Flow of Funds to Services for Intellectual Handicap
A Snapshot in 1983
Chapter 3: Evolution of the Structures of Care
Rafe Champion - Thesis
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.

Postscript 2008

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.

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