Lessons from History

A THEORETICAL FRAMEWORK FOR THE DEVELOPMENT OF DISABILITY

LAW IN AUSTRALIA

NAOMI ANDERSON

This document contains Section 2 only.

© Naomi Anderson

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I RESEARCHING DISABILITY LAW

In December 2012 the Law Commission of Ontario released “A Framework for the Law as It Affects

Persons with Disabilities”1 (Ontario Report). The final report of a four year project, the foreword reflects

the research barriers encountered in this project:

Persons with disabilities have often been marginalized because law and policy has failed to respond

to particular needs. …[T]he project of inclusion remains to be completed. It is important that all law,

policy and practice take account of the particular and diverse needs of persons with disabilities,

whether directed specifically at persons with disabilities or indirectly affecting them. … [This

framework] is meant to provide a systematic way to guide inclusion of the needs and experiences of

persons with disabilities in the review and development of law, policy and practice.2

The research project informing this paper was developed using a similar process of review, analysis and

recommendation conducted as follows:

1. Research the context and history of development of laws that impact the disabled;

2. Determine the points of friction between the current law and the experience of the disabled;

3. Identify a theoretical framework for the development of law that is inclusive and responsive to the

particular needs of the disabled, taking into consideration the gaps in law and practice leading to the

noted frictions;

4. Test the efficacy of this framework in application to the passage of the NDIS;

5. Determine the utility of the framework, and the approach, in analysing legislative change in the area

of disability.

This section summarises the outcomes of the first step in this project.

A A short history

1 Disability and law

At law there are special provisions for disability, but the term “disability” as most law students will

encounter it is not a disability in the common usage sense, but an Amadio3 disability; a vulnerability.

It is this notion of vulnerability that provides a legal concept of accommodation, but for the disabled4 too

often results in exclusion or invisibility. Vulnerability in certain contexts requires special protection,5 and

1 Law Commission of Ontario, A Framework for the Law as It Affects Persons with Disabilities: Advancing Substantive

Equality for Persons with Disabilities through Law, Policy and Practice (2012). 2 Ibid, iii.

3 Commercial Bank of Australia Limited v Amadio (1983) 151 CLR 447.

4 A note about terminology. There is much debate about the appropriate terminology to describe a person who has a

disability. Historical terms such as invalids, handicapped and retarded have been abandoned in modern literature for terms placing the personhood at the forefront of identity. There is little discussion of the converse population group. Normal has been abandoned as a term, because it assumes that people who are disabled are abnormal. Able bodied is sometimes used, but this does assume physical disability is the reference group. For the purposes of this paper, and for simplicity, the author has elected to use the terms “disabled” and “enabled”. This is not intended to convey

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yet that same vulnerability can create doubts as to capacity in other contexts.6 The disjuncture between

Amadio disability and application of cultural constructions of disability are evident in the legal context of

forced sterilisation, indefinite detention without conviction, failure to prosecute abuse and overrepresentation

of the disabled in the criminal justice system.

This paper operates from an Amadio presumption of disability; that vulnerability does not render an

individual immune to legal protections, but requires the application of additional safeguards to ensure legal

capacity.

For the purposes of this paper, disability is “the total or partial loss of the person’s bodily or mental

functions, or of a part of the body, the presence in the body of organisms causing disease or illness, or the

malfunction, malformation, or disfigurement of a part of the person’s body.”7

2 Early days

A summary of the legislative history of disability specific laws is provided at Error! Reference source not

found. Error! Reference source not found.. The data therein identifies the starting point for

Commonwealth disability law, followed by three main periods of legislative reform:

Upon federation, the Commonwealth was vested with a Constitutional power to pay invalid

pensions,8 with the first disability legislation passed in 1908.

9

inferiority and superiority respectively, but simply to acknowledge the relative positions in which people find themselves when social and legal constructs either disable or enable their participation on the basis of various types of functionality. This terminology also allows for the reality that certain individuals are disabled in certain circumstances, but enabled in others. A person who has a loss of vision may be disabled in reading a street sign, but enabled in carrying on a telephone conversation. A person who does not understand Auslan may be disabled in a conversation conducted in Auslan, but enabled in reading a written text. This language usage accepts the premise of the social model of disability, ie that impairment is enacted on a social stage, and the inability of the community to accommodate this impairment creates the lived experience of disability. It also accepts that impairment exists, without any social context at all, and it is not the role of the law to invalidate the experience of impairment. The terms are also shorter. Reading “persons with disability” and “persons without disability” repeatedly is unnecessary when there is a simpler expression. 5 Including protective measures such as guardianship and nominee arrangements, public advocate and independent

third person, diversion programs, consumer protections, reportable deaths. 6 Including assumed reductions in capacity to parent, capacity to provide evidence – as a witness, or a complainant,

capacity to stand trial, capacity to vote, capacity to live a valued life, capacity to decide on one’s own medical treatment. 7 Butterworths Concise Australian Legal Dictionary (2004), 128. The United Nations definition is broader than this,

