ISAA 2018 ANNUAL LECTURE ­ National Conference ­ ISAA

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ISAA 2018 ANNUAL LECTURE


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ISAA 2018 ANNUAL LECTURE

 

Human Rights and Disability: The Promise and the Reality

 

Trevor R Parmenter AM

Professor Emeritus, Sydney Medical School, University of Sydney

 

No man (sic) is an island, entire of itself;

Every man (sic) is a piece of the continent,

A part of the main.

John Donne, Meditation XV11

Definitions of disability

Many books and theses have been written on the question: “What is a disability?”

Historically and presently to a lay audience it signifies a physical or mental impairment. One has only to look at the message that the symbol for a “disability toilet” signifies. This is the basis for what is termed in the literature as the “Medical Model of Disability”. In 1980 the World Health Organisation (WHO)[i]published the International Classification of Impairments, Disabilities and Handicaps (ICIDH)which introduced the concept that it was the environment which produced handicap. Further conceptual developments led to the WHO[ii]publishing the International Classification of Functioning, Disability and Health (ICF)in 2001. The ICF embodied the concept of a biopsychosocial model of disability which emphasised limitations to a person’s activities and barriers to their participation in the community.  

However, there were parallel movements, largely led by people with physical impairments, which strenuously challenged the medical model, urging instead for a social model which at its extreme asserted that disability was solely a result of environmental issues. The ICF was an attempt to bridge the opposing views, but it is still under challenge from parts of the disability community. A recent book, Disability and Human Rights: Global Perspectives[iii]lists up to eleven disability models, including a Rights Model, used in various countries.  

Australian Prevalence

The Australian Bureau of Statistics (ABS) conducts a sample Survey of Disability, Ageing and Carers every three years (SDAC). The 2015 Survey[iv]revealed:

§   Almost one in five Australians reported living with disability (18.3% or 4.3 million people).

§   The majority (78.5%) of people with disability reported a physical condition, such as back problems, as their main long–term health condition. The other 21.5% reported mental and behavioural disorders.

§   More than half of those with disability aged 15 to 64 years participated in the labour force (53.4%), which is considerably fewer than those without disability (83.2%). These results are consistent with those in the 2012 SDAC.

These data significantly over-estimate the number of people who will be eligible for support packages under the NDIS. The 2016 Census of Population and Housing[v]which showed that 1,202,900 people or 5.1% of the population had a need for assistance with core activities, does not reflect the estimated NDIS cap of 475,000 people. The NDIS acknowledges that many people with disabilities will not receive a disability support package, but other mechanisms of support are promised, but not yet made clear. Those over 65 years will not be supported by the NDIS. But that is the focus of another paper.The 

Human Rights Movements

In the western world policies based on the rights of individuals may be traced to the French initiative in 1789 in its proclamation of the Declaration of theRights of Man and the Citizen[vi].It was not until 1948 that the United Nations promulgated the Universal Declaration of Human Rights, the 70thanniversary of which this conference is celebrating. One of the first references to disability rights in the context of intellectual disabilities was by Dr Harvey Stevens in his presidential address to the First Congress of the International Association for the Scientific Study of Mental Deficiency, held in Montpellier, France in 1964. Stevens stressed the prime importance of the inalienable right of the individual who is mentally deficient to the same dignity as fellow human beings[vii].

In 1971, the General Assembly of the United Nations issued the Declaration of General and Specific Rights of the Mentally Retarded.[viii]This provided a moral justification for legislation that was enacted by governments of Western countries promising opportunities for people with intellectual disabilities to be a part of normal society.  

The Declaration of the Rights of Disabled Peoplefollowed in 1975, and the year 1981 was proclaimed the International Year of Disabled Persons (IYDP) by the United Nations. It called for a plan of action with an emphasis on equalization of opportunities, rehabilitation and prevention of disabilities.[ix]The decade 1983-1992 was designated the “Decade of Disabled Persons”.[x]In 1993 the UN adopted the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities[xi].

