Australia - need URGENT help to reapply for disability!

[RustyJ]

I was assessed favourably by an Occupational Physician for a non Centrelink invalidity pension. Found me to be totally and permanently disabled due to ME/CFS. You might want to try and find one of these in the Brisbane area.

Best wishes.

Hi AndyPandy. What is a non Centrelink invalidity pension?

 

[alex3619]

Anticipating issues, at my appointment with my ME doc a few hours ago (most of you know who he is, PM me if you want more info) I am going for a qEEG. There is a form you have to fill in and score points on to get it subsidized - I scored basically zero for most of it, but two of them I strongly endorsed which got me over the line. I do not have depression, and I am not anxious, but although fatigue is not what I have an issue with its close enough for a simple questionairre. I think any doc can refer you for a qEEG, or quantitative EEG, but there is a process to follow if you want any rebate.

 

[alex3619]

Since joining this forum i have found out about the CFS clinic at Griffith which sounds really promising for me, i will be making an appointment and getting a referral ASAP.

Don't rely on this for an immediate help. There is a long waiting list so far as I am aware. Keep watching this thread though, as more options might pop up.

 

[alex3619]

Thank you so much for all of the responses, ive already learnt so much and this is only my second day on here!

I hope you find all the answers you seek.

Living with ME or CFS or SEID or etc. is really a journey though. We are all looking for it to end, but for now the journey is where its at.

I keep wanting to ask "Are we there yet?"

 

[AndyPandy]

Hi AndyPandy. What is a non Centrelink invalidity pension?

My pension comes from death and disability cover under my superannuation scheme.

 

[postit_note]

Don't rely on this for an immediate help. There is a long waiting list so far as I am aware. Keep watching this thread though, as more options might pop up.

Hi Alex, yes im assuming it will be a very long wait so no good for anything immediate, but from what i have read it sounds very impressive and promising for the future. There are two main doctors in Brisbane i have seen people discuss, with mixed reviews. Deed seems to be the most recommended and i see he is your dr. Do you know what the wait to get in to see him would be like and what the consult fees are?
Transport and cost is an issue for me but if it is reasonable i should be able to work out something.
I also am worried about going to all the effort and expense to not get much out of it, as it has happened to me before.

I really dont expect to recover, but at this stage i just really want more confirmation with whats wrong with me (perhaps tests my current GP hasnt done or doesnt even know about) , some understanding, acknowledgement and more insight.

I hope you find all the answers you seek.

"

 

[Sea]

I would refer the person to a specialized clinic such as Dr Marshall-Gradisnik center at Griffith University.

Since joining this forum i have found out about the CFS clinic at Griffith which sounds really promising for me, i will be making an appointment and getting a referral ASAP. I couldnt find any information about weather they charge or not, the phone lines are only open Thurs and Fri so i will be calling first thing Thurs.

Sadly, I wouldn't recommend this at all. Dr Marshall-Gradisnik is a researcher not a clinician. I have been a volunteer in their ME/CFS research for a few years now and I am hopeful that they will find helpful immune function tests.

Their clinic however was a huge disappointment. There is no communication between the research and the clinic. The research is funded by grant money and the patient visits to the clinic are funded by Medicare + patient contribution. They are not allowed to share data with each other at all. The doctor at the clinic had nothing to offer me, no further testing or referrals.

