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This article relates the experiences of Dean Smith. Dean is a member of the Brain Injury Association of NSW. I first met Dean on May 1st, 2013 at the launch of BIA NSW’s campaign on Younger People in Residential Aged Care. Dean was just 22 when a motorcycle accident left him a paraplegic with a significant brain injury. What follows is in his own words:
"Altogether, I spent more than a year in hospital intensive care and rehabilitation units. This was followed by 3 years in a group home for those with quadriplegia, and then into a Department of Housing flat of my own. This was great! A place of my own! I was there for about 3 years. 
In 1993, with the Australian Quadriplegia Association and 30 other disabled people I demonstrated in Canberra, on the lawns of Parliament House. I led the chant: “What do we want? Independence. When do we want it? NOW.” Not too much has changed today.

My father came to visit from Spain, as did my mum and step dad. During this time my independence grew, I became self-confident and more self-reliant. I also developed friendships and my social network grew. However, I was not looking after myself very well and I was re-admitted to hospital….and the flat was surrendered.

Over the next 6 months I was transferred between hospital and aged care facilities until 1998 when I was taken from Royal North Shore Hospital and placed in a nursing home in Mosman where I lived for the next 12 years, till 2010.

From the time I was 29 years of age until I was 41, I lived with the frail aged folk in a nursing home. Relationships with friends broke down. I was unable to socialise. There were no social activities, only church. Phone credit was my only contact with overseas family and friends. I had no opportunities to study and prepare for employment. I got used to thinking nothing and doing nothing. I switched off physically and mentally. There were no opportunities to become independent and to work on my physical rehabilitation and brain injury issues. And the reality was I would make friends and then they would die. They were much older than me...I just got used to it. I was finally assessed to move in to a specialised neurobehavioural unit at Ryde Rehab hospital. August 4, 2010…I remember that date, no problems.

This unit helped me to regain the functional and social skills I needed to attain a better quality of life and to live the life I would like to live, as independently as possible. When I was in the nursing home, everyone was doing everything for me and this didn’t help me at all. 

I now live in a shared house again where I will still need help with my personal care, BUT I am developing skills now such as cooking and cleaning. This is my new home. It is purpose built share accommodation, which is fantastic.

BUT unlike you, I am still unable to choose who I live with, what furniture I have, when and where I eat, sleep, listen to music and watch TV. And so many other things.

I will soon be going to the gym, building my upper body strength, which will help me to transfer myself from my wheelchair. I am building my social skills, and when I get a computer I will re-establish contact with family and friends. It’s a hard road but I am determined to reach my goals.

"

For me, Dean’s story speaks loudly about why a person centred approach is so important. While Dean is benefiting from the change to a more person centred approach, the last paragraph of his story emphasises the need to be careful with just how person centred the approach really is.

By Paul Raciborski

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