Pearls and Irritations

Let me be frank. There are many stringencies that have to be faced in the provision of disability support services. We all know this whether we are recipients of in-home one-on-one support, residents, workers or management of disability support services, or even as officials of the Department of Health and Human Services (DHHS). We all are under the pump in an economic climate where there is widespread political anxiety about budget blow-outs and a possible collapse of our financial and economic system. We all know this. So when I make my professional contribution, as a resident of such a health-care facility, my recommendations and pleas are complex.

Many of the problems in the disability support services arise because it seems that efficiency demands a certain generalized procedure. In this case “efficient” means something like: (a person) working in a well-organized and competent way.

And when dealing with disability support, effectiveness  is also a crucial characteristic to be balanced against any “efficiency”. This is the meaning of “effectiveness”: the degree to which something is successful in producing a desired result; success.

I would ask that readers appreciate that I too am a citizen, a member of this polity, one who has paid my taxes, one who has worked persistently to promote the common good. Yes, what I am about to say is framed in my own interest but it is not only that. I am just as much concerned morally as any other non-disabled professional person about the serious state of our disability support services. Unless that is understood then my point will not be appreciated.

There have been developments at the level of Federal and State Government funding – negotiated through the Council of Australian Governments (COAG) – that have brought about significant changes to the delivery of human services more generally and disability support services in particular. I do not have access to a research facility to adequately assess and evaluate all of these. I regularly seek advice from those who may know but I do not want readers to presume that I have mastered all the details of all the complex agreements, contracts and policies that are now in place.

In all this, within the political sphere dominated by neoliberalism comes the mechanism that can negatively impact on social decisions, and that is the way in which policies are freighted with a seeming over-riding criteria introduced by this question: but what is this efficient and effective procedure doing to enhance individual profit?

Some social decisions, concerned with human-related social services are, and should be, unrelated to efficiency.

But there are some gross inefficiencies, I believe, that are part of the disability support sector that have very little, if anything to do, with disability support. More likely is it the support of the organisational and managerial structure that claims to be supportive of disabled people that is benefiting. The management of service providers are required by their own charters to turn a positive result in their financial returns . There are some unscrupulous service providers in the not-for-profit disability sector, like my own, who charging me $647.54 per fortnight in rent, including some shared transport – if it be available – and for food. The provision of food money is allocated to certain support workers at approximately $14 per day for residents in this facility, even though in recent times, I have complained to management about their failure to disclose provision money in their accounts.

Such not-for-profit enterprise will follow the model of service provision that I would call the neoliberal streamline model: to put it simply it interprets organisational and managerial reality in terms that instinctively require financial profit to have precedence over people’s welfare.

One will ask, bewildered, why should a not-for-profit organization need to show a profit? We are a shared supported accommodation residence and we are said to be in the not-for-profit disability sector. Are we simply to roll over and allow an abstract efficiency with little or no room for effectiveness, to prevail? Are we really wanting a neoliberal perspective that affirms that efficiency means money saved, while effectiveness means costs and hence a challenge to ongoing future viability?

This state of affairs prods me to drive home an ethical perspective about residents in shared supportive accommodation. In this house we have 9 individuals with high support needs. In other words what is required for  residents in shared supportive accommodation are processes and resources that overcome a lack of human support. There are a lot of funds paid and even more is required for unmet needs of disability support. But I have come to my matured and well educated perspective, having developed it over many years living in the face of a progressive disability for over forty years.

My conclusion is this: the disability sector has lost its way being caught up in the self-interest of an overloaded pool of management. Instead of alleviating the need for support such a sector is in danger of exacerbating the need for greater assistance!

But all is not doom and gloom. There is a plausible and workable solution within reach to many of the failures to provide efficient and effective disability support. Through the attainable cost savings people with disabilities can actually be empowered. This is evident from schemes of direct employment techniques that have been widely used to positive effect by both DHHS and the National Disability Insurance Scheme (NDIS).

Direct Employment has just been formally introduced into Victoria. I was involved in the initial pilot program. This is a key reform with the Disability Services that many Individual Support Package (ISP) users should consider due to its numerous benefits. It is a person-centred approach to disability, being more positive in allowing one to contribute to the community, enhancing community inclusion.

In July 2013, I was keynote speaker at the Disabilities Support Professionals Conference at the University of Sydney. There I spoke with my computer voice about; Cindy, a 46 year old lady with a severe intellectual disability. She is involved with Direct Employment, her self-planning carried out by family members. As a result Cindy lives a more inclusive life. She is supported by three workers whose rosters, pay, training and other work conditions are managed by the O’Loughlin family, with sister-in-law Christine and brother Darren managing the accounts and finances. Cindy, and her mother Lesley, take responsibility for the recruitment, training and day-to-day management of Cindy’s workers. Thanks to Direct Employment, Cindy is receiving the support she needs, she is happier and is living as an individual in the community the way she chooses to live. Cindy’s family are the professionals involved in her support.

The encouragement of such forms of disability support derived from their logic with a focus upon social coherence.  It is important to ensure that this kind of arrangement is flexible enough to allow some changes in a day-to-day sense, even if complete change does not take place.  The aim is to re-build trust and flexibility in disability supports, thereby creating both community inter-dependence and independence.

Direct Employment offers flexibility, allowing people with disabilities to choose the support staff they prefer, helping them lead their own lives and make decisions for themselves. Direct Employment is better suited to cater for individual needs and lifestyles: it is, after all, an important concern for people with disabilities. Hence it allows for a more personalised approach that is better suited to meet individual support needs than the efficiency-driven of not-for-profit organisations constrained to make a profit. As a person-centred approach, I believe Direct Employment is an important reform that will be the key to the future lives of many disabled people and their families!

Let’s hope so.

Special thanks to, Christina Irugalbandara, Bruce Wearne and Cunxia Li

Peter Gibilisco, B Bus (Acc) Ph.D. (Melb), Honorary Fellow University of Melbourne.

New Book: The Politics of Disability

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