2.3.1 Lack of services and support
T is 40 years old and has been receiving the Disability Support Pension since he was 18 years old. He went to a regular school but felt he never really fitted in.
T has lived all of his life with his mother who is now 80-years-old. T’s mother is suffering from early dementia and this is resulting in friction between T and his mother.
T has been attending a centre for intellectual and development disability. A doctor from the centre reported that a recent WAIS 111 [assessment] showed that T had a full scale of IQ of 72 but his subscales show considerable variation with impaired function in picture arrangement and completion, similarities and coding and relative decrease in his comprehension.
The doctor says T has an inadequate skill base for activities of daily living such as shopping, cooking, tying his shoe laces and self-care, as well as problem-solving and decision-making. He also states he has an anxiety disorder.
T’s situation at home with his mother is very unsatisfactory resulting in T having violent verbal outbursts and he fears for his mother’s safety because he gets so angry he has trouble controlling himself.
The doctor believes that if T does not get support to move from his mother’s home, a more acute situation will arise requiring much more extensive support.
To access disability support services three diagnostic criteria must be met in order to verify a diagnosis of intellectual disability, including IQ assessed as being below 70; limitations in adaptive functioning; and onset before 18-years-old.
he disability support service in T’s area argued that as T went to a regular school, as he has been employed as a cleaner with the support of an employment service, and as he has a driver’s licence and an IQ of over 70, he does not qualify for support under the service’s criteria.
Such eligibility requirements exclude people with IQs higher than 70 who have an impaired function or skill base for daily living (e.g. shopping, cooking, etc.). This population group are overrepresented in the criminal justice system both as victims and offenders.
Disability services are specialist services targeted at people with disabilities, and their families, friends and carers. They can be distinguished from services that are available to the general public, which may or may not be accessible to people with disabilities (also known as ‘mainstream’, ‘generic’ or ‘universal’ services).
Disability services are intended to provide people with disabilities with the assistance they need to participate fully in daily and community life. More than half of the submissions received during the consultation process (56 per cent) said aspects of disability services and programs acted as a barrier to rather than a facilitator of their participation. The disability service system was characterised as irretrievably broken and broke, chronically underfunded and under-resourced, crisis driven, struggling against a vast tide of unmet need. As a result many felt more time was spent rationing services than delivering them.
Services were characterised as unavailable or unaffordable or of such poor quality as to be of little benefit. Many submissions said that there is little or no choice in services provided, particularly in regional or remote areas. Submissions and participants at community consultations said that the system is characterised by a ‘one-size-fits-all’ approach in which there is very little choice or flexibility. Programs and services are built around organisational and system needs rather than the needs of clients. As one submission noted,
The focus of the strategy needs to be on the individual with the disability with the aim of optimising their quality of life, not creating structures and barriers between levels of government, artificial eligibility criteria or categorising people based on a ‘one-size-fits-all’ model.
Another submission argued that the one-size-fits-all approach fails to meet the specific needs of individual clients.
Teens with intellectual disabilities have particular difficulty accessing [sport and recreation] activities because [they sometimes] need a support person … Councils often concern themselves with physical access rather than the other supports needed.
Many people with disabilities and their families, friends and carers described their lives as a constant struggle for resources and support. Some said that they were exhausted and worn out with constant battles, haunted by an ever-present fear that even a limited service would be withdrawn.
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.
Many submissions expressed frustration with the bureaucratic nature of service provision. They describe the system as difficult to navigate, excruciatingly slow and unresponsive. Endless assessments and endless forms seem to lead only to a frustratingly inadequate service. The layers of bureaucracy and red tape not only make locating and accessing support difficult, but appear to bleed the system of much-needed resources. As one exasperated parent commented,
They seem to spend more money on case managers than actual therapists.
People with disabilities and their families, friends and carers expressed frustration that, despite the millions allocated by the Commonwealth and state and territory governments, very little seems to trickle down to those who need it the most.
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.
Services are often so limited that individuals report going to extraordinary lengths to meet eligibility criteria and receive support. This process often leaves them feeling demeaned and humiliated. 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.
The story of ‘T’ above also highlights the consequences of severe rationing in the system. 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.
A number of submissions also noted the lack of portability of funding and the resulting difficulties for people with disabilities and their families, friends and carers attempting to move across jurisdictions. One submission described how the rules affected a family member.
Another problem with state funding is that a person with a disability can’t move from one state to another without experiencing great difficulties. Our son would like to move north but because he is funded by another state this is almost impossible. We approached the authorities and were told that he could apply but would not be considered until he actually lived in the specific state. Even though his funding would be transferred across to his new state, it only lasts one year and then reassessment would occur, leaving us wondering what that would lead to, all in all it is far too difficult and risky for him to move.
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.
We can put men on the moon, we can go to war but we cannot fulfil basic needs enabling our disabled community to live with human dignity.