The most recent and possibly the most significant of all UN Resolutions regarding the Rights of people with disabilities is the Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the General Assembly on 13 December,2006[xii]. Australia was one of the first countries to sign, ratify and adopt the Optional Protocols which impose certain obligations on governments. It is within the context of these obligations that this paper will critically analyse the aims and processes of the National Disability Insurance Scheme (NDIS)[xiii]that is being presently rolled out across Australia. Central to the analysis will be an examination of the apparent paradox between the philosophies of self-determination, empowerment and citizenship espoused by disability advocates and the essential focus of the NDIS on consumer choice and market-driven consumer systems. The conclusion is that despite there being some valuable aspects of the NDIS, under its present policies and structures, the basic human rights of people with disabilities in Australia will not be adequately achieved, especially in the broader context of well-being and quality of life.  

The Articles of the CRPD

 UN Convention on the Rights of Persons with Disabilities (CRPD) contains 50 Articles[xiv], of which the following will be singled out as pertinent to this discussion.

Article 1: Purpose

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity

Article 10 – Right to life

 

States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

Article 19 – Living independently and being included in the community

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

Article 24 – Education

States Parties recognize the right of persons with disabilities to education.

 In realizing this right, States Parties shall ensure that:

a) Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability;

b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;

c) Reasonable accommodation of the individual’s requirements is provided;

d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education;

e) Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.

Article 25 – Health

  States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

c) Provide these health services as close as possible to people’s own communities, including in rural areas.

In the eyes of major international nongovernment advocacy organisations, the realisation of the rights of people with disabilities is the cardinal objective to be achieved. One cannot deny the rights of disabled people to have equal opportunities to access education, employment, the physical environment, information and communication. There is also no denying the fact that special legislation enacted in most Western countries has underpinned the provision of a wide range of support that has enable the fuller participation of disabled people into regular community life. However, it is suggested that rights legislation is a necessary, but insufficient condition for people with disabilities enjoying the full acceptance of the general community as human beings with the same rights and quality of life as everyone else.

Principles underpinning the NDIS

On 31July, 2011, the Productivity Commission released its Inquiry Report on Disability Care and Support which culminated on the bi-partisan adoption of the National Disability Insurance Scheme Act (NDIS) by the Australian Parliament on 28 March 2013.[xv]

In its introduction to the Report the Commissioners stated that: The current disability support system is underfunded, unfair, fragmented, and inefficient. It gives people with a disability little choice, no certainty of access to appropriate supports and little scope to participate in the community. People with disabilities, their carers, service providers, workers in the industry and governments all want change.

The principles outlined in the Act include:

(1)  People with disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development.

 (2)  People with disability should be supported to participate in and contribute to social and economic life to the extent of their ability.

(3)  People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime

 (4)  People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports.

(8)  People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.

The principle of achieving ‘choice and control’ supports the position that the NDIS is premised on a social model of disability.However, the National Disability Insurance Agency (NDIA) 2016/17 Report pointed out that,

The NDIS is a social insurance scheme. Building the economic, education and social participation of Australians with disability is the core focus of the NDIS. This means the Scheme is aimed at delivery of better outcomes for people with disability through an insurance approach that invests to produce a long-term social and economic dividend for the whole country.

It marks a deliberate departure from a welfare-based approach, where the costs of providing disability support were viewed through a short to medium-term lens. The Scheme is intended to improve outcomes for participants and produce long-term fiscal and economic gains for Australia.

