Trends in disability assistance go through fads, including the new buzz word ‘advocacy’. How does the Commonwealth best determine how best to assist people with disabilities with fundamental assistance needed for daily living while an ever-expanding disability industry wants to provide more ephermal assistance?

1 June 1988 – Speech to forum ‘Public Advocacy – Where we are and where we are going’ to the South Australian Institute on Developmental Disabilities Inc at the SA College of Advanced Education, Bedford Park by Richard Llewellyn, Disability Adviser to the Premier John Bannon

Advocacy in modern society

The concept of people helping one another is not new. Re-affirmation of this once natural process of interdependence is nevertheless important in thinking about the complex problematic systems we have developed in modern society.

The introduction of professional helpers and massive government bureaucracies to provide assistance is relatively new. Within the field of providing assistance to people with disabilities, I would like to address the new area being roped off for new funding by advocacy.

It is my particular personal and professional bias to look at an overall view. I would like to consider where advocacy fits in the concept of assistance for people with disabilities. In recent times, Wolf Wolfensberger shifted the traditional legal concept of advocacy into the human services area. This important thinker has staked out new terms of reference to assist people with disabilities based on the language of rights, normalisation and the least restrictive alternatives.

When language shifts occur however, it is important that those of us who implement these new concepts can clearly distinguish between the left-over baggage of the old definitional context and avoid bringing it unintentionally into the new arena.

Introducing change and monitoring advocacy

During these processes of change, it is easy to develop and market ‘buzz words’. Buzz words are a gestalt of all interests surrounding a central concept. For instance, I find the widely used term, ‘generic’ takes on quite different meanings when used by bureaucrats, teachers or parents, each reflecting their understanding and respective bias.

‘Advocacy’ is also one of those exciting but confusing buzz words which is already receiving considerable attention. If we are to prevent its early institutionalisation and keep it a progressive concept, it is important to be clear about where advocacy has come from and where we want it to go. I remember Senator Fred Chaney, Minister for Social Security during the International Year of Disabled Persons (IYDP 1981) expressing his concern and disappointment at the predictable gap between idealistic expectations for programs and their eventual outcome.

The reason we are holding this seminar is surely not to debate the concept of helping one another. Our task is to examine the process of introducing into the disability field the latest Australian flavour of the month, ‘advocacy’.

There is already some evidence in Western Australia to suggest we may already be proceeding too fast for our understanding of the issues involved. I believe it is necessary to approach advocacy and other issues through a method of continuous examination of our definitions and the self-interests of the players involved. If we are to achieve our goal of assisting the targeted groups, re-examination is an important continuous role for those of us involved in implementation processes.

Moving away from basic assistance towards more ephemeral

The notion I would like examined is the continuing trend in the human services sector towards designing assistance packages emphasising more and more ephemeral levels of assistance. Is this the way people with disabilities want to progress?

Daniel Bell, in his visionary book of the 1970’s, The Future of Post-Industrial Society, traced the movement of the economy in Western society from the primary production on farms to a secondary industrial and manufacturing base in cities. Mobility and the sophistication of education have now moved us to the tertiary stage of service exchange..

Exponential developments in electronics, miniaturisation, information storage, retrieval and exchange, have collapsed time and geographic boundaries as we have known them. This ‘progress’ towards the abstract has radically altered the nature of work and economies and brings with it genuine human problems of adjustment to any rapid change.

Abraham Maslow’s famous ‘hierarchy of needs’ model draws parallels in the psychological area with Bell’s economic model towards abstracted language. Maslow posited a model of human needs moving up from a broad base of physical and material needs (food, shelter, clothing) through a range of stages towards a state of self-actualisation. The importance of both Bell’s and Maslow’s messages is that they emphasise the primary need to build on the broad base of people’s real needs for physical and emotional sustenance and attention when attempting to develop higher, more elite levels.

Dangers in trend towards an information-based economy

There are several dangers of these more ephemeral trends for the disability area. One is that unless disabled people can be retrained and educated to be useful to a skilled, information-based economy, their chances of employment are lower than ever.

While the individual people with disabilities are having trouble obtaining and keeping jobs, the sector of employment aimed at servicing their physical and social needs seems ever-growing. This service sector is skilled at defining new clients for itself and then providing service.

