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Petition to help Australians with ME/CFS to access disability services

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Location
Melbourne, Australia
The National Disability Insurance Scheme (NDIS) was established in Australia a couple of years ago to improve the access and quality of lives of Australians with disabilities. Unsurprisingly, Aussies with ME/CFS are routinely being denied access to the NDIS. Emerge Australia has launched a new petition asking the Australian Minister for Families and Social Services, and the National Disability Insurance Agency, to:

1. Partner with the ME/CFS community to develop appropriate guidelines for NDIS assessors.

2. Add ME/CFS to List B of permanent conditions where further assessment is required.

3. Recognise that people with ME/CFS should not be required to have undergone Graded Exercise Therapy or Cognitive Behavioural Therapy in order to access the NDIS as these treatments are no longer recommended and may cause harm.

Please sign the petition and share widely!

Edit to add: This petition is also open to non-Australians! Please sign! :)

https://www.change.org/p/the-minist...ronic-fatigue-syndrome-to-list-b-of-the-ndis?
 
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taniaaust1

Senior Member
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Sth Australia
hi, I got approved for the NDIS as I got a great assessor (and also had a court ordered document supporting my medical status which recommended that I needed full time care) but have found that my case managers "seem" to be discriminating against me and the ME as far as getting my approved support services in place, they do not even return my phone calls, I was ringing week after week after week with them not calling back. (I was put with a "special unit" who I was told was going to sort things out but which does nothing).

So I complained to one of my local MP who ended up telling to take it to one of the federal MPs which I did.. the health minister's response back to the federal MP was I need to contact my case manager.. sighs.. the same ones who will not phone me back and still have not with multiple phone calls and even getting after getting phone calls from my friend and sister (after I'd been phoning for a month trying to get my case manager, my friend managed to get hold of her only to have her make up the excuse that she's been too busy to phone me back.

My latest one since Ive had since xmas has not even phoned me back EVEN ONCE. I got to speak to her only the one time, that was when I agreed to change over to her from another in her dept after I'd put in complaints due to them not having put my supports in place like they were supposed to do. She convinced me to stay with that dept to manage my support, promising me she'd be easy to contact and then has done this to me. (I feel like this dept is purposely keeping me hostage to prevent getting my supports into place).

My support was approved back in Oct? 1st last year (it may of been earlier) and I've been fighting all this time to get the approved support.

In the mean time my house was offically declared a squalor as it got so bad I could not use the shower or toilet.. was left not being able to properly wash for months and going outside to the toilet.

People think the UK patients have had it bad but here in Australia we are just getting totally ignored no matter how severe, they wont even give the mental health services to us (I could not get even get counselling at one point due to "your situation is situational" in regards to all the issues I get with the ME, even though I was feeling suicidal and tried to suicide), they throw us out of hospitals when we cant walk etc (I've been put into a taxi from hospital, kicked out and sent home and left to CRAWL up my driveway).

I even was assaulted one time when I collapsed and could not get up by a professional while under their care trying to force me to stand after I collapsed due to disbelief in this illness. He put his boot on my head and pushed hard, hurting me trying to force me to upright myself (i felt like he was going to crush my head).... I had a mental health breakdown after that event which sent me to hospital where I was just kicked out again with everything going on ignored.

Things re this petition need to go way further or people will end up like me.. granted the NDIS (Im a very rare case with that) but then find they end up not being able to access the services even when its granted due to ME/CFS discrimination and people refusing to do their jobs due to their disbelief in ME/CFS. And its no good then complaining to the health minister as they will only get the same response as he's given me.

(I'll see if i can find his letter to post it here)

............

NDIS handwritten letter.jpg
 
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taniaaust1

Senior Member
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correction to my other post, it was the Minister of Human Services who responded in regards to my case workers not putting my services in place after they were approved and not the Health minister. (I was put on a managed plan for this so not allowed to try to organised them myself and had to go through them).