The Scheme takes a lifetime approach to supporting people with disability, informed by actuarial analysis. This means expenditure is considered over the life of an individual, and Scheme sustainability is measured by calculating the total future cost of supports for participants.[xvi]

 Mr Robert De Luca, Chief Executive Officer was appointed by the present Government as Chief Executive Officer, following the restructuring of the NDIA, to replace members with an experience in disabilities, with members with a strong experience in the corporate financial world. Mr De Luca’s 20-year career included senior executive positions with Bankwest, the Commonwealth Bank of Australia and ASB Bank[xvii]. Soon after his appointment Mr De Luca recruited former colleagues with banking experience to his senior staff.[xviii]

The Independent Advisory Council (IAC) of the NDIS in its 2014-15 Report took a different tack. Professor Rhonda Galbally, the Principal Member, pointed out that,

The IAC embodies the principle of co-design through its membership and strong connections with the community. The IAC strives to ensure the realisation of the vision and values of the NDIS Act – for the NDIS to contribute to people with disabilities becoming more independent, more included in mainstream social and economic participation and more self-directing.

In its first two years, the IAC has focused on thefundamental design questions in the NDIS, such as what is an ordinary life and how can reasonable and necessary support assist people to move toward an ordinary life, which is a mainstream life in the Australian community. 

Conceiving the concept of an “ordinary” life across lifespan cohorts from early childhood to older age has been a major contribution by the IAC. It has been the basis of advice to the NDIA Board on practical definition and substance for key concepts such as choice and control, reasonable and necessary supports, capacity building and personal safeguards and risk[xix].

The IAC has also recommended that additional efforts need to be directed toward building community capacity[xx]which will be an essential aspect of the eventual success of the NDIS, but currently lacks a budget allocation sufficient to make a significant impact. The appointment of Local Area Coordinators to assist NDIS recipients navigate their choices and to link them into generic support services, where possible, is fraught with difficulties, one of which is the low salary scale and skill set required for these crucial positions.

Emerging problems: Old wine in new bottles?

Following are just a number of instances which call into question whether the NDIS, under its management by the National Disability Insurance Agency (NDIA), fully complies with the spirit of the CRPD.

· In April 2018, the NDIA announced that Serco would be operating contact centres in Melbourne and regional Victoria for two years. This prompted concern from peak advocacy body People with Disability Australia and others about Serco's lack of experience with disabilities despite being at the first point of contact with clients[xxi].   The entry of for-profit organisations into this market will possibly lead to similar problems being experienced in aged care facilities, such as a lower skilled and lower paid workforce.

· Similar price pressures are currently putting increased pressures on existing not-for-profit agencies, resulting in many smaller ones having to amalgamate or go out of business. Many of these had their origins in family initiatives in the middle of the last century.[xxii]

· The Financial Review noted on 11 May 2018  that the NDIS was "becoming an economic factor in its own right", particularly in regional areas[xxiii]

· A report by Flinders University into the running of the NDIS found that half of all participants in the NDIS have either had their support reduced or have not experienced a change in their support levels since the NDIS has been introduced[xxiv]

· In 2018 it was reported that the NDIA had a budget of $10 million for legal services that are employed to attempt to prevent people appealing for more money under the scheme or to prevent them from accessing the scheme. As of May, 2018, The Australian newspaper reported that 260 cases had been resolved by the courts, with the NDIA losing 40% of them[xxv]

· Australia has no laws prohibiting the forced sterilisation of women with disabilities, or childrenwhich is inconsistent with Article 19  of the CRPD. The Committee on the Rights of Persons with Disabilities in its response to Australia’s initial Report to the Committee in 2013 expressed deep concern that the Senate inquiry into the involuntary or coerced sterilisation of persons with disabilities, released in 2013, puts forward recommendations that would allow this practice to continue.[xxvi]I suggest we watch this space once euthanasia is legislated for in all States and Territories.

·  A 2009 OECD study found that Australians ranked lowest in terms of quality of life for disabled people.They experience very low levels of employment, income, and social exclusion together with high levels of mental health and complex physical health problems. They also experience high levels of physical and sexual abuse[xxvii]. These factors place a significant challenge for the NDIS to act decisively to turn these results around, but many of these matters are outside the remit of the NDIS.

