Pedicures & massages

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.

You can read more here.

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

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