The road to an ndis

515 views

Published on

A section from a la

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
515
On SlideShare
0
From Embeds
0
Number of Embeds
28
Actions
Shares
0
Downloads
5
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

The road to an ndis

  1. 1. Lessons from HistoryA THEORETICAL FRAMEWORK FOR THE DEVELOPMENT OF DISABILITYLAW IN AUSTRALIANAOMI ANDERSONThis document contains Section 2 only.
  2. 2. © Naomi AndersonPage 2 of 14I RESEARCHING DISABILITY LAWIn December 2012 the Law Commission of Ontario released “A Framework for the Law as It AffectsPersons with Disabilities”1(Ontario Report). The final report of a four year project, the foreword reflectsthe research barriers encountered in this project:Persons with disabilities have often been marginalized because law and policy has failed to respondto 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. … [Thisframework] is meant to provide a systematic way to guide inclusion of the needs and experiences ofpersons with disabilities in the review and development of law, policy and practice.2The research project informing this paper was developed using a similar process of review, analysis andrecommendation 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 theparticular needs of the disabled, taking into consideration the gaps in law and practice leading to thenoted 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 areaof disability.This section summarises the outcomes of the first step in this project.A A short history1 Disability and lawAt law there are special provisions for disability, but the term “disability” as most law students willencounter it is not a disability in the common usage sense, but an Amadio3disability; a vulnerability.It is this notion of vulnerability that provides a legal concept of accommodation, but for the disabled4toooften results in exclusion or invisibility. Vulnerability in certain contexts requires special protection,5and1Law Commission of Ontario, A Framework for the Law as It Affects Persons with Disabilities: Advancing SubstantiveEquality for Persons with Disabilities through Law, Policy and Practice (2012).2Ibid, iii.3Commercial Bank of Australia Limited v Amadio (1983) 151 CLR 447.4A note about terminology. There is much debate about the appropriate terminology to describe a person who has adisability. Historical terms such as invalids, handicapped and retarded have been abandoned in modern literature forterms 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 bodiedis sometimes used, but this does assume physical disability is the reference group. For the purposes of this paper, andfor simplicity, the author has elected to use the terms “disabled” and “enabled”. This is not intended to convey
  3. 3. © Naomi AndersonPage 3 of 14yet that same vulnerability can create doubts as to capacity in other contexts.6The disjuncture betweenAmadio disability and application of cultural constructions of disability are evident in the legal context offorced sterilisation, indefinite detention without conviction, failure to prosecute abuse and overrepresentationof the disabled in the criminal justice system.This paper operates from an Amadio presumption of disability; that vulnerability does not render anindividual immune to legal protections, but requires the application of additional safeguards to ensure legalcapacity.For the purposes of this paper, disability is “the total or partial loss of the person’s bodily or mentalfunctions, or of a part of the body, the presence in the body of organisms causing disease or illness, or themalfunction, malformation, or disfigurement of a part of the person’s body.”72 Early daysA summary of the legislative history of disability specific laws is provided at Error! Reference source notfound. Error! Reference source not found.. The data therein identifies the starting point forCommonwealth disability law, followed by three main periods of legislative reform: Upon federation, the Commonwealth was vested with a Constitutional power to pay invalidpensions,8with the first disability legislation passed in 1908.9inferiority and superiority respectively, but simply to acknowledge the relative positions in which people findthemselves when social and legal constructs either disable or enable their participation on the basis of various typesof functionality. This terminology also allows for the reality that certain individuals are disabled in certaincircumstances, but enabled in others. A person who has a loss of vision may be disabled in reading a street sign, butenabled in carrying on a telephone conversation. A person who does not understand Auslan may be disabled in aconversation conducted in Auslan, but enabled in reading a written text. This language usage accepts the premise ofthe social model of disability, ie that impairment is enacted on a social stage, and the inability of the community toaccommodate 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 termsare also shorter. Reading “persons with disability” and “persons without disability” repeatedly is unnecessary whenthere is a simpler expression.5Including protective measures such as guardianship and nominee arrangements, public advocate and independentthird person, diversion programs, consumer protections, reportable deaths.6Including 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 medicaltreatment.7Butterworths 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 sensoryimpairments which, in interaction with various attitudinal and environmental barriers, hinders their full and effectiveparticipation in society on an equal basis with others. However, this minimum list of persons who may claimprotection under the Convention does not exhaust the categories of the disabilities which fall within the it nor intendto 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 adisability in one society or setting, but not in another, depending on the role that the person is assumed to take in hisor her community. The perception and reality of disability also depend on the technologies, assistance and servicesavailable, 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 Australianlegal concepts, and the Butterworths definition is broadly consistent with the usage in Disability Discriminationlegislation, the most common instrument referring to disability in broad terms.8Commonwealth of Australia Constitution Act, s 51xxiii.
