Emerging trends in the support of people with disabilities in Australia

by Trevor R. Parmenter, Centre for Disability Studies, University of Sydney

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The vast Australian island continent (7.7 million square kilometres or 3.0 million square miles) is a multicultural society populated by 22 million people, with about 65% living in the capital cities of the six states (New South Wales, Victoria, Queensland, Western Australia, South Australia and Tasmania) and its two territories (Northern Territory and Australian Capital Territory). The majority of the population live in two coastal regions—the largest along the eastern and south-eastern seaboard and the smaller along the south western coast. Almost three-quarters of the Australian land mass is relatively uninhabited owing to its barren nature. Owing to this tyranny of distance, governments and human services organisations are presented with immense difficulties in providing adequate support to these isolated communities including many of its indigenous aboriginal population.

Australia has a federal system of government with the six states and two territories having their own legislatures, a situation similar to Canada and the United States. However, owing to its colonial history, the Australian parliamentary structures are based upon the British Westminster system.

Provisions for people with a disability—Historical overview

Progress in the field of disability has very much mirrored that of other countries in the western world, albeit perhaps being a little slower in achieving the same or similar goals. In particular, in relation to those with intellectual disabilities there is still considerable inequity in terms of quality of life and well-being. However, it is noteworthy that the Australian Federal Government enacted legislation in 1910 to provide the first invalid pension scheme for people with disabilities. Australia developed large institutions for the ‘mentally ill and defectives’ very early in its history, with New South Wales and Tasmania leading the way in 1811 and 1829 respectively. At the beginning of the twentieth century, prior to the provision of formal services for people with disabilities, it was left to families to care for their children with disabilities without assistance. Many children with disabilities were viewed as ineducable, and parents were advised to ‘put your children away and get on with your lives’ (Cocks 1998).

The Social Services Act of 1947-1977 broadened the range of pensions, benefits and allowances. It also led to the establishment of the Commonwealth Rehabilitation Service (CRS), which provided a medically-oriented rehabilitation program to people with physical or sensory impairments in a number of large hospital-like centres situated in the capital cities of each of the states. This period strongly reflected the ‘medical model’ approach to the delivery of disability services.

The role non-government agencies could play in service provision was recognised in 1967 by federal legislation which allocated funds to subsidise the establishment of educational, residential, vocational and day-activity programs. The combination of the medical and welfare/charity models of service saw a rapid increase in congregate residential and vocational programs for children and adults with disabilities throughout Australia in the period following World War II— especially in the 1960s and 1970s. The Handicapped Persons’ Welfare Assistance Act of 1974 extended government subsidies to activity therapy centres for people deemed to be unable to be placed in sheltered workshops. The activities in these centres, however, were essentially similar to those in the sheltered workshops. The major difference was the level of government support. It is important to realise that both sheltered workshops and the activity therapy centres emerged as a place where people with disabilities could be involved in ‘gainful’ activities. For the majority of families it was a place where their disabled sons and daughters with disabilities could fill their day, participating in ‘busy’ work and often social activities. In many ways it was an extension of the special school, which a majority had attended. Owing to poor productivity, wages were minimal, with significant disincentives for regular employment options.

During the 1970s and 1980s, the focus of disability services shifted to a training/ education model, bolstered by research from a behavioural perspective which maintained that all people with disabilities could learn and develop skills. Services became focused on individual programs and plans and it was generally believed that people with disabilities would graduate from a segregated environment through to less restrictive environments, depending on their level of skill acquisition. However sound this policy may be, the gap between research and practice remained large, in part owing to the failure of governments to support adequate staff training.

Winds of change

During the 1970s Australia became influenced by a number of social, philosophical and political forces, including the emergence of the independent living movement for people with physical disabilities and the growing acceptance of the normalisation principle for people with intellectual disabilities as enunciated by Nirje (1969) and Wolfensberger (1972).

The election of a reformist federal government in 1972 provided a change in the essentially conservative climate that had permeated the welfare services in Australia. Federal government funds were made available to absorb privately-run special education facilities into the public education system and to provide training for special-education teachers. Research into disability issues also received a boost, one example being the support of a ten-year program to trial and evaluate vocational training opportunities for people with a mild intellectual disability which would lead to open employment placements. (Parmenter et al. 1986).

