protest changes
I shouldn’t have to fight for my rights’: Disabled community protest changes
Click here to watch or listen to the video of interviews by Maddy Croad
By Maddy Croad THE PRESS March 29, 2024
A disability funding protest was held after the recent announcement by the Ministry of Disabled people, making changes to the funding.
Those in the disabled community said they were blind-sided by the changes and don’t know how they will cope.
Many disabled New Zealanders, carers and families gathered in Christchurch on Thursday, protesting the recent changes in funding made by Whaikaha, the Ministry of Disabled People.
The changes, which were put into effect without warning on March 18, meant many people were left unable to access funding for support such as travel, respite and physical aids like tablets and phones.
Jordan Langley, who organised the protest, was taken aback by the turnout of supporters.
Being legally blind himself, funding changes meant he can no longer get support to travel, leaving him isolated.
“I feel like I should be able to travel outside of my community. I cannot drive a car, I have to be independent.”
Lorraine Wiersman’s daughter Ella has cerebral palsy. Funding has allowed Ella to do things with her family such as walk the dog or visit the beach.
CHRIS SKELTON / The Press
Lorrain Wiersman’s daughter Ella, has cerebral palsy, meaning she has a full-time carer and a high level of needs.
She said they previously used Whaikaha funding to buy a machine that gets Ella and her wheelchair onto the beach. The funding changes mean the family can longer afford support like this.
“We’ve been living for the past week or so with uncertainty about how I can support my children now,” she said.
“When these people don’t do their jobs, their jobs go to us.”
Support worker Donna Clarke has been Ella’s support worker for 20 years. Everything she previously had covered by Whaikaha funding, is now gone.
CHRIS SKELTON / The Press
Ella’s carer, Donna Clarke, also attended the protest, holding Ella’s hand while she spoke.
She has been with Ella for 20 years, and now doesn’t know how Ella will cope.
“I was shocked, it was just out there and we never had any idea it [funding changes] were coming.”
Ella used funding for therapy such as mirimiri, a traditional Māori massage to reduce depression and anxiety, as well as an Ipad so she could connect with friends like “any other 26 year-old,” said Clarke.
“Her funding covered that, it won’t now.”
Many protestors called for Minister for Disability Issues, Penny Simmonds, to resign, largely based on how she made decisions regarding funding without community consultation.
The common theme of the protest was the resignation of Minister Penny Simmonds. “She's so far away from knowing what the needs are for people with disabilities,” said Wiersman.
CHRIS SKELTON / The Press
Similar demands were recently made by Labour Party leader Chris Hipkins, after National changed decision-making criteria to require cabinet consultation first.
“It is an extraordinary step and a massive vote of no confidence for Cabinet to intervene because a minister is failing to make decisions in her own portfolio ... Christopher Luxon should remove her as a minister altogether,” said Hipkins.
With a barrage of disabilities such as autism, epilepsy, PTSD and hip dysplasia, Nick Stoneman knows how important Whaikaha funding is.
He used to use the funding to get therapist appointments for his hip dysplasia, a defect he has had since birth, now he is forced to sit in pain.
“I’m struggling. If I don’t have my treatment I just have to suffer and that’s so wrong,” he said. “It’s 2024, I shouldn’t have to suffer, I shouldn’t have to fight for my rights.”
Protestors wanted funding changes to be reversed, and the Government to consult the disability sector.
CHRIS SKELTON / The Press
Like Hipkins, he and other protestors called for Penny Simmonds to go.
“We need her to resign from the portfolio, because we need a minister that actually wants to be there and wants to listen to our voices.”
“I don’t even think she knows what these guys need in their lives,” said Clarke. “Hopefully all this may make her think again.
As for Wiersman, who still remains in limbo over how her daughter can be supported, she had a clear message for the Government.
Many in the disabled community want an apology. If not, they say they will continue to make their voices heard. “We’ll get louder and we’ll get stronger,” said Stoneman.
Click here to watch or listen to the video of interviews by Maddy Croad
By Maddy Croad THE PRESS March 29, 2024
A disability funding protest was held after the recent announcement by the Ministry of Disabled people, making changes to the funding.
Those in the disabled community said they were blind-sided by the changes and don’t know how they will cope.
Many disabled New Zealanders, carers and families gathered in Christchurch on Thursday, protesting the recent changes in funding made by Whaikaha, the Ministry of Disabled People.
The changes, which were put into effect without warning on March 18, meant many people were left unable to access funding for support such as travel, respite and physical aids like tablets and phones.
Jordan Langley, who organised the protest, was taken aback by the turnout of supporters.
Being legally blind himself, funding changes meant he can no longer get support to travel, leaving him isolated.
“I feel like I should be able to travel outside of my community. I cannot drive a car, I have to be independent.”
Lorraine Wiersman’s daughter Ella has cerebral palsy. Funding has allowed Ella to do things with her family such as walk the dog or visit the beach.
CHRIS SKELTON / The Press
Lorrain Wiersman’s daughter Ella, has cerebral palsy, meaning she has a full-time carer and a high level of needs.
She said they previously used Whaikaha funding to buy a machine that gets Ella and her wheelchair onto the beach. The funding changes mean the family can longer afford support like this.
“We’ve been living for the past week or so with uncertainty about how I can support my children now,” she said.
“When these people don’t do their jobs, their jobs go to us.”
Support worker Donna Clarke has been Ella’s support worker for 20 years. Everything she previously had covered by Whaikaha funding, is now gone.
CHRIS SKELTON / The Press
Ella’s carer, Donna Clarke, also attended the protest, holding Ella’s hand while she spoke.
She has been with Ella for 20 years, and now doesn’t know how Ella will cope.
