In this article I want to discuss an aspect of the standardised procedures set by service providers in facilities that serve people with disabilities. More to the point, I am keen to explore how this affects the ethos of service delivery for people with severe or profound physical disabilities within such shared supportive accommodation.
Let me be utterly frank. The ethos of service delivery, in this house where I live, has lacked key attributes that are necessary for caring for people with disabilities. Admittedly, I have sought to draw attention to this deficit by a constant effort to raise awareness. And an organisation’s ethos takes time to change. Nevertheless, the jury is still out with respect to whether we are experiencing a positive change. I am concerned that the friendships that I have made with support staff be respected by a form of management that recognises the benefits that arise from the personal synergies that arise from the work done.
There is a simple need of enjoying life as an individual, in a way that is like the individual aspects of dignity that are part and parcel of the much proclaimed “freedom of choice.” I want to ask: has the “right to choose” become a ploy of many service providers? The principle is conveniently displayed in marketing and other public relations material. But is it all a matter of staying on the politically right side of the Government and public opinion? After all, it can be argued by many living in such supportive accommodation that the self-interest of top management has been placed well beyond the reach of the people with disabilities that these facilities are established to serve. But Personal Care Attendants (PCA) are not just an abstract function; they are people just like the people they are employed to serve.
This state of affairs is why I am taking the opportunity of writing this article. Our friendships with PCAs need to be defended. I am a little fired up although I guess some who know me will think that is rather strange. It is true: I cannot wave my arms around and bang my fist on the table. But I am just a little concerned that the message I have been putting for many years gets through. This is serious.
I am a severely physically disabled person with Friedreich’s Ataxia, who presently lives in shared supported accommodation. This place can fail to administer appropriate assessment of my specialist medical and social needs, one of which is human companionship. This place needs to function in ways that allow the clients with disabilities to solve individual problems pertaining to their own problems even if the house is managed under the protocols of a service provider. And the workers should be respected as our friends.
I am quite sure that those managing this place were not expecting me, and I too never expected to be here. But even though we have to make the most of this unfortunate state of affairs, it is not going to prevent me from saying what needs to be said.
The service provider has a real problem. Rather than looking to a set of policies that emphasise procedures that are formed individually with the needs of the person front and centre, they seem to be stuck with operating in a standardised way that at the same time keeps the self-interest of top management of service providers out of sight, and makes continuity with workers difficult.
The standardised procedures simply do not provide adequate support. Even if the standardised approach qualifies as “best practice” under some managerial criteria we, and our day-to-day relationships that sustain us, are simply too complex for an abstract modus operandi.
As a matter of fact, I am not a person with a cognitive, behavioural or developmental disability. I do not take kindly to being treated like one, as I am also sure many people with intellectual disabilities do not take kindly to being treated like a semi-paralyzed person who has to live in a wheelchair. Mistreatment that ignores a person’s humanity, violates the person’s right to be given due respect.
My complaint also has to do with the ethos of the place I live in. Let me tell you what I experience all too often. My friendships with my support workers are unfairly reduced in a variety of ways by the presumptions of management that fail to respect what is going on. Support workers are the first faces we see in the morning and last faces we see at night. It is as if our friendships are simply not part of the implementation of policy. I suspect that this kind of managerial presumption of the disposability of friendship is alive and well elsewhere in social welfare delivery. But I am keen to preserve the friendships that keep me going, even as I find my body slowing down.
I am also not wanting to identify any individual manager – there are some I have come across who come to mind that possibly should be exposed for their blindness and self-interest, but I will restrain myself.
My aim here is to suggest some sustained soul searching among those managing service provision for ‘people with disabilities’.
I’m writing this against the background of a service delivery context that is simply not good enough.
Dr Peter Gibilisco was assisted by Dr Bruce Wearne in the preparation of this article.
Special thanks to Cunxia Li, Patrick Wleh and Christina Irugalbandara.