Hi everyone, My name is Jamie (F) and i am 26 years of age
This post was made on behalf of me (thank you rusty j)
Ill explain my situation
Ive had CFS since the age of 17 in 2006 after having a severe case of glandular fever which took me over 6 months to recover from, however the fatigue never went away. I was brushed off for years by doctors telling me its normal or that is was because of depression. I didnt even know what CFS was untill about 2012 when my tafe teacher told me he thought i had it because he also coincidentally was my teacher when i had glandular fever (but i had to quit as a i was so sick)
I finally found a doctor about two years ago who diagnosed me with CFS, after running all the basic tests and assessing my symptoms, how ever she is just a GP, not a specialist.
My level of fatigue impacts all areas of my life, some days i cant leave the house and can only get out of bed briefly. Some days i can go for for a couple of hours then just crash once i get home. My concentration, memory and mood is greatly affected. I also get extremely dizzy whenever i stand or bend over, i lose my vision, sweat, feel nauseous, weak, shaky and have to hold on to something till it passes. This happens most days.
I get hart palpitations occasionally from bending over which causes me to faint if i dont stop what ever im doing and sit it out.
I also have IBS and some bladder issues. I have moderate to severe muscle, joint and nerve pain partially due to a leg discrepancy caused by a rotated hip, however that doesnt explain my finger and elbow pain. Headaces most days.
I also have mental health problems which are currently managed. However at the news of my application being unsuccessful i had a total break down for a couple of days untill i came across this forum and started to have hope again.
I was relying on the extra pension money so i can move out of my parents house (ive been rejected from every rental i have applied for because my income is too low, even though i have an excellent rental history) and have some independence, also so i could finally afford to see specialists.

Okay so about my pension application. I had my GP fill out the report, she stated that i have CFS and that i am unable to work at all. She listed some symptoms but i know it wasnt in depth enough. She also put down depression/ anxiety due to my poor health and recommenced that i get my Psychologist to write a report taking about how my condition affected my mental health. I asked my psyc to do this and she repeated that "i acknowledge that physical and mental conditions over lap how ever i keep to two separate". She did write a very short two paragraph report stating that i suffer from an anxiety disorder and she defined the disorder.
With my claim i also attached the report from when I originally had Glandular fever, and two physio reports.

At the job capacity interview with an Occupation Therapist at centrelink i further discussed my symptoms but i felt very dismissed by the interviewer who really seemed like she was completely skeptical of me and almost manipulative. She also asked if i had seen any specialist about CFS and i told her the only ones i knew of (at the time) were far too expensive for me to afford on my current payment of $250 pw. She also asked if i was on any treatment for it and i said i didnt know of any apart from all of the supplements, painkillers and physiotherapy i was already doing.

I am waiting for a letter to come in the mail explaining why my claim was not approved, i hope this gives me enough information so that i can appeal.

Since joining this forum i have found out about the CFS clinic at Griffith which sounds really promising for me, i will be making an appointment and getting a referral ASAP. I couldnt find any information about weather they charge or not, the phone lines are only open Thurs and Fri so i will be calling first thing Thurs. I also did a google search about psychologist who specialise in CFS and i found one on the sunshine coast by the name of Sam Clarke

http://www.scclinpsych.com.au/about-our-psychologists/sam-clarke/

Thank you so much for all of the responses, ive already learnt so much and this is only my second day on here!

Jamie welcome to the forum and I am sorry that you are in this difficult position. I am not sure that Centrelink will give you an explanation, at least not a detailed one. I can think of several reasons from what you've written that may have contributed to the denial though. Being denied is often not about whether you are sick enough but about whether the information you have provided fits their criteria.

1. The doctor's report. Most doctors are not familiar enough with the detail that Centrelink requires. Centrelink is not really interested in symptoms, they want to know how you are affected so that they can work out what you can and cannot do. For a medical certificate it may be adequate for a doctor to state you cannot work, but for the disability application they need to state exactly how and why you are limited. Many doctors will only put in the time and effort required if you book and pay for a long appointment.

The following link takes you to some information that may be helpful even though a few rules have changed since this was written.
http://www.legalaid.nsw.gov.au/publ...resources/disability-support-pension-pamphlet

2. A condition must be considered permanent. By centrelink criteria that means fully diagnosed, all treatment options fully considered and your doctor's opinion that your condition will not improve in the next 2 years. Many doctors don't like to say you won't improve, but this is one time you need them to be realistic rather than optomistic. It is not a centrelink requirement that you see a specialist, but still they do expect to see a specialists report and I think it would carry more weight than a gp report.