“I was shocked, it was just out there and we never had any idea it [funding changes] were coming.”
Ella used funding for therapy such as mirimiri, a traditional Māori massage to reduce depression and anxiety, as well as an Ipad so she could connect with friends like “any other 26 year-old,” said Clarke.
“Her funding covered that, it won’t now.”
Many protestors called for Minister for Disability Issues, Penny Simmonds, to resign, largely based on how she made decisions regarding funding without community consultation.
The common theme of the protest was the resignation of Minister Penny Simmonds. “She's so far away from knowing what the needs are for people with disabilities,” said Wiersman.
CHRIS SKELTON / The Press
Similar demands were recently made by Labour Party leader Chris Hipkins, after National changed decision-making criteria to require cabinet consultation first.
“It is an extraordinary step and a massive vote of no confidence for Cabinet to intervene because a minister is failing to make decisions in her own portfolio ... Christopher Luxon should remove her as a minister altogether,” said Hipkins.
With a barrage of disabilities such as autism, epilepsy, PTSD and hip dysplasia, Nick Stoneman knows how important Whaikaha funding is.
He used to use the funding to get therapist appointments for his hip dysplasia, a defect he has had since birth, now he is forced to sit in pain.
“I’m struggling. If I don’t have my treatment I just have to suffer and that’s so wrong,” he said. “It’s 2024, I shouldn’t have to suffer, I shouldn’t have to fight for my rights.”
Protestors wanted funding changes to be reversed, and the Government to consult the disability sector.
CHRIS SKELTON / The Press
Like Hipkins, he and other protestors called for Penny Simmonds to go.
“We need her to resign from the portfolio, because we need a minister that actually wants to be there and wants to listen to our voices.”
“I don’t even think she knows what these guys need in their lives,” said Clarke. “Hopefully all this may make her think again.
As for Wiersman, who still remains in limbo over how her daughter can be supported, she had a clear message for the Government.
“You do your jobs so we can do ours. We just want to be parents.”
Many in the disabled community want an apology. If not, they say they will continue to make their voices heard. “We’ll get louder and we’ll get stronger,” said Stoneman.
CHRIS SKELTON / The Press
Thursday 28 March 2024
Day 10 - Facebook - Dunedin Protest held today in the Octogon
Here are some photos taken from the Facebook Event page for the protest held today on the Lower Octogon in wet weather. I will add more information as it becomes available.
Day 10 - RNZ - Government thinks disabled 'add no value to society' - protester
Government thinks disabled 'add no value to society' - protester
RNZ 7:40pm March 28, 2024
By Georgie Hanafin
Disability funding changes have made people feel worthless and bullied by the government, a Christchurch father of four says.
Terry was among dozens of people who attended a rally at the Bridge of Remembrance after the Ministry for Disabled People blindsided families with sudden changes to purchasing rules for equipment, services and respite care.
Cabinet has since assumed responsibility for decisions on disability funding, while Labour has called for Disability Issues Minister Penny Simmonds to be sacked.
Photo: RNZ / Nate McKinnon
Terry, who did not wish to use his surname, described the move as a personal attack on the country's most vulnerable by an uncaring government.
He said the decision made people feel like they were at the bottom of the "social hierarchy".
"We add no value to society as far as they are concerned. We are not rich landlords. We don't own yachts. We are just the marginalised. We're just at the bottom.
"This is a despicable government. It does not care about these people."
Photo: RNZ / Nate McKinnon
An estimated 30 protesters also held a rally outside Simmonds' electorate office in Invercargill on Thursday morning, including Tracy Peters, who has paraplegia.
She said people with disabilities were discriminated against on a daily basis, and many at the protest were worried people would not understand the ramifications of the changes.
Mother-of-two Sarah Hinchey could not join the Christchurch protest because she was caring for her autistic teenage daughters. She said it was difficult for some people with disabilities to attend public rallies because they were sensitive to noise or big crowds.
Photo: RNZ / Nate McKinnon
Hinchey said the government should consult more widely with families.
"One of the major failings of the funding issue was the fact they never sought consultation," she said.
"They have admitted that and apologised, saying they'll do better in the future, yet they are doing nothing about it now to correct the situation. What they need is to truly listen to us - not just me and other caregivers, but a wide range of people, and especially the disabled people themselves. That is the bare minimum I would expect."
Hinchey said Simmonds was not suitable for the job.
Simmonds and Prime Minister Christopher Luxon have both acknowledged the changes were not communicated properly at the time. Simmonds has apologised for the way the changes were handled.
Terry was among dozens of people who attended a rally at the Bridge of Remembrance after the Ministry for Disabled People blindsided families with sudden changes to purchasing rules for equipment, services and respite care.
Cabinet has since assumed responsibility for decisions on disability funding, while Labour has called for Disability Issues Minister Penny Simmonds to be sacked.
Terry, who did not wish to use his surname, described the move as a personal attack on the country's most vulnerable by an uncaring government.
He said the decision made people feel like they were at the bottom of the "social hierarchy".
"We add no value to society as far as they are concerned. We are not rich landlords. We don't own yachts. We are just the marginalised. We're just at the bottom.
"This is a despicable government. It does not care about these people."
Photo: RNZ / Nate McKinnon
An estimated 30 protesters also held a rally outside Simmonds' electorate office in Invercargill on Thursday morning, including Tracy Peters, who has paraplegia.
She said people with disabilities were discriminated against on a daily basis, and many at the protest were worried people would not understand the ramifications of the changes.
Mother-of-two Sarah Hinchey could not join the Christchurch protest because she was caring for her autistic teenage daughters. She said it was difficult for some people with disabilities to attend public rallies because they were sensitive to noise or big crowds.
