Single mum of disabled daughter urges Louise Upston to 'listen' after disability allowance crackdown

The new Minister for Disability Issues has only been in the job a few days but is already coming under pressure.  

The Labour Party held a public rally on Sunday calling for Louise Upston to fully reinstate disability funding flexibility for carers and to apologise to disabled communities.  

Last month, the Ministry of Disabled People, Whaikaha, restricted what disability carers could spend their allowance on because it was about to blow its budget by tens of millions of dollars.

 For Tauranga mum Galatea Young, who looks after her disabled daughter Fiadh, it felt like a just-manageable situation was being made too hard to handle.  

"I've given my life already to my daughter and it's just restricted my life a whole lot more," Young told Newshub on Sunday.

Fiadh, four, has Angelman syndrome, a rare neurological disorder.   

"She has seizures, she has really big issues with sleep, she can't walk, she can't talk," Young explained.   

She used her allowance from the Ministry of Disabled People to pay for carers and nights off for herself, because Fiadh has trouble sleeping.   

"The way we previously used it was for hotel rooms so that I could have nights off where I could actually go and sleep."  

The funding restriction sparked protests because it was made with no consultation, and Whaikaha chief executive Paula Tesoriero later apologised.  

"The ministry managed this far short of my expectations," she told Newshub at the time.  

Earlier this week, a partial U-turn allowed money to be used for things like essential therapy tools and regional travel. But the damage was done, and the minister in charge, Penny Simmonds, was stripped of the portfolio.  

"She acknowledges there've been challenges there and she gets it," Prime Minister Christopher Luxon said on Wednesday.  

Four days in, and the new Minister for Disability Issues, Louise Upston, is already under pressure.  

Labour held a public meeting in Porirua on Sunday demanding funding flexibility for carers be fully re-instated.  

"A more flexible approach for funding was long overdue and I know that it's made a big difference," Labour leader Chris Hipkins told the crowd.  

Labour also wanted an apology from Upston to disabled communities for comments made by her predecessor.

Simmonds, speaking in Parliament last month, said: "Funding has been used to purchase Lotto tickets, alcohol and tobacco."  

Hipkins told reporters the comments were unacceptable.  

"The comments that Penny Simmonds made in justifying changes to flexible funding were wrong, they were very hurtful to the people who are working as carers."  

The new minister in charge was busy in her Taupō electorate on Sunday but told Newshub in a statement it was "clear the ministry has some funding challenges that need to be worked through".  

She said that was why the Government has committed to a funding review. 

Upston didn't give an apology but said: "The ministry has already publicly acknowledged the recent changes to flexible funding have been distressing and caused confusion for the disability community."  

Young said she didn't feel encouraged by the change of minister.   

But she had a message for Upston: "Listen, come spend time with us, and be part of our community, before you make your decisions."  

Because decisions by the Government thus far, have made life more difficult for the single mum of a disabled daughter.