The heart-rending story that tells what it’s like to live with a disability, or to care for someone who is disabled, in Australia today. Reporter Wendy Carlisle meets the families the nation has neglected.

The system of assistance for people with a disability in Australia is broken. Carers know it, charitable organisations know it and so do the governments. Now the federal government says something must be done. It’s holding an Inquiry, with the intention of creating a new and fairer system. It’s even considering a national disability insurance scheme. But will the system be reformed in time to save the families now at breaking point?

If you miss the show and have a broadband connection, check out Four Corners on iView to watch it via your computer for the next 4 weeks or so.

We’d love to hear your comments after the show. Did you think the show was well done, and showed the perspective of people with a disability and paid carers as well as that of families? How do the issues raised in the show affect you? Do you think they missed important factors? Post your comments here.

- Ricky Buchanan and the NJW Team

Peter and Debbie in Hawaii


Most people involved in the network contributed with enthusiasm, but there 
were others that preferred to step back in fear that it may fail. I 
observed people not being able to comprehend how Dr Gibilisco, a person with 
such a severe physical disability, could undertake the trip; unfortunately, 
they let his disability get in the way of appreciating his capabilities. 
Also, there was incomprehension about me as the support worker. How would I 
be able to productively assist with the requirements of personal care while 
also assisting Dr Gibilisco with his research work and its complex demands.



Then there was the planning we needed to gain a successful research 
outcome. From the start of the project it was imperative that the focus be 
upon the avenues that need to be followed if the provision of equal access 
is to be achieved – it was that kind of meaningful and useful data that the 
research was seeking to generate. And so we engaged in networking with 
professionals who work within the disability sector and the people with 
physical disabilities themselves, some of whom are determined activists 
working to strengthen equality and rights for people with disabilities. 
These networks were those established on mainland US, Hawaii and Australia. 



There were many favorable responses received and they showed immense 
interest and many gave personal examples to reinforce the need for such 
research.



The overseas research trip incorporated hard work, but it was extremely 
rewarding and with memories I will hold close forever. After returning to 
Australia many people within the various networks expressed great interest 
and enthusiasm. So from this, it can be hoped the people who doubt will 
learn instead to find ways to empower others, whatever their dreams may be. 
Those who are committed already will be further encouraged to lend further 
support to those who continue to carry on this important work.



Dr Gibilisco and myself presented the outcomes on the ‘Importance of Support 
Workers’ at the Disability Professionals Victoria 2008 Conference and 
published the article on On-line Opinion Forum. On both occasions our work 
was received well and the reviews encourage us to keep going.

Government House in Melbourne

He thought I might like to go with him instead of taking a support worker and I said yes – my big chance for afternoon tea at Government House! We were all dressed up ready to go and the manager from the organisation arrived. I opened the door to her. She was dressed up too, but did not make eye contact with me at all. As she came in she ignored me and walked past me into the kitchen and started talking to my partner. I thought she was a bit rude but that was all. Suddenly she said to me in quite a bossy way, ‘I want a cup of tea before we go’. I said ‘yes’. There was a brief eyebrows raised moment between my partner and I that she did not see – and we were communicating that we knew she was assuming that I was a support worker. Not only that, but that she had a right to boss me, his support worker around as if I were a menial servant. Somehow we communicated to each other that we had decided to play along for a while. I got the cup of tea and put his jacket and scarf on him, got his wallet, medication etc and went out to the driveway with him to assist him into our accessible van. She was still ignoring me and talking to him as if I didn’t exist. Just before I pushed his wheelchair up the ramp of the van I decided to kiss and hug him – which I often do at this point. I thought ‘why should I censor my behaviour because of this woman?’ What I hadn’t realised was how shocked she would be – she just stared at me in stunned disbelief. John just smiled at her and said ‘Julia is my partner!’. We really enjoyed that moment, and still laugh about it.

There were so many assumptions here and I discover in talking to support workers they quite often get the ‘butler’ treatment! I wonder how service users experience others deciding what their support worker will do? Here are some of the assumptions:

• It is ok to order someone else’s support worker around without checking with the service user first.
• Support workers are not worthy of polite treatment and need to be ordered to do things.

