Centrelink was the first place I was referred to when it came to seeking financial assistance to help pay for my upcoming medical bills. Since leaving the emergency room all the way back in early August 2015 when it was first discovered I had a brain tumour, my partner had been instructed to take care of me “24-7”. Although he was freelancing from our home office, his work was badly impacted from the stress of our situation, so we went to our local Centrelink office together with the intention of applying for the ‘Disability Support Pension’ and ‘Carer Payment’.
Prior to our first visit, I used Centrelink’s online ‘payment finder’ in order to deduce what options were available for a young couple with no health insurance and a low combined income such as ourselves. On entering my information, 11 different types of pensions or supplements were suggested (all the way from breast prostheses reimbursements to continence aids), from which I listed 6 that would apply to my circumstance. My partner had 14 options, so I was feeling rather confident that I had just saved our Centrelink consultant a lot of time by narrowing down what was applicable to our specific circumstance.
How wrong I was. From my list of 6 options I thought would apply to me, the following was relayed to us:
- Disability Support Pension – Not applicable. A warning for any patients that are hoping to apply for this pension – we were advised by a Centrelink consultant that it is almost impossible to attain. When inquiring about this pension, we were shocked to be faced with the question “how long have you got left?”. I had with me a booklet that was provided by my neurosurgeon that outlined information about my specific type of brain cancer, as well as grim statistics concerning the prognosis, but I did not actually have any written confirmation of exactly ‘how long I had left’. Unfortunately, without a letter from my neurosurgeon stating that I was ‘terminally ill’, I did not qualify for the pension. When I asked “what exact length of time denotes a terminal illness?”, I couldn’t get a straight answer. 1 year? 2 years? Less than 1 year? As long as the letter stated “terminal”, it should be enough (“hopefully”). Never mind the complete loss of hope I would be tormented with each night at the thought of a medical professional declaring me “terminally ill”, thus convincing myself that I should just give up now. The thought of even having to ask my surgeon whether she would even consider writing such a letter terrified me, because if she didn’t have a problem with it, did it mean that I really did have only months left to live? It was a question I didn’t want to raise because I didn’t want the outcome of the answer to impact my goals of beating cancer. So I refused to ask my surgeon and therefore could not get the Disability Support Pension. My advice to other patients that will be faced with the same question if they apply of this funding – make sure you are prepared to be asked this question as you may find it more confronting that you expect. Also its good to note that if you are deemed terminal by your doctor, Form SA473 outlines this as a period of 6 months or less, however this is still unconfirmed by Centrelink.The other blockade I faced in relation to the DSP was the fact that you can only apply for it once your medical condition has been ‘fully treated and stabilised’. I had many discussions about the meaning of “fully treated and stabilised” with several Centrelink consultants and my doctors, however in the end it was decided that I was not eligible for the pension until I had finished the course of radiotherapy and chemotherapy that was planned for me – despite the fact that I was in their office seeking financial assistance in order to pay for said treatment.
- Sickness Allowance – Not applicable. This is due to the fact that my employer had a salary continuance scheme in place in which they would pay me $1,011 per fortnight, which was over the maximum fortnightly threshold of $934.17 for a partnered couple under the Sickness Allowance scheme. As a single applicant, the threshold would have been $1,021. There was some discrepancy amongst the consultants about the conditions surrounding my eligibility; some of the consultants thought that ‘income’ did not comprise of money paid from an insurance policy in place and therefore I should be eligible for this as I had exhausted my sick leave and annual leave payable by my employer, whilst others noted that the money was physically paid to my employer first who then would forward it to me in the form of an out-of-cycle salary payment, therefore it was technically still income from my employer. In the end, after several follow up consultations about this, my application was rejected.
- Mobility Allowance – Not applicable. This is because this allowance is only applicable for travel to and from home and your place of work or study. If you need to take public transport to get to your doctor’s practice or to a hospital and you cannot because of your disability, tough luck – there isn’t a pension for that.
- Low Income Health Care Card – Provided to my partner when he was granted Carer Allowance/ Payment. What does this card entitle you to? Discounted medication (helpful for Temozolomide but not for any supplements as advised by a naturopath which are not considered medications, for example Astragalus Complex or Withania etc). It can also be used for certain concessions such as electricity or water bills so I would definitely recommend applying for this.
- Energy Supplement – Only applicable for my partner. As the Energy Supplement is applied in conjunction with another payment or allowance, I wasn’t eligible for this as I wasn’t eligible for the DSP or Sickness Allowance. However, my partner received this along with his Carer Allowance at a rate of $21.20 per fortnight.