Perhaps one of the most significant developments was the International Year of Disabled Persons in 1981, which had a profound effect in creating awareness about disability in Australia and putting disability clearly on the human services agenda. A Survey of Handicapped Persons was conducted by the Australian Bureau of Statistics (ABS); this was the first time that national information had been collected on the numbers of people with disabilities, the nature of their disabilities, the services they needed and the extent to which these needs were being met. This survey was firm evidence that a national approach to meeting the needs of people with disabilities was slowly developing (Disability WA 2008).

In 1983, the federal government sponsored three initiatives that were to have a profound effect upon disability service provision in Australia. The first was the funding of an Australian chapter of Disabled People’s International; the second was the establishment of the Disability Advisory Council of Australia that consisted of people with disabilities or their advocates, replacing earlier advisory panels that consisted mainly of service providers; and the third initiative was the setting up of the Handicapped Persons Review, a landmark development in the Australian disability scene.

Another important initiative in 1985 was the Home and Community Care Program (HACC) for carers who were identified as a target group in their own right. Community-based respite services were established, including in-home respite, in the recognition of the need for carers to take a break. This program especially targeted children and older people who, because of their disabilities, required support at home. This program is a joint venture between the state, territory and the federal governments.

Legislation

The importance of government legislation which underpins the provision of government financial support to children and youth with disabilities cannot be over-emphasised. Despite its importance, most disability legislation does not automatically ensure entitlement to a service.

Commonwealth Disability Services Act

The Handicapped Persons Review led to the report New Directions (Grimes 1985) which culminated in the Commonwealth Disability Services Act (1986). The nationwide Handicapped Persons Review took the unprecedented step of involving people with disabilities and their families as part of an extensive and comprehensive consultation process—something now taken for granted. This involvement indicated a high level of criticism of existing services and a desire to have improved access to mainstream services. The Commonwealth Disability Services Act sought to influence the reform agenda for disability services by reshaping the funding which was available. Two major reforms from this Act required that large accommodation services should be downsized, and sheltered workshops should be replaced by community-based employment. One of the outcomes of the review was the promulgation of positive consumer outcomes as a basis for program development for people with disabilities. The key outcomes were:

  • A place to live in the local community
  • Paid employment
  • To be competent and self-reliant
  • The opportunity to be involved in a range of community relationships and activities
  • Security
  • Community respect and acceptance.

The report was especially critical of sheltered workshops and activity therapy centers—including the types of work performed, low wages, poor working conditions and their inherently segregated nature. In respect of their training role the Review found that training appeared to be an end in itself, was not time-limited, and rarely led to open employment. In this respect the review questioned the quality of training provided by inexperienced and unqualified staff.

The Disability Services Act (1986) signaled a significant paradigm shift in the operation and funding of government assisted programs. It basically attempted to take the initiative for the planning and execution of disability services away from the powerful not-for-profit service agencies and to shift them to consumer groups. However, the shift was essentially from the service sector to the bureaucratic machinery of government.

As is often the case, these reforms did not necessarily run smoothly. Parents, who had been responsible for the establishment of sheltered workshops and nursing homes some decades earlier, were justifiably concerned about their possible closure. Agencies that attempted to introduce reforms rapidly, or alternatively ignored them altogether, were caught in the crossfire of reform. While some agencies embraced the opportunity for change and took advantage of the federal government financial incentives to regroup; others were slower to respond, which was to some extent confused by a mix of funding sources. In addition, agencies which were funded partly by state as well as the federal government, were unsure as to whether states and territories were obliged to follow the policy lead established by the federal government.