Naturally enough the interests of trained, information-oriented people lie in the more conceptually abstract areas. In the field one often hears this problem voiced in exasperation as, “too many chiefs and not enough Indians!” While these more abstract directions are not intrinsically bad, they become more significant to people with disabilities when there is a limit to the economic cake.

Balancing budgets and choices for disability services and market forces

In dealing with the economic cake there are two political judgements which need to be made. First is the size of the budget slice the community is willing to make to the disability area. The second political decision involves the division of that portion into the various disability priorities. Currently we have no satisfactory mechanisms to apportion these program funds in a rational, accountable way. This current and historical laissez faire approach leaves the overall fate of disabled people to market forces and system entropy.

I believe we need to keep in check the self-interest of the very large industry building itself around disability. In modern society it is necessary to have paid professional people. Our considerable task as I see it is to keep those interests in balance with the interests of the end users.

After all, advocacy is a band-aid process, which acknowledges the failure of our social systems to empower people.

Disability Services Act 1986 – Definition of ‘advocacy’

The Commonwealth Government has done some interesting work in clarifying their definitional parameters of advocacy. Section 7 of ‘The Disability Services Act 1986 ‘ describes advocacy as:
” (a) self-advocacy services, namely, services to assist persons with disabilities to develop or maintain the personal skills and self-confidence necessary to enable them to represent their own interests in the community;
(b) citizen-advocacy services, namely, services to facilitate persons in the community to assist (i) persons with disabilities; or (ii) the families of, and other persons who provide care for or assistance to, persons with disabilities to represent their interests in the community’ or
(c) group-advocacy services, namely, services to facilitate community organisations to represent the interests of groups of persons with disabilities.”

Section 8 (1) of the Disability Services Act 1986 describes the target group as persons with a disability that:
“(a) is attributable to an intellectual, psychiatric, sensory or physical impairment or a combination of such impairments;
(b) is permanent or likely to be permanent; and
(c) results in (i) a substantially reduced capacity of the person for communication, learning or mobility; and (ii) the need for ongoing support services.”

Questioning targeted objectives and strategies of advocacy

It is evident under these Commonwealth Government definitions that the breadth of people who could be eligible for these services spans a large section of our population. I believe it would be beneficial for people with disabilities to look closely at who is being targeted and consider that in relation to what is already in existence.

The problem I also have with these Commonwealth legislative definitions is the lack of clarity and clear-cut meaning to words such as ‘interests’, ‘assistance’, ‘self-confidence’ and ‘capacity’. What is not evident from these definitions is a whole range of possible stretching of these guidelines. For instance:

  1. Is political lobbying eligible for funding?
  2. Are resource centres eligible for funding?
  3. Could lawyers representing disabled people claim fees?
  4. Is any organisation providing a service an advocate?
  5. Do these definitions make clear the various players and
    their roles?

The philosophy and language in the stated objectives of the Commonwealth Government are an excellent starting point for those of us who work in the field. The strategies that it sometimes uses however are open to criticism. It tends to impose programs without regard to existing State processes. The ton of paper that gets handed out at meetings, then offering to two minutes to read it and make informed comment seems to be a depressingly familiar scenario of many Commonwealth meetings.

Setting priorities for equitable funding of disability needs

In summary, I believe we need to develop an overview mechanism for funding bodies which has the power to form consensus priorities for the style of service we want to see in the 1990’s. Key questions for those people who sit in judgement over the scales of balance will be:

  1. How do we take account of and apportion equitably the funding needs as seen by people with disabilities for accommodation, hands-on help, transport, medical, education, information, and now, advocacy?
  2. How is the cake to be consumed and who eats it? How do we implement the requirements of those priorities at the local level with existing systems and players?

We need to develop in Australia a structure which will be responsible and held accountable for setting priorities for effective and equitable assistance that provide fundamental support and assistance for people in daily living. Commonwealth funding needs more balanced input from consumers on disability assistance, from properly informed advisory bodies and from workers in the field so it can choose the best step forward to benefit disabled Australians. As the sign on the desk of the famous disabled President of the United States, Franklin D. Roosevelt, said, “The buck stops here.”