- Low Income Supplement – We were already claiming this through our tax returns at year end.
My partner seemed to have more luck and was advised that he could be eligible for Carer Allowance (a flat-rate $123.50 fortnightly payment for being my full-time carer. Note that this payment is NOT back-paid to the date that you commenced caring for someone – it is a payment you receive from the date you first inquired and subsequently applied for it), a Health Care card (which came with the eligibility of the Carer Allowance), Carer Supplement (a flat-rate, once-off $600 payment), and Carer Payment (which is back-dated to the date you became a carer).
Our consultant from our initial consultation advised that I should apply for the DSP even without a letter from my neurosurgeon and provided us with all the forms we needed to complete and return. Within our pile of forms was a medical assessment for the carer, which my GP needed to complete in order to determine the level of care I needed. I had with me a letter from the hospital stating what level of care I needed (it literally stated I needed someone with me 24-7 in case of another seizure occurring), however this letter was completely dismissed as, as you will learn, Centrelink can only accept the forms they provide and create a profile of your circumstance based on the boxes you’ve ticked. So when this form was completed with all honesty, that being, that I was dependent on somewhere being with me only when I showered (since my initial seizure occurred when I was alone in the shower), I was instantly rejected. When I returned to ask what I am supposed to do next, the consultant I saw advised I should return to my doctor and have her fill out the form again “with your worst possible condition in mind”. It was not about what care I currently needed, but thinking about what care I could need should the worst happen (i.e. I was advised to imagine I was completely incapacitated from the effects of radiotherapy/ chemotherapy and think about how much assistance I would need at that point).
When inquiring about Carer payment, it’s important to note that eligibility is assessed based on combined income. This policy frustrated me as I thought my friend received this payment when she was caring for her mother and therefore could not have had her income assessed as combined with her mother’s (this was my mistake – she later corrected that she only ever received the Carer Allowance of $123.50 per fortnight). But it still raised the question for me – what if my partner was instead a distant relative? Or a neighbour? Someone who could not possibly be assessed as ‘combined’ with me… when my partner’s payment was significantly impacted from our combined income calculation, I started to realise there are probably many people that figured this out before applying for their ‘completely un-related disabled person of interest’.
The reason my partner’s payment was significantly impacted was because, although I was not working at the time, my employers were in the process of negotiating my ‘salary continuance’ payments through an insurance scheme they had in place for instances exactly like mine. This meant that I would still receive a monthly salary at a discounted rate (as is common with most salary continuance schemes). So instead of being assessed as an individual earning $0 each fortnight, my partner was assessed as a member of a couple earning $1,011 each fortnight, which was very close to the cut-off rate of $1,198.20.
To make matters worse, an outstanding admin issue with the IRD in New Zealand was picked up by the ATO, which in turn caused my partner’s payments to reduce even further. This was despite the fact that we explained, with all documentation necessary, that there was no outstanding debt existing in New Zealand and it was a mistake that we were in the process of clearing up with the IRD which had nothing to do with the ATO. Unfortunately, when dealing with two different government tax collection departments, you quickly discover that no communication exists across borders and all your correspondence gets lost amongst god-knows-what sub-departments.
Our journey through the red-taped abyss of Centrelink’s system was an exhausting process considering it takes several days or even weeks to get responses for the forms you submit. My DSP application was (expectedly) rejected. I then was advised to apply for Sickness Allowance which was also (expectedly) rejected. I then inquired about the Medicare ‘Safety-net’ which was also not applicable (as a lot of the expenses I had accrued existed due to emergency dental work that had to be performed before I could start radiotherapy, which is not covered). I then had to endure several consultations with doctors and nurses to assess whether I was actually disabled/ in need of care. Then we were called in for a ‘random review’ process straight after our carer payment came through, which seemed awfully suspicious despite the auditor’s reassurance that it was completely random (albeit “extremely unusual” for us to be considered for review purposes so early on).
In the end, not only were the payments we would receive from Centrelink not going to be enough to keep us afloat, we started receiving weekly invoices for foreign debt that didn’t exist. So began the tireless efforts of responding over and over to different heads of different departments with letters explaining why we should not be receiving these invoices, which were then followed with harassing phone calls. To this day we are still in the process of trying to clear this mess up.
I expected the staff to be equipped with some level of apathy with their customers, as their job is based solely on box-ticking (I can’t blame them for this, I certainly would not be able to turn away a scared and confused cancer patient, so they must need to protect themselves from being too invested in peoples’ stories) but the process was getting beyond ridiculous.
