Ken, onya! Perhaps the underlying resistance really is due to the 'bad back? CFS? oh yeah" - they don't believe it. I don't believe it myself sometimes. Prior to 1993, I was one of those who might see a TV item about CFS and ridicule the subject. Now I have it as part of fibromyalgia and feel like I am in a nightmare.
and KalWeb - SO MANY nurses have work related pain - I was shocked that your superiors said 'Let him fall' - don't Nurses have to promise to CARE about patients?

I am grateful to be receiving my DSP payment, but what reallys irks me is that employed people think a pension covers a lifestyle. It does not. After rent, basic food and utilities come out of the DSP, there is scant left for maintaining a vehicle and petrol. Renting a video or seeing a movie is out of the question. A pet is a luxury and vet fees are a hurdle. Repair of worn out appliances is not possible. The penury on top of the pain is so (not) good for the depression.

Hi Ken
What an eloquent and articulate letter, and as another respondent notes - the people who should be taking notice of it are not the people who are. Having worked for years for the CES, then Centrelink (briefly, it was all I could stand!), I would agree with your estimates of 5% of people really not wanting to work. And let's face it - there are not enough jobs for the people who want them, so beating people with sticks (i.e. humiliating them as much as possible) is fundamentally counter-productive. People with severe disabilities often DO work - but all they can get is voluntary work. That satisfies the voracious Centrelink to an extent, but further damages already damaged self-esteem. John - certainly walk in the shoes of a person with disability,and try to get a grip on reality. Given the choice, an employer will go for an "able-bodied" person every time.

My Aunt is quite severely disabled, enough to qualify to live in supported accomodation since she was sixteen (she is now fifty). Despite her obvious difficulties in life, and the fact that she has constantly been assessed as needing assistance, every two years (and occasionally more often), she is re-assessed, causing difficulty and stress to her carers, her doctors, and her elderly mother. I just do not understand the logic of the DSP, which seems to think that a person, particularly someone who is ageing (she seems older than her chronological age, due to the stresses on her body of her disabilities), would for some reason 'improve'. Surely one of the ways to streamline the centrelink process, and reduce administrative costs, is to stop the regular inquisitions into her health! It should be obvious that after so many reviews, by so many different bodies, that improvement is not going to happen.

It just seems that so much of the DSP system is aimed at harrassment of people, causing stress and suffering for those close to people who really need help.

The assessment for the DSP is strenuous, and surely shouldn't be made ever more difficult for people who should be rightly considered 'vulnerable'.

Hi Ken

Well done , you are a tireless worker Ken. The CFS world is all the richer having you as a member. It is unfortunate that you have suffered from the disease for 12 years. On the positive side of things, you certainly are in a strong position coming from experience to be able to argue the case on behalf of CFS sufferers.

Congratulations on a well written letter to the Prime Minister.

Regards

John Stephenson
President
Wollongong CFS/FM Support Group

Hi Ken,

I loved your letter. I receive a disability pension due to chronic asthma and allergies and depression. I have had serious asthma since i was a baby, yet every 2 years without fail, my review letter comes. The cause of this?? 8 years ago, i was feeling a little more well than usual, and thought i would try part time work. The job was two six hour days each week, and i felt perhaps i could handle that. The first week, i required training, which meant i had to do 30 hours that week. I managed quite well, with the help of cortizone drugs, and a lot of pain and anxiety, but i felt i was doing the right thing for my future. With that, i earned over $250 in one fortnight, and this, triggers a review by computer. For trying to do the right thing, (and failing due to ill health, airconditioning, and being a little too slow due to medical problems), I now expect that letter every 2 years. I dutifully follow all instructions, await to see the commonwealth doctor who will basically tell me i look fine to him, and await the reply. Twice i have been told i am better. Twice i fought it, as did my indignant GP. Both times i won. But the point is, i could really do without this stress. I am not a bludger. I do voluntary work with the mentally disabled, whenever I can. I contribute to society the only way i can, by doing volunteer work. YOu see, with volunteer work, if you get sick, you can ring and say im sorry, but i cannot attend today. Nobody tut tuts, they just say okay hope you feel better soon. Also, if i am not well but attend anyway, i can be slow. I can take my time. I can stop for 15 minutes to use my nebuliser. Mr howard, can you please find me a job, where that will be ok? because i would dearly love to feel 'valued' and not just a burden on society.

Lee.

Excellent article and some thoughtful suggestions.

The option of being a 'low income earner' where you can work P/T and still retain a health care card and some New Start payment becomes untenable after a time period and you are forced to choose between going on to Disability Pension or CRS or being bullied by unqualified, unskilled, lazy and incompetent JSP's.

I have fibromyalgia and hypermobility syndrome [ie I am 'double-jointed' leading to stress fractures doing everyday things]. I do not know how much I can work as that depends on activity level involved, type of work, travelling times etc.

Another issue is that input from medical practitioners is excluded from a Work Assessment. Psychologists are not medical practitioners and from my experience don't even know basic physiology, and are still being trained to view this illness as psychosomatic in spite of medical and scientific studies dating from the 1980's that find this view untenable.

Unreasonable workplace and New Start conditions are ironically forcing a lot of people on to the Disability Support Pension.

Centrelink's outstanding incompetence is highlighted in a report done by IT analysts and discussed on www.zdnet.com. In my case it was considered much better to have me spend money I do not have, trying to get medical GP's and specialists to verify what I already have been dealing with for 30 years now, all the while aggravating my pain and fatigue because they have lost all my medical reports and file [in spite of having six years to find it].

My solution is to try to get Peter Beattie's assistance with a job coop and I am happy if they gain some political mileage out of it.

Please send your letter to the Ombudsman as well. I sincerely believe that I have only been treated with some consideration by Centrelink in the last few months because the psychologist discovered my sister was a lawyer. No, I am not being cynical.