  • The track record regarding NDIS support for Indigenous Australians with disabilities is not promising. A recent report by Scott Avery, PhD student from the University of Technology Sydneyshowed the NDIS is not accommodating the unique needs of Aboriginal and Torres Strait Islander people with disability. People in one Aboriginal community said while the NDIS was providing support packages – in some cases at around A$50,000 per person per year – these were not translating into actual expenditure as there weren’t any disability services in the community that NDIS participants could purchase[xxviii]. One of my students found that the delivery of health services to Indigenous people with disabilities in the Northern Territory failed the requirements of Article 25 of the CRPD[xxix].
  • As noted earlier, the projected roll out of the NDIS individualised packages across the nation will only target people who meet the eligibility criteria. There is a large population of people with a disability who will miss out. The Act does acknowledge this broader need, but there are few signs to date that policies are in place to support these people.[xxx]

I hasten to point out that there are also many positive stories emerging where people with disabilities have found that their individual support packages are providing emancipatory effects on their quality of life. However, the take up of people actually managing their own budgets is very low, a finding reflected in other countries with individual funding policies. For many, despite the advent of individual funding, it would appear the actual processes of the delivery of support remain very similar to the scheme it has replaced.

My first major concern with the NDIS in the context of the CRPD is the lack of an effective mechanism to provide inter-sectorial collaboration between the apparent silos of State/Territory and National government Departments which provide generic services to people with disabilities. Some State Governments are in the process of entirely abdicating their responsibility for their citizens with disabilities completely. 

My second concern is more philosophical and moral, relating to the acceptance by the community generally of a mutual responsibility for its citizens with disabilities. The NDIS is touted as a major breakthrough, because it is an insurance-based scheme which brings the certainty of an entitlement policy. As noted earlier, this is claimed to be a significant paradigm shift from a welfare-based approach. Insurance policies may bring a certainty of funding, but they do not ensure people will care.

The dominance of market ideology 

Neoliberal economic policies of the major industrialized nations (e.g. the G 20), accelerating during the Regan and Thatcher years, have had an impact upon the provision of services for disadvantaged groups. A classic demonstration in the Australian context is the publication of two recent reports by the National Productivity Commission on Ageing and Carers (Caring for older Australians[xxxi]) and Disability (Disability care and support[xxxii]). The Commission is the Australian Government's independent research and advisory body on a range of economic, social and environmental issues, but with a heavy emphasis upon economic factors. As I indicated earlier, it appears that all social initiatives must be judged primarily upon their economic impact. Economic rationalist policies are predicated on the principle of “utility maximization”, with individuals using their resources to achieve the highest level of satisfaction possible. The essential element is that people must be free to choose how they use their resources - in essence, economic reform means reducing interference by governments (e.g. The US Tea Party phenomenon and our local heroine, Pauline Hanson)). In this process, strong countries can exploit the weak, while wealthy companies increase their wealth by shopping around the world for the cheapest labour. It is somewhat ironic that the calls by people with disabilities for self-determination, choice, independence and empowerment are seductively similar to the neo-liberal individualistic mantras. But sadly, individualism runs counter to the notion of a community embracing its members collectively. 

Is the Rights Approach sufficient?

One cannot deny the rights of disabled people to have equal opportunities to access education, employment, the physical environment, information and communication. There is also no denying the fact that special legislation enacted in most Western countries has underpinned the provision of a wide range of support that has enabled the fuller participation of disabled people into regular community life. However, it is suggested that rights legislation is a necessary, but insufficient condition for people with disabilities enjoying the full acceptance of by the general community.