  4. 4. © Naomi AndersonPage 4 of 14 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/Keatinggovernment,; and 2008-13 under the Rudd/Gillard government.There are clear periods of reform under the Australian Labor Party (ALP) and conservatism under theLiberal 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 bodies12and development of disability strategies;13 Regulation of service providers and funding;14 Agreements with state governments;15 Rights based legislation;16and Tax concessions.17Each change of government has been preceded by an increase in reports related to disability; prior to theelection of the Whitlam government;18prior to the dismissal of Whitlam;19the election of the Hawkegovernment;20the election of the Howard government;21and the election of the Rudd government.229Invalid and Old Age Pensions Act 1908 (Cth).10In 1970-71 (LNP) and 1974 (ALP).111974 (ALP) and 1983 (ALP).121983 (ALP), 1985 (ALP), 1986 (ALP), 2008 (ALP), 2012 (ALP).131994 (ALP), 2011 (ALP).141983 (ALP), 1986 (ALP), 2013 (ALP).151991 (ALP), 2011 (ALP).161992 (ALP), 2013 (ALP).172006 (LNP).18Standing Committee on Health and Welfare, Parliament of Australia, Mentally and Physically Handicapped Personsin Australia (1971).19Standing 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 inAustralia (1973), Ronald F Henderson and Commission of Inquiry into Poverty, Parliament of Australia, Poverty inAustralia / Commission of Inquiry into Poverty (1976).20Australian Bureau of Statistics, Handicapped persons, Australia, 1981 (1981).21Standing Committee on Community Affairs, Parliament of Australia, Inquiry into Matters Pertaining to the Marketingof 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 charitiesand their accountability.22Standing Committee on Mental Health, Parliament of Australia, A national approach to mental health: From crisis tocommunity - Final report (2006), Erebus International, Report of the evaluation of the Commonwealth DisabilityStrategy [electronic resource] / Erebus International, PANDORA electronic collection (2006), Standing Committee onCommunity Affairs, Parliament of Australia, Funding and operation of the Commonwealth State/Territory DisabilityAgreement (2007).
  5. 5. © Naomi AndersonPage 5 of 14While an ALP victory has historically signalled an increase in disability focus, in prior ALP governments theprimary focus has been on legislative change, followed by ongoing review, and where applicable, theestablishment of specialist bodies. The current Executive has reversed this trend, appointing specialistcouncils and bodies at the outset, seeking reports and submissions, and lastly, enacting legislation.23With a federal election scheduled for September, and the potential for a change of government, it is unclearwhat the future holds for disability policy and legislation in Australia. A traditional LNP response would beconservative, with a significant slowdown of reforms and pressure on funding. The passage of the NDISthrough both houses of parliament in 2013 has been a significant reform, and one which is unlikely to bereversed.Other significant milestones in legislative history provide insights into potential outcomes of a return to LNPgovernment.The passage of the Disability Discrimination Act in 199224(DDA) created a legislative basis for actions onthe basis of discrimination. The Human Rights and Equal Opportunity Commission cases which followed25began the process of creating a body of disability law. Although the 1995 High Court decision in Brandy vHuman 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 theAustralian Human Rights Commission (AHRC) and the Federal Court.27During the period of reducedreform under Howard, cases continued to be heard in the Federal and High Courts,28and the AHRCcontinued to conciliate complaints, develop standards and write reports and recommendations.29In the event that the LNP forms government in September 2013, it can reasonably be expected thatlegislative reform will slow significantly, if not cease altogether, and the action will move to the courts.23Disability Investment Group, Aviation Access Working Group and National Disability Council in 2009; followed byNational People with Disabilities and Carers Council, Shut out : the experience of people with disabilities and theirfamilies in Australia : National Disability Strategy consultation report (2009); Disability Investment Group, The WayForward: A New Disability