The support worker is available to do work for people other than the person they work for.

• The service user does not have a role in deciding how others interact with their support workers.

Peter and Deb Working

In the report such a pursuit is linked to the worthy aspirations of the Person Centred Approach (PCA). However, the goals of such an approach are shown to be somewhat idealistic when support services work with severe disablement, which covers a large portion of those needing support. In reality, the implementation of support for severe disablement is limited by political processes that require a standardised response.

People with severe disabilities want and are competent to perform the majority of human activities, with the help of a skilled and empathetic support worker. The goals of Victoria’s State Disability Plan are to ensure such needs are adequately met; at least that is what it implies.

These rhetorical goals are to provide a person with a disability the required essentials that mean people with disabilities have choice. I can pragmatically acknowledge in Peter Gibilisco’s case, human assistance is the most flexible and capable method of support. For example, there are infinite amounts of human problems that arise, and by ensuring empathetic and pragmatic support, that is, to assist in implementing the measures of the State Disability Plan. That will mean pathways are opened to help people with severe disabilities reach their full potential whether in work, education and relationships.

My name is Debbie Mackenzie and I am the major support worker for Peter Gibilisco. In the past 2½ years my support role has increased, becoming more wide-ranging and flexible in the duties of personal care, through to challenges that have helped improve the quality of his life. The following explains how this has worked. I want to emphasise the importance of a person-centred approach in all practical aspects of support care.

When I first came into disability support I had no idea of what to expect from the practical side of disability. There were many differences from what I was taught in theory, and since I come from the aged care sector I knew I would need to change my way of thinking in order to serve in the arena of disablement.

Initially I did not understand how working within the disability sector could be so different, but I soon realised the differences were huge. They were huge in these ways: of course there is an age factor; but also there is a much more intense emotional factor. I could see there was so much more living to be done. For example, there needed to be more community inclusion and opening up of choices for living. This is known to have a positive effect, at least in Peter’s case, and should greatly improve the lives of many directly effected by severe disability.

I attended Peter’s PhD graduation at the University of Melbourne as his support worker. What a privilege that was, just to attend, and it was so inspiring to have the knowledge of the many obstacles Peter has overcome and while never forgetting the big picture. So yes, this is the first image of what I could see of his “Dare to Dream” approach to life.

Then gradual changes started to take place in Peter’s life, such as the much required and fought for increase in the needed hours of human support services, through more flexible hours and a pragmatic person-centred approach. This was how my life started to evolve more around the study and the pragmatic diligence of disability work, and I loved it!

Peter was losing his ability to project his opinion at conferences and forums – his voice was weakening and his speech impaired and slurred. Therefore, Peter sought advice from those at ComTec, who helped him out significantly by installing programs in his lap-top computer that could adequately project a suitable voice. The ability to communicate more freely at such events has considerably furthered Peter’s self esteem.

The boost Peter gained from technology also allowed him the ability to further his professional contribution in ways that a knowledgeable and empathetic support worker can readily assist. I learnt very quickly the required computer skills that would assist Peter’s quality of life. However, no training can explain where the boundaries are: these I worked on myself to enable me to work in a professional, yet empathetic, manner. An example of this is given in a quote by Ed Roberts when talking about his support worker Jonathan Gold in the 1994 book To Live with Grace and Dignity, edited by Lydia Gans:

While Ed easily says that his attendants often become his friends. Jonathan is more reticent and will plunge into a philosophic discussion of what friendship means. Does it mean wanting to do the same things? Ed likes to go to the A’s games while Jonathan wouldn’t dream of spending his time watching baseball. After mulling it over for a while, Jonathan agrees that they doubtless are friends since their basic attitudes towards life “probably are in harmony”. More thought leads him to admit that there is a love between them which is a “spiritual thing” and for him the work itself is, ultimately, the expression of that love.

