In light of the implementation of a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, I wish to shed light on the issues faced by individuals in shared supported accommodation facilities. In particular, it is important to note the standardising of support which, over time, ultimately leads to dangerous outcomes for residents. My experience in living in a shared home for the past eight years is testament to this, and I have written about it extensively in my latest book. The following are relevant excerpts from my book, rewritten under the context under the Royal Commission.
How the diversity of people with disabilities is ignored
The State Disability Plan is not the only endorsement of the need to emphasise individual care for people with disabilities. We now hear of a profound new development – person-centered planning – which is said to be the worldwide benchmarked best practice. This involves a highly individualised vision of the person with disabilities, resulting in care needs that multiply into a kaleidoscopic variety of individually generated special needs and concerns.
This attempt to generate a sensitive and compassionate approach nevertheless faces an ongoing dilemma. The costs associated with such an approach to the provision of disability services continue to outstrip the services that can be provided by the pension. Moreover, the demands (and possibly the false needs as well) that are generated by this latest example of neoliberal micro-reform of the ‘disability workplace’ have the effect of further transforming the already precarious environment for care-workers and the residents.
There are many residents, perhaps an overwhelming majority of up to 80 per cent or more, in supported accommodation with some form of intellectual disability. Therefore, it can be expected that in shared-supported accommodation, such as where I reside, for many service providers where there is a policy of taking on high-demand people the result will be the standardisation of disability care. Don’t get me wrong, the intellectually disabled are also my neighbours and they deserve proper care. But by putting all people with all types of disability together in one facility, even if there are different classifications on paper in a provider’s policy documents, there will be an inevitable drive towards standardised care and abstract efficiency. This may allow the provider to continue its ‘service provision’ but it will be at the expense of the individualised care.
Quite seriously this is what I fear will happen. Without appreciating that residents are genuine members of the community that the service provider is maintaining, a policy will develop in favour of standardisation over the appropriately differentiated individual care needed for people with severe disabilities in shared-supported accommodation.
Disability service providers are given substantial sums to provide for the care of people with disabilities. These payments come from a variety of funding sources, including from government payments, and donations from both not-for-profit and for-profit companies, as well as from the public. Among residents of such facilities in the disability sector there is a suspicion, deeply ingrained, that these funds never seem to meet the needs for which they were intended. Requiring service provision to be subject to a competitive tendering process means that service providers, which were once considered to be not-for-profit organisations, are now driven to accumulate the trappings associated with business success. This includes providing CEOs and senior management with excessive salary packages, while they remain cut off from the day-to-day reality of the people who use their services.
Like everyone else, people with disabilities are highly individual. This individuality makes life complex. When people with disabilities are recognised for their individuality and diverse needs, the individual treatment they require becomes apparent. That is the moment when due respect is needed.
When I lived in my own home, I used a sling to move myself from place to place. When I moved into shared support accommodation eight years ago I was told that it did not meet their ‘standards’. It was explained to me that another person using this sling had died and therefore it was deemed unsafe. Full stop. Never mind that I had successfully used the sling for 15 years.
Disability services should be encouraged to avoid processes that standardise disabilities. Each person needs to be understood and respected on his or her own terms. I’ve had 15 years’ experience with my sling and I should have been allowed to demonstrate its features, and how it posed no great risk for me.
My disease was progressing severely, but nothing could equip me for the extreme loss of control of my life I was about to face in a shared-supported accommodation facility.
One of my major problems was the situation I faced in having to deal with casual staff. During the last two years of living on my own in Dandenong, I was in charge and managed the employment of caregivers in a direct way. One day, my main support worker was unwell. At short notice I needed to come up with an adequate replacement. I’d heard good reports about a service provider, however, I found that the support worker whom they provided me with was inadequate, mainly due to their inability to understand my speech. Recently, where I am now living, casuals from this same service provider have reappeared on my horizon.
One thing that prompted my move to shared-supported accommodation was my need for 24-hour care. However, I was being left on my own, and thus highly vulnerable, in between the regular times of care. One day in the shared-supported accommodation where I reside, for example, I fell to the side of my wheelchair. The same thing happened on another occasion as I will explain below. But because of the restrictions on my support I was consequently alone, and left in an alarming position.