Policy Framework for Australia (2009), Productivity Commission, Disability Care and Support(2011) culminating in National Disability Insurance Act 2013 (Cth).24Disability Discrimination Act 1992 (Cth).25See for eg X v Tasmania [1994] HREOCA 15, Scott and Disabled Persons International v Telstra [1995] HREOCA 24.26Brandy v Human Rights and Equal Opportunity Commission (1995) 183 CLR 245.27While the AHRC can not adjudicate, but is limited to conciliation, significant numbers of complaints are resolvedthrough this process on an annual basis. (see Error! Reference source not found. Error! Reference source notfound.). AHRC conciliations do not create precedent, so the ability to develop common law principles rests with thecourts.28For eg Purvis v New South Wales (Department of Education and Training) (2003) HCA 62.29For eg Australian Human Rights Commission, Initial Draft: Disability Standards for Employment (1996) ; DisabilityStandards for Accessible Public Transport 2002 (Cth; Disability Standards for Education 2005 (Cth; Disability (Access toPremises – 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; AustralianHuman Rights Commission, WORKability II: Solutions - People with Disability in the Open Workplace, Final Report ofthe National Inquiry into Employment and Disability (2005) ; Australian Human Rights Commission, Issues Paper 1:Employment and Disability – The Statistics (2005).
  6. 6. © Naomi AndersonPage 6 of 14The ability to take legal action on disability issues has, to date, been constrained by the absence of legallyenforceable rights.30The NDIS contains a range of rights, the enforceability of which is yet to be consideredjudicially.In the 1970’s the outcome of the Inquiry on Poverty31lead to a claim that ‘handicap is the greatest singlecause of poverty in Australia.’32[Woodhouse] argued that … reliance on common law, and the adversarial mode of the courts, lead toinequitable settlements leaving most uncompensated and to forms of compensation which did notprovide ongoing support for those suffering injury or disabling illness.”33The disability rights movement of the 1970’s and deinstitutionalisation of the 1980’s did not provide a legalbasis for asserting rights because[w]hen Australian governments took the enlightened step of closing the Dickensian institutions inwhich people with disabilities had been locked away, they failed to design, let alone establish, amodern support system that was sufficiently comprehensive and forward thinking.34The DDA of the 1990’s has achieved limited success,35reform of disability services and funding atCommonwealth and State level have provided limited remedies in relation to existing services. Until theNDIS, the main source of disability rights in Australian law was the Convention on the Rights of People withDisabilities (CPRD),36which, 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 forsignatory States to effect fundamental changes in government programmes and policies, andundertake changes and development of domestic law as it affects the disabled.37Whether the NDIS is capable of delivering this type of change is considered in this paper.B The social context of disabilitySocial 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.3830Peter Johnston and Su-Hsien Lee, Forcing the issue: Are there legal means to enforce Government obligations toprovide 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 commonlaw alternatives including the parens patriae jurisdiction of the Supreme Courts, discrimination law, Social Security lawand private tort, finding no legally enforceable right outside of very specific circumstances.31Ronald F Henderson and Commission of Inquiry into Poverty, Parliament of Australia, Poverty in Australia /Commission of Inquiry into Poverty (1976).32Mendelsohn Ronald , (1979) The Condition of the People; Social Welfare in Australia 1900-1975, Sydney, GeorgeAllen and Unwin , London, 191, quoted in Brian Howe, Empowering the Disabled (Paper presented at the ACENational Conference, Sunshine Coast, 2004), 2.33Brian Howe, Empowering the Disabled (Paper presented at the ACE National Conference, Sunshine Coast, 2004), 3.34Bruce Bonyhady, Support in short supply for disabled, The Australian (online), May 7, 2009.35See further discussion below.36Convention on the Rights of Persons with Disabilities 2006, Australian Treaty Series [2008] ATS 12.37Nicholson & Ors v Knaggs & Ors [2009] VSC 64, [13]-[15].