Commonwealth-State Disability Agreement

There has always been a diversity of responsibilities between the Commonwealth and states/territories in Australia, with a subsequent fragmentation and disparity in services which is continuous—although many attempts have been made to rationalise these respective responsibilities. With the advent of the first Commonwealth.State Disability Agreement in 1991, the states and territories took on the administrative responsibility for family support, recreation, community access, alternatives to employment, and accommodation services, while the Commonwealth assumed responsibility for employment services. The responsibility for the education of all children, and those with a disability, remained with individual state and territory governments. As indicated above, up until 1972 many children with a disability had been denied access to public education services and were educated in private non-government schools

The current situation with special reference to provisions for people with an intellectual disability

The 2003 Survey of Disability, Ageing and Carers conducted by the Australian Bureau of Statistics (ABS 2004) revealed that 588,700 people (3% of the population) had an intellectual disability. Approximately 60 % of people with an intellectual disability have severe communication limitations which distinguished them from other disability groups for which severe limitations are generally more prevalent in the areas of self-care and mobility. Nevertheless, people with an intellectual disability are also likely to have severe limitations in all three of the core activities of daily living—self-care, mobility and communication. Analysis conducted by the Australian Institute of Health and Welfare (AIHW 2008, p.2) of the ABS data led to the following observations:

…need for help with core activities may not fully reflect the level of support that an individual with intellectual disability requires to participate in society. Even though they may function relatively well in the familiar routines of self-care and domestic life, and be independently mobile, people with intellectual disability often have considerable difficulty in managing emotions and relating to other people. It is therefore important to also consider the level of support that is needed in non-core activity areas, especially making friendships, maintaining relationships and interacting with others.

Education

As people with an intellectual disability experience difficulties adjusting to changed circumstances and unfamiliar environments, state and territory jurisdictions have spent considerable efforts in supporting the transition of children from home to school and from school to work and post.school study and participation in meaningful activities. Despite this effort, there is still not a well articulated process that addresses the need to commence the transition process from school to adult living earlier in the student’s secondary schooling. There are also immense challenges in getting interagency collaboration at the post-school level.

All Australian jurisdictions espouse a policy of inclusive education, but the provision of segregated settings prevails with special schools and special classes attached to regular schools remaining a feature in some jurisdictions, especially for those with high support needs. For instance in 2003, 45 % of students with an intellectual disability attended regular school classes, compared to 95% of students with physical or diverse disability. The most common problems faced by this population were learning and social difficulties.

In 2003, while many students commenced school in a regular class, a significant proportion of those with a severe disability moved to a special class in a regular school (38%) or special school (17%) (AIHW 2008). High proportions of school students with an intellectual disability had difficulties in learning, fitting in socially and communicating.

The Disability Discrimination Act (1992) and the accompanying Disability Standards for Education provide a legislative base for the principle of inclusion, but schools can appeal on the grounds of unreasonable hardship concerning the enrolment of students with a disability.

Post-school experiences

Analysis of age cohorts between 1998 and 2003 for young adults with an intellectual disability revealed that:

  • only about 9% of those who were 20-24 years in 2003 were in post-school study
  • they were less likely to transfer to the labour force than their age peers without a disability
  • labour-force participation rates dropped significantly over the five years 1998.2003, without a corresponding increase in their participation in alternative day-activity programs.
  • they were more likely to be unemployed, had never married, relied upon government pension or allowance as their main source of cash income, and were less likely to be wage or salary earners.(AIHW 2008).

Post-school options other than further study, usually in a technical and further education facility, include open-employment programs funded by the Department of Education, Employment and Workplace Relations (DEEWR), and supported employment in an Australian Disability Enterprise funded by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). The latter program provides a vocational option for adults with an intellectual disability, usually in a segregated factory-type environment.

As is the case in several industrialised economies, the proportion of people with an intellectual disability who continue to work in a segregated environment has remained fairly constant, despite research which has shown that they can be supported in more inclusive settings.

As indicated above, state and territory jurisdictions have responsibility for the provision of alternative programs to employment. In the state of New South Wales two options are provided: transition-to-work and community participation. The first of these is time-limited, with the goal being to place people in a regular job. Community participation is not time-limited; its goal is to provide a meaningful day activity which will lead to sound outcomes to enrich the person’s quality of life.

Supported living

Since the early 1980s there has been a significant trend to close large congregate care facilities. In some jurisdictions this has been achieved, but in New South Wales, for instance, well over 2500 people are still accommodated in institutional settings. The main option provided has been a traditional group home, generally housing up to five people. The other favoured option for people requiring lower support has been semi-independent living in smaller units, with drop-in support. As in other countries where similar patterns have emerged, there is serious questioning as to whether these approaches have fully achieved the promise of community-based living. There is no question but that the opportunities for a better quality of life are superior to those in a congregate care facility, but issues around costs and whether better outcomes are being achieved remain moot.