I attended a study tour to Hawaii with Peter early this year. I learnt so much from this experience and I have also attained many valuable attributes from the experience. It gave me the opportunity to work in Hawaii, and allowed me to gain the organisational skills to get him there and help him pursue his dreams. The trip took an entire year to plan, as there were so many obstacles to work through, but when I saw Peter’s determination to get there and really enjoying it, this became a vehicle for change that drove me.

Attending conferences and forums with Peter empowered me; I wanted to learn so much more about the disability sector. I was a successful recipient of a Department of Human Services Scholarship to further my studies in disability work. I am a second year student and with the assistance of Peter’s mentoring skills I expect to complete this and further my career within the disability sector.

In the next section, the paper will discuss the opinions of two highly intelligent people, from the USA, with severe disabilities and looks at the issue of how support workers are undervalued by many in society.

Related pitfalls in an American context

Dr Don Parsons is an outstanding independent scholar and author who was diagnosed with Friedreich’s Ataxia in 1971, and despite this graduated with a PhD in 1985, from the University of California in Los Angeles.

From his sufferance, and his knowledge of the progression of Friedreich’s Ataxia, he is clearly entitled to the respect he has earned for his scholarly and pragmatic views about the political economy of support workers.

Dr Parsons practically and scholastically believes that the ability of a person to effectively communicate and interact with their support worker is of the utmost importance. The disability system of support is focused on the wage relationship so a support worker should, in theory, provide the minimum of personal care and maintenance. All else is, he believes, due to the relationship that the disabled person can develop with his or her support worker.

There are also certain constraints, usually in terms of time, that appear to be inherent in the system. For example, if a person in need of support wants to attend some conferences they may be unable to do so because he or she is unable to vary the established hours of work by the support worker to a sufficient degree.

Now we acknowledge the thoughts of Professor Yvonne Singer concerning support workers. She has suffered with Cerebral Palsy since birth, leaving her severely physically disabled. Despite this she is currently an online professor at two universities in the US.

Professor Singer pragmatically justifies the reasons for a shortage of support workers in America. She believes one of these is that the actions of a support worker are not given any value in society. Many in society, therefore, do not value the disabled and equally do not value actions which help the disabled achieve.

This is only further exacerbated by poor training methods, low salary and no benefits. Singer also commented on the poor work ethic of support workers within the disability industry, due in many ways to budgetary cuts and the flow on effects of poor administration.

Australia benchmarks a sizeable portion of its disability policy from the US, whether it pragmatically works or not. Now in this paper we would like to leave you with something to think about. The question remains: are disability support workers as undervalued in Australia as their colleagues are in the US?

Vince and Gus at Melbourne's opulent Crown Casino.

They say if you have a couple of good friends in your life that you are very lucky.

I feel blessed to have had rewarding relationships with some of my Attendant Carers.

Each relationship has had a unique value to it and along with my wife Rosanne helped me achieve many goals that I would never have attempted.

Besides spending much of my time with my wife Rosanne, I would also spend 5 to 7 days a week with Gus who is my major attendant carer, he starts at approximately 8:30am, doing 3 shifts a day and finishing around 10:45 pm at night.

Gus and I have shared a mutually respectful partnership; that is performing his role as a attendant carer and I the client of the services he has provided, since April 1998. During that time we have kept a strong working relationship while being open to allowing our friendship to grow. Gus is like a great big Teddy Bear to my Rosanne and I, and we can’t imagine life without him around.

Gus has literally become a part of our extended family.

Gus and I were born in the same year and share a wicked sense of humor. We haven’t had an argument in our ten years together and I consider him amongst my closest friends. Gus and I share a bond that allows us to almost read each others mind, for example, while doing things together we are often thinking the same thoughts at the same time. That is we are so tuned in to each other now that we can start or finish each others sentence when we get a bit tongue tide.

Vince and Gus on stage as Gus receives his Darebin Citizen Of The Year award in 2005.

Going away together as a threesome, Gus helps make the trip enjoyable taking everything in his stride. The three of us often go to movies, exhibitions or live shows together as friends, Rosanne looks after me during the show so we usually split the cost between us.

With the help of my wife, Gus and other attendants at meetings I worked on during 2005. I was nominated for Darebin’s citizen of the year award. It was great Gus could share that moment on stage, while I received my award that Australia day.

