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