Photo: RNZ / Nate McKinnon
Hinchey said the government should consult more widely with families.
"One of the major failings of the funding issue was the fact they never sought consultation," she said.
"They have admitted that and apologised, saying they'll do better in the future, yet they are doing nothing about it now to correct the situation. What they need is to truly listen to us - not just me and other caregivers, but a wide range of people, and especially the disabled people themselves. That is the bare minimum I would expect."
Hinchey said Simmonds was not suitable for the job.
Simmonds and Prime Minister Christopher Luxon have both acknowledged the changes were not communicated properly at the time. Simmonds has apologised for the way the changes were handled.
Day 10 - Manawanui - Our Latest Comment on the Announcement
Weekly Update from the CEO - 28 March
By Marsha Marshall
...
Our Latest Comment on the Announcement
As we have emphasised all week, we think the changes announced recently were far too extreme, and we emphatically disagree with removing flexibility. We understand that the budget is limited, and public funding only goes so far, but we feel that the changes aimed at removing flexibility are the wrong strategy. They were also far too broad, extreme, and of course too sudden. We have always been staunch advocates for choice, control and flexibility in the way that disabled people and their whānau access support. This time is no different.
Since our inception 20 years ago, we have had a continuous relationship and discourse with Ministry of Health and now also Whaikaha for the purposes of improving Self-Directed Funding. Over the past two decades, we have continually provided suggestions for purchasing frameworks, as well as continually seeking clarity on purchasing guidelines and how to interpret them.
With the recent changes, we have asked again for clarity around specific areas that currently remain vague. We have also suggested that exclusions related to Respite like some item purchases and travel related costs are revisited so that you can all benefit from the form of respite that works for your situation. We believe that this feedback has been heard and is being considered. Currently mileage for support workers is back in (you CAN claim it again) for example, and also activities for the disabled person while in respite. We know Whaikaha will be reviewing the changes further so be sure to check the website, where they are published, and as soon as we are clear on things – we will communicate with you via this newsletter and the livestreams every week.
To keep track of the changes, the relevant Whaikaha webpage is here:
Whaikaha QnA (is receiving updates)
Whaikaha Purchasing Rules
We still do not have an update regarding the temporary nature of these guidelines or a timeline towards a new permanent framework for self directed funding. We have offered Whaikaha the chance to join us on a livestream and we hope the community is afforded that opportunity to engage directly.
By Marsha Marshall
...
Our Latest Comment on the Announcement
As we have emphasised all week, we think the changes announced recently were far too extreme, and we emphatically disagree with removing flexibility. We understand that the budget is limited, and public funding only goes so far, but we feel that the changes aimed at removing flexibility are the wrong strategy. They were also far too broad, extreme, and of course too sudden. We have always been staunch advocates for choice, control and flexibility in the way that disabled people and their whānau access support. This time is no different.
Since our inception 20 years ago, we have had a continuous relationship and discourse with Ministry of Health and now also Whaikaha for the purposes of improving Self-Directed Funding. Over the past two decades, we have continually provided suggestions for purchasing frameworks, as well as continually seeking clarity on purchasing guidelines and how to interpret them.
With the recent changes, we have asked again for clarity around specific areas that currently remain vague. We have also suggested that exclusions related to Respite like some item purchases and travel related costs are revisited so that you can all benefit from the form of respite that works for your situation. We believe that this feedback has been heard and is being considered. Currently mileage for support workers is back in (you CAN claim it again) for example, and also activities for the disabled person while in respite. We know Whaikaha will be reviewing the changes further so be sure to check the website, where they are published, and as soon as we are clear on things – we will communicate with you via this newsletter and the livestreams every week.
To keep track of the changes, the relevant Whaikaha webpage is here:
Whaikaha QnA (is receiving updates)
Whaikaha Purchasing Rules
We still do not have an update regarding the temporary nature of these guidelines or a timeline towards a new permanent framework for self directed funding. We have offered Whaikaha the chance to join us on a livestream and we hope the community is afforded that opportunity to engage directly.
...
Day 10 - Newshub - Government's disability spending changes 'threatens the lives of children', says public health expert
Government's disability spending changes 'threatens the lives of children', says public health expert
By Trent Doyle Newshub 28/03/2024
A public health professor has slammed the Government's change of rules for disability funding last week.
It comes after Whaikaha the Ministry of Disabled People published new rules on disability spending on its website last Monday, without consulting the community.
Following the announcement, the community urged Disability Issues Minister Penny Simmonds to rethink her "thoughtless and reckless" changes.
A public health professor has slammed the Government's change of rules for disability funding last week.
It comes after Whaikaha the Ministry of Disabled People published new rules on disability spending on its website last Monday, without consulting the community.
Following the announcement, the community urged Disability Issues Minister Penny Simmonds to rethink her "thoughtless and reckless" changes.
According to an AUT academic, one of the rule changes would block carers and patients from buying CGMs (continuous glucose monitors) using their disability allowance.
Public health researcher Dr Catherine Crofts said the Ministry's move is "incredibly short-sighted".
"CGMs are not consumer electronics… [but are] life-saving medical devices which enhance quality of care. And there is no other system that reduces parental or carer stress like CGMs."
CGMs are small patch-like devices that look like a patch on your arm - and they're often paired with automatic insulin pumps.
The technology monitors blood glucose levels continuously throughout the day and can send alerts to diabetics through a phone app.
Dr Crofts said the move by Whaikaha "threatens the lives of children" living with type 1 diabetes, but also "threatens the health of their parents".
"People with type 1 diabetes have very unstable blood glucose levels and sudden or undetected changes in their blood sugars can have life-threatening consequences," she said.
