Below is an article recently published on the ABC’s Ramp Up website by Gary Kerridge. Early on in his career, Gary worked as a case manager for a disability service provider and witnessed injustices that changed him. Sadly, he hasn’t seen much change in the last 20 years.
Many years ago I worked as a case manager for an organisation that had the task of assessing and funding in-home support for people with disabilities. These people could be individuals with conditions like Muscular Dystrophy, Multiple Sclerosis or were wheelchair users as a result of road accidents. It was a fascinating job. There was even a bit of romance thrown in occasionally. Two of the clients of the program had Multiple Sclerosis. Somehow they had met and fallen fell in love. Their conditions were so advanced that they were not allowed to drive and I was forever trying to find ways to get them together. Sometimes the male would be so impatient to see the love of his life he would get himself into the car and drive very, very slowly to see her. We discouraged this because he was a danger on the road, but love makes people go above and beyond.
The person I remember most is Max.
Max was a huge man. He had acquired quadriplegia in a motorcycle accident in the Northern Territory. He was tattooed everywhere and, for the most part, dressed in black. He usually wore a Harley Davidson T-shirt and black trackies. He had been riding his motorcycle near his home in the Northern Territory when he had his accident. Because there was little in the way of rehabilitation expertise at that time up north, his rehabilitation happened in South Australia for some reason. This was nearly twenty years ago so the details are a bit foggy now.
As the job went on, each month I reviewed the contracts in the files. Some of these needed six month reviews to make sure all was ok, while others required renewal. The process would be to meet with the client, ascertain need, estimate cost and put a request for support to the boss, who would then have the thankless task of deciding priorities from the limited budget. Support might include meals, showering, transport and even equipment. This particular month it was Max’s turn to be reviewed.
It is fair to say that Max was a rough diamond. He swore like a trooper and had a dry wit. He and I got along like a house on fire. It was 1995 when Max came to me with an unusual request; he wanted to go home to the Northern Territory. He had set himself up in South Australia to be close to his rehabilitation facility. With the insurance money from his accident he had purchased a house in South Australia and had it adapted to meet his needs. Now, after several years, he wanted to go home. He asked if I could facilitate the process.
It seemed a straight forward task. I contacted Human Services in the Northern Territory to let them know that Max wanted to move home and would need care. I provided them with the details of his needs. To my horror, they said he would not be able to as they had no money to meet his needs. They said that if he was to come home his care budget from South Australia would need to come with him. His only option in the Territory, according to them, was to go into a nursing home.
It is never fun being the bearer of bad news, but I had to tell Max. His reaction was typical; “Get f*#%ed”. Who could really blame him?
As a case manager, I was always a better advocate. I decided to go into battle for Max. I mean, if I want to go to the Northern Territory and live there, I can go anytime. I just pack up and go. Sure, it was a little more complicated for Max, but that was his right too. Not just that, he lives in Australia. It is one country, and what country prevents its citizens going anywhere except one under a dictatorship? To me, and I think for 99 per cent of us, this is the most basic of human rights.
So I went to my boss. I explained the situation and asked if his care support money could be transferred to the Northern Territory for the rest of the year, to give the Territory time to budget for Max’s needs the following year. He gave me a flat out “No!” I asked what Max’s options were and my boss said it was the Northern Territory’s problem and they needed to accept their responsibilities.
I must have seemed like the grim reaper to Max because I only ever had bad news for him. I told him what my boss had said. His response was typically expletive laden. All I could do was apologise profusely and promise to keep fighting for him. I was so embarrassed. I could not believe that this was happening.
I returned to my office and identified the relevant minister in the Territory for disability. Being deaf, I had to call him through the National Relay Service and a Telephone Typewriter (TTY). Miraculously, on my first call, I actually got the Minister on the phone. We spoke for about 90 minutes. Users of a TTY will know of the printer. You turn the printer on and have an exact transcript of the call. The Minister was, to put it mildly, not obliging. He refused to even consider funding Max’s support in the short-term and reiterated that if Max came to the Territory his only option was a nursing home. I argued and argued Max’s case, his human rights and so on and in the end the Minister simply said, “This type of call [using the Relay Service] is very frustrating. I don’t have time for this.” And he hung up on me.
The next day I made my weary way to Max’s house to tell him the news. With me I brought a copy of the TTY transcript. I let Max read it. Again he let out a tirade of expletives. I could not even look him in the eye, I was so ashamed. Max flopped his hand on my knee and made me look at him. “What’s a guy like you doing working for a bunch or a#$&*^!es like this?” he said. It remains, to this day, the greatest compliment anyone has ever paid me.
I went back to my boss and tried again. I showed him the transcript of my phone call with the Territory Minister. My Boss still refused to budge. He took the transcript from me as evidence. “Our job,” said my boss, “is to protect our Minister.”
I said, “Is it? I thought it was to support people with disabilities, but what would I know?” and I walked out.
About a week after this conversation with my boss I got a message about Max. He had been taken ill to the Royal Adelaide Hospital. A pressure sore had become severely infected and he had been taken to hospital for treatment. I went to visit Max in hospital. I found him asleep on his back in his room, door open, in full view of everyone with nothing but a sheet covering his private parts. I was shocked. I left, and to this day I wish I had let the nurses know how disgraceful I thought they were for leaving him like that. It was the last time I ever saw him.
The next day, Max died. His body gave out. I am sure he just gave up, tired of the pain, constant struggle and indignity of it all. I wept silently for him. I could not believe that Australia could treat anyone like this.
I left the job a few months later. I have never returned to the same sort of work but have remained in the disability sector. After a quarter of a century I wonder if things have improved. Sadly, I don’t think so. We still hear of people with disabilities who can only have two showers a week. We still hear of parents in their seventies caring for their adult children with disabilities because the care and respite system is totally inadequate. We still hear of young people with disabilities being cared for in nursing homes.
Will the NDIS change this? I bloody hope so. For a rich country like Australia this is Australia’s shame.
Gary Kerridge is deaf and has been working in the Disability Sector for nearly a quarter of a century. He has worked across the sector in a variety of roles and is best known for his work as an advocate and his popular blog The Rebuttal. He currently is employed as the MetroAccess Officer for the Yarra Ranges Council.
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