Proposed solutions
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. Submissions and participants at consultations called for greater availability of individualised funding and services that meet individual needs rather than organisation and system needs. As one submission noted,
Overwhelmingly people with disabilities and families say that they want to directly receive government funding so they can purchase their own services. This will provide people with greater control over supports, give them more flexibility, and would contribute to improved quality of service. Overall, this would allow people with disabilities to have wider choice and live with greater dignity.
Another argued,
As a carer I need our family’s individuality recognised. One way of doing this is through a flexible funding package enabling us to access mainstream community based activity programs around an interest of our son (and specialist programs when needed).
One respondent, the recipient of an individualised support package, commented on its benefits.
For the last 11 years I have been receiving a support and choice package through government funding. Receiving this has enabled me to live independently and continue working. For a number of years I had discussions with the State Government department about managing my own package as I was already doing this informally. In 2008 I was approached by the Department of Human Services to apply to become part of a two year trial of managing my own package. My application was accepted and my involvement in this trial began in February 2009.
Managing my own package has given me the flexibility to alter the assistance l need as my circumstances change. I have also found it to be quite empowering to know I am able to buy services from other agencies when, and if, the need arises. I am extremely conscious of creating a life for myself so that I am not reliant on family and friends. I want to keep them just as that family and friends not as carers.
The respondent strongly supported making individualised funding more broadly available. She noted that it would not only allow people with disabilities more control over the services they purchased but would allow them greater choice in where they lived.
A number of submissions also argued that beyond individualised funding, the creation of an external accreditation system and regular monitoring of service standards would help to improve the quality of services and support.
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2.3.2 Workforce issues
One clear source of frustration for people with disabilities and their families, friends and carers was the often poor quality of staff in the disability services sector. Submissions argued that many staff are poorly trained and resourced, lack understanding or sensitivity to disability issues and, as a result, offer inadequate or poor-quality care. In some cases inadequate care extended to negligence. Frustration was not limited to disability-specific services but extended to people employed in disability positions in mainstream organisations. Disturbingly, more than 22 per cent of submissions reported that difficulties with staffing represents a significant problem in their lives.
Many submissions noted that the combination of low pay, lack of training and poor working conditions makes it difficult for the sector to attract and retain qualified and quality staff. As a result the system is chronically understaffed, placing additional pressure on already stretched staff. Lack of availability of trained staff is a particular problem in regional and remote areas of Australia. One submission highlighted the difficulties with some paid carers.
How do I find an honest, willing carer who will be willing to work for a low wage? You find lazy, dishonest carers everywhere! They take money and cigarettes. One carer I had left leaving me thousands in debt. This man brought his daughter to my home and expected me to feed her. He stole toilet paper, then he just packed up one night and left. They’ve got you over a barrel because you’re at their mercy, and they know it! Finding good carers is very difficult.
A number of submissions also noted that the difficulties in recruiting and retaining qualified staff extends to disability positions in mainstream services. A significant number of submissions argued for improved training in both the health and education sectors in particular to ensure the needs of people with disabilities and their families are appropriately met.
I meet parents who are eternally frustrated and upset by the barriers that their child faces such as their teacher is not trained in how to educate their child who is non verbal or has never worked with a child with a disability.
A consultation participant noted,
A lot of deaf people have specific needs and they need to have the most appropriate deaf professional as well … I don't want hearing people talking with me or talking about my deaf needs with me. I think it's really important that I have deaf counselling services …;We need to train and educate people in that area.
Proposed solutions
Historically, care work has been devalued. As a number of submissions noted, any reform to the sector must therefore begin with recognition of its importance. It must begin with recognition that these services and supports are essential to a basic standard of living and meaningful participation in community life for people with disabilities and their families, friends and carers. Greater attention to workforce development is essential if the needs of people with disabilities and their families, friends and carers are to be met. Any reforms to the area must focus on the creation and retention of a skilled workforce that is able to provide high-quality support.
While a range of strategies were proposed, most submissions agreed that any reforms must incorporate the following features:
- increased pay rates
- improved conditions
- improved education and training
- development of clear education and career pathways.
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2.3.3 Lack of aids, equipment and assistive technologies
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.
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. 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.
People with disabilities and their families, friends and carers reported difficulties with eligibility for aids and equipment as well as long waiting times for assistance.
A child we will call S is 8-years-old and lives in a small rural community with her mother and siblings. S has cerebral palsy and uses a wheelchair permanently. She is unable to use verbal communication and uses a speech activated computer and has a manual wheelchair and attends public school.
Her mother has applied for and been waiting several years for an electric wheelchair for S, which would enable her to be more active at school with her friends and be more independent than she is. This would also free up her mother from having to push S everywhere as she is unable to use a manual wheelchair herself. S has a highly active mind and is very intelligent and without the use of an electric wheelchair and an up-to-date communications system she will flounder and the opportunity for a bright child to advance will be lost.
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.
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.
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?
Proposed solutions
There are currently multiple aids and equipment schemes operating across the country. Many submissions argued that a nationally coordinated and funded equipment scheme would eliminate existing inequities and ensure portability across jurisdictions. Some suggested that equipment could be made available through Medicare. Others suggested improving tax concessions and rebates for those purchasing their own equipment. And some suggested broadening the existing communications allowance into a utilities allowance.
