National Disability Strategy - Community consultations and submissions report 2009  

Many of the large institutions that housed generations of people with disabilities—out of sight and out of mind—are now closed. Australians with disabilities are now largely free to live in the community. Once shut in, many people with disabilities now find themselves shut out. People with disabilities may be present in our community, but too few are actually part of it. Many live desperate and lonely lives of exclusion and isolation. The institutions that once housed them may be closed, but the inequity remains. Where once they were physically segregated, many Australians with disabilities now find themselves socially, culturally and politically isolated. They are ignored, invisible and silent. They struggle to be noticed, they struggle to be seen, they struggle to have their voices heard.

What you will read in this report is their attempt to break down the walls of silence and finally have their story told.

In late 2008, the Australian Government released a discussion paper asking the community to respond to a series of questions about their experience of disability (see Appendix A). The consultations were intended to inform the development of a National Disability Strategy. Reflecting the Australian Government’s commitment to social inclusion, the aim of the National Disability Strategy is to ensure that people with disabilities have the opportunity to fully participate in the economic, social and cultural life of the nation. Developed by the Commonwealth in partnership with state and territory governments, the National Disability Strategy offers an unprecedented opportunity to articulate a clear vision and to marshal resources towards the achievement of common goals. It will galvanise and direct coordinated action between all levels of government to close the gap between the lived experience of people with disabilities and the rest of the Australian community.

More than 750 submissions were received in response to the discussion paper, more than half of which were from individuals and the remainder from a range of organisations (see Appendix B). This overwhelming response from ordinary Australians, so often excluded from the process of policy development, is an important indication of the depth of feeling among people with disabilities and their families, friends and carers. They have long called for change. Now they want to see it.

More than 2,500 people also attended consultations in capital cities in every state and territory of Australia, as well as in regional and remote areas (see Appendix C). These sometimes fiery, often sad and occasionally funny meetings provided unique insight into the day-to-day struggles of Australians with disabilities.

All direct quotes in this report are drawn from the submissions and material obtained during the consultation process. In some cases identifying information has been removed to ensure anonymity, but otherwise all quotes preserve the original words of the writer or speaker.

While the issues raised were many and varied, a clear picture emerged from the consultations and submissions. People with disabilities may be present in the community but most do not enjoy full participation in it. Discrimination and exclusion are frustrating features of daily life. People in wheelchairs cannot access the public facilities taken for granted by others in the community, such as playgrounds, swimming pools, cinemas, restaurants, hotels and cafes. Children with disabilities find themselves excluded from local kindergartens and schools. Qualified and competent candidates for jobs are rejected because of their disability. People with mobility aids have difficulty regularly accessing public transport. People with various disabilities are unable to access the aids, equipment and technology essential to their daily functioning, and are unable to access the support required to get them out of bed in the morning.

The general public believes much has changed in the past 30 years. And it is true that important gains have been made. But the prosperity of recent times has not been shared equally. People with disabilities feel forgotten. The tales told in the submissions are heart-wrenching and distressing. Page after page tells of suffering and despair. There is also enormous frustration and anger at a lack of progress after so long.

But there were also tales of survival, of immense personal strength and determination. Again and again, people with disabilities and their families, friends and carers demonstrated their resilience. These were tales of success. Many people demonstrated considerable courage in telling their stories in submissions and at public consultations. Their willingness to reveal personal details in such a public manner was an indication of their deep desire and determination to see change.

Many people described their lives as a constant struggle—for support, for resources, for basic necessities, for recognition. Over and over participants made the comment that it should not require such extraordinary effort to live an ordinary life.

Main findings—an analysis of the submissions

The discussion paper asked people with disabilities and their families, friends and carers to identify the main barriers to their full participation in the economic and social life of the community. The following table summarises their responses.

1. As some responses referred to multiple ideas, analysis of the responses enabled multiple ideas to be coded. There are therefore more themes than submissions and percentages add up to more than 100 per cent.

Social exclusion and discrimination

A lack of social inclusion and the multiple barriers to meaningful participation in the community faced by people with disabilities were the most frequently raised issues in the submissions and consultations. More than half the submissions received (56 per cent) identified exclusion and negative social attitudes as critical issues. People with disabilities and their families, friends and carers reported daily instances of being segregated, excluded, marginalised and ignored. At best they reported being treated as different. At worst they reported experiencing exclusion and abuse, and being the subject of fear, ignorance and prejudice.

People with disabilities believe little progress has been made in challenging prevailing attitudes towards disability. Submissions suggested that there are still widespread misconceptions and stereotypes informing the attitudes and behaviour of service providers, businesses, community groups, governments and individuals.

As a result, discrimination is a feature of daily life for many people with disabilities and their families. More than 39 per cent of submissions identified discrimination and rights as a vital issue, with one submission noting,

Submissions argued that discrimination is both systemic and systematic, entrenched in the everyday practices of government, businesses, community groups and individuals.

