The husband of a woman with motor neurone disease (MND) says the Government has left them feeling worthless and like free-loading baggage for wanting to make their home safe and wheelchair accessible.
Ally Barton is a former ICU nurse and one of the youngest in the country to be diagnosed with MND.
However her application for disability funding for new flooring in her home was declined, and she had to rely on the kindness and generosity of a local carpet company. Ally Barton can finally wheel herself about, safely and with ease. She has MND, diagnosed at just 34.
"It's such a devastating illness. It takes away your independence," said husband and full-time carer Paul Barton.
The old worn-down carpet and flooring was unsuitable and unsafe for Ally's powered wheelchair and walking frame. So, Paul applied for disability funding to replace it.
"We got turned down. Their reasoning was that we can't have any modifications funded that would increase the value of our property," Paul said.
He was gobsmacked.
"The last thing on my mind is the value of my house, it's the value of my wife," said Paul.
And here's where things get like a game of ping pong. Newshub went to the Ministry of Disabled People, which passed us on to an organisation called Manawanui, which is contracted to the Ministry and chaired by Sir Bill English, former National Party Prime Minister.
Manawanui is tasked with deciding how the Bartons spend their individual funding. They're the ones that said no.
But a Manawanui spokesperson told Newshub they simply follow the Ministry's strict new guidelines, which state you can't fund home improvements. And only the Ministry can override their decision.
In a statement, the Ministry of Disabled People said it's not privy to conversations between the Bartons and Manawanui. But it acknowledged how difficult things must be for the Bartons.
"Unfortunately the current Government are just viewing disabled people like baggage, that's how it feels to us," said Paul.
Ally, a former ICU nurse, no longer works. Paul had to quit his job to support her. Money is tight.
But they felt they had to get the flooring job done. So, they went to their local carpet store Flooring Xtra for a quote. And the owner delivered what the Government wouldn't.
"They certainly weren't after a handout or anything like that. We were just giving them a quote. And then we found out the circumstances and decided to try and help them," said Richard Low, managing owner of Flooring Xtra Ferrymead.
The carpet and laminate flooring were donated, and the tradie contractors offered their time for free. This would normally be an $8000 job. But it cost the Bartons nothing.
"We were completely blown away; we did not expect this at all. It's sad that it has put us in the position to rely on the kindness of others to help us out," Paul said.
Ally is now blogging about her MND experience and Paul is petitioning for MND to become a 'notifiable disease'.
Every case would have to be reported and the data could be used to inform a public health response and medical research.
He hands in the petition this week - and his message is simple.
"Stop villainising people with disabilities or the people who care for them," Paul said.