including “all persons with disabilities including those who have long-term physical, mental, intellectual or sensory impairments which, in interaction with various attitudinal and environmental barriers, hinders their full and effective participation in society on an equal basis with others. However, this minimum list of persons who may claim protection under the Convention does not exhaust the categories of the disabilities which fall within the it nor intend to undermine or stand in the way of wider definition of disabilities under national law (such as persons with short-term disabilities). It is also important to note that a person with disabilities may be regarded as a person with a disability in one society or setting, but not in another, depending on the role that the person is assumed to take in his or her community. The perception and reality of disability also depend on the technologies, assistance and services available, as well as on cultural considerations.” (United Nations, UN Enable United Nations <http://www.un.org/esa/socdev/enable/faqs.htm> ), however this paper is focussed on the application of Australian legal concepts, and the Butterworths definition is broadly consistent with the usage in Disability Discrimination legislation, the most common instrument referring to disability in broad terms. 8 Commonwealth of Australia Constitution Act, s 51xxiii.

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1974: in the early days of the disability rights movement under Whitlam government,;

1983-95: immediately after the International Year of Disabled Persons under the Hawke/Keating

government,; and

2008-13 under the Rudd/Gillard government.

There are clear periods of reform under the Australian Labor Party (ALP) and conservatism under the

Liberal National Party (LNP). Further analysis of the period since 1970 reveals a range of reform activities:

Increased support for charitable organisations providing services to the disabled;10

New forms of welfare payment for the disabled and their families;11

Establishment of advisory, rights and other bodies12

and development of disability strategies;13

Regulation of service providers and funding;14

Agreements with state governments;15

Rights based legislation;16

and

Tax concessions.17

Each change of government has been preceded by an increase in reports related to disability; prior to the

election of the Whitlam government;18

prior to the dismissal of Whitlam;19

the election of the Hawke

government;20

the election of the Howard government;21

and the election of the Rudd government.22

9 Invalid and Old Age Pensions Act 1908 (Cth).

10 In 1970-71 (LNP) and 1974 (ALP).

11 1974 (ALP) and 1983 (ALP).

12 1983 (ALP), 1985 (ALP), 1986 (ALP), 2008 (ALP), 2012 (ALP).

13 1994 (ALP), 2011 (ALP).

14 1983 (ALP), 1986 (ALP), 2013 (ALP).

15 1991 (ALP), 2011 (ALP).

16 1992 (ALP), 2013 (ALP).

17 2006 (LNP).

18 Standing Committee on Health and Welfare, Parliament of Australia, Mentally and Physically Handicapped Persons

in Australia (1971). 19

Standing Committee on Health and Welfare, Parliament of Australia, Rehabilitation Services for the Disadvantaged (Handicapped) (1974), National Committee of Inquiry Into Compensation Rehabilitation, Parliament of Australia, C.L.D. Meares and A.O. Woodhouse, Report of the National Committee of Inquiry Into Compensation and Rehabilitation in Australia (1973), Ronald F Henderson and Commission of Inquiry into Poverty, Parliament of Australia, Poverty in Australia / Commission of Inquiry into Poverty (1976). 20

Australian Bureau of Statistics, Handicapped persons, Australia, 1981 (1981). 21

Standing Committee on Community Affairs, Parliament of Australia, Inquiry into Matters Pertaining to the Marketing of the Disability Reform Package (1994), Peter Baume, Kathleen Kay and Department Of Human Services, (Cth), Working solution : report of the Strategic Review of the Commonwealth Disability Services Program / Peter Baume, Kathleen Kay (1995), F. Hilmer, M Raynor and G. Taperell, National Competition Policy (1993) with respect to charities and their accountability. 22

Standing Committee on Mental Health, Parliament of Australia, A national approach to mental health: From crisis to community - Final report (2006), Erebus International, Report of the evaluation of the Commonwealth Disability Strategy [electronic resource] / Erebus International, PANDORA electronic collection (2006), Standing Committee on Community Affairs, Parliament of Australia, Funding and operation of the Commonwealth State/Territory Disability Agreement (2007).

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While an ALP victory has historically signalled an increase in disability focus, in prior ALP governments the

primary focus has been on legislative change, followed by ongoing review, and where applicable, the

establishment of specialist bodies. The current Executive has reversed this trend, appointing specialist

councils and bodies at the outset, seeking reports and submissions, and lastly, enacting legislation.23

With a federal election scheduled for September, and the potential for a change of government, it is unclear

what the future holds for disability policy and legislation in Australia. A traditional LNP response would be

conservative, with a significant slowdown of reforms and pressure on funding. The passage of the NDIS

through both houses of parliament in 2013 has been a significant reform, and one which is unlikely to be

reversed.

Other significant milestones in legislative history provide insights into potential outcomes of a return to LNP

government.