During our time together we have both lost parents, shared problems and solutions, looked after each other and our dogs. When Gus hurt his knee we found new ways to do things so he could keep working. Gus picks up a paper when getting his own and gives Rosanne a lift when the van is serviced. When shop assistants ask Gus what I want to buy, he diplomatically directs them back to me, unless we have decided otherwise.

Though I don’t like to think about it, Gus and my working relationship will one day come to an end. What I hope will remain is our friendship and all those great memories that I will always treasure. Gus has made a real difference in Rosanne and my life and we look forward to our future years together.

Vince and Gus on holidays together in the Ovens Valley.

Non-verbal clients don't have to be invisible.

It’s not that “because Miss X doesn’t communicate you just do your job and then go home” it’s something quite special and really hard to explain. It’s like you talk and act as if she were your neighbour, sister, friend, whatever (I was going to say perfectly normal, but that’s not right, there is no such thing!) and every so often you get a response that just melts your heart and totally makes your day! I believe, along with most of Miss X’s carers, that we do have a form of communication and that there is a two-sided relationship -it’s definitely teamwork in this case. Perhaps a few examples might help to clarify/explain what I’m trying to say.

Sometimes Miss X doesn’t want to eat her dinner (as soon as you get the spoon near her mouth, head turns the other way. Try a bit harder and you get vigorous head shaking) This is followed by a serious talk about how she must eat something because she has to take her tablets with food. She will then eat exactly the number of mouthfulls of food as tablets to be taken. You then get a look that seems to say “well I’ve eaten what you wanted me to eat, so where’s my pudding?” She actually looks towards the kitchen. Funny but the custard, jelly, icecream, whatever is devoured in record time. HMMM, who’s wrapped around who’s little finger!

It’s great when we go out to the shops. Park the wheelchair in front of a Donut King or Wendys and the smile you get is enormous. I interpret that as “yes please, I’d love a milkshake”. Lunch is always fun too. What ever I think that Miss X will like, is nearly always refused. What I’ve chosen for myself is always much better! Now I just buy a selection and we share. Last time it was Fishermans basket – I got the chips and salad and Miss X devoured the fish, prawns and scallops!

The best example though, was when we were at a shopping centre and I was trying to change her in the disabled toilet. One of those occasions when you need three hands. All of a sudden Miss X was struggling and seemed to be intent on punching me in the face. Because I didn’t panic and admonish her actions, I realised what was happening. She was trying to reach over and hold the grab rail with both hands so she could stand unassisted, leaving me with both hands free to fix up her pad and clothing. What a champion, we didn’t know she could do this until she told us!

Perhaps one of the sadest times was shortly after Miss X’s mother passed away. It was very hard explaining that there would be no more visits to the hospital, and mum would not be coming home, and that mum loved her very much. Sitting next to her on the couch and telling her this, she looked at me with solemn eyes and lent her head towards my shoulder as if to say “I need a hug”. It’s been nearly a year since her mother died, but I still sometimes get asked “for a hug”. I think thats something really special as generally Miss X doesn’t like to be constrained/restrained in any way. I’d like to think it’s because she is asking me for something, not me deciding that it’s something she needs.

Hopefully this makes some sense, although I’m not sure I’ve explained it very well. So much of this relationship is based on intuition and I’m sure I often get it wrong, but one thing I know is when you get it right it makes everything worthwhile!

Terry and James Playing Golf

Terry received five hours of support every week from Vista as part of its federally-funded dementia support program, leading the way in showing how creative support can be.

Terry, 83, was diagnosed with dementia after suffering a stroke nearly two years ago.

Until then, he had been very active. “When we were told the support hours were for whatever Terry wanted to do. I knew that he really wanted to try and continue to play golf”, said his wife Jill.

Every Tuesday, Terry and James head out for a round on the golf course, often playing up to 18 holes.

Golf gives Terry a sense of normalcy in his daily life; a sense of achievement in completing a round,” said Jill. “It also keeps him physically and mentally alert.”

For Terry, it’s also a chance for some male company. “James is very attuned to my way of thinking,” said Terry. “We suit each other really well.”