Reinders has argued that the moral language of rights in neither sufficient nor necessary to ground moral responsibility for disabled people. He suggested that, to claim equal rights for the disabled makes sense only on the basis of commitments that draw on other moral sources than the sources that are intrinsic to the morality of rights [xxxiii]. For instance, in the context particularly of people with intellectual disabilities and others who require significant support systems, Reinders’ essential argument is that the contemporary rights discourse is deficient in accounting for the moral features of caring processes- practices that are committed to the well-being of people who are dependent on the support of others. His concluding comments are quite apposite:

Without people who have sufficient moral character to care, rights can do little to sustain the (mentally) disabled and their families. People can be forced to comply, but they cannot be forced to care [xxxiv].

My late friend, Bengt Nirje[xxxv], the Swede known as the “Father of the Normalisation Principle”, which called for people with disabilities to have the same patterns of life as other citizens noted:

Laws and legislative work cannot provide total answers to problem solving and proper actions with regards to human rights. These can only come into existence in the full cultural and human context. Such problems are not only practical, but also ethical[xxxvi].

As a universal approach, the rights movement runs into difficulties in cultures that do not have a social system that has a strong commitment to individualism, a phenomenon that is largely Western in origin. There are cultures that would emphasise the notion of a person’s obligation to the community or tribe more strongly than the reverse. It may be more profitable to envisage a society where the principle of mutual obligation transcends the principle of individual rights.

In his book, The future of the disabled in liberal society: An ethical analysis, Reinders[xxxvii]suggested an approach beyond what he termed “the narrow conception of morality”. In essence, Reinders argued that each of us has a moral responsibility for dependent people that has a different basis than a conception of the person in the liberal sense. For instance, he suggested that:

dependent others are accepted because their lives are placed in our hands. We can reject their existence and consider their lives are not worth living. We can leave them to be taken care of by their families and grant them the right to be sovereign of their own lives. But we can also accept responsibility for the fact they are part of the web of social relationships that constitute our moral world [xxxviii].

I find Reinders’ approach to the moral status of people with intellectual disabilities in particular compelling, for it brings us to an identity issue - not so much the identity of the person with the disability, but to our own moral identity in relationship to how we react and respond to them - giving, but not necessarily expecting anything in return. Reinders’ position is also very pertinent to the nature of family quality of life in the context of having a child with a disability.

Clapton[xxxix]suggested that the disability rights movement has shifted the socio-political identities of people with disabilities from being seen as … objects of the medical discourse, to subjects of the political discourse. … Within the liberal state, there is movement of liberation from welfare recipients to a citizen; and hence is also indicative of the shift from exclusion to belonging [xl]. In this context, Clapton indicated that inclusion, as a condition for citizenship in a society, is a moral imperative of the disability rights movement[xli]

But Cumella[xlii]has noted that the concept of citizenship is fraught with difficulties especially for people with intellectual disability, particularly the question of whether those deemed to have impaired rationality can be considered citizens. For some, they are not even seen as being human. He suggested that there was a wide belief in the community that such a stigmatized group was not worthy of determining their own way of life. As a result, public policies for this population … have been shaped by the dominant political ideologies of the day[xliii].

The Rights discourse has been to a large extent dominated by the voices of people with a physical or sensory disability and it is a moot point whether this approach has contributed significantly to the emancipation of people with intellectual disabilities.

The materialization mantra is sapping the lifeblood of those elements which build social cohesion and a sense of mutual obligation towards one’s fellow citizens, especially those who are marginalized and relatively powerless. Amartya Sen, the Nobel Prize winner in Economics, suggested that the powers of the market economy need to be augmented by the provision of basic social opportunities in a context of social equity and justice[xliv]

Brendan Gleeson[xlv], director of an urban research program, observed that while care goes to the heart of the human experience, 

The act of care is now an exchange framed around individual consumption power, not social obligation. The power and the autonomy of the cared-for consumer are thus strictly circumscribed by imperatives of exchange: money and realization of profit. In short, deinstitutionalization rendered the socially dependent subjects without agency. This may be emblematic of the wider re-subjectification of citizens as consumers under neoliberalism[xlvi]

In countries where neo-liberal policies are struggling under the pressure of reduced welfare budgets, resulting in fewer and less experienced support staff to service a growing number of people in need, there will be an urgent need to consider a re-conceptualization of what care means. The picture is no less bleak in developing countries which are generally copying the failures of the western economic system. 

