When: Friday, 11 October, 12 noon.
Location: Civic Square outside the new WDC building on Rust Avenue, Whangarei.
The Tai Tokerau EGL Leadership Group is organising a protest about these radical draconian changes to our Disability sector.
For more information: Contact Tessa tessa@tiaho.org.nz
Last Updated 02/09/2024
RESOURCES
By: Jonny Wilkinson
The NZ Herald: 05 am, 31 August 2024
THREE KEY FACTS:
Whaikaha - Ministry of Disabled People, will have its functions dramatically reduced, with responsibilities for commissioning services for people with disabilities passed to the Ministry of Social Development by October.
Disability support services comprise the bulk of Whaikaha’s $2.6 billion budget. It is the third time in half a decade commissioning services will move ministries.
MSD will establish a new department for commissioning disability support services, which will report to a new deputy chief executive.
Jonny Wilkinson is the CEO of Tiaho Trust - Disability A Matter of Perception, a Whangārei based disability advocacy organisation.
OPINION
The 80′s gave me a taste for what is now regarded as “retro” music and this week I have been slightly obsessively listening to Public Enemy’s song Fight the Power.
Public Enemy changed the hip-hop scene into a vehicle for political expression. Fight the Power is a seminal protest anthem blending aggressive beats with politically charged lyrics. It is a call for action.
On Thursday last week, the coalition Government announced plans to strip Whaikaha, the Ministry of Disabled People, of its responsibility for delivering support services, shifting it to the Social Development Ministry.
Whaikaha will be downsized into a smaller, standalone department focusing on advocacy and policy advice. Just two years after its establishment Whaikaha is being massively scaled back following the findings of an independent review.
The review, led by Sir Maarten Wevers, found the delivery of support services was inconsistent and hampered by how Whaikaha had been set up.
When I heard the announcement, I was gobsmacked. I was still in the process of recovering from the announcement in March regarding the restrictions on Flexible Funding.
In one announcement Whaikaha the Ministry of Disabled People has been dismantled.
The ministry is something that disabled people have fought and lobbied for, for decades, wanting our own ministry that would preside over disability services and advocate for disabled people’s rights in New Zealand.
Yes, it has had a few teething problems but there is no reason to kick it into touch. Whaikaha was developing a strong sense of disability culture with nearly 40% of its staff identifying as disabled.
By shifting the delivery of Disability Support Services to the Ministry of Social Development the Government is basically saying disabled people are not up for the job.
By scaling Whaikaha down into a toothless advisory and monitoring entity, it sounds much the same at the Office of Disability Issues which did effect much change over the years. What the difference will be between them? No one seems to know.
This has really sent the disabled movement in New Zealand back decades. Other concerning aspects of the announcement was a pause on the Enabling Good Lives roll out and Indicative budgets and monitoring of Needs Assessment and Service Coordination organisations (NASCs) being reinstated.
Over 30 years ago, Disability Support Services sat in the Department of Social Welfare. These were then trundled over to the Ministry of Health and for decades disabled people have felt like the poor relation of the monolith that is Health, until 2 years ago when we finally got our own ministry. Now things have gone back 30 years.
The Enabling Good Lives approach attempted to put disabled people and their families in control of the services and supports they needed, which was starting to address the power imbalance between the Needs Assessment and Service Co-ordination (NASC agencies) and disabled people.
The announcement has clinically put the power balance back in favour of the NASC, giving them the mandate to be gatekeepers and controllers of any supports available.
The decision to strip Whaikaha of Disability Support Services wasn’t even in the Independent Review!
Was it a purely political decision to dismantle what the former Government had done? I asked Mojo Mathers, former Green MP, and the first (and only) DEAF member of Parliament and now Disabled Persons Assembly CEO, what her take on this was. Mojo commented that, “The downsizing of Whaikaha with no consultation with disabled people has hit our community hard”.
“Disabled people want more choice and control over their lives, not less. Decades of underinvestment in disabled people has let to poorer outcomes for our health and wellbeing. This can be turned around. To do this, Government must engage properly with disabled people going forward.”
Disability support has been grossly underfunded for decades. It isn’t the fault of Whaikaha, the issue is with the fundamental funding model of disability support in NZ.
We need a funding model more similar to ACC, as the disparity between ACC-funded disability supports and Whaikaha (now MSD-funded support) is staggering.
ACC offers gold-plated services in comparison. Australia has had a National Disability Insurance Scheme for years, and while it has had its own issues, it is serving its disabled people well.
I contacted Huhana Hickey, an old friend and disability rights Lawyer and asked her to give me a comment on last week’s announcement of changes to the disability sector. Here are her words:
“In a nutshell, we are back to the 1990′s. For how long? I don’t know but we can consider this is going to be us for two more years minimum and longer if we don’t demand change and stand up against the discriminatory, unethical inequitably designed decisions made around our lives.
“I know it’s hard, believe me I was meant to retire by now and I can’t. Why? Because unless we make a strong and collective stand against the abuse we are receiving from this coalition, then we won’t get change and we remain invisible. Sometimes we have to do the tough to be heard.
“I can’t do this alone, a few of us can’t do this without ALL of our community standing beside us, with us, All of us”
The Tai Tokerau EGL Leadership Group is organising a protest about these radical draconian changes to our Disability sector on the 11th of October at 12.00 in the Civic Square outside the new WDC building on Rust Avenue. For more information contact tessa@tiaho.org.nz
Last Updated 10/09/2024
Resources
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.”
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.