After all the months of filling out forms, waiting for responses, having to pay for multiple appointments with my GP just to fill out more forms (or forms she had already filled out that needed to be completed again as they don’t accept photocopies), and rejection after rejection, I marched in one day and pointed out how much time and money I seemed to be wasting on this endless process. I was upset and tired of having 2-3 hours of my day chewed up every time I had to visit the centre again or be held on the phone for an hour to speak with a consultant that would never give me a straight answer. I gathered three of the consultants I had dealt with in the past and brought them together – I was convinced that I could not be the first person with cancer to walk through their doors asking for help, so there had to be SOMETHING they could do. I spoke as bluntly as I could to them – “I do not earn enough to support my family and continue to pay for the medical treatment I need. I need financial assistance now as choosing between the two is not really an ultimatum. I cannot be the first person to point out how flawed this system is. There must be some form of assistance you can provide to someone in my circumstance… What can I do to get help from you?”.
After months of frustration building up to this point, try to imagine the feeling of disappointment you get when you hear the response of “there’s nothing we can do to help you.”
On reflection, there are things I could have done differently:
- March straight into Centrelink the day I found out I had cancer in order to start claiming ASAP and avoid losing money to the ‘no back-payment’ carer policies
- Ask my surgeon whether “24-7” care was really necessary and force my partner to take up a part-time job if no work was coming through (which was completely unfeasible as my condition worsened)
- Ensured I spoke with two consultants at the same time during the first visit – although I endeavoured to speak with the same consultant each visit, she went on leave and I was forced to go through the whole process again with another consultant who gave completely different responses to my queries, which demonstrated to me that there was a serious lack of understanding about Centrelink’s policies among the staff there
- Fill out each form provided under the assumption that I am describing myself in my worst possible condition or the condition I expected to be in once I got further into treatment, not the condition I was in at the time
- Visited a bulk-billing GP each time I needed a form filled out to save on the consultations I did need to pay for
Truthfully, the last option was viable, but my GP had on record absolutely everything relating to my medical health from the day I was born, and she is a genuinely lovely person who was more interested in my mental wellbeing than charging my every time I visited her, so I chose to see her for all GP-related matters.
Although this entire ordeal felt like a never-ending nightmare and I was convinced at times that Centrelink’s policies exist to make it as difficult as possible to receive support, remember that the staff have their hands tied despite their own genuine desire to help. I knew they felt just as frustrated as me and in their defence they were going through several transitionary issues thanks to the government’s shake-up occurring at the time. This meant that staff were feeling insecure in their jobs and were constantly being moved around to different locations, making it very difficult to deliver much of a customer-service experience.
My advice to anyone that needs to deal with the Department of Human Services due to an illness would be;
- Ensure you keep record of absolutely everything. The dates you spoke to consultants, what their name was, how long you waited in line or were put on hold, how long the consultation itself was, the outcome of the conversation you had and ESPECIALLY what was agreed in the end (i.e. relay back to the consultant what you have understood and ensure you are both on the same page. Any discrepancies, no matter how small, need to be resolved before you end that conversation). Feel free to use the template I’ve provided to keep you on track of each meeting/ conversation.
- Visit your local Centrelink office in person for your first consultation as opposed to calling their hotline. This gives you an opportunity to put a face to their name, for them to get to know you more personally, and to ensure when difficult questions that need to be resolved pop up that they cannot dismiss it or tell you that they will call you back with a response.
- Peruse the Department of Human Services website BEFORE you visit them in person and read through the questions that are contained in the forms. This is something I definitely wish I had done prior so that any questions I had concerning what I needed to include in the form could be answered straight away as opposed to calling the hotline later once I’d read through them all. You can easily access these forms online by searching for them on the Department of Human Services website. I have listed of all the forms and information sheets that were relevant for my circumstance at the bottom of this page.
- Do not be intimidated or feel pressured out the door if you are unsure about anything. The policies in place are complex and confusing by nature – you will be asked the same questions in many different types of forms and you will wonder why they need this information provided so many times. Do not assume that new staff members know the correct procedures as it is likely that they are confused too in some circumstances. Be sure to stand your ground and follow through with any queries you have (and remember to record everything!)
- Remember to have thick skin when it comes to discussing your condition. I certainly wasn’t expecting to be asked questions about my life-expectancy but it’s important to ensure you don’t take it personally and certainly do not let it linger in your mind. Your goal is to get better, so I highly recommend granting a loved one permission to discuss your circumstance with Centrelink on your behalf to avoid the stress of having to deal with them yourself (see Form AUS221).