It is difficult with our condition where so many of the ordinary test results are normal, yet Centrelink will not accept self reported symptoms. A job capacity assessment is to evaluate what you can and cannot do and they must take into account whether you can do something reliably and repeatedly and whether doing something will worsen your condition. A 2 day CPET gives a good objective assessment of disability, but it's not so easy to find in Australia and can provoke a relapse. It is sad when we feel like we need to do something which could worsen our health in order to prove our limitations. You are allowed to take information on your condition and it would be helpful to gather some of the documentation that lists not just symptoms but gives a good explanation of how we are affected by pushing ourselves.

If your doctor doesn't think you need to be referred to a specialist then their report needs to reflect that you are fully treated by them. Given that our illness doesn't have a specified treatment plan centrelink staff often don't quite know what to do with this requirement and it needs to be clear that everything reasonable has been tried.

3. With the new rules from Jan 2015, unless a condition is terminal, Centrelink expects you to have undergone a programme of support, they don't really consider you for dsp until you've been on Newstart and shown that you're unable to work. (I think for a year or so?)

Apart from the dsp, some of your symptoms fit into the category of autonomic dysregulation (dizziness, fainting, nausea, palpitations, bladder issues) It is very common for people with ME/CFS to have autonomic problems but there are some treatments available which can offer some help to some people. It would be worth getting a referral to someone who can test and treat you for this.

 

[alex3619]

Do you know what the wait to get in to see him would be like and what the consult fees are?

He does charge more than the standard fee, and if he still does it the first appt. is a long one as he wants a medical history. However there are also issues about treatment. He is limited in what he is allowed to do, but you can discuss options with him.

Griffith does not offer cutting edge treatments. What they perhaps have is cutting edge testing. That might be very useful if worried about pension claims.

 

[alex3619]

The doctor at the clinic had nothing to offer me, no further testing or referrals.

Darn. That is indeed disappointing.

 

[AndyPandy]

Is there a QLD ME/CFS Society? If so, they might have a list of doctors who may be able to assist with Centrelink paperwork. You might have to join first to access this info.

 

[alex3619]

they don't really consider you for dsp until you've been on Newstart and shown that you're unable to work. (I think for a year or so?)

I was on sickness benefit for several years before I applied for a pension.

 

[alex3619]

Is there a QLD ME/CFS Society? If so, they might have a list of doctors who may be able to assist with Centrelink paperwork. You might have to join first to access this info.

I am not sure what is what with the current society. I was there when the old one collapsed, and the main society became Toowoomba. We had 800+ members but there was a time when everyone was too sick to keep the society running.

 

[Sea]

Griffith does not offer cutting edge treatments. What they perhaps have is cutting edge testing. That might be very useful if worried about pension claims.

They might have cutting edge testing available for research use but it's not there yet for clinical use. As a volunteer I don't get any benefit from the testing that they're doing......yet....but I hope it will make a difference for us all in the future.

 

[heapsreal]

My pension comes from death and disability cover under my superannuation scheme.

In your experience and understanding of hearing about others, was it just has hard and as many hurdles claiming disability through your superannuation as one through government disability pension?

Many now only cover people for 2 years only?

 

[AndyPandy]

@heapsreal and @postit_note There were hurdles and it was exhausting and stressful. I had to get it past my employer first and then past the superannuation organisation. All this while deeply ill.

I had to get reports from doctors I had seen to get over the first hurdle and then I was examined by an Occupational Physician and a Psychiatrist who worked for the superannuation organisation. This took many months.

Fortunately the Occupational Physician understood ME/CFS. The Psychiatrist found no psych issues. I had an excellent work history before becoming ill.

They also relied on a written submission I made. I put a lot of effort into this. They told me I had written their report for them. This is a good situation to be in.