This is not to deny that scarce resources must be applied efficiently to achieve quality outcomes for the people in need.

The way forward: Building an Ethical Community

 In 1992 John Ralston Saul, in his book Voltaire’s Bastards, argued that Western civilization is without belief for the first time since the decline of the Roman Empire[xlvii]. More recently, Jeffrey Sachs, in The price of civilization: Economics and ethics after the fall, echoed the same sentiment. He suggested that there is a moral crisis, a loss of the ethos of social responsibility, and a decline in civic virtue; exemplified by America’s hyper-commercialization which is also penetrating other societies, especially the emerging economies. Sachs argued that we need to reclaim our mental balance, because: 

The logic of profit maximization, combined with unprecedented breakthroughs in information and communication technology, has led to an economy of distraction … the end result is a society of consumer addictions, personal anxieties, growing loneliness in the midst of social networks, and financial distress (pp.158-58)[xlviii]

Sachs’ antidote is that we need to create “a mindful society” and re-conceive the idea of a good society through multiple acts of good citizenship, …remembering that compassion is the glue that holds society together[xlix]. The moral standing of people with disabilities, however, remains a challenge in a society which strives for perfectionism in body and mind. 

Also writing in 1992, Paul Dokecki[l]was sanguine that by the year 2000 we would see the development of an ethical community that would be a counter to what Bellah et al[li]called “ontological individualism”. Dokecki argued that … we should work toward an ethical conception of community, which establishes that all persons are fundamentally equal as human beings[lii]. How then might we recapture Dokecki’s enthusiasm; despite the continuing materialism, hedonism, privatization, and individualism which is still clearly apparent in our society in the second decade of the millennium? 

H Rutherford Turnbull in his keynote address to the annual meeting of the American Association on Mental Retardation in 1998 asserted that each member of a community must recognize that all are vulnerable in some aspects of their lives. As a first step, therefore, the ethical community must recognize what Turnbull eloquently suggested: “a mutuality of need and reciprocity of vulnerability”[liii]. The increasing emphasis on supporting families and focusing policy research on the family’s role in supporting their family member with a disability is a promising sign that the development of the conception of an ethical community is not a pipe dream never to be achievable. 

One critical way in which resources must be directed is towards building community capacity and the development of social capital. Whilst disability policies in the western world are moving strongly toward supporting person-centred planning, individual choice and the allocation of support resources to individuals, rather than to service organizations; there is a danger that generic community resources and natural supports will not be sufficient for personal plans to be realized. 

Despite the rhetoric, I sadly believe most current western, and to some extent, developing country government policies remain captured in the belief that market forces result in a more equitable society. As indicated, this is a contestable position and leaves the most vulnerable, including those with disabilities, dangerously exposed. Hopefully, we shall see a return to a position where governments provide much needed leadership to inspire their communities to a higher plane than self-indulgent materialism. 

The quality of life and social inclusion of people with disabilities will, to a large measure, depend upon external socio-political-economic forces. Their level of acceptance as fellow human beings and citizens will also be influenced by the humanity and compassion of the general community. Those advocating for this population need to engage with the wider community in its journey towards quality of life and happiness. Thus far, we have been too focused on the needs of people with disabilities in isolation from those of the wider community. In other words, we have not been sufficiently strategic in our thinking, our policies or our actions.


[i]World Health Organisation (WHO) (1980). International Classification of Impairments, Disabilities, and Handicaps (ICDH). Geneva: Author.

[ii]World Health Organisation (WHO) (2001). International Classification of Functioning, Disability, and Health (ICF). Geneva: Author.