One submission told the story of a child care centre that refused to provide care for a child with an intellectual disability. Another told of a young man with a disability denied a vital organ transplant because of his disability (but who was then told he would, of course, be welcomed as a donor).

Proposed solutions varied widely. Some saw the role of the National Disability Strategy as establishing a social inclusion framework to underpin all policies and programs. Many called for an end to segregated services and options for people with disabilities, and their families, friends and carers, which people believed only reinforced and exacerbated prevailing attitudes. They sought a more integrated approach to support and greater availability of choice. The invisibility of people with disabilities and the dearth of independent advocacy and leadership opportunities also means too few people with disabilities have meaningful opportunities to contribute to the process of political and policy change.

Lack of services and support

Disability services are intended to provide people with disabilities and their families, friends and carers with the assistance they need to fully participate in daily and community life. More than half of the submissions received during the consultation process (56 per cent) said that services and programs act as a barrier to rather than a facilitator of their participation. The disability service system was characterised as broken and broke, chronically underfunded and under-resourced, crisis driven, struggling against a vast tide of unmet need. Services were unavailable or infrequent, unaffordable or of such poor quality as to be of little benefit. Respondents felt that more effort went into rationing services than improving them. Many said that the system is characterised by a one-size-fits-all approach that offers very little choice or flexibility. Programs and services were built around organisational and system needs rather than the needs of clients. In a democratic country as wealthy as Australia, many found it absolutely unacceptable that they are unable to access the support and services required to achieve even a basic quality of life.

Importantly, many argued that the service system is so fundamentally flawed as to be beyond bandaid solutions, requiring a paradigm shift to deliver lasting change. Many submissions suggested that both systemic reform and greater resourcing are essential. They argued that the service system needs to move away from a welfare model of service provision to a person-centred approach that sees services not as charity but as a social investment in realising the potential of people with disabilities.

The need for a lifetime care and support scheme

A significant number of submissions argued that the fundamental reform required to achieve lasting change in the disability service and support system should be extended to the funding of the system itself. These submissions made it clear that despite recent commitments to an increase in resources, the system is unable to meet current need and has limited capacity to meet anticipated increases in demand. Respondents also spoke of a pressing need to address inequities in the system, which result in people with disabilities receiving different levels of support depending on how their disability was acquired. According to these submissions, the only answer to the problems confronting the system is to create a model of funding in which resources are available irrespective of changes to the economic climate or variability in political will. While details varied, these submissions argued that a lifetime care and support scheme would remove existing inequities and provide the resources needed to ensure people with disabilities are able to reach their full potential and live as independently as possible.

The employment experience of people with disabilities

The opportunity for meaningful employment is essential to not only an individual’s economic security but also their physical and mental health, personal wellbeing and sense of identity. Unfortunately too few people with disabilities are able to access meaningful employment. Negative attitudes and misconceptions about disability means few employers—whether government, non-government or corporate—appear willing to employ anyone with a disability. In some cases there was clear discrimination, with qualified candidates reportedly sidelined solely because of their disability. People with a history of mental illness or an intellectual disability appeared to be particularly stigmatised. In other cases, employers seemed unwilling to employ a person with a disability due to misconceptions about the cost of modifications and adaptive technology.

Despite having the ability and willingness to work, many people with disabilities reported frustration at their reliance on the Disability Support Pension. The high cost associated with living with disability relative to the level of the pension was seen as restricting the ability of people to live independently and enjoy a decent standard of living. People with disabilities and their families, friends and carers reported living lives of ‘fear and desperation’, despised by many in the community for their reliance on the pension, yet unable to access the support they required to move off it. Gripped by poverty, the cost of basic necessities was sometimes even beyond them. While the consultation process concluded before the recent Budget announcement of an increase to the Disability Support Pension and changes to eligibility rules, these changes were welcomed by many in the community as an important step in addressing the high costs associated with living with a disability.

Negotiating the built environment and accessing information

More than 27 per cent of submissions said that lack of access to buildings and facilities is a barrier to full participation in the community, while 29 per cent identified lack of access to transport as a significant barrier to inclusion. There was considerable frustration at the slow pace of legislative and policy change to ensure universal design principles are included in the development of all new public and private buildings, as well as the painfully slow process of modifying existing structures. There was frustration, too, at the slow place of transport reform, which in some cases is being carried out over a 30-year timetable. Many submissions noted that lack of access to public transport often forces heavy reliance on the expensive and sometimes unresponsive taxi system.

But for some people with a sensory impairment or intellectual disability, access issues go beyond structural features. Submissions noted that for these groups, access to information remains problematic—information is still rarely provided in alternative accessible formats, including plain English versions.