I think that one of the measures which can help in these situations is to research what makes a claim successful. What does the assessor need to know to approve your claim? Give them what they want and make it easier for them (and yourself).

In my case I researched online to find out what others had done and drafted my submission accordingly. I found nothing exactly on point, but some information from the U.S. about what to include in disability claims gave me enough clues to work it out.

It looks like the Centrelink capacity assessment documents attached by @Sea in this thread are part of the answer. Just make sure that anything you are looking at is current.

Generally, with these pension claims it isn't enough to simply say that you are disabled by ME/CFS and have a doctors report that simply says you have ME/CFS. You have to show how the symptoms of ME/CFS affect your capacity to work eg make it difficult/impossible for you to walk 50 metres, comprehend complex documents, raise your arms over your head to stack shelves etc. etc. You need a doctor to support your claims.

If it were me, I would start looking through the Centrelink capacity assessment documents and systematically work out how I fit into that scale. Armed with this I would then book a long appointment with a sympathetic doctor and go through it with them.

Is there a social welfare organisation in Qld which supports people in their struggles with Centrelink? They might be a good source of information on how to tackle this.

It is hard to say which process is more difficult - Centrelink or superannuation. Neither are falling over themselves to give you a pension. However, based on my experiences years ago, I would say that Centrelink would be harder to navigate.

Regarding the 2 year rule, the superannuation scheme that I was in didn't have this. It was an old scheme. I understand that newer schemes have the 2 year limitation on benefits. It's all about limiting their exposure.

Best wishes

 

[Sea]

They also relied on a written submission I made. I put a lot of effort into this. They told me I had written their report for them. This is a good situation to be in.

I think that one of the measures which can help in these situations is to research what makes a claim successful. What does the assessor need to know to approve your claim? Give them what they want and make it easier for them (and yourself).

It looks like the Centrelink capacity assessment documents attached by @Sea in this thread are part of the answer. Just make sure that anything you are looking at is current.

Generally, with these pension claims it isn't enough to simply say that you are disabled by ME/CFS and have a doctors report that simply says you have ME/CFS. You have to show how the symptoms of ME/CFS affect your capacity to work eg make it difficult/impossible for you to walk 50 metres, comprehend complex documents, raise your arms over your head to stack shelves etc. etc. You need a doctor to support your claims.

If it were me, I would start looking through the Centrelink capacity assessment documents and systematically work out how I fit into that scale. Armed with this I would then book a long appointment with a sympathetic doctor and go through it with them.

Yes @AndyPandy I completely agree that we need to do the information gathering and present it in a usable form for all concerned with our case. That is also what I did for my doctor. I went through the centrelink assessment tables and linked them with my symptoms and wrote examples of how I was affected (eg seeing a red traffic light, recognising it as red, but registering no comprehension of what I should do in response to it - that pretty much eliminates any work driving or operating machinery). My doctor also commented how much easier I had made it for her to write my report.

It's a fine line where we are easily accused of flouting the system, when in fact all we are trying to do is follow their rules and criteria which they don't make obvious at all.

Regarding the links I gave, the Centrelink tables (2011) are the current ones they use but the guide and the advice from legal aid although useful is not the most current. It will take a bit of digging around to find the latest, if indeed it exists yet. The rules have only changed from Jan 2015.

One of the biggest changes in the job capacity assessment is that they say they want to focus on what you can do and what barriers there are to working that they can help to remove (eg by re-training for a less demanding role, or disability accommodations like sitting for a job that would usually involve standing etc). Many people with significant disability can work given the relevant accommodations. It is up to us, if our health is such that we cannot work even with accommodations, to show how and why their approach will not work for us. Our barriers cannot be overcome.

 

[alex3619]

Please read my PPS at the end.

I do not recommend Bill Wilkie, doh. He endorses PACE! according to a recent post.

"The name change was at least partially due to negative CFS/ME-advocate responses to the findings of the PACE study… The new name appears to be a political maneuver to satisfy patient advocacy groups. It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy."

