All Australians should be angry with the government. First they allowed private businesses to steal funding from disabled people. Now the government is directly ripping funding away from disabled people. Shameful. Shameless. #NDIS

Feeling big #DisabilityRage today about the #NDIS. This needs to be more of a thing. Disabled people are expected to be quiet, grateful, polite, cute, inspiring, pitiful, invisible. Their funding cuts are trying to make us small. Let's get big. Let's rage.

why don’t we just get disabled people and old people to fight each other to death and whoever wins can have funding

The idea that stability of condition precludes people from support is terrible: creates a revolving door of medicalisation and relapse / flare / episode

If the government doesn't want to support disabled Aussies, hand the #NDIS over to the disability community! I guarantee that we'd do a better job at making it a fairer, easier to use scheme that supported more disabled people with less fraud, admin and lawyers, and safer, higher quality services.

“We’re helping too many people with disabilities” is a hell of a line from a Labor government

Will lead to more abuse, neglect and exploitation. Many people already in SIL don’t get a choice of where and who they live with, now people won’t even have the opportunity of a reprieve. It does very much feel like return to institutionalisation. So much for phasing out group houses.

What I hate most about the announced changes to the #NDIS is the absence of care or respect for disabled people, their families and supporters. Ok, they want to reduce NDIS participants numbers. Q: Where's the plan to carefully transition their essential care elsewhere? A: Who cares! Yeet them.

#NDIS Participant First *again*: "We received 211 expressions of interest and had only 10 places available. All spots are now filled, and you were not selected this time." A huge thirst for users to give input. But not enough spots for demand or a representative sample of participants and carers.

Question: Why do you think you're a complex client? Me: Because I can't get anyone to understand that I have complex disability needs.

I'm not frightened of a disabled Black person calling out in distress. I am frightened of a gang of professionals dismissing that person's concerns, showing zero concern for their distress and labelling them a hassasser. For that could be me. That has been me.

This is about recent events in the Australian Autistic community. I'm only going to talk about ableism and devaluing of lived experience, and what I think needs to change. I do so to validate other people's feelings of "ickiness" around this event and to advocate for solutions.

If disabled people using the #NDIS is "undermining" it (Albo), are we not supposed to use it? Has it been designed to be un-useable? Was the intention of it to give disabled people a hard time? As a participant, it sure feels this way most of the time, especially now.

Ok. I'm back. I have things to say.

When explaining who I am, it's hard not to say "before disabling chronic illness, I was a psychologist, dancer, traveller, cook, yogi, swimmer. Now, I am sick with a side of disability advocacy." There are two lives, people, identity sets - before and after. After is murkier and harder to explain.

It's really hard getting people to understand that: Yes, I can physically do a thing, sometimes even easily in the moment but No, I cannot do the thing because of catastrophic consequences on my health afterwards that they'll likely never see.

Having disabling chronic illnesses is a constant existential flip flop between: "I must do everything possible to protect my precious, fragile health." And "F*** it, my life is painful and short, so I might as well eat all the pizza and dance while I can".

Disability Support Provider: "We support the NDIS 💜". Me: Not disabled people? 🤔 Well, that tracks.

I cannot get over how the NDIS does not fund insurance for mobility devices. One step further: Why don't *they* organise and offer comprehensive insurance for all funded equipment? It would be cost effective, help to ensure quick replacement of broken equipment and is the responsible thing to do.

NDIS Therapists: Pricing changes are the straw that broke the camel's back! We need immediate action! NDIS Participants: Welcome to the party! Can I introduce you to Plan Cuts, Lists of Supports, Funding Periods, Eligibility Reassessments, Pre-Payment Audits, ambush planning meetings, debts...

My meal prep worker cancelled their shift at short notice (COVID). With the new #NDIS Lists, I can no longer claim a rebate for smoothies and sandwiches bought from my local cafe because junk food is bad man. My partner is currently cooking meals for the week while at work and caring for me 🙃.

My new article about the WILD experience of using disability services for the first time.

PSA for people with #AddisonsDisease: If you have cold symptoms, it's worth doing a combo COVID/Flu/RSV RAT test. I've tested positive for RSV. I'd never heard of it before. It can cause pneumonia, fever, dehydration 🚩. I'm Sick Dosing, upping fluids, monitoring vitals, resting.

Me: Can an #NDIS provider charge me for a 6 hour arts program if I can physically/mentally only attend it for 2 hours? A disability carer and advocate: My daughter loves her day program (not even the same one). You can't expect every business to change for you. Go to somewhere else. I just can't.

Why disabled people sometimes need to use a "luxury" service that is usually for non-disabled people: 1) They are higher quality, safer, less exhausting and better value than using the disability equivalent of the same service. 2) There is no disability equivalent service available. Example:

all i want is to one day own a modest sized home in a walkable neighborhood and raise money for shelter animals. wear an outfit i like, walk to the grocery store, buy some nectarines, feed cats, and live in peace. just don't understand why achieving this is so hard

That some #NDIS participants are functioning well is not an indication of NDIS failings. They aren't fakers. Money isn't being wasted. It means the opposite - the NDIS is doing its job to support disabled people to live their best lives. Remove supports and they'll return to poor functioning.

