Tāngata whaikaha in Otautahi/Christchurch are rallying together in the face of changes to disability funding for carers.
Ella Grant has cerebral palsy. All her major muscles are affected including her throat and tongue.
This means she can't swallow - so all her food, fluids and medicine are given to her through a tube.
Grant was born in Australia 26 years ago.
"They said she was blind and deaf and they didn't expect her to live," her mum Lorraine Wiersma said.
Grant's parents brought her home to Christchurch at the age of 2 to be surrounded by whānau.
"If she couldn't see or hear - we wanted her to feel us," Wiersma said.
Her whānau has never let Grant's disability define her. She was a pupil at Kōhanga Reo, attended her high school ball and recently went to pop singer Pink's concert
"I wanted Ella to have a full life," said Wiersma.
But, the reality is, Grant requires intense full time care.
Wiersma said it was really tough in the early days when her daughter was in hospital more often than she was at home.
"You swim or you drown."
Recent changes to purchasing rules by the Ministry of Disabled People/Whaikaha drew a backlash from the disability community.
Wiersma said navigating the system for support and funding is already difficult.
"This is a full-time job and I don't think people realise that."
In particular, there were fears about how carers and support workers would be impacted.
Ruth Jones from the kaupapa Māori based disability service Hei Whakapiki Mauri said tāngata whaikaha know it is vital to ensure carers are supported.
"I don't think the Government expected to have much backlash. That just shows how vocal we can be."
A recent Oranga Tamariki report estimates up to 87 percent of children engaged with their services have a disability.
"I don't want whānau to get to a place where they give up their kids to Oranga Tamariki," Jones said.
"I think of all the mamas and caregivers who are fighting and who are tired, [wondering] how long... they'll keep on doing it."
Lawyer and disability advocate Huhana Hickey told The Hui host Julian Wilcox a levy - similar to ACC - or an allocation of GDP for disability support was needed to fund support services for tāngata whaikaha and their carers.
"We need something that makes it financially sustainable. Draining the books does not help the community.
"It still works out cheaper to keep us in the community rather than to institutionalise us," Dr Hickey told Wilcox, comparing it to the hundreds of thousands of dollars it cost to keep a prison inmate for a year.
"We need to be fully funded in order to implement it properly.
"If we don't... we are going to see people going back into institutions, back into rest homes, back into care because whanau can't care on nothing."
She said the proposed cuts to support for carers were based on the actions of a few bad apples who had used the money to buy lotto tickets, cigarettes or alcohol. Dr Hickey said all carers' spending was monitored via Xero.
"So why did they not stop the people who were abusing the system rather than hitting all 50,000 of us that desperately need that money?"
Dr Hickey described the performance of Disability Issues Minister Penny Simmonds as "inadequate".
Simmonds was failing to respond to meeting requests from all groups working in the sector, Dr Hickey said.
"She has been a roadblock from day one."
