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Mother of severely autistic child writes harrowing letter to Disabilities Minister Penny Simmonds

Warning: This article discusses suicide. 

A mother of a severely autistic child who wants to remain anonymous has a written a harrowing letter to the Minister for Disability Issues telling her the decision to limit access to a fund for disabled people has left her unable to get respite and considering taking her life. 

She is one of many carers who are distraught at the changes. 

Disability Issues Minister Penny Simmonds knew about the decision last week - but did nothing. 

On Wednesday, the minister and the ministry clarified the fund can still be used for essential tools and regional travel. 

"We've gone from a completely inflexible situation to one that's... open-ended and it's not impractical for us to want to have some conditions and regulations around that," Simmonds said. 

But there's still a question mark about respite care, leaving the mother of a severely autistic child distraught.  

In a letter to the minister, she said: "I spend my days being verbally and physically assaulted. I have non-stop noise to manage every single day all day.  

"Every person in our home is traumatised. My own autistic brain is in absolute burnout and subsequent PTSD has me in a very delicate position." 

A few months ago, the only solution she could see was to take her and her child's lives, the mother said, which would give her family life insurance to keep their home. 

No carer has been willing to manage her child and they have no family support. 

The funding had given her hope her situation was survivable because she could have regular nights away from home to recharge. 

"All of our funding is now obsolete for our circumstances is devastating. I don't use that term lightly, the grief and turmoil is huge," she said of the news on Tuesday .  

"The news is so fresh, I am shaken to my core and I can only wonder just how long it will take before I am again in the position of believing the only solution is to end two lives." 

Newshub put this to Simmonds.  

"Each person with a disability is assessed," the minister said. "They are given a full assessment, so those individual situations have to be looked at." 

Another mother, Michelle Sharp, has also spoken about how appalling the changes were.

"In an already broken system, when there are so many things that aren't working, this was the one thing that really was. Please don't break it," she said.

"The minister knew about the changes on Thursday and yet didn't think to consult anybody."

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