The passage of the Disability Discrimination Act in 199224

(DDA) created a legislative basis for actions on

the basis of discrimination. The Human Rights and Equal Opportunity Commission cases which followed25

began the process of creating a body of disability law. Although the 1995 High Court decision in Brandy v

Human Rights and Equal Opportunity Commission26

(Brandy) redirected these cases to the Federal Court,

with the resultant barriers of cost and accessibility, there continue to be complaints heard by both the

Australian Human Rights Commission (AHRC) and the Federal Court.27

During the period of reduced

reform under Howard, cases continued to be heard in the Federal and High Courts,28

and the AHRC

continued to conciliate complaints, develop standards and write reports and recommendations.29

In the event that the LNP forms government in September 2013, it can reasonably be expected that

legislative reform will slow significantly, if not cease altogether, and the action will move to the courts.

23

Disability Investment Group, Aviation Access Working Group and National Disability Council in 2009; followed by National People with Disabilities and Carers Council, Shut out : the experience of people with disabilities and their families in Australia : National Disability Strategy consultation report (2009); Disability Investment Group, The Way Forward: A New Disability Policy Framework for Australia (2009), Productivity Commission, Disability Care and Support (2011) culminating in National Disability Insurance Act 2013 (Cth). 24

Disability Discrimination Act 1992 (Cth). 25

See for eg X v Tasmania [1994] HREOCA 15, Scott and Disabled Persons International v Telstra [1995] HREOCA 24. 26

Brandy v Human Rights and Equal Opportunity Commission (1995) 183 CLR 245. 27

While the AHRC can not adjudicate, but is limited to conciliation, significant numbers of complaints are resolved through this process on an annual basis. (see Error! Reference source not found. Error! Reference source not found.). AHRC conciliations do not create precedent, so the ability to develop common law principles rests with the courts. 28

For eg Purvis v New South Wales (Department of Education and Training) (2003) HCA 62. 29

For eg Australian Human Rights Commission, 'Initial Draft: Disability Standards for Employment' (1996) ; Disability Standards for Accessible Public Transport 2002 (Cth; Disability Standards for Education 2005 (Cth; Disability (Access to Premises – Buildings) Standards 2010 , Australian Human Rights Commission, 'Paving the way to Electoral Equality: New Access Standards for Polling Booths' (2000) <http://www.humanrights.gov.au/about/media/media_releases/2000/00_8.html> at 31 December 201; Australian Human Rights Commission, 'WORKability II: Solutions - People with Disability in the Open Workplace, Final Report of the National Inquiry into Employment and Disability' (2005) ; Australian Human Rights Commission, Issues Paper 1: Employment and Disability – The Statistics (2005).

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The ability to take legal action on disability issues has, to date, been constrained by the absence of legally

enforceable rights.30

The NDIS contains a range of rights, the enforceability of which is yet to be considered

judicially.

In the 1970’s the outcome of the Inquiry on Poverty31

lead to a claim that ‘handicap is the greatest single

cause of poverty in Australia.’32

[Woodhouse] argued that … reliance on common law, and the adversarial mode of the courts, lead to

inequitable settlements leaving most uncompensated and to forms of compensation which did not

provide ongoing support for those suffering injury or disabling illness.”33

The disability rights movement of the 1970’s and deinstitutionalisation of the 1980’s did not provide a legal

basis for asserting rights because

[w]hen Australian governments took the enlightened step of closing the Dickensian institutions in

which people with disabilities had been locked away, they failed to design, let alone establish, a

modern support system that was sufficiently comprehensive and forward thinking.34

The DDA of the 1990’s has achieved limited success,35

reform of disability services and funding at

Commonwealth and State level have provided limited remedies in relation to existing services. Until the

NDIS, the main source of disability rights in Australian law was the Convention on the Rights of People with

Disabilities (CPRD),36

which, while ratified, has not been passed legislatively. According to Vickery J:

The shift to a human rights based approach to disability, which is sought in the CRPD, calls for

signatory States to effect fundamental changes in government programmes and policies, and

undertake changes and development of domestic law as it affects the disabled.37

Whether the NDIS is capable of delivering this type of change is considered in this paper.

B The social context of disability

Social change is a bit like a solar eclipse. It all depends on achieving a (rare) coincidence of forces.

… [I]n the field of disability ..law has little to do with it, to the chagrin of lawyers and politicians...