For Jill, it’s a break from caring. “I was just beginning to feel like I never had a break,” she said. “The program has been great for both of us.”

Maree in a meeting.

I have had many, many workers since 1994. There are a number of workers I remember. These workers usually stayed for a number of years and only personal circumstances made them leave. Alternatively there are workers who haven’t worked out and there are now workers I now tolerate because of the shortage of workers. There are also shifts i.e. morning shifts going to work where the relationship purely concentrates on tasks to get me out the door on time.

Thinking about the “most successful” relationships with workers I would say the relationship had the following characteristics;

There must be a sense of:

• “connectedness”
• the worker will and can follow instructions – without questioning
• similar interest and lifestyle
• willingness to share life stories and events
• understanding about my needs
• High self esteem by the worker and sense of equality
• Not a do goody attitude
• Similar cultural beliefs
• Understanding not all shifts are the same

These are my present thoughts.

As always communication is the key to any relationship, this starts when a Client and Attendant meet for the very first time. It is natural for both parties to feel a bit uneasy at first especially with someone new to Attendant Care work. It’s important to make them comfortable and discuss any fears they may have. Letting them know there will be someone helping and giving one to one training.

I have always exchanged postal and Email addresses, home phone and mobile numbers with my Attendant carers.

This may be frowned upon by the agency, but I find this also helps to enhance communication, fosters mutual trust and respect. I also make it a personal rule to communicate with Attendant carers for only important exchanges of information. This for me means communicating by mobile or emails unless the attendant carers says it’s OK to ring their home number.

I start by informing the Attendant carers that I am married, have a dog and of my disability and all the equipment I use. I explain that I don’t mind personal questions but reserve the right to answer them.

I find out how they feel about dogs and let them know how I want them to relate to our dog.

I next find it helpful for me to talk with the Attendant carer about what they think the job is about and what their expectations are.

I then inform the attendant what tasks I need doing, how I like them done and that my wife will help me with their training, and the dynamics of our relationship.

Vince and Gus working.

I let them know that I will teach them the best way to do tasks with me, learned and refined with my wife and Attendant carers with many years experience with me. That after learning our techniques I would be happy to listen to any suggestions they might have in the importance of working as a team.

I like to get the attendant to talk about themselves, so I can get a feel of their personality.

Discussing our likes and dislikes, and opening channels of dialog that establish a base for our relationship.

Eg:

• Why they have chosen to be an Attendant Carer,
• Are they a night or day person,
• Do they like or hate doing dishes,
• Do they enjoy gardening,
• A bit about their hobbies or interests.

That is discussing these things together at the interview stage means we can start to relate to each other as individuals.

By the time the Attendant carer leaves I will have given them valuable knowledge about how I view punctuality and privacy issues.

Even after they have learned a task, I will still take them through it so I can keep up my skills of directing my own care.

I will be trying to look after their back with techniques I use, as I feel that they can’t look after me if I don’t look after them.

That we have an understanding of what each of us expects and wants from this working relationship.

With this solid foundation established, I believe the Attendant carer, my Wife and I have a better chance of having a respectful and happy fruitful relationship. With enhanced longevity and the possibility of our relationship evolving into something much more meaningful over time.

Gus, Vince, and Rosanne.


Like many, we have got very frustrated with the service providers as they do not provide much help or support and other services. However, if we go to a shopping centre and it is not easy to get into some of the shops or move around when inside, as they have too many things in the aisles.

Both of us have lost our mothers during our time together and Vince has also lost his father as mine passed away before I meet Vince.

We look after each other as it is a two way street as they say not a one way and usually try and help each other out if we have a problem such as look after our dogs and if Rosanne needs a lift to work when the van is in for a service or if she needs to be picked up after work, or if the van goes in for a service I will usually follow her and drive her back home. I usually get the Wednesday’s paper so I get two as one for me and one for Vince and also remember each others birthday and usually give a small gift but nothing over board and the same at Christmas time.

In 2005 Vince was awarded the Darebin citizen of the year and I was lucky to be on stage with him when he received it.