Families and carers

The movement away from institutional living to in-home care has seen people with disabilities living and being cared for in their own homes, with their families or with foster families. This has generally been accompanied by the responsibility of care transferring to family members, most frequently the mother, with varying degrees of access to more formal forms of support. In 1998, 99% of children with a disability aged 0-14 years lived in households. Of these children, 211,900 (or 72%) lived in a couple-parent family, and 83,700 (28%) lived in a single-parent family (AIHW 2004). There were an estimated 54,600 people (the great majority of whom (91%) were mothers) who were primary carers of co-resident children with a severe or profound limitation. Many of these co-resident primary carers of children, about 1 in 2 (48%), reported needing more support, more respite care, and financial assistance. The latter two points were indicated as their greatest needs.

The socioeconomic profile of families that have a family member with a disability indicates a strong association between the prevalence of disability and low income. The effects on a family of childhood disability have received extensive research attention. Earlier studies tended to focus on the mother, principally in her role as primary care giver, but more recently the scope has expanded to include other family members— fathers, siblings and grandparents.

Respite

One of the most important parts of caring for a child with a disability is the need to maintain the health and well-being of the carer. The need for regular respite can be the difference between coping and not coping. Respite means anything that provides a break from caring, with the most effective respite being regular opportunities to allow time for essential relaxation. There are many respite services that provide either in-home respite where a carer comes to the home or out-of-home respite, where the child attends a service.

This may be regular planned respite or it might be an emergency one-off type of care. Unfortunately, services are not integrated and funding is limited. Most services have particular criteria that need to be met for eligibility—for example, some services are only for children with mild/moderate disabilities, while others are for those with more severe disabilities. Many respite packages are quite flexible in the way they can be used, but funding is often outstripped by demand.

Health

Australia’s Welfare (AIHW 2007) indicated that access to generic health services for people with disabilities is often restricted by issues such as insufficient training of the health workforce, communication difficulties associated with some disabilities, and the misinterpretation of symptoms. The University of Queensland recently completed a trial of a comprehensive health assessment program for people with intellectual disability, finding significant improvements in several areas compared with the control group. These included the detection of new disease, which increased by 1.6 times. Health promotion and disease prevention activities also increased. These effects were due to a more systematic approach to gathering health information, which in turn improved health review and planning (Lennox , Bain, Rey-Conde, Purdie, Bush and Pandeya 2007).

Durvasula and Beange (2001) reviewed emerging evidence that people with intellectual disabilities have poorer health, in terms of lower life expectancy and more prevalent physical and mental health problems, than the general population. They also found that people with an intellectual disability do not access health services (in particular, preventive health care) to the same extent as the rest of the population. They were less likely to undergo health screening and were less exposed to health promotion than other patients attending general health services.

In the 1990s three academic research, training and clinical service centres for people with a developmental disability were established in conjunction with medical schools at Monash University, Melbourne, the University of Sydney and the University of Queensland, Brisbane.

Need and unmet demand

Repeated surveys have shown that there is a significant degree of unmet demand for a full range of services including employment, community access, accommodation and respite services for people with a disability in Australia. A recent report by the National People with Disabilities and Carer Council (NPWDACC) highlighted the situation. Its Chair, Rhonda Galbally, reported:

The result is Shut Out, released this week by the National People with Disabilities and Carer Council (visit: www.ourcommunity.com.au). This is the first comprehensive picture of what contemporary life is like for Australians with a disability and their families. It is a shocking picture. The report finds that Australians with a disability are often isolated and alone. Their lives are a constant struggle for resources and support. In short, the national notion of the ‘’fair go’’ does not seem to apply to them.

More than 56 per cent of participants said they had experienced difficulties with social inclusion and community participation. More than 39 per cent said human rights and access to justice was a continuing problem. Thirty-four per cent identified problems with employment, while a further 37 per cent raised the issue of the cost of living with a disability.

Too many parents expressed frustration with the education system. Other participants identified problems with transport, health care and getting into buildings. In short, accessing the very services and activities that most in the community take for granted.

