This chapter traces the evolution of health and welfare services for the intellectually handicapped in New South Wales from colonial times to the present day. One of the themes woven through this account is the laboured emergence of recognition of the intellectually handicapped as a distinct group with needs that are to a large extent different from other groups, particularly the mentally ill. As a result of their low status, services for people with intellectual handicaps have tended to lag behind those provided for other disability groups, though in recent decades there are signs of increased efforts being made to rectify this situation. Some of these efforts have been made by groups of parents to provide services privately that the State either could not or would not render and some of the activities in the public sector are the result of lobbying and agitation by parents. One of the major developments in this area has been the emergence of the parents’ movement since the Second World War and this has been a great help for those professionals who have worked to upgrade government services.
The early days
The first services for the intellectually handicapped were part and parcel of the psychiatric services, such as they were, which in turn evolved from more general benevolence and poor relief. The first mental hospital in the colony of New South Wales was established in a dilapidated farm building at Castle Hill in 1811. This was Governor Macquarie's attempt to improve condition of persons "labouring under the affliction of mental derangements" who were kept in prison, in degrading circumstances and often at the mercy of gaolers and fellow prisoners alike. A small group, in the order of a dozen "Lunatiks" including some people with intellectual handicaps moved into the farm and the Governor noted that "Every provision that humanity should suggest" should be made for their health and comfort (Cummins, 1979; 33).
Despite Macquarie's good intentions a number of factors undermined the success of the venture. The buildings were overcrowded and understaffed, they were too remote for proper supervison and the physical structure of the asylum ran down until it became unfit for habitation. In 1825 the 25 residents moved to a renovated courthouse in Liverpool. This move set a pattern that was frequently repeated over the years; the mentally ill and the intellectually handicapped were often housed in buildings abandoned as unsuitable or no longer required for some other purpose. This was the case with the military barracks at Newcastle that became the Newcastle Asylum, an unused prison at Cooma, the old quarantine station at Stockton and the Inebriate Institution at Rabbit Island , now Peat Island.
An important advance in thinking on the nature of the services required for people with intellectual handicaps occurred in the 1860s under the guidance of Dr. Norton Manning. Cummins described him as austere, upright and dedicated; he first made his mark as the administrator of the Tarban Creek Asylum which had in 1838 replaced the Liverpool courthouse as the main asylum in the colony. He gained the confidence of the Colonial Secretary, Henry Parkes, who sent him overseas for 15 months to study asylums in the United States, the United Kingdom and Europe. He presented a voluminous report in 1868 with guidelines for the development of services based on the high hopes current in advanced circles at the time that mental afflictions could be overcome by proper regimes of healthy living and productive training, usually in farm work and trades. He also addressed the problem of protecting the rights of people in care and his report provided the basis for the Lunacy Act of 1879. This Act continued to provide the legal basis for treatment of the mentally ill and intellectually handicapped until 1958.
Manning, appointed as the first Inspector-General of the Insane in 1876, was probably the first administrator of the psychiatric services in the colony to make a clear distinction between various groups in care. For example his annual report for 1877 noted that "...idiots and imbeciles should be treated distinctly from other classes..." and that they should not be associated with lunatics in asylums ( Inspector of the Insane, 1878). He proposed that the system of asylums should be decentralised to serve the outlying parts of the state, and specialised to provide separate institutions or at least separate sections for acute cases, chronic cases, the criminally insane and the intellectually handicapped.
"He was guided by the principle that the main character of an institution should be that of a school rather than an asylum, but his attempts to realise this principle were thwarted by lack of resources. Year after year he was forced to write in the annual report on the Newcastle Asylum (then the major facility for the intellectually handicapped) '...the further step of systematic teaching remains. Up to the present owing to the want of space and of class room and appliances, this has not been attempted'. " (Inspector of the Insane, 1878).
Manning's annual reports are worthy of further comment. Cummins wrote
“The earlier reports of Norton Manning were dynamic critical documents which often excited supportive newspaper editorials and feature articles on the causes of insanity, the problems of overcrowding and the miserable conditions within the mental hospitals. Manning saw and used these Reports as a vehicle for public exposure in his drive for reform." (Cummins, 1979; 106).
