PUBLIC POLICY BENCHMARKS FOR EQUALITY OF OPPORTUNITY FOR PEOPLE WITH DISABILITIES By JONATHAN MOSEN B.A. A thesis submitted in partial fulfillment of the requirements for the degree of Master of Public Policy Victoria University of Wellington 1999 TABLE OF CONTENTS ABSTRACT 3 ACKNOWLEDGEMENTS 4 Chapter One: INTRODUCTION 5 Outline 6 Main Principles 8 Chapter Two: WHO ARE PEOPLE WITH DISABILITIES? 9 Disability, Impairment and Handicap 9 Legislative Definitions 10 Subgroups in the Disability sector 10 Information from the Disability Surveys 11 Participation in Policy Formulation 12 Conclusion 13 Chapter Three: THE EVOLUTION OF PUBLIC POLICY ON DISABILITY 14 Introduction 14 Beginnings 14 The Early Twentieth Century 18 The Construction of Social Security 20 Increasing Government Involvement 21 Consumers Begin to Organise 23 Consolidation 26 The 1970's 27 The 1980's 28 Rights Come to the Fore 29 Conclusion 32 Chapter Four: THE "NEW DEAL" - THE DISABILITY SUPPORT SERVICES FRAMEWORK 34 Introduction 34 Genesis of the New Deal 35 Operational Components of the New Deal 37 Whose Needs are they Anyway? 40 Musical Chairs 41 Changing Relationships 42 Contracting Concerns 44 Adjustments 46 Conclusion 48 Chapter Five: GOVERNMENT POLICIES ON DISABILITY OUTSIDE THE DSS FRAMEWORK 49 Introduction 49 Legislation 49 Vocational Programmes 54 Government Policy 54 Local Government 56 International Law 56 Conclusion 60 Chapter Six: USING BENCHMARKS 62 Introduction 62 What are Benchmarks? 63 Foundations of the Benchmarks 64 Obligations of a Just Society 66 Conclusion 70 Chapter Seven: THE BENCHMARKS 71 Introduction 71 List of Benchmarks and measurement Criteria 72 Explanation of the Benchmarks 74 Best practice 80 Monitoring and Evaluation 82 Conclusion 82 Chapter Eight: PUTTING THE BENCHMARKS TO PRACTICAL USE 84 Introduction 84 Changes to the DSS Framework 84 Will Government do Everything? 89 Funding For Assistive Technology 92 Work Capacity Assessment 96 Conclusion 99 Chapter Nine: CONCLUSION 100 Final Comments 102 BIBLIOGRAPHY 102 ABSTRACT Societal attitudes towards people with disabilities have altered radically over the last 125 years. The state's view of people with disabilities and its obligations towards them have sometimes led, but have mostly been led by, these societal changes. Public policy on disability has evolved in a haphazard way, resulting in fragmentation of disability support services across government departments, and people with similar need being treated differently based on disability type or cause of disability. The legacy of dependence of people with disabilities on charitable giving for essential services, and the traditional medically-centred approach to disability have meant that while legislation has been passed theoretically according people with disabilities equal status in society, much remains to be done to turn these laudable goals into reality. Current policies in the main do not take account of the contention of advocates in the disability sector that it is society's barriers, rather than the impairment itself, which cause an impairment to be disabling. Instead, current policy focuses largely on the impact of the impairment on each individual with a disability, rather than what society must do to reduce the impact of that impairment. Because this basic premise of the modern disability rights movement is not widely understood or accepted throughout New Zealand's public sector, disability is seen predominantly as the responsibility of a select number of government departments, rather than an issue which requires consideration in every aspect of public policy. This thesis proposes a means to address these deficiencies in public policy on people with disabilities. A set of benchmarks for equality of opportunity is suggested, based on principles of justice, best practice internationally, national and international law, and consultation with advocates in the disability sector. The benchmarks can serve as a thermometer for assessing disability policy as a whole. They can also be used to formulate key evaluative questions to ask of any proposed change. Whichever policy can be said to satisfy the most benchmarks most comprehensively is the one that will best advance equality of opportunity. A practical application of these benchmarks in some areas of policy debate within the disability sector is offered in order to demonstrate the usefulness of the tool to everyday public policy situations. ACKNOWLEDGEMENTS I wish to extend grateful thanks to my employer, the Royal New Zealand Foundation for the Blind, for giving me the time and financial resources to undertake the fascinating and demanding MPP course. In particular, thanks to Geoff Gibbs, the Foundation's former Chief Executive, for his support and encouragement. Blindness obviously requires the use of alternative techniques to deal with the vast quantity of material that must be gathered and read for a project such as this. My sincere thanks to Kirsten Harrison, Christine Martin, Nicola Gray and Rebecca Thomson for scanning and reading hundreds of pages of material. My special thanks to Kate Sinclair for her outstanding work as my researcher, and to the Victoria University of Wellington for understanding my need for Kate's assistance and providing the funding to employ her. Thanks to Stephen Bennett, Pam Crothall, Sue Gates, Paul Gibson, Mike Gillooly, Tony Haas, Owen Hughes, Don McKenzie, Ben O'Meara, Jeff Sanders, Carol Searl, Maaka Tibble, Megan Wishart, and others who have critiqued and provided inspiration for this work. Amanda Wolf and Bob Stephens, as my supervisors, read through the drafts and offered many useful suggestions. Thanks to them both for their patience and assistance. There are many great blind thinkers who have been a source of inspiration, both in terms of this specific work and in encouraging me to set ambitious goals. In particular, I salute Cyril White, Terry Small, Mary Schnackenberg, Clive Lansink and Kenneth Jernigan for their sacrifices, their trail blazing, and their determination in earlier times of greater adversity. I convey my deep love and thanks to my children Heidi and Richard who have had to put up with their Daddy being locked away in his study for long periods being incommunicative. Happily, one day, they will understand what a thesis is. Sadly, one day they will also know what discrimination is. Both realisations will perhaps help them to understand why this project was necessary and why I had to refuse so many requests for piggybacks and games of ball. Finally, a special thanks to my best friend, my strongest supporter, and my most honest critic, my wife Amanda. Surprisingly to many, Amanda is the radical in our family, constantly challenging social attitudes towards blindness. She is also the most caring, supportive, selfless, wonderful person. I dedicate this work to her. If all non-disabled people shared Amanda's attitudes towards people with disabilities, there would have been no need to write this thesis. Jonathan Mosen February 1999. ENABLING GOVERNMENT - Public Policy Benchmarks for Equality of Opportunity for People with Disabilities - Chapter One INTRODUCTION Attitudes towards, and expectations of people with disabilities have changed markedly over the last 100 years. Many factors have contributed to this attitudinal change. Some are societal, some are medical, and others are technological. Some activists within the disability sector view their history in similar terms to the way racial minorities view theirs. Deaf people speak with passion about being deprived of their language, people with intellectual disabilities and their advocates talk of the Eugenics movement seeking to exterminate them as a class, the blind and people with psychiatric disabilities talk of their enslavement in institutions. As was the case with racial minorities, a few leaders emerged in the disability sector who challenged established practices and fought for change. Increasingly, people with disabilities began to be noticed, and be listened to, by policy makers. With the creation of consumer organisations, people with disabilities very slowly began to change the practice of being the group about which decisions were made, and instead began to participate in the setting of the policy agenda. Yet there has been an interesting, at times contradictory, mix of philosophical change on the part of New Zealand governments in general, which has affected people with disabilities. On the one hand, the rights-based victories of the last quarter century have made a series of important statements, at least on paper, about the equality in law of people with disabilities. The state, through such rights-based legislation, has made many commitments to protecting that equality. Yet at the same time, people with disabilities have been affected by successive governments' minimalist, market-oriented tendencies. Rather than considering whether the state has certain core functions towards people with disabilities that are non-negotiable in a just society, government policy tends to place provisos on disability policy associated with current budgetary allocations. Yet there has been little investigation as to whether such allocations are sufficient to realise the more enlightened views regarding the rights and potential of people with disabilities which now prevail. Many essential disability-related services are still funded from voluntary giving. As discussed in Chapter 6, services funded from charitable giving are discretionary, and can be expected to elicit gratitude from the recipients of such charity. Thus we see a conflict between a heightened awareness of rights, and a perpetuation of discretionary charity being used to fund essential disability-related services. Further, while the Disability Support Services Section of the Health Funding Authority makes decisions on the services people require as a result of their disability, there is no Te Puni Kokiri equivalent for disability. In other words, no government body monitors or advises all government departments with respect to their obligations to people with disabilities. Indeed, no government-wide position exists on exactly what those obligations are. Consultation of course occurs, but this is quite different from the minority group about which policies are being made actually driving the policy formulation process. There is therefore a need for people with disabilities themselves to investigate what they require in order to be full participants in society without being constrained by any aspect of current policy. Outline This thesis explores the evolution of disability policy in New Zealand, demonstrating changes in perceptions of obligations, expectations and underlying philosophy towards public policy on disability. It then uses philosophy, international obligations, and the opinions of people with disabilities to examine what role the state ought to play in disability policy. New Zealand's international obligations commit the government of the day to equalising opportunity for people with disabilities. Although there are very clear instructions as to operational matters every country must address, the thesis attempts to deal with the question, "How do we know whether a given policy will increase or decrease equality of opportunity for people with disabilities?" To answer this question, this thesis proposes the use of a series of benchmarks, or indicators, against which all public policy, not just disability policy, should be measured. A set of benchmarks is suggested, based on consultation with a range of people from the disability sector, best practice internationally, and the writer's experience as an advocate in the disability sector. A practical application of the benchmarks is also demonstrated. Chapter 2 defines people with disabilities, and terms used frequently throughout. Chapter 3 looks at the evolution of public policy on disability. It demonstrates the lack of consistency resulting in different disabilities with very different but equal needs being treated with different levels of favour. It also shows an interesting mix of pity, contempt, sympathy and sometimes disinterest towards people with disabilities on the part of policy makers. We also see how the cause of one's disability came to influence the degree of government assistance. Eventually however, government made some important statements in law about the equal status of people with disabilities in society, although as later chapters show, these have not necessarily been supported by governmental action. This section is not intended to be an exhaustive chronology of events. Rather, it seeks to highlight a series of actions taken by the state, which serve as examples of the fickle nature of policy formulation across the sector. Chapters 4 and 5 provide an outline of disability policy in New Zealand as it is today and the underlying rationale behind it. The "New Deal" for people with disabilities, more formally known as the "Disability Support Services Framework", warrants a separate chapter in itself. It represents the first attempt by a government in New Zealand to establish a coherent structure and set of principles for disability support services. Yet there is still fragmentation throughout the public sector on matters pertaining to disability policy. There is also a policy of capping budgets in this area, even when doing so may deny individuals access to goods or services other New Zealanders consider fundamental. No structure exists to facilitate co-ordination, nor is there a common vision for disability policy on which policy makers can base their decisions. Focus on environmental barriers is minimal. Furthermore, laudable goals and worthy legislation are not supported by any measurements by which the progress towards those goals, or lack thereof, can be ascertained. Part Three of the thesis, in Chapters 6, 7 and 8 makes a case for defining and applying a set of benchmarks for equality of opportunity of people with disabilities. A draft set of benchmarks is suggested. Finally, a number of policies relating to people with disabilities are tested against these benchmarks to see whether society and public policy would be different if the benchmarks were used as a public policy tool in New Zealand. Main Principles In line with the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) definitions discussed in Chapter 2, this work is based on the precept that a person becomes handicapped not when they acquire a medical "abnormality or loss of bodily function", but when their preferences change to include an option which present societal constructs prevent them from exercising. government has a responsibility to remove these societal barriers in fulfilment of the moral and legal obligations it has towards all its citizens. The work takes account of three key principles that have guided recent international legislation and practice: * The recognition that disability is a social rather than a medical issue; * The adoption of a civil rights perspective; and * The recognition of equality as a key principle of the human rights approach. These principles are embodied in the United Nations' Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, which were adopted in 1993 in consultation with organisations representing people with disabilities. New Zealand later became a signatory to these Rules. While not legally binding on UN member states, they reflect current thinking about disability policy and are intended to set the basic international legal standard for programmes, laws and policy on disability in the coming years. They are aimed at ensuring that all people with disabilities can exercise the same rights and obligations as other people. To do so, they set out a list of preconditions for equal participation, including awareness raising, support services, and specific targets for equal participation, including access to the physical environment, access to information and communications, public transport, education, employment, income maintenance, family life, culture, recreation and sports and religion. They also set out specific implementation measures and monitoring mechanisms.1 There are a number of international and domestic documents that define what we mean by disability, discussed in the next chapter. Chapter Two WHO ARE PEOPLE WITH DISABILITIES? Disability, Impairment and Handicap In 1980, the World Health Organisation (WHO) issued the International Classification of Impairments, Disabilities, and Handicaps (ICIDH). It was an important statement, because it reflected a shift away from the notion that it is the person's impairment which disables them, and instead started to reflect the views of people with disabilities: that society disables people, and that changes can be made to remedy or at least largely alleviate this. An impairment, according to this definition, is: Any loss or abnormality of a psychological, or anatomical structure or function. Impairments therefore are abnormalities at the level of the organ. WHO defines a disability as: Any restriction or inability (resulting from an impairment) to perform an activity in the manner or within the range considered normal for a human being. This describes a functional limitation or activity restriction caused by an impairment. Disabilities are descriptions of abnormalities in function at the level of the person. Finally, WHO defines a handicap as: Any disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal ... for that individual. The classification of handicap is a classification of circumstances that place individuals "at a disadvantage relative to their peers when viewed from the norms of society". The classification of handicap deals with the relationship that evolves between society, culture and people who have impairments or disabilities, as reflected in people's life roles.2 While revolutionary for its time, in recent years this definition has been felt by some people with disabilities to be in need of revision, because it is felt that there is still too much emphasis on medical rather than environmental factors. It is expected that ICIDH II will be released in 1999. Legislative Definitions New Zealand has many definitions of disability used by various agencies within the public sector. These definitions include those appearing, or referred to, in the Health and Disability Services Act 1993, the Disabled Persons Community Welfare Act 1975, the Accident Rehabilitation and Compensation Corporation (Complex Personal Injury) Regulations 1994, the Human Rights Act 1993, the Privacy Act 1993 and the Health Information Privacy Code 1994. Definitions in legislation governing service provision to people with disabilities tend to be narrower and focus more on either medical definitions or on a connection with needs assessment. Rights-based legislation tends to use wider definitions. For instance, the Ministry of Health defines a person with a disability as: A person who has been identified as having a physical, psychiatric, intellectual, sensory or age-related disability (or a combination of these) which is likely to continue for a minimum of six months and result in a reduction of independent function to the extent that ongoing support is required. The broadest and most frequently used legislative definition of disability in New Zealand is contained in the Human Rights Act 1993. It defines disability as: (I) Physical disability or impairment: (ii) Physical illness: (iii) Psychiatric illness: (iv) Intellectual or psychological disability or impairment: (v) Any other loss or abnormality of psychological, physiological, or anatomical structure or function: (vi) Reliance on a guide dog, wheelchair, or other remedial means: (vii) The presence in the body of organisms capable of causing illness. Subgroups in the Disability sector While the term disability is used throughout this work, it is important to emphasise the diversity that exists within the disability sector. Each subgroup within the sector has its own unique needs, challenges, history, and in some cases culture. When categorisation occurs, government tends to divide people with disabilities into 5 subgroups. Physical disability is defined as reduced physical capacity (for example, through loss or impaired use of limbs). Sensory disability covers impairment of the senses (mostly sight and hearing). Psychiatric disability means disability arising from continuous or intermittent disorders related to thinking, feeling, volition or behaviour (for example, schizophrenia, severe chronic depression or long-term addiction to alcohol or drugs). Intellectual disability is defined as permanently impaired learning ability (usually from birth) which prevents or inhibits people from developing the range of physical and social skills usually found in a person of that age. Finally, age-related disability is physical, sensory, intellectual or psychiatric conditions related to the onset of old age. This includes conditions which can affect younger people, such as Alzheimer's disease or stroke, but which are most often found amongst older people.3 Some people with disabilities consider even these definitions too broad. For example, the disability-related needs of someone with a hearing impairment are quite different from the disability-related needs of someone with a vision impairment. However, government research, such as the Disability Surveys, places both groups into the single category of sensory disability. Information from the Disability Surveys Data from the 1996/97 Disability Surveys indicate that there are 702,000 people with disabilities in New Zealand, twenty percent of the population. Their number will steadily increase, since New Zealand's population as a whole is ageing, and disability is more prominent in the elderly.4 Further attitudinal change and societal modification is therefore necessary if a sizeable number of New Zealand's population is to be able to enjoy fulfilment of their right to equality of opportunity in the near future. Fifty two percent of people with disabilities are female. Among children, the prevalence of congenital conditions affecting males means that males are over-represented (sixty one percent) among those under fifteen. Maori are under-represented among people with disabilities as a whole, (twelve percent versus fourteen percent for the population at large). One in five adults with disabilities who live in households live on their own. The Surveys do not provide a blanket unemployment figure for all people with disabilities. Instead, they use three categories of disability. Unemployment is forty two percent among people with level one disability (people who do not require assistance). Five percent of people with level one disability are actively seeking work. Among those with level two disability, who require assistance at least once a week, the unemployment rate is forty eight percent with six percent actively seeking work. People in the level 3 category require daily assistance. Among this group, the unemployment rate is sixty five percent and four percent are actively seeking work. The unemployment rate among these groups is much higher than that of any other minority. Participation in Policy Formulation People with disabilities now seek to influence the policy formulation process through advocacy organisations. Some of these are comprised entirely of a specific subgroup of consumers within the disability sector, such as the nearly 2000 strong Association of Blind Citizens of New Zealand. Others are a mixture of disability types, providers and caregivers, such as the Assembly of People with Disabilities. Provider agencies, such as the Royal New Zealand Foundation for the Blind, IHC (the primary provider of services to people with intellectual disabilities), and CCS (a major provider of services to people with physical disabilities) also undertake issues advocacy. Some consumers with disabilities, who believe that consumer organisations, not service providers, ought to set and pursue an advocacy agenda, see the participation of such agencies in advocacy as controversial. Broadly speaking however, the objectives of all of these organisations are fairly similar, namely to advocate for the participation of people with disabilities in society through improving understanding of needs and capabilities, and advocating for greater resources. However, there appears to be less direct participation in policy formulation on the part of people with disabilities than for any other recognised disadvantaged group in society. There are no members of Parliament with a serious disability. The State Services Commission was able to produce data indicating that the percentage of people with disabilities working in the state sector as a whole is not only well below the percentage of people with disabilities in the New Zealand population, but it declined sharply over the period 1993 to 1997. In 1993, the Commission records that 15.7% of state sector workers had a disability. This reached a low of 11.6% in 1996, rising slightly to 11.8% in 1997. During the same period, other disadvantaged groups' participation in the state sector increased or remained constant.5 By telephoning the relevant ministries, it was possible to obtain data on the impressive percentage of women in the Ministry of Women's Affairs, Maori in Te Puni Kokiri, and people from the Pacific islands in the Ministry of Pacific Island Affairs. However the Disability Support Services Section of the Ministry of Health could not readily provide the number of people with disabilities working in this section. This, coupled with the alarming drop in participation on the part of people with disabilities in the public sector, suggests that greater efforts must be made to ensure that people with disabilities are able to be the ones implementing and devising change rather than submitting on or responding to proposals. Conclusion It is often thought that disability is something with which only a minority of people have contact. Yet, as the Irish Commission on the Status of People with Disabilities point out, "There are few families who have not been, are not, or will not be, affected by disability to some extent or other at some time in their lives."6 Speaking in an American context, Irving Zola said, Similarly deceptive is the now-popular figure of `43 million people with a disability'... for it implies that there are over 200 million Americans without a disability. We in the independent living/disability rights movement have coined the term TABS-Temporarily Able Bodied. But the metaphor of being but a banana-peel slip away from disability is inappropriate. The issue of disability for individuals...is not whether but when, not so much which one but how many and in what combination.7 People with disabilities are a significant minority whose numbers will continue to increase in the foreseeable future. They are over-represented in negative statistics measuring socio-economic status. Increasing confidence and changing aspirations within this group means that they are demanding greater recognition, resulting in fuller participation in society. The need to address issues surrounding equality of opportunity is therefore pressing. Chapter Three THE EVOLUTION OF PUBLIC POLICY ON DISABILITY Introduction Beliefs about the inferiority of people with disabilities have offered justification for their subordination and lack of equality of opportunity in the same way that erroneous but widely held beliefs resulted in the oppression of women and Maori. This chapter outlines in brief a story not as widely told as that of the other disadvantaged groups. It is a story of state-sanctioned bigotry, well-meaning philanthropy and over-bearing paternalism being challenged by self-determination and recognition that people with disabilities are no less entitled to fundamental human rights than anyone else. New Zealand's public policy on disability issues has evolved in response to changing societal attitudes, and pressure from different parts of the disability sector. It is difficult to find consistency, equity or any coherent philosophy in this evolutionary process until a series of rights-based measures began to be implemented over the last 25 years. Many disability support services have been provided by the voluntary sector, with the aid of significant government contributions. Yet similar services were funded very differently based only on the type of disability for which they were intended. State financial assistance to cover the extra costs of disability varies based on disability type and on the cause of disability. Thus equality of opportunity has not only been difficult for people with disabilities to attain, but significant inequality has existed historically within the sector itself. While attempts have been made in recent years to offer a "new deal" for people with disabilities, considerable inconsistency and inequity still remain. Beginnings As a young colony preoccupied with land wars and economic development, the state paid scant attention to the needs of people with disabilities until the 1870's. When disability was considered at all prior to this period, distinction generally was not made between illness and disability. This is only partly due to the social attitudes of the time. The state of medical science was also a significant factor. As Tennant and Moore put it, When exhaustion, suffering, pain and low life expectancy were so much part of ordinary life, disability was less distinguishable than it has since become. So too were the boundaries between disability and simple (but recurring) `ill health'. The balance between white collar and manual work, levels of education, mobility and affluence across the population as a whole, and developments in medical science: all these have influenced the definitions of 'disability', and 'normality', or disability and health.8 New Zealand's early governors wanted to project an image of a vigorous, thriving colony. The presence of too many people with "infirmities" tarnished that image. What's more, it was felt that people with