PEM is objectively determinable. Improvement from CBT/GET has failed every objective test.

PS This presumes that WIlliam Wilkie who wrote this is the same as the doctor I saw in 1989. You cannot always be sure.

PPS Double Doh! It turns out this was from different Dr Wilkie!

 

[taniaaust1]

. I also get extremely dizzy whenever i stand or bend over, i lose my vision, sweat, feel nauseous, weak, shaky and have to hold on to something till it passes. This happens most days.
I get heart palpitations occasionally from bending over which causes me to faint if i dont stop what ever im doing and sit it out.
I also have IBS and some bladder issues.

All that is related to autonomic dysfunction issues. You have coexisting dysautonomia with your ME/CFS (commonly viral infections eg glandular fever can leave people with this), sounds like its postural orthostatic tachycardia syndrome (POTS) seeing you are getting the heart palpitations you notice on bending.. you probably are getting these when you stand up too but may not have noticed.

You need to get a tilt table test done.. I think result eg POTS and maybe other dysautonomias too, will support your disability pension claim. Vision loss or sudden blindness is fairly common with POTS, caused through lack of blood going to your brain when you stand up.

Okay so about my pension application. I had my GP fill out the report, she stated that i have CFS and that i am unable to work at all. She listed some symptoms but i know it wasnt in depth enough. She also put down depression/ anxiety due to my poor health and recommenced that i get my Psychologist to write a report taking about how my condition affected my mental health. I asked my psyc to do this and she repeated that "i acknowledge that physical and mental conditions over lap how ever i keep to two separate".

I suggest to phone your GP and tell her the psychologist said they are separate disorders so wouldn't include the ME/CFS in her report and ask your GP again if she'll do a report on it, tell her you need it.

At the job capacity interview with an Occupation Therapist at centrelink i further discussed my symptoms but i felt very dismissed by the interviewer who really seemed like she was completely skeptical of me and almost manipulative.

I sympathise, I had a nightmare time in the past with centreline job capacity interviewers who thought ME/CFS wasnt a real illness and treated me like I was manipulative. I couldnt even stay seated for my appointment as I was going to faint and ended up laying on floor to not faint but they still kept saying I was fit to work. If you get one like this, it doesn't matter what you say or how sick you are, they wouldnt believe you. You could pass out in front of them and they'd think you faked it.

Hence I very strongly recommend you go and get a tilt table test done!

She also asked if i had seen any specialist about CFS and i told her the only ones i knew of (at the time) were far too expensive for me to afford on my current payment of $250 pw. She also asked if i was on any treatment for it and i said i didnt know of any apart from all of the supplements, painkillers and physiotherapy i was already doing.

I am waiting for a letter to come in the mail explaining why my claim was not approved, i hope this gives me enough information so that i can appeal.

You may be in for a surprise, the knockbacks I got were on ridiculous grounds and you could possibly find the same ones on your report.

1/ I was knocked back for not seeking correct ME/CFS treatment (I think the assessor thought we all should be CBT and GET. The fact you are not seeing a specialist may well have them report that you aren't properly seeking treatment and you could find yourself knocked back on same grounds as I was in past (thou I was see a CFS specialist, I was just not doing the treatments centrelink assessor expected).

2/ Cause of number 1. I was knocked back on the grounds that I had a possible treatable illness. (ridiculous).

Do whatever you have to do to get through hurdles if you get unfortunate and it reaches top appeal level and goes then interstate to be assessed in to Canberra (this is what happened to me in the past), there was a very good assessor who is very ME/CFS aware (hopefuly he's still there for anyone who runs into issues with the new rules. Don't give up. Im sure you can get it, you just need to keep pushing and working on doing what is needed to get it.

Since joining this forum i have found out about the CFS clinic at Griffith which sounds really promising for me, i will be making an appointment and getting a referral ASAP. I couldnt find any information about weather they charge or not, the phone lines are only open Thurs and Fri so i will be calling first thing Thurs.