Submissions also argued that each sector should have appropriate resources to ensure staff have up-to-date knowledge of assistive technologies and the means to investigate developments in the interface between mainstream and assistive technologies. Others focused on ways to facilitate further research and development. A small number noted, however, that 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.
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2.3.4 Lack of housing options
Many people with intellectual disability live in group homes, and while some would argue that this is an improvement on the previous large institutional arrangements, these environments still congregate and segregate people in a way which inhibits community inclusion. Further, people living in these arrangements have very little choice about who they live with, whereas non-disabled community members who choose to share accommodation with others generally do have this choice …
It is reasonable to argue that very few people living in group homes would choose to live in such a setting if they had a realistic choice. It is a compromise brought about by necessity, as they do not have enough support through funding for paid support, even augmented by their family and informal support networks, to live in their own home… The concept of community living for people with intellectual disability is a much richer concept than a mere physical presence in a community setting, which by itself does not guarantee community integration and inclusion. As support workers often work alone, there remains significant risk of abuse and neglect.
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A woman with a physical disability was forced to move into a group home with two men with autism when her family was no longer able to support her. The woman feared for her safety as she had no way of defending herself when she was hit by one of the men …
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A mother complained that her son was being repeatedly sexually assaulted by a resident of his group home. The service was not able to move the other man to alternate accommodation because none existed.
Few things are more fundamental than having somewhere to live. Having little or no choice in where one lives has a profound impact on physical and mental health, and the ability to participate in employment and community activities. Yet this is precisely the experience of many people with disabilities. More than 32 per cent of submissions identified difficulties with housing and accommodation. Concern included a lack of support for people in private dwellings (owned or rented) as well as those in a range of publicly funded models of accommodation such as group homes, cluster housing or large residential centres (congregate institutions).
Few Australians without a disability can imagine what it would be like to have no say in where they live or who they live with. The freedom to choose where and with whom one lives is a fundamental freedom, but it is one few people with disabilities are able to exercise. Many people with disabilities want to live independently in the community but are unable to access the support they need to do so. Many parents also reported profound frustration that despite their desire to see their adult son or daughter move out of the family home, there was simply nowhere for their child to go.
Some estimates suggest that only a very small percentage of people with a severe or profound disability receive any form of government-funded accommodation support. The shortage of accommodation has meant that even those on emergency waiting lists can wait years for assistance. Lack of alternatives also means that those who are currently in unsuitable arrangements have very little chance of moving. For some this results in a severely compromised quality of life. For a small number it leads to continued victimisation and abuse.
Submissions were both passionate and desperate in their calls for increased funding of accommodation options.
Our daughter is 18. She has a severe intellectual disability and is fully dependent on us for all her needs. [She] displays challenging behaviours, which makes daily activities within the family very demanding. [She] presently attends school and accesses respite two nights per week during school weeks. This arrangement will cease at the end of 2008 as [she] will be leaving the educational system. We understand there will be no supported accommodation made available to us in the future. Our greatest concern for the future is that due to our daughter’s high support needs we will be unable to continue in our present work situation.
It would appear that the government thinks that once disabled children turn 18, they all of a sudden find independence and need less support. Well, let me tell you they are still the same people they were when they were children, they need care 24/7, they won’t get a job and they cannot look after themselves until Mum and Dad get home from work. This will not change for the rest of their lives, this is reality. We care for our children and want to continue to do so, but cannot do it without support from the government. Do we have to hit crisis point before you will listen?
The desperation of ageing parents haunted by the thought of what will happen to their children when they are no longer able to provide a high level of care and support was a sad recurring theme in submissions. The crisis in accommodation means that few are able to plan effectively, and transitions out of the family home are therefore often traumatic rather than seamless.
I didn't want to be a carer in my older age. I originally was a teacher. I found it very hard. No-one told me anything about how to get help and I was looking after her [my daughter] 24-hours-a-day by myself for quite a while. I took her to the hospital (for rehabilitation). By February the doctor called me up, only wanting to tell me this wasn't the place for her. And then I said, ‘Well, I'm leaving her here until I either get rehabilitation or help.’ I tearfully went home and my daughter was very upset and when I got home the social worker rang me and said, ‘You can't leave your daughter here.’ I said, ‘Well, I am until you get one or the other or both.’ She said, ‘We will send her to a nursing home.’ I said, ‘You can't because I am her guardian.’ She said, ‘We will get the government to take the guardianship off you.’ So that's how I was treated as a carer.
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Some of the carers are in their late 80s or 90s and have terminal illness. Many or almost all of the carers do not have other family members to care for their son or daughter which means they need to be placed in supported accommodation … [P]lacements are governed by the Department who operate a panel for eligibility. This is decided on a priority basis. This process usually means persons have little choice in accommodation [when] their parents are critically ill or have [died]. All of the carers would like to be part of the process of transitioning their son or daughter in care. I