illnesses or disabilities could not be productive, would be dependent on others, and would be a general drain on the economy. Action was taken to minimise the "risk" of an increase in the population of ill and disabled people in New Zealand through restrictive immigration laws. In one of the first pieces of New Zealand legislation to cover people with disabilities, the 1882 Imbecile Passengers' Act required a bond from the person responsible for a ship which discharged any person 'lunatic, idiotic, deaf, dumb, blind or infirm' who might become a charge on public or charitable institutions. The 1899 Immigration Restriction Act, mainly aimed at excluding Chinese, also included among prohibited immigrants 'any idiot or insane person', as well as those suffering from contagious diseases.9 In the 1870's however, word was spreading of programmes in other countries that sought to educate, rehabilitate, and/or care for people with disabilities. The language of the day was very different, and the term "rehabilitation" was not in use at this time. It was more common to hear talk of the "amelioration of conditions", language which can still be found on the statute books today. Section 4 (1) (a) of the Royal New Zealand Foundation for the Blind Act states that the Foundation's purposes include, To provide for the care, relief, education, and training of blind persons, the amelioration of their condition, and the maintenance and promotion of their general welfare. Interest slowly began to increase in providing education and care for people with disabilities, with some disabilities being given more attention than others. In 1873, a remit from Hon Colonel Brett was put to the Legislative Council, asking for the government to undertake a survey of the deaf and blind to establish their number and condition, and to provide assistance for those in need. In 1874, a question on disability was included in the Census, although it is unclear whether this is a direct result of Colonel Brett's remit. The question sought data on those who were "deaf and dumb, blind, lunatics, idiots, epileptics, paralysed, and crippled and deformed".10 Such a question remained in the Census until 1916, after which time disability was not surveyed in the Census until 1996. The question was not delivering accurate data. This was partly due to issues of self-identification of disability which remain to this day, but also because those who might respond affirmatively were aware that the question was not being asked with the aim of improving or increasing service provision. The numbers were used in the main to continue debate about eugenics, and the perception of a deterioration in the quality of the "British Race".11 The same year that the census question was asked for the first time, the Auckland Provincial Council set aside a sum of money for the establishment of a school for the education of blind children. At the time however, it was considered that there was insufficient demand for a school dedicated in its entirety to serving the needs of the blind. While there was little support for the Provincial Council's idea, the Legislative Council in 1874 called for the erection of a central asylum for the blind, deaf and dumb.12 Nevertheless, it was some years before any of these groups were to be the beneficiaries of dedicated efforts towards their education and rehabilitation. In 1877, the government passed the Education Act, making free, compulsory and secular education available to all children under the age of 13. All children that is, apart from those with "permanent infirmity" who were expressly exempted by a clause in the Act. Education for the deaf received government assistance thanks to intensive and effective lobbying in 1878 by William Rolleston, the then former Canterbury Regional Superintendent. The government of the day expressed a strong preference for the voluntary sector taking responsibility for such projects, but they promised government subsidies for any new educational establishment for the deaf. However, Rolleston advanced the compelling case that if the state was providing free, compulsory, secular education, then there was no moral justification for the state not taking full charge of providing it to the deaf, even though their number was small.13 Just prior to a prolonged economic depression which lasted some 17 years, the government provided funding for the establishment of the Sumner Institution for the Deaf and Dumb in Christchurch in 1879. Rolleston had been responsible for setting an important public policy precedent, but the onset of the depression meant that new social initiatives were not accorded a high priority. The need for a campaign to establish the Sumner school demonstrates that in no way were people with disabilities considered by government to warrant the same attention as everyone else. Preferably, they should be the responsibility of charity. While not challenging the prevailing view that New Zealand's young blind population was too small to warrant a school for the blind, the government began to send blind children to schools for the blind in Australia in 1886. By 1887, seven children were studying in Sydney and Melbourne, with funding coming from the Charitable Aid Vote.14 Despite a steady increase in public money being spent on the education of blind children in Australia, it was not the government who established the Jubilee Institute for the Blind in 1890. This was left up to volunteers in Auckland, although as we shall see, the organisation now known as the Royal New Zealand Foundation for the Blind and later the people that organisation serves, quickly developed a special relationship with government. The Institute's first employee, a blind school-teacher named John Tighe, had his salary funded through a grant from the Hospital and Charitable Aid Board. These government-run boards were a source of considerable assistance to people with disabilities. While there was extensive help available to some people with disabilities who, in the opinion of churches and charities were deserving of such help, the state was not an idle bystander during this period. The Hospital and Charitable Aid Boards carried out a range of functions themselves, but also funded voluntary organisations where they considered this appropriate. Such "separate institutions" were provided for under legislation, with specific requirements needing to be met by each institution before it could qualify for funding. Once an organisation had been successful in being included in the Hospitals and Charitable Institutions Act, subsidies were provided with little accountability sought. Money for the Board's funding and service provision came from taxes raised at a local and national level. The range of services both funded and provided included income maintenance, treatment and care. Hospitals, however, were also changing during this time. They were increasingly becoming places of cure as medical science began to make more cures possible. This led to hospitals wanting to turn away those who required long-term care, and not cure, including the terminally ill and many people with disabilities. With this trend came a ground swell for the establishment of homes for "incurables". The public sector fulfilled this role to a certain extent, but a number of church organisations also provided such facilities. These homes not only included people with terminal illnesses, but a number of people with disabilities as well, including hydrocephalus, spina bifida, cerebral palsy, blindness and Down syndrome.15 Additionally, poor diagnoses meant that many people with disabilities who were not psychiatrically ill ended up in what were then called "lunatic asylums". With the election of the Liberal Government in 1890, the tax base was widened to pay off debt, and the country gradually came out of depression. At the same time, social issues regained their prominence, and the first welfare legislation was introduced. Given that disability often occurs late in life, some people with disabilities benefited from the Old Aged Pensions Act of 1898. The Early Twentieth Century Attitudes driving public policy towards people with disabilities were very mixed as the twentieth century began. The ability for certain people with disabilities to be educated, and indeed their right to have an education, was recognised in legislation. The School Attendance Act of 1901 required the parents of deaf and blind children to ensure that their children received an "efficient and suitable education". If parents failed in this responsibility, the Act gave the Minister of Education the power to place their child in a suitable institution. In 1907, the provisions of the Act were extended to "defective and epileptic" children. The government acknowledged a responsibility to ensure such institutions were funded adequately. From its inception, the Jubilee Institute for the Blind had operated with the assistance of a combination of charitable donations, funding from the Education Department, and the local Hospital and Charitable Aid Board. A per capita subsidy was given to the Institute at the direction of the Minister of Education for each child being educated there. By 1906, the relationship between the Institute and the government was such that the Institute was considered deserving of its own act of Parliament. Four trustees of the Institute were appointed by the government under this act, a provision that still exists today. In exchange for such a close, and in those days extremely prestigious link with government, the Institute was obliged to admit any child between the ages of seven and sixteen years that the Minister of Education considered was in need of the Institute's care. While the Institute was an example of a complex and variable mix of state assistance and voluntary giving, the Education Department was establishing other special schools that were under state control entirely. In 1907, as amendments to the School Attendance Act were being passed to extend its coverage to other disabilities, Otekaike Special School was created for the training of boys who were "epileptic or defective. Richmond School for Girls was established in 1916. The interest in educating children with certain disabilities marks an important public policy shift. However, other disabilities were not given as favourable treatment by the state at this time. In particular, there was no distinction made between those with intellectual disabilities and those with psychiatric illnesses. Worse still, intellectual disability was seen by the eugenics movement, which was popular in the early part of the twentieth century, as being an example of degeneracy and a threat to national efficiency. An inquiry was held into "mental defectives and sexual offenders" in 1924 and 1925. The fact that these two groups were inquired into together is a demonstration of the government's thinking about intellectual disability at the time. In its recommendations, the need to prevent the procreation of the unfit was a popular refrain. The Report of the Commission of Inquiry states, In the inquiry into the problem of the feebleminded the most saddening experience of the Committee was the sight of so many children deprived of their full share of the light of reason, often maimed and stunted in body as well as in intellect. The sight was made sadder still by the reflection that unless prompt and effective action is taken the multiplication of these degenerates will increase and the race will steadily deteriorate. While education was being made steadily more available to children with disabilities during the early part of the twentieth century, services to adults with disabilities were scarce. Some blind adults were receiving assistance from the Jubilee Institute for the Blind. The Institute moved increasingly into providing sheltered workshops and accommodation, aided by government subsidies. The extremely custodial nature of the Institute meant that few workers there had any discretionary income to speak of. Instead, money was generally used to cover the costs of board at the Institute. Services to adults with disabilities became a prime concern of the state with the outbreak of World War I and the resultant return of formerly able-bodied men, now requiring assistance as people with disabilities. The process of returning these men to regular life was known at this time as "repatriation". state funded medical treatment and vocational training were provided. In 1918, the government established a Department of Soldiers' Reestablishment. By 1923, it had provided vocational training to over 40,000 disabled servicemen, as well as co-ordinating medical facilities. The Construction of Social Security Social security provisions were gradually being developed as well. Pensions were provided to soldiers. Entitlement depended on incapacity, as well as rank. The loss of two limbs entitled a soldier to a 100% Disability Pension, whereas the loss of an index finger merited a 20% Pension. In 1915, miners disabled by miners' pneumoconiosis were granted a pension, and thus became the first people to receive a pension based on their disability. Miners were not only organised and at the forefront of the union movement, but they were in a strategically important industry, particularly in the war years. Thus it was politically expedient to provide this group with social assistance. In 1924, the blind were granted pensions, which included a 25% subsidy on wages provided the total amount didn't exceed the prescribed figure of £182 per year. When the Bill was debated in Parliament, opposition politicians seemed much more concerned about the perceived lack of generosity of this means tested pension for the blind than they did about the fact that other people with disabilities or "invalids" as they were called, were not covered.16 From the debate, it is clear that Parliament was giving more and more consideration to pensions, perhaps funded through a contributory scheme. But the blind managed to bypass the wider social security debate and receive a pension based solely on their disability. Blindness is a feared disability, and is in many cases able to elicit considerable sympathy from policy makers, and for that matter members of the public in general. Furthermore, key politicians were in regular contact with representatives of the blind community. The director of the Jubilee Institute for the blind, Clutha McKenzie, was blinded himself at Gallipoli, and for a short time was a Member of Parliament. He was an effective advocate with strong political connections in his family, and was the first in a series of blind people who put considerable energy into lobbying in Wellington. This effectiveness, which repeatedly saw the blind given more favourable treatment than other equally deserving disabilities in the social security system has caused considerable friction between the blind and other disability groups. It is fair to say that no justification has been put forward by policy makers for the favourable treatment of the blind at the exclusion of other disabilities. Although there were widespread calls for the introduction of an "invalidity pension" throughout the 1920's, once again economic depression intervened in 1929. Further social security reform was therefore left until the Labour Government came to power in 1935. In 1936, the first invalidity pension was introduced. It was available to people unable to work because of accident, sickness, or congenital conditions. This was extremely significant legislation, because it established once and for all that the state had a responsibility to provide financial assistance to anyone with a disability who was unable to earn a living. It also gave people with disabilities some ability to purchase aids and appliances that may improve their quality of life. The 1938 Social Security Act, with its provision of free medical attention, meant that those with conditions that could cause permanent disability if not treated could have their need met irrespective of their ability to pay. The paradigm shift achieved by the first Labour Government perhaps represents the first real attempt in New Zealand to construct social policy for people with disabilities based on a clear principle. The new social security policy was based on the principle of "from each according to means to each according to need". This maxim, coupled with the government's stated objective of equality of opportunity for all, represented significant progress for people with disabilities. Increasing Government Involvement During the 1930's, the state increased the amount of money transferred to the voluntary sector despite the depression. The chief source of new money was the Art Union Lottery, which provided invaluable assistance to voluntary organisations providing services to people with disabilities. However, some organisations that were perceived as having the ability to attract funds independently suffered state funding cuts. The government subsidy of the Institute for the Blind was suspended during the depression, and reinstated in 1935 at 3.2% of the Institute's running cost.17 During the inter-war period, there was a marked increase in people with physical disabilities due to a number of polio epidemics. The state provided medical treatment, but it was left to the voluntary sector to form the Crippled Children's Society, which formally came into being in 1935. Like the Jubilee Institute for the Blind, the Crippled Children's Society made the most of their marketable client group for raising funds, but unlike the Institute, the Society did not form so close a relationship with government that they became constituted under an act of parliament. This is somewhat ironic, given that CCS went through its formative years during the tenure of the first Labour Government, when state involvement in social projects was encouraged. Indeed, while they were successful with their fundraising, the Society felt compelled to defend the notion of voluntarism against those who were of the view that work of the kind being conducted by the Society should now be the state's responsibility.18 The Society pointed out that such an organisation could pioneer services, and demonstrate the worth of such services to the state. Social attitudes had turned full circle since the 1870's. By 1939, roughly half of CCS's income came from government. They sought government assistance for the funding of occupational therapy in 1941. Funding was made available through sources such as the Lottery. On occasion, CCS would even provide financial assistance back to the state to make a service more widely available. For example, the 1941 CCS Annual Report notes a grant of £1000 to assist the Health Department and hospital boards with the establishment of travelling orthopaedic clinics, so specialist diagnosis and treatment could be more accessible throughout the country. Welfare officers from CCS did most of the preliminary work, arranging the transport of children to the clinics, and completing any follow-up work needed. 19 World War II created many more people with disabilities, and caused the government to think further about rehabilitation and appropriate social security measures. The Rehabilitation Act was passed in 1941, facilitating higher education, job training and land settlement schemes for servicemen. A range of rehabilitation and assistance services was also provided by voluntary organisations, often with subsidies from government. It was significant that, unlike the end of World War I, the government was much more aware of the need for more than just financial assistance, and invested in the provision of rehabilitation. By the mid-1950's, the Rehabilitation League became the government's official rehabilitation arm, having been totally absorbed from the voluntary sector. It was clear however that there was considerable bureaucratisation and fragmentation with respect to the provision of services to people with disabilities by various departments of state. This is a problem that has plagued the provision of services to people with disabilities, and has never been fully addressed despite regular reviews. In 1954, one of the first of those reviews occurred when the National Government established an interdepartmental committee consisting of representatives of the departments of Health, Labour, Education, Rehabilitation, and Social Security, as well as appointees from Treasury, the British Medical Association and the Auckland Hospital Board to advise Cabinet on civilian rehabilitation. Although the committee was of limited effectiveness, its establishment at least recognised the need for co-ordination between public sector service providers, if not with voluntary services. 20 Consumers Begin to Organise There was another important outcome of World War II in terms of the way public policy on disability was to be formulated in the future. People with disabilities who were left at home during the war had higher expectations of their own potential, and the services they needed in order to reach that potential. This was due largely to the empowering changes introduced by the Labour Government. At the same time, those returning to New Zealand who had acquired disabilities in defending their country were not prepared to be acquiescent to paternalistic disability service providers. Society at large was also changing, wanting a better world after the carnage and austerity of six years of war. All of these factors led to a desire on the part of people with disabilities to have a greater say in the way services were delivered to them. The first organisation of the disabled in New Zealand was the Dominion Association of the Blind, (now the Association of Blind Citizens of New Zealand) formed in 1945. Challenging the custodialism of the Institute was a bold step for the small group involved in the DAB's formation. It was the culmination of years of frustration with paternalism. Even as far back as 1932, there had been concern about the Institute's treatment of blind people and the lack of efficiency with which it was run. A booklet entitled "Betrayal of the Blind" was published by the former secretary to the Board of the Institute, Morton Aldis. It was scathing. The Institute is governed by a board of men to all intents and purposes appointed by co-optation, holding office for life, representing no one, responsible to no one, and removable by no one; and their authority is absolute. (The blind) work under no award; they have no union to assert their rights; and what is perhaps an even more vital weakness in their position, the blind, and those who, by circumstances or choice, are brought into direct contact with them, are so few that it is inevitable that the mass of the public, however generously ready to contribute to their assistance, should have no personal knowledge of or interest in the conditions in which they live; and the authorities of the Institute are therefore under no effective check or control from public opinion. The trustees can, at their own unfettered discretion, without being obliged to render any reason for their action, reject the application of any person for admission to the Institute; expel any person from it; fix the rates of wages and the hours of work of the inmates, the kind of work each one is to do, and the conditions under which they are to work and live; make rules for their guidance, and interfere in their private concerns. All this they can do, and most if not all of it they have done, without consulting their subjects, or giving any consideration whatever to their wishes, feelings or opinions.21 Advocacy committees of Institute Workshop staff were established prior to the formation of the DAB, and some minor victories relating to conditions were won. But the DAB is New Zealand's first officially constituted disability rights organisation. While the Institute for the Blind was undermining and dismissive of the DAB, predicting that it would be a thing of the past within six months, government was receptive to the Association's compelling message. The blind, the DAB said, were living with blindness every day. They were grown adults who were quite capable of articulating their needs. Even before the Institute resigned itself to working in an often-fractious relationship with the DAB, government was working closely with this new consumer voice. The Prime Minister, Peter Fraser, spoke at the Association's first conference in 1946. In 1949, an organisation with a consumer focus was formed that, while also having a close and fruitful relationship with government, was to take a very different path. The Intellectually Handicapped Children's Parents' Association (IHCPA) was originally solely an advocacy organisation. The name itself was an important statement, as it was seeking to minimise the use of the in vogue phrase "mentally defective", which had strong associations with the eugenics movement, to describe these children. The IHCPA mainly comprised parents of children with fairly moderate intellectual disabilities who wanted to ensure that their children were educated to the best of their abilities like any other children.22 In an era where approaches to disability were very much medically focused, the IHCPA at first struggled to demonstrate the legitimacy of an organisation offering the perspective of those living closely with the disability. While advocating to government for state provision of the services parents of those who didn't have an intellectual disability took for granted, the organisation now known as IHC came to the view that they were in the best position to provide a range of appropriate services to the children they represented. In 1954, the Minister of Health began to approve applications for capital expenditure and capitation subsidies. By 1964, IHC was receiving ten percent of the budget for children under sixteen boarding in its hostels from the Health Department, as well as a fifty percent subsidy on all building costs.23 Complaints from IHC members about poor service provision by the Department of Health, and the Department dragging its heels on the matter of community care, saw IHC gradually emerge as the primary provider of services to people with intellectual disabilities with generous support from government. They also retain their advocacy focus. There are frequent debates about, and reviews of the dual roles the organisation now has and whether these can coexist in the one organisation. The Dominion Association of the Blind, however, chose to hold the Institute for the Blind accountable for the quality (or perceived lack of quality) of services to blind people, as opposed to establishing itself as an alternative service provider. The DAB also lobbied government on matters ranging from social security to the need for high quality news and information on public radio. In 1958, the Dominion Association of the Blind achieved what is arguably the most remarkable lobbying victory of the disability consumer movement, but it was not without a prolonged political campaign. In 1952, the Association petitioned Parliament calling on the government to relax the abatement rate for the blind pension. While the Select Committee recommended that the petition receive favourable consideration, the National Government felt that blind people already received more favourable treatment than other people with disabilities, and could see no reason for extending this further.24 But under the Labour Government in 1958, the DAB was successful in having legislation passed entirely exempting the earned income of a blind person from the calculation of benefit entitlement. Despite concerns about the cost to the state of the Invalids' Benefit in the latter 1990's, this provision still remains in the Social Security Act, and is not available to any other disability group. During its campaign, the DAB argued that blindness imposed social and financial costs for which the state should compensate irrespective of earned income. They also said that having a point at which a benefit to compensate for such costs abated was a disincentive for blind people to leave institutional surroundings and make their way in the world.25 Yet there is no doubt that this argument could apply to many other permanent, significant disabilities. While the Social Security Amendment Act 1958 was a victory in blind people's quest for equality of opportunity, it was a blow to equity within the disability sector as a whole. The Social Security Act is perhaps the saddest commentary on the inconsistency of public policy to people with similar need. Consolidation While the 1960's were largely a period of consolidation, there were some important public policy efforts made in response to the fragmentation of services to people with disabilities. Social constructs of disability also began to make a very low-key impact on public policy as thinking on this subject began to mature. In 1965, the National Rehabilitation Commission produced a Report, in which it made it clear that more than medical issues should be considered when assessing the needs of people with disabilities. It recommended that a mechanism be found to bring the various aspects of rehabilitation together. It stressed the need for more accurate assessments of cases by teams including not only a doctor, but also a psychiatrist, psychologist, occupational therapist, social worker, placement officer of the Labour Department and manager of the local DSRL workshop.26 This report was significant, because it acknowledged the way in which disability impacts on an individual in all aspects of life, and called for an holistic approach. The 1960's were a prosperous decade, and this was reflected in the increase in assistance to voluntary organisations in the disability sector. The "big three" (CCS, IHC and the (renamed) Foundation for the Blind) received assistance with new ventures, but so too did a range of smaller agencies catering to people with disabilities. The majority of voluntary agencies now in existence have come into being after 1960, with a significant number