this post was submitted on 21 Mar 2024
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I'm one of the parents of a child that qualifies us for this funding. It was fairly challenging for us to find an angle to use it prior to the changes, and after them it is very close to useless.
The kids covered by it often can't leave their homes without a huge amount of distress ( think of the worst meltdown your neurotypical kid has ever had ). Parents of kids at the higher end of the autism spectrum are often being hit and bit every day. Finding anyone who will deal with this for the $80 a day respite funding is often incredibly unrealistic.
The single brain celled analysis of the minister complaining about pedicures being paid for with respite money annoys the hell out of me. Having a kid at the extremes of disability is a life sentence. It is a marathon rather than a sprint. Your kid might never smile at you or thank you ever for a life time of care. If a pedicure is what will fit in the hour and a half window that you can arrange for the your kid to be safe, and it keeps you going for the next couple of weeks I think is an absolute bargain.
Stuff that might seem frivolous on its face like buying lego or games might be the only option for some parents to get a couple of hours without needing to wrangle their kids.
We have a great kid that is towards the more high functioning end of the autism spectrum and are in a financial position where it doesn't matter that much to us. I feel horribly bad for anyone who was making good use of this funding and now are facing having to go it alone again.
What gets me is there are people like you who are just pushed too far and can't do it. They relinquish their child to state care. And that costs the govt millions of dollars more than just funding parents and caregivers.
Unpaid caregivers save the govt billions of dollars, why is it trying so hard to make their lives worse?
That is a great point. Even if you look at it from a total psychopath accountant's point of view, chucking a few scraps at the parents to keep them from totally giving up is a tiny fraction of the cost of the alternatives.
When our child was diagnosed the fairly bulky information pack that the DHB gave us had this depressing sheet at the start with a foreword that said you need to rethink any goals you might have had for your child. In the same section there was something to the effect that more than half of marriages where a child has this diagnosis end in divorce.
I was freaking amazed they would put that in writing ( even if it is true! ). I told my partner that she would be best to skip the start and look at the rest of the information.
Especially when you consider a great many of them are parents looking after high-needs adult children or spouses looking after adults. I know some of these and it's really a mammoth task. The disability care we have now is much cheaper than institutionalising those being cared for.
This is what scares me about this govt, it's not just being cold "psycho accountant" it's more like a psycho who failed accounting and just wants to break things and hurt people.