Under his administration asylums were established at Callan Park, Orange (Bloomfield), Goulburn (Kenmore), and Newcastle (the Watt St. Asylum, especially for people with intellectual handicaps). The records indicate that the number of intellectually handicapped in care grew greatly during the century, proportionally far more than the numbers of mentally ill in the asylums. The records of the Tarban Creek Asylum list only 5 cases described as "Idiocy" or "Imbecility" among 489 cases recorded for the period 1838 to 1846 (Bostock, 1968 ; 95). The prevalence of people with intellectual handicaps in care in those days was lowered by the high mortality rate of the more severe cases and the ready availability of work for the able-bodied intellectually handicapped. In 1887 there were 196 residents in the Newcastle Asylum of whom 153 were classified as imbeciles and idiots (McDonald, 1980). Manning noted the rise of admissions during the depression years of the eighties and nineties and he commented that during these times of hardship fewer people were willing or able to care for handicapped relatives (Inspector-General of the Insane, 1886). Some years earlier he also noted a rise of intolerance on the part of the general public towards 'cranky' or unusual behaviour ( Inspector of the Insane, 1877). Towards the end of the century it appears that the trend for the intellectually handicapped, and perhaps for the mentally ill, was towards institutional care, in contrast with the trend for other groups such as children and old people for whom some historians described a wave of reform to "empty the barracks" during the same period (Dickey 1980 ; 81-131 , Kewley 1973 ; 15 ). The major expressions of the trend away from the "barracks" towards "outdoor relief" were the old-age and invalid pension schemes introduced by the Commonwealth government in 1910 (following a slightly earlier N.S.W. initiative for old-age pensions). The invalid pension scheme was probably not introduced with people with intellectual handicaps in mind but as the figures in the next chapter reveal, this scheme has become a major conduit of funds to this group.
The eugenic scare and twentieth century
Near the turn of the century came a phenomenon that was to shatter hopes for humane reforms for the intellectually handicapped for at least a generation. This was the "eugenic scare", the theory that the mentally infirm would lower the genetic standard of the race if they were allowed to live normally in the community to breed and propagate their own kind. This theory gained wide currency in the United States following studies of two large families.
An event of lasting significance was the publication in 1877 of a study, by a volunteer welfare worker, of 'the Jukes', a presumably degenerate family spreading illiteracy, disease, crime, and pauperism through the generations. Twenty-five years later Dr. Henry H. Goddard published his famous history of the 'Kallikak family', re-emphasizing what he saw as the dangers to society from inherited feeble-mindedness, and this study remained standard fare in our colleges and universities until the comparatively recent past, confirming the pessimistic attitude toward the feeble-minded and pointing to such measures as segregation and eugenic sterilisation (Dybwad, 1964; 6 ).
In 1904 the British Government convened a Royal Commission on the Feeble-minded and in 1908 the resulting report made major recommendations for the education and control of the intellectually handicapped. Among the consequences of this report were the British Mental Deficiency Act, 1913 and the Elementary Education (Defective and Epileptic Children) Act, 1914. The first of these Acts gave Local Education Authorities the duty of discovering all the intellectually handicapped children in their area and the second required the Authority to provide education for the children so discovered. Other consequences arose further afield in New South Wales where the annual report of the Inspector-General of the Insane called for similar legislation in this state. In 1912 the report stated:
“Special attention has been called to this class of patient by reason of the report lately issued in England...due to the evil effect of the improper care of feeble-minded persons it is important to train them as well as possible according to their condition and also to supervise them to prevent their further multiplication by marriage. An Act should be passed to achieve this objective ( Inspector-General of the Insane, 1912).”
The annual report for 1913 noted the considerable public attention now paid to mental defectives following the British Royal Commission and its Report. It noted that the medical profession was fully alive to the dangers of allowing mental defectives to have unrestricted liberty in the community, as evidenced by a resolution at the Australasian Medical Congress held in Sydney in 1911. The resolution called upon the medical profession to press state governments to take steps to provide special education for all feeble-minded children and to press the Commonwealth to initiate a popular campaign to educate the people on the problem of feeble-mindedness ( Inspector-General of the Insane, 1914). The Report also stated that a bill to amend the Lunacy Act in accordance with the major recomendations of the British Report was in the hands of the Parliamentary Draftsman.