Letter from MP  response from Minister  in regards to my complaint 1 feb 2019 page 2 .jpg
 

taniaaust1

Senior Member
Messages
13,047
Likes
15,523
Location
Sth Australia
Letter from MP  response from Minister  in regards to my complaint 1 feb 2019.jpg Letter from MP  response from Minister  in regards to my complaint 1 feb 2019.jpg

Anyway, I was supposed to be approved for sufficient support for house cleaning, gardening, my shopping, drs appointments and getting out other places and for some social events.

All that happened with the NDIS is my previous DisabilitySA support was carried over to the NDIS system which was for ASPERGERS (on the DisabilitySA system ME/CFS was a condition they did not cover) and all the extra I got granted by getting a great NDIS assessor which was supposed to help get me out of a situation of living in squallor and who did consider my ME/CFS was not put into place at all. To this day I still are not getting what I was told I would get and was approved to get.

and my complaint of them refusing to return my calls was ignored by the Minister for Human Services who just says at end of the letter "encourge Mrs Selth to contact her re her concerns". How in the heck are I meant to discuss anything with them when they will not talk to me.......

Ive got a new case worker given me in that same special "in-kind services unit", well told I was given a new one after I tried working for the other for months with her not putting my supports into place ... but she even told my friend when he managed to get hold of her (after I tried for weeks) that she was too busy to phone me back (and this is someone who got me to stay with them to manage things as she promised I would be able to contact her easily after I had trouble with the other there).. this is after me phoning there for weeks and she still has not. I think they are doing ON PURPOSE.

I'm now trying to change to another place to manage my support but this other one is like it is purposely keeping me hostage and I can't be just changed. I've made phone calls now 3-4 weeks straight trying to change due to that one who has not ONCE phoned me back.
..........................


I hope the ones who are doing that petition sees this and realises from what has happened to me AFTER NDIS approval that there are still severe issues in getting support with them even after that. It's so disheartening. The discrimination right through the government depts is just too bad and they need to take that petition further beyond the step of just the NDIS approval to make sure we get the support.
 
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I am so sorry to hear this :(
This is injustice, unethical,not kind,or humane at all
NDIS is something I have to reapply for as didn't get worded properly by those who submitted it...so it's something on the waitlist again for help getting application done
My CFS is very mild compared to alot here.... I go through times of almost normal appearance of a life to unknown outsiders... and then I still have the temperature regulation issues ongoing though,and pem to factor in,and aches pains in general
I have multiple co existing diagnoses juggling too and alot of trauma and abuse processing and trying to heal and keep safe still too
I have been able to find out some things too what's out there to help and what's just really labels but not substantial living up to its name to help/access such
Very frustrating and overwhelming not being understood and given support to heal/manage issues with more relief

I get very isolated as can not go out that much for groups etc(exertion have to balance effects later with other demands on me)
Are your family friends far away too?
It makes it tough :(

I have Asperger's, PTSD, IBS, depression and anxiety struggle with esp anxiety sensory processing issues with CFS also and a few other conditions to sprinkle on the list
Sometimes I feel discarded and so different unwanted but anything but negatives by ppl or feel sorry.. I just seek peace, fairness, connection. :)

I have found the free crisis counseling phone and chat services like lifeline(overwhelmed), beyond blue(depression, anxiety), 1800respect (sexual assaults/family violence counseling help) to be good

Can you get mental health care plan for counseling that you seek? Also places like the salvos and st Vincent dear Paul can assist with social support and counseling help too. St Vinnie can do home visits for the lonely,ill, isolated people... I actually was calling them today but phone was busy...will try another time perhaps.
I really hope that you are able to get support asap.
What state you live in? I am in Geelong area now in Vic.
Re any violence or abuse done to you please report it to police is best policy I think as it's more able to get justice and you safer.
Also then you get more access to healing helpful places like victims of crime to get additional counseling and other things to help with healing.

Best wishes.
From Tabitha