I'm writing from the United States where I'm woefully ignorant about John Howard and DSP.

What I do know about is chronic fatigue, the desire to work, the effort to work, self-employment, and worry about family relationships.

This letter describes them all better than I have heretofore seen them described. Every point about disability is well taken.

Thank you, Ken Davis!

Reading Ken Davis"article registers alarm. What is happening in our disability services area? Who is John Howard listening to? Surely if he listened to more people like Ken Davis there would be a little more compassion and common sense brought to bear. Of course most people want to work - we all need to feel a necessary part of the community - to feel our abilities are appreciated - to our disabilities exposed. Listen to this man John for goodness sake.

Grannyrobin - thank you for your post - always good to hear from people from overseas - especially USA.

Culture vulture - based on performance, what makes you think Howard will suddenly start listening now?

I have had the misfortune to be reliant on Sickness Benefits for periods of time and I know how the system can suck the life out of you. I am back at work now and feel so much better that the past feels as surreal as a nightmare. It is one thing to encourage people back into the workforce but without positive supports such as incentives for employers it will not work. Not only is the divide between rich and poor increasing but the Howard administration is creating a new sub-class of people.

Ken Davis a beautifully articulated article. Unfortunately the only people who will listen are the ones listening now.

Maybe we could try another OLO poll? Graham are you listening?

Thank you Ken. Gutsy.

Like yourself, I am a health professional. I'd had 33 years of nursing experience when I had a nursing accident at work. I was working in Aged Persons' Mental Health October 2005. I tried to stop an elderly gentleman from falling and hitting his head on a tiled floor (the hospital hierarchy told me that I should have let him fall!).

I sustained an extremely painful knee injury. I underwent surgery which was unsuccessful - followed by intensive physiotherapy and hydrotherapy(I now wear a permanent leg brace). My "Rehab" program had me on crutches in a shower with severely disabled people - how's that for duty of care and risk management? I was put out to pasture with a permanent disability. Workcover paid me less than $6,000 for my career (on the grounds that I had a pre-existing condition as a result of a previous knee injury also sustained whilst nursing in NSW).

Since June 2003 I have used all of my savings to support myself (since my husband's wage was minimal). In the interim I have been applying for non nursing jobs - to no avail - even though I have three academic qualifications.

Recently I put my pride in my pocket and went to Centrelink for assistance. I will never forget the humiliation. I have recieved my first Disability payment. Centrelink did not offer me anything. I asked for a referral to Commonwealth Rehab Services.

I want to work. I have heaps of knowledge, experience and dedication. My expertise is mental health/illness. What a weird scenario Mr Howard. I have the skills that you need people to have. I would be invaluable as an assessor for mental health services. QHealth didn't even offer me a position outside of nursing (I realise the difference between State and Commonwealth issues).

Thank you again for this article. You have given me a new lease on life - for up until now my self esteem has been zilch. I have lost my identity. I have lost my love - nursing people with mental health problems.

grannyrobin

Welcome to this posting. Are you an Aussie in the US? Or are you here because of surfing the net re chronic fatigue syndrome?

Whatever the case, I wish you well.
Cheers Kay

kalweb:

I came to the forum because of subscribing to Google Alerts regarding chronic fatigue syndrome.

-grannyrobin

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.

This letter says it all for the people who have silent disabilities. I have Chronic Regional Pain Syndrom that covers all of my back, head and now eyes, it has now travelled inwards to the hips and knees. The frustrating aspect is that a lot of employers don't realise that you are giving one hundred and ten percent to the work place, but because of technical limitations with software and with how our database is designed, we can't do things as fast as others (I work in a call centre). Now, if someone had some commonsense they would have relocated me to a position where I could be more more efficient. *sigh* Just another day of dealing with discrimination against disability bc people just don't want to think outside of the box. I am grateful to be working, but please Mr Howard we have enough challenges just coping with the constraints of our pain and learning how to do things in a different way to reduce our pain and how we could do things one day doesn't necessarily work the next. What we need as disabled workers returning to the workforce is some meaningful and lengthy rehabilitation services which include pain counselling and encouragement, we need modified work environments and mentors who help us on our journey. The last thing we need to have to cope with is antagonistic agressive workers in HR or COmcare, who take great delight in making the system as adversoral as it is.

I agree the best sort of income is from work, but we as people with disabilities need additional support to get there. We can do it, and we will do it, but we will do it quicker with more meaningful and appropriate help.

Thank you Ken...my name is Fiona and have been told I have fibromyalgia. I have been on a workcover claim for almost 2 years and on light duties for the last 12months. Your letter makes so much sense. Unfortunately after being so accomadating with making the effort to return to work I am at the point where I feel defeated. I am a very capable worker given the appropriate rest breaks and flexible hours. I have been trying to negotiate part time work for the last 6 months to no success. I am confident I would be able to manage my life so much better if I worked 2 days per week instead of full time. You have given me a small amount of hope in my very dark world to know that there are people even with this dibilitating syndrome putting the effort in to fight for others in the same situation. Again thankyou...Fiona