Productivity Commission
SUBMISSION 

dear Sir/madam

I would very much like to make the following points to the Disability care and support inquiry

I have read the preliminary report and I’m still very concerned that the matter of services available to the AMPUTEE section of the Australian community is still not being addressed as it should be.

I was a full time, self-employed real estate valuer aged 40 years old, travelling around Sydney metropolitan area for banks, building societies, etc for mortgage, family law, stamp duty, etc.  Also at this time, I was a Director and Accounts person in my husbands’ air conditioning and refrigeration business.  We both worked very long hours, and my husbands’ business also called for him to be available 24 hours, 365 days per year.  We have two beautiful boys who were aged 9 and 10 years at this time.  Both the boys were involved in winter and summer sports, cubs and learnt piano.  Myself, I also played netball and softball, indoor basketball, aerobics, was studying for my Diploma in accounting (via OTEN) and played piano.  My husband worked weekends as well, so in between sport on Saturday, I also looked after the house cleaning, clothes washing, lawns and gardens.

In October 1995, we finally were in a position to become owner builders and renovating our small single storey 3 bedroom red brick home into a two storey 4 bedroom, formal and informal living areas along with a triple garage and an in ground pool.  You may well ask what this has to do with the submission, however I feel that you need to understand what my family and I have been through. I came home to a half built house, we were living upstairs at the time whilst we guttered down stairs.  We lived in the home whilst we were renovating, which meant once the kids went to bed, we went on with our renovations.  Even when I came home from hospital, we only had the bathroom on the first floor level, so I can to crawl up and down 18 stairs each time.

In October 2007 when my accident happened, I was shutting the boot of my car and a “P” driver not watching where she was going ran into the back of my car (me in the middle).  My right leg (above the knee) was amputated at the scene and was unable to be saved however my life was only just saved by the wonderful doctors at St George Hospital.  My youngest son, aged 9 years of age, was standing beside me and had to run for help.  After a 3 month stay in hospital, and 10 operations later, I was released home, I felt abandoned and left alone to my own devices.

The day prior to my release I was taken for a visit to my home by an OT from hospital, where she recommended I purchase a transfer bench for the shower, so she could sign any release papers.  I was picked up by my husband, after having to hire a set of crutches to be able to leave the hospital.  I also had to ring the local hospital to arrange for the local district nurse to visit each morning to change my dressings.
 
The amount of help we received did nothing to relieve the stress and strain put on my family in regards to running a two storey home undergoing renovations, with clothes washing for 2 adults and 2 kids not to mention bedding and linen, the need for grocery and other incidental shopping, cooking, and child minding including taking them to school plus outside activities.  

Other jobs like putting the bins in and out, picking up the mail, and external cleaning of balconies etc, lawns and gardens.  My boys took it upon themselves to get to and from school, and learnt to say No to invitations (without my knowledge) because they knew it was too hard for me to do.  They would wake me in the morning to say good bye and then I would sleep till they came home.

This hardship was also felt within our business (which was another non-reimbursed casualty), where employees did work without my husband there, my husband had to learn the accounts because I wasn’t there, and my children had to do all the chores including looking after the dogs, cats, fish and an aviary and anything around the house.  It was embarrassing to say, we learnt to sleep in the same sheets for 3 months at a time, the plants died, the garden died, everything was dirty, we used to have to wear our clothing unwashed, whilst they boys also had to carry out everything else from shopping to cooking.  On that fateful day, I lost my job, career, studies, and car, capacity to be a mother and wife, my sporting and social life.  As a family, we lost the second income earner, and I feel that I have lost about 20 years off my life whilst the guilty party just walks free.

In April, 2008 I received my new car, we had paid to have it converted to include a left footed accelerator and now I had a little bit of independence.  Everyone says “you can park in a disabled car space”, however it is most frustrating getting to where I need to go, and not enough parking.  To top that off, people without disabilities also take handicap spots.  About a year after the accident, I read about “The Amputee Society” and they were looking for volunteers for a Peer support group, so I went along to an information day.  This was a real eye opening experience, I found ladies and men, even my age and younger/older who had faced accidents causing amputation.  This was the first time I had ever met an amputee.

