02 June 2010

The cost of having a chronic illness - where's the support for the employed?

I was born with my chronic illness - a skin condition called ichythosis form erythroderma. It means scaly red skin. It's not just a bit of eczema on the back of the knee. It will never go away. And nor will the cost of it.

When I was at the disability conference last week, I asked a question to Graeme Innes AO (Australian Discrimination Commissioner) and Dr Rhonda Galbally AO (Chair of the National People with Disabilities and Carer Council) in response to their reference to the National Disability Insurance Scheme.

My question was:

'I'm all for enabling people with disabilities and chronic illnesses to enter to workforce. But what about financial support for people like me who are already in the workforce? Although I earn a good wage and am independent, the cost of having this chronic illness does not disappear just because I am employed'.

My question was heard.

I didn't say this at the conference, but I don't want a fortnightly pension. I don't need one at this time. All I ask for is a health care card, and perhaps a medical support plan to ease the financial burden.

There is the PBS Safety Net where you are entitled to prescriptions at a reduced rate after you spend over $1200 but I never reach it because I only ever get the essentials for survival.

I get medications that are both covered by the PBS and over the counter. I need creams and tablets such as antibiotics and painkillers (prescribed/PBS) on a daily basis, plus special shampoos, bath/shower creams and lotions, eyedrops, ventolin, antihisthamines and painkillers (not prescribed/non PBS). I estimate I spend $200 - $300 a month on maintaining my health. And that doesn't even include things like cough mixture or other medications when I have a general illness!

I admit, maybe if I limited my spending to only rent, utilities, bills and food, plus savings, and used the money I spend on going out, bands and clothes for medications and treatment, I may be able to afford everything that's prescribed or recommended to me. But I need some quality of life.

I know there are people out there spending far more than me on medication and treatments. I want to fight for them too.

The proposed National Disability Insurance Scheme is currently being discussed in the media and in community groups across Australia. I don't know if there will be a solution to my question with my scheme. I have looked at the key features of the scheme and found the following:


- Principal beneficiaries would be people with profound and severe disabilities (in Australia, approximately 700,000 people) who need assistance with daily living tasks (self care, communication and mobility) while people with more moderate disabilities could also be eligible for some assistance based on their lesser needs.
- People with permanent disabilities acquired before age 65 would be eligible for life, without reference to cause and treated equally based on needs.
- People born with a disability or who acquire a permanent disability through an accident, injury or as a result of a medical condition, including mental illness, would be eligible.
- No fault; the provision of support and care for people with disabilities would be separated from legal action for negligence/culpable behaviour.

Benefits for people with disabilities

- Care, support, therapy, access (although not income support or housing), based on functional impairment.
- Person-centred services and support based on the needs and choices of each person with a disability and their family.
- Case management to facilitate independence, maximise potential and plan transitions over the life course, when required.
- Early intervention a top priority.
- Aids, equipment and home modification needs met on a timely basis.
Training, development and access to work to build self-esteem and reduce long term costs.
- New competitive market place for service provision likely to develop, helping to drive efficiency and innovation.

From these points, I cannot determine whether eligibility is means tested. And for my situation, is a chronic illness the same as a disability, thus covered by these key features?

I appreciate that many of those key points do not relate to my current situation. I am mobile (most of the time, apart from when I have severe infection). I do not need ongoing care (I do need some detailed care when I have severe infection to the point of hospitalisation). I do not need home modification. I don't know what my health will be like when I age. I can't predict the time that my skin condition may not allow me to work.

Right now I find it difficult to get into the public hospital dental system. I cannot get health insurance because of my life-long illness. So I can't really afford dental surgery if the need arises.

While my dermatologists can connect me with branches of specialists for me, I do not have a regular social worker or therapist should I need one. My dermatologists are looking into a health care plan for me, to connect me to a range of allied health specialists, but I suspect I won't be eligible because I work full time.

To receive financial assistance from Centrelink if you have a disability, you need to meet the following eligibility conditions:

- aged 16 or over and under age pension age[1] at the time of claiming, and
- not able to work for 15 hours or more per week at or above the relevant minimum wage or be reskilled for such work for at least the next 2 years because of your illness, injury or disability, or
- be working under the Supported Wage System (SWS)[2], or
permanently blind.

I understand that our taxes need to spread across the needy, and that there are people who simply cannot work because of illnesses and disabilities. There is compensation and support for workplace and traffic related illness and disabilities. People with lifestyle diseases get financial assistance. But why can't there be some sort of assistance for people like me who have a chronic illness and choose to, want to, and enjoy work? I didn't choose to have my illness. I did nothing to cause it. But I do choose to work. Work gives me a great quality of life.

I truly hope the National Disability Insurance Scheme can assist people in my situation who earn a good wage but need financial support to purchase medications and medical treatment.

I put the question out there again.

I'm all for enabling people with disabilities and chronic illnesses to enter to workforce. But what about financial support for people like me who are already in the workforce? Although I earn a good wage and am independent, the cost of having this chronic illness does not disappear just because I am employed.

I hate asking this question. I feel like because I have a chronic illness, and able to work, I should be content.

I can hear people think 'you've got a job, you earn a wage, why are you asking for more?'

I feel like I am asking too much.

Please can you spread the word about this blog entry. Tweet about it. Facebook it. Email it to the media. To Australian Parliament if you want. I'm not asking for more blog followers, but I am asking you, my blog followers to show some support to this issue that I feel so strongly about. You doing so may help someone out.


