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Alacka Spooner

@alacka.bsky.social
196 followers 172 following 82 posts

Lover of baking & dogs. Posting about ME/CFS, disability, NDIS, current affairs (not mine!) and life. Pronouns: She/her Location: Australia

PostsRepliesMedia
Alacka Spooner @alacka.bsky.social · 21/11/2025
Here is your friendly reminder to back up any social media data you might want to keep. I just got sent to Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!
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Crikey @crikey.com.au · 14/08/2025
Exclusive | Speakers are boycotting the Bendigo Writers Festival after receiving a code of conduct from event organisers that required “compliance” with a controversial definition of antisemitism.
crikey.com.au
Writers boycott Bendigo Writers Festival for demanding 'compliance' with controversial antisemitism rule
Several notable speakers have already bowed out, with more set to follow, Crikey understands.
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Services for Australian Rural and Remote Allied Health @sarrahealth.bsky.social · 13/06/2025
Stand up for disability care! SARRAH urges the Australian Government to reject harmful proposed pricing changes. Read more at the link below sarrah.au/NDIS #ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky
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Alacka Spooner @alacka.bsky.social · 30/04/2025
Tomorrow I’ll reach the 190 week mark in my #NDIS home mods saga. It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.
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Alacka Spooner @alacka.bsky.social · 14/04/2025
I’m one of the lucky ones who had great drs in my corner and I could grasp what was needed from them so I got access. The process though (incl a rejection first time) made me a lot sicker. If it had been simple I’d have gotten access a year earlier and not gotten so severe which costs ndis more.
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Alacka Spooner @alacka.bsky.social · 27/03/2025
Neither the PM or the wannabe PM can say the name of our country. What other basic things can’t they manage? #auspol
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S|AM Connor @criprights.bsky.social · 11/02/2025
The NDIA spent thirty-seven MILLION fighting disabled people & their families in court to stop us getting supports in 2023-2024. In 2019-2021 they apparently lost 76% of cases at the then AAT. So much for that 'waste clock' and demonising the disabled. www.righttoknow.org.au/request/ndia...
righttoknow.org.au
NDIA expenditure on individual law firms for 2023-2024 - a Freedom of Information request to National Disability Insurance Agency
Please provide the following information about all law firms engaged by the NDIA in 2023-2024 for matters to which the NDIA was a Respondent at the Administrative Appeals Tribunal (AAT): 1) A list o...
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Alacka Spooner @alacka.bsky.social · 01/02/2025
Scary, scary times in the USA.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 31/01/2025
BREAKING: The Household Pulse Survey, a key source of Long COVID prevalence data, was among the CDC pages taken down today following Trump's order to remove “gender ideology” references. More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
thesicktimes.org
Breaking: Vital Long COVID data taken down following Trump order - The Sick Times
A key source of U.S. Long COVID data is now offline following a purge of information related to sexual orientation and gender identity ordered by President Donald Trump’s administration. The Household...
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Alacka Spooner @alacka.bsky.social · 13/12/2024
Independent review of Music & Art therapy commissioned. Changes on hold. Reports in March. #NDIS www.ndis.gov.au/news/10530-i...
ndis.gov.au
Independent review of NDIS funded music and art supports | NDIS
The NDIA is commissioning an independent review of appropriate NDIS pricing for music and art supports, based on available evidence.
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Alacka Spooner @alacka.bsky.social · 26/11/2024
#PwME what is something you like to do for your well-being when you hit overwhelm with all the organising, managing & educating you now need to do because of your #mecfs #disability?
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Alacka Spooner @alacka.bsky.social · 26/11/2024
Professional bodies for music therapists and art therapists are reporting their services are no longer going to be allowed to be funded by #NDIS. These evidence based therapies can produce great results. E.g. music therapy can be great for language development. chng.it/4f9S9v5yMt
chng.it
Sign the Petition
Save Music Therapy: Keep It Funded Under NDIS
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Alacka Spooner @alacka.bsky.social · 25/11/2024
Wouldn’t be nice if #NDIS participants & nominees could charge for all our NDIS admin work and the education we find ourselves needing to provide to so called providers?
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allyann @allyann.bsky.social · 21/11/2024
Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case "Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner." ♿️ #disability #NDIS www.abc.net.au/news/2024-11...
abc.net.au
'I'm not inserting catheters for fun, mate': NDIS participant's fight for funding leaves him furious
Adam Quarrell says being an NDIS participant is like "being in an abusive relationship". He's fighting to have funding restored in his care plan for catheters, without which he says he will die.
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Alacka Spooner @alacka.bsky.social · 22/11/2024
OT co had details of my Dx and AT I needed, added me to waiting list. Then they contact me & confirm that ME/CFS is my “primary disability”. Result is I’m off the list. I can’t help but think it’s my Dx not lack of avail. of an OT who can prescribe grab rails that is the issue.Auto email kicker:
Screenshot of grey text on black background.  It reads “We're sorry we're unable to support you at this time but we're pleased that you've been able to access services to help you reach your goals. “
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Alacka Spooner @alacka.bsky.social · 21/11/2024
I have experienced so much patient blaming, “poke you 5 ways and give up” or being told that I’m faking or it’s psychosomatic. Doctors don’t take responsibility for figuring out what’s wrong or how to help. That’s up to me apparently. And that’s not just with ME/CFS but with other conditions too.
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Alacka Spooner @alacka.bsky.social · 21/11/2024
My dog absolutely loves going to the vet. Here she is in the consulting room waiting for the vet to come in. Every passing shadow gets her tail wagging. If I got lots of treats every time I went to the doctor maybe I might feel the same way?
A small fluffy apricot dog with fluffy ears with rainbow harness and aqua leash sitting looking intently at a blue door in a clinical setting.
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Alacka Spooner @alacka.bsky.social · 19/11/2024
I think I’ve reached the age where all policemen look too young. Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis
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Jenny Meagher @jennmeagher.bsky.social · 16/11/2024
🗣️The federal Health Minister Mark Butler will speak at the Parliamentary Friends of #MECFS meeting 18th Nov 👩🏻‍💻 Pls join event via zoom to ⬆️ attendee numbers 🗳️ Politicians notice numbers 🛌Cameras can be off to allow resting Click on link to join zoom tinyurl.com/2zt7wbas
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Alacka Spooner @alacka.bsky.social · 16/11/2024
Wordle 1,247 2/6 🟨⬜🟨⬜🟩 🟩🟩🟩🟩🟩
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Alacka Spooner @alacka.bsky.social · 16/11/2024
Post a picture you took (no description) to bring some zen to the timeline
Photo of a pond with Ricky edges surrounded by lush green grass and trees with a bright red bridge crossing it.
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Kon Karapanagiotidis @kkarapanagiotidis.bsky.social · 13/11/2024
Humbled by all the kind people who’ve reached out to me asking how they can help us after the Asylum Seeker Resource Centre was robbed twice in past 48 hrs If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday
Image of property have being damaged or stolen at the ASRC.
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Tom Kindlon @tomkindlon.bsky.social · 22/01/2024
(New Zealand) 2-minute video piece plus text that is somewhat similar to a transcript "Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome" www.newshub.co.nz/home/new-zea... #MEcfs #CFS #PwME
Dunedin researchers reveal strong link between long COVID and chronic fatigue syndrome
EXCLUSIVE
11 hours ago
Kaysha Brownlie
Watch: Researchers have revealed a strong link between long COVID and chronic fatigue syndrome. Credits: Newshub