providing services to people with disabilities.27 The 1970's The 1970's were an eventful decade in terms of public policy for people with disabilities. The government saw itself as being the primary provider of rehabilitation services to people with disabilities, with much of these being provided by hospital boards. The blind were an exception however, with essential rehabilitation services to them being somewhat on the fringes, and provided by the Royal New Zealand Foundation for the Blind. In a move away from the traditional custodial attitude shown towards people with disabilities in legislation, some rights-based measures were enacted. Again, the blind were at the forefront of this move. In 1972, legislation was passed according special status to guide dogs. It became an offence to refuse a blind person with a dog access to public facilities, except in very clearly defined circumstances. In 1975, another rights issue for the blind was won, this time with an amendment to the Electoral Act. Blind people were finally allowed to take the person of their choice into a polling booth with them, rather than having to rely on an official at the polling booth to assist them in completing the voting paper. Just as was the case in the rest of the world, New Zealand was becoming increasingly rights-conscious. People with disabilities were no exception. Programmes for people with disabilities were also developed during this period. The creation of New Zealand's Accident Compensation system with the passage of the 1972 Act was probably the first time New Zealand had led the world in any sphere of disability policy. Its lump-sum payments and emphasis on rehabilitation, as well as the statutory obligation of the Commission to encourage accident prevention were all groundbreaking facets of the scheme. On the down side, it created profound inequity between those disabled by accident and those disabled by illness or congenital condition. From the lump-sum payments through to specific equipment purchased and environmental modifications made, the state was vastly more generous to someone disabled by accident than it was to someone disabled in any other way. This has been another source of friction in the disability sector that has hindered co-operation on issues of mutual benefit. Thanks to recent accident compensation reform, there is now less of a disparity, but only because the Accident Compensation system is considerably less generous than it was. Deinstitutionalisation of a wide range of disability groups began to occur with increasing rapidity during the '70s, resulting in government departments increasingly becoming mindful of their need to change their practices and attitudes to complement this trend. The government's response was the Disabled Persons' Community Welfare Act 1975. Consistent with a greater emphasis on a rights-based approach on the part of advocates in the disability sector, this Act prescribed physical access requirements for public buildings that were of benefit to people with physical disabilities. But there was much more than that to this important legislation. It created an advisory committee to make recommendations to the Minister of Social Welfare on services for people with disabilities. It gave practical assistance to people with disabilities, to people caring for those with disabilities, and to organisations providing support and counselling. It provided suspensory loans for motor vehicles and home alterations and short-term alternative care for the children of people with disabilities. Also in 1975, an amendment was made to the Social Security Act creating a new supplementary benefit called the Disability Allowance. This was payable to a person with a disability who had demonstrable costs incurred as a result of their disability. It was partial wider acknowledgement of the point the blind had successfully made in 1958; namely that disability resulted in costs which should be met by the state. However, the provision was means tested unlike the provision covering the payment of the Invalids' Benefit to the blind. Those who were capable of finding work in the community were at this time being assisted by the Rehabilitation League, now Workbridge. For those who were deemed incapable of work in the community, government assistance for sheltered workshops increased in the 1970s. In 1970, the subsidy was set at fifty per cent of the cost of approved supervising staff and a fifty per cent subsidy towards the cost of land, buildings and alterations.28 There had been increases to both of these subsidies within 3 years. The 1980's The 1980s continued the trend of deinstitutionalisation and increasing government funding of large charitable agencies and smaller voluntary groups. It has been suggested that the substantial increase in the funding of voluntary agencies at this time was a deliberate strategy to encourage a bottom-up approach to welfare and a lessening of the role of the state in direct service provision.29 Whatever the rationale, by 1986, the government was allocating $24.5 million to voluntary agencies involved in the care of people with disabilities.30 From 1984 onwards, the role of the state began to change markedly, with the election of the fourth Labour government. Organisations of and for people with disabilities were kept busy responding to a deluge of consultation documents. They included the Benefits Task Force and the Royal Commission on Social Policy. However, it was the National Government of 1990 that brought radical and comprehensive reform to the disability sector. The 1992 "New Deal", which created a market model for disability support services, is discussed extensively in the next chapter. Inspired by overseas trends, by the 1981 International year of Disabled Persons, and by the effectiveness in New Zealand of coalitions of Maori and women's groups, the Disabled Persons' Assembly was formed in 1983. DPA is a unique mix of consumer and provider interests, with a constitutional requirement that all committees be controlled by people with disabilities. In its early years, DPA advocated on the use of Teletext, accessibility in general, and adequate income levels for people with disabilities. They were particularly successful with advocacy for the Total Mobility Scheme, entitling people with disabilities to subsidised taxi travel. The scheme, now administered by regional councils, has made a significant contribution to the ability of people with disabilities to participate more fully in society. Government welcomed this unifying voice, and consults with DPA regularly on issues affecting people with disabilities. Rights Come to the Fore The rights of people with disabilities were further strengthened by a number of significant legislative changes in the 1990s. In 1993, the disability rights movement in New Zealand achieved a crucial milestone, when the government past legislation that added disability to the grounds on which it was illegal to discriminate. In a controversial move, the government made the new Human Rights Act subordinate to other legislation. This was originally a temporary measure, due to expire on 31 December 1999. The Human Rights Commission was asked to undertake a thorough review of all legislation and government practices, so changes could be made or exemptions legislated for by 31 December 1999. Later, the government abandoned this project, and will shortly make further changes to the Human Rights Act making a number of exemptions permanent. The Act was the single most important civil rights victory for people with disabilities in New Zealand. In a sector which has become very divided by cultural and historical differences, this was one issue on which there was unity. Being seen as first class citizens under the law was absolutely essential. People with disabilities were determined that the law should make a clear statement that they had the same value as any other citizen, and were thus entitled to equality of opportunity. The question of rights when receiving a disability support service was addressed specifically by the Health and Disability Commissioner Act 1994, and its Code of Consumers Rights that was later adopted as regulations under the Act. The creation of a "Health Commissioner" was one of the recommendations to come out of the Cartright inquiry into the "Unfortunate Experiment" at National Women's' Hospital. By the time the legislation was ready to be passed through its final stages however, disability support services were under the health umbrella, and it was considered appropriate to extend the Commissioner's role to disability. The Code of Consumers' Rights has been widely circulated and is easy to understand. Complaints about breeches of the Code are handled in the first instance by advocacy services that seek to mediate a solution. Providers of disability support services are given specific time frames within which they must respond to complaints. The Code, while considered by some to be inadequate because it cannot deal with issues relating to funding and timely delivery, nevertheless has ensured that people with disabilities have a body external to the service provider to which they can take a complaint. In 1975, the Disabled Persons' Community Welfare Act for the first time made the accessibility of public facilities a legislative issue. For people with print disabilities, one of the key access issues not addressed in that Act was the matter of access to information. In 1994, people with print disabilities were successful in having a clause included in the new Copyright Act which gave the same recognition to access to information as was accorded to access to public buildings nineteen years earlier. Section 69 of the Copyright Act allows any prescribed body under regulations to the Act to produce material for the print disabled in formats other than print, without first having to seek the permission of the copyright holder. Apart from being an important recognition of the access issues facing people with print disabilities, the legislation has resulted in a speeding up of the production of material in accessible formats. This was world-leading legislation, and has since been emulated in other countries. After many years of advocacy, the question of people with disabilities serving on juries was addressed in a private member's bill introduced in 1995. The Juries Act 1908 says that "persons incapable of serving because of blindness, deafness or any other permanent physical infirmity" may not serve "in any jury, in any court, on any occasion". Legislation that has received the unanimous support of the Justice and Law Reform Committee is due to come into force on 1 March 1999. It introduces a regime requiring a judge to assess the capability of a juror with a disability to serve on a case by case basis. There was much public debate on this subject, with many people considering the expressed desire by people with disabilities to serve on juries to be entirely unreasonable. For people with disabilities, the blanket ban was seen as a statement about their lesser status in society. It was considered that they were being limited by perceptions of the uninformed public, rather than by their own capability. With recognition of the needs and potential of people with disabilities at an all time high throughout the Western World, there was considerable pressure from the disability sector for the government to collect reliable data on the prevalence of disability so appropriate planning for service delivery could be made. The disability sector, which now boasted a number of highly effective lobbyists, advocated strongly for a question on disability to be re-introduced to the Census after an eighty-year respite. The response by government to this call was a sad reminder that people with disabilities were yet to be treated in the same way as other vulnerable minorities in the community. The government, through Statistics New Zealand, agreed to include a question on disability in the 1996 Census, but pointed out that overseas examples had demonstrated problems with self-identification in this sector. That is to say that some people with significant disabilities may not perceive themselves as having a disability. For this reason, it was suggested that a follow-up survey was necessary in order to validate the data collected from the main question in the Census. While groups in the disability sector saw the logic of this, there was some concern that the government was not prepared to fund the follow-up survey from Vote Statistics. Instead, organisations of and for people with disabilities were asked to lobby government departments for funding for the Survey, and even contribute to it themselves. Many organisations obliged, considering that the data simply had to be collected no matter what, but others felt that as no other question was being funded through means other than Vote Statistics, people with disabilities were being discriminated against. The question and the survey went ahead. While it has produced many highly useful statistics on disability in general which will assist with planning for future service delivery, for many disability groups the sample size was too small to provide reliable data on specific disability types. With the increased emphasis on rights came a significant decrease in the extent to which public policy could be driven by sympathy. The last five years have seen a number of reviews of the Disability Allowance and the Invalids' Benefit. These reviews were prompted by concern over the escalation of the number of people receiving these disability-related benefits. In an era where cutting unnecessary state expenditure, and social security expenditure in particular, was in vogue, the government was able to use the rights argument to its own advantage. In particular, changes announced in the 1998 Budget which tightened the criteria for the Invalids Benefit and introduced a trial of work capacity assessment, were marketed as being focused on highlighting what people with disabilities could do rather than what they could not. Conclusion During most of the 19th century, it was difficult to obtain state assistance that facilitated people with disabilities being afforded the most basic of opportunities. Legislation and practices made it very clear that people with disabilities were not perceived as being entitled to equality of opportunity in society or in law. This gradually altered thanks to changing social attitudes in general, and latterly an increasingly educated, assertive disability sector. As we approach the 21st century, the state invests substantially in meeting the needs of people with disabilities. This includes financial investment in direct service provision and in assistance to community organisations, as well as investment in legislation that seeks to create an appropriate climate for people with disabilities to maximise their potential. As forthcoming chapters will demonstrate however, history to date has only established a platform from which real equality of opportunity can be launched. The words contained in the new rights-based legislation suffer from lack of deeds to implement their intent, and resources to enforce them. Additionally, the absence of strategic goals to unify the public sector's approach to disability causes disparity of attitudes between government departments, and between entitlements based on disability-type and cause of disability. The legacy of organisations founded on principles of charity and well-meaning compassion negate against a thorough investigation by the state of its rightful role, and historical under-funding. There is still much to do if people with disabilities in New Zealand are to be accorded equality of opportunity. Chapter Four THE "NEW DEAL" - THE DISABILITY SUPPORT SERVICES FRAMEWORK Introduction A comprehensive series of changes to disability support services was introduced by the National Government in 1993. They warrant particular scrutiny, because the changes sought to establish a consistent framework for the state's purchasing of disability support services in terms of making one agency of government responsible for all purchasing, and establishing clear criteria regarding the definition of disability. For the first time, a serious attempt was made to move away from reactive disability policy based on historical anomalies, sympathy and/or who was shouting the loudest at the time. The Bolger Government took the fragmented, discrepant mess that had evolved since the 19th century and sort to create a framework underpinned by a set of principles and guided by clear objectives. Like other social reforms taking place at the time, they were motivated by four principles; fairness, choice, equity and self-reliance. The principles developed specifically for the disability reforms sought to be consistent with these overarching goals. Unfortunately however, the reforms were very much limited to rehabilitating and/or supporting the individual rather than looking at wider environmental constraints. They also failed to examine whether budgetary allocations were adequate given heightened expectations on the part of people with disabilities and deinstitutionalisation. The introduction of the strict contracting regime for the voluntary sector by the Bolger-led National Government has been described as everything from "nothing new" to "a revolution in the relationship between government and the community. As demonstrated in Chapter 3, governments have always assisted voluntary organisations to provide services which the state has either not been in a position, or not of a mind, to provide. There are two key ways in which the present contracting regime differs markedly from anything preceding it. Firstly, the government became much more prescriptive and specific about what it expects voluntary agencies to do with the money they receive. Secondly, voluntary organisations must account in greater detail for every dollar spent. The present system of contracting has resulted in cross-subsidisation of supposedly government-purchased services by the donor dollar, because government often does not pay the full cost of the services it purchases. The voluntary sector has struggled to retain its culture in a more competitive environment. It has also been argued by some that contracting has resulted in a reduction of innovation within the sector, because voluntary organisations now provide what the government will purchase. This has resulted in greater government control of the services voluntary agencies provide, turning voluntary agencies more into agents of the state as opposed to being agents of their clients. Additionally, a system for assessing the needs of people with disabilities was introduced, which some people with disabilities find disempowering. However, it has also clarified which sector of the community is paying for different services, identified some unmet need, and caused voluntary organisations to become more efficient and accountable. Genesis of the New Deal In July 1991, Jenny Shipley, who was then Minister of Social Welfare, released the government's major statement on social assistance, "Welfare that Works". The Document was a blueprint for sweeping reform of income support, health and education. The section devoted to "Social Support" states that a separation between the funders who in turn contract with the providers already occurred with respect to the funding of many health and social services. The Document stated that this would be further pursued and promoted because the government saw such an approach offering: * improved accountability from the providers of services as the funder must explicitly write a contract for services before the funds are released; * increased competition for funds from providers of services, leading to an increase in the efficiency with which those funds will be used; * an improved basis for ensuring the system is oriented towards making the best decisions to meet both the government's goals and the needs of those requiring support, because the funding agency is better able to switch its funding if the service deliverer fails to meet the standard of services demanded by the contract...; * greater personal choice for users of the service because, where an agency is both funder and provider, the user is inhibited from seeking the services elsewhere; and * improved flexibility, creating a basis from which those representing particular groups can seek to have services tailored to meet their specific needs 31 A discussion document issued in 1992, "Support for Independence for People with Disabilities- a New Deal", discussed the disability sector with greater specificity. It identified a number of key concerns the government had with the regime they were about to replace. These were: * No single agency is responsible for purchasing the complete range of services. * No single agency is responsible for purchasing support services for all people with disabilities. * Present funding arrangements are inflexible and confused. 32 The changes introduced were based on a set of principles which stated: * Government agencies providing services for people with disabilities should be separate from the agencies with responsibility for funding and purchasing services. * All of a client's funding for a particular type of service should be located in one agency. * A single agency should be responsible for purchasing support services for all people with disabilities. Clients will deal with the same agency for purchasing the services they need, regardless of the nature of their disability. * The agency responsible should be given a single "integrated budget" to work within. This will enable greater flexibility in service provision and encourage better value for money. * The funding for disability support services will be ring-fenced from any other funding the purchaser controls. This means that funding allocated for disability support services cannot be used for any other purpose. The government's stated goals for Disability Support Services were: * clients have access to appropriate services of an acceptable quality; * services provided are responsive to the needs of people with disabilities; * there are incentives to promote rehabilitation; * the system is sensitive to the needs and preferences of Maori and other groups; * policies reflect the needs and importance of caregivers, voluntary agencies and other service providers; * services provided give value for money; the cost is acceptable to government as well as affordable and manageable in the long-term; * changes are implemented in a way which minimises disruption to the lives of people with disabilities and their caregivers. 33 The government also stated in the consultation prior to the reforms that it was interested in improving the quality of life of people with disabilities by delivering the most appropriate services within the currently available resources. It was stressed that the reforms were not about increasing or decreasing expenditure. No effort was made as part of this reform process to determine whether the cake being apportioned was of the right size. The reform process and its guiding principles focused more on structure of service delivery than on a thorough examination of what the state needed to do in order to maximise opportunity for people with disabilities. In other words, the "how" questions were asked without asking the "what" questions first. As a result of consultation, it was determined that Disability Support Services would be purchased by the four Regional Health Authorities (RHAs). This resulted in a transfer of funds and programmes from other agencies, primarily the Department of Social Welfare and the Ministry of Health. Area Health Boards, which also provided a range of services to people with disabilities, were abolished as part of the reforms. A Disability Support Services (DSS) section was created. When organisations of and for people with disabilities were considering their positions on the reform proposals, there was considerable debate that took place among representatives of those groups about where disability support services belonged. The inclusion of disability in the domain of the RHAs was controversial for a number of reasons, the most frequently cited of which was that some people with disabilities felt that the inclusion of disability under the Health umbrella re-enforced stereotypes of people with disabilities being sick. There were also fears that the inclusion of disability under Health would result in a continuation of a medical approach to disability that was no longer acceptable to many people with disabilities.34 In other words, there was concern that RHAs would view disability as something that should be "treated" at the individual level of the impairment rather than addressed at the societal level. Some feared that the concerns and needs of people with disabilities would be obscured by media and political attention to the pressing health issues which affected a larger, more vocal group of New Zealanders. The fact that the word disability is not mentioned in the names of either the Regional Health Authorities, the Ministry of Health, or the RHAs' eventual replacement, the Health Funding Authority was seen by some as a signal of the "poor cousin" relationship disability had to endure. Operational Components of the New Deal DSS uses the following definition to determine whether someone is entitled to its assistance: A person with a disability is a person who has been identified as having a physical, psychiatric, intellectual, sensory or age-related disability (or a combination of these) which is likely to continue for a minimum of six months and results in a reduction of independent function to the extent that ongoing support is required. 