'We can do better': Mum of disabled 8yo calls for funding changes

Families are calling for more flexible disability funding as a review into the current support system continues.

Earlier this year the Ministry of Disabled People unexpectedly introduced new criteria around spending which sparked outrage from people within the disabled community and prompted the independent review to be undertaken.

The current system includes a self-directed support model, which was first introduced in 2004. It gave disabled kiwis more control over the help they received.

The Bloxham family — based in Balclutha — told 1News the individualised funding had been crucial for their eight-year-old daughter Emma who was born with a brain disorder.

While she still doesn't have an official diagnosis, her parents said doctors suggested she was on track to becoming paraplegic and that she would never crawl, walk, talk, attend mainstream school or move out of nappies.

"They pretty much wrote her off," said her mum Cindy Bloxham.

She's paid as Emma's full-time therapist, thanks to their individualised funding.

"If didn't have this support, this funding support, she wouldn't be where she is now."

She has described Emma as an active child, now able to crawl and walk with some assistance. She attends a mainstream school one day a week and is being toilet trained.

"Before I started therapy, neurologically, Emma was a newborn for up to maybe five years... I think neurologically Emma's probably like a three-and-a-half year old now.

"She doesn't miss a beat," Bloxham said.

1News visited their home to see the pair doing therapy, which happens for five hours a day from Monday to Friday.

"We've been working a lot on strong core for Emma, as she was born with no core.

"And in order to stimulate and strengthen your cerebellum, you need to work on your core."

The family work with a childhood functional neurologist in New York, who's helping them to retrain Emma's brain, building neuropathways.

Previously, some of Emma's funding has been able to go towards international travel to visit the specialist.

"We would pay for half of the flights and we got some funding towards that, or maybe towards the accommodation when we were travelling," said Bloxham.

"Unfortunately, we can't use any of it for this time round."

Bloxham said their funding can be used for a lot less now and said it was a shame there was "a lot of red tape".

"If a family wants to use their funding for therapy to help their child, that should be encouraged. Not lots of 'nos' and road blocks leading to it."

She said she is hopeful the review currently underway would change that.

"At the end of the day, the funding is there to enable disabled persons' life, and I think that if we all put our heads together surely we can do better."

Whaikaha, the Ministry of Disabled People said the panel working on the review was considering the appropriate level of flexibility within flexible funding.

It was also expected to make recommendations to address short term stability and longer term sustainability of the disability support system.

The Disability Minister's office told 1News "the review is being done in two parts, with the first phase informing what actions the government will take in this financial year to respond to the immediate cost pressures facing the disability support system."

"We're expecting a report back on that within the next few weeks, which will then need to go to Cabinet for discussion."

The full review will be completed in September.

When the self-directed approach was piloted, there were less than 200 recipients involved.

One the main organisations that distributes funding, Manawanui, has been involved since the beginning.

Chief executive Marsha Marshall said "traditional models of disability support often imposed a one-size-fits-all approach, stripping away personal choice and agency."

The Ministry said in 2008, the success of the scheme saw it expanded nationwide and now more than 14,500 New Zealanders access individualised funding.

Between 2019/20 and 2023/24 the cost of tripled from $120 million annually, to $335 million.

Bloxham said she has big aspirations when it comes to Emma's future need for funding.

"I went up to Manawanui last year... I said to them, 'mark my words, I'm gonna phone you one day and I'm gonna say 'hey guys, thanks for all the support, but we don't need this anymore because she's good,' and that's the goal."

Despite the tiring, physical work with Emma, Bloxham is determined for her daughter to make a full recovery.

"She's gonna go on to be a big Inspiration to so many other children like her in New Zealand.

"Anybody that knows me personally will tell you it's gonna happen. My child has come so far."

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