Just consider: one day, at around 8 pm the staff came to my room to deliver mail; they found me lying half out of my chair and partly on the floor. I had fallen into that position an hour earlier. Unable to reach the buzzer, I was left while vomiting and yelling for one hour. I had just finished dinner.
The move to shared-supported accommodation that occurred did not necessarily mean I was better cared for. In other words: I know very well what care I need. I am all too aware of the vulnerability of my situation.
Recently, in the middle of the night, I was in a very uncomfortable sleeping position in bed, so I called for assistance by using my buzzer. No one turned up. I heard the next morning that those on duty could not find my room key to come and assist me. Then, later that day, my father came to visit. Straightaway he looked at me and asked if I was OK, because he could see I was not. Of course, I asked him the same question back, because it was strange of him to turn up suddenly. It transpired that he had received a call from staff, at 2 am, informing him of the situation, and mentioning that they would call him back if they couldn’t access my room. But since then he’d received no further calls. Understandably, he was worried and decided to visit me.
This episode was irresponsible, especially when they had already contacted him, a 75-year-old, at 2 am! And, anyway, it begs the question: why had the casual staff not been properly informed about the location of the keys?
I’m sorry to report incidents that have caused me immense pain, with physiological and psychological suffering that is unbearable and borders on torture.
Of course, it is easier for those providing services to standardise disability. The manager must remain in control, although standardising the way in which services are delivered causes serious difficulties for those who are cared for, and also for carers. A person’s real-life situation needs to be taken into account.
Service providers of not-forprofit services seem to want to standardise disability to make it more amenable to organisational processes, which can then distribute work tasks according to an economically oriented calculus.
Let me provide another example of another incident when, once more, I fell out of my wheelchair, on Tuesday, 19 March 2013.
It was just after dinner. I needed to empty my bladder, and as usual, my carers set me up in the appropriate way. But in so doing I slumped out of my chair, falling to its side. After waiting five minutes for the staff member to return, I decided to try to make myself a little more comfortable by moving a bit. But that movement had the opposite effect – my body involuntarily flung me forward and… crack. My hip was broken.
The staff member arrived 30 seconds after this happened. I was in great pain and finally managed to convey to them that they should ring for an ambulance to take me to the hospital.
I repeatedly requested that I be taken to a private hospital as I had private medical insurance coverage. But due to my slurred speech and being in a lot of pain they had very little chance of understanding what I was trying to say.
The ambulance transported me to the Dandenong Hospital where I was duly X-rayed and my broken hip discovered. They gave me pain relief leaving me feeling much more comfortable for an operation the next morning.
The operation was successful. However, I had a major problem with the drugs that were administered. I was put on an eight-hourly regime of two tablets of Valium and one of Endone. I have a history of hallucinating with such a high dosage. My issue, at this point, is that no one thought it important to tell me the dosage of these medicines.
My hallucinations were very severe – I imagined terrorist attacks and believed my life was under threat. Before you laugh at me, please try to put yourself in such a situation. It sounds ridiculous but it was extremely difficult for me to get over the emotional turmoil that was created by these terrifying hallucinations.
It has become so difficult for me to express myself and to get my needs identified. Writing as I am doing now is my only way of communicating these issues. Due to my disability, I am not in a position to freely communicate, even on paper. If the support worker is not used to my speech then they have to wait as I reply to their question with my typing speed that sometimes can’t go faster than one word a minute. This is why I require the 24hour care of a primary carer. If incidents similar to those I have recounted here recur, the carer would be aware of my preferences and of my medical history and know my needs. For example, they would direct me to a private hospital since they would know about my private medical insurance coverage, and they would also be able to oversee the medication given to me.
The inadequacies of the current system leading to a loss of control
I am assuming that I am just like everyone else in that when I have a ‘situation’ it is primarily up to me to deal with it. But then there are aspects of my ‘situation’ that most other people don’t have and never will have, so they don’t have to deal with it. There is only so much a person can put up with before it wears them down.
Here I am, then, in supported accommodation for the disabled.