The Annual Report of the Inspector-General of the Insane (from 1919 the Inspector-General of Mental Hospitals) became a vehicle of agitation for the new legislation. For some years hopes were high. In 1921 the Report noted that the Minister had appointed a committee to consider the provisions of a draft Bill. With the wisdom of hindsight this step should have been seen as a sign of ill omen for protagonists of the Bill, for apparently it became a device for inaction. In 1922 the Report indicated that the committee had reported favourably to the Minister but in 1923 "Another year has passed without any provision being made by Parliament to enable the Department to take charge of mentally defective persons in this State...The situation is a serious one" (Inspector-General of Mental Hospitals, 1923). Similar sentiments were expressed in the reports for 1924, 1925, 1926, 1927 and on into the 1930s.
Two factors may account for the failure to legislate; one is the dissipation of the fears generated in the early stage of the eugenic scare. The other is the great cost that would have been incurred if serious attempts were made to identify all intellectually handicapped children and provide special education for them, and to provide more residential care at a time when over-crowding was a chronic and pressing problem in the existing psychiatric services.
The eugenic scare occurred against a background of lively debate concerning the dynamics of the Australian population. Great concern was expressed in some quarters at the declining birthrate, which was regarded as a sign of moral decline and a threat to national security and wellbeing (Browne, 1979). However some people were concerned about the quality of the people being born and the quality of life provided by the family; thus a eugenic component was added to the 'populate or perish' debate . The Racial Hygeine Association, now known as the Family Planning Association, formed with its aims including the provision of advice to "persons suffering from want of finance to support further children" and to give advice to persons suffering from mental deficiency on the part of the parents and their near relations. (Browne, 1979; 18 , 25).
The fear of the consequences of normal living for the intellectually handicapped reinforced the economic pressures towards using the existing asylums to "warehouse" the retarded. It appears that Australia did not go as far as the United States in pursuing the logical consequences of the eugenic scare; there many states legislated for compulsory sterilisation of the retarded and some of the asylums constructed for warehousing the retarded were gigantic with the average size of publicly funded residentials exceeding the thousand mark (Scheerenberger, 1978).
In Australia (as elsewhere) humanisation of the asylums was held back by the limited resources available and the lack of any guiding principle to check the negative effects of institutional and bureaucratic inertia.
Historically the major burden of responsibility for the care of the intellectually handicapped fell upon the health system, in particular the psychiatric services. As a result the asylums represented the major contribution of the public sector to the intellectually handicapped until very recent times. For much of this century the main aims of health policy in New South Wales, gauged from the annual reports of various Inspectors-General of Mental Hospitals were to persuade the Education Department to make provision for intellectually handicapped children of school age, and to provide sufficient space in hospitals or large scale colonies for adults and for children who could not benefit from special education (Anti-Discrimination Board, 1981b; 38).
In 1927 the Education Department began to provide primary and secondary education for mildly handicapped children but provision was made for children with a moderate degree of handicap only in the 1950s (Anti-Discrimination Board, 1981b; 85). Extension of Departmental activities into the area of the severe/profound and multiply handicapped occurred only in the 1970s and consisted of the take-over of schools originally established by voluntary associations of parents.
Government welfare agencies both at state and federal levels had little planned and systematic involvement with intellectual handicap until recently; these innovations are discussed later in the chapter. Since the turn of the century the NSW state welfare department under various names has cared for state wards (essentially neglected children) including some with intellectual handicaps. In 1910 the Commonwealth entered the field with the invalid pension ,though it is unlikely that this was intended to benefit people with intellectual handicaps. During the 1950s and 1960s continuous pressure from voluntary organisations resulted in the Commonwealth government making available subsidies for organisations providing services such as accommodation and sheltered employment for the aged and for people with handicaps.
The Voluntary Sector
Voluntary activity has been an important feature of welfare provisions in Australia from the start of the Colony (Dickey, 1980; Mendelsohn, 1979; Kewley, 1973 ). In the field of intellectual handicap the founding of the Lorna Hodgkinson Sunshine Home at Gore Hill in 1923 was a major milestone. This institution is important as the forerunner and model for post-war developments in the voluntary sector and as a monument to its remarkable founder.
