Disability empires believe they are doing society
This is a propositional paper by Miriam Taylor QCIDD, School of Medicine, University of Queensland. And, Fran Vicary, Queenslanders with Disability Network Inc.
a favour by helping poor unfortunates.
Disability empires arise in large centrally controlled offices
which are isolated from the people with disability
Just as in any other industry on the planet, in the field of disability work, there are empires. There are empires within empires, says Max Weber, and they are driven by over-specialisation, rigidity, group thinking, disregard for dissenting opinions and a lack of common sense. Those who are the most vulnerable, the users of the services, are pawns in a larger game.
Empires are classically defined as:
- Centrally controlled
- Overarching belief
- Absolute authority of leader/s
- Involuntary participation
- Defined territory
Disability empires arise in large centrally controlled offices which are isolated from the people with disability. Despite the fact that it is an industry with paid workers, the disability empire has an overarching belief that it’s work is somehow altruistic, that it is doing society a favour by helping poor unfortunates. This ‘work’ is achieved through managers who have absolute authority over how services are delivered to people. The services users as people with disabilities are currently called are not necessarily participating willingly in this industry, they are forced to use those services because society and government has legitimised the empire. There are turf wars over territory and clear demarcations on who becomes a service user to a particular service based on empired defined rules of eligibility. Effectively, the service users become the other, becomes other-ed to fit the empire definitions, becomes the other to be administered (Richards, 2008). Disability empires use this other to elicit pity and charity dollars from the community at large which in a reciprocal way, believes that those large disability empires are doing the right thing for those others who should be placed apart from the general society.
Shaddock (Shaddock, 2003) takes this notion of empire further and considers that disability empires react rather than construct and build links; they silence critics through defunding and through funding they force competition for funds rather than collaborative service delivery. The money usually goes to the best dressed model, the one which is most palatable to the political scene of the day. Audits based on manufacturing industry codes generally disregard the people who use the services and an intense guarded fear of the media limits independent scrutiny. Populist decisions such as placing people with challenging behaviour in protective custody are soundly based in reactions to public opinion. Pathways for support, even if you speak English fluently, are difficult to negotiate and generate exhaustion in the seeker.
The deficit model of disability is alive and well today. The disability industry owes its origins and maintenance to how we as a society construct disability on deficits.
The present disability benefits system is highly discriminatory and effectively discourages those who struggle for personal autonomy and economic independence. ...Disabled claimants have to emphasise their limitations instead of their strengths in order to claim benefits.(Barnes, 1994).
The deficit model means that people with disabilities are not offered a role in mainstream services, let alone mainstream employment. As a society, we underestimate the potential of people with disabilities as producers, as consumers, as contributors; i.e. their potential market capacity is enormous. Regardless of their role within the ‘conventional’ labour market, people with accredited impairments and labelled ‘disabled’ are both producers and consumers of a vast array of services upon which many so called ‘able bodied’ people depend.(Barnes, 1994).
The majority of readers of this article will be working and may in fact be employed within the disability empires of today. Yet, despite the fact that we owe our own livelihoods to people with disability, we as a society deny people with disability the producer role.
Disability, including identification, assessment, management, provision, support, and services, provides an employment for large numbers of professionals and skilled workers: the Disability Industry.(Pavey, 2006)
The shift from institutional to community based services for people in the 1960s and 70s precipitated an unprecedented growth in the disability industry and the number of professional working within it. (Barnes, C. 1994. Institutional discrimination, disabled people and interprofessional care, Journal of Interprofessional care, 8:2, 203-212).
The creation of the person with disability as other is an economic process by which the disability industry is maintained. Simultaneously, teams which assess and manage theperson with disability, the other, and then plan their lives for them continue to deny them the lives that we live. The disability empire continues to send people with disability to poorly paid jobs, to endless rehabilitation programs, to segregated schooling and employment, and to live in homes with people they did not choose to share their lives with.
The ‘professionalisation’ of the disability industry has led to an explosion of the industry. For example, care packages have to be dealt with by case managers.
Professional’s salaries continue to soak up the lion’s share of allocated disability industry funds in both the private and public sectors. (Barnes, C. 1994. Institutional discrimination, disabled people and interprofessional care, Journal of Interprofessional care, 8:2, 203-212).
Annual income for a single person on a disability support pension (Aug 2010) $17,118.
Annual income for a manager Level 7 QCSACA $59,114 (IYDP National Committee of Non-Government Organisations).
Annual income for a manager Level AO7 QPSA $90,245
Person centred has become a truly dirty word. The money which goes to building offices with terrific views and incredible infrastructure is the money which is not going to the person. Funding is not directed at the person to purchase services and if it were, overall costs would significantly shift downwards and the non-disability industries would benefit. Person-centred, person-directed funding thus would drive genuine inclusion.
Collectively made decisions about service delivery are more difficult to challenge than those made by individuals working alone. (Barnes, C. 1994. Institutional discrimination, disabled people and interprofessional care, Journal of Interprofessional care, 8:2, 203-212)
Another aspect of empire is that decisions are made in complex ways and by groups of people and even in a transparent society, it would take an investigative journalist some time to trace back the decision to its source.