Note to self: When a dentist says "you'll be in pain for a couple of days and discomfort for a week, take over the counter pain killers", I need to x10. Pain = Excruciating pain Discomfort = Pain that stops you eating normally Need pain killers = Need to request a script for codeine A week = 10

Festivals with no pass-outs or quiet spaces are inaccessible for many disabled people. We often need to go to the car or a hotel room to rest, to take a break from noise, lights, crowds, or do medical-care. It's expensive paying for a full ticket if we can only stay a short time without a break.

That I've heard multiple non-disabled people loudly state that help with gardening should not ever be a government funded support for disabled people is clear evidence that non-disabled people should not ever be responsible for deciding what funded supports disabled people can get #NDIS #Disability

Who's not in the room? Who's voice is not heard at the table? Disabled people who aren't Well connected Well spoken Well available Well experienced Well energetic Well looking Well

I'm still shocked at how many #NDIS STA/Respite Centres: 1) Are double-story. 2) Have unsupportive, non-disability furniture. 3) No mention of infection control. 4) Or what dietary requirements they cater for. 5) Childish, day-long, social-heavy activities. This is harmful to most disabled people

Acquiring a disability or becoming more disabled is expensive! Suddenly most of your furniture, appliances, clothing and sometimes your whole house is no longer suitable or accessible for your body. You have to replace things and buy more things just to maintain basic functioning and independence.

Is not numbing up from local anaesthetic during dental treatment an #Autistic #mecfs or connective tissues issues thing?

Is it really "dental anxiety" or is major dental work actually just another medical procedure that's unnecessarily painful and traumatic for patients?

Someone asked me how doctors need to treat my chronic illnesses differently because of my #Autism. The answer is person-centred, neuroaffirming care: I don't have a "standard" brain/body. So put down your standard assessment and treatment plans. Rewrite them based on my lived experiences and needs.

When doctors and healthcare professionals start a sentence with "most patients..." I need to stop listening. Being Autistic with a rare disease and multiple chronic illnesses, "most patients" is not remotely applicable to me. It is usually misleading and harmful.

The imbalance of disclosure information when you are a disabled customer is WILD. To find out if a hire wheelchair could be delivered in time for my appointment, I had to hand over my: - Weight and height - A copy of my driver's licence - Credit card details - Signed contract I just need a yes/no.

new gender neutral greeting just dropped

A flash of insight about the #NDIS. It (unconsciously) defines disability as incompetence. This explains why participants are: 1) Assessed on what they can't do (incompetence). 2) Given funding for capacity (competency) building. 3) Expected to need less funding over time (as competency ⬆️). 🧵

Addison's Disease is a drama queen who doesn't like being upstaged. "Oh, you are giving all your attention to a severe toothache? No, look at me! I give you: Nausea Headache Exhaustion Hopelessness Increased pain, everywhere Dizziness Tanking BP Feed me more steroids or die!" Complete jerk.

I recently presented at a hospital committee that #NDIS changes were restricting disability supports and increasing stress for disabled people. I warned this would lead to an uptick in healthcare demand. Guess who may not make it to the next meeting because they have proven themselves right? 🫠

There's an assumption that if you've made it to adulthood without knowing that you're Autistic then you don't need the diagnosis or support. This fails to recognise that many Autistic adults are hit with a growing pile of co-conditions. These interact with the Autism, often increasing disability.

As a disabled person, I shouldn't have to: - Go through a special application process - Pay extra - Complain - Campaign - Provide a medical report - Educate - Disclose my disabilities - Get an advocate - Go to a special session that's only on at 8am To do regular activities like everyone else.

Less: Disabled people being forced to apply and pay to prove their disabilities to non-disabled people to get accommodations. More: Non-disabled people accepting that disabled people exist, wanting them to be included, and therefore offering accommodations freely and easily.

Healthy non-disabled people often act like they are experts in chronic illness and disability. This is why they tell us to try yoga. They think they know and are better than us by virtue of being non-disabled. That 👆 is the definition of ableism. Those of us managing it daily are the experts.

I've seen discounts for students, seniors, teachers, nurses...why no sickness or disability discounts? Being acutely or chronically ill and/or disabled is damn expensive and impacts on people's ability to work. We like having and doing stuff perhaps even more so than others because life's shorter.

#NDIS logic: 1) You must get all your disabilities diagnosed, repeatedly talk about exactly how bad they are, and use disability providers who are frequently harmful. 2) We are defunding supports that assist you to cope with the trauma caused by point 1. This is not disability-related 🤔.

Chronically ill patient: I'm too sick to exercise. What should I do? Doctor: Have you tried exercise?

Another post. Another suffering. No content warning. These reminders unnecessary. I well know it. I live it. I live with fear of it. I fight the fear to keep living. Unfollowing.