Rather, it is the socio-political ingredients of change and reform which are central.38

30

Peter Johnston and Su-Hsien Lee, 'Forcing the issue: Are there legal means to enforce Government obligations to provide financial support for carers of children with intellectual disabilities?' in Anthony Shaddock et al (eds), Intellectual Disability and the Law: Contemporary Australian Issues (2000) 31, 35. Johnston and Lee consider common law alternatives including the parens patriae jurisdiction of the Supreme Courts, discrimination law, Social Security law and private tort, finding no legally enforceable right outside of very specific circumstances. 31

Ronald F Henderson and Commission of Inquiry into Poverty, Parliament of Australia, Poverty in Australia / Commission of Inquiry into Poverty (1976). 32

Mendelsohn Ronald , (1979) The Condition of the People; Social Welfare in Australia 1900-1975, Sydney, George Allen and Unwin , London, 191, quoted in Brian Howe, 'Empowering the Disabled' (Paper presented at the ACE National Conference, Sunshine Coast, 2004), 2. 33

Brian Howe, 'Empowering the Disabled' (Paper presented at the ACE National Conference, Sunshine Coast, 2004), 3. 34

Bruce Bonyhady, 'Support in short supply for disabled', The Australian (online), May 7, 2009. 35

See further discussion below. 36

Convention on the Rights of Persons with Disabilities 2006, Australian Treaty Series [2008] ATS 12. 37

Nicholson & Ors v Knaggs & Ors [2009] VSC 64, [13]-[15].

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The social context of disability both informs and complicates the legal story of disability in Australia.

Behind the policies of disability enacted on the federal political stage, there are competing discourses that

underpin the polarised responses of political inertia, and the rush for significant reform.

Changing social attitudes towards disability, identity, social welfare, medicine and the family have

significance for the experience of disablement and the definition of an appropriate legal framework.

At federation, the prevailing attitude to disability was one of out of sight, out of mind. Situated in locations

out of sight to the general public,39

on top of hills and other secluded environments,40

surrounded by

unassailable ha-ha walls,41

asylums operated as a “dumping ground” 42

for society’s outcasts. Segregated

institutions were the main housing for the disabled. 43

The terminology of the time referred to mental health patients as “lunatics”,44

those with physical disability

as “incurable”45

, and the intellectually disabled as “imbeciles”, “idiots”, “feeble-minded”.46

Seclusion was

permanent in institutions underscored by labels such as the Talbot Colony for Epileptics.47

As times changed, the “lunatics” became the “insane”,48

and later still the Department for the Insane became

the Department for Mental Hygiene.49

The physically disabled passed through “crippled”50

to

“handicapped”51

and “spastic”.52

The intellectually disabled became “retarded”,53

and fears of a “menace to

the future of the Australian people” prompted permanent confinement. 54

38

Terry Carney, 'Social citizenship rights for people with disabilities: A role for the law?' in Anthony Shaddock et al (eds), Intellectual Disability and the Law: Contemporary Australian Issues (2000) 49, 49. 39

Natasha Mitchell, 'Up the Line to Goodna: Stories from Inside the Asylum' (2008) <http://www.abc.net.au/radionational/programs/allinthemind/special-series-part-1-of-3-up-the-line-to-goodna/3272372> at 9 February 2013. 40

See for example Yarra Bend Asylum, Kew Cottages etc. Kew Cottages History <http://www.kewcottageshistory.com.au/> at 15 January 2013. 41

Originally used to keep cattle out of paddocks without interrupting the view on rural properties, similar to those used in modern zoos. For an example, from the Kew Asylum, see: Historical Walk, Kew Lunatic Asylum <http://www.asap.unimelb.edu.au/pubs/articles/asa97/gifs/KEWwlk1.jpg> at 15 January 2013 . 42

Natasha Mitchell, 'Up the Line to Goodna: Stories from Inside the Asylum' (2008) <http://www.abc.net.au/radionational/programs/allinthemind/special-series-part-1-of-3-up-the-line-to-goodna/3272372> at 9 February 2013. 43

Sarah Parker and Karen R Fisher, 'Facilitators and Barriers in Australian Disability Housing Support Policies: Using a Human Rights Framework' (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310> at 25 February 2013. 44

Kew Lunatic Asylum, Ararat Lunatic Asylum, Adelaide Lunatic Asylum, Parkside Lunatic Asylum are examples of institutions built in this era. 45

Home for the Incurables in Adelaide 46

Kew Cottages History <http://www.kewcottageshistory.com.au/> at 15 January 2013 47

Royal Talbot Rehabilitation Centre <http://www.austin.org.au/royal-talbot-rehabilitation-centre#Section3> at 12 January 2013 48

The Lunacy Act 1903 (WA), s33 changed the titles from “lunatic asylum” to “hospital for the insane.” 49

Neil Rees, 'Learning From The Past, Looking to the Future: Is Victorian Mental Health Law Ripe for Reform?' (Paper presented at the Mental Health Review Board of Victoria’s 20th Anniversary Conference, Melbourne, 2007), 4. 50

Eg Crippled Children’s Association, History of Disability in South Australia - Education <http://history.dircsa.org.au/1900-1999/education/> at 16 January 2013 51

Eg Regency Park Centre for Physically Handicapped Children, History of Disability in South Australia - Education <http://history.dircsa.org.au/1900-1999/education/> at 16 January 2013 52

Eg SA Spastic Paralysis Welfare Association Inc, History of Disability in South Australia - Education <http://history.dircsa.org.au/1900-1999/education/> at 16 January 2013

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While a shift towards a rights based approach emerged in the 1960s, intensifying in the 1980s; resulting in

the closure of large institutions,55

as recently as the 1980’s people with an intellectual disability were being

caged, with visitors poking them with a stick.56

In the period from 1981-1996, there was an almost 50%

decrease in the institutional residence of children under the age of 15.57

The conceptual shift is critical. As Jones argue, personhood is linked with inclusion and participation:

“In order to bring about change, people with disabilities need to have a presence in the community,

to be seen as participants in social discourse and as part of the fabric of societies in which they live.

