Ann Muir coaches young para athlete Matakorama Waipouri at the Para Lawn Bowls Commonwealth Games announcement. Photo: © Photosport Ltd 2017 / Alisha Lovrich
A disability advocate almost missed out on being able to have her say at a conference for disabled youth in Wellington, because her carer's flights could not be paid for due to recent restrictions on support funding.
Twenty-year-old Matakorama Waipouri - who has cerebral palsy - has spent the past few years advocating for young people with disabilities.
Her mum is her full-time carer, and Waipouri said she has to rely on her to help her eat.
In March, The Ministry of Disabled People announced new limits on what disabled people could purchase with their funding in March. This included no more accommodation or travel-related expenses for caregivers or parents.
At the end of the month, Waipouri - who lived in Auckland - was getting ready to attend an I-Lead conference at Parliament in Wellington.
The conference is an annual gathering for young people with disabilities to address challenges they face and work on solving key issues, before presenting submissions to policymakers, including the minister for disability issues.
"I've always been quite quiet," Waipouri said, "but in high school I became involved with youth council and found a passion for advocacy and realised I wanted to be a role model for disabled youth and be a voice for them."
Young Para Athlete Matakorama Waipouri receives a Borobi Mascot at the Para Lawn Bowls Commonwealth Games announcement. Photo: © Photosport Ltd 2017 / Alisha Lovrich
Waipouri said she was excited to have the chance to visit Parliament and discuss issues that she and others were facing, but the government's announcement to limit funding for carers meant she almost did not get to go
"My mum is my full-time carer and doesn't get paid very well for the support she gives me every single day of my life. The changes happened a couple of weeks before I was due to head down to Wellington and the plan had always been for my mum to come with me to help.
"She ended up having to pay for our flights and I paid for our accommodation."
Waipouri said she felt as though people with disabilities were being "pushed to the side lines" by the government.
"The funding changes made my blood boil to be honest, and I think it's a bunch of nonsense for them to say carers were spending funding on things like pedicures and cigarettes. I've seen how hard my mum works to care for me, it's hard work for carers.
"Who the heck are these people who get to tell us what our carers do and don't need?"
Photo: RNZ / Nate McKinnon
At the conference, Waipouri said the group were able to come up with 23 submissions for the government to look at.
"We're trying to make more possibilities for us, a lot of places still aren't accessible and I want the government to look into our community and what we go through more."
Waipouri said there needed to be more young voices in Parliament, especially a young person who had a disability.
"It would be good to have someone who could actually speak about what we go through in our daily lives and what issues there are".
Disability Issues Minister Louise Upston said the coalition government wanted the "best outcomes for disabled people and their families".
Upston noted an additional $1.1 billion over five years for disability services had been announced in the 2024 budget.
"We've set up an independent review to examine what can be done to strengthen the long-term sustainability of disability services, address operational risks that the Ministry for disabled people inherited and provide the community certainty around support services they can access."
Recommendations from the review are expected in the next few months.