35 This definition has undesirable medical overtones and seems to take for granted the fact that society will not alter to lessen the disabling nature of an impairment. The reference to "ongoing support" being "required" may cover assistance such as home help and care giving, but seems a little out of place when considering special equipment or modifications such as Braille. The new Disability Support Services framework broke down the purchasing of services into three components: needs assessment, service co-ordination, and service provision. Needs assessment is the entry point to the DSS framework. It is envisaged that this will be a discovery process where the assessor and the client mutually agree on the client's needs. Service co-ordination is the process of assisting the client to access the appropriate services from various providers who can meet the assessed needs. Service provision refers to the organisations actually delivering the services to the client. Where possible, these components were to be purchased from separate providers. The RHAs were given guidelines designed to influence the purchasing of services. The process of ensuring that all services complied with these guidelines was somewhat restricted in earlier years because of the decision to "grandparent" existing services to minimise disruption. While some of the guidelines were quite specific about what was to be purchased, all decisions had to conform to a set of underlying principles. The 1994-95 guidelines stated six principles that were to underpin all purchasing decisions. These were: equity, effectiveness, efficiency, safety, acceptability, and risk management.36 Once the reforms had been implemented, additional concerns soon manifested themselves. Funds appeared to get lost in the transition from the old system to the new one, and budgets that were previously not capped became capped under the new system. Budgets that previously were used entirely for appropriations to people with disabilities were in some cases required to cover administration costs. These issues became a particular problem in the area of specialised equipment for people with disabilities, which up until 1995 operated without a capped budget under the Disabled Persons' Community Welfare Act. Although organisations of and for people with disabilities were assured that the now capped budget for equipment would be monitored closely and increased if necessary, demand soon far outstripped the allocated funding. This meant that the relative importance of needs that were extremely real to all applicants had to be prioritised. Heightened expectations as a result of publicity about the new regime, continued deinstitution-alisation, plus the availability of increasingly sophisticated and expensive technology were major factors in demand far outstripping the funds available. Rationing schemes covering equipment such as adapted computers for the blind and deaf, and wheelchairs and vehicle modifications for people with physical disabilities were soon announced. These varied from one RHA to another, but the North Health criteria in operation in 1996 was typical of the policies in place. A client with a disability . . . will be considered for assistance for equipment or services which are essential to allow the person to: * Achieve mobility; * Express needs and feelings; * Return to or remain in their own home or private accommodation; * Care for family members residing in the same dwelling (where the client's disability is making this impossible); * Access full time tertiary education, training or employment. The equipment, or service provided must be essential to enable the person to meet the eligibility criteria. If the equipment or service provided will improve quality of life only, eligibility criteria will not be met. 37 It is interesting to observe that unlike countries such as the USA, the passage of New Zealand's Human Rights Act did not result in a switch to employers baring the entire responsibility for accommodating the additional needs of people with disabilities. Although waiting lists are long, the RHAs, now the HFA, still fund equipment for employment related purposes, even though there is a "reasonable accommodation" clause in the Human Rights Act requiring employers not to discriminate unless not doing so would cause financial hardship to the employer. The HFA however is more selective about funding equipment than it used to be. For example, whereas both standard computer equipment and adaptive technology might once have been purchased, the HFA now expects the employer to purchase the computer if such equipment would have been purchased for a non-disabled employee. In reality though, more and more employers are purchasing all equipment required due to the waiting lists for equipment. For people not employed with a need for adaptive technology, the waiting lists have lengthened dramatically. There are a number of cases where blind students requiring a computer to take notes in lectures, and a scanner to read printed material, have not received their equipment until well into the academic year. Such practices deny students with disabilities who rely on adaptive technology the right to maximise their full potential. They are instead impeded by the financial constraints on the HFA's equipment budget. Safety in the home became a common top priority for other services such as home help, which eventually became increasingly hard to get due to spiralling demand. The Disability Surveys perhaps paint an overly rosy picture of the degree to which needs have been met. The analysis of the data from the surveys, conducted by the Ministry of Health and the HFA, reports that, about half the people with disabilities living in households perceived a need for equipment and/or personal assistance. The majority of this group (67 per cent) considered that these needs had been met completely, and 11 per cent considered their needs had not been met at all. Self- reported needs for personal assistance were more likely to be met than equipment needs. Older people were more likely than younger people to consider their needs to have been met." 38 The Document comments that one cannot conclude whether the difference in satisfaction levels between the elderly and younger members of the population have to do with generational expectations, whether a genuine inequality of resource distribution has been highlighted, or both. There is probably an element of both factors in this important statistic. The number of elderly people using newer technologies such as personal computers is low in the general population as a whole. No data is available on whether the number of elderly using the Internet in the population of people with disabilities is about the same or lower than the average. This empowering technology however is being increasingly demanded by younger people both to improve access to information those without disabilities take for granted, and to help realise educational and employment aspirations. So while younger people are likely to be demanding more in the way of equipment, what they are demanding is also quite expensive. Whose Needs are they Anyway? Some consumers gradually became concerned and disillusioned with what they viewed as the paternalistic nature of the new needs assessment system. In theory, needs assessment is the entry point at which one's entitlement to, and need for services is established. The availability and quality of needs assessment varied markedly throughout the country, and it took years for certain disability groups to have access to anyone qualified to deal with the specifics of their disability. An organisation for the deaf has only recently been awarded a contract for deafness-specific needs assessment services. The blind still do not have any government funded needs assessment services available to them. The Foundation for the Blind provides needs assessment services funded from charitable giving. Not only is this inequitable given the access many other groups of people with disabilities have to needs assessment, but it also contradicts the government's stated preference for separating needs assessment from service provision due to the risk of an agency which does both, aggressively "selling" their services to clients during a needs assessment. Needs assessment also raised and then dashed hopes. It was soon apparent that despite promises that there would be close tracking of identified need, and that linkages would be made between such need and funding decisions, being assessed as having a need is no guarantee that the need will be met. Finally, some consumers with disabilities object to what they perceived to be the paternalistic nature of the needs assessment system. They consider it patronising that a third party has to validate their needs when they feel quite capable of determining that need and making decisions about how it could best be met. Debates within the sector continue about whether the way to deal with this concern is through some sort of voucher system. While the Health and Disability Services Act does provide for individuals to opt out of the government purchaser system in favour of government approved plans which may in some cases involve a voucher system, the government has never taken the steps to enable this to occur. Musical Chairs As a result of the reforms, some progress was made in resolving long-standing blurred lines of responsibility. Where a person has a disability which is the result of personal injury by accident which has occurred on or after 1 April 1974 it should be determined whether they are eligible for cover from the Accident Rehabilitation and Compensation Insurance Corporation. Where a person's level of independent function is reduced by a condition which requires ongoing supervision from a health professional (for example, in the case of renal dialysis) that person is considered to have a personal health need rather than a disability. Where a person has both a disability and a personal health need the services provided to address those needs are disability support services and personal health services respectively. The acute mental health services needed by people with a psychiatric disability are considered disability support services." 39 Despite the government acknowledging during the policy formulation process that the multiplicity of agencies was confusing for consumers and caused government departments to quibble over responsibility for a given need, this problem was not addressed entirely at the time of the New Deal's introduction. Perhaps it never can be addressed entirely. The suggestion that it could be reflects a fundamental flaw in the thinking behind the reforms. The promise of a single agency was, in retrospect, unrealistic in an era where people with disabilities desire to be a part of the community. Most government departments provide some services that will be consumed by people with disabilities, yet the state has not adopted a state sector-wide policy on the appropriateness and accessibility of services to people with disabilities. Government departments have found it too easy to dismiss disability as someone else's problem. For example, there is considerable variation among government departments regarding their willingness to make material available in formats other than print for people with print disabilities. Yet even in disability specific programmes, there is still considerable lack of clarity in some areas. Interface issues between Health and Education remain, despite a number of attempts to agree on a definitive "Health/Education Interface". Children have been casualties of this ongoing debate. For example, while there is agreement on the part of the government that travel instruction for blind children of all ages is essential, it is not currently being purchased because of ongoing debate over whether it is a Health or an Education issue. A further example of these interface problems is that a seventh form student who may have recently been given a piece of equipment which meets their requirements will have to return that equipment to the Ministry of Education and apply for the same type of equipment again from the HFA if they wish to attend a tertiary institution. Debates have raged over whether certain disability-related costs ought now to be claimed by consumers under the Disability Allowance, or whether those costs are now Health's responsibility. For example, the New Zealand Income Support Service (the predecessor to Work and Income New Zealand) went through a phase of declining applications to vision impaired people wishing to subsidise the rental of a print magnification device from the Foundation for the Blind through the Disability Allowance. The Foundation was renting this equipment to these clients because the clients did not qualify for RHA assistance, yet NZISS refused to consider these costs because they claimed equipment was now Health's responsibility to fund. In the end, the matter was resolved by the Foundation for the Blind lobbying an Associate Minister of Social Welfare. With the recent trialing of work capacity testing for recipients of the Invalids' Benefit, there has been no clear statement as to how, or whether, there will be any interface between the needs assessment system run by the Health Funding Authority's Disability Support Services section, and the assessments carried out for work capacity by Work and Income New Zealand. This is causing people with disabilities to be nervous about a multiplicity of needs assessments seeking similar information and possibly coming up with disparate results. Changing Relationships The reforms changed the nature of relationships - both between consumers and providers, and between providers and funders (or purchasers as they became known during the era of the RHAs). The advent of a strict system of contracts has not necessarily resulted in greater accountability to the government or the community for the manner in which funds are used. The contracts may, and in fact in most cases do, stipulate thorough and frequent reporting to the government purchaser. However, voluntary agencies have reported that officials seldom read the reports that the contracts stipulate must be produced. Voluntary organisations reported that the Regional Health Authorities rarely even acknowledged receipt of reports let alone provided any feedback on the information they contained. The term "the black hole" was widely understood among voluntary organisations to refer to the place where their reports, often produced at considerable effort and expense, ended up. For their part, RHAs reported that they simply didn't have the time to read the flood of reports they received on a regular basis. In other words, the monitoring aspects of government purchasers were not given adequate attention or resourcing. 40 Having said that, the reports have provided two identifiable benefits. If consumer organisations representing the clients of agencies in a particular part of the disability sector wish to raise concerns about the conduct or quality of service of a voluntary organisation, the reports can sometimes be useful for the purchaser to determine whether purchasing from these agencies should continue, and to ensure that what was purchased was in fact provided. It does seem that if consumers complain, someone at the RHA (latterly HFA) or the Community Funding Agency CFA would get around to reading the reports produced by the organisation at the centre of the complaint. Even this benefit has two provisos associated with it. Many contracts contain a secrecy clause, and such clauses are often used to deny consumers access to this important information. Secondly, there is no guarantee that the official looking at the report will actually understand the nature of the service being provided, and any defect in the provision of that service which the report may highlight. Relationships between consumers and provider organisations in the voluntary sector have also changed as a result of the reforms. In earlier times when the government more or less gave a cash grant to voluntary agencies to provide a very loosely described set of services, consumers and providers could negotiate priorities. One of the most effective examples of this arrangement was the relationship between the Royal New Zealand Foundation for the Blind and the Association of Blind Citizens of New Zealand. Although relations were at times fractious, meaningful consultation did take place about priorities and the need for new services as perceived by consumers. In the new environment, that discussion can only take place over money donated by the general public. A consumer group like the Association now needs to try to establish close links with government purchasers. The new regime has also impacted negatively on relations between providers in the voluntary sector. While the government has sought co-operation between providers, scarcity of resources in a quasi-market has caused providers to be more secretive for fear of losing their all too thin slice of an inadequately sized cake. Despite desires on the part of voluntary organisations to preserve the co-operation between agencies, there is always a feeling that withholding some crucial information of a political or contracting nature could give the organisation in possession of such information the edge they need in order to gain more scarce funding. Some smaller voluntary organisations for which government funding is the main or only source of financial assistance have also begun to feel constrained in their advocacy functions. There has been fear of "biting the hand that feeds them" meaning that vulnerable consumers who may in some cases have difficulty in advocating for themselves are not having their needs articulated as forcefully by agencies who used to fulfil this role. The fear that these agencies feel appears justified given the decision by the government in 1998 to withdraw funding from umbrella organisations whose core function is advocacy, such as the New Zealand Council of Christian Social Services and the New Zealand Federation of Voluntary Welfare organisations. Contracting Concerns Following the 1994-95 contracting round, voluntary organisations identified some key problems with the contracting regime. These included: Negotiation delays, RHA staff not having the necessary background knowledge, the workloads associated with contracting being too high, RHAs' ability to refuse to negotiate the levels of funding, part-funding having an adverse effect on the quality of a service, contracting with RHAs having an adverse impact on an organisation's independence when the terms of a service are dictated by the RHA; the RHA priorities not always corresponding with the priorities of voluntary organisations, and no negotiation between the two. 41 Negotiating the contracts themselves has proven to be a protracted, one-sided, frustrating process for voluntary organisations. Because the RHAs (now the HFA) are monopoly purchasers, negotiation does not take place on an equal footing. Government purchasers are always aware that in the end, the voluntary organisation can either take or leave the final government offer, and that the desire of these organisations not to let their clients down will mean that they will usually take the offer. Prior to the amalgamation of the four RHAs into one national funder, some larger, nation-wide voluntary organisations were not successful in having one Regional Health Authority negotiate a national contract on behalf of all four RHAs. This was particularly difficult when the RHA boundaries did not coincide with the regional boundaries of such organisations. In research conducted in 1995, the New Zealand Federation of Voluntary Welfare Organisations found that one organisation had 11 contracts ranging from $38,000 to $650,000. The average length of each of those contracts was 40 pages. Other organisations had been successful in negotiating a national contract, but still had regional contracts for smaller amounts. This process has proven to be resource-intensive, something much more noticeable to a cash-strapped voluntary organisation. 42 While increased competition may have eventuated in small pockets of the disability sector, none of the major players in that sector appear to have been challenged seriously by any new operators. Organisations like the Foundation for the Blind, CCS and IHC still have the prominent place they have had for many years. This may be because the government has never resourced the new regime appropriately. IHC, CCS and the RNZFB all have well-established means of soliciting charitable giving, and there is still considerable cross-subsidisation of services supposedly purchased in their entirety by government. This is not surprising, given that in every jurisdiction where a quasi-market approach has been introduced, there is evidence of the government not paying the full price of what they claim to be purchasing, resulting in subsidisation either from the work of volunteers or donor funds. 43 An additional barrier to the entry of new operators has been the RHAs' insistence on complex, legalistic contracts. These are daunting to professionals who may have the skills to provide services, but not the ability to negotiate contracts nor the funds to hire the assistance of someone with the acumen to negotiate contracts on their behalf. While the current system theoretically has built-in safeguards against capture, barriers to entry, lack of understanding of the services being purchased, patchy evaluation of unmet need and a lack of resources have allowed that capture to continue. Adjustments Since the advent of MMP, there have been a number of major changes to the original 1993 regime. In May 1997, a steering committee appointed by the government to advise on the implementation of the coalition agreement's health policy issued a report. In it, they identified a number of problems with the regime as it then was. The first was that there was a tendency for DSS to treat all people with disabilities as if they were one client group. This is in marked contrast with times past, when the nature of the relationship between government agencies and providers of services for specific disability groups had unique characteristics. It seems there had been considerable over-compensation for this. The Report identified the frustration felt by people with disabilities that the needs unique to their particular disability were not understood, and that too often, there were generic solutions offered. The second major concern was that the creation of a purchaser had taken autonomy away from people with disabilities and/or their caregivers in determining what services they needed and from whom they would be purchased. The report therefore recommended that the ability for certain people with disabilities to purchase their own services with the aid of cash assistance be investigated. The Steering Group also identified a number of cases where there appeared to be little benefit from the separation of needs assessment and service co-ordination. In many cases, the Committee found this process raised costs without any benefit, and necessitated people with disabilities having to repeat information to the service co-ordinating agency that they had already given to the needs assessment provider. Finally, the Committee found that specifications of the interface between disability support and personal health had not been analysed. It felt that the lack of clarity could be compounded by people with a primarily medical background assessing and co-ordinating needs of individuals with a disability, when the needs of those individuals are not in fact medical.44 The government has subsequently acknowledged that there has been considerable emphasis on structure over the last five years. With these issues now largely stabilised, the government promised greater emphasis on content. In June 1998, the government outlined its future direction in a strategic plan in which they promised to "build on the new deal". In it, they stated three key goals for disability support services: maximising independence, effective habilitation and rehabilitation, and supporting opportunities to participate. 45 It is unclear what the government means by "independence", but in the context of the present government's philosophy, it may largely mean not requiring assistance from the state. This appears to be substantiated by comments made in the Ministry of Health's and HFA's analysis of the Disability Survey, such as, Over four in ten (forty-two per cent) of all people reporting a disability had no need for disability support services. This group presents an opportunity for health gain in terms of prevention of future dependency, as this group is at high risk of requiring assistance in the future.46 The use of the term "risk" in this context is disturbing, since it portrays the need for assistance on the part of people with disabilities as a negative thing. It makes it clear that assistance is not viewed as the facilitation of independence, which is different from self-reliance. For example, compensation for the costs of disability may be seen by some as the morally right thing to do as an important component of ensuring equality of opportunity. The outcome of this investment may be greater participation in society. Yet because this involves an ongoing allocation of money by the government to individuals with disabilities, it may be viewed by some current policy makers as dependency on the state, and thus a negative outcome. The government sought to deal with the confusion that still existed with respect to the responsibilities of government agencies by announcing the introduction of the "lead agency" concept. It is intended that the Ministry of Health will determine which government agency is to take primary responsibility for specific disability support issues where more than one government department has an interest or responsibility. At time of writing, it is too soon to ascertain the real impact of these changes. Conclusion The government's 1993 reforms have undoubtedly resulted in greater efficiency and transparency. However, they have not delivered all that they promised. Even if they had, the reforms fell short of what is required to make a significant difference to the ability of people with disabilities to participate. They never attempted to deal with the handicapping aspects of society that causes an environment to be disabling. Historical funding anomalies still exist for wont of proper research into unmet need. Wider consumer choice is not widely evident within the sector. Lack of research and a clear philosophy of the state's role has often meant that groups who have resorted to the old practice of policy development by media have succeeded in gaining extra funding if they have been able to mobilise sufficient media interest and public support. Examples of this include the significant increase in funding for mental health and autism services. Those who would have been considered to have sufficient need to warrant assistance prior to the reforms in areas such as equipment and home help are in some cases no longer provided with that assistance. Relations between consumer organisations and providers have altered, with providers having less control over the services on which government money is spent. Those who do have control over these decisions are people who seldom have direct contact with people with disabilities, and are certainly not in daily contact with the client groups affected. They are therefore much less informed about the impact of their decision than the consumers or providers who are now disempowered. This is somewhat out of step with most Western countries, which are moving towards structures that empower people with disabilities. Providers are unable to move funds to other areas if a need suddenly becomes evident. While considerable attention has been paid to structural issues, no government-sponsored initiative has investigated whether appropriations in the Disability Support Services area are sufficient to achieve the government's goals. In some respects, the proposed universality of the reforms did come to pass, and policies were considered to be too generic for many people with disabilities. Chapter Five GOVERNMENT POLICIES ON DISABILITY OUTSIDE THE DSS FRAMEWORK Introduction As has already been demonstrated in Chapter 4, public policy on disability is inconsistent and uncoordinated. We therefore must look outside the DSS framework as described in Chapter 4 in order to obtain a complete picture of disability policy in New Zealand. Acts of parliament, government policy documents and international law all affect New Zealand's public policy on disability. What becomes all too clear is the dichotomy between legislative statements and international obligations and the degree to which the laudable aims embodied therein have been realised. Legislation The Human Rights Act 1993 outlaws discrimination on the grounds of disability. It applies to employment, business partnerships, vocational and qualification authorities, access to public places, provision of accommodation, educational establishments, and provision of goods and services. At the time of the Act's passage, the government chose to require the private sector to adhere to these provisions, but to exempt other legislation and the government in general from the provisions of the Act until 2000. Section 151 of the Act is due to expire on 31 December 1999. A year earlier, a project known as Consistency 2000 was to have been completed. This would have involved the Human Rights Commission identifying legislation and government practices that conflicted with the Human Rights Act, resulting in decisions about legislation that needed amending and legislation that would be permanently exempt from the provisions of the Human Rights Act. It is the government's intention to amend the Human Rights Act, officially cancelling Consistency 2000. The government has stated its intention to comply with the Act except for certain exemptions it deems necessary in welfare services, but amendments to legislation that contravenes the Human Rights Act will not now occur on mass.47 This was to have been confirmed in amending legislation the government hoped to pass in 1998, but it withdrew the Human Rights Amendment Bill just prior to the second reading debate because it was unable to find the numbers to ensure its referral to a select committee. The abandoning of Consistency 2000 has caused concern among groups representing those whom the Act is seeking to protect, and to business leaders. Both groups have expressed the view that the government has seen fit to set a different standard for itself than that to which it expects the rest of the community to adhere. Legislation that discriminates will now remain on the statute books. The Human Rights Act contains a number of clauses which void the anti-discrimination provisions protecting people with disabilities in circumstances where accommodation of people with disabilities would be unreasonable, or where such accommodation would place the individual with a disability or others in an unsafe situation. For instance, Section 29 of the Act expressly allows discrimination against people with disabilities to occur in employment where a job can only be done with the aid of special equipment or services, and it would not be reasonable to expect the employer to provide such equipment or services. Additionally, if the tasks that a job requires the individual to perform may be harmful to the individual with a disability or to others, discrimination is lawful. It is too early to evaluate the impact that the Human Rights Act has made in practical terms. There is some criticism that it does not have the "teeth" of the Australian or American legislation. The Human Rights Commission can recommend a solution, but has no judicial powers to enforce its decision. It must rely on the Complaints Review Tribunal for this function. Hearings can take some time to be heard, by which time the defendant may have made the suggested solution unworkable. An example of this is the Wellington Stagecoach Bus Company case, where the Commission ruled that the company should purchase busses that were accessible to wheelchair users. The company purchased busses that didn't meet this requirement while the case was waiting to be heard by the Complaints Review Tribunal. The tendency for people with disabilities to be grateful and passive recipients of services, coupled with the unique challenges in communicating with parts of the disability sector has made rights education a challenge. Many people with disabilities are also aware of the potential for a backlash against what some members of the public perceive to be radical and unreasonable complaints. Because the New Zealand government does not sponsor any public education campaigns to change public perceptions, these attitudes are difficult to change or counter. There have also been expressions of concern about the time that it takes for complaints to be dealt with by the Human Rights Commission. This is not a unique situation to New Zealand, but it raises yet another source of concern that the Human Rights Act must be more than New Zealand's legal showpiece. Another rights-focused piece of legislation is the Code of Health and Disability Consumers' Rights 1996, which is a regulation made pursuant to the Health and Disability Commissioner Act 1994. The Code stipulates ten rights of consumers of health and disability support services. They are: Right 1: the right to be treated with respect Right 2: the right to freedom from discrimination, coercion, harassment, and exploitation Right 3: the right to dignity and independence Right 4: the right to services of an appropriate standard Right 5: the right to effective communication Right 6: the right to be fully informed Right 7: the right to make an informed choice and give informed consent Right 8: the right to support Right 9: rights in respect of teaching or research Right 10: the right to complain It is important to emphasise that these rights only apply when dealing with providers of health or disability support services. Furthermore, the Commissioner is not empowered to investigate matters relating to the lack of provision