Extremely low blood sugar can lead to seizures, brain damage, or death within hours - known as Dead in Bed syndrome, Dr Crofts added.
Before CGMs became available, diabetics (or their caregivers) had to prick their finger and draw blood to check blood glucose 24/7.
Most people are younger than 15 when diagnosed, according to Dr Crofts, so their carers often have to manage their children's glucose levels - especially at night - meaning they're often sleep-deprived.
"CGMs are vital health monitoring devices for any person with type 1 diabetes but especially children," said Dr Crofts.
CGMs cost between $2500 and $5000 per patient.
"If this burden must be absorbed by the family, given the Government's crackdown, the cost will be significant for many families," she said.
But the cost isn't just financial.
"Without CGMs, carers of children with type 1 diabetes have a much greater risk of increased stress and poor sleep quality leading to burn-out, mental distress, fatigue, accidents, or employment challenges.
"The New Zealand Government needs to be increasing access to CGMs, not removing it."
She said removing access to some disability funding would only widen inequities and place more strain on whānau at a time when they didn't need it.
Penny Simmonds, Minister for Disabled People, said last week that Whaikaha could've consulted better with the community. She repeated her sorrow again on Saturday.
"Neither Whaikaha nor I are happy with the way this has occurred and so we are very clear that we will have to do much better in the future," she said.
And in an unprecedented move, Cabinet has told the Minister it will now sign off on the Ministry's major funding decisions, rather than the Minister herself.
Most people are younger than 15 when diagnosed, according to Dr Crofts, so their carers often have to manage their children's glucose levels - especially at night - meaning they're often sleep-deprived.
"CGMs are vital health monitoring devices for any person with type 1 diabetes but especially children," said Dr Crofts.
CGMs cost between $2500 and $5000 per patient.
"If this burden must be absorbed by the family, given the Government's crackdown, the cost will be significant for many families," she said.
But the cost isn't just financial.
"Without CGMs, carers of children with type 1 diabetes have a much greater risk of increased stress and poor sleep quality leading to burn-out, mental distress, fatigue, accidents, or employment challenges.
"The New Zealand Government needs to be increasing access to CGMs, not removing it."
She said removing access to some disability funding would only widen inequities and place more strain on whānau at a time when they didn't need it.
Penny Simmonds, Minister for Disabled People, said last week that Whaikaha could've consulted better with the community. She repeated her sorrow again on Saturday.
"Neither Whaikaha nor I are happy with the way this has occurred and so we are very clear that we will have to do much better in the future," she said.
And in an unprecedented move, Cabinet has told the Minister it will now sign off on the Ministry's major funding decisions, rather than the Minister herself.
Day 10 - DIsabled United - Invercargill disabled people organise to win
After the successful Invercargill protest today of 30 disabled people and their families, we all went to the Mainstreet Cafe on Kelvin St for a cuppa and a chat.
Over hot cups and nibbles, we met to determine our strategy for winning. Here are some of the notes.
Despite the weather we had a good turnout with about 30 people .It has been suggested that at the next event there are things like hot soup and cups, more blankets and chairs and definitely more signs. We also need to be louder with chants. Also an interpreter for the deaf community.
Action moving forward:
Possible next opportunity to protest again. I am unsure what this would look like, but maybe a protest picket outside the National Party on Kelvin St, followed by a march through the Esk St Mall.
To do this, we will need to contact:
Over hot cups and nibbles, we met to determine our strategy for winning. Here are some of the notes.
Useful ways to help
- Sign up for the monthly email newsletter
- Invite a speaker to your meeting
- Donate funds to help with printing
- Put up posters
- Help organise the next activity
- Send a message of support
Contact People for the Public
- Carolyn Weston QSM cgweston@kinect.co.nz
- Gordon McKewen gordonmckewengreens@gmail.com
- Melissa Corban Lisla35@hotmail.com
- Mike Peters 022 600 5006
- Tracy Peters tracy@redworks.co.nz
Notes from the protest speeches given
- 30 attended this time, aiming for 100 next time and 500 the time after that.
- We need to collect donations to pay for printing costs
- We need to build up the confidence of disabled people to stand up for themselves
- Add your name to the mailing list. Use personal emails rather than work emails to protect people
- We need to build our network to cover all of Southland, Gore, Winton, Riverton etc.
Despite the weather we had a good turnout with about 30 people .It has been suggested that at the next event there are things like hot soup and cups, more blankets and chairs and definitely more signs. We also need to be louder with chants. Also an interpreter for the deaf community.
Action moving forward:
- Emailing family, friends and local organisations and ask them to share the information about what is happening
- Email letters of concern to all Parliament members
- Radio spot with Jack on Southland community radio after Easter - Melissa
- Flyers to go out to the community via supporters
- Making sure we share the load amongst us all!!!
Possible next opportunity to protest again. I am unsure what this would look like, but maybe a protest picket outside the National Party on Kelvin St, followed by a march through the Esk St Mall.
To do this, we will need to contact:
- Council
- Police
- Mall Management
- Maori wardens
More (Mike)
- $31.80 was raised in donations to help with printing.
- 3 more disabled people volunteered to join the organising committee and take on responsibilities. This gives an organising committee of 8.
- A first committee meeting will be called next week.
- We are establishing direct contact with the leaders of other groups around the country so we can learn from each other and coordinate future actions.
- Please send copies of all support messages so they can go to the website.
- 2 union delegates and a FIRST Union organiser attended to show support.
- Somone offered to reach out to the churches and LGBTQ community.
Thank you to the Mainstreet Cafe owner and staff for their kindness.
