Shut Out: the experience of people with disabilities and their families in Australia - National Disability Strategy Consultation Report
REFERENCE: Commonwealth Government. (2009). Shut Out: the experience of people with disabilities and their families in Australia - National Disability Strategy Consultation Report. Retrieved. from http://www.fahcsia.gov.au/
Notes from the National Disability Strategy Consultation Report.
Prepared by Natasha Layton August 2009.
The full report is 90 pages long. The 8 pages contain the relevant sections relating to assistive technology, and some related issues (eg. poverty, housing, life domains). Direct quotes from participants are in italics.
Hundreds of voices from across Australia contributed to consultations for the strategy. The people who participated are, just like all other Australian citizens, individuals with their own needs, abilities, ambitions and priorities. They are united only by the experience of living with disability. Yet a consistent message from their contributions is the desire to have the same opportunities as everyone else for a fulfilling and productive life. Many said they face a constant struggle to obtain what the rest of the community would consider to be an ordinary life. They do not want special treatment—they just want the barriers removed so they can get on with living. The task that falls to us is to make the political, social and economic changes necessary to enable this to happen (iv).
For many years people with disabilities found themselves shut in—hidden away in large institutions. Now many people with disabilities find themselves shut out—shut out of buildings, homes, schools, businesses, sports and community groups. They find themselves shut out of our way of life. (vi).
We desire a place within the community! This place is not just somewhere to lay down our heads, but a place which brings comfort and support with daily living, friendship, meaningful work, exciting recreation, spiritual renewal, relationships in which we can be ourselves freely with others. And out of this great things may flourish. Perhaps we will begin to feel better about ourselves, to come to know ourselves as honoured, respected, accepted, yes, loved. To be healed from shame, feeling unworthy, undesirable, ugly, difficult, not smart enough, not sporty enough, not lovely enough.
And perhaps we might be freed from our terrible daily fears that it all won’t last, that more rejection is written into our lives. Maybe our dreams will no longer be filled with the traumatic fear of others pushing us around. Perhaps a time will come when we no longer have to protect ourselves from loss and can feel that this place is the place of creation, of re-creation, co-creation. Perhaps then our loneliness will fade. Perhaps then we will belong and our gifts (perhaps meagre, perhaps spectacular) freely shared. And from there will flow all the delights and tragedies of a life lived in the community, shaped not by exclusion and oppression but by everyday ordinariness (whatever that might be)! (vii)
Until the concept of disability disappears and is replaced by a society that is structured to support everyone’s life relatedness and contribution—until that day my life and opportunities and the lives of every other person who carries the label ‘disabled’ depends on the goodwill of people in the human service system. Goodwill is no substitute for freedom....Where once they were physically segregated, many Australians with disabilities now find themselves socially, culturally and politically isolated (1)
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. (2)
In this day and age, imagine if a person was told that they could only go to ten cinemas in Australia and to one of three sessions a week because of their gender, cultural background or religious beliefs. But as a deaf person, that is what I face.I am very limited in where I can go and when, to access things that other people take for granted. (4)
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 under-funded 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.
