Sowing the seeds of distrust against carers
The power of Penny Simmonds words on the disability community 🤬
Well, I just sat down to do my fortnightly claim for my daughter’s Individualised Funding (IF) expenses. I had three items to claim for, and we are well within our budget allocation for the year.
They are items that reflect EGL Principles, they are disability supports and not able to be funded elsewhere, but as of 18 March, all three items are now regarded as exempt.
Self care for carers has effectively been erased from our support package, though the carer and their needs for self care have not changed.
Now I’m really regretting not claiming them earlier, before the eyes of the nation fell on us carers and our financial matters. I have nothing to hide, they were all valid purchases, but to be 100% honest with you, I’m too scared to claim them now. It’s the fear of being judged, and the feeling of self doubt of whether I’m worthy of respite in the eyes of others.
I’ve spent the last eleven days in various states of disbelief, grief and hysteria. As the fog of anxiety started to clear, and the sound bites from Minister Penny Simmonds during parliamentary question time got progressively more ridiculous, I somehow found humour. I even used my remaining scraps of energy to make some social media content - to show solidarity with other parents and carers, to keep people talking about the issues, and to support my own mental wellbeing, which, to be quite honest, needed lifting.
Penny Simmonds use of words as an MP hold power, and it doesn’t matter how many of us parents and carers, disabled people and allies publicly condemn her parent/carer-shaming rhetoric, the damage is done. The trust is gone. Never to return.
She has sown the seeds of distrust of parents and carers like a dandelion dispersing its seeds across a field. As much as people are offended by her attacking words, a subset of the public are undoubtedly questioning what parents and carers are actually spending disability funding on. Hell, if I thought people were misusing taxpayer funding to buy a $28 triple dip, a 12 pack of Cody’s and a carton of Pall Mall, I’d be livid too!
But she attacks with her words, with no context. Why did someone claim an overseas trip? Was it because they fancied a tropical island holiday, or is their support network overseas? Was the massage claimed with oils and hot stones, or was it a sports massage for a carer who has to help a disabled adult in and out of their wheelchair? Was the lotto ticket and ciggies an actual purchase claim, or was it purchased with wages a carer earned, paid by IF? There’s a huge difference, and perspective is everything.
For me, I suddenly feel the urge to tell people what I’ve spent IF on in the past. It’s none of their business, and sometimes they don’t even have to ask - but I feel like we are being audited by public opinion, thanks to the Minister implying that we are misappropriating disability funding!
I also feel the urge to explain to everyone how IF works - because Minister Simmonds hasn’t bothered to do so, to date - and actually it’s important. We are spending money already approved in an annual budget. It’s broken into fortnightly amounts and tracked so we know how to stay within the budget till the end of the period. You didn’t need to know that, I typed it without thinking 😂 But when a politician implies we are overspending and blowing out Whaikaha’s budget, it’s not technically true. Flexible purchasing guidelines allowed us to spend our allocated budget more easily, on things that make a real difference in my daughter’s life. There should be no shame attached to that.
So yes, I feel obliged to explain all of this because Minister Simmond’s has made us all look dishonest and wasteful. And that hurts.
Days later, when she doubled down and added that carers had been claiming for lotto tickets, alcohol and cigarettes, we all laughed, especially knowing how heavy-handed the gatekeeping is on purchases, you can’t simply claim for items without giving proof of purchase and a wordy explanation of why it is a disability support.
…but you know there will be people who are taking her word as bible, because she is a Member of Parliament, a representative for her community, and a parent of a disabled adult daughter.
When she offers no concrete data to back up her claims, some will question her, others will blindly believe her. She is unrepentant in her strong use of language against parents and carers, which some will see as arrogant, others will take as proof of her conviction.
Plenty of brave parents have shared their stories in the media, giving examples of their lived experience as a carer. They talked about their need for funded supports like respite and self care.
Even during a recession and cost of living crisis, empathy and understanding are free. Yet our Minister of Disability Issues has continuously shown nothing of the sort. She said to Newshub on 20 March:
“What we are saying is prioritise the funding for people with disabilities. Some of the funding has been going to carers - that has to be pulled back and prioritised to the disabled person."
As a parent and carer, I don’t disagree. If there is a limited amount of funding, of course disabled people should be given priority. But Minister Simmonds made a conscious effort to drag parents and carers through the muck in the process of making this announcement, and I won’t ever forget that.
Of all the things included in the pile-on this week, it’s the weight of public perception that falls heaviest on parents and carers. Minister Simmonds must take responsibility for this. It’s her words, her insinuations that have landed us in this unfamiliar and unfriendly place.
We know that people look on us with unnecessarily sad and piteous eyes sometimes - thats on them, not us. But when they look at us and doubt our dedication and motives as a parent, it hurts.
So as I sit here, looking at my empty claims form, thinking of the things I can no longer provide for my daughter, I feel sad and fearful of the future in a way I haven’t experienced before.
I wouldn’t wish a job loss on anyone, especially during a cost of living crisis, but I honestly think Penny Simmonds is not the right person to be leading disabled people and their carers into the future in Aotearoa.
Arohamai dear readers, I was so focussed on choosing whether it should be mistrust or distrust in the title, I completely missed the sewing/sowing typo 😠That one will haunt me at 4am for sure!!!
Yep but I have zero qualms about seeing her lose this portfolio . Shes beyond reckless and has treated the people she purports to represent wrongly, and with added insult to injury. Shes GOT TO GO