That's a good move but be warned, they may have quite a waiting list. Also even if you have to pay or even borrow some money from parents to go and see a MECFS specialist, it will be well worth it if it helps you get onto the disability pension.

 

[taniaaust1]

To prove mental capacity, for ME, one need to get a neuro-psych assessment, which looks at capacity to concentrate, capacity of memory, just to name a few. It is well known that in the case of ME/CFS/SEID there are many defficiencies in that regard. Unfortunately these exams are not cheap, need to be performed by experts in their field and need to know the features of the illness.

I would refer the person to a specialized clinic such as Dr Marshall-Gradisnik center at Griffith University.

I agree with Kati as I found with certain neuro-psych testing I did amazingly well.. I got 20/20 correct for something on 1st day on a 2 day neuro psych testing thing. Day 2 he did different kinds of tests and my result was horrific, it was so terrible it shocked me.

It showed I was completely incapable of learning new things and the more I went over what I was trying to absorb, instead of the repeating which would help a normal person.. the more I did something the the worst my result got. (I could only remember 4 out of 50 out 50 cards shown to me over and over. I started off with 8-9 first attempt. No wonder I had to give up on collage when I got this illness, I couldnt learn at all for my exams.

So a neuro psych test could really backfire depending on what exactly what psych tests are being done. Its risky if the neuro psych doesn't know what things to look for in ME/CFS

(there will be a good research study published including neuropsych testing coming from the Adelaide ME/CFS researchers team lead by Dr Richard Kwitek (I think got his last name wrong?) sometime in the future.. the one I was in. They were very though.

 

[taniaaust1]

http://www.comlaw.gov.au/Details/F2011L02716/a7e39665-7fed-4b28-bf1e-82aa303a65de

http://www.comlaw.gov.au/Details/F2011L02716/778db56e-ac73-4c49-8d54-55bb8d3b6bbb

Thanks.. I guess this is where telling them all your symptoms comes into things. Its very interesting reading.

(4) For the purposes of paragraph 6(3)(a) a condition is permanent
if:
(a) the condition has been fully diagnosed by an
appropriately qualified medical practitioner; and
(b) the condition has been fully treated; and
Note: For fully diagnosed and fully treated see subsection 6(5).
(c) the condition has been fully stabilised; and

Social Security (Tables for the Assessment of Work-related Impairment for
Disability Support Pension) Determination 2011 page 6. "the condition has been fully treated" ..

that's the one I got one of disability pension claims knocked back on which I was talking about before. If the assessor believes in GET and CBT for ME/CFS and a person hasn't had it, you can actually get knocked back on this ground and end up having to appeal. (hence why you may need to good ME/CFS specialist to do a letter explaining why you aren't doing that if you get knocked back on the ground of it not being fully treated.
................

Some important points I just picked out of that

Information that must not be taken into account in applying the
Tables
(1) Symptoms reported by a person in relation to their condition can
only be taken into account where there is corroborating
evidence.

I think that is an important point to remember and make sure you have if applying for disability. You'll need good letters from doctors supporting what you cant do (things on the rating tables).

Descriptors involving performing activities
(3) When determining whether a descriptor applies that involves a
person performing an activity, the descriptor applies if that
person can do the activity normally and on a repetitive or
habitual basis and not only once or rarely.

Very good to see that there! That got ignored during my assessments.

c) if an impairment is considered as falling between 2
impairment ratings, the lower of the 2 ratings is to be
assigned and the higher rating must not be assigned
unless all the descriptors for that level of impairment are
satisfied;

quote from page 10

Where a single condition causes multiple impairments, each
impairment should be assessed under the relevant Table.
Example: A stroke may affect different functions, thus resulting in multiple
impairments which could be assessed under a number of different Tables
including: upper and lower limb function (Tables 2 and 3); brain function
(Table 7); communication function (Table 8); and visual function (Table 12).

page 10