Woven bag I made as a going away gift for a PCA.

Sometimes these gifts and their worth are specific to the carer involved. Once I secretly learned a Russian song and sang it as a “gift” to a carer who was Russian and was teaching me Russian during our PCA shifts. Then we laughed a lot and she explained to me what the correct pronunciation was and I sung it again! Several times I have made tiny pieces of artwork like hand-made gift cards with drawings on them for carers who I knew loved art. I made a 2 inch square woven bag as a “goodbye” gift for a PCA who moved to England after working with me for four years – she was an art therapist as well as a PCA and we did lots of arts and crafts together while she was here, so I knew she would appreciate the little bag.

I’ve often used my computer skills to make up “certificates” for carers who’ve mastered a new skill on my behalf, or while they were here. It’s a sort of “joke” gift because the certificates look like something you might give a kindergarten kid who just learned to spell her name – they aren’t professional or fancy, I just put them together and print them on my regular printer. But it’s something that gives us a chance to laugh together which is always a good thing, and even if the certificate is pretty cheesy it does convey that I noticed and cared.

Other gifts have been about appreciation – 2 Christmasses ago I got one PCA to cut a bunch of silver stars out of thin cardboard we got at the newsagent, and on one side I wrote “Thanks for working during Christmas!” and on the other side I wrote “You’re a star” and stuck a tiny chocolate beetle (the cardboard sheet was $2 and I got a whole bag of the beetles on sale for about $4 and had been waiting for a time I could use them – I think we made about 15). Those were given to everybody who worked a shift with me between December 24 and January 1, because I think working during that time – especially on Christmas day and New Year’s Eve – is a special thing and I wanted those people to know I appreciated that. Christmas has always been a very special time in my life, spent with family, and now that I’m housebound I only see the family during the short time they visit me on Christmas Day. It makes me very happy that these tiny things can make people feel appreciated and really make their day – I’ve had several people tell me on the next shift, or soon after, how much they appreciated it and that they’d put the silver star on their fridge or dashboard.

Showing appreciation can be done with a word or a smile, and it can make a big difference to a relationship.

Simon in a meeting.

I was asked by my co-ordinator to go meet a man, Frank (not his real name), who had been in a car accident resulting in huge injuries. He had been living in a busy, noisy ward in a private hospital for a number of years and was very withdrawn and disengaged from life. The co-ordinator told me he had sent a few carers to try and encourage Frank to go out and enjoy something. All having no luck. “I don’t know if you’ll have any success but give it a bash” my co-ordinator said.

I was introduced to Frank by a nurse. He was laying in bed amoungst all the hub-bub of visiting hours in his large ward. “I’m here to take you out if you would like” I said with all the joy and enthousiasim I could muster. “I don’t care” was his reply. I tryed to suggest a few ideas and “I don’t care” was the constant reply. I told him I was being paid for the shift and if he didn’t mind I would stay and read the paper. His reply was of course “I don’t care”.

For a few weeks I would come and read the paper on the chair at the end of his bed with our only interaction being “Hello” then latter “Goodbuy”. The feedback to my co-ordinator was not well received but he asked me to stay with it. I felt I was doing a poor job but I could not force or badger him into doing something.

On about the fifth visit, half way through my silent stay, he suddenly said in a very gruff manner “If we did go out where could we go?” I looked at him over the top of my newspaper and thought fantastic, this could be the start of something. “We could just go arround the corner for a coffee” and he replyed “OK”.

We chatted and came up with ideas for outings and at the end he insisted on paying for the drinks. The next week it was my turn to insist on paying. He really seemed to enjoy that we took turns to “shout” each other. I suppose it is like what friends do when they go out.

Over the years we went on a great jorney together. I think he trusted that I would not push him into anything he did not want to do. But I would suggest and encourage at times. Frank went on to have many fun outings and many achivements. He shifted into a support residential unit, contacted his son and re-established their relationship, joined a new mosque and went on his first holidays since the car crash. We went on many coffee and lunch outings’ always taking turns to pay.

Frank has done a lot of hard work and come a long way. I am happy to have had a small part in his success.