By being in the classroom, the cinema and the supermarket, and from being on public transport and

in the streets, people with disabilities become no different from anyone else. “Abnormal” behaviour

or unusual appearance will then become part of the wide range of normal everyday experience,

which already incorporates the diversity of age, ethnicity and sexuality”58

The cultural shift was cumulative; the Productivity Commission refers to a “generation of children with

disabilities ... moving through mainstream education system … seeking higher education and employment.”

59 Greater contact between the disabled and the broader community both reduced barriers to inclusion and

created new accessibility issues.60

Institutionalisation of the disabled, and the subsequent rush to deinstitutionalisation hurled the disabled into

the mainstream of a rapidly evolving social context.

1 The Other

Deinstitutionalisation commenced alongside decolonisation, in an era where civil rights challenged the Euro-

centric concept of the “average person.”

“We live in an age where an able-bodied white (usually Christian) hetero-sexual man is the gold

standard in our societies. Say the talk is about ‘the leading scientist’, ‘the best painter’, or ‘the

greatest composer’, in all of these phrases the general expectation seems to be that the person

belongs to the above-mentioned group. However, if the person happens to be, say, a woman,

53

Eg Mentally Retarded Children’s Society of SA Inc. History of Disability in South Australia - Sheltered Workshops <http://history.dircsa.org.au/1900-1999/sheltered-workshops/> at 16 January 2013 54

Kew Cottages History <http://www.kewcottageshistory.com.au/> at 15 January 2013 55

Sarah Parker and Karen R Fisher, 'Facilitators and Barriers in Australian Disability Housing Support Policies: Using a Human Rights Framework' (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310> at 25 February 2013 56

Office of the Public Advocate (SA), Annual Report 2011-1012 (2012), 40. 57

Healey, Justin (ed), Disability Rights, Issues in Society (2005), 10 58

Melinda Jones, 'Can international law improve mental health? Some thoughts on the proposed convention on the rights of people with disabilities' (2005) 28(2) International Journal of Law and Psychiatry 183, 194. 59

Productivity Commission, Review of the Disability Discrimination Act 1992 (2003), 2-3. 60

Ibid.

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disabled, black or a Muslim this characteristic will be mentioned fairly quickly when his or her

achievements are discussed.”61

In direct challenge to the standard, the “other” demanded rights for women, indigenous, the culturally and

linguistic diverse, persons of other religions,62

lesbian gay bisexual and transgender (LBGT), youth, and the

aged. Disability rights activity grew in the 60s, inspired by gay and American civil rights movements.63

These “Other” groups often carried a certain homogeneity or commonality that disability does not.

Women account for roughly half the population; there is a woman in every family,64

whether present or not.

Not every family experiences disability. Genetically inherited conditions predispose certain family

groupings to far higher incidences of disability,65

and others have no experience of disability at all.

Race is genetically transmitted, and is identifiable as a group, including the effects of multiracial marriage.

Disability may have genetic links, but may also be caused by disease, accident, or environmental factors.66

Disability identity is blurred; an accident or illness can shift an individual from enabled to disabled at any

time.67

Language, culture and religion are transmitted through social groups. Disability has no such transmission.

The most significant differentiator remains the requirement for accommodation. The infrastructure of our

community is based on the needs of enabled citizens, and the level of exclusion of the disabled is a

significant barrier to participation. Changing attitudes is only the first step in disability rights; changing

infrastructure is required for participation.68

2 Social welfare

The political context of poverty and welfare provide an important backdrop to any cultural understanding of

disability. While 45% of disabled people are living near or under the poverty line,69

they are subject to

ongoing scepticism about their entitlement to welfare.

61

Tujia Takala, 'Gender, disability and personal identity: Moral and political problems in community thinking' in Simo Vahmas and Tom Shakespeare Kristjana Kristiansen (ed), Arguing about Disability; philosophical perspectives (2010) 124, 125 62

Or none at all 63

Sarah Barton, 'The weird and wonderful story of the disability rights movement' (2013) RampUp, 7 March 2013 <http://www.abc.net.au/rampup/articles/2013/03/07/3710089.htm> at 7 March 2013 64

Which will remain the case so long as women are the only means of giving birth! 65