Lorna Myrtle Hodgkinson spent some years teaching handicapped children in Western Australia and New South Wales, then traveled to the United States in 1920 on seven months paid leave from the NSW Education Department. The objective of the visit was to further her studies on the treatment of feeble-minded children. She enrolled at Harvard and took a Masters degree in education in 1921 followed by a Doctorate in 1922. She managed this despite the fact that she had never matriculated in Australia and in the face of various messages reminding her that her leave had expired, including a cable reading "Minister insists immediate return". Upon her return to Sydney , by way of Great Britain, she was appointed Supervisor of the Education of Mental Defectives in the State Children's Relief Department (which shared the same Minister with Education). In this capacity she wrote a letter to the Minister, which consisted of a scathing attack on the quality of care of intellectually handicapped children in state Homes. She noted that they were "...suffering mentally, physically and above all morally, for lack of a State institution where they could be properly classified and treated according to their needs" (Mental Defectives, 1923). She called up the spectre of the eugenic scare as a lead-in to her request for funds to provide a better form of service.
“These feeble-minded girls are spreading through New South Wales, having illegitimate feeble-minded children. Something must be done to check this fearful social evil, and the public of New South Wales is only waiting for someone to make a start” (Mental Defectives, 1923).
She went on to suggest that the Minister should raise a loan of 100,000 pounds to enable her to establish a major colony for the intellectually handicapped along the lines of the most advanced overseas developments. Initially this would cater for 500 people with capacity to expand to a thousand. Not surprisingly the funds were not forthcoming but she went ahead and made a start by herself, initially using a two-storey house on three acres of land at Gore Hill. The Home grew to become the largest single non-government facility in New South Wales for people with intellectual handicaps, pioneer and inspiration for post-war developments in the voluntary sector.
Post World War II
A major factor since 1945 has been the increased survival rate of handicapped children (and all children) due to the availability of antibiotics to counter respiratory tract infections. In parallel with improved housing, nutrition and health care generally, this has enabled countless handicapped children to survive not only early childhood but adolescence, and hence to create unexpected demands for education, occupational and residential services.
The world-wide rise of parents' organisations since the Second World War has been a highly potent factor in stimulating the development of services. The factors underlying this movement are worthy of further investigation and only hints can be offered here such as pent-up frustration with the inadequacy of state provisions, hitherto denied outlet due to the more pressing concerns of the Depression and the War. Many groups formed to provide education for their children when they discovered that the established education systems did not provide adequately for them. Some groups developed residential services as a continuation of their pioneering efforts in providing education, and sheltered workshops were also developed to cater for handicapped people beyond school age.
Many parents did not regard the state hospitals as a suitable residential option for their children, though they may have been prepared to place their names on a waiting list as a last resort. Their efforts to provide alternatives were constrained by limited finances and also by the models available to them such as the Lorna Hodgkinson Sunshine Home. Some writers such as Heal et al.,( 1978) have linked the rise of the parents movement with the rise of the developmental model and the aim of normalisation but certainly in New South Wales some parents groups were active in providing residentials without any reference to the principle of normalisation discussed later in this chapter.
Funding in the voluntary sector relied initially upon self-help, donations from parents, fundraising and bequests. Other sources of funds became available as the Commonwealth Government yielded to sustained pressure from voluntary service-providers turned political agitators. Kewley described how the remarkable Bedwins, working from their base in the Civilian Maimed and Limbless Association of NSW, "...organised practically every organisation in the field in a concerted drive with a common aim " (Kewley, 1973 ; 336). The outcome was The Disabled Persons Accommodation Act of 1963 which provided capital grants towards the purchase or construction of dwellings for people employed or likely to be employed in a sheltered workshop. Later, in 1967, the Holt government introduced the Sheltered Employment Allowance, similar in its benefits to the invalid pension, but enabling disabled people to obtain sheltered employment, with the allowance, before their disability reaches a stage where they would qualify for the invalid pension (Kewley, 1973; 461).
In 1973 the Whitlam government introduced the Sheltered Employment (Assistance) Act which enabled local government bodies to borrow money to attract federal subsidies for hostels and workshops for people with handicaps. Under sustained pressure from the voluntary sector, principally involving ACROD (the Australian Council for the Rehabilitation of the Disabled) the government repealed the Sheltered Employment (Assistance) Act and the similar Handicapped Children (Assistance) Act, replacing them with the Handicapped Persons Assistance Act of 1974. This extended the program of assistance to a wide range of voluntary organisations and local government bodies, with the establishment subsidy increased from $2 for $1 to $4 for $1. Subsidy was available for rental as well as for construction and maintenance of facilities and an ongoing salary subsidy of 50% of salary was possible for approved staff.