  7. 7. © Naomi AndersonPage 7 of 14The 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 thatunderpin the polarised responses of political inertia, and the rush for significant reform.Changing social attitudes towards disability, identity, social welfare, medicine and the family havesignificance 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 locationsout of sight to the general public,39on top of hills and other secluded environments,40surrounded byunassailable ha-ha walls,41asylums operated as a “dumping ground” 42for society’s outcasts. Segregatedinstitutions were the main housing for the disabled. 43The terminology of the time referred to mental health patients as “lunatics”,44those with physical disabilityas “incurable”45, and the intellectually disabled as “imbeciles”, “idiots”, “feeble-minded”.46Seclusion waspermanent in institutions underscored by labels such as the Talbot Colony for Epileptics.47As times changed, the “lunatics” became the “insane”,48and later still the Department for the Insane becamethe Department for Mental Hygiene.49The physically disabled passed through “crippled”50to“handicapped”51and “spastic”.52The intellectually disabled became “retarded”,53and fears of a “menace tothe future of the Australian people” prompted permanent confinement. 5438Terry 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, 49.39Natasha 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 2013.40See for example Yarra Bend Asylum, Kew Cottages etc. Kew Cottages History<http://www.kewcottageshistory.com.au/> at 15 January 2013.41Originally used to keep cattle out of paddocks without interrupting the view on rural properties, similar to thoseused 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 .42Natasha 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 2013.43Sarah Parker and Karen R Fisher, Facilitators and Barriers in Australian Disability Housing Support Policies: Using aHuman Rights Framework (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310>at 25 February 2013.44Kew Lunatic Asylum, Ararat Lunatic Asylum, Adelaide Lunatic Asylum, Parkside Lunatic Asylum are examples ofinstitutions built in this era.45Home for the Incurables in Adelaide46Kew Cottages History <http://www.kewcottageshistory.com.au/> at 15 January 201347Royal Talbot Rehabilitation Centre <http://www.austin.org.au/royal-talbot-rehabilitation-centre#Section3> at 12January 201348The Lunacy Act 1903 (WA), s33 changed the titles from “lunatic asylum” to “hospital for the insane.”49Neil Rees, Learning From The Past, Looking to the Future: Is Victorian Mental Health Law Ripe for Reform? (Paperpresented at the Mental Health Review Board of Victoria’s 20th Anniversary Conference, Melbourne, 2007), 4.50Eg Crippled Children’s Association, History of Disability in South Australia - Education<http://history.dircsa.org.au/1900-1999/education/> at 16 January 201351Eg 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 201352Eg 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
  8. 8. © Naomi AndersonPage 8 of 14While a shift towards a rights based approach emerged in the 1960s, intensifying in the 1980s; resulting inthe closure of large institutions,55as recently as the 1980’s people with an intellectual disability were beingcaged, with visitors poking them with a stick.56In the period from 1981-1996, there was an almost 50%decrease in the institutional residence of children under the age of 15.57The 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 andin the streets, people with disabilities become no different from anyone else. “Abnormal” behaviouror unusual appearance will then become part of the wide range of normal everyday experience,which already incorporates the diversity of age, ethnicity and sexuality”58The cultural shift was cumulative; the Productivity Commission refers to a “generation of children withdisabilities ... moving through mainstream education system … seeking higher education and employment.”59Greater contact between the disabled and the broader community both reduced barriers to inclusion andcreated new accessibility issues.60Institutionalisation of the disabled, and the subsequent rush to deinstitutionalisation hurled the disabled intothe mainstream of a rapidly evolving social context.1 The OtherDeinstitutionalisation 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 goldstandard in our societies. Say the talk is about ‘the leading scientist’, ‘the best painter’, or ‘thegreatest composer’, in all of these phrases the general expectation seems to be that the personbelongs to the above-mentioned group. However, if the person happens to be, say, a woman,53Eg 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 201354Kew Cottages History <http://www.kewcottageshistory.com.au/> at 15 January 201355Sarah Parker and Karen R Fisher, Facilitators and Barriers in Australian Disability Housing Support Policies: Using aHuman Rights Framework (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310>at 25 February 201356Office of the Public Advocate (SA), Annual Report 2011-1012 (2012), 40.57Healey, Justin (ed), Disability Rights, Issues in Society (2005), 1058Melinda Jones, Can international law improve mental health? Some thoughts on the proposed convention on therights of people with disabilities (2005) 28(2) International Journal of Law and Psychiatry 183, 194.59Productivity Commission, Review of the Disability Discrimination Act 1992 (2003), 2-3.60Ibid.