A group of Dunedin researchers have found a strong link between long COVID and chronic fatigue syndrome.
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🎃 Spooky Shoshana 🎃 @shoshana.bsky.social · 22/01/2024
“New study has doctors recommending you eat your weight in cheese every day.” Ugh, another medical study funded by Big Parma
A wheel of parmesan cheese with more parmesan cheese on top in a market

Naturpuur, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons
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Guardian Australia @australia.theguardian.com · 17/11/2023
The #SchoolStrikeForClimate protests in Melbourne have been huge as students take to the streets over the lack of government action in tackling the #climatecrisis. Follow live updates in our blog bit.ly/3SKofUM Here are some of the pictures coming in from the Melbourne #schoolstrike4climate protest
School strike for climate protest MelbourneSchool strike for climate protest MelbourneSchool strike for climate protest Melbourne
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Alacka Spooner @alacka.bsky.social · 05/10/2023
My first attempt at focaccia. It is a big reward for little effort kinda bread. Recipe from Alexandra cooks.
Two square focaccia breads on a cooling rack. One is golden with big dimples and a few bubbles & is topped with rosemary leaves, the other is topped with tomato, capsicum, feta, ham & cheese and is golden brown.
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Alacka Spooner @alacka.bsky.social · 24/09/2023
This little blue tongue visited me this week. First time I’ve seen one on my property.
Photo showing a small blue tongue lizard with dark brown and light brown stripes partially obscured by plants. The plants are a boobialla creeper, Bendigo wax with white flower and an unkempt lekodendron.
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El Gibbs @bluntshovels.bsky.social · 09/09/2023
This is really excellent from Evan Young. 'Why myalgic encephalomyelitis/chronic fatigue syndrome is nothing like everyday tiredness' www.abc.net.au/news/2023-09...
abc.net.au
Dee feels like a prisoner in her own body and wants more people to know the truth about her illness
People with myalgic encephalomyelitis, also known as chronic fatigue syndrome, say society has long underestimated and downplayed their struggles. They share what their lives are really like.
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