of a service, or the time it takes for a service to be provided. For example, some people with disabilities claim that the HFA's failure to fund a certain service is in breech of stated government objectives and/or fundamentally inequitable. The Health and Disability Commissioner is not a source of redress for this type of concern. The Education Act 1989 includes clauses protecting the rights of children with disabilities. Section 8 of the Act accords every child the right to attend any state school. Section 9 of the Act provides for agreements to be made regarding children with special educational needs. The Social Security Act 1964 provides that an Invalids' Benefit and a Disability Allowance may be paid under certain circumstances to people with disabilities. For everyone except blind people, the Invalids Benefit is affected by one's earned income, as is the case with the Disability Allowance. There is concern among organisations of and for people with disabilities that New Zealand has not addressed adequately the question of assistance with the financial and social costs of disability, nor has there been any government-sponsored research conducted to quantify those costs. Such a debate is perhaps not in keeping with the philosophy of the present government, which equates welfare with dependency. Yet in this case, there is a strong argument for welfare actually resulting in increased independence, given that if disability-related costs are not met, the cost of disability may make full participation in society cost-prohibitive for people with disabilities. Disability advocates claim that in the case of the costs of disability, the welfare system has a moral obligation to assist with the meeting of these costs irrespective of income. Otherwise, it is claimed, a person's discretionary income is depleted because of their disability. Again with the exception of the totally blind, the Invalids' Benefit has recently become more difficult to obtain, with stricter criteria relating to the capacity of a person with a disability now in place. A trial of work capacity testing of Invalids Beneficiaries is taking place at present. Work capacity testing is also a feature of the Accident Compensation and Rehabilitation Insurance Act 1992. This Act abolished the lump sum compensation component of the ACC regime as introduced in 1974, as well as placing a much greater emphasis on rehabilitation. This move somewhat addressed the disparity between those disabled by accident and those disabled as a result of a congenital condition or illness, but not in the way disability advocates wanted. It was hoped that the formerly more generous assistance available to ACC clients would have been mirrored in the provision of assistance to those disabled by means other than accident. It was felt that ACC was formerly much more accommodating in terms of equipment provision in particular, which sought to maximise the potential of their clients. Now, the scheme appears to have become less generous. The Disabled Persons Community Welfare Act 1975 has largely been repealed with the transfer of Disability Support Services to the Regional health Authorities and their successor. However, provisions still remain giving the Director General of Social Welfare jurisdiction over vocational services, day-care, and sheltered employment for people with disabilities. There are acts still on the statute books that people with disabilities consider are inconsistent with currently stated views on their role in society. The Disabled Persons Employment Promotion Act 1960 allows the government to exempt any provider of sheltered workshop services from any employment-related legislation. Disability advocacy groups view this legislation at best as an anachronism, and at worst as a breech of the spirit of the Human Rights Act and in need of repeal. The Royal New Zealand Foundation for the Blind Act 1963 formerly constitutes the Foundation. It provides that the Governor General may appoint four trustees to the 14 member board, the Minister of Education may appoint another, the Association of Blind Citizens of New Zealand appoints two, parents of blind children appoint one and the rest are appointed by committees of volunteers around the country. The Act, with its archaic wording, is merely a constitution and contains no provisions regarding any entitlement to funding on the part of the Foundation, or to the rights of blind people. Consumer organisations view it as antiquated, instead preferring the idea that blind people should elect the Foundation's governing body under an incorporated society structure. The fact that the government can appoint five members of an independent organisation and blind people can only elect two out of fourteen members, is not consistent with the rights-based approach that has permeated modern legislation or thinking on disability.48 As mentioned in Chapter 3, there are clauses within Acts specifically referring to people with disabilities in general, and others referring to people with a specific type of disability. Section 8 (j) of the Juries Act currently prevents "persons who are incapable of serving because of blindness, deafness, or any other permanent physical infirmity" from serving on "any jury, in any court, on any occasion". At time of writing, a bill which has been reported back from a Select Committee is likely to pass which would delete this clause and instead give discretion to judges to assess each juror with a disability based on their own ability and the particulars of the case. This is a further example of legislation being modified to reflect the equal status of people with disabilities in society. The Dog Control Act 1996 allows users of a guide dog, companion dog, or hearing dog to enter almost all public premises. The updating of this act was an important victory for people with disabilities other than blindness, who previously had no legal rights to take service dogs into any public facility where dogs in general were not permitted. The Copyright Act 1994 allows organisations providing services to people with print disabilities to provide copyrighted material in special formats without having to seek the permission of the copyright holder. The Building Act 1991 includes a clause requiring public buildings to be accessible to people with disabilities unless a specific exemption has been granted. The Electoral Act 1993 permits a blind person to take someone of their choosing into a polling booth to assist them with casting a vote. Vocational Programmes Like the Accident Rehabilitation and Compensation Insurance Corporation, vocational programmes for people with disabilities stand somewhat outside of the DSS framework. Like all other vocational programmes for people with disabilities, the specialist employment agency Workbridge is funded by the Community Funding Agency, an arm of the Department of Social Welfare. Responsibility for vocational programmes for people with disabilities will be transferred to Work and Income New Zealand in mid-1999, however they will still purchase services from Workbridge. Clients are often confused by the fact that vocational programmes are not part of the DSS framework. In some cases, there are overlapping programmes. For instance, a person who has obtained employment may receive a grant for specialised equipment from Workbridge's Job Plus scheme, or they may receive funding from the HFA. Both funds are capped, and demand considerably outstrips supply. There appears to be no formula in place that determines when it is appropriate for a person with a disability to seek assistance from Workbridge, and when they should go to the HFA. Government Policy There is considerable government policy which is not enshrined in legislation, but which nevertheless affects people with disabilities. All New Zealanders, and in particular all branches of government, are affected by the government's strategic result areas, which have recently been revised for the years 1999 to 2002. Of particular relevance to people with disabilities are the following goals: * We want to focus our social assistance in welfare and housing on those most in need. * We want to reduce the number of New Zealanders who need to rely on welfare. * We will support individuals and families taking responsibility for their well-being. * Our assistance will be focused so that we are not using high taxes to support high income New Zealanders.49 This certainly sends the signal that in no case should welfare be either universal or considered a necessary thing. The National Health Committee produces discussion documents and best practice guidelines of both a general and specific nature in the health and disability sectors. Originally, this committee was known as the Core Services Committee. It aimed to work out a method of determining what services the state would provide, so that the public could be clear about what they could expect from public provision of health and disability support services. In it's early work, it attempted to apply four key questions to stimulate public discussion of state provision of certain services. These were: * What are the benefits? * Is it value for money? * Is it fair? * Is it consistent with communities' values?50 Defining a core met with considerable concern and resistance from some members of the public and health and disability professionals. Eventually, this process was abandoned in favour of a more pragmatic approach that still advocates explicit decision making. The Committee has identified a number of important anomalies and issues requiring addressing in the disability area. For example, it published a useful discussion document discussing responsibility for purchasing health and disability services, highlighting the haphazard development of disability policy and the resulting inconsistency of many purchasing decisions.51 It has also consulted extensively with the disability sector, and provided comprehensive advice to government. The government's Special Education 2000 policy is having a major impact on the education of children with disabilities. One of the unique things about this policy is that it allocates a cash entitlement to be used for the purchase of education services. The amount allocated is based on whether a child's needs are deemed to be very high, high or moderate. Within those categories there is additional flexibility designed to ensure that the child receives the services required. It is too early to evaluate this programme, as it is still being introduced gradually. However, it is interesting to observe that unlike the health system there is much more flexibility relating to who can do the purchasing. It is possible for clusters of students' funds to be in control of a purchaser other than the default purchaser, which is Specialist Education Services. Local Government Local Territorial Authorities assist people with disabilities through measures such as house-bound library services and the purchase of cassette books for people with print disabilities which are included in public libraries. Frequent contact occurs between people with disabilities and local territorial authorities over issues surrounding the built environment, in particular street crossings. While there has been a tendency in the past for local territorial authorities to view people with disabilities as the responsibility of central government, increased advocacy on the part of people with disabilities has succeeded in raising awareness. For example, the Wellington Regional Council now has a Disability Advisory Group. Regional Councils administer the Total Mobility scheme, although some believe that this should be a central government responsibility. The Total Mobility budgets are often stretched. This has resulted in the establishment of advisory groups in many areas, on which people with disabilities, the taxi industry, and the Council are represented. There is now considerable variation in the level of subsidy available, and the criteria governing use of the Total Mobility system due to an explosion of demand. This is simply a symptom of people with disabilities becoming more mobile and visible in the community. There is however, some degree of abuse of the scheme by providers of disability support services who use the Total Mobility scheme to subsidise travel for clients. Understandably, regional councils are seeking to identify and eliminate this practice. International Law People with disabilities are protected by a number of United Nations documents with a rights focus. These include the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights. The International Postal Agreement of the Universal Postal Union also provides for free international postage of literature for the blind. Of particular importance is the United Nations' Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. The Rules were adopted by the General Assembly in 1993. Their development followed the rejection by the General Assembly in the late 1980s of the concept of a Convention on the elimination of all forms of discrimination against disabled persons. The United Nations, in work carried out on the Standard Rules, point out the important legal differences between the rejected Convention and the adopted Rules. Unlike a Convention the Standard Rules are legally non-binding. Covenants or Conventions constitute binding international law having been ratified by member states as also rules, that have become international customary law. The Standard Rules can attain binding character as "international customary rules, when they are applied by a great number of states with the intention of respecting a rule in international law." Until then, they serve as a "strong moral and political commitment on behalf of states to take action for the equalisation of opportunities." 52 This comprehensive document, to which New Zealand is a signatory, has rules covering the following: Rule 1. Awareness-raising - States should take action to raise awareness in society about persons with disabilities, their rights, their needs, their potential and their contribution. Rule 2. Medical care - States should ensure the provision of effective medical care to persons with disabilities. Rule 3. Rehabilitation - States should ensure the provision of rehabilitation services to persons with disabilities in order for them to reach and sustain their optimum level of independence and functioning. Rule 4. Support services - States should ensure the development and supply of support services, including assistive devices for persons with disabilities, to assist them to increase their level of independence in their daily living and to exercise their rights. Rule 5. Accessibility - States should recognise the overall importance of accessibility in the process of the equalisation of opportunities in all spheres of society. For persons with disabilities of any kind, States should (a) introduce programmes of action to make the physical environment accessible; and (b) undertake measures to provide access to information and communication. Rule 6. Education - States should recognise the principle of equal primary, secondary and tertiary educational opportunities for children, youth and adults with disabilities, in integrated settings. They should ensure that the education of persons with disabilities is an integral part of the educational system. Rule 7. Employment - States should recognise the principle that persons with disabilities must be empowered to exercise their human rights, particularly in the field of employment. In both rural and urban areas they must have equal opportunities for productive and gainful employment in the labour market. Rule 8. Income maintenance and social security - States are responsible for the provision of social security and income maintenance for persons with disabilities. Rule 9. Family life and personal integrity - States should promote the full participation of persons with disabilities in family life. They should promote their right to personal integrity and ensure that laws do not discriminate against persons with disabilities with respect to sexual relationships, marriage and parenthood. Rule 10. Culture - States will ensure that persons with disabilities are integrated into and can participate in cultural activities on an equal basis. Rule 11. Recreation and sports - States will take measures to ensure that persons with disabilities have equal opportunities for recreation and sports. Rule 12. Religion - States will encourage measures for equal participation by persons with disabilities in the religious life of their communities. Rule 13. Information and research - States assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and promote comprehensive research on all aspects, including obstacles that affect the lives of persons with disabilities. Rule 14. Policy-making and planning - States will ensure that disability aspects are included in all relevant policy-making and national planning. Rule 15. Legislation - States have a responsibility to create the legal bases for measures to achieve the objectives of full participation and equality for persons with disabilities. Rule 16. Economic policies - States have the financial responsibility for national programmes and measures to create equal opportunities for persons with disabilities. Rule 17. Co-ordination of work - States are responsible for the establishment and strengthening of national co-ordinating committees, or similar bodies, to serve as a national focal point on disability matters. Rule 18. Organisations of persons with disabilities - States should recognise the right of the organisations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognise the advisory role of organisations of persons with disabilities in decision-making on disability matters. Rule 19. Personnel training - States are responsible for ensuring the adequate training of personnel, at all levels, involved in the planning and provision of programmes and services concerning persons with disabilities. Rule 20. National monitoring and evaluation of disability programmes in the implementation of the Rules - States are responsible for the continuous monitoring and evaluation of the implementation of national programmes and services concerning the equalisation of opportunities for persons with disabilities. Rule 21. Technical and economic co-operation - States, both industrialised and developing, have the responsibility to co-operate in and take measures for the improvement of the living conditions of persons with disabilities in developing countries. Rule 22. International co-operation - States will participate actively in international co-operation concerning policies for the equalisation of opportunities for persons with disabilities. The Rules are clearly far-reaching, and a blueprint for disability policy. They are taken extremely seriously by organisations of people with disabilities throughout the world, who frequently refer to them in submissions to governments. In 1996, the United Nations published a report in which signatory states reported on compliance with the Standard Rules. New Zealand's Report was submitted by the Ministry of Foreign Affairs. The Report from New Zealand remarked on what the Ministry perceived to be an increasing willingness to accept the rights of people with disabilities. It did make some statements which, in the context of the Standard Rules, could be interpreted as some degree of non-compliance. Sign language for deaf people has no officially recognised status. It is neither used as the first language in education of deaf people, nor recognised as the main means of communication between deaf persons and others. While the Report makes this statement as a fact rather than referring to it as a problem, organisations of the deaf have been advocating for some time to have New Zealand Sign Language recognised as an official language of New Zealand alongside English and Maori. The New Zealand Report acknowledges that there are no legal provisions mandating the representatives of persons with disabilities to participate in policy-making and to work with governmental institutions. It does add however that organisations are often consulted when laws and regulations with a disability aspect are being prepared. It is certainly open to debate whether "often" consulting people with disabilities without any legal requirement to do so adequately complies with Rule 14 (2), which says, "States should involve organisations of persons with disabilities in all decision-making relating to plans and programmes concerning persons with disabilities or affecting their economic and social status." New Zealand's contribution was unable to put any positive spin on the fact that "Persons with disabilities participate to a very limited extent in government, legislature, the judiciary, political parties and NGOs". Perhaps most indicting of all is the admission that New Zealand has no co-ordinating body on disability policy. 53 There are important errors of fact in New Zealand's submission prepared for this Report. For example, the Report claims that the umbrella group the Assembly of People with Disabilities (DPA) does not represent organisations, whereas in fact it has a corporate membership structure and actively recruits organisations both of and for people with disabilities. Such errors of fact are perhaps a symptom of the lack of a co-ordinating body which, had it existed, would have prepared the report to the United Nations based on day-to-day experience with the subject matter. For example, the report from the United States was prepared by their co-ordinating body, the National Council on Disability. NGOs representing people with disabilities have also prepared reports on compliance. The only such report mentioning New Zealand is that produced by the World Federation of the Deaf (WFD).54 There are inconsistencies between the state of disability policy in New Zealand as reported by the government, and the contribution of the Deaf Association, New Zealand's WFD member organisation. Among the more notable discrepancies are the fact that the Deaf Association reports that Sign language for deaf people has no officially recognised status, but is recognised as the main means of communication between deaf persons and others. However, the government actually paints a less positive view in this instance, saying that sign language for deaf people is not even recognised as the main means of communication between deaf persons and others. The Deaf Association reported that there are no government measures to encourage media and other forms of public information to make their services accessible for persons with disabilities. According to the government, there are such measures. The Deaf Association said that literature in Braille/tape, news magazines on tape/Braille, sign language, and easy readers are not automatically provided. Some government departments, however, may provide some of these services, the provision being done at their discretion. According to the government, all of the above mentioned services are provided in order to facilitate information and communication between persons with disabilities and others. Conclusion These last two chapters have demonstrated that there is no clear set of unifying goals governing public policy for people with disabilities in New Zealand. Because of this, many contradictions exist, for example, the Special Education system allows for the creation of alternative budget holders to the default, whereas adults only have the choice of one budget holder, the Health Funding Authority. The private sector is expected to comply with comprehensive Human Rights law, but the government has abandoned plans to ensure it conforms. Blind people can receive assistance with the extra costs of disability irrespective of earned income, whereas the government wishes to get everyone else off welfare. The government wants to consolidate disability support services, but is setting up parallel and duplicative needs assessment systems. The government wishes to promote independence, but requires someone other than the individual with a disability to validate the person's needs before they can access services. New Zealand's policies towards disability are scattered through a number of acts, policies, and government departments. Many would say that this is an inevitable outcome of the mainstreaming of people with disabilities, and needn't be perceived as a bad thing. Yet what is of concern is that there is no overall strategy or statement of beliefs, which guides the various arms of government making disability policy to seek consistency. No unifying set of principles is applied to the state sector at large. Without such a vision, there can be no measurement of whether government as a whole is effectively meeting the needs of, and its obligations to, people with disabilities. Chapter Six USING BENCHMARKS "For generations, society has viewed people with disabilities as citizens in need of charity. Through ignorance we tolerated discrimination and succumbed to fear and prejudice. But our paternalistic approach did no more to improve the lives of people with disabilities than labour laws restricting women in the workplace did to protect women. Today we are shedding these condescending and suffocating attitudes - and widening the door of opportunity for people with disabilities... People with disabilities are here today to remind us that equal justice under the law is not a privilege but a fundamental birthright in America". Senator Ted Kennedy, during the Senate's passage of the Americans with Disabilities Act July 13, 1990. Introduction The preceding chapters have demonstrated progression on the part of people with disabilities towards equality of opportunity. Yet like other minorities who have been subjected to long-term discrimination, key statistics still make grim reading. People with disabilities are over-represented in the unemployment and low socio-economic statistics. Access to basic rights, such as freedom of movement and access to public information is still impeded significantly. Despite, or in some cases because of, the DSS framework, people with disabilities feel that they are not able to take full control of determining what support services they need, who should provide them, and where. In short, there are many important issues affecting the lives of people with disabilities under the jurisdiction of many government departments. Such departments have no common understanding of either the needs of people with disabilities, or the obligations the departments ought to have towards them. This is in marked contrast to the welcome comprehension of their obligations to Maori. This situation must be remedied. Through Human Rights legislation and international law, the government has obligations to any minority to facilitate equality of opportunity not only through its own practices, which should be exemplary, but also by taking measures that affect society as a whole. A rights-based approach requires a further shift in focus from charity and caring to enablement. Unlike most western countries, there is no committee co-ordinating government's disability policy, and monitoring compliance with that policy. The comparative lack of co-ordinated programmes to tackle this inequality may perhaps be due to the fact that people with disabilities are one of the few significant minorities in New Zealand whose needs are not expressed by a member of that minority in Parliament. This is in itself an indictment of the environment that has not yet seen such representation occur with the exception of the well-connected, adventitiously blinded Sir Cluther McKenzie. This chapter suggests a means of improving the co-ordination, quality and outcomes of public policy on disability, and provides justification for the recommendations based on principles of justice and human rights. Specifically, it makes a case for the setting of a series of benchmarks for equality of opportunity of people with disabilities. The benchmarks would apply to all government departments, and would give a clear, consistent direction to government for its disability policy. What are Benchmarks? The prioritising and creation of public policy is being influenced by the use of benchmarks in a number of states in the USA. They are also known as indicators, or vital signs.55 This better distinguishes them from the term "benchmarking" which refers to the searching out of best practice through the examination of similar organisations. Of course, best practice is a useful tool in assisting with the construction of benchmarks. Benchmarks, then, are agreed measurements by which progress towards a given goal can be ascertained. They tend to be quantitative, but they can also be qualitative if appropriate research techniques are employed. These benchmarks, or indicators, answer the question, "what do we need to measure in order to determine progress towards our ultimate goal"? Oregon is a particular trailblazer in this area. The Oregon benchmarks are "the measurable indicators that Oregon uses at the state level to assess its own progress toward broad strategic goals." . . . Just as blood pressure, cholesterol levels . . . serve as signs of a patient's health, benchmarks serve as a sign of Oregon's social, economic and environmental well-being," says the Progress Board. It developed the benchmarks to measure the state's progress in moving toward the goals outlined in Oregon Shines. 