I have my health care card back!
In case you were not aware of my Centrelink drama, let me fill you in.
Having CF you have a lot of continuous medical expenses, primarily medications. Each medication typically costs about $40 with the Australian subsidised medical system, and most doctor visits, examinations, routine tests etc generally see you out of pocket about the same. If you happen to have a Commonwealth Health Care Card you get your medication for $5 per prescription, and most doctor visits are 'bulk billed', meaning you are not charged. This makes a difference of about $300 per month, $300 that Katherine has to pay for me. There is a 'safety net' feature of $1500 per year, so if you keep track of all your receipts or go to the same pharmacy all the time you might be able to use it. IF you use different pharmacies (some of my medicine I must get from the hospital, and I often see different pharmacies). Those I know who have tried to use the safety net have found it frustrating.
Anyway, when we came to Tassie in 2003 I finally applied for a Disability Support Pension (which I was eligible for for a long time but never applied for for various reasons). I was received with open arms by Centrelink. Katherine got her job as an ambulance officer student and I had to declare her income every two weeks, within 24 hours of the end of the period. The officers at Centrelink tell me I need to declare what Katherine is taxed on. So what about the salary packaging? Certain payments for our mortgage etc are deducted from her income and is not taxed. A complicated scheme. I was told that if she was not taxed on it then I needed to declare what she was taxed on. This always being variable, sometimes she gets allowance for this or that, overtime here or there, all depending on which station she works at or where she has to go for study.Centrelink staff told me to declare it roughly as I only get $50-$100 benefit per two weeks.
Why can I not go to work like anormal person? Well, it is complicated. I used to do it, I used to work. And what happens is with the sitting down and exposing yourself to many more people and public places you lso pick up more bacteria, and hence get more lung infections. Lung infections also get a really good chance of estagblishing themselves when you sit down for hours at a time in airconditioned air and not moving. I often commuted by bicycle wherever I could (also meaning I always made sure I lived and worked within cycle distance of each other)
When people with CF are young their lungs are not so compromised and they can work for many nonths in a row without getting sick. I used to work for 6-9 months and then get sick and would need to concentrate on getting my lungs back in order. After a few months I would find another job again. Working for yourself was the best option, and that is what I often did. I had a truck business and later on a computer consultancy. I would run with the HAsh House Harriers once or twice a week, go to the gym one or twice a week, ride into work as often as I could (3-4 times per week).
This is not a way to get a carreer! Also, most work places saw me as an emplyee with an annoying cough, finding bits of phlegm everywhere (I hope not, but this is possible!), like on my shirt, on the gorund, my desk, my screen.... And a label such as Cystic Fibrosis people always thought I would not live much longer - with that cough and all those pills!
Many folks with CF are too proud to stop work and hide their cough and not pay attention to their state of health. These people die young! I am 43 for a reason, my body and my health comes first (try telling Katherine that who often has to encourage me to get out for a run!).
After a while, as our lung function declines, we become more sensitive to lung issues. Living with less then 50% lung capacity you have plenty of 'tight' ,moments! My blood oxygen saturation levels are rarely over 95%, they are usually above 90%, and when I exercise they are barely above 80%. HAving that low an oxygen saturation in your blood your muscles are eating themselves for energy. Hence I stay skinny in the arms and legs and not built muscles with all my regular exercise.
As we get older our sugar levels play havoc with our bodies too, often feeling tired or without energy. We need to eat all the time and keep moving all the time. Hanging around the house, going in and out for little jobs, doing domestic duties is all well suited to CF. I do my IT consulting and volunteering from home, and although I am not successful at making a living out of it, it keeps me healthy and helps out the community.
Anyways, back on topic... As for my own Centre of the Universe consulting work and Coughing the Distance work I could not declare that money to Centrelink as it is not from one registered employer, it is money I get from different customers. Hence I have to submit profit and loss statements each year. Instead of working Centre of the Universe I just volunteered my time to friends and Katherine's colleagues and started volunteering a lot. I help with the Lillico Penguins, the Lions Club, various committees here and there, help out the ambulance service where I can, do websites for organisations, the Hash House Harriers, the Lions Club etc.
Then after 4 years, during which I apparently got about $11K I was asked back $7K or $K8 depending on who you listen too (there is confusion!) because they cross checked with Katherine's tax records and found I had mis-declared it. I had to include her salary packaged income as well. A review showed that even if they deducted her salary packaging I had still under declared her income.
Her income grew every year as she progressed from first year to eventually qualified after three.
I checked into the benefits I was eligible for and discovered i was eligible for an education supplement payment of $60 per fortnight irrespective of our income. I studied for 2 years at TAFE during this period. As I am not supposed to catch public transport due to possibility of catching lung infections (and avoid crowded poorly ventilated places such as waiting rooms etc) I am also eligible for a mobility allowance which is supposed to help me pay for alternate transport expenses (car expenses for instance). This was another income independent $100 per fortnight whilst I was studying those two years, and as long as I can prove I work or volunteer at least 15 hours per week. Just for the two years I studied at TAFE would amount to $8K benefit I did not apply for. Why not? Because I did not know I was eligible. I go in and report my change of circumstances every time I do anything like start a new course, go on holiday, or do anything. I went in dozens of times and they never told me, until one day when I did a silly little 3 week course or so and when i went in to report it they asked me if i came in to claim the study supplement... I asked if i could claim in retrospect for the 2 years i did full time study. No, too late.
As I was applying for a mobility allowance now i did not need to worry about the debt till that was resolved. But when i came back from my family reunion in the USA I found a letter from a debt collector in the mail! I immediately called them and arranged $10 per week to go back to Centrelink. How dare they. I was freaking out, this was really nasty of them. I went to the doctor with K and was prescribed Valiums and told to see a psychiatrist! I felt accused of fraud more then ever.
Whenever you speak to Centrelink they tell you they are not accusing you, it was an honest mistake, these are standard letters... The mobility allowance proved difficult to get. The various letters i got from all the volunteer activities were not good enough. Each one had a problem. They were either signed by the wrong person or did not mention specific times or days, or the activity did not qualify... Do they think I sit on my bum the whole day? I could not prove i was actually working or volunteering the whole day and every day, doing stuff. From writing books to organising speeches or writing to people, helping someone with IT, whatever. I never find time to do my fun things such as home brew which stands there and waits to be bottled for weeks on end.
They still treat me like dirt, but at least i now got the health care card back after they spoke to my accountant and my doctor. I also get $75 per fortnight, but that is going straight to my debt on my request. I don't want their lousy money. I never did want their money. I want that health care card to help me pay for my medicine!
Anyway, they were a pain to deal with and I don't wish it on anyone. They are enough to drive anyone into depression. No one goes to them for fun!
The frequency of their non-sense letters - which clearly showed they had not read my replies - was almost as frequent as the Readers Digest mail I get. I play the Readers Digest 'game' of filling in forms and putting stickers in places in the hope of one day winning a prize which they say is around the corner. The Centrelink letters were the saame. If I write the next letter I might one day get my healthcare card back!