The National Disability Insurance scheme is a hard topic to discuss. It is very dry and as such it is difficult to discuss it in a way that inspires people. While The Rebuttal may have succeeded in making a dry topic like the NDIS mildly interesting in our article, Two for a Dollar, we feel we must continue to discuss it. It is probably the single most important piece of policy impacting on people who are Deaf and disabled since the introduction of the Disability Discrimination Act in 1992.
To understand the impact the NDIS can have one must hear real life stories. Gary Kerridge brings us here a story of Jack. A man who was a quadriplegic and passed away in 1995. If anything this story highlights just how unfair our society is when it comes to providing for people with a disability. Over to Gary.
I met Jack in 1995. I was working at that time for Options Coordination, supporting people who had physical and neurological disabilities. Jack was a huge man. He must have weighed well in excess of 25 stone. He was a biker and became a quadriplegic after a motor-cycle accident in the Northern Territory. After his accident he ended up at the Hampstead Rehabilitation Hospital in Adelaide. The Territory, at that time, lacked the facilities to provide for his rehab needs. Jack had a typical biker beard with the mandatory tats, He swore like a trooper. But he had a sharp sense of humour. Whenever I had appointments with Jack they inadvertently went on for a long time. We spoke for hours. I enjoyed his company, and I think, at least I hope, that Jack enjoyed mine too.
My job was to organise Jack’s home care needs. He needed help to get out of bed, get into bed, to shower, have his house cleaned and his food prepared. Everyday stuff like shopping and the like needed to be incorporated into his support plan. Jack lived alone in a house that he purchased with the insurance money that he got from his accident. He really wanted to go back to the Territory. However, because his rehab was such a long process he decided to stay in Adelaide.
But by 1995 Jack had had enough. He wanted to go home. He asked me if I could assist him to return home. Now the reality is that to do this all of Jack’s care needs would need to be arranged in the Territory. Like anyone in the world Jack wanted to make decisions and do things that made him happy. His request to have his care transferred seemed to be and was reasonable.
This was in 1995, not really that long ago. I rang the appropriate people in the Territory to get the ball rolling. I explained Jack’s wishes and what was required. To cut a long story short I was told that if Jack wanted to return home he would have to live in a nursing home because the Territory were unable to finance his needs in the short term. They said it might take up to 12 months to get anything organised.
I explained this to Jack. Quite rightly he told me to Eff off. No way was he going into a nursing home. He was furious but refused to let it drop. I told Jack that I would see if there was a possibility to have his funding transferred to the Northern Territory until they were able to source funding to meet his needs. I was told by my boss that this was not possible. It was my turn to be furious. I went into bat for Jack, I ranted and I raved. I asked if we could take this to the Minister, or put something in the media to highlight the issue. I was told no because apparently, according to my boss, my most important job was to protect the Minister in charge of our department.
I even went as far as ringing the Northern Territory Minister for disability to try and get his support. The Minister was quite rude and dismissive and insisted that Jack would have to go to a nursing home if he wanted to return home. We spoke for an hour through the Relay Service. The Minister then just abruptly hung up on me stating that he found the NRS annoying and that he had better things to do with his time. I kept a transcript of the of the conversation from the TTY printout and presented it to my boss. He confiscated the transcript stating that information in the transcript was potentially damaging to OUR Minister.
Meanwhile Jack just wanted to go home. While my boss and politicians covered their tracks, Jack was essentially forced to stay in South Australia against his wishes. He had no Rights, he was a victim of the system.
Jack became very depressed. While we were working to find a way for him to return to the Territory he unfortunately developed an infected pressure sore. It became so bad he was admitted to hospital. I visited him in hospital. He was unconscious at the time. My last memory of him was him laid out, unconscious on his bed, wearing nothing but a huge sheet over his belly. It was an undignified sight. Shortly after he died. His dignity totally ignored by everyone.
Jack paid me the most wonderful compliment a few weeks before he became ill. He said, “Gary – what is a top bloke like you doing working for a bunch or arseholes like this.” To this day it is still the most wonderful thing anyone has said to me. When things get to0 hard I remember what Jack said and it inspires me.
For Jack’s sake I hope the NDIS is passed. Because for Jack the NDIS would have given him total control over his funding. He would not have been at the mercy of idiot bureaucrats who were more interested in protecting the Ministers back. With an NDIS Jack could have just gone, taken his money and purchased his care elsewhere. I will never forget Jack and lets hope that we can find a way to get the NDIS up and running so that people like Jack can enjoy freedom and choice like us all.