  1. Hi Carly,
    I dont think you are asking to much at all. I sometimes feel like i'm not entitled to certain things such a use of a disabled sticker, when im having an 'OK day", and i look "normal" however i know at anymoment things can turn bad, due my chronic illness/disability being completly unpredicable.
    I am currently living off of a centerlink benefit, and after rent, bills, health insurance and other living costs, I DONT have the money for my medication which gets me through each day. Many of my medications are PBS, however one of the important ones at a cost of $102 every 17 days is not. I think that you need to purchase just over a 100 scripts on PBS before the medication becomes free for the rest of the calander year. Normally people would not reach this limit, however i went to the pharmacist today and came back with 6 PBS medications, that will last me one through to 3 weeks. I have reached this "limit" each year for the past 3 years and consitantly start recieving PBS medication free around august/september. If I did not have my mother's support and funding, i would not be able to get the treatment i need. I can not even afford the costs of my specialist appointments due to the little amount of money i recieve each fortnight. This was just the same when i was a student too. I think your question is valid, but others that are living on a benefit are suffering too. I dont even have spare $ to spend on myself in regards to clothes or going out etc that is just as much important for your mental health, because before the fortnight ends, i have run out of money.
    I understand your point, and i wish there was more people in situations who dont necessaraly need full time care, or a carer, modifications needed ect that could recieve some more help in various forms. It might already be available, but there isnt any funding to make people aware of what we can be entilted too. People like you and I.

  2. have you looked at the mobility allowance offered by centrelink - it gives you a health care card and an allowance of $80 a fortnight to cover the costs associated with a illness/disability but is for those people who work fulltime.

  3. Great response Jen. Your situation sounds very difficult. Lets hope the NDIS can help you.

    Anonymous - mobility allowance is for people who cannot access public transport. That doesn't apply to me. Thanks for your suggestion though.

  4. That's a huge problem in the US, too. You can only get disability benefits if you are entirely unable to work at any job. It's a very, very extreme standard. And then even when you get approved for those benefits you have to wait 2 years to start getting medical benefits unless you are poor. As though sick people can buy insurance in this country with the current restrictions companies place on us. Hopefully the new legislation will help with that problem.

  5. Very thought provoking article. I must say, I'm pretty outraged that you can't get health insurance!! That's bullcrap, just because you have a chronic illness, doesn't mean that you aren't still able to get other illnesses or have accidents (God forbid) that you'd need medical care for. You should be able to have protection like anybody else. Sorry, I'm ranting a little, but that really got my goat up! What a stupid rule...does that extend to ambulance cover? I have health insurance for my chronic pain condition, the only catch was having to wait a year for treatment...during which the condition worsened. There has been a lot of evidence to show that early treatment of CRPS pain can stop it spreading and getting worse, I do wish that there was some way that the bills for treatment could be settled over a period of time so that people could afford help during the critical time in which it could really help...but my views on that are probably an entire post on their own, lol! I wish I could believe there would be a time when the government would actually provide enough for sick people to get help (as if $6.00 a fortnight is enough for medication, one of my meds alone costs $75 a fortnight!) but the truth is that they'd pay us more to have children. Our government would rather pay for new people than to heal the ones that are already here and that makes my face do this :(


  6. I am in this situation too - sounds like many people are. I earn a good wage and work hard because I enjoy it and I have a certain lifestyle and now a mortgage that I have to maintain. I don't get all of the medications or treatments that I know I need because I can't afford it. My cash flow is low despite the fact that I earn well. I am possibly eligible for the mobility thing so I will have to look into that. I am also currently looking into the multi purpose taxi program which gives half price taxi fares but they ask for a lot of documentation including salary information. I am confused by this because it doesn't mention that it is means tested so I am not sure why they require this information.

    We should get a petition going....

  7. I agree with Rellacafa, it seems very unfair that you are unable to get health insurance because of your illness. And I do think you should be entitled to a health care card, and there should be some kind of small payment twice a year or so for ppl with ongoing health costs.

    Unfortunately though there is not enough funding in many areas of welfare related things, and many people are far worse off than you are. I have been struggling as a full time student and can earn very little before i start losing big chunks of my austudy payments. It's the same deal with single parents. They will often not work because they lose their payments. They do need to look at making work more appealing to people for sure. - Lucy

  8. A health care card at the very least would make a huge impact on a lot of people who live on prescription medication. Our income puts us over the HCC threshold this year (a good thing, in theory), but the difference of $200 over the threshold vs. an increase of $720 in medications isn't really going forward, is it? And, like you, that's the bare minimum to get through the month.

    Then again, you can only spread the butter over the bread so far. If more PBS concessions are granted, who misses out? Are they less 'deserving' than us, who need medications every day for the rest of our lives? It's a hard call.

  9. So true Lizz. When you weigh up the benefits of working vs not working, you can understand why some choose to give up working. Financially, they are worse off by working and that is ridiculous! Being penalised for wanting to work and support yourself is insane.

  10. Yes, I totally understand Carly, especially as someone, like me, who if earning a wage, has always been 'borderline' i.e. earning just enough to not receive discounted health care. My illness costs me quite a lot and is something I can't go without, but since 'I can work' and do, I have to struggle to keep up with this.


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