In the extreme are conditions such as Machado Joseph Disease (MJD), an inherited, autosomal dominant disorder, where each child of a person who carrying defective gene has a 50% chance of developing the disease. Data for the Groote Eylandt community suggest that a prevalence exceeding worldwide prevalence by a factor of 100. See MJD Foundation Inc, 'Submission Number 279 to Productivity Commission Inquiry on Disability Care and Support' (2009). 66

For example the disability caused by in utero exposure to Thalidomide, post polio syndrome, side effects of cancer or cancer treatment, motor vehicle accidents, workplace injury etc. 67

Sarah Barton, 'More weird and wonderful stories of the disability rights movement' (2013) RampUp, 14 March 2013 <http://www.abc.net.au/rampup/articles/2013/03/14/3715851.htm> at 14 March 2013. 68

Sarah Barton, 'More weird and wonderful stories of the disability rights movement' (2013) RampUp, 14 March 2013 <http://www.abc.net.au/rampup/articles/2013/03/14/3715851.htm> at 14 March 2013. 69

PwC Australia, Disability expectations - Investing in a better life, a stronger Australia (2011), 3.

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Aside from the commonly held belief that Medicare and the social security system are sufficient disability

support,70

there is an ongoing discourse about welfare dependence, with claims that the Disability Support

Pension (DSP) is paid to large numbers of people defrauding the system.71

3 The miracle of medicine

Medicine plays an important role in the disability discourse.

In the modern era it appears there is nothing that the practice of medicine cannot improve, if not cure;

malaria, polio, cancer, infertility, impotence, a disliked facial feature, too large or too small breasts,

unwanted pregnancy, deafness. Public policy has reduced morbidity rates from traffic accidents, smoking,

even swimming pools, creating a sense of security wherein injury or impairment causes discomfort and

anxiety.

Into this space, disability stands alone as a failure of nature, science and policy. Our discomfort with an

inability to resolve the “ugliness” of “deformity”72

is matched by our difficulty comprehending the varieties

of neurological, intellectual and social impairment,73

the impact both of the impairments themselves, and the

contribution of the social response to them, whether posited as a health problem, a lack of ability, or different

type of function.74

4 Changing families

In an era of apologies for state removal of children,75

and acknowledgement that the will of parents was

overborne, the separation of disabled children is a complex phenomenon whereby often both parents and the

state accepted the need for familial separation.76

While removal of enabled children was based on presumptions about parental capacity;77

the removal of

disabled children were removed to spare parents the burden of their care.78

70

Melinda Jones and Lee Ann Basser Marks (eds), Explorations on Law and Disability in Australia (2000), 1. 71

Jessica Brown, 'Disability pension needs tough love' (2011) 16 December 2011 <http://www.cis.org.au/publications/ideasthecentre/article/3802-disability-pension-needs-tough-love> at 31 October 2012, Jessica Brown, 'The welfare revolution that has passed disability pensioners by' (2011) Online Opinion, 12 October 2011 <http://www.onlineopinion.com.au/view.asp?article=12727> at 12 October 2011, Andrew Bolt, 'Not quite such a helpless victim', Herald Sun (online), 23 January 2013 2013, , Rachel Siewert, 'Time for a little sense in the welfare debate' (2011) 25 May 2011 <http://www.abc.net.au/unleashed/2729822.html> at 25 May 2011, Press Council Adjudication No. 1511: Naomi Anderson/The Australian, 23 September 2011, Naomi Anderson, 'Separating fact from fiction in the disability support pension debate' (2011) Online Opinion, 28 September 2011 <http://www.onlineopinion.com.au/view.asp?article=12667> at 28 September 2011. 72

Steven D Edwards, 'Definitions of Disability' in Kristjana Kristiansen, Simo Vahmas and Tom Shakespeare (eds), Arguing about Disablity: philisophical perspectives (2009) vol 30-41, 39. 73

See discussion re ADHD and Aspergers in Simo Vehmas and Pekka Makela, 'The ontology of disability and impairment' in Kristjana Kristiansen, Simo Vahmas and Tom Shakespeare (eds), Arguing about disabiliy: philosphical perspectives (2009) 42, 49. Complicating this picture are recent discoveries about neuroplasticity, which are beyond the scope of this paper. 74

Jerome E Bickenbach, 'Disability, non-talent and distributive justice' in Simo Vahmas and Tom Shakespeare Kristjana Kristiansen (ed), Arguing about Disability: philosphical perspectives (2010) 105, 112-114. 75

Prime Minister Kevin Rudd on 13 February 2008, re the Stolen Generation and Prime Minister Julia Gillard on 13 March 2013, re Forced Adoptions. 76

Disability Council of NSW, 'Submission 77 to the Senate Standing Committee on Community Affairs: Inquiry into Children in Institutional Care' (2005)

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The closure of institutions created new problems, with a shift of responsibility from institutions to an

unprepared and under resourced community; 79

new issues began to appear, including the housing of young

people in aged care facilities.80

There is a distinct schism between the generations in this respect, as significant shifts in policy on

institutionalisation were not necessarily congruent with other shifts taking place in the community. As noted

by Manne:

In history, timing can be everything. Deinstitutionalisation occurred at the same historical moment as

the great leap forward into the free market neo-liberal age, and the feminist revolution. …We are

currently one of the lowest taxing nations in the OECD, which means there is less money to allocate

to essential social services for people with a disability and their families. … [T]they shut down

institutions … but failed to institute new programs to replace them. Former live-in patients often

ended up homeless or in prison. … The old era had very clear assumptions about care; a married

man worked and a housewife stayed at home.… Yet here, too, a revolution was underway. Women

were now at work in ever increasing numbers. These family caregivers needed new labour market

regulations, such as carer’s leave, to help them manage work and care. Yet, in the new economic

order, such entitlements were not forthcoming.81

Error! Reference source not found. Error! Reference source not found. describes, in broad strokes, three

different cohorts of families with disability. Critical changes in the political and social landscape include:

An early period of rapid change in institutionalisation practices, and significant cost shifting from

institutions82

to families83

An increased dependence on dual incomes for many families;84

An increased casualisation of the workforce and reliance on contract labour;85

77

Real, or otherwise, bearing in mind the significant number of children removed from the care of indigenous parents, single mothers, and other forced separations. 78

Disability Council of NSW, 'Submission 77 to the Senate Standing Committee on Community Affairs: Inquiry into Children in Institutional Care' (2005). 79

Ibid 13. 80

Sarah Parker and Karen R Fisher, 'Facilitators and Barriers in Australian Disability Housing Support Policies: Using a Human Rights Framework' (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310> at 25 February 2013. 81

Anne Manne, 'Two Nations: The Case for a National Disability Insurance Scheme' (2011) August 2011 <http://www.themonthly.com.au/case-national-disability-insurance-scheme-two-nations-anne-manne-3636> at 12 May 2012. 82

Mainly run by charities, with some funding by government. 83

Without a corresponding increase in support to the families, or reduction in support for the charitable or governmental sector, resulting in a surge in power to those organisations that retained funding. See also Lauren J. Breen, 'Early childhood service delivery for families living with disability: Disabling families through problematic implicit ideology' (2009) 34(4) Australasian Journal of Early Childhood 14. 84

Australian Bureau of Statistics, 4442.0 - Family Characteristics, Australia, 2009-10 (2011). 85

Anti-Discrimination Board NSW, Demographic shifts highlight carers' responsibilities, Equal Time (2002).

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An ageing population and consequently both an increase in age related disability, and decrease in

ratio of available others to provide care;86

and

Reduction of the care availability of informal carers as family sizes continue to reduce and single

parent families are more common,87

and increased workforce participation by women.88

C The journey to an NDIS

In March 2013 Parliament unanimously passed the National Disability Insurance Act 2013 (Cth) to fund

services and support for disability.

The journey to an NDIS began quietly, almost stealthily.

In previous decades the disability policies of the right and left of politics were consistent with their core

values: for the left, additional services and payments, for the right, a focus on productivity and individual

choice. Criticisms were equally predictable, for the left, wasted public funding with no improvement in

outcome, for the right an unfair rationing of minimal services to the most vulnerable.

In 2007, when the ALP took government, either side of politics was going to experience the same external

pressures: a global financial crisis, an ageing population, reductions in available workforce and limited

capacity for unpaid care, ever increasing welfare costs of unemployed people with disabilities, absence of a

cohesive and functional national strategy, and a plethora of state and commonwealth agreements. The

Commonwealth-State funding agreement was unsigned, and funding was set to cease within months of the

election. A review of the election promises of the ALP in 200789

bears no relationship to the current

strategy, and there is no mention of a wide range of measures that have occurred in the interim.

In April 2009, then Parliamentary Secretary for Disability, Bill Shorten addressed the Australian Press Club:

I want to talk of another group of Australians…whose circumstances are vastly different from most,

whose days and nights are a mighty struggle to achieve a capacity and independence that others of us

have never once wondered about and always presumed to be available; Australians … whose voices

are rarely heard by the broader many who live in their midst and otherwise occupy this nation.… I

didn’t yet understood the scale of the problem in Australia, or how hard it was for people so injured,

so traumatised, so sidelined, so internally exiled to get the help they need.

I shared the same “out of sight, out of mind” attitude of too many other people…

That attitude – and the passive discrimination that comes with it – is one of the main reasons why

people with disability are often defined by their disability, and not by their unique humanness. Why

86

PwC Australia, Disability expectations - Investing in a better life, a stronger Australia (2011), 33. 87

Ibid, 40. 88

Anti-Discrimination Board NSW, above n 36. 89

A high level copy of these is available Error! Reference source not found. - Error! Reference source not found..

