Pedicures & massages
What happens next.
Yesterday, Whaikaha removed the ability for parents and caregivers to claim respite items for their carer support funding. Carer support funding is $80 per day, so $3.33 an hour a day for a carer, or $10 an hour if it’s just an eight hour day. You might get three days a year. You might get 30. Previously you could provide mileage and accomodation for your carer from those days. That has gone now. Without notice.
I have spent most of yesterday desperately trying to support parents who are suicidal over the sudden change of the only support they had.
I still have Covid but I wrote this…I apologise for typos.
I’ll tell you what happens now. Politicians and talking heads and people with no understanding will begin turning on parents of disabled children.
They’ll start saying - “I heard of a parent who went to Bali with her carer support! She got paid thousands to do a round the world cruise! They approved a designer wardrobe!” None of it will be true. It won’t matter.
Items that provided brief respite for those of us who haven’t slept in over a decade will be labelled “luxury items” or “frivolous” or “excessive”. None of it will be true. It won’t matter.
Then we will start having parents turn on each other - “I never spent my money on that and I don’t approve! If it wasn’t for them we would still have carer support”. None of it will be true. It won’t matter.
And the government and its supporters will be pleased. Because those parents barely had any energy and absolutely no time anyway to protest. How do you get out to do that when your child can’t be out in public? When every trip out of the house is an ordeal?
And now that they know nobody will stand with them - because they “want too much” and they want taxpayer money for “massages and pedicures”- why bother trying to fight this? There’s no point.
The voices that tell you there’s no hope are right. The voices that tell you it won’t get better are right. The voices that tell you nobody cares about you and your family are right.
And one mother in one kitchen will cry and she won’t stop crying and we will lose her. And a family will lose everything.
Will it matter then? Will we still be divided as we say “another suicide in our community, it’s so sad”.
The government won’t care but will you?
Or will you just be pleased you got ten likes on a post about how “these parents” want so much.
I believe people are good. I believe we want to help each other. I believe this government is the worst of us. But I believe if we can stay strong together we can make real change. I believe in us so much more than I believe in this government. Please check in on your friends who are so upset by the actions of this government - whether it’s the ones who have lost their jobs, or those who have lost the only respite they had. Please be there for each other. I believe in us.
Emily x
I work as a care worker for mainly autistic boys, and not only is this threatening the lives and lifestyles of the whānau I work with, it also threatens the livelihoods of hardworking care workers. We don't get massages and pedicures, just like the whānau we work with. We work hard to support people out in this world who aren't able to exist in the world without support. I see into the heart of the worlds these whānau carve out for themselves, and the funding that Whaikaha has provided in the past has really helped to enable better lives. How dare, how very dare the government cut support to people in most need? I see you, struggling with each day and just doing the best you can with what you have, and my heart cries out against this latest injustice. It cannot stand.
I just left this comment on a Newshub article
Meanwhile: disability support services suddenly throttled with little to no notice.
During Covid, iirc, purchasing with support funding was widened to include the purchase of items that could give a carer some respite from providing 24/7 care of their disabled dependent person. This was a welcome change for many carers who previously had been unable to get respite because it is so hard/verging on impossible to find a willing human carer to pay to do the care in order to access the respite, and the funding amount was so low (like, $10 per hour) so you'd have to top up the carer's pay yourself, and people who can't otherwise work because they're doing full time care of a disabled person just don't have that kind of money. Carers were also permitted to buy items like trampolines or sensory swings or venue annual passes to keep their disabled dependent occupied/soothed/entertained. The benefits were immediate: carers didn't have to do extra work/have the stress of trying to find a suitable, available substitute carer, and the items were often reusable enabling carers to getting a break more often (daily!!). Sometimes it even meant carers could actually sleep through the night for a change eg with technology minding the doors/child on their behalf.
Yesterday it returned to being for paying for people only. Though the amount of support funding "hasn't changed", because of the shortage of people in the substitute carer pool, this will mean less funding $$ will be spent. What a nifty way to save money.
So now some parents will be abandoned once again to 24/7 clean up smeared poo multiple times a day, be bitten/hit/spat on by their own child during meltdowns, judged constantly if they ever dare go outside their own home (or even when they're still in it eg when neighbours complain about the noise).
But you know, those people who own more than one property have it sooooooooo haaaaard, won't somebody please think of the landlords.
https://www.whaikaha.govt.nz/assessments-and-funding/individualised-funding/purchasing-guidelines/what-people-can-buy-with-disability-funding-purchasing-rules