  9. 9. © Naomi AndersonPage 9 of 14disabled, black or a Muslim this characteristic will be mentioned fairly quickly when his or herachievements are discussed.”61In direct challenge to the standard, the “other” demanded rights for women, indigenous, the culturally andlinguistic diverse, persons of other religions,62lesbian gay bisexual and transgender (LBGT), youth, and theaged. Disability rights activity grew in the 60s, inspired by gay and American civil rights movements.63These “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,64whether present or not.Not every family experiences disability. Genetically inherited conditions predispose certain familygroupings to far higher incidences of disability,65and 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.66Disability identity is blurred; an accident or illness can shift an individual from enabled to disabled at anytime.67Language, 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 ourcommunity is based on the needs of enabled citizens, and the level of exclusion of the disabled is asignificant barrier to participation. Changing attitudes is only the first step in disability rights; changinginfrastructure is required for participation.682 Social welfareThe political context of poverty and welfare provide an important backdrop to any cultural understanding ofdisability. While 45% of disabled people are living near or under the poverty line,69they are subject toongoing scepticism about their entitlement to welfare.61Tujia Takala, Gender, disability and personal identity: Moral and political problems in community thinking in SimoVahmas and Tom Shakespeare Kristjana Kristiansen (ed), Arguing about Disability; philosophical perspectives (2010)124, 12562Or none at all63Sarah 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 201364Which will remain the case so long as women are the only means of giving birth!65In 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 theGroote Eylandt community suggest that a prevalence exceeding worldwide prevalence by a factor of 100. See MJDFoundation Inc, Submission Number 279 to Productivity Commission Inquiry on Disability Care and Support (2009).66For example the disability caused by in utero exposure to Thalidomide, post polio syndrome, side effects of canceror cancer treatment, motor vehicle accidents, workplace injury etc.67Sarah 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 2013.68Sarah 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 2013.69PwC Australia, Disability expectations - Investing in a better life, a stronger Australia (2011), 3.
  10. 10. © Naomi AndersonPage 10 of 14Aside from the commonly held belief that Medicare and the social security system are sufficient disabilitysupport,70there is an ongoing discourse about welfare dependence, with claims that the Disability SupportPension (DSP) is paid to large numbers of people defrauding the system.713 The miracle of medicineMedicine 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 andanxiety.Into this space, disability stands alone as a failure of nature, science and policy. Our discomfort with aninability to resolve the “ugliness” of “deformity”72is matched by our difficulty comprehending the varietiesof neurological, intellectual and social impairment,73the impact both of the impairments themselves, and thecontribution of the social response to them, whether posited as a health problem, a lack of ability, or differenttype of function.744 Changing familiesIn an era of apologies for state removal of children,75and acknowledgement that the will of parents wasoverborne, the separation of disabled children is a complex phenomenon whereby often both parents and thestate accepted the need for familial separation.76While removal of enabled children was based on presumptions about parental capacity;77the removal ofdisabled children were removed to spare parents the burden of their care.7870Melinda Jones and Lee Ann Basser Marks (eds), Explorations on Law and Disability in Australia (2000), 1.71Jessica 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 October2012, Jessica Brown, The welfare revolution that has passed disability pensioners by (2011) Online Opinion, 12October 2011 <http://www.onlineopinion.com.au/view.asp?article=12727> at 12 October 2011, Andrew Bolt, Notquite such a helpless victim, Herald Sun (online), 23 January 2013 2013, , Rachel Siewert, Time for a little sense in thewelfare debate (2011) 25 May 2011 <http://www.abc.net.au/unleashed/2729822.html> at 25 May 2011, PressCouncil Adjudication No. 1511: Naomi Anderson/The Australian, 23 September 2011, Naomi Anderson, Separatingfact 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 2011.72Steven D Edwards, Definitions of Disability in Kristjana Kristiansen, Simo Vahmas and Tom Shakespeare (eds),Arguing about Disablity: philisophical perspectives (2009) vol 30-41, 39.73See discussion re ADHD and Aspergers in Simo Vehmas and Pekka Makela, The ontology of disability andimpairment in Kristjana Kristiansen, Simo Vahmas and Tom Shakespeare (eds), Arguing about disabiliy: philosphicalperspectives (2009) 42, 49. Complicating this picture are recent discoveries about neuroplasticity, which are beyondthe scope of this paper.74Jerome E Bickenbach, Disability, non-talent and distributive justice in Simo Vahmas and Tom Shakespeare KristjanaKristiansen (ed), Arguing about Disability: philosphical perspectives (2010) 105, 112-114.75Prime Minister Kevin Rudd on 13 February 2008, re the Stolen Generation and Prime Minister Julia Gillard on 13March 2013, re Forced Adoptions.76Disability Council of NSW, Submission 77 to the Senate Standing Committee on Community Affairs: Inquiry intoChildren in Institutional Care (2005)
