Thread: My ‘disability’ rage is new

Here we go #DisabilityTwitter I sent this in to the @NDIA trying again to get my About Me section updated.
It says when my rage emerged.
Along with crap – not written by me – it says I have a cat. My Snowy died in Jan 2021. I've had about 4 plan renewals since.
This anger is new. pic.twitter.com/wSULNGWyKE

— Karletta Abianac ✏📖 (@KarlettaA) April 21, 2022

Here we go #DisabilityTwitter I sent this in to the @ndia trying again to get my About Me section updated.
It says when my rage emerged.
Along with crap – not written by me – it says I have a cat. My Snowy died in Jan 2021. I’ve had about 4 plan renewals since.
This anger is new.

Part of the recent document I sent them. I wrote this one as if I were a social worker. Speaking as best I could like a Disability Sector employee.

March wasntold I need to fill out a Change of Circumstance form. Need help w that. CoS is $100hr. Some w 60 clients ea apparently

Oh gosh. I’m sorry. I didn’t tag the NDIA. It’s someone called Nadia apparently. Cannot be the first one who did that .

Ok. Still awake. Possibly because I drank some Coke this arvo for first time in a couple of weeks. Lots of Aus news am going through too.

Reasons why changing my about me info was deemed not relevant to some people:
It looks better if you have friends.
If your cat is dead, why write that he’s dead?
You’re not agoraphobic, you’ve gone out heaps since you were a teenager.
Take the anger out and people will read it.

Not relevant *flips page* Not relevant *flips page*
(They – CoS) don’t need to know anything about you.
No one reads specialist reports. Only other specialists.
The NDIS doesn’t read anyone’s about me.
They don’t care about that. What’s next.

We want you to be independent and know you do too.

Anything medical (eg: OT assessing and helping me access the health care system) the NDIS won’t touch.

They (NDIS) don’t care about Human Rights (true).

You’re entitled to x. YOU don’t need that.

#DisabilityTwitter

Well (what do you expect – no reports = no funding) if you don’t turn up to medical appointments… (Me: You can’t seriously!… shhh *silences self*)

That’s not my job.
You love filling out forms!
Never fill out her forms.
None of us want to waste your CoS funding.
Just do it!

Reasons why I’ve been difficult to work with include:
Ranting when told something I don’t want to hear. Like the NDIS doesn’t accept Clinical Psychologists (3 now) diagnosis’s and a multi-disciplinary report stating my needs.

Anger because I don’t want (multiple) random strangers turning up at my door at random times because regular shifts with max 3 workers isn’t how the company works. Sets me back emotionally, puts instability into my life and perceptions.

When I get flustered and stutter, to ‘help me’ am told to stop and we’ll do something else.

Support workers not liking and untrained for supporting me while I verbalise frustration searching for documents on my computer, phone, email addresses and four cloud storage accounts.

Just crying half the shift. Barely talking.

My Support Worker Binder being too big and overwhelming (info/ road map to being my support worker/ NDIS stuff and medical things I need to do)

“overwhelming” people with documents/ paperwork/ writing/ templates

Basically, “waste time” (I can see that) with descents into disbelief/ frustration/ ranting.
eg: Support worker business models when unsuitable supports turn up.
eg: I have given heaps of info that is mangled/ simplified because of lack of staff eg: Agoraphobia into Anxiety

Ignoring emails because I get what feels like 20 a day.

Forgetting what I’m supposed to do a few seconds in.

Forgetting what I’m supposed to do.

Having pages of notes in many books and index/ talk cards.

Going to my notes because I can’t remember my needs.

#DisabilityTwitter
Also difficult to work with because:
I am not ready to leave the house when support arrives. It is expected that I get in the car when it pulls up.

Got my support worker binder and task lists (daily, leaving house, coming home, bed time, day before outing).

Can’t repeat verbally and too ashamed to write and refusing to beg – again on separate shift with same worker – This is my support worker binder. It has my daily task lists. Morning routine. Leaving the house. Coming home.
This is what we need to do.

They don’t know what to do.
Me: There are heaps of things we can do, but how to decide which one right now?
Just write a list.
Me: stares blankly

Working within ‘the system’:
It’s YOUR job to train these people.
Just book in any psychiatrist. See a few if you need to.
What supports do you need? I thought I emailed them to you last month? Oh sorry, it must have got lost. How about you tell me now.
What is a hand-over?

Q: What are your qualifications? A: I’m suitably qualified. Q: In what? How long have you worked in the disability sector? A: I have the qualifications I need.

I need someone who’s experienced/ worked w homeless people, people in crisis, front line workers.
You don’t need that.

@threadreaderapp unroll please

Originally tweeted by Karletta Abianac ✏📖 (@KarlettaA) on April 21, 2022.