FACSIA Carer Payment review and stories

Some time ago I filled in a survey on the Carer Payment and was invited to share Raphael's story in a publication to be submitted with the recommendations of the review to the minister.

The recommendations and stories are now publicly available at: http://www.facsia.gov.au/internet/facsinternet.nsf/disabilities/carers-review_carer.htm called the "Carer's Storybook". Raphael has changed a little since then but it is still an interesting read.

Organisations that we have approached for support and/or concessions

(originally compiled: 24/5/2007, added to: 8/8/2007 and 12/10/2007)

If having a disabled child wasn't enough work for you, then trying to find support and services to help your child adds to that load.

Initially it was hard to find any organisations that provide support because we didn't have a starting point. Then near the end of our journey of searching for support we came across an organisation that provided a large list of support organisations. It took Annie days to go through the list to try to decide which ones she would focus on calling. It then took days for each of these organisations to assess whether we qualified for the support that they would provide. We still haven't contacted all of the organisations yet and I think that we are still waiting to hear back from some of them that started their assessment of Raphael weeks ago.

Here is the list of organisations that we are utilising services and/or receiving concessions from.

National and international services:

• Australasian Charge Syndrome Association of Australasia. I have recently become a director of this organisation. The dedicated volunteers that work for it, organise events for awareness, fund-raising, conferences, and activities that can enrich the lives of people/children with CHARGE syndrome. While not wealthy, this organisation finds a way to maintain free membership for CHARGE affected individuals (and parents) while even providing some small financial assistance for its members in certain circumstances. Contact details for your local representatives can be found http://www.chargesyndrome.org.nz/contacts.html.
• Association for Children with a Disability. The website seems to be primarily for the Victorian branch but there is a Tasmanian branch and a Hobart office in Bathurst Street. I am sure that I have not fully realised the benefits that this organisation has to offer but the one thing that we have used from them was their fantastic list of service organisations. It is worth contacting them to obtain this publication called "Through the Maze - A guide through the maze of services for parents and children with a disability".
• Australian Hearing. Australian hearing is a national government service that provided the hearing aids that Raphael is using. These devices cost thousands of dollars so I am very happy that we get them for free. Look for your local branch here: http://www.hearing.com.au/findus.
• Centrelink. CHARGE syndrome automatically qualifies the carer of that person to receive a carers allowance from the Australian government. If the person in question has a disability severe enough and the carer's income is low enough then they may also qualify to receive carers payment. I have found that dealing with this organisation is a significant challenge. One tip that I have is if you don't like the answer that you are given when you call them, then call them again another day and ask the same question to see if you get a new answer that you like better. Keep trying this until you get an answer you like. The financial assistance that they provide is fabulous. If you qualify for Carer's Payment then you also qualify for a concession card.
• RIDBC (Royal Institute for Deaf and Blind Children). For us this service has taken a teacher consulting role with experts in deaf and blind children available to give advice for Raphael's development. They also send us toys to borrow that are tailored to get Raphael's interest and extend his development. The teaching/consultation sessions are done via teleconference at Australian Hearings Hobart campus. RIDBC's contact details can be found http://www.ridbc.org.au/aboutus/contactus.asp.
• Gymbaroo. This is a privately run pay-for-service activity that is like a playgroup with specific activities and equipment designed to stimulate a child's development. There is a national website here: http://www.gymbaroo.com.au/
• The Companion Card programme. To quote their website: "The Companion Card allows people with a profound disability, who require attendant care for the rest of their lives, to participate in community activities and events without discrimination. Companion Cards can be presented at participating organisations where cardholders will not be required to pay an admission fee for their companion who is providing attendant care." Unfortunately not all states and territories participate in this programme at the moment. Only Victoria, Western Australia and Tasmania currently issue and honor the card.
  

Tasmanian Services:

• Department of Infrastructure, Energy and Resources Transport Division. This Tasmanian government department is the managing body for disability parking permits. We have found that the disability parking permit has been very helpful with regards to parking near the hospital when Raphael needs to be brought in multiple times per week. They also have a reduced fee for car registration and MAIB (Motor Accidents Insurance Board) premiums for concession card holders.
  
• Early Learning Tasmania. Early Learning is part of the Tasmanian Department of Education and provides an amazing service for children below school age. They have an excellent array of services from therapies to consultations with specialist teachers and all with excellent flexibility with regards to the time that they provide the service and the location. Incidentally they have had a name change ad are now called "Early Childhood Intervention Service".
  