Day 10 - The Southland Times - Disability community protest funding halt outside minister’s office
Disability community protest funding halt outside minister’s office
By Louisa Steyl
The Southland Times March 28, 2024, • 02:20pm
Mike Peters explains why Disabled United are protesting
Go here to watch video
https://www.stuff.co.nz/nz-news/350229398/disability-community-protest-funding-halt-outside-ministers-office
Disabled United organiser Mike Peters is urging Kiwis around the country to mobilise in protest of changes to funding that give many living with disabilities their freedom. VIDEO CREDIT: KAVINDA HERATH / STUFF
Members of Southland’s disability community say they will continue protesting until a pause on funding is reversed.
The group is urging people with disabilities to mobilise around the country.
People with disabilities want to be consulted on decisions that impact them.
“I’ve lost my sight, what else are you going to take from me?”
“Not here for a pedicure.”
“We shouldn’t be penniless but Penny-less.”
The message from those gathered outside Disabilities Minister Penny Simmonds’ Invercargill office on Thursday was clear: they were there to fight for their rights.
Around 30 members of Southland’s disability community picketed outside the minister’s electorate office protesting a pause on disability funding that’s essentially left them without the tools that give them independence.
Last week, Whaikaha, the Ministry of Disabled People, announced on Facebook that it was pausing individualised funding while it made changes to its purchasing rules and equipment modifications services.
The announcement came without warning, “blindsiding” many.
This individualised funding gives people with disabilities a set budget to pay for the things or services they need to live independently – recognising that this looks different for every person.
Members of Southland's disability community picketed outside Disabilities Minister Penny Simmonds’ office, vowing there would be more to come.
KAVINDA HERATH / SOUTHLAND TIMES
But Disabled United organiser Mike Peters said it was the coalition government’s error to fix.
“We need to focus on getting the cuts reversed, ” he said.
Carol Fearon was among the protesters who gathered outside Penny Simmonds’ office to speak out against funding changes
KAVINDA HERATH / SOUTHLAND TIMES
Speaking to the protesters, Peters said Disabled United was ready for a long fight and would not give up.
“Sometimes you start off small, but you keep going,” he said.
"We need to mobilise up and down the country. We will change this. We will win.”
Peters urged leaders to come forward, saying Thursday’s protest would be the first of many.
“We need to be doing this in Winton, and Gore, and Tuatapere,” he said.
“Disabled people live everywhere. Town and country.”
If changes to funding were needed, the Government should be discussing them with all members of the disabled community, Peters said, adding that those impacted by decisions should be involved in making them.
Green Party co-convenor for Invercargill and Southland Gordon McKewen read a statement on behalf of Green Party spokesperson for disability issues Kahurangi Carter.
“These budget cuts, implemented without consultation or consideration for those directly impacted, reveal a callous disregard for the well-being and autonomy of disabled individuals and our families,” Carter said.
Cabinet has approved some additional funding to the ministry until the end of the financial year, but Simmonds said this wasn’t enough to reverse cuts.
“Even with the additional funding, there is still a real risk of them running out of funding,” she said.
Media - The Press
The Press is a daily newspaper published in Christchurch, New Zealand, owned by media business Stuff Ltd. First published in 1861, the newspaper is the largest circulating daily in the South Island and publishes Monday to Saturday. One community newspaper-Northern Outlook-is also published by The Press and is free. Wikipedia
Owner: Stuff, Fairfax Media
First issue date: 25 May 1861
Circulation: 37,002 (2019)
Editor: Kamala Hayman
Format:
- Compact (weekday)
- Broadsheet (Saturday)
Headquarters: Christchurch, New Zealand
ISSN: 0113-9762
Reporters Maddy Croad
RESOURCES
Media - Radio Southland
The Community Access Media Alliance (CAMA) (formerly the Association of Community Access Broadcasters (ACAB)), also known as the Access Radio Network, is a group of twelve New Zealand community radio media organisations.
The stations were established between 1981 and 2010 and have received government funding since 1989 to broadcast community programming and provide facilities, training and on-air time for individuals and community groups to produce programming.
Radio Southland broadcasts on 96.4 FM in Southland. It provides training and airtime for people of all backgrounds to present live radio, including women, children, young people, disabled people and people from ethnic minorities.
The station brands itself as "locally-owned" and "the voice of the community", and broadcasts the daily Crave Rave Breakfast Show and other local shows. Its schedule also includes programmes from other Association members, and regular New Zealand music segments. Wikipedia.
Frequency: 96.4 FM
Programmes:
- SOAR (Jack Lovet-Hurst)
- Blind Citizens (Carolyn Weston)
RESOURCES
Media - The Conversation
The Conversation is a network of nonprofit media outlets publishing news stories and research reports online, with accompanying expert opinion and analysis. Articles are written by academics and researchers under a Creative Commons license, allowing reuse without modification. Wikipedia
Owner: The Conversation Media GroupAvailable in: English, French, Spanish, Indonesian
Content license: CC Attribution / No derivatives 4.0
Founded: April 2010
Founder(s): Andrew Jaspan, Jack Rejtman
Headquarters: Melbourne, Victoria, Australia
ISSN: 2201-5639
Authors: Hilary Stace, Sally Britnell
RESOURCES
Media - ODT
The Otago Daily Times is a newspaper published by Allied Press Ltd in Dunedin, New Zealand. The ODT is one of the country's four main daily newspapers, serving the southern South Island with a circulation of around 26,000 and a combined print and digital annual audience of 304,000. Wikipedia
Owner(s): Allied Press
Founded: 1861
Circulation: 26,435 (2021)
Editor: Paul McIntyre
Format: Broadsheet
Owner(s): Allied Press
Founded: 1861
Circulation: 26,435 (2021)
Editor: Paul McIntyre
Format: Broadsheet
Published: Monday to Saturday
Reporters: Mark John, Fiona Ellis
RESOURCES
Wednesday 27 March 2024
Day 9 - Disabled United - Invercargill Blind Woman speaks out
By Carolyn Weston
27/03/2024 Disabled United
Opinion
When I heard the announcement that Government was restricting disabled people’s access to fund equipment and how we can spend our Individual Funding, I was dismayed and confused.