56 The benchmarks set interim and final targets to the year 2010. In the Oregon case, the benchmarks are easily measurable, such as the number of people with certain qualifications. Widespread public support for the benchmarks is deemed vital to their success. It would be easy, and perhaps even tempting, for benchmarks to be created which pursue the ideological position of the administration of the day. However, the Oregon benchmarks have received remarkably strong support from politicians of all persuasion. The public have also been involved in the construction of the benchmarks through focus groups and other consultation tools. An apparently important characteristic of setting benchmarks is that they are frequently reviewed and adjusted where necessary. In Florida, a Quality of Life Index is regularly reviewed by a committee for progress and relevance. A further inspiration for the constructing of benchmarks for disability policy is the work of Daniels, Light and Caplan in their design of benchmarks of fairness in health care reform. In a detailed project that was developed over some years, the authors explain what they mean by fairness, devise ten benchmarks with criteria by which satisfaction of these benchmarks can be measured, and finally develop a matrix for giving a score based on the benchmarks to health care reform proposals.57 Foundations of the Benchmarks The Preamble to the United Nations' Standard Rules on the Equalisation of Opportunities for Persons with Disabilities defines equalisation of opportunity for the purposes of the Rules as: The process through which the various systems of society and the environment, such as services, activities, information and documentation, are made available to all, particularly to persons with disabilities. 58 It goes on to say, The principle of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation. 59 The UN also makes it clear that equality of opportunity includes expectations as well as rights. As persons with disabilities achieve equal rights, they should also have equal obligations. As those rights are being achieved, societies should raise their expectations of persons with disabilities. As part of the process of equal opportunities, provision should be made to assist persons with disabilities to assume their full responsibility as members of society. 60 The direct, unequivocal language used throughout the Rules is in stark contrast with New Zealand government policy, which often attaches provisos relating to cost and reasonableness to equality of opportunity for people with disabilities. However, the UN's message is clear. People with disabilities are entitled to equality of opportunity. Implicit in these statements is the view that equality of opportunity is no more discretionary for people with disabilities than it is for any other group. Governments will always be under pressure from many interest groups, many of whom are better understood and supported by the public. Where significant extra spending has been allocated, this has occurred in areas where there is a strong lobby, extensive media interest, and/or a perceived danger to the public if action does not take place. The vast increases in funding for those with psychiatric disabilities is an example of an issue that meets all of these criteria. This is not in any way to suggest that there has not been an historical under-funding and a need for increased funding due to deinstitutionalisation. But this example demonstrates that often when action is taken, it is taken to avoid political consequences. There are other groups within the disability sector that could be considered equally under-resourced, but the consequences of inaction are not as potentially harmful to the public. This will continue to occur, perpetuating unfairness, unless there is a consistent theme and a set of agreed objectives driving disability policy. There has been little effort made to engage the disability sector and the public at large in wide ranging discourse about the obligations government has to people with disabilities in a just society. While independence is an often-stated goal of public policy on disability, it is stated very much with an economic caveat. The prevailing philosophies inherent in New Zealand social policy would also suggest that the primary definition of independence relates to the absence of the need for state assistance. No room appears to be made for the view that state assistance can foster the individual's independence from the assistance of other individuals in going about regular daily tasks. Official policy on independence also fails to acknowledge the now prevailing view that to a large extent it is society that disables an individual. This is not to say that rehabilitation is not essential, but all the rehabilitation services in the world will not permit a person with a significant physical disability to climb the stairs, or a blind person to read the morning newspaper. Permitting the use of alternative techniques allowing a person with a disability to achieve these ends requires the creation of an inclusive society. Obligations of a Just Society In Rawls' "Theory of Justice" he considers the qualities society must possess if justice is to be accorded to all. In his view, a just society involves an equitable distribution of goods. "Goods" in Rawls' work is defined broadly, and encompasses what one might reasonably aspire to have, such as wealth, position, opportunity, skill, liberty, and self-respect. How such goods are distributed in a just society will depend on what principles of justice are reflected in the system of rights, laws, processes, and positions that constitute the society as a functioning political entity. In his writings on the fashioning of principles of justice, Rawls uses a hypothetical process of negotiating under a veil of ignorance. He states that the only rational outcome for someone taking part in such negotiations is to rationally agree to live by them, realising that one might be society's least advantaged individual. This is because, whilst negotiating under the theoretical veil of ignorance, there is no way of telling whether one is in fact that least advantaged individual. Through continuing the process of negotiation to cover the distribution of goods, Rawls arrives at two principles of justice. The first concerns liberty, the most fundamental of goods. It states that each person is to have an equal right to the most extensive total system of equal basic liberties compatible with a similar system of liberty for all. The second concerns the distribution of other primary goods, and is known as the "difference principle". It states that social and economic inequalities are to be arranged so that they are both (a) to the greatest benefit of the least advantaged, and (b) attached to offices and positions open to all under conditions of fair equality of opportunity. Rawls accepts that if the least advantaged in society benefit from a decision about the distribution of goods, then chances are that others who are more advantaged will also, although this is not essential. The primary motivating factor is that as self-interested human beings who in this hypothetical exercise are not aware of their own personal circumstances, they will negotiate in self-interest, knowing that the least advantaged person might be themselves. Rawls's just society also requires application of a principle of redress. This corrects for inequalities that arise from unexpected events such as congenital conditions.61 Clearly, this is a very different perspective from the utilitarian approach that has been so prevalent in legislatures in modern times. Utilitarians would be more inclined to focus on what maximises the satisfaction or happiness of the largest number of people rather than reach a conclusion based on any other concept of justness. But it is possible to argue from a utilitarian perspective that because we satisfy our most important needs and desires with our first dollars, appropriating more money to benefit twenty percent of the population with clearly identifiable below average outcomes, satisfies the utilitarian goal of maximising utility. There appears to be some degree of consensus among most philosophers about very broad principles of justice. As Barret points out in the report of the Royal Commission on Social Policy, The general meaning of justice in all contexts is, most philosophers agree, to each according to their due. The just state of affairs then, is one in which each individual has exactly those benefits and burdens that are their due by virtue of personal characteristics and circumstances. 62 This is consistent with Rawls's view of a just society. Miller also has three principles to assist in determining one's due. * To each according to their rights. * To each according to their deserts. * To each according to their needs.63 On the first principle, we have clear guidance from New Zealand and international law, where the rights of people with disabilities are clearly enunciated. To some extent, rights and deserts overlap. Given that equality of opportunity is a fundamental human right enshrined in national and international law, a person with a disability deserves to have that right upheld. Much work has been done in recent years to assist government in being clearer about the needs of people with disabilities, and the government has acknowledged that the needs assessment system is identifying more needs than can be met given the economic parameters they have set. This means that people with disabilities are dependent on charitable giving for the meeting of some of their essential needs. There is a growing understanding of the fact that charity has negative societal consequences. When a "big picture" approach is taken to the delivery of disability support services, making essential services dependent on charity may be false economy. People with disabilities currently compete with starving children in Africa, Lotto tickets, and a night out at a restaurant for some of the services that are essential for not only their full participation in society, but also their safety. For example, 75% of adult rehabilitation services provided to blind adults are funded from charitable giving.64 Those responsible for raising funds from the public in such a tough market often feel compelled to resort to images of people with disabilities that re-enforce the stereotype of helplessness and pity. People with disabilities are infrequently portrayed as competent, employable people with the "can do" attitude asked for in so many job advertisements. The re-enforcing of these stereotypes, while motivating people to give to a "good cause", lessens the likelihood of a person with a disability gaining acceptance in society as someone who is capable of full participation.65 Not only is the economic argument powerful, but the dependence of people with disabilities on charity for essential services is morally questionable. As Barret points out, It can be argued that having rights, of some sort, is essential to individual dignity and self respect. Receiving care as a matter of right is distinctly different from receiving care as a charity. While we all have moral obligations to be charitable, nobody can claim a right to our charity, and we can expect the recipients of our charity to be grateful. Nobody is required to be grateful for receiving that to which they have a right because it is both proper and fitting' that they should have it.66 It may be argued that people with disabilities, like anyone else in New Zealand, have their basic needs catered for, and that on that basis any justification of further guarantees can not be made with a needs or rights justification. However, the question of what constitutes a basic human need is one which has caused considerable debate. Townsend states, What is unsatisfactory about conventional definitions of basic human needs is that they have been interpreted as purely physical, for food, shelter and clothing, rather than as social; yet: the critical fact about human beings is that they are social beings rather than physical beings. It is their social relationships and their social roles, as parents, partners, neighbours, friends and citizens, which govern and define their needs. They are also actors and producers and not only consumers ... Deprivation cannot be engraved on stones like an historical benchmark. Deprivation is relative to the society of which people find themselves members. To understand and identify the kinds of deprivation and hence harm people experience, a full account has to be given of the roles which people are expected to play, the obligations which they are expected to share, and enjoy as citizens. By registering and maintaining a concern with these matters, it is possible to remain in touch with the changing nature and extent of deprivation and poverty.67 If we concur with Townsend's extended definition of basic human need, then it may be argued that complying with the benchmarks to be detailed in Chapter 7 is essential in order to meet the basic human needs of people with disabilities. These requirements are based on human rights and social justice. They are too important and have too high a moral status to be dependent on the economic climate, individual effort, political whim or luck. New Zealand played a significant role in the formulation of the United Nations Declaration of Human Rights in 1948. This too offers guidance as to what all citizens, people with disabilities included, have the right to expect. Of particular relevance is: article 1 (the right to equality); article 21 (2) (Everyone has the right to equal access to public service in his country); article 22 (Everyone, as a member of society, has the right to social security and is entitled to realisation, through national effort and international co-operation and in accordance with the organisation and resources of each state, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality); article 23 (1) (Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment); article 25 (1) (Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control); article 26 (1) (Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit); article 27 (1) (Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits). The United Nations' Standard Rules for the Equalisation of Opportunities for Persons with Disabilities, discussed in Chapter 5, provide much useful material for the setting of benchmarks. New Zealand's own Human Rights Act and stated government objectives also provide assistance. Addressing the inequality of opportunity of people with disabilities is a matter requiring urgent attention due to demographic factors. Many disabilities are acquired adventitiously, and in particular with the onset of old age. Not only is the average age of New Zealand's population going to increase over the next 30 years, but older people are likely to live longer due to advances in medical technology.68 It is therefore likely that the number of people with disabilities will increase substantially in the next couple of decades. Furthermore, the new generation of elderly people with disabilities will have come from a generation of assertive consumerism and with a strong focus on rights. Principles of justice aside, there is certainly an urgent need to reach a consensus about policy for people with disabilities lest a large number of the population eventually finds itself excluded from society. Conclusion New Zealand is at an important policy cross-roads. On the statute books, the law is now clear that people with disabilities are equal citizens. Yet much has to be done to change practices and attitudes to give practical effect to these recently won rights. By having benchmarks against which policies of all government departments can be measured, the degree to which progress is or is not taking place in achieving equality can be determined. The long-term goal of these benchmarks must be to take New Zealand to a point where disability does not prevent people from maximising their potential. At this point, equality of opportunity for people with disabilities will not be seen as additional, often unwanted cost. Instead, it will just be seen in the same way as making a building safe, making a book readable, or making education relevant. Irving Zola said, ...an exclusively special needs approach to disability is inevitably a short-run approach. What we need are more universal policies that recognise that the entire population is "at risk" for the concomitants of chronic illness and disability....Without such a perspective we will further create and perpetuate a segregated, separate but unequal society-a society inappropriate to a larger and older "changing needs" population.69 Chapter Seven THE BENCHMARKS Introduction Having established the historical and philosophical basis for the need to foster equality of opportunity for people with disabilities, the following are the proposed benchmarks for use throughout the state sector. They have been devised after taking into account the government's international and legislative obligations, and in particular the United Nations' Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. They have also been refined with the assistance of a number of people from the disability sector. Two questionnaires were sent by e-mail to a range of people with an interest in disability issues. The first was accompanied by relevant material, such as the United Nations' Standard Rules. Participants were invited to comment on what they thought needed to be measured in order to assess progress towards equality of opportunity. After responses were received to this questionnaire, the original set of benchmarks was drafted. This was then circulated to a slightly larger group of people with an interest in disability issues. They were invited to comment on whether they thought anything was missing from the benchmarks, whether anything needed to be altered, and whether anything should be deleted. This resulted in a number of changes, culminating in the final version of the benchmarks included in this thesis. The Standard Rules are a comprehensive list of requirements with which states must comply in order to ensure equality of opportunity for people with disabilities. This set of benchmarks in no way seeks to duplicate or replace this important document. Rather, they complement the Standard Rules. They answer the question, "How do we know if we're doing any better at equalising opportunity for people with disabilities?" By measuring proposed or existing policy against these benchmarks, policy makers can determine the degree to which a policy promotes equality of opportunity. All of the benchmarks are considered equally important if equality of opportunity is to be realised. A different approach has been taken from that used in the United Nations' Standard Rules. The UN divided their rules into clear sections: preconditions for equal participation; target areas for equal participation; implementation measures; and monitoring mechanism. In the case of the benchmarks detailed in this chapter, the major heading for each benchmark constitutes a precondition for equal participation. Under each heading is a series of points that constitute means by which progress towards that precondition can be measured. Monitoring mechanisms will be discussed at the end of this chapter. When policy is being devised, the policy that makes the most progress in the greatest number of areas is considered the best option in assisting in progress towards equality of opportunity for people with disabilities. After circulating drafts of the benchmarks to people in the disability sector, a strong message was received that the benchmarks should not solely be quantitative. There was a view that policy makers tend to shy away from issues they cannot turn into a number, and that this tendency in part explains why important moral and quality of life considerations are not being addressed to the satisfaction of people with disabilities. For this reason, quantitative measures have been used where practicable, but qualitative measures have also been included. This means that when some policy is being designed, it may be necessary for policy makers to use tools such as surveying or focus groups to assess the extent to which a proposed policy would comply with some of the measurement criteria which have a qualitative focus. Through the use of such tools, a picture will be built up over time of whether progress is being made towards achieving the qualitative criteria. Unlike the UN Standard Rules, these benchmarks do not deal directly with specific operational matters in key policy areas such as education and employment. They are instead designed to be overarching strategic indicators, which, if applied, will improve outcomes in these specific areas through changes in operational policies. List of Benchmarks and Measurement Criteria 1. Equality in Law 1.1 The percentage of legislation that negatively discriminates against people with disabilities. 1.2 The percentage of legislation which positively discriminates in favour of people with disabilities. 1.3 The percentage of legislation whose provisions are not applied to people with disabilities. 1.4 The degree to which people with disabilities have access to legal redress when discrimination occurs. 2. Self-determination 2.1 The percentage of policy formulation and review in which people with disabilities participate. 2.2 The percentage of people with disabilities in positions influencing the development and implementation of policy. 2.3 The percentage of disability programmes purchased by government operated and controlled by people with the disability for which the programme is intended. 2.4 The degree to which people with disabilities are empowered to make informed decisions about the services that best meet their needs. 3. Independence 3.1 The number of people with disabilities resourced to achieve independently as many of the outcomes that a non-disabled person would expect to achieve independently, to the maximum extent that the impairment permits. 3.2 The number of people with disabilities who are economically independent of the state for expenditure that is not disability-related. 3.3 The number of people with disabilities dependent on charitable giving for the funding of services essential for their independence and full participation in society. 4. Universal Access 4.1 The percentage of the built environment that is universally accessible. 4.2 The number of public transport vehicles and facilities that are universally accessible. 4.3 The percentage of published information that is universally accessible. 4.4 The percentage of content in the electronic media that is universally accessible. 5. Compensation for the Costs of Disability 5.1 The degree to which a person's discretionary income is depleted because of direct and indirect disability-related costs. 6. Diversity 6.1 The degree to which policies take account of the unique needs of different disability groups. 6.2 The degree to which policies are flexible enough to recognise the unique needs of each individual. 6.3 The degree to which Maori have access to disability support services delivered in a culturally appropriate manner. 6.4 The degree to which policies recognise the double disadvantage of women and ethnic minorities with disabilities. 7. Best Practice 7.1 The percentage of expenditure on policy development on disability policy relative to other policy areas. 7.2 The percentage of expenditure on pilot programmes in the disability sector relative to other areas. 7.3 The percentage of policy development which takes account of the needs of people with disabilities during the formulation and piloting process. 8. Inclusive Society 8.1 The degree to which society is accepting of people with disabilities in all its practices and institutions. 8.2 The number of complaints of disability-related discrimination lodged by people with disabilities. 8.3 The degree to which the non-disabled public understand the capabilities and rights of people with disabilities. 9. Co-ordination 9.1 The degree to which unnecessary duplication of resources occurs. Explanation of the Benchmarks 1. Equality in Law. While a statute cannot change attitudes overnight, legislation that promotes equality of opportunity, or conversely legislation that discriminates negatively against people with disabilities makes significant moral statements about the place of people with disabilities in society. It is important that all legislation be assessed for the degree to which it facilitates equality of opportunity. For example, equality of opportunity is not served by statute books which on the one hand say that discrimination against people with disabilities is illegal, but on the other hand place a blanket ban on all people with disabilities from serving on any jury. It is also important to emphasise that positive discrimination will in many cases be appropriate in order to compensate for past inequality. The Human Rights Act expressly provides for positive discrimination to occur without contravening its provisions, yet there appears to be widespread confusion within government circles about this.70 It is therefore felt desirable to state this explicitly as a measurement criterion. These benchmarks should be reviewed regularly, and there may well come a point where positive discrimination is no longer considered necessary. It is also important to ensure that people with disabilities are not denied rights guaranteed to other citizens in law, such as the right under the Bill of Rights Act 1990 to seek and impart information in any form. It could be argued that for a deaf or a blind person to use this right to insist on a sign language interpreter or Braille respectively is unreasonable due to cost issues. Yet a law guaranteeing certain rights or freedoms to citizens should apply to every citizen in a just society. 2. Self Determination There are many influences which have led to the devising of this benchmark, the most important of which is of course the advocacy of people with disabilities themselves. The phrase "nothing about us without us" is often used by people with disabilities to summarise the way they feel about the past history of having things done to them without any input. This was a theme that came through strongly in the report of a 1993 Core Services Committee consensus conference on "Disability Client Orientation".71 The concept of self-determination has been at the heart of the formation of consumer organisations and self help groups. A further inspiration for this benchmark is the government's policy towards Maori. It is widely recognised that Maori not only must be consulted on decisions affecting them, but that outcomes are likely to be more appropriate and effective when policies receive broad support, and when programmes for Maori are delivered by Maori. People with disabilities tend to be treated differently from other minority or disadvantaged groups on which the government has specific policies, in terms of the degree to which it is deemed appropriate for a person who is not a member of the group in question to make policy on behalf of that group. It is theoretically possible for a man to be the Chief Executive of the Minister of Women's Affairs, or for a Pakeha to be the Chief Executive of Te Puni Kokiri. Whether those groups would deem such a turn of events acceptable in the current environment is another matter. Yet there are very few people with disabilities actively involved in policy making, and no people with serious disabilities in Parliament. The pursuit of self-determination therefore must be monitored closely and encouraged actively. The benchmark refers deliberately to policy, rather than just disability policy. This reflects the views of people with disabilities that society disables people. On that basis, people with disabilities have a voice that must be heard when all policy is being developed. One of the dilemmas associated both with this benchmark, and Benchmark 3 on independence, is that there are some people who will be unable to exercise their rights to self-determination or independence by virtue of their disability. This includes some people with intellectual, psychiatric and age-related disabilities. Legal measures currently exist governing issues of guardianship. Matters pertaining to the ability or otherwise of a person to make their own decisions are dealt with on a case by case basis. Traditionally, attitudes about disabilities have ensured that society has erred on the side of disempowerment. The danger of including a proviso clause to accommodate these situations is that it may be used inappropriately given the limited societal expectations of people with disabilities. The matter of trying to find principles that can be applied to determine an individual's ability to be self-determining is a highly complex one, and a matter for an entirely separate work. 3. Independence This benchmark covers physical independence in criterion 3.1, economic independence in 3.2, and independence from charity for essential tasks in 3.3. The term "independence" is used currently in most government policy to refer to independence from the welfare state. The measurement criteria for this benchmark make it clear that the government may in fact need to invest in the physical independence of an individual. For example, a person is likely to feel very much more independent if they have the means to travel to a destination without having to rely on family or friends. The government may well feel that family, local communities and charities have a role to play in assisting with such work, hence the inclusion of criterion 3.3. As discussed in Chapter 6, dependence on charity for the meeting of essential needs is inconsistent with a rights-based approach. This benchmark also takes account of the disabling elements of an impairment which society has the power to change. Given the correct environment, many impairments need not be disabling at all, hence the inclusion of criterion 3.1. Economic independence has been included, because only through increased purchasing power will people with disabilities be able to exert their influence in the marketplace, creating demand for appropriate and accessible goods and services. Economic independence is also a goal to which most adults quite reasonably aspire. 