The Principle of Normalisation and the Richmond Inquiry
Concern for people with handicaps in general and people with intellectual handicaps in particular was expressed in reports and investigations conducted in many states during the late 1970s (Committee on Mental Retardation, 1977; Board of Inquiry into the Needs of the Handicapped, 1980; Committee on Rights of Persons with Handicaps, 1981). These reports all use the concept of normalisation as a guiding principle in service provision for the handicapped. The term was coined in Denmark by Dr Bank-Mikkelson and defined as "letting the mentally retarded obtain an existence as close to the normal as possible" (Committee on Mental Retardation, 1977; 3). Normalisation for the child means living at home or with foster parents if at all possible, unless special circumstances require a departure from the normal pattern. For the young adult, normalisation means leaving home to live in the most independent manner that is compatible with the capacities and desires of the individual. Among the pre-requisites for successful pursuit of normalisation are training in skills for independent living and a wide range of support services, initially for the family and later for the mature individual (when they are no longer with the family). In the absence of appropriate supports the effect of normalisation is to place the full burden of care upon the family, in particular upon the mother and normalisation pursued as an alternative to state-provided institutional care without parallel provision of community support services is vulnerable to a powerful feminist critique . For example it is argued by Finch and Groves (Wyndham, 1983) that community care policies for the elderly are likely to rely to some extent on womens' unpaid domestic labour and may require them to give up opportunities for paid employment.
Another criticism of normalisation claims that proponents of normalisation offer empty rhetoric instead of offering genuine assistance to parents who either have placed their offspring in care, or wish to be able to do so in the future. These critics claim that the institutions offer the assurance of reliable and safe care without the risks and uncertainty that accompany as yet unproved alternative forms of accommodation. They claim that governments are receptive to the rhetoric of normalisation because it purports to offer a cheaper alternative to hospitals.
The debate over normalisation and community care has recently focussed on the recommendations of the Richmond Inquiry, particularly the objective of eliminating some 1300 places in state hospitals and creating 1500 places in small scale community residentials. Strong feelings are aroused, with critics claiming that cost cutting is the dominant motive, that the care of the handicapped is being inappropriately diverted to the private sector, that the wishes of parents and patients are being overridden and the health workers are being forced to accept inferior industrial arrangements.
"The Health Minister, having achieved the shameful closure of the inner city hospitals, is now turning his attention to cost-saving in the psychiatric services in NSW."
"In order to justify his brutal cost-cutting intentions, the Minister, through Richmond, has picked up on the trendy rhetoric of the day, as expressed by well-meaning groups like the.NSW Council for the Mentally Handicapped and a few other like-minded bodies" (Haines, 1983).
A handbill authorised by the "Save Peat Island Committee" asks "Would you like to be thrown out of your home of thirty years just to suit a Government whim?"
"Would you like to be made to live in sub-standard housing liable to manipulation and at the mercy of unscrupulous people?"
On the other side, the Chairman of the Council for the Mentally Handicapped has pledged to support the Health Minister so long as he is seriously promoting the rights of for the intellectually handicapped (Moss, 1983). And a newspaper advertisement supported by various groups including the Handicapped Persons Alliance and the Australian Council for Rehabilitation of the Disabled describes the report as "a Report born out of an overwhelming call from New South Wales citizens who have an intellectual disability, their family and their friends".
Clearly any steps that are taken towards implementation of the Report's recommendations will have a major impact on the pattern of expenditure on services for the intellectually handicapped. The Health Minister has pledged that there will be no cost-cutting and an additional $9 million per annum will be provided for three years to build up a network of community facilities. Only after this will "underused resources at existing institutions" be sold, with the proceeds being used to further build up community based facilities for the mentally ill and the intellectually handicapped (Brereton , 1983).
The future level of funding to services for people with intellectual handicaps and the composition of these services will clearly be matters of great interest to all participants in the current debate. This thesis provides baseline figures on funding almost immediately prior to the Richmond Inquiry and so should prove useful for continuing evaluation of the impact of any change in policy.
25 years later it seems that the asylums were emptied almost completely but there has been no follow-up to this study to assess the new pattern of distribution of resources. Nor has the "normalisation" been subjected to rigorous evaluation. It is widely believed that the people moved out of the hospitals but the resources required for their care in the community did not follow them. Evidence on this matter is only anecdotal and journalistic but it flags an issue that calls for investigation. Do not hold your breath waiting for that to happen.