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. (5)
The need for a lifetime care and support scheme (5)
Negotiating the built environment and accessing information (6)
The education experience of people with disabilities (6)
The social experience of disability (7)
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. (7)
(people making submissions expect...) 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 (8)
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.(9)
In a society where the values that predominate are power and wealth, physical prowess and beauty, intelligence, competition, autonomy and self-control, many people with a disability are marginalised and devalued. It could well be that many people are fearful about engaging with and including people who live with a disability as a result of a lack of knowledge, and that people with a disability are treated as ‘the other’ rather than involved. (11)
If I lived in a society where being in a wheelchair was no more remarkable than wearing glasses, and if the community was completely accepting and accessible, my disability would be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have Spina Bifida. (12)
I do not expect to get access to the pyramids or Uluru but I do want to get into all of the library and all of the community centre. (14)
How we view impairment and disability has changed dramatically over recent years … although the impairment a person has is a reality, the disablement is caused by environmental and social barriers. (14)
(submissions called for )... more integrated approach to policies, programs and services. Others suggested broadening the aims of disability-specific programs and services from function and independence to social inclusion and community participation. Still others emphasised the importance of choice. (14)
2.2.2 DISCRIMINATION AND HUMAN RIGHTS VIOLATIONS
In 2008, the Australian Government ratified the UN Convention on the Rights of Persons with Disabilities. But as many submissions and consultation participants were quick to point out, ratification does not ensure compliance. The gap between the principles enshrined in the legislation and the lived experience of many people with disabilities was a recurring theme—in fact, the issue of rights and discrimination was raised in 39 per cent of submissions. People with disabilities reported experiencing discrimination in every aspect of their lives, (14)
It is not unusual for people to be left to sleep in their wheelchairs through lack of care hours to get them to bed, or for them to be left without a meal as there is no-one who can prepare it for them. (20)
They seem to spend more money on case managers than actual therapists.... There is a lot of waste and duplication of money, processes and procedures. Why can’t they talk with strategic policy makers on the same issues? HACC [the Home and Community Care program] is a federal and state program and local government throws in a few dollars. This delivers on average two hours of services a week. This requires massive infrastructure for people to stay at home for two hours a week for $12,500. Parents also expressed frustration at consistently being told to be positive and have high expectations—while at the same time being forced to paint the worst possible picture of their child and their needs in order to access support(20)
With the level of unmet demand already high, many people find themselves ‘defined out’ of services despite a very real need for assistance. Rationing has created a ‘shadow army’ of individuals who exist on the margins and who cannot meet strict eligibility criteria for support despite real and pressing needs. (20)
Many submissions praised the commitment of staff to their clients, and the dedication with which they carry out their work. They noted that staff often share their frustration with the system. They recognised that many in the service system feel constrained by circumstance, having inherited a highly managed, highly rationed, impoverished system in which the pace of change is frustratingly slow. Importantly, many argued that the service system is so fundamentally flawed that it is beyond mere bandaid solutions. These submissions maintained that both fundamental systemic reform and greater resourcing are needed to achieve lasting change. They argued for a 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. (21)
Given the complexity of the service system and its bureaucratic nature, it is not surprising that many proposals focused on improving and simplifying the system (39 per cent). A number of suggestions were made to improve accessibility and reduce red tape and waiting times. There was support for the creation of ‘one-stop shops’ providing information, advice and referrals. But it was also clear that many regard the disability service system as irretrievably broken. Merely increasing funding to meet unmet need was, while welcome, seen as insufficient. A fundamental change is required to create a system that truly places people with disabilities and their families, friends and carers at the centre and looks for creative, innovative solutions to meet their needs. Despite the fact that the rhetoric of ‘person-centred planning’ has become commonplace, many people felt that in practice very little has really changed. (22)
S is a 45-year-old woman who is blind, and who lives in regional Australia. She is employed, and plays an active role in her local community. S has a university degree in political science, and is a regular contributor to radio current affairs discussion programs. Despite having a detailed knowledge of Australia’s electoral system and being a keen participant in civic life, S had never been able to cast her own vote until the 2007 federal elections. She relied on family, friends, or electoral officials to complete her ballot paper. She thus could not cast a secret ballot, and had no way of verifying that her intentions were indicated correctly on the ballot paper.
She often votes ‘below the line’ as she has clear ideas about which candidates she wishes to support, and this lack of verification has always been a significant concern for her. In the 2007 federal elections, S was able to participate in the trial of accessible electronic voting. She had to travel 200 km to attend a polling station where the system had been set up, but although this caused her quite a deal of inconvenience, she undertook the six-hour journey so that she could vote independently for the first time in her life. She was able to use the system with its speech output (delivered through headphones) and was pleased that the system had the facility for her to review her ballot paper so that she could confirm her voting preferences. S reports that she felt empowered and affirmed by the experience of casting her own vote, and is lobbying for the system to be introduced in all Australian elections. (25)
Elsewhere in the world, people with disabilities have a legislated right to the aids, equipment and technology they require for daily living. No such right exists in Australia. As a number of submissions made clear, people with disabilities and their families, friends and carers find it incredibly difficult and sometimes impossible to access the aids and equipment essential to daily functioning. Their ability to lead an independent life is severely compromised as a result. The provision of aids and equipment is intended to ensure that people with disabilities have the required resources to participate fully in community life. Sadly, more than 20 per cent of submissions reported that a lack of aids and equipment acted as a barrier to their participation in the community. (25) As one submission noted, There is much talk of community involvement and participation, but when individuals don’t have access to the necessary mobility and communication tools to partake, then it is not possible. (26)
In another case a family required a hoist to lift their adult son in and out of bed. But they were unable to apply for funding until an occupational therapist conducted an assessment. The waiting time for an assessment was 18 months. (26).