Recently, I attended a forum about “Engaging Good Lives” informing us we now have self-determination and can make our own choices about our lives.
Last year, I purchased a special lens for my reading glasses and upgraded my screen reader for my computer with my funding allocation but today I can’t do this anymore.
For me, adaptive equipment and other blindness supports are equally important as my need for a wheel-chair or walking-frame. Government expects us all to interact with the internet and bank, pay bills, attend meetings, etc online but I and other blind people can’t do that without adaptive technology.
Let blind people take our rightful place in today’s society.
Carolyn G Weston QSM
Invercargill disabled woman
Day 9 - The Conversation - After seven decades of fighting, disabled people are still vulnerable when it comes to support
After seven decades of fighting, disabled people are still vulnerable when it comes to support
Hilary Stace, Te Herenga Waka — Victoria University of WellingtonThe recent Facebook announcement by Whaikaha – the Ministry of Disabled People on changes to funding for carers and equipment modification and services has put the media spotlight, once again, on respite care for families with disabled children.
Much of the discussions since have centred on the ministry’s NZ$65 million budget overrun as well as how the media announcement was made via Facebook. But parents leading the charge against funding cuts have also spoken out about the role respite care plays in their everyday lives.
Disability funding in New Zealand includes carer support and individualised funding respite.
Last year, the government paid for the equivalent of 4.9 million support hours. During the same period, 120,000 people accessed disability support services that included equipment and vehicle and housing modifications.
According to Minister for Disability Issues Penny Simmonds, the funding reset will take entitlements back to where they were before COVID. Labour has claimed this move will take the sector back 20 years.
Whether it is four years or 20 years, the government moves highlight just how fragile the position of families is when they rely on government support for their disabled children. But the current news cycle also puts a spotlight on how far the community has come in the last seven decades.
Out of sight, out of mind
In the mid-20th century, it was believed a disabled child pointed to faulty family genetics or even potential immorality. Disabled children and adults were usually hidden away in institutions. Their existence was often kept secret, even from siblings.
But in 1949, a group of New Zealand parents founded the Intellectually Handicapped Children’s Parents’ Association. These parents were fighting for facilities and support to keep their disabled children in their local communities. The main option at the time was institutional care.
The government set up the Consultative Committee on Intellectually Handicapped Children. In 1953, the committee recommended expanding what they referred to as the “mental deficiency colonies”. The committee recommended sending children as young as five to these institutions.
The committee decided permanent respite from the “burden” of caring for their children was best for families. Authorities assured the parents their children would be cared for and be “with their own kind”.
However, the current Royal Commission on Abuse in Care puts paid to those claims, with multiple survivors sharing testimonies about neglect and abuse in these institutions.
After two decades, the Royal Commission into Hospital and Related Services in the 1970s halted the unabated growth of these institutions. But it wasn’t until 2006 when the last one, Kimberley near Levin, was closed after protest led by disabled people.
The Disabled Persons’ Community Welfare Act (1975) provided some support. However it was still less than the support provided by the recently established Accident Compensation Corporation for those who were those disabled through an accident.
Deinstitutionalisation accompanied the growth of the disability rights movement with demands for autonomy and agency for disabled people. Inclusion rather than segregation became an aspiration and expectation for disabled people and families.
From NASCs to Enabling Good Lives
In 1993 disability support was moved from the purview of social welfare to health. The government introduced the Needs Assessment and Service Coordination (NASCs) system with narrow eligibility for those with intellectual, physical or sensory (vision, hearing) impairments. Autism was not eligible until 2014 and many neurodivergent conditions are still not covered.
“Carer relief” provided a minimal amount of money for out of home care, if suitable carers could be found.
The 2000s was a busy time for the disability community with the first minister and an Office for Disability Issues, a disability strategy and a carers’ strategy.
Disabled New Zealanders had significant input into the United Nations Convention on the Rights of Persons with Disabilities (2006). A select committee investigated care and service provision.
But families were still not paid for their carer roles – placing immense pressure on household budgets. After multiple legal challenges to the status quo, restricted provision for family funding was introduced.
In 2011, disabled people and their allies developed the person-centred principles of the Enabling Good Lives framework.
During COVID, families were allowed more support and flexibility in how funding was spent. In July 2022, the community finally got its own ministry, Whaikaha.
24/7 care and the need for respite
Care can include constant planning and managing daily routines including medical interventions and personal cares, feeding, lifting and transferring, remaining alert through wakeful nights, and to children whose behavioural responses can be unpredictable. Care includes trying to avoid situations of sensory overload, constant washing and cleaning, fighting for school access and against other barriers, finding and employing carers, learning new communication technologies and fighting for appropriate equipment.
There may also be also hostility or indifference from those who don’t understand. Families with disabled children are often also supporting other siblings and keeping a sometimes fragile family unit together with precarious finances. This care is often for the lifetime of the disabled person.
Respite funding offers carers a break from their caring routines, but also for disabled people to have a break from families.
Just as in 1949, parents want to care for their much loved children but the support and respite required varies from family to family as each disabled person is unique. Respite must be flexible, funded and timely. But now that flexibility has suddenly “paused”.
The Intellectually Handicapped Children’s Parents’ Association is 75 years old this year. Despite much advocacy, few gains are really entrenched in a way that can’t be taken away. Instead, support is fragile. The assumption endures that only “natural” supports – family and, in particular, mothers – are required for disabled children.