In terms of costings, the bricks and mortar of offices versus the bricks and mortar of people’s housing is significantly skewed. People with disability using disability industry housing are charged higher rates than the open market value of public housing.
You may think that these are crude parallels to draw and indeed, they are. We did say at the beginning that this was a propositional paper, and that we were asking the reader to challenge their own views on the disability empire.
Whilst there have been studies around the persistent poverty that people with disabilities live in, there have been no major studies which take a more sophisticated look at these issues we are raising now. At the end of each day, what services and support have people with disabilities in our community actually received the cost of producing those services? People who are on an income purchase other services for half the cost of those in institutionalised settings. It costs one third more in group homes to get ironing done than for someone in the general community. There is overarching belief that everything supplied to people with disability has to be done using a disability support model where people are forced into using those services.
Being a disability client
• Lack of privacy
• Lack of control
• Lack of education
• Limited economic independence
• Undergo constant processes of testing which focus on deficits
• Enduring a gaze of being “other”
• Become a “captive of care”
• Having to be “grateful” and compliant
• Risk of abuse
• Having no means of communicating!
• Not receiving any service which is useful to you
The definition of work should include those activities which people with disabilities undertake in the management of daily living, including the creation of employment opportunities for others. [Perhaps] it is time to think differently about funding, resources and new forms of support including entrepreneurship which can aid financial empowerment. (Pavey, B. 2006, Human capital, social capital, entrepreneurship and disability: an examination of some current educational trends in the UK, Disability & Society, 21:3,217-229)
The exciting thing about [the study of disability] is that it is both an academic field of enquiry and an area of political activity, involving the classrooms, the workplace, the courts, the legislature, the media and so on.... (David, L J, ed. 1997, The Disability Studies Reader, London: Routledge)
A narrowly targeted social policy designed for the poor prevails: it is one where the poor are subject to state coercion. The end that social policy should serve is the development and sustaining of an individual who has the set of capabilities that he or she requires to be free in the sense of self-determining. Yeatman, A. 2004, Social policy, freedom and individuality, Australian Journal of Public Administration, 63:4, 80-89).
At the end of the day, people with disabilities provide many people with jobs. Let’s remember the actual meaning of service, i.e. to serve.
References Barnes, C. (1994). Institutional discrimination, disabled people and interprofessional care. Journal of Interprofessional Care, 8(2), 203-212.
IYDP National Committee of Non-Government Organisations. (1982). Final report / International Year of Disabled Persons National Committee of Non-Government Organisations (pp. 1-38). Canberra: IYDP National Committee of Non-Government Organisations.
Pavey, B. (2006). Human capital, social capital, entrepreneurship and disability: an examination of some current educational trends in the UK. Disability & Society, 21(3), 217-229.
Richards, R. (2008). Writing the othered self: Autoethnography and the problem of objectification in writing about illness and disability. Qualitative Health Research, 18(12), 1717-1728.
Shaddock, A. J. (2003). People with disabilities in the era of the “triple bottom line”. Journal of Intellectual and Developmental Disability 28(1), 90-93.
LISA Comment: The biggest empire is Government!
“Who corrects the actions of government departments, if not the government?” It is the role of government to fund the provision of social services to the public..... Government uses public money, the result of taxes and charges, to do this. It must, therefore, be the role of government to regulate the provision of social services.
The organisation funded by the State Government of Victoria to provide, and arrange the provision of social services across Victoria is the Department of Human Services (“DHS”), Victoria.
The regulation of this organisation, this government department, must therefore be the responsibility of the State Government of Victoria. One of the social service roles of DHS Victoria, is to arrange the provision of support services for people with a disability, through its ‘Disability Services’.
As part of the state government’s responsibility to regulate DHS Victoria, it established, under the Disability Act 2006, the Office of the Disability Services Commissioner.
The Disability Services Commissioner is, (a) not empowered to direct service providers (including DHS Victoria) and, (b) not empowered to consider systemic complaints (complaints about that which causes individual complaints to arise) – system failures. The Commissioner is empowered only to conciliate individual complaints.
This leaves the only body with the right to directly investigate the systemic aspect of consumer complaints against DHS Victoria, and to subsequently direct DHS Victoria to correct its system failures, is the State Government of Victoria.
It is therefore the responsibility of the Minister for Community Services to direct DHS Victoria to correct its system failures. If necessary, through the Minister engaging and empowering external expertise to ensure this occurs.
We suspect this failure of governments to act in the interest of consumers and tax payers, is very wide spread. We certainly saw it with the, ‘Victoria Police Service Areas’. Their management failed to ensure public service staff provided sufficient equipment to ensure police vehicles were on the road, and had to therefore outsource the work – government paid twice for the work to keep police vehicles on the road.
Whereas, where vulnerable people are provided with insufficient or inappropriate care, the work is not outsourced, so these vulnerable people suffer directly...
Community Visitors, Victoria, state in their current annual report that many of the residents of a DHS isolated residential facility, ‘Plenty Residential Services’, are having to personally purchase the services of agency staff to take them into the community occasionally.
Extra 1: Little more than Minder Care, in Practice