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:

Eligibility

- 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 of 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.

This was originally posted on Tune into Radio Carly.