Due to the fact that I had been on crutches for so long, I incurred torn rotor cuffs in both shoulders and one really sore knee.    Nearing the 3 year anniversary, a new acquaintance suggested I attend hydrotherapy and deep water exercises.   Unfortunately,  I have had a fall (one of many falls including down 18 stairs)  in which I incurred damage to my remaining knee and now has resulted in me back into a wheelchair.  Bruising of bones can take a couple of months to heal, and now dealing with spurs in my knees and neck due to overuse (wear and tear) and has caused the early onset of arthritis.

I have need had a water leg for swimming and/or for showering, so the past few years I sit on a chair.  I really think that amputees would benefit from falls in the shower/bathroom however, this is a life long problem and need the provision of adequate facilities.

I since have learnt but that the leg I was trying to walk on, was the wrong type of knee and I would never have been able to walk successfully with what I had.  Within 2 weeks of walking on my new “C” leg, I was able to walk 250metes on 1 walking stick, as opposed to the original 90m on my old incorrect knee.  Just one component of my leg was the difference between me sitting in a wheelchair or being able to walk around, and even with 1 hand finally free.  It was a great feeling, one of the most positive things that have happened since November 2007.

In my case, I was really very fortunate that I also had private insurance and income protection otherwise we would have lost the house through no fault of my own.  However, I do know a lot of people who don’t have their own insurance, for whatever reason primarily financial.  But this I do know, for the great honour of being the innocent party doesn’t get you through the forevermore increasing financial strain on the family budget.

The CTP greenslip will reimburse any medical expenses that are reasonable and necessary, however, in an accident like mine, there are a large amount of expenses incurred that isn’t covered, and without our own private insurance, we wouldn’t be able to afford them. 

I have recently received a new socket on my old leg by a new prosthetic company, and had me on a computer C-Leg about 2 weeks prior to Christmas 2010.  The cost of the leg is in the proximity of $80,000 - $100,000+.  Each new socket is in the range of $5,000+.  

There recently has been a computerised knee in Canada which attracts a price tag of approx. $350,000 for the knee alone.  These parts only have warranties for every 2-3 years.  These figures are for the parts only, then there is the maintenance labour, and research expenses have to be added.  There are studies that show when a person is supplied with good prosthetic as soon as practical, they will be up and walking soon, therefore alleviating a lot of other long term health problems.

It is now 3.5 years on, I am still learning about facilities and programs that are available for amputees.  If I had been informed and educated when I first came home, it may have prevent me being cut off from the rest of my life and friends, my added extra injuries, pain, weight gain, mental health, depression and long term health problems.  The feelings of loneliness and low self esteem become your best friend.

After the trauma, then comes reality.  People can say “I know how you feel” or “what can I do to help”?   Being a new amputee, you don’t know what you need until you try to do something then you have to work out how to get around it yourself.  It is a bit like having a baby and everyone tells you how your life is going to change, but at the end of the day you cannot even image it till it actually happens.  Except when you are in an accident, you don’t get any warning, and there is no one there to help you through or support you in our quest for a healthy full life.  After an amputation, you seek opinions and services from qualified consultants, prosthetist or physiotherapist.  The current system disadvantages people who attempt to move forward faster than the system can accommodate.

This is a snapshot of my life today, and my treatment is under the compensable system and not the public system.  Without adequate funding especially in the public system, I can truly relate to how Ms. Hilt felt when she stated “Why does the health system put so many resources into keeping people alive if they then just throw us on the rubbish heap and expect us to stay home?”  There is no assistance in regards to any worries and concerns, so how can we be able to return to some sort of informed normality?

However, if it wasn’t for the accident, I wouldn’t have met some of the amazing people I have met along my journey since.  There are people who have more than 1 amputated limb, without decent, correct fitting and appropriate prosthetics, they are being severely disadvantaged where the loss of a limb is already a big price to pay without being punished with basic componentry.  Modern and technologically advanced componentry should be a person’s choice, as this alone can be the beginning or the end of a new journey.

Each day I seek to find an answer to why did this happen and what can I do to help others who have also suffered similar life changing experiences as well.

In conclusion, the ability to obtain equitable, functional aids and artificial limbs and to make independent and informed decisions with respect to products and choice of service providers. At the very least we should be able to do, as we are the ones who know what sort of “quality of life” we wish for.