  11. 11. © Naomi AndersonPage 11 of 14The closure of institutions created new problems, with a shift of responsibility from institutions to anunprepared and under resourced community; 79new issues began to appear, including the housing of youngpeople in aged care facilities.80There is a distinct schism between the generations in this respect, as significant shifts in policy oninstitutionalisation were not necessarily congruent with other shifts taking place in the community. As notedby Manne:In history, timing can be everything. Deinstitutionalisation occurred at the same historical moment asthe great leap forward into the free market neo-liberal age, and the feminist revolution. …We arecurrently one of the lowest taxing nations in the OECD, which means there is less money to allocateto essential social services for people with a disability and their families. … [T]they shut downinstitutions … but failed to institute new programs to replace them. Former live-in patients oftenended up homeless or in prison. … The old era had very clear assumptions about care; a marriedman worked and a housewife stayed at home.… Yet here, too, a revolution was underway. Womenwere now at work in ever increasing numbers. These family caregivers needed new labour marketregulations, such as carer’s leave, to help them manage work and care. Yet, in the new economicorder, such entitlements were not forthcoming.81Error! Reference source not found. Error! Reference source not found. describes, in broad strokes, threedifferent 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 frominstitutions82to families83 An increased dependence on dual incomes for many families;84 An increased casualisation of the workforce and reliance on contract labour;8577Real, or otherwise, bearing in mind the significant number of children removed from the care of indigenous parents,single mothers, and other forced separations.78Disability Council of NSW, Submission 77 to the Senate Standing Committee on Community Affairs: Inquiry intoChildren in Institutional Care (2005).79Ibid 13.80Sarah Parker and Karen R Fisher, Facilitators and Barriers in Australian Disability Housing Support Policies: Using aHuman Rights Framework (2012) 30(3/4) Disability Studies Quarterly, <http://dsq-sds.org/article/view/1283/1310>at 25 February 2013.81Anne 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 12May 2012.82Mainly run by charities, with some funding by government.83Without a corresponding increase in support to the families, or reduction in support for the charitable orgovernmental 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 problematicimplicit ideology (2009) 34(4) Australasian Journal of Early Childhood 14.84Australian Bureau of Statistics, 4442.0 - Family Characteristics, Australia, 2009-10 (2011).85Anti-Discrimination Board NSW, Demographic shifts highlight carers responsibilities, Equal Time (2002).
  12. 12. © Naomi AndersonPage 12 of 14 An ageing population and consequently both an increase in age related disability, and decrease inratio of available others to provide care;86and Reduction of the care availability of informal carers as family sizes continue to reduce and singleparent families are more common,87and increased workforce participation by women.88C The journey to an NDISIn March 2013 Parliament unanimously passed the National Disability Insurance Act 2013 (Cth) to fundservices 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 corevalues: for the left, additional services and payments, for the right, a focus on productivity and individualchoice. Criticisms were equally predictable, for the left, wasted public funding with no improvement inoutcome, 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 externalpressures: a global financial crisis, an ageing population, reductions in available workforce and limitedcapacity for unpaid care, ever increasing welfare costs of unemployed people with disabilities, absence of acohesive and functional national strategy, and a plethora of state and commonwealth agreements. TheCommonwealth-State funding agreement was unsigned, and funding was set to cease within months of theelection. A review of the election promises of the ALP in 200789bears no relationship to the currentstrategy, 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 ushave never once wondered about and always presumed to be available; Australians … whose voicesare rarely heard by the broader many who live in their midst and otherwise occupy this nation.… Ididn’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 whypeople with disability are often defined by their disability, and not by their unique humanness. Why86PwC Australia, Disability expectations - Investing in a better life, a stronger Australia (2011), 33.87Ibid, 40.88Anti-Discrimination Board NSW, above n 36.89A high level copy of these is available Error! Reference source not found. - Error! Reference source not found..