New winds of change

United Nations Convention on the Rights of Persons with Disabilities
In July 2008, Australia ratified the UN Convention on the Rights of Persons with Disabilities, making Australia one of the first Western countries to do so and at the time, the thirtieth country to complete this process. A year after signing the Convention, the Australian government will now accede to the Optional Protocol which establishes a complaints mechanism for breaches of the Convention. As a consequence, individuals or groups who exhaust all avenues of redress available in Australia will be able to take complaints to the United Nations Committee on the Rights of Persons with Disabilities. The Committee can investigate the complaint and make recommendations to the government concerned. The Committee also monitors implementation of the Convention and all governments that have ratified the Convention are obliged to submit regular reports to the Committee on how the rights are being implemented. An Australian, Professor Ron McCallum AO, is a member of the 12.person Committee.

Accession to the Optional Protocol will strengthen the implementation of the UN Convention in Australia and the National Disability Strategy which will establish a framework for that implementation.

National Disability Strategy

In December, 2007, a new reformist federal government was elected under the leadership of Prime Minister Kevin Rudd. In forming his new Ministry, Prime Minister Rudd indicated his government’s commitment to improving services for people with a disability by the appointment of Mr Bill Shorten MP, as Parliamentary Secretary for Disability and Children’s Services. The development of a National Disability Strategy was one of Mr Shorten’s first initiatives. The Strategy aims to address the barriers that are faced by Australians with disability and promote social inclusion. It will be developed in close consultation with the Australian community, disability and carer peak bodies, employers, and industry experts.

The development of the National Disability Strategy includes the establishment of the 28.member NPWDACC commissioned to provide expert advice to government on the development and implementation of the Strategy. It includes people with disability and their families, carers, industry and union representatives and academics.

Do we need a complete paradigm shift in the way we design effective supports and services?

The Disability Services Commission of Western Australia is leading the way in innovative planning and thinking concerning the way people with a disability are supported to live a life of their choosing (See Community Living Initiative on the web site www.disability.wa.gov.au). Eddie Bartnik, one of Australia’s forward thinkers in the disability field, has provided a number of fundamental ideas concerning the design of effective supports and services:

  • Get to know the people well over time, person by person
  • Make connections to the local community
  • Have positive values and assumptions about individuals, families and communities with safeguards as needed
  • Build capacity versus ‘providing’ services
  • Ask the right starting question: ‘What is a good life?’ versus ‘What services are needed?’

He further suggests a number of key principles in planning pathways:

  • Planning is often equated to services or funding, rather than to a good life
  • Individuals and families can be caught waiting in a system that places focus on critical need
  • Some people get funding, but still can’t find what they want
  • Others may have paid support but few friends
  • New planning pathways are needed that build on people’s strengths, relationships and resources so they can start to create a new life and not just wait.

A key factor in the attempts to achieve ‘a good life’ is the emerging principle of individualised funding which is being adopted in some jurisdictions, and is being trialed in others. This principle is being embraced wholeheartedly by some people with a disability and families, but it is being viewed cautiously by others. As governments increasingly apply this principle it will challenge service providers to reassess their roles.
From a philosophical perspective, individualised funding is supported by the principles of self-determination and family empowerment. The challenge is to change the mind.set that has developed over the past decades where access to a service has been seen as the major salvation in meeting a person’s needs. The concept is only one part of the process and I suspect we shall need to closely monitor the effects such a ‘sea change’ might have upon the lives of a person with a disability and their families.

From segregation for the ‘insane’ to a good life as part of the community, the journey towards full community inclusion for people with disabilities has spanned more than a century of radical change and remarkable progress. The 21st century, however, is providing its own set of challenges—not least a heightened expectation within the community for increased and enhanced services and supports. For many years, people who have a strong commitment to disability have campaigned for increased levels of funding in order to provide better services. There is no doubt that funding can make an enormous difference to the lives of people who require additional supports. However, it should also be remembered that we need to focus on that other essential element of a quality service—a good quality of life. The challenge for disability administrators is to provide support to friends, families and their communities to enable those worthwhile elements of a high-quality life, which cannot be bought.