Those earlier battling parents would recognise today’s battling parents. Disabled children and adults are again second class citizens. But what this debacle has shown is that the “disability sector” in all its diversity, is united, strong and vocal.
Hilary Stace, Honorary Research Associate, Te Herenga Waka — Victoria University of Wellington
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Day 9 - Disabled United - News about the protest tomorrow at 10am
Hi everyone
This is a reminder about the peaceful protest we are holding at 10 am on Thursday, March 28th, at 22 Kelvin St, Invercargill, to defend our funding for disabled people.
- There will be some speakers, and we will be using a megaphone.
- Please email messages of support to put on our website for the media to quote.
- We couldn't find a deaf interpreter. But there will be a next time.
- Melissa has made placards. And you can make some and bring them.
- There will be people with yellow high-viz vests to help people and ensure everything goes OK.
- There will be sign-up sheets to get the names and contact details of supporters so we can get stronger over time.
- There will be a poster you can all take home and put up at your church, workplace, club, local shop, cafe, pub, agency, and car.
- People have been putting posters up all over town.
From our website
Disabled United spokesperson Tracy Peters was interviewed on the front page of The Southland Times about tomorrow's protest.
https://disabled-united.blogspot.com/2024/03/day-8-southland-times-funding-changes.html
The Southland Deaf Community executive and members sent a message of support.
https://disabled-united.blogspot.com/2024/03/day-8-southland-deaf-community-hear-my.html
Disabled people in Christchurch are protesting at the Bridge of Remembrance tomorrow.
https://disabled-united.blogspot.com/2024/03/day-8-disability-community-fights-back.html
Disabled people are protesting in Dunedin Octagon tomorrow.
https://disabled-united.blogspot.com/2024/03/day-7-dunedin-protest-on-thursday-march.html
Christchurch disabled people are interviewed in The Press.
https://disabled-united.blogspot.com/2024/03/day-5-disempowering-and-dehumanising.html
There was a protest in Auckland last Saturday.
https://disabled-united.blogspot.com/2024/03/day-5-auckland-protest-attacks-on.html
Rare Disorders NZ made a great statement.
https://disabled-united.blogspot.com/2024/03/day-5-new-changes-to-support-funding.html
Disability cuts are ‘devastating’, disabled Mosgiel mother says.
https://disabled-united.blogspot.com/2024/03/day-5-disability-cuts-are-devastating.html
A Wellington-disabled woman wrote a great opinion piece for RNZ.
https://disabled-united.blogspot.com/2024/03/day-4-why-we-cannot-let-disability.html
How you can help.
https://disabled-united.blogspot.com/2024/03/day-3-how-to-help.html
Please send us more information and photos to put on the website so we can get lots of support and win.
See you all tomorrow, Thursday, March 28, at 10 am at 22 Kelvin St, Invercargill. 😀
Mike Peters
-----------------------------------
Disabled United
https://disabled-united.blogspot.com
PO Box 902
Invercargill 9840
New Zealand
M 64+ 22 600 5006
Email mike@redworks.co.nz
Facebook www.facebook.com/NZMikePeters
------------------------------------------
Day 9 - The Southland Times - Families will pay the price for reckless tax cuts
Families will pay the price for reckless tax cuts
By Ingrid Leary
The Southland Times. March 27, 2024, • 10:00am
Ingrid Leary: “I have been inundated with messages from disabled people and their carers in the Taieri electorate.”
Hamish McNeilly / Stuff
Ingrid Leary is the MP for Taieri.
OPINION: Decisions that governments make about what to fund and what to cut tell us a lot about their values and priorities.
I have been inundated with messages from disabled people and their carers in the Taieri electorate who have been traumatised by the callous cuts this Government is making to their support.
Make no mistake: the sudden change to the criteria is nothing but a cut to services that are essential for the wellbeing of members of the community.
We have large numbers of people affected by this across the deep south, some of whom choose to live here because the flat terrain is more accessible for disabled and senior people.
It is patronising for the minister, Penny Simmonds, to say that those who look after their loved ones 24/7 need to be told what services are best for them.
These are people who in many cases do heavy physical lifting, experience sleep deprivation and need respite, physiotherapy and other services to support them with their essential care work.
To imply they are living the high life at the expense of taxpayers is deeply insulting – especially coming from the minister, who is supposed to be the champion of this community.
Decisions were made without consultation and communicated appallingly on a website, leaving people confused and distressed.
It is clear from Question Time in the House last week that the minister signed off the changes and did not seek bridging finance to support people’s needs. Instead of blaming the hard-working officials at the ministry, she should take responsibility and apologise to the disability community.
Meanwhile, Christopher Luxon and the National-led Government are continuing with their reckless tax cuts, no matter the cost – and it is families who are going to pay the price.
Kiwi households have been dealing with the cost-of-living crisis for some time now, and yet in the months since the three-party coalition came to power, we haven’t seen a single policy that can ease that pressure.Instead of half-price public transport or making most prescriptions free, the Government just spent an estimated $3 billion on landlords over four years and is still planning tax cuts that won’t benefit working people in the way that was promised.
This is about choices. At the same time as planning cuts to the school lunch programme and refusing to commit to reinstating flexibility with funding for disability support, the Government is choosing to prioritise landlords.
During the election campaign, economists warned National that its numbers didn’t add up. But the party ploughed ahead anyway, making irresponsible political promises despite the warnings. National told New Zealanders that its promises were affordable, and it could balance the books just by cutting back on “wasteful spending”.
This Government has rolled back workers’ rights, taken support out from underneath everyday Kiwis including some of our most vulnerable people, and reversed our smokefree laws – all while dishing out cash to landlords.