  13. 13. © Naomi AndersonPage 13 of 14a whole and natural life is withheld from them, or seems impossibly hard to reach. It is why they arestill not fully participating in what Australia has to offer.90Less than three weeks after Shorten’s speech to the Press Club, a paper91that would change the entiredisability landscape was presented to the 2020 Summit. Listed under “Big Ideas’ on p 173 of the final reportis this line: “Establish a National Disability Insurance Scheme”.92Following this summit there were NDIS recommendations from the Pension Review Report93two DisabilityInvestment Group reports in 2009,94the Shut Out Report,95(Shut Out)andthe Who Cares? Report.96TheProductivity 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 allAustralians, but focuses on individual productivity and is targeted in a number of key areas. It has beeneffectively designed by the economically focussed Productivity Commission and is endorsed by the keydisability advisory bodies, as well as the Council of Australian Governments (COAG). It has been reviewedby the Senate Committee for Community Affairs (Senate Committee), and along with over 1500 publicsubmissions, and public hearings in eleven locations, there has not been a single dissenter.97Now 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 thatgovernments, stakeholders or families are doing anything wrong. It is just that this is a big thing andwe all need to be aware of that, and to give the NDIS the time to mature and grow into the systemthat we all want it to be.981 The social context of the NDISWhile 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 toDisabilityCare.90Bill Shorten, Right to an Ordinary Life – National Press Club (Paper presented at the National Press Club,Melbourne, 2009)91Bonyhady BP, Sykes H. Disability reform: from crisis welfare to a planned insurance model. April 2008, unsighted.92Department of the Prime Minister and Cabinet, Australia 2020: Summit Final Report (2008).93Dr Jeff Harmer and Housing Department of Families, Community Services and Indigenous Affairs, Pension ReviewReport (2009), xix.94Disability Investment Group, The Way Forward: A New Disability Policy Framework for Australia (2009) andPriceWaterhouseCoopers’ Disability Investment Group, National Disability Insurance Scheme, Final Report, (2009).95National People with Disabilities and Carers Council, Shut out : the experience of people with disabilities and theirfamilies in Australia : National Disability Strategy consultation report (2009), 3.96Standing Committee on Family, Community, Housing and Youth, Parliament of Australia, Who Cares ...? Report onthe inquiry into better support for carers (2009), 147.97Standing Committee on Community Affairs, Parliament of Australia, National Disability Insurance Scheme Bill 2012(2013), 1, 14.98Mr Evans, Department of Premier and Cabinet, Tasmania, Proof Committee Hansard, 22 February 2013, p. 8, quotedin Standing Committee on Community Affairs, Parliament of Australia, above n 98, 16.
  14. 14. © Naomi AndersonPage 14 of 14As described by Craig Wallace “[w]ithin the click of a mouse, social media erupted with discussion … witha mixed but overwhelmingly negative response to the new name.”99Wallace argues that “the NDIS hasalways been about much more than money - its a new system - and for once, the choice of name really isimportant and totemic.”100The discomfort is similar, but different, through the lens of different commentators: “a moniker that putspeople 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 thechoice and control over our lives that the NDIS is intended to give us,”102through “may not have beenintentionally offensive, when a group of people have suffered so much the least we can do is give them theright to choose the way we talk about these topics”103to “don’t really care about the name and despite whatthe sector thinks the non-disability sector community will at least get some basic understanding that it isabout supporting people with disability.”104It is clear that the NDIS carries with it the baggage of history, expectation, frustration, and momentum forchange. The effectiveness of the legislation is considered later in this report, but first we turn to the signsand symptoms of disablement at law.99Craig Wallace, DisabilityCare: Whats in a name? (2013) RampUp, 21 March 2013<http://www.abc.net.au/rampup/articles/2013/03/21/3720482.htm> at 21 March 2013100Ibid.101Iid.102Stella 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 2013.103Lauren 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 2013.104Kelly 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.

×