[iii]Iriaete, E. D., McConkey, R., & Gilligan, R. (Eds.) (2016). Disability and Human Rights Global Perspectives. London: Palgrave.

[iv]ABS Survey of Disability, Ageing and Carers (SDAC) (2015) https://meteor.aihw.gov.au/content/index.phtml/itemId/658849)(Accessed 9 October 2018).

[v]2071.0 - Census of Population and Housing: Reflecting Australia - Stories from the Census, 2016 http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2071.0~2016~Main%20Features~Core%20Activity%20Need%20for%20Assistance~27(Accessed 9 October 2018).

[vi]https://www.bl.uk/collection-items/the-declaration-of-the-rights-of-man-and-of-the-citizen(Accessed 9 October 2018).

[vii]Stevens, H. A. (1964). Overview, In H. A. Stevens & R. Heber (Eds.) Mental Retardation: A Review of Research,pp. 1-15, Chicago: University of Chicago Press.

[viii]https://www.ohchr.org/EN/ProfessionalInterest/Pages/RightsOfMentallyRetardedPersons.aspx(Accessed 9 October 2018).

[ix]https://www.un.org/development/desa/disabilities/the-international-year-of-disabled-persons-1981.html(Accessed 15 October 2018).

[x]https://www.un.org/development/desa/disabilities/united-nations-decade-of-disabled-persons-1983-1992.html(Accessed 15 October 2018).

[xi]https://www.un.org/development/desa/disabilities/standard-rules-on-the-equalization-of-opportunities-for-persons-with-disabilities.html(Accessed 15 October 2018).

[xii]https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html(Accessed 17 October 2018).

[xiii]https://www.dss.gov.au/disability-and-carers/programmes-services/for-people-with-disability/national-disability-insurance-scheme(Accessed 24 October 2018).

[xiv]https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html(Accessed 24 October 2018).

[xv]https://www.pc.gov.au/inquiries/completed/disability-support/report/disability-support-overview-booklet.pdf(Accessed 24 October 2018).

[xvi]https://www.ndis.gov.au/medias/documents/h28/h9e/8805113626654/1617-AnnualReport-lock.pdf(Accessed 24 October 2018).

[xvii]https://probonoaustralia.com.au/news/2017/07/ndia-gets-new-ceo-construction-begins-head-office/(Accessed 24 October 2018).

[xviii]

https://myaccount.news.com.au/sites/theaustralian/subscribe.html?sourceCode=TAWEB_WRE170_a&mode=premium&dest=https://www.theaustralian.com.au/national-affairs/health/ndis-chief-plunders-b(Accessed 24 October 2018).

[xix]https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=2ahUKEwjb6N2Wg_HfAhUGfSsKHaQkDZYQFjABegQICRAC&url=https%3A%2F%2Fwww.ndis.gov.au%2Fhtml%2Fsites%2Fdefault%2Ffiles%2FIAC-progress-report-2015.docx&usg=AOvVaw2BhXHE4auan0c4u2ivXbZQ(Accessed 26 October 2018).

[xx]https://static1.squarespace.com/static/5898f042a5790ab2e0e2056c/t/5c0481604fa51ae9f3a01cb4/1543799215922/IAC+First+4+Years+Report.pdfhttps://static1.squarespace.com/static/5898f042a5790ab2e0e2056c/t/5c0481604fa51ae9f3a01cb4/1543799215922/IAC+First+4+Years+Report.pdf(Accessed 26 October 2018).

[xxi]https://www.theguardian.com/australia-news/2018/apr/23/outsourcing-ndis-contact-centres-to-serco-an-accident-waiting-to-happen(Accessed 26 October 2018).

[xxii]Van Steel, Fred. CEO Ability Options. Personal communication, 1 May 2018.

[xxiii]https://www.afr.com/opinion/federal-budget-2018-the-economy-shifts-politics-in-the-race-for-election-votes-20180511-h0zyd8(Retrieved26 October 2018).