4. Universal Access This benchmark goes to the heart of the notion that people with disabilities are disabled by society's unwillingness to accommodate them. It is fundamental to the full participation of people with disabilities in society, and can arguably be considered a basic human need, particularly if the validity of Townsend's extended social definition of human need is accepted. The topic of what constitutes accessibility is detailed enough to warrant an entirely separate study. Indeed, a comprehensive ESCAP report has been produced on this very topic.72 However, it is appropriate to give some examples of each criterion. This is an indicative list and is by no means complete. For the built environment to be accessible, steps must be taken to address the accessibility of facilities by those with physical disabilities. This includes automatic doors, ramps, lifts, and lavatory facilities. Much of these provisions are well covered in current legislation. For the vision impaired, colour contrast and lighting is important. For the totally blind, Braille and talking signs and talking lifts are examples of what constitutes accessibility. For the hearing impaired, a hearing loop can make a major difference to being able to interact with people in the built environment. Another part of the built environment is our roads. Pavements and street crossings are relatively accessible at present for people with physical disabilities. New Zealand Standard 4121 stipulates a standard for the height of curb cuts which ensures that they are sufficiently low for wheelchair users, while pronounced enough to give blind people information about when they are no longer on the pavement. Audible and tactile traffic signals are not universally available, and the noises the audible signals make vary, as there is no implemented standard. Nor are tactile markings for the blind at street crossings and other potential danger areas universally available or used in a standard fashion. The degree to which public transport is accessible is not only an important practical matter for people with disabilities, it is a statement about their place in society. As one submission to the Irish Commission on the Status of People with Disabilities put it, "Public transport means that when you are disabled you are no longer a member of the public." 73 Without access to public transport, many people with disabilities are either prohibited from participation in many walks of life, or their cost of living is higher. To make public transport accessible, access for people with physical disabilities must be taken into account with low floor busses and trains. Signs must be clear and with good colour contrast for the vision impaired. For the blind, a loud speaker should announce the location of the next stop, and the destination at the time passengers are boarding. The accessibility of information involves making material available in alternative formats to print for blind people and others with print disabilities. These alternative formats include: Braille, cassette, computer disk, the Internet, and large print. A number of countries also provide important material in an easy to read format for those with intellectual disabilities. The accessibility of the electronic media relates primarily to those with sensory disabilities. For the deaf, this can include sub-titling of television programmes, which occurs already to some extent, or the use of a sign language interpreter. In the USA, the blind have access to a service called "audio description". This allows extra description of television programming to be switched on. It is done in a way that does not interfere with the existing dialogue in the television programme. The Internet is our newest form of media. With the aid of assistive technology, it can make much information readily available to people with disabilities which may have previously required assistance from others to render it accessible. Accessibility of the Internet involves captioning of audio for the deaf, and the use of HTML ALT tags and appropriate lay-out for the blind. 5. Compensation for the Costs of Disability As discussed in Chapter 3, the question of income maintenance is one which currently vexes and divides the disability sector. Although subject to some anomalies, blind people enjoy a provision in the Social Security Act allowing them to receive the Invalids' Benefit irrespective of their earned income. Everyone else, as well as the blind, are entitled to a Disability Allowance, but this is means and income tested. The Allowance serves as an acknowledgement of the extra costs of disability, but it is only available if a person does not have sufficient means to meet the cost of their disability any other way. People with disabilities certainly question the justice of this concept, and disagree with the government's view that welfare and independence are mutually exclusive. If the government does not compensate for the costs of disability, then a person with a disability is financially penalised. Their discretionary income is depleted because of their disability. To provide a more anecdotal example, it means that two people performing the same kind of work, one of whom has a disability and the other of whom does not, are not equally able to enjoy the fruits of their labour, since there are disability-related costs incurred by the person with a disability over which there is no discretion. Thus not addressing this leads to horizontal inequity. Certain factors that may be discretionary for a person without a disability are less so for people with a disability who wish to be independent. For example the cost of accommodation in urban areas is more expensive, yet urban areas have better public transport facilities as well as easier access to shops and medical facilities. The Disability Survey confirms that a larger number of the population of people with disabilities live in urban dwellings than do the population at large.74 The benchmark also covers the non-financial costs of disability. The cost of lost leisure time because of the extra time it may take to complete tasks, potential marital strain due to the imbalance of tasks, and lost opportunity because of attitudinal barriers are all very real. 6. Diversity While people with disabilities have a common history of paternalism, unemployment and discrimination, each disability group has its unique history, culture, needs and communication methods. While there was a strong emphasis during the design of the DSS framework on not unduly putting labels that derived from a medical diagnosis on people, the tide has somewhat turned. As the Steering Committee on Implementing the Coalition Agreement on Health discovered, there was concern throughout the sector that things had become too generic. There was also concern expressed by those consulted by the Steering Committee that the DSS framework was failing to take into account that not only is there diversity in the sector, but that there is also considerable diversity among people with the same disability. The needs of Maori when receiving disability support services warrant particular scrutiny. Services that are delivered in a manner that takes account of cultural appropriateness are likely to be used more and to achieve the outcome sought. Further, the rate of disability among Maori under sixty five is higher than the non-Maori population and thus warrants special attention.75 7. Best practice A number of people reviewing drafts of the benchmarks raised concern about the constant adjustments being made to policies affecting people with disabilities after their implementation. While careful evaluation and response to identified problem areas is appropriate, it is felt that the need for constant tinkering could be reduced if there was more piloting of disability programmes, and research to examine what has worked internationally. Respondents who expressed this view hoped that by including best practice as a benchmark, policies affecting people with disabilities would be less driven by whim and ideology. Thus the frequency of major policy shifts would decrease, minimising disruption. It is also important to measure the degree to which the needs of people with disabilities are taken into account when any policy is being developed, given that people with disabilities are not just affected by disability policy. 8. Inclusive Society As discussed when elaborating on Benchmark 1, legislation cannot force attitudinal change. Therefore it is important to include a benchmark which examines the degree to which people with disabilities are accepted by society as a whole. The number of complaints by people with disabilities alleging discrimination on the grounds of disability is one way of measuring the degree to which people with disabilities perceive that they are included in society. Of all the new grounds of discrimination made illegal by the Human Rights Act 1993, disability has received the most complaints. While some complaints may of course be vexatious, measuring the number of complaints at least provides some measurement of the acceptance of people with disabilities in society. 9. Co-ordination It could be suggested that this benchmark has nothing to do with equality of opportunity. However, it has been considered appropriate to include this because of the reality of the almost unlimited steps that could potentially be taken to improve equality of opportunity, and the limited resources to put the measures into effect. If there is a lack of co-ordination leading to unnecessary duplication of programmes and/or the application of resources, this certainly does not advance equality of opportunity, and when opportunity cost is taken into account, may in fact hinder it. When reading the United Nations' evaluation of the implementation of the Standard Rules for the Equalisation of Opportunities for People with Disabilities, it was apparent that most countries with which New Zealand likes to compare itself had some kind of co-ordinating committee on disability issues. Indeed, Standard Rule 17 expects this to happen, and was one of the rules chosen for particular scrutiny during the implementation review. Australia co-ordinates disability policy through its Disability Programme's division of the Department of Family and Community Services. Its stated mission is, "To assist people with disabilities to participate in community life as equal citizens". Within that Division are three distinct units. The most important for the purposes of this benchmark is the Commonwealth Office of Disability. Its purpose is, "To advise the government, through the Minister for Family and Community Services, on strategic policy issues relating to the needs, aspirations and concerns of people with disabilities. It also works to promote the images and capabilities of this sector of the community." 76 Another Example is the United States, which, while having a number of committees on specific disability issues, has a co-ordinating body, the national Council on Disability. The Council publishes reports, some which reach the President's desk, on disability issues. Consultation with the sector is frequent. One of the effects of the current manner in which the public sector operates, is that government departments are extremely conscious of lines of demarcation, and budgetary impact. The wider public good can sometimes be obscured by budgetary imperatives and the desire to shift costs where possible. As was outlined in Chapter 4, Difficulties with "interface" issues have prevented crucial disability-related programmes from being implemented, and in fact still are doing so. For this reason, duplication and ambiguities must be addressed. Monitoring and Evaluation There are two components to effective monitoring of the benchmarks - monitoring progress towards achieving their goals, and monitoring the effectiveness of the benchmarks themselves. American experience has demonstrated the importance of a sense of public ownership and a process for regular review of policy benchmarks. In the Quality of Life Index project in Florida, a report is produced annually which outlines progress on the benchmarks and the criteria set under each benchmark. A red flag symbol is placed alongside areas where either progress has not been made or the situation has deteriorated. A gold star symbol is used to signify commendable progress. 77 In the case of the benchmarks just outlined, people with disabilities would need to evaluate them regularly, and make adjustments where necessary. The performance of all arms of government should be measured against the degree to which they have assisted in developing policies consistent with the benchmarks. Compliance with the direction outlined should be a key result area in the contracts of all chief executives of government departments and entities, with red flags and gold stars affecting remuneration. Conclusion On July 18 1995, President Bill Clinton of the United States felt that his country had made sufficient progress for him to offer the following remarks, America is reaping the benefits of a more inclusive society. Employers have a larger pool of qualified workers. Businesses are opening doors to new customers. State and local governments are enjoying broader citizen participation. Most important, individuals are being judged not by their disabilities, but by their abilities. There is ample economic justification contained even in that small statement to motivate policy makers to implement the benchmarks listed above. Unemployment and marginalisation are social costs. Employment and inclusion are social benefits, advantageous to society as a whole. Yet even if the numbers did not add up, these benchmarks are justified based on delivering justice and the fulfilment of basic human need to a group of people who have traditionally been deprived of such basic moral goods. The setting of benchmarks, and optimistic measurement criteria that have the support of the disability sector, is designed to address the lack of a common policy driving attitudes towards and actions affecting people with disabilities. Most importantly, the benchmarks are designed to create an environment where members of a sizeable, disadvantaged minority in society are free to maximise their potential and control their destinies. That is something to which all citizens should be accorded the right. Chapter Eight PUTTING THE BENCHMARKS TO PRACTICAL USE Introduction This chapter demonstrates that the benchmarks outlined in Chapter 7 have two key functions. Firstly, they can serve as a thermometer for assessing policy as a whole. Secondly, they can be used to formulate key evaluative questions to ask of any proposed change. Such questions may include, "Does this policy negatively discriminate against people with disabilities? Does it make people with disabilities dependent on charity for something that is essential for full participation in society? Does it cause a person with a disability to use their discretionary income to pay for disability-related costs?" Whichever policy can be said to satisfy the most benchmarks most comprehensively is the one that will make the biggest contribution to achieving equality of opportunity for people with disabilities. Using the benchmarks, scoring tools can be developed to assess the appropriateness of policy alternatives, including the status quo. For example, the status quo may have a score of 0. Policies that advance progress towards achieving the benchmarks may have a positive number, while those that contradict them may have a negative number. This chapter applies the benchmarks to current policy debates and some aspects of existing policy to demonstrate their usefulness in a real world context. Changes to the DSS Framework As discussed in Chapter 4, the DSS framework divides the funding of services into three distinct categories - needs assessment, service co-ordination, and service provision. Funding decisions are made by one funder, the HFA. Except in rare experimental cases, it is not possible for a person with a disability to opt out of the HFA structure. As the Steering Committee on Implementing the Coalition Agreement on Health identified in 1997, there was growing concern about the disempowering nature of the needs assessment system. Furthermore, there was a view that people with disabilities were having to repeat information to the needs assessor and service co-ordinator. Because of this duplicative element, the current system does not comply with Benchmark 9 on efficiency and co-ordination. It also runs into serious difficulties with Benchmark 2 on self-determination. While the needs assessment system can sometimes work, and is supposed to work, as a partnership, it is still a mandatory point of entry into the DSS framework. If a person is quite clear about what services they require, and where to get them, they must still have a needs assessment where a third party validates those needs. There is certainly a need for advice to be available to those who have recently acquired a disability or who are seeking information about their options. This is explicitly accounted for in Criterion 2.4. But the compulsory nature of this process as it stands at present would appear to require modification if we measure the existing policy against the benchmarks. Having identified the duplication and potential disempowerment inherent in the present system, policy must be designed to correct this, and to measure favourably against as many of the other benchmarks as possible. An alternative model would be to abolish needs assessment as a compulsory entry point, and instead to establish Service Advice Centres, at which attendance would be optional. The concept of Service Advice was introduced to New Zealand in a document reviewing the rehabilitation programmes of the Royal New Zealand Foundation for the Blind.78 A service advisor would have a detailed knowledge of the services available, and discuss the relative merits and consequences of each of those services with the client. The decision as to the options pursued would rest entirely with the client. In this example, Benchmark 1 appears to have a neutral effect, given that the matter in question relates to operational issues surrounding disability support services, and not a legislative matter. The service advice concept has the potential to score more highly against Benchmark 2 than the present system. If devised appropriately, people with disabilities can certainly participate in the plan's development. Additionally, an advisory service is more consistent with empowerment and self-determination than a service that has the ability to choose whether to validate the needs of a person with a disability. Whether service advice scores well against Benchmark 3 will have to be determined by the outcome of the advice received. It will be important that those in the advisory capacity have a positive, independence-focused attitude towards people with disabilities. Indeed, Benchmark 2 will be better complied with if the advisors themselves are people with disabilities. If the advisors provide appropriate encouragement and advice, then this will result in a higher level of independence than was being attained prior to the enlisting of this advice. While service advice would be a gateway to essential services, it can nevertheless be argued that service advice in itself is essential for the independence of people with disabilities, and should thus be fully funded by the state. While service advice as envisaged in this proposal provides advice to individuals with disabilities, and thus will not directly affect issues of access to society at large, service advice centres must of course be models of accessibility. This would involve access to the building, and to all information provided. To comply with Benchmark 5 on compensation for the costs of disability, service advice should not be paid for directly by the individual, because it is a disability-related cost, and discretionary income should not be depleted because of it. To comply with the benchmark on diversity, advice must be provided of relevance to the specific disability of the individual, rather than attempting to provide generic disability advice. This would require specialists in a range of disabilities. It will also be necessary for separate Maori provision to be available, which takes account of the role the Whanau will play in rehabilitation and support. Care must be taken to take account for the fact that there will be vast differences in the abilities of individuals from within the same disability group, so the advice dispensed must match the abilities and aspirations of the individual being advised. The best practice benchmark can be satisfied by looking at local providers who have implemented the service advice system, examining international research, and running pilot schemes to assess its viability in a real world setting. For service advice, an inclusive society should be seen as a desired outcome of the advice provided. For example, large numbers of referrals to institutional settings or sheltered employment would indicate non-compliance as these settings exclude people with disabilities from mainstream society. If the new system were set up correctly, there could be significant gains over the status quo in the area of co-ordination. Issues relating to benefit entitlements, rehabilitation irrespective of cause of disability, employment, equipment and access could potentially all be handled by service advisors. This could reduce duplication and ambiguity. Service advice appears to comply better with the benchmarks than the status quo, particularly in the area of diversity, which was the subject of criticism by the Steering Committee on implementing the Coalition Agreement on Health, and in the area of self-determination. The question of how a person with a disability should be funded to access services from a provider is one that has sparked much debate. Problems with the contracting system, capped budgets resulting in people being deprived of essential services, and the remoteness of funding decisions from people with disabilities were covered in Chapter 4. One proposal is that a person with a disability should have the ability to purchase his or her own services. There are, however, dangers in a voucher system. The needs of people with disabilities can vary greatly, and capped budgets may deprive people of essential services. If a person with a disability was forced to resort to being dependent on voluntary giving for these services, this would contravene Criterion 3.4. Vouchers are also problematic given the current degree of misunderstanding that exists about the capabilities of people with disabilities. Most people acquire a disability late in life, by which time they have been exposed to a life-time of misconceptions about disability. They therefore may use their voucher to purchase services that do not maximise their independence, such as residential care, when rehabilitation would make such care unnecessary. Of course, it can be argued that such a decision is the right of every individual to make. Nevertheless, if it is being made out of ignorance, then the decision is made with incomplete information, thus not adhering to Criterion 2.4. Another alternative strategy to a voucher system or the status quo would be a regime in which the provider invoiced the government for services the consumer had chosen. As an operational policy, this once again is neutral on the equality in law benchmark. It scores highly on the self-determination benchmark compared with the status quo. Currently, the HFA determines the services to be purchased, whereas under the proposed system the individual with a disability would make that judgement instead of a funder. Because of the recognition that essential disability support services should not be capped, but rather be funded based on invoice, it satisfies Criterion 3.3 in that people would not be dependent on charity for essential services. Both a voucher system and the status quo do not offer this assurance. The criterion under Benchmark 3 regarding independence for daily living tasks and economic independence should be used to determine the success of the services. As a disability support service, all providers should adhere to all universal access principles, although this benchmark does not impact on measuring the appropriateness of an invoicing system. Given that the government is being invoiced, there should be no financial cost to the consumer. It would be important to ensure that any travel costs for both the client and support staff are factored into the invoicing system. Although there will need to be appropriate auditing and accrediting of agencies entitled to invoice government for disability support services that have been provided, the absence of a contracting system is likely to minimise barriers to entry. This should result in greater consumer choice, and hopefully providers that can take account of the diversity of need within the disability sector. Before full implementation, it will be necessary for further research to be conducted on similar models overseas. There will also need to be a pilot project with a diverse range of consumers in New Zealand in order to satisfy Benchmark 7. The positive and negative effects of the invoicing system on an inclusive society would need to be considered carefully. On the one hand, government will have less direct control over what services it pays for under this model, in line with concepts of self-determination. It will therefore need to use mechanisms other than being in control of what is purchased to ensure economic efficiency. As well as motivations based on the moral appropriateness of equality of opportunity, it will be in the economic interests of government to ensure that expensive institutional services are not provided unnecessarily. This will act as an incentive for the government to promote attitudinal change and make society more inclusive. On the other hand, it could be argued that because the government is providing disability support services whenever they are required, society as a whole may feel less of an obligation to consider or include people with disabilities. It is likely that this can be counteracted with appropriate public education, provided the possibility of such a backlash occurring is recognised. The co-ordination benchmark is one area in which the invoicing system may not score as well as the status quo. This is because there is likely to be an increase in the number of providers offering similar services under this system. Consumer choice can of course result in more customer-focused services, but it is true to say that resources in highly specialised areas may well be spread more thinly under this model. With the exception of Benchmark 9, the invoicing system appears to advance equality of opportunity more thoroughly than the status quo. Will Government do Everything? One possible criticism of the benchmarks listed in Chapter 7 is that they are nothing more than a wish list masquerading as moral imperatives, and requiring government to provide everything people with disabilities want. It is therefore useful to spend some time looking at the boundaries of the framework outlined in the benchmarks, and the role voluntary giving would play in areas outside of those boundaries. Writings by Rawls, Barret and Townsend as referenced in Chapter 6 provided the moral justification for the benchmarks on equality of opportunity. But the benchmarks are not devised to suggest that there is no place for voluntarism in the disability sector, or that the government is somehow obliged to meet all the wants of people with disabilities. There are a number of tests inherent in the benchmarks. One example that can be use to test the boundaries of the benchmarks is to look at the two most common methods of travel assistance that are used by a blind person - a white cane, and a guide dog. Which option should the government fund if the benchmarks are applied? Guide dogs are attractive to the donor public. The sight of a dog assisting a blind person is heart-warming, the dogs are generally cute, attractive, and hopefully well-behaved. The Royal New Zealand Foundation for the Blind receives no government funding for guide dog services whatsoever. They estimate that a guide dog costs around $22,000 during its working life. A white cane is the basic mobility tool for blind people, costing around $30. Images of a blind person with a stick are age-old. There is little evidence to suggest that a white cane symbolises independence or competence to the sighted, although many blind people view the cane as a symbol of independence. The HFA will, in some cases, purchase white canes. For blind people with average orientation skills, a white cane will aid them in moving safely and effectively, helping them to negotiate obstacles, giving them tactile clues, and assisting them to their destination. Some people with such skills still prefer a guide dog as a mobility tool. Movement is generally faster, because the dog takes the blind person around obstacles without the blind person coming into contact with them. A guide dog can be trained to find destinations, and certain facilities such as doors, lifts and steps. Yet a blind person with reasonable orientation skills can often travel with reasonable confidence and locate destinations with a cane. Some blind people, due to additional impairments such as hearing, or due to poor spacial awareness, are poor travellers with a cane. For them, the choice becomes using a guide dog to travel with independence and safety, or waiting until they can get assistance from a sighted person. The current regime does not cater for these different circumstances resulting from varying levels of skill. The HFA has made it clear to the Foundation for the Blind that it considers guide dogs to be a luxury item, and for those for whom it is not, the guide dog programme is popular with donors so doesn't require government assistance. Blind people have felt for some time that the HFA should judge each case on its merits. It is interesting to apply the benchmarks to this idea to see whether it complies with them. Section 18 of the Bill of Rights Act 1990 accords all New