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a whole and natural life is withheld from them, or seems impossibly hard to reach. It is why they are

still not fully participating in what Australia has to offer.90

Less than three weeks after Shorten’s speech to the Press Club, a paper91

that would change the entire

disability landscape was presented to the 2020 Summit. Listed under “Big Ideas’ on p 173 of the final report

is this line: “Establish a National Disability Insurance Scheme”.92

Following this summit there were NDIS recommendations from the Pension Review Report93

two Disability

Investment Group reports in 2009,94

the Shut Out Report,95

(Shut Out) and

the Who Cares? Report.96 The

Productivity Commission was asked to conduct an enquiry, and their final report was delivered in 2011.

The NDIS Bill was introduced to Parliament in November 2012, and passed both houses in March 2013.

The NDIS is a piece of legislation that provides a broad based and equitable funding source for all

Australians, but focuses on individual productivity and is targeted in a number of key areas. It has been

effectively designed by the economically focussed Productivity Commission and is endorsed by the key

disability advisory bodies, as well as the Council of Australian Governments (COAG). It has been reviewed

by the Senate Committee for Community Affairs (Senate Committee), and along with over 1500 public

submissions, and public hearings in eleven locations, there has not been a single dissenter.97

Now for the difficult part. As noted in the Senate Report:

If there are hiccups along the way, they are not signs that the NDIS was a bad idea or that

governments, stakeholders or families are doing anything wrong. It is just that this is a big thing and

we all need to be aware of that, and to give the NDIS the time to mature and grow into the system

that we all want it to be.98

1 The social context of the NDIS

While the Bill itself attracted a significant number of submissions, and Senate hearings were well attended,

the matter which attracted seemingly disproportionate attention was the change of name from NDIS to

DisabilityCare.

90

Bill Shorten, 'Right to an Ordinary Life – National Press Club' (Paper presented at the National Press Club, Melbourne, 2009) 91 Bonyhady BP, Sykes H. Disability reform: from crisis welfare to a planned insurance model. April 2008, unsighted. 92

Department of the Prime Minister and Cabinet, Australia 2020: Summit Final Report (2008). 93

Dr Jeff Harmer and Housing Department of Families, Community Services and Indigenous Affairs, Pension Review Report (2009), xix. 94

Disability Investment Group, The Way Forward: A New Disability Policy Framework for Australia (2009) and PriceWaterhouseCoopers’ Disability Investment Group, National Disability Insurance Scheme, Final Report, (2009). 95

National People with Disabilities and Carers Council, Shut out : the experience of people with disabilities and their families in Australia : National Disability Strategy consultation report (2009), 3. 96

Standing Committee on Family, Community, Housing and Youth, Parliament of Australia, Who Cares ...? Report on the inquiry into better support for carers (2009), 147. 97

Standing Committee on Community Affairs, Parliament of Australia, National Disability Insurance Scheme Bill 2012 (2013), 1, 14. 98

Mr Evans, Department of Premier and Cabinet, Tasmania, Proof Committee Hansard, 22 February 2013, p. 8, quoted in Standing Committee on Community Affairs, Parliament of Australia, above n 98, 16.

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As described by Craig Wallace “[w]ithin the click of a mouse, social media erupted with discussion … with

a mixed but overwhelmingly negative response to the new name.”99

Wallace argues that “the NDIS has

always been about much more than money - it's a new system - and for once, the choice of name really is

important and totemic.”100

The discomfort is similar, but different, through the lens of different commentators: “a moniker that puts

people with disability to one side - as people to be cared for. It spells more of the same”;101

“paternalistic,

charity-model, carer-centric rubbish that does very little to empower people with disabilities to exercise the

choice and control over our lives that the NDIS is intended to give us,”102

through “may not have been

intentionally offensive, when a group of people have suffered so much the least we can do is give them the

right to choose the way we talk about these topics”103

to “don’t really care about the name and despite what

the sector thinks the non-disability sector community will at least get some basic understanding that it is

about supporting people with disability.”104

It is clear that the NDIS carries with it the baggage of history, expectation, frustration, and momentum for

change. The effectiveness of the legislation is considered later in this report, but first we turn to the signs

and symptoms of disablement at law.

99

Craig Wallace, 'DisabilityCare: What's in a name?' (2013) RampUp, 21 March 2013 <http://www.abc.net.au/rampup/articles/2013/03/21/3720482.htm> at 21 March 2013 100

Ibid. 101

Iid. 102

Stella Young, 'DisabilityCare: a bad name but a good direction' (2013) RampUp, 22 March 2013 <http://www.abc.net.au/rampup/articles/2013/03/22/3721427.htm> at 22 March 2013. 103

Lauren Gawne, 'Finding the right words: The NDIS and apology for forced adoptions' (2013) 25 March 2013 <http://blogs.crikey.com.au/fullysic/2013/03/25/finding-the-right-words-the-ndis-and-apology-for-forced-adoptions/> at 25 March 2013. 104

Kelly Vincent, '“DisabilityCare” – The new dumb name for NDIS' (2013) 26 March 2013 <http://www.kellyvincentmlc.com/disabilitycare-the-new-dumb-name-for-ndis/> at 26 March 2013.