• Calvary Health Care Children's Therapy Services. This is an outsourced service from the Tasmanian health department. They provide physiotherapy, occupational therapy, and speech therapy for Raphael. This service is quite different from the Early Learning service in that Calvary is geared up from a health and physical development perspective where as Early Learning has an education focus. There is some peculiar rule that means that we are not supposed to utilise both services at the same time so we are going to have to choose one of them over the other. The only explanation that I can think of for this strange rule is that the governing bureaucrats must have little idea of what is actually happening in the therapy services for children.
• Home Care (home and community care - HACC). HACC is jointly funded by federal and state governments. Here is the website for federal information. We get domestic cleaning assistance from here which frees us up to spend more time with Raphael.
• Community Based Support (south). This organisation receives funding from HACC. We receive limited respite assistance from here because this organisation is low on funding, but it has been very good for Annie. We have also utilised a gardening and spring cleaning service from this organisation, which was well needed, because cleaning was one of the first things to be dropped with Raphael's time demands.
  
• Disability Services. This is part of the Tasmania's government health department. Raphael has been accepted as a client of Disability Services and they have been instrumental in organising ongoing respite. We are also in the process of applying for a home improvement to help Raphael once he starts to walk (a rail for our front steps)
• Early Support for Parents. This is a volunteer home visiting service that helps "anyone with the care and responsibility for children, especially families experiencing stress". They don't seem to have a web presence but they have some contact details here: http://www.police.tas.gov.au/community/child-protection/parenting-support
  
• Aurora Energy. Aurora is the electricity service provider Tasmania. Holders on a concession card receive a power bill concession if you apply for it. They also provide a concession for people who use certain types of medical equipment in their home.
  
• Department of Treasury and Finance. This Tasmanian government department claims to provide land tax exemptions to concession card holders. We have not realised this benefit yet becuase we did not hold the concession card at the time that our last land tax was payable.
• Royal Hobart Hospital (RHH). Raphael was born in Calvary hospital which actually made it a little difficult with regards to leveraging some of the RHH outpatient services. Fortunately our Paediatrician pulled some strings and made it possible for Raphael to use the services from RHH. The professional staff (consultants, registrars, therapists and nurses) devote an amazing level of care and time for Raphael and us.
• Hobart City Council. Our local city council provides parking concessions in the city car parks for holders of concession cards. This has saved us a lot of money because the Argyle Street car park is the only practical parking solution for when we go to the Royal Hobart Hospital. HCC also give property rates concessions to concession card holders.
  

I suspect there are more services that we receive that I have forgotten about while making this list.

Successful applciation for companion card

Our previous application for a companion card for Raphael has been accepted and granted. We have an interim letter and we are just waiting on the official card to be printed and sent to us.

(yay)

Companion card application

The following are the answers that we are submitting for the complicated question on the application for a companion card.

Describe your need for assistance in the areas of mobility, communication, self-care, learning and planning.
Raphael was diagnosed with CHARGE syndrome on 12/1/2007. Raphael has a number of factors caused by this syndrome that makes it difficult for him to attend community activities and events.

Raphael has respiratory problems that could potentially require immediate first aid and medical aid. Raphael has previously quickly descended into respiratory problems that have required hospitalisation on a number of occasions. Early identification of the warning signs has been important on these occasions in obtaining medical aid in time.

Raphael has propensity to vomit multiple times a week due to nerve problems. Raphael requires assistance while vomiting to ensure that it happens in a socially acceptable way (for instance, not in a public swimming pool as nearly happened on one occasion). But more importantly it is necessary to make sure that his airway is not compromised after vomiting. Equipment to cope with his vomiting (cloths, water, change of clothes, and bags) need to be taken everywhere he goes which he is not capable of carrying himself.

Raphael has no sense of balance, he is blind in his left eye and has vision problems with his right eye.

Raphael's vestibule (sense of balance) is completely malformed and he receives no useful information from this organ. Raphael currently cannot walk and, although it is hoped that physiotherapy and occupational therapy will eventually enable him to do so, his lack of depth perception and decreased field of vision will always make mobility and orientation a difficult task without the aid of someone to guide him.

Raphael has a moderate to severe hearing loss and partially paralysed vocal chords making verbal communication very difficult for him. Raphael uses hearing aids but these cannot be worn on all occasions (for example while swimming or air travel) and his external ear malformation means that hearing aids are not comfortable for him to wear for any length of time. Raphael may be able to communicate with sign language, in these instances when he does not wear his hearing aids, but this will require an interpreter to be with him.

Raphael's paediatrician has said that she only trusts a limited number of people with the care of Raphael because of his complicated medical problems: Royal Hobart Hospital Paediatric Unit, The Royal Children's Hospital (in Melbourne), and us (his parents). Even the Commonwealth Carer Respite Centre refuses to look after him because of his complicated high needs. This effectively means that he cannot go anywhere without one of us being with him.

