Where is the dignity in ‘My future, my choice?’

I heard about the shared support accommodation at Dunblane Road, Noble Park, when I initially applied for an increase in my Disability Service Register (DSR). The possibility of moving to this house was suggested as an alternative to increasing what was available to me on the DSR and anyway there were the usual budgetary constraints. This house appealed to me at the time because of its supposed 24 hour support and intensive methods of care and hygiene.

I'm concerned that disability service provision is not just like the state disability plan in which the rhetoric is very fine but the actual resources are not provided. The management tends to adopt an approach in which all types of disability are standardised and this too easily means that all people under care are served in stereotypical ways. My experience of disability is diverse and considerably different from that of others living here.

For example, for fifteen years when I lived in my own place, I used a sling that was not acceptable to the standards of the house. This was explained to me in terms of a situation in which some other person using this sling had died; it was deemed unsafe for that person therefore it was unsafe full stop. But as I have said, I had used such a sling for fifteen years.

I'm concerned that disability services needs to avoid processes which standardise disabilities. Each person needs to be understood and respected in his or her own terms. I have had 15 years experience with my sling and I should have been allowed to demonstrate its features, to emphasize how it posed no great risk for me.

I could enter this house only after a total rearrangement of most of my equipment which I have been using for many years. And all of a sudden, the equipment I had used was dispensed with because it apparently did not meet the safety standards of the new house. Standard procedure is one thing; care in supporting those with disability ought not be neglected. But this aspect of my move have cost me a lot of money and caused emotional turmoil.

Sure, because of very slurred speech, I have difficulties communicating with management, but they should reckon with me as someone who is qualified (I do have a PhD and have studied sociology, economics and management). And if they are not taking my opinions into consideration, then they should know they are making me feel as if I am a person with a cognitive disability. I am very supportive and sympathetic of many clients in this house who have cognitive disabilities, but I am not one. I am also supportive and sympathetic of the workers. They need to be encouraged to take the views of clients – in this case like myself – into account.

Here's a brief statement of how I have had to struggle with a disability and consequent socioeconomic obstacles since a teenager. It was when I was 14 that I was diagnosed with Friedreich’s Ataxia. This is a progressive disease, causing impairment to the nerves and so a failure of timely muscle reactions throughout my body. The messages sent from the brain via neuro-transmitters are slower and weaker than they should be. In turn, muscular growth is hampered, giving rise to severe deformities, limitations and other problems. For example, I have had to deal with severe scoliosis and cardio-myopathy. By 23, I was reliant upon a wheelchair, but now I’m simply too uncoordinated (unco) to make use of an electric one. As you may realise, the condition also leads to severely slurred speech which, by the time I was 40 meant my communication was also seriously slowed. I am also having a lot of trouble recently with my vision as it is becoming harder for me to focus on certain objects. I have lived on my own for 21 years and during that time I completed a double degree at Monash University in Arts and Accounting, then a Master of Arts followed by a PhD in Sociology at The University of Melbourne. And during the years of my PhD I received the June Opie Fellowship from Auckland University and a Melbourne Research Scholarship. Immediately after this, I was awarded the Emerging Disability Leader of the year award from the Victorian Disability Professionals.

One of the major reasons prompting me to decide to move to this new place had to do with my personal well-being. It was no longer safe for me to live on my own. This was basically due to the fact that DHS had held back my DSR for two years. And during these two years, my disease was severely progressing also as a result of the emotional turmoil created through insufficient care.

Basically, DHS would give me $69,000 to cover all of my care. At the time, I was wanting to increase my DSR by approximately $30,000, which would ensure further care on top of the customary care of morning and evening service, alleviating my vulnerability.

Although I have done a lot with my life, DHS still seemed to be opposed to my request for an increase in DSR even though, at least in terms of the rhetoric, “mutual obligation” is a current political buzz word.

One of my major problems is the situation I now face in having to deal with casual staff. During the last two years when I lived on my own in Dandenong, I was in charge and managing the employment of care givers in a direct way. I organised my support staff from On Call. They provided me with staff that I found very inadequate due to their incapability to understand my speech. Recently at Dunblane, casuals from On Call have reappeared on my horizon.

One thing prompting the move to shared support accommodation was my need for 24 hour care. I was being left on my own, and thus highly vulnerable, in between the regular times of care. One day, before I moved, I fell to the side of my wheelchair. The same thing happened on another occasion as I will explain below. But because of the restrictions on my support, I was left in an alarming position.

Recently, on a Friday night I received confirmation that my new DSR was approved. This proved to be a lifesaving matter in so many ways.

Just consider: one day, at around 8pm the staff came to my room to deliver mail and they found me half out of my chair lying on the floor. I had fallen into that position an hour earlier. It left me in a position where it was impossible to reach the buzzer and here I was vomiting and yelling for one hour. I had just finished dinner.

In other words: I know very well what care I need. I am all too aware of the vulnerability of my situation. I just hope my new DSR level can now ensure a better level of safety.

Recently, at about 2.00a.m in the morning, I was in a very uncomfortable sleeping position in bed, and I called by buzzer. No one turned up. I heard the next morning, that those on duty could not find my room key to come and assist me. Later that day, my father came to visit and straightaway he looked at me and asked if I was okay. He could see I was not. Then, of course, I ask him the same question. It was strange of him to turn up so suddenly. Then he told me that he received a call from the staff the previous night, informing him of the situation, mentioning that they will call him back if they are unable to access my room. But since he received no further calls, he got worried and came to visit me. This was very irresponsible especially when they had already contacted him, a 75 year old, at 2am in the morning! And anyway why had the casual staff not been properly informed about the location of the keys.

As I said: I know what I am talking about. Things have got to change. A new attitude is needed to face the reality of caring for those with disability. I hope this straight from the shoulder piece can help those who should be thinking about these matters.