[xxiv]Morton, Rick. The Australian 1 MAY 2018. (Accessed 26 October 2018).

[xxv]Morton, Rick. The Australian, 17 May 2018. Accessed 26 October 2018).

[xxvi]http://www.powertopersuade.org.au/blog/disability-rights-the-ndis-and-the-need-for-law-reform/27/9/2017(Accessed 26 October 2018).

[xxvii]http://www.oecd.org/els/emp/42699911.pdf( Accessed 26 October 2018). 

[xxviii]https://theconversation.com/indigenous-people-with-disability-have-a-double-disadvantage-and-the-ndis-cant-handle-that-102648(Accessed 26 October 2018).

[xxix]Rivas Velarde, M. (2014). The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of Indigenous peoples with disabilities. Unpublished PhD thesis: University of Sydney.

[xxx]Warr, D, Dickinson, H, Olney, S, et. al. (2017). Choice, Control and the NDIS, Melbourne: University of Melbourne.

[xxxi]https://www.pc.gov.au/inquiries/completed/aged-care/report(Accessed 30 October 2018).

[xxxii]https://www.pc.gov.au/inquiries/completed/disability-support/report(Accessed 30 October 2018).

[xxxiii]Reinders, H. S. (1999). The limits of the rights discourse. Paper presented to the Roundtable of the Special Interest Research Group (SIRG) on Ethics, International Association for the Scientific Study of Intellectual Disabilities, April, Doorn, The Netherlands.

[xxxiv]Ibid, p. 23.

[xxxv]Nirje, B. (1985). The basis and logic of the normalization principle. Australia and New Zealand Journal of Developmental Disabilities, 11,65-68.

[xxxvi]Ibid. p. 65.

 

[xxxvii]Reinders, H. S., (2000). The Future of the Disabled in Liberal Society: An Ethical Analysis.Notre Dame, IN.: University of Notre Dame Press.

[xxxviii]Ibid. p. 176.

[xxxix]Clapton, J. (2011). Inclusion: Illusion or confusion: An applied ethics analysis of individualised funding. In H. S. Reinders (Ed.) Authenticity and Community. Essays in Honor of Herman Meininger.Pp.67-86. Antwerp-Apeldoorn: Garant.

[xl]Ibid. p. 76

[xli]Clapton, J.A.  (2009). A Transformatory Ethic of Inclusion. Rupturing Concepts of Disability and Inclusion.Rotterdam: Sense Publishers.

[xlii]Cumella, S. (2008). New public management and public services for people with an intellectual disability: A review of the implementation of Valuing People in England. Journal of Policy and Practice in intellectual Disabilities, 5. 178-86.

[xliii]. Ibid. p.178

[xliv]Sen, A (1999). Development as Freedom. New York: Alfred A. Knopf.

[xlv]Gleeson, B. (2010). Counterpoints of care: Two moments of struggle, Journal of Intellectual Disability Research, 54, 5-15.

[xlvi]Ibid. p. 14.

[xlvii]Saul, J. R. (1992). Voltaire’s Bastards: The Dictatorship of Reason in the West. London: Penguin.

[xlviii]Sachs, J. (2011). The Price of Civilization. Economics and Ethics After the Fall. London: Bodley Head.

[xlix]Ibid. p. 5.

[l]Dokecki, P. R. (1992). Ethics and mental retardation: Steps towards the ethics of community. pp. 39-51 In L. Rowitz (Ed.) Mental Retardation in the Year 2000. New York: Springer-Verlag.

[li]Bellah, R.  N., Madsen, R., et al (1985). Habits of the Heart: Individualism and Commitment to American Life.New York: Harper Row. 

[lii]Dokecki, p. 40.

[liii]Turnbull, H. R. (1998). Are we gaining ground in the pursuit of life, liberty and happiness? Keynote address to the 122ndannual conference of the American Association on Mental Retardation. June, San Diego.

 

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