To what extent are benefits mutual?

In this blog’s description we talk about “mutually beneficial relationships” (MBRs) between paid carers and people with a disability, but what does it really mean? And is that the best term for the emotional relationship between carer and client?

This is Maree Ireland’s take on the wording and meaning:

To me the term MBR has been a bit too academic (which served a purpose maybe to “elevate” the relationship) but then it becomes too unrelated to the actual relationship. Going back to the beginning of the project I thought the idea behind the stories was not only to “explain / illustrate the relationship” but also to “promote or enlighten the community” beyond what seems to be the understanding of [the PCA's role] as [doing] mundane personal tasks.

I think the “uneasy part about the relationship” is maybe the equality aspect of it which should exist because of the very nature of the relationship. By this I mean in other professional relationships like doctor, nurse, or teacher, there are clear boundaries set and they are helping you to get well or learn so equality does not necessarily exist within the relationship. Whereas within the disability support relationship the tasks are to assist you with daily tasks similar to what they do in their lives so the “professional boundaries” aren’t there and it becomes a more personal relationship through the very nature of the work.  But then we want to the “relationship” to be seen as professional too.

I definitely agree with Maree that the term is academic and not very clear. So what do I mean when I say it? To me, means that both people get something out of the relationship beyond the simple exchange of tasks-done for money-given. 

Say that my PCA hypothetically became the owner of a robot that could do all of my PCA’s tasks perfectly. If my PCA, instead of coming here, sent the robot then I would still have all of my tasks done perfectly. And assuming the PCA still got paid for hiring the robot to me, they will still have the same amount of money. All of what we get from the relationship that would not happen in the robot example, that’s MBR stuff for me.

But “mutually beneficial relationship” is still a confusing phrase to use. I’m worried about using “emotional relationship” though, lest people misunderstand think we are using the word “relationship” in the sexual sense.

What are your thoughts? Is there a phrase that sums up the emotional components of disability support work for you? Leave a comment in the form below, please!

Cheers,
Ricky

What Does “Mutually Benificial Relationship” really mean? is a post from: Not Just Work

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My name is Maree Ireland and I work at field – furthering inclusive learning and development.

We are trying to set up an information page on our website around people with disabilities experiences and stories (good or bad) of setting up their own self directed approaches, whether they, be self directed planning or funding or self-directed employment. We are interested in seeing if there’s a change in the relationship with your workers. We want to do this to show people what is really happening with self directed approaches and maybe encourage more people to want to try it.

We are keen to get people’s stories and are willing to go and meet people and record their stories either by taking notes or videoing them as they tell their stories.

We were wondering if you might know any people from your trials of self-directed approaches who may be interested in telling their experiences. Alternatively, could you pass this information to people who may be interested in being involved with this.

If people are interested, can they please contact me on maree.ireland@field.org.au.

- Maree

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Four Corners are known for their excellent documentaries

On Four Corners Tonight, the documentary Breaking Point covers families in crisis because of the lack of disability support available to people with a disability.

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

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Field is seeking people who are willing to be filmed for a A New Training DVD. Participants need to talk about their hands-on experience of disability support (attendant care) in their quest for independence.

You will need to be available in Melbourne, Australia, for a production shooting date in December 2009, and the shoot will take up to 2 hours (approx). If selected, participants in will be paid a fee of $100.00.

We would like to hear from:

• People with acquired physical disabilities as a result of road trauma, who use disability support (attendant care).
• People with acquired brain injury as a result of road trauma, who use disability support (attendant care).
• Disability Support Workers (attendant carers) who provide direct support to people with acquired disabilities.

If you are interested you, please contact Maree Ireland before Tuesday 1 December 2009:

• Email: maree.ireland@field.org.au
• Tel: (03) 8686 5628 (between 11am and 2pm Monday to Thursday)

Thanks!

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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.

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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.

Whose Support Worker Are You? is a post from: Not Just Work

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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?

The importance of disabilty support workers is a post from: Not Just Work

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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.

Some Very Special People And Our Relationships is a post from: Not Just Work

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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!

Relationships with Non-verbal Clients is a post from: Not Just Work

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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.”

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