The education experience of people with disabilities

Education determines more than a child’s economic future—it is also critical to a child’s social and emotional development, to establishing a sense of identity and a sense of place in the world. It is therefore of considerable concern that 29 per cent of submissions reported frustration with the education system. Most submissions noted that the system has little capacity to meet the needs of students with disabilities. The system was characterised as chronically underfunded and staffed by teachers who received little or no training with regard to disability. Submissions reported widespread ignorance and fear of disability and little or no promotion of the benefits of inclusion. Parents reported particular frustration at their lack of choice of educational setting and the desperate lengths they were forced to go to in order to ensure their child had basic needs addressed. Most sadly reported that they believed their child with a disability was only receiving ‘second best’.

The social experience of disability

Social isolation emerged as an important issue confronting people with disabilities. The Australian Bureau of Statistics estimates that 15 per cent of people with disabilities aged 15 to 59 (or 287,500 individuals) live alone compared to 6.8 per cent of people without disabilities. ² For some people with disabilities, the years of isolation and exclusion have had a profound impact on self-worth and self-esteem.

Submissions from families, friends and carers and the organisations that represent them were characterised by their great love for the people they care for. Many detailed the extraordinary lengths they go to every day to ensure their loved one has the same opportunities that others in the community take for granted. But the submissions also demonstrated that the experience of caring for someone with a disability is often a lonely one. Family, friends and other carers reported feeling abandoned by both government and the community and felt there was too little support for their all-important role. Many expressed frustration that they alone were left to fill the gaps in the service system. As a result, many argued that a significant proportion of their needs would be met if appropriate services, programs and supports for people with disabilities were routinely available. Submissions argued that greater support and flexibility for families and carerswould ensure that they were able to continue in their important role.

The way forward—implications for the development of the National Disability Strategy

The National Disability Strategy represents the first time in this country that disability policy will be underpinned by a whole-of-government, whole-of-life approach. In outlining a high-level strategic vision, submissions argued that the strategy must ensure that there is coordinated and comprehensive planning across all portfolios and between all levels of government. In developing the strategy, the government must consider how current disability and mainstream policies, programs and services operate, how they can work together more effectively and what new initiatives are needed. Importantly, the strategy must recognise the complexity of people’s lives and the intersection and interdependence of many areas.

From its review of submissions and consultation material, the National People with Disabilities and Carer Council believes that the National Disability Strategy should act as an overarching policy statement, setting the national view, establishing future direction and identifying priorities for people with disabilities and their families, friends and carers. It should address four strategic priorities:

• increasing the social, economic and cultural participation of people with disabilities and their families, friends and carers
• introducing measures that address discrimination and human rights violations
• improving disability support and services
• building in major reform to ensure the adequate financing of disability support over time.

While details varied, most submissions agreed that the strategy should consider the following key features:

• adoption of a coordinated national approach to enhance consistency across jurisdictions
• development of underlying principles that reflect the UN Convention on the Rights of Persons with Disabilities. Many submissions made it clear they expect the National Disability Strategy to realise the rights enshrined in the Convention. Without a strong strategy, many participants feared that the Convention would fail to change the lives of Australians with disabilities and become just another piece of meaningless rhetoric
• creation of an Office of Disability to coordinate efforts across portfolios and between levels of government
• implementation and monitoring of policies under the strategy by each level of government and all government agencies, with clear outcomes and performance measures
• provision of funding increases to advocacy and other non-government agencies to participate in monitoring and evaluation of the strategy.

The findings contained in this report will now feed directly into the development of the National Disability Strategy. Australian governments will continue to work throughout 2009-10 on the strategy with the advice of the National People with Disabilities and Carer Council and other stakeholders. Critical thinkers and subject experts will be brought together to develop innovative strategies and actions to tackle identified priorities in each area along with appropriate outcomes and targets. And most importantly, an evaluation, monitoring and reporting process will be developed as a means of tracking the progress of the strategy to ensure real and meaningful change is achieved.

Conclusion

The closure of institutions and the promise of community inclusion was one of the great social policy changes of the 20th century. But the social and economic segregation that has followed is harder to dismantle. Closing doors is one thing. Making fundamental changes to our policies and programs, and changing the way we think, is another. But as the participants in this consultation told us, they can no longer accept anything less.

People with disabilities want to bring about a transformation of their lives. They want their human rights recognised and realised. They want the things that everyone else in the community takes for granted. They want somewhere to live, a job, better health care, a good education, a chance to enjoy the company of friends and family, to go to the footy and to go to the movies. They want the chance to participate meaningfully in the life of the community. And they are hopeful. They desire change and they want others in the community to share their vision. They recognise that governments cannot work in isolation and they want others to see the benefits of building more inclusive communities.

For years people with disabilities have been excluded, forgotten and ignored. Now they demand to have their voices heard. As one respondent noted, admitting failure is the first step in fixing things. This report details the way things are broken. Now begins the long process of repair.

2. Australian Bureau of Statistics, 2003, Disability, Ageing and Carers: summary of findings, cat. no.4430.0, ABS, Canberra, p.20.