1. The first question is about the general issues that we face as carers.
Our son's disability has had a number of major influences on our lives and family lives.
- Large amounts of time are consumed looking after our son. We have a large number of long medical and educational appointments. At the moment we have four weekly appointments and countless numbers of approximately quarterly appointments which means that not a week goes by without a couple of them. We use eight educational professionals and twenty two medical professional. Our busiest day so far involved eight appointments finishing at 11:00pm. Often the appointments are so important that we spend the whole preceding evening preparing questions and information for the consultant; and after the appointment I go through the audio recording to make sure I have understood everything that we have talked about, doing follow-up research when necessary.
- The complexity of his disability means that it is necessary for both of us (parents) to attend his medical appointments to completely grasp what is going on with our son. This creates a problem for babysitting for our other two children. Fortunately my mother-in-law is very helpful for baby sitting for us but she is also caring for an old gentleman and so it can be very difficult to juggle priorities some days.
- Both of us (parents) have opted to work part time to care for our family. As we are both public servants this has been relatively easy for us to achieve but severely limits career and superannuation prospects.
- We would like to travel to visit relatives but our son's medical requirements mean that one of needs to stay home with him.
- I find that our son's frequent hospitalisations to be very stressful and I am often sick during or after his hospitalisation.
- His medical equipment, that he is attached to at night, alarms multiple times each night requiring one of us to get up and attend to him or the equipment. He sleeps though the night but only on two occasions in the last two months have we had a whole night of undisturbed sleep. We are expecting that this will be the case for a number of years to come.
- Our paediatrician recently told us that, at this stage, she only trusts three groups of people to monitor/care for our complicated son. Royal Hobart paediatric unit, Melbourne Children's Hospital, and us as parents. While it is good to know that she trusts us, it also highlights that, practically speaking, we cannot leave Raphael with anyone and he must always be with us unless he is in hospital.
We have found centrelink very difficult to deal with. We often find that if we call centrelink multiple times about the same issue, we receive many different answers. It seems as though there is a vast difference in experience and even though we ask very specific and well defined questions such as: "can you please tell me how my carer payment figure is calculated?", the first two times that we called the person told us that they could not tell us how it was calculated and that we are not allowed to know how it is calculated. The third time that we called we spoke to a very knowledgeable person who was very helpful and was able to explain the calculations completely. We have had very similar experiences in the past when we have called centrelink about family tax benefit. I also find that the fortnightly estimate system to be completely inadequate for our financial situation but I don't have time to go into the details here. I would much rather that it be calculated by financial year like family tax benefit.
2.The second question is about applying for carer payment.
Applying for carer payment was quite stressful and frustrating because of the tight deadlines involved.
After we found out how severe our son's condition was we spent a lot of our time going to medical and educational appointments.
When I found out that we might be eligible for financial aid from the government I called centrelink. It took many tries to get though because the number was usually engaged. After I managed to speak with someone they advised me that we would definitely be eligible for Carer allowance (because of my son's diagnosis of CHARGE syndrome) and we might be eligible for carer payment pending a doctor filling in a form about the severity of Raphael's disability. Then I was told that the payments are only backdated to the time that I made my first enquiry; and then only if I return the completed form within a fortnight from the time that I contacted centrelink. It is not like Raphael only needed additional care from the date that I called centrelink so I can't think of a good reason that it should not be backdated to when he was born.
In addition, a fortnight might sound like plenty of time but when you have to allow a couple of days for the form to arrive in the mail, a couple of days to book an appointment with a doctor, and a couple of days to post the letter back; it doesn't leave much time to fit the GP doctor appointment in amongst the myriad of other doctor and educational appointments that it was necessary for us to attend.
We only just managed to fit the appointment in on time with our GP and fortunately the actual process for her to fill in the form was quite straight forward. I can't say that I remember all of the medical requirements although I remember that I did understand what they were about at the time.
From my memory questions on the form to apply for carer payment seemed to be mostly based on medical requirements and very little based on educational requirements. Even though we maintain private health insurance, Hobart's only hospital for children is the public hospital and so we have relatively few medical expenses. On the other hand many of our special educational expenses (especially physical therapy and language/sign-language training) are not subsidised and so these are very expensive for us.
The final thing to note on this topic is that once we had submitted the form, a person called us to say that it was the best/most completed form that this person had ever had received and thanked us for our attention tot he fine detail. Even though this may have been the case, we received a call a few days later asking us to submit more information.
3. The third question is asking for comments on the eligibility criteria.
I can't say that I have any firm opinion on whether the eligibility criteria are appropriate. I don't want to profit, financially, from my son's disability but I am grateful for the money because it has gone towards therapies, technology, and conferences that we would had had to pay for by ourselves otherwise.
The Cynical bone in my body notices that if I spend a lot of money and time on my son then he may improve as he gets older and possibly void my eligibility for the carer payment, and all the other more substantial benefits that come along with it. Of course my intention is to do what is best for my son regardless of whether I receive or don't receive any aid from anyone.
The income assessment for carer payment is absurd. For instance, I have a house loan and money in an account offsetting the interest payable on the house loan. Under the current calculations the money in my offset account is deemed to be earning me interest (which of course is not true) and an arbitrary amount of money is calculated as income earned from this money but the interest payments on that loan are not considered. If I paid off the loan, with the money, then we would receive more carer payment; even though we are not worth more or less than before. The only difference is that we would be less flexible with regards to our cash flow in the event of an emergency needing a large sum of money.
4. The final question is just asking about any extra information that I might wish to include.
The only other thing that I have not included is the extra brain power and emotional strength that I need to draw on.
It is necessary that I learn Auslan to help my son communicate and have a significant amount of medical knowledge to be able to cope with his every day needs and emergency situations. I obtain this knowledge from both informal sources and formally from training courses (such as first aid training). My opinion is that the costs associated with purchasing training and educational material does seem to have been considered in the way that the carer payment is made as the focus only on the medical requirements.
You can read in detail about my son's life so far on a detailed blog that I keep at:
http://raphaelincharge.blogspot.com/
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