Damus
Kōtare :tinoflag: profile picture
Kōtare :tinoflag:
@Kōtare :tinoflag:

A lover of music, literature, art, nature, community and many other fine things. A dad to two wonderful humans, and partner to another. From Aotearoa originally (pakeha, tangata tiriti) and re-settling in Australia for unsettling reasons. Known socialist.

Cover photo shows the sun setting into the Tasman sea on New Year's Eve from Piha Beach, West Auckland. Profile photo is a Kōtare (Royal Kingfisher).

#RareDisease #RareDisorders #Poetry #Architecture #Environmentalism #SocialJustice

Relays (1)
  • wss://relay.ditto.pub – read & write

Recent Notes

Kōtare :tinoflag: profile picture
Yesterday was hard. Woke up with atrial fibrillation and spent the day stressed and wondering if i should go to the hospital. Got called by the charity i'd done two interviews for to say that even though they loved me and i was amazing they were hiring the other person. Then cooked an amazing dinner for the family which i couldnt eat because I've got an endoscopy coming up.

Of course all of this inspired many hours of bleak introspection and second guessing of all my life choices. I'm trying to sit with disappointment today without sliding into despair. My heart at least has settled down so i can go for a gentle walk.

I'm worried about money, my girls, my long suffering hard working wife, and how to summon the resilience & perspective needed to change this state of affairs.

Sorry for the personal moan, I'm just feeling it keenly this morning.
Kōtare :tinoflag: profile picture
I've been involved with non-profits as a volunteer, in governance, and in leadership since about 2011. I've noticed something fairly consistent during that time:

Funding for sector support, general operations, sector capability, system-change, and advocacy is consistently denied.

Funding for one-off projects, direct support to a community, and even individuals needing crisis funding attracts a lot of money (comparatively).

This aligns with the idea of removing 'back-end' admin and prioritising frontline services. We've seen it in this government's approach to things such as healthcare.

But it also means that the system is brittle. Well-supported sectors are flexible and can grow, adapt, and improve, collaborative work can be coordinated at scale.

Funding frontline-only is all about treating symptoms and removes this collective perspective. In terms of optics it is simple and understandable to most people. It feels good and easy to grasp the benefits (and TBF it very often *is* doing good).

But it's also neo-liberal economics applied to social work - it fragments people into special causes, ensures the system is never challenged seriously, and erodes collective effort.

Anyway, just had a funding application denied for sector capability. Feeling a bit salty.

#Charity #NonProfit #Funding
1
JeremyJupiterJones :tinoflag: · 3w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpq2599437nazqk2hwmz03hrqqc6x9n3yyneezwn5t7prqvk3a8n8sq0ee8mx I took note of a largely overlooked fact in David Seymour’s recent announcement regarding increasing funding for Pharmac. The point that was largely ignored was he didn’t say inc...
note1sd76y...
Kōtare :tinoflag: profile picture
@nprofile1q... @nprofile1q... yeah, I know, ACT. The strings are a problem, and they play a role even when they aren't there - I recall meeting with Ayesha Verrall when she held the Health portfolio and she was adamant that more funding could not be made available for medicines because that would only benefit big pharma. That sounds sensible on the face of things (and I would have previously agreed to some extent) but it actually ran counter to the expert advice that increasing pharmac's budget (and adjusting their settings) would provide us with greater leverage in negotiations and result in better value and far more coverage for NZ'ers. We get good value deals thanks to Pharmac, but we also shoot ourselves in the foot just as often through delays, budget constraints, and poor processes.

As a bogeyman,big pharma influences our healthcare from multiple directions whether we like it or not. I think of them almost as a tidal force. locally, I guess, I'm interested in pragmatic forward movement even when some of those proposing it are...not my cup of tea.

As for eugenics? Yeah, don't mention health economics when you're standing anywhere near me. I am liable to begin shouting and waving my arms about in a dangerous way.
1
JeremyJupiterJones :tinoflag: · 3w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpq2599437nazqk2hwmz03hrqqc6x9n3yyneezwn5t7prqvk3a8n8sq0ee8mx nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpqu30qt9zmc0zt2ug3xajphserc0fedxnh62u4v9wphhje4yntujkqh5fh5u As someone who has relied on tax funded medicines since I was 9 years ...
JustSaying · 3w
"The ACT Party wants to increase the health budget spend on Pharmac by one percent a year, to bring New Zealand in line with Australia and closer to the OECD average." Tell me ACT got a drug company ...
Kōtare :tinoflag: profile picture
@nprofile1q... well Todd Stephenson is an ex Pharma exec so the pipeline is short.

However, if the funding increase goes hand in hand with deeper reform of pharmac (i.e. changing their governing guidelines to focus on saving lives over arbitrary cost efficiencies) then this is a good thing.
1
JustSaying · 3w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpq2599437nazqk2hwmz03hrqqc6x9n3yyneezwn5t7prqvk3a8n8sq0ee8mx cough it's ACT cough but yes that would be good don't expect it from ACT
Captain Jack Sparrow · 4w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpq2599437nazqk2hwmz03hrqqc6x9n3yyneezwn5t7prqvk3a8n8sq0ee8mx the steering wheel came off
Kōtare :tinoflag: profile picture
Feeling homesick for #Aotearoa #NZ today, especially my funky little town of Avondale. The news media is depressing, so please share your own personal positive stories from around the motu today for this fella stuck in a strange land.
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🇳🇿 Shayne Parkinson · 4w
nostr:nprofile1qy2hwumn8ghj7un9d3shjtnyd968gmewwp6kyqpq2599437nazqk2hwmz03hrqqc6x9n3yyneezwn5t7prqvk3a8n8sq0ee8mx a chilly day here in the Winterless North, but the fire is blazing cheekily. Every time I go out the back door I find the resident kererū flopping about in the kōwhai tree, chomping on...