Please provide the name, date and outcomes of any formal assessments of your condition.

Raphael was diagnosed with CHARGE syndrome by a Geneticist on 12/1/2007.

An Ophthalmologist stated that Raphael has "very limited or no useful vision in his left eye" (7/2/2007) and on 5/6/2007 another ophthalmologist advised us of another serious eye defect in Raphael's right eye that limits his field of vision in that eye.

Raphael has had a Barium Swallow on 17/5/2006 that identified significant gastro-oesophageal reflux and aspiration.

Raphael has had numerous audiological tests including ABR (Auditory Brainstem Response) and VROA (Visual Response Orientation Audiometry) tests to determine his hearing level. He has been classified as having a moderate to severe hearing loss.

Raphael had an MRI scan on 18/12/2006 that identified severe eye and ear malformations including complete deformity of the vestibular semi-circular canals (sense of balance).

Raphael has 25 medical professionals and 8 education professionals who look after his complicated case. We have a whole folder full of reports on his condition. I have summarised a very limited number of the reports here.

Medical professionals:

• Audiologist [RHH & Aus Hearing]
• Dietician
• Ear Nose and Throat Doctor (ENT) (x2)
• General Practitioner
• Geneticist
• Intensivist (x2) [RHH]
• Occupational therapist [CHC]
• Ophthalmologist (eye surgeon)
• Orthoptist [RHH]
• Osteopath
• Paediatric Anaesthetist (x2)
• Paediatric Cardiologist
• Paediatric home care nurse (x2) [RHH]
• Paediatric Surgeon
• Paediatrician
• Physiotherapist [CHC]
• Social worker [CHC]
• Speech Pathologist [RHH (x2) & CHC]

Educational Professionals:

• Deaf/Blind teacher [RIDBC]
• Gross motor skills teacher [gymbaroo]
• Hearing consultant
• Occupational therapist [ELT]
• Physiotherapist [ELT]
• Speech pathologist [ELT]
• Teacher [ELT]
• Vision consultant [ELT]

Carer payment

I (or rather my wife) have recently received a letter from the Carer Payment (child) Review Taskforce with a questionnaire about our experience with the carer payment. I thought that it had some interesting questions so I am sharing here my answers to those questions. I don't want to breach their copyright so I will not quote their questions but I will summarise the gist of them.

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.
  

Receiving the carer payment has actually been negligible compared to the benefits that come with it. The concession card and the maximised family tax benefit (because we receive the carer payment) far outweigh the meagre amount of money that we actually receive as carer payment. We are acutely aware that if we earn too much then we will exclude ourselves from receiving the carer payment (and related benefits) and so I have stopped applying for promotions. We have calculated that it will actually result in a significant financial loss of I earn to much money.

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/

January & February 2007 - Search for support

Armed this “very likely” CHARGE Syndrome diagnosis we started looked for more organised support and found a few things that we wished that we had organised earlier. Did you know that if you look after someone who is disabled or aged that you can get a “Carers Allowance” and possibly a “Carers Payment” from Centrelink (Australian Government welfare). This is turn opens up all sorts of possibilities for discounts on services because you now classify as a concession card holder. The financial benefits that we have found include:

• Carers Allowance
• Carers Payment
• Family Tax benefit changes
• Council Rates reduction
• Land tax exemption
• Aurora bill (Electricity) reduction

And that is just the financial side. There are also services such as:

• Early Learning Centre for disabled children
• Disabled Parking
• A Toy Library for special needs children
• Calvary health care children’s therapy services. This place offers integrated therapies for disabled children (eg speech pathologist, physiotherapy, and occupational therapy)
• All of this and I have still not mentioned the public health service provided by the Royal Hobart Hospital. Even though administrative mistakes are occasionally made, we are very grateful for the free expert services and high level of care that we get through the hospital.

Now we are looking for ways to spend this money to help our boy.

• We are in the fortunate position that it is not necessary for both of us parents to work to make a living and we are in the even more fortunate position that we can both work part time. So now Annie works two days a week and I work three to allow us to spend more time with all three of our kids. Losing a full time salary is of course a big financial hit but we were always planning on doing this for when our kids were little and so it is not a big deal for us.
• So far the only thing that we have spent money on (apart form medical expenses) for Raphael is toys; specifically toys that make noise. Have I mentioned that I hate toys that make noise? Well this is a sacrifice that I am going to have to make. We have a reasonably quiet house otherwise and with his hearing loss we thought it would be good to get some noisy toys so he could get some auditory stimulation apart from us just talking and singing.
• We are thinking about hiring some older kids who sign Auslan to play with him for an hour a day or so although we are not really sure how to go about doing this yet. Not to mention that it feels a bit odd to pay someone to be my son's friend.