Zealanders the right to freedom of movement. For the equality in law benchmark to be satisfied, steps must be taken to ensure that people with disabilities can exercise this right. Not doing so would not satisfy Criterion 1.3. The policy under discussion could potentially score poorly against the self-determination benchmark. This is because the HFA or its agents would still be making a judgement as to whether someone's independence will or will not be served by the acquisition of a guide dog for a given individual. There may always be the temptation to claim that poor white cane performance can be improved by more training, in order to minimise expenditure on the more expensive guide dogs. Perhaps the most important benchmark affecting this policy is Benchmark 3 on independence. All of the criteria under Benchmark 3 are relevant. In determining whether a white cane or a guide dog should be provided, the question would need to be asked "Will one of these aids allow the individual to perform more of the functions independently that we would expect a person without a disability to perform? Will the provision of this aid increase the likelihood of economic independence?" Finally, if we determine that the aid is in fact essential for a person's full participation in society, then it would be inappropriate under these benchmarks for the aid to be provided by charitable giving. In other words, if a blind person simply preferred to travel with the aid of a guide dog because it was easier, then a guide dog is discretionary, and it should be funded from charitable giving. On the other hand, if a blind person could not be independent without a dog, then the aid must be provided. A guide dog may make a difference to whether certain aspects of the environment are accessible. For example, someone who has a sight and a hearing impairment may not feel comfortable crossing a busy street unless a guide dog can alert them to when it is safe to cross. For some people however, the accessibility of the environment will not be affected by their choice of travel aid. Benchmark 5 on compensation for the costs of disability suggests that because a guide dog and a cane are both disability-related costs, it would not be appropriate for the purchase or maintenance of either mobility aid to be the responsibility of the consumer. It is important to refer back to Benchmark 3 to determine whose responsibility the purchase should be, and under what circumstances. It is not always the responsibility of the state in every situation. The current policy of the HFA simply refusing to fund guide dog services is in conflict with Benchmark 6 on diversity. In the proposed policy, the focus on the needs of the individual and the independence and access accorded to each individual has ensured that the diversity benchmark is satisfied. It will be important to pilot a scheme where individual assessments of mobility are carried out and reviewed, mainly because of the concerns about compliance with Benchmark 2 on self-determination. The proposed policy scores well against the inclusive society benchmark. If the end result is more people travelling independently and taking a fuller part in the activities of their community, then this certainly assists society in being more inclusive. The co-ordination benchmark scores neutrally on this policy topic, provided there is no attempt made to define the primary purpose of the mobility aid and have it funded accordingly. For example, if it was considered appropriate for the Ministry of Education to fund a guide dog for a school student, and the HFA to fund a guide dog for a university student, this could lead to demarcation issues of the kind described earlier. On the whole, the benchmarks support the idea that the HFA needs to be less dogmatic on this issue. However, this does not mean that everyone who wants a guide dog should be provided with one by the state. There will always be a need for organisations to provide services that are not essential. If those services are not considered a basic human need or a right, then this is reasonable. Schools, sports organisations, and many other organisations in society raise funds for extras. People with disabilities should not be shielded from this, but nor should they be required to beg through their agents for services that principles of justice, and national and international law require to be provided as of right. Funding For Assistive Technology In recent years, assistive technology for people with disabilities has advanced in terms of its sophistication and power at a rapid rate. Such technology includes tools to help people use computers, as well as aids that assist with general participation such as hearing aids and lightweight electric wheelchairs. Society in general is making greater use of computer technology. Potentially, this increased use of technology by society at large improves a person with a disability's employability if they have access to assistive technology, but it also increases demand for and dependence on assistive technology. The increasing desire of people with disabilities to be active participants in society, coupled with the government's stated aim to focus on fostering independence from the state, are all factors which have contributed to the explosion in demand for assistive technology. As was discussed in Chapter 4, waiting lists for equipment are long. Criteria have been narrowed in recent years in an effort to ensure that only relevant equipment is provided, and only to those who, in the opinion of the purchaser, really need it. Anecdotal evidence received from assessors who are contracted by government agencies to make recommendations on appropriate equipment suggests that financial pressures have resulted in increased interference in assessments with a view to curbing expenditure. It appears that officials are not convinced that appropriate distinction is being made between needs and wants. On the other hand, some people with disabilities claim that the current equipment regime is too judgmental and restrictive. The benchmarks seem to require a more generous equipment programme than is in operation at present. As discussed in Chapter 4, the North Health Accredited Assessor's Manual states that equipment is only available when it is essential to: Achieve mobility; Express needs and feelings; Return to or remain in their own home or private accommodation; Care for family members residing in the same dwelling (where the client's disability is making this impossible); Access full time tertiary education, training or employment.79 If the state is to provide assistance to maximise the independence of people with disabilities, then this definition is unacceptable as it stands, as can be seen by working systematically through the benchmarks. Section 14 of the Bill of Rights Act 1990 states, Everyone has the right to freedom of expression, including the freedom to seek, receive, and impart information and opinions of any kind in any form. This would appear to lend support to the idea that assistive technology, when used to seek or impart information, should be made available. While interpreting the Act in this way for the purpose of this single benchmark may imply that anyone who wants assistive technology should have it, the boundaries are further defined as we proceed through the benchmarks. The self-determination benchmark is important, because anecdotal evidence suggests that the status quo hinders self-determination in practice if not in theory. Comment from people with disabilities indicates that they feel assessors sometimes become familiar with only one product in any given area, and recommend it irrespective of the client's requirements. This benchmark would suggest that greater care must be taken to provide objective evaluation of a range of equipment, emphasising the strengths and weaknesses of all products and giving the client the opportunity to decide what best suits their needs. Once again, the independence benchmark is highly significant. Greater availability of assistive technology will improve compliance with Criterion 3.1. However, as was the case in the section on the place of voluntary giving earlier in this chapter, this does not mean that the government must satisfy a person's wants. Assistive technology that is essential to ensure full participation in society should be funded. Anything over and above this is discretionary. For instance, a deaf person may not be able to communicate with the outside world from their home without a facsimile machine, but this does not require the government to purchase an appliance with additional and expensive features such as a machine with a built-in answerphone that may be of use to hearing members in the household. The status quo provides fairly well for economic independence, given that support is available (albeit after a considerable wait) for people who need equipment to obtain or retain employment. However, there is also considerable dependence on charitable giving on the part of people with disabilities who do not meet the present criteria, but have needs for which assistive technology is essential. In particular, people undertaking voluntary work are not entitled to special equipment in some parts of the country. A wider definition may also assist with benchmarks relating to access. For example, a blind person who wishes to read the daily newspaper and/or their personal mail (something which most New Zealanders take for granted) would not be entitled to any facilitating assisting technology under the North Health definition. Yet access to written information is a function which facilitates social interaction, may improve employment prospects, and is certainly not something which is considered a luxury item for someone without a disability. Issues of privacy and a natural human interest in knowing what is going on in the society in which one lives, make such access to information a basic human right, something denied to many people with disabilities. The need to use technology to perform any task other than in a manner considered "normal" is a cost of disability. Therefore, any assistive technology that is required to perform such tasks should not deplete the discretionary income of the individual. Whether or not the state should pay that cost depends on whether it is essential as discussed when reviewing Benchmark 3. For a policy to comply with the diversity benchmark, it will be important not only to look at the disabling affects of each category of impairment, but also to examine the individual's requirements. For example, one totally blind person may well be more comfortable using a Braille display, while another prefers to use speech synthesis to access their computer. Additionally, someone with a little useable vision may well prefer a large screen. In general, when a person qualifies for assistance, the status quo appears to do well in this area. The best practice benchmark suggests that it would be appropriate to trial the allocation of equipment to people who would not be entitled to receive it under the present regime, to measure budgetary implications and benefits gained to the client. A pilot would also identify training issues that would also need to be accounted for when budgeting. The increased provision of assistive technology can make society more inclusive. Adapted vehicles for people with physical disabilities, communications devices for the deaf, and reading machines for the blind are all examples of ways in which people with disabilities can be included in society more fully. Technology is also opening up new employment opportunities, many of which are home-based. The fact that with the right technology, people with disabilities can be full participants in the Internet revolution can also change attitudes about people with disabilities on the part of the non-disabled. People can often communicate and/or transact business on the Internet with a person with a disability for some time without even knowing that the person with whom they are communicating has a disability. As was identified earlier, there is considerable fragmentation and duplication in the area of equipment provision. The status quo scores very badly against this benchmark. Adults with disabilities in employment or who are about to enter employment may obtain assistance from the HFA or through Workbridge. Secondary students with disabilities must return equipment to the Ministry of Education when they complete their secondary schooling, and apply for the same type of equipment from the HFA. During the design of the DSS framework in 1992, the government identified the plethora of government agencies providing disability-related programmes as confusing and inefficient. In many areas, significant consolidation occurred, and this was helpful. Yet to satisfy the benchmarks outlined in Chapter 7, there is room for further consolidation. One agency should be responsible for the provision of equipment to people with disabilities irrespective of their age or circumstances. Assistive technology is a specialist area. While there may be a need for expertise in the area of children's equipment, this is more likely to be in the area of instruction rather than choosing the most appropriate equipment. For example, whether a print-disabled individual is aged 8 or 28, the function of assistive technology will be to assist such people to communicate with their print reading peers. Combining the various agencies providing assistive technology will bring together people with expertise in this field, be more economically efficient due to the elimination of the need to return equipment when an individual suddenly becomes the responsibility of a different agency, and will be less confusing for clients. Work Capacity Assessment In a move that has caused considerable debate within the disability sector, the government is running a pilot programme in which Invalid's Beneficiaries are being work tested. Many speeches and statements by government ministers in recent years have recorded their concern about the escalating numbers of Invalid's beneficiaries. The announcement of the programme in 1998 was couched in terms of encouraging people with disabilities to determine what they can do, rather than government focusing on what they can't. However, there is much literature and media comment to indicate that the government's primary motivation behind the programme is to lessen people's "dependence" on the state (in other words to decrease expenditure on welfare). It is possible to see firstly whether such a regime is at all compatible with the benchmarks, and secondly, if it is, what characteristics it would need to have in order to ensure maximum compatibility. It would appear that work capacity assessment is consistent with the benchmark governing equality in law. Under the Social Security Act, there is a clear expectation that all beneficiaries should seek work whenever possible. It has been argued that to exempt all people with disabilities from this provision merely because they have a disability without looking at their individual circumstances would in fact negatively discriminate against people with disabilities. The trial is at too early a stage to determine whether it is consistent with self-determination. People with disabilities have been consulted in a very limited way during the development of the trial's parameters, probably because there is considerable anxiety and even hostility towards the trial. To meet Criterion 2.4, it will be necessary for a specific job or career direction to be no less the choice of the individual with a disability being assessed than it would be in a similar situation for other beneficiaries. One of the dangers with any employment-related programme for people with disabilities is that it is all too easy for those administering the programme to decide that a person with a certain disability is not capable of a certain career path because of that disability. While it is acknowledged that there comes a time when the career choices of all beneficiaries become limited, the limit should not be based on an administrator's perception of the impact of a given disability. Individuals with disabilities must be able to assess the impact of their own disability. If appropriate training and encouragement is provided, work capacity assessment may score well on Benchmark 3, independence. In particular, employment facilitates economic independence. While universal access must be considered when administering the programme itself, better access in the areas identified in Benchmark 4 is likely to improve the chances of placing people with disabilities in work. For example, if transport to a place of work is difficult, physical access to the place of work is inadequate, and information is in an inaccessible form, a person with a disability will not be able to participate to their maximum potential. This suggests that work capacity assessment needs to take place in the context of a strategy that focuses on wider issues than just the employability of the individual. Work capacity is in serious breech of Benchmark 5 if its primary motivation is to reduce the number of people on the Invalid's Benefit. Little research on the costs of disability has been conducted in New Zealand, but it may well be that a person's disability-related costs actually increase when they gain employment. Methods of transport which are more expensive than what might be considered the most cost effective option for someone without a disability, may not be suitable for a person with a disability, particularly if progress is slow with respect to the accessibility benchmark. The more expensive transport option, such as a taxi instead of a bus, is therefore not discretionary, but a cost of a person's disability and should thus be compensated for. A person's assistance from benefits may be reduced when a person with a disability works because the benefit no longer has to cover the regular costs of living. However, the reduction in payment may not be as sizeable as may at first glance be thought possible due to these increased disability-related costs. There are many challenges facing the work capacity assessment programme if it is to comply with Benchmark 6 on diversity. If care is not taken to ensure that assessors are employed who specialise in specific types of disability, there may well be a repeat of the unacceptably generic needs assessment system introduced as part of the DSS reforms. Further, the programme will need to be sensitive to the fact that people with specific disabilities are just as diverse a group as the rest of the community. Depending on the disability, an individual's capabilities may actually vary from day to day. This programme has to date complied very well with Benchmark 7, best practice. A pilot project is now running, and the assessment model has been based on international research. In the field of employment, an inclusive society and economic independence are quite closely linked. If the work capacity assessment programme, in an effort to promote employment opportunities for people with disabilities, addresses and seeks to effect attitudinal change, and the programme results in people with disabilities participating in genuine mainstream jobs, then the programme can score well against this benchmark. There are very real doubts about the programme's compliance with the co-ordination benchmark. There has been some concern expressed about the fact that an assessment system will be developed for work testing, which may in many cases require clients to repeat information they may have already communicated to HFA-funded assessors. There is also talk that during phase two of the work capacity trial, training and equipment that will be required in order for a person with a disability to maximise their employability will be identified and purchased. Finally, there are still questions about how Workbridge interfaces with this programme. Unless there is some kind of integration with existing assessment and equipment funding mechanisms, it seems that duplication will result. Another source of assessment and equipment would cause further confusion and frustration for clients. The benchmarks then would seem to encourage work capacity assessment when it is genuinely designed to increase employment prospects. They guide us to a model where work capacity assessment is a non-threatening facilitation process, built into the existing assessment and equipment funding regime, and taking account of the need for attitudinal change throughout society to make the employment of people with disabilities more likely. Conclusion This chapter has applied the benchmarks to just a small number of the areas being debated in disability policy today. There are many other examples that could have been chosen. What this chapter has sought to demonstrate, is that the benchmarks are universal enough, yet instructive enough to serve as a useful public policy tool for assessing whether a public policy will assist with the goal of equality of opportunity for people with disabilities. They necessitate a much more co-ordinated approach throughout the public sector. It is an approach based on clear principles of justice, which have been obscured in public policy processes on disability up until this point. Chapter Nine CONCLUSION An examination of the history of disability policy in New Zealand shows that the degree and form of state involvement in the sector has been influenced by societal values, and the dominant philosophy of the government of the day. In early colonial New Zealand, disability was considered a burden reflecting the possible deterioration of the "British Race", and the responsibility of charity. Gradually, the state somewhat grudgingly began to be convinced of its obligations towards all children, including children with disabilities. The feeling that a debt was owed to the many disabled veterans of World War I caused the state to look more seriously at disability support services to adults, and the construction of the social security system recognised the costs of disability. The state provided increasing levels of assistance, either directly through hospital boards and other government departments, or through grants to non-governmental organisations. Eventually, these grants were turned into contracts, in which the government became much more specific about what it would pay for, markedly increasing accountability, but reducing the autonomy of service providers to negotiate priorities with the clients they served. As consumers with disabilities began to speak for themselves, shaking off the well-meaning but custodial and paternalistic attitudes that drove disability policy and services, rights and participation came to the fore. People with disabilities came out of institutions and sheltered employment, certain of their ability and moral right to participate in society. While people with disabilities are still largely absent from positions of direct influence in the policy formulation process, they have become increasingly effective in their advocacy. A series of legislation affirming the equality of people with disabilities was passed. The haphazard evolution of disability policy has left considerable inequity, ambiguity and duplication in its wake. People are entitled to different services based on the cause of their disability, the type of disability, and the reason for requiring the service. Social security provisions compensating for the costs of disability are provided to the blind, but not to any other group. Rehabilitation services are funded more fully by government for some groups than others. Government departments quibble over whose responsibility it is to deliver a service essential to a person with a disability. It is also clear that current policy has not shaken off the legacy of a medical focus. People with disabilities have made it clear that they are disabled not by their impairments, but by societal constructs which are changeable. In other words, the extent to which an impairment is disabling is society's choice. Despite this change in mindset on the part of people with disabilities, more attention is paid by the state to rehabilitation and support than to addressing society's deficiencies. With the number of people with disabilities set to increase steadily in the next 20 years, this is an issue that must be addressed. Even now, twenty percent of the population is effected in some way by this policy gap. This thesis has suggested that a means of dealing with these policy problems is to consider the obligations a just society has to all of its citizens, as well as ensuring that we comply with international and existing legislative obligations. The fundamental issue is to advance the equality of opportunity of people with disabilities. New Zealand accepts this in principle, and accordingly has become a signatory to the United Nations' Standard Rules on the Equalisation of Opportunity for Persons with Disabilities. However, a policy tool is needed to answer the question "How do we know what effect this policy will have or is having on equality of opportunity for people with disabilities?" Such a tool is suggested here in the form of nine benchmarks for equality of opportunity for people with disabilities. It is a tool that deals with issues at the strategic level, in order to be relevant to the entire public sector. This will allow all government entities to use the benchmarks for equality of opportunity, thus being consistent with the view of people with disabilities, that disability is an issue for which all of society must take responsibility. Nine benchmarks; equality in law, self-determination, independence, universal access, compensation for the costs of disability, diversity, best practice, inclusive society, and co-ordination are proposed. Under each benchmark are indicators, some quantitative, others qualitative, which can be used to measure progress in each area, and assist with the assessment of policy alternatives or existing policy. If the benchmarks were applied, disability policy is likely to look considerably different from the status quo. Certainly, there would be a greater consistency of motivation on, and commitment to disability policy across the public sector, and greater justice for a sizeable number of people in New Zealand society. Final Comments The first date mentioned in the historical section of this work was 1882. It was then that the Imbecile Passengers' Act was passed. It is sobering to contemplate that in 1882, as a blind person, the writer would have been called an imbecile. In 1999, this imbecile hopes to graduate with a master's degree, something that is now not that uncommon for blind people in New Zealand. What's more, the road to achieving that goal has not been in the least bit as rocky as it was for Ernest Chitty, the first blind person to graduate with a master's degree in New Zealand in 1909. When he wanted to sit the Junior National Scholarship examinations early this century, he was initially not permitted to do so because he was blind. When his teacher insisted that they mark his examination paper even if they wouldn't recognise his entry formally, he achieved more marks than any of the sighted students who sat the examination with him.80 Ernest Chitty was the victim of prejudice and discrimination at the hands of the state. While some may dismiss such stories by saying that one has to be mindful of the social context which is so very different from today, it makes the discrimination no less abhorrent. The education authorities clearly said that because he was blind, his outstanding academic ability counted for nothing. Eventually they relented, but he and his teacher had to fight for what was a right available to everyone of similar academic ability without a disability. In the compiling of his thesis, Ernest Chitty would have had to have many pages of material read to him by a volunteer. He would have painstakingly Brailled his notes one dot at a time with a stylus and writing frame. Finally, he would have typed the script, copying from the Braille copy he would already have written. The process would have taken a great deal longer than it would have for anyone else. Ninety years later, this thesis was aided by hundreds of pages of material scanned into a computer. It was typed in Microsoft Word with the assistance of adaptive technology. Like other New Zealand Universities, the Victoria University of Wellington seeks to accommodate students with disabilities. Sometimes things are overlooked to the extent that they even reach the Human Rights Commission. Nevertheless, a policy is in place, and awareness continues to increase. A blind person studying at post-graduate level is entitled to apply for funding for a research assistant. Lecturers e-mail material that will be handed out in class. Haven't we come a long way from the days of that pioneer, Ernest Chitty? The answer is, "Yes and no." For all the progress that has been made, there is still a long way to go. The government now discriminates not overtly in the way that it did to Ernest Chitty, but now the discrimination is more subtle, perhaps in many cases unintentional. Unintentional though it may be, it is discrimination nonetheless. It is discrimination through lack of action because of a decision that the meeting of basic human needs for a section of society has too high a financial cost. The benchmarks proposed in this work are merely foundations for the achievement of basic human needs and rights. They are the prerequisites for people with disabilities being able to get up in the morning, browse the newspaper, catch the bus and alight at the correct stop to go to their place of work, perhaps every so often go out to dinner at the end of the day, and return home with a feeling of contentment and fulfilment. We have come a long way since the Imbecile Passengers' Act of 1882, yet this very ordinary day is out of the reach of many people with disabilities. 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