Difficulties with eligibility were particularly experienced by those who required wheelchairs or hearing aids. A number of submissions noted that government subsidies for hearing aids are not available for working people over the age of 21. Lack of availability or lengthy waiting periods forces people with disabilities and their families into purchasing aids and equipment themselves, often at considerable expense. When beyond the budget, people with disabilities are forced to go without for extended periods of time. Either way, the quality of life of people with disabilities and their families is significantly compromised. (26)
Submissions also discussed difficulties with fitting, adjustments, modifications and repairs. Some noted that even when available, equipment is not always suitable. Why does my daughter have a communication device that talks in a male American computerised voice? Why can’t she have a communication device that has a voice of a young Australian girl? (26)
….there is a tendency to rely on high technology when in fact for many people, particularly those with a communication disability, low-technology solutions are useful and appropriate but often overlooked. (27)
…investment in early intervention not only ensures optimal outcomes but reduces costs associated with support over a lifetime. (33)
2.3.6 POVERTY AND THE COST OF LIVING WITH DISABILITIES (35)
Australian Bureau of Statistics data have long demonstrated that people with disabilities are less likely to be employed, more likely to be dependent on income support and more likely to live below the poverty line. These stark statistics were heartbreakingly illustrated by a large number of submissions that detailed the grim reality of life on the Disability Support Pension.
The costs of mobility aids (like wheelchairs or scooters), communication aids, specifically designed therapies, paid carers and supports, home renovations, etc are all very costly to ordinary people living on pensions or benefits. The extraordinary gap between the level of income support and the cost of disability was seen as restricting the ability of people with disabilities both to live independently and to enjoy a decent standard of living. Gaps in the service system mean that many people with disabilities and their families, friends and carers are forced to meet the cost of essential services and support themselves.
As many noted, this leaves little discretionary income to meet basic living costs. E cannot travel in a normal family sedan. E must travel in her wheelchair to preserve her comfort and safety because it is not possible for her to be safely transferred to or secured into a regular car seat. This requires a van customised to fit E’s wheelchair as the only means to allow her to participate in normal community life … The provision of specialised transport is a significant cost to carers. The cost should attract Government support.(35)
(37)A number of submissions argued that the introduction of a national scheme and the resulting pressure to reduce long-term costs would produce system efficiencies and a greater devotion of resources to early intervention and to those services and supports that maximise independence and potential. It would also allow for a lifetime approach to care and support and facilitate improved long-term planning. In short, it would provide a driver for the kinds of reforms to services that people with disabilities and their families, friends and carers say they would desperately like to see. Details of the proposed schemes varied and a range of models were suggested. They included:
- a universal national compensation scheme for people who have a permanent 'severe and profound' impairment
- a national disability insurance scheme comparable to the Medicare system to fund care and support systems
- a national insurance scheme, with no age barrier, for people who are catastrophically injured
- a national catastrophic insurance scheme to support people with a newly acquired disability
- a national insurance scheme for people with acquired disabilities (through an accident).
2.5 ‘CAN’T GET THERE, CAN’T GET IN, CAN’T GET IT’— NEGOTIATING THE BUILT ENVIRONMENT
2.5.1 LACK OF ACCESS TO THE BUILT ENVIRONMENT AND INFORMATION (42)
The cost of transport or the lack of availability of transport often means that people with disability cannot access education, employment services or the community. It is a pivotal support service which is often not available which then excludes the person from many or all aspects of their community. (44)
3. CONCLUSION — IMPLICATIONS FOR THE DEVELOPMENT OF THE NATIONAL DISABILITY STRATEGY (61)
National People with Disabilities and Carer Council believes that the National Disability Strategy should serve as an overarching policy statement, setting the national view, establishing future directions 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 fi nancing of disability support over time. …the strategy should consider the following key features: (61)
- 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 expected 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 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.