The Government’s priorities are backwards. When the prime minister doesn’t see the problem with taking $1000 a week he doesn’t need while telling others to save money, it’s clear where these decisions are coming from.
Day 9 - The Conversation - Accessibility remains an afterthought – how NZ’s digital health tools risk excluding people with disabilities
Accessibility remains an afterthought – how NZ’s digital health tools risk excluding people with disabilities
Alongside my career path from a PhD in computer science, work as a nurse and ambulance officer and now a university lecturer in nursing, I have become progressively deafblind.
As a result, I have personal experience navigating New Zealand’s health system, both as an employee and patient living with dual sensory loss.
My experiences provide me with a unique perspective on how important it is to integrate technology well into healthcare practices. Currently, accessibility is often lacking or insufficient, both for staff and patients.
My work focuses on bridging the gap between technology and nursing to make digital health accessible. A broader review of existing research confirms this need: accessibility is often an afterthought in software development, and digital health solutions are designed in a way that makes them inaccessible.
Accessibility must be part of early software design
One in four New Zealanders lives with a disability. Despite this significant portion of the population, digital solutions often overlook their needs.
For example, the YourRide taxi booking app’s launch last year has created difficulties for total mobility scheme card holders, with some struggling to access their taxi service equitably. With 89,000 individuals relying on the scheme in 2022, it is essential that they have equity in access to taxi transportation.
The app does not cater for total mobility card holders and a national taxi company is making them call by phone to confirm their status. This is further complicated by a malfunctioning text-as-taxi-approaches system, leaving those without app access no way of knowing how far away the taxi is without phoning the company.
This system has led to delays, multiple phone calls and missed appointments. Had the app been designed with total mobility card holders from the beginning, these issues could have been avoided.
The lack of emphasis on accessibility often begins at the early stages of software development, which leads to inaccessible digital health solutions.
While major companies like Apple and Microsoft have proprietary accessibility libraries, their usage is not widespread and considerably variable. Some accessibility test tools exist for web-based applications, but their implementation varies. And not all digital health solutions are web-based and guidelines for native applications are scarce.
It is important to integrate accessibility in the design phase of any project. One of the recommendations of a Digital Health Leadership Summit held in 2023 was that New Zealand should adopt a national strategy for accessibility in digital health, moving away from the fragmented approach.
Community engagement and collaboration are crucial to informing design in digital health and enhancing data collection and analysis. Projects such as Hira, which put in place the foundations for initiatives such as My Health Record, foster inclusivity, user-centred design, legislative compliance and equitable resource access.
Considering accessibility in the design phase and upholding ethical standards in digital health is essential. Flexible and adaptable solutions that cater to diverse access needs are necessary, along with clear information, navigation and personalisation to meet the specific requirements of individuals with disabilities.
Gaps between recommendations and reality
Unlike some other countries, New Zealand does not have legislation explicitly addressing or policing accessibility.
In 2022, the United Nations examined New Zealand’s performance under the Convention on the Rights of Persons with Disabilities and highlighted:
… a lack of recognition, across all government portfolio areas, that disability is a whole-of-government responsibility.
The UN also stressed that legislative and policy frameworks on disability should align with the Treaty of Waitangi to ensure active involvement in decision making and consultation with Māori with disabilities. It recommended a national strategy to increase awareness and promote respect for the rights and dignity of people with disabilities.
The discrepancy between recommendations and reality may be related to employment. Only 44% of people with disabilities are employed, compared with 69% of those without disabilities. This disparity in employment rates suggests a need for greater inclusivity and support for individuals with disabilities in the workforce.
Perceptions of disability
In healthcare, staff with access needs appear to be undeserved.
My first experience of this was when I worked as a nurse. I had disclosed my disability and was using a magnifying glass to check drug vials when giving medications. I had made no errors.
But the charge nurse nevertheless told me she no longer wanted me to use a magnifying glass as it decreased the public’s trust. If I had been quicker off the mark, I could have asked how a magnifying glass differs from reading glasses.
Her attitude raises important considerations regarding the perception of disability within healthcare environments. Her request to restrict the use of a tool that allowed error-free medication checks highlights a potential lack of understanding or sensitivity towards the needs of individuals with disabilities.
Last year, a German survey using sign language found that a lack of understanding of disability needs meant that deaf people were choosing not to engage with the healthcare system.
A similar survey in New Zealand could provide valuable insights into the barriers deaf people face. It could compare the effectiveness of digital versus face-to-face consultations and exploring the use of digital solutions such as closed captions in tele-health consultations.
Lingering undercurrents of discrimination
The historical treatment of individuals with disabilities within pākehā society was marked by a pervasive view of disability as a deficiency.
Rooted in the medical model of health which historically focused on deficits and impairments, the prevailing attitudes towards disability have often been shaped by societal norms that prioritise able-bodiedness. This has led to the marginalisation and stigmatisation of individuals with disabilities, who were seen as a deviation from the norm.
The legacy of these historical perceptions continues to linger. Despite advancements in understanding and awareness, an undercurrent of discrimination and exclusion prevails. This is reflected in the limited access to resources, opportunities and support systems available to individuals with disabilities.
People with disabilities have a long history of distrust in the health and disability systems in New Zealand. Improving education and training, building trust and promoting effective data sharing are essential for enhancing their care and experiences.
My goal is to advocate for this change. I want to ensure that digital health tools are designed with an equity lens, where disability, just like culture and gender, is given due consideration. This isn’t just about technology. It’s about reshaping our society’s approach to health, disability and inclusivity.
Sally Britnell, Senior Lecturer in Nursing, Auckland University of Technology
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Tuesday 26 March 2024
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.
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