The support staff I presently have cannot offer me the support that I need to adequately confront my situation because they are not part of a one-on-one support system. They may help me live life in a way, but their help does not sufficiently address what I can’t avoid, which is my ‘situation’. I still hope to make a contribution as I struggle to live each day with Friedreich’s Ataxia; I have the intellectual ability to do so, but this is lost on many people, even if this ignorance is based on negative stereotypes that have no basis in reality.
Success for me, like for many others, is an ongoing dream, but I tell myself that I must be realistic. I have had to learn the discipline, the painful discipline, of living within the confining frustrations of Friedreich’s Ataxia and its associated problems, including the social ones.
Please hear me out. I simply want to live my life as much as I can on my own terms; that is, I’m happy, and even eager to play the best hand with the cards I’ve been dealt. This is my first priority. If this seems like a cry, it is not a cry for sympathy, but instead for empathy. Please, please think about that.
Now here’s the ‘thing’. Within disability support, individual integrity needs to be respected. Moreover, an individual’s integrity cannot be avoided. That being the case, if efforts are made to standardise an individual’s care then such standardised support seems to be provided for self-interested reasons. It is sad to say that this is how the modus operandi of service providers like my current disability service provider are perceived, not just by me but also by some of the workers who have to work within their constraints.
When I initially entered my present group home I was as upfront as I could be when outlining the deterioration of my body under this form of Friedreich’s Ataxia. That reality hasn’t gone away for me, but it doesn’t seem to have registered with my service provider. Today, I am now in a situation where my Friedreich’s Ataxia has progressed further, while I am expected to live, function, and continuously make my contributions under the inappropriate protocols and inadequate, impersonalised care. All the while, my personal interests seem to be ignored. In short, the management policies that govern day-to-day life here fail to provide disability care that respects and enhances individual integrity.
Let me go one step further. With regards to my greatest need: in a day-to-day sense I am wanting to assist those charged with caring for me to understand my failing ability to communicate, mainly via speech. My being able to engage in conversation on a practical level is of immeasurable benefit and importance in slowing the progression of Friedreich’s Ataxia. Consequently, I am convinced that one-on-one support, facilitated by self-managed funding, is the most appropriate form of care for me at this advanced stage of my declining capacity. This, I believe, is basic to meeting my individual care needs even at a minimal level.
My support workers in this care facility do not have enough time nor do they have the understanding of my particular stage in the progression of my condition to assist me properly. This is not to criticise them, since they also have eight other residents with very different and varied disabilities to care for as well as me. The support workers from my current disability service provider don’t even have the time to try and satisfy all my needs, most of which are related to my ‘self-definition’ as a professional and are therefore related to my academic pursuits.
Let’s put it logically with this brief definition: a support worker for a person with high-support needs must have the time, patience and empathy to support them, individually.
I have noticed – I have been unable not to notice – that time is a major factor with my current disability service provider’s modus operandi because their form of shared-supported accommodation restricts care for me in my ‘situation’. We have four support workers and nine residents residing in this house at any given time. With the current working ratio of support staff to residents, even a good measure of individualised care becomes an impossibility.
OK, then, let me spell out how I see my needs: I need at least two hours a day for a one-on-one conversation with a support worker. And the support workers here do not have the time or the ability to (learn how to) understand me. My speech is hard even for me to understand even if I know my own intention.
I acknowledge that recently my disability service provider has tried to rectify past situations, but as yet their attempts have not made any noticeable changes.
I have tried to write positively and frankly. It seems now that it is of utmost importance that any ongoing solution will require a support worker or workers to spend more time with me in order to understand me and my disability better. This is the only way they can know what my needs are and how they are to be met. My needs can never really be identified by simply applying a cost– benefit analysis.
I am conscious that I am putting a serious challenge out there to my service provider, and to the employer of all the residents’ support workers.
As I said, I know what I am talking about. Things have got to change. A new attitude is needed to face the reality of caring for those with severe disabilities. I hope this straight-from-the-shoulder piece can help those who should be thinking about these matters. My real need, now, is to exit this place where I have no control over my own life. The people making decisions for me are repeatedly making standardised decisions that leave out the most important factor – my true needs. This has been a recurrent aspect of the last few months that I’ve lived here, and the troubles I have had to confront.
This was all done with the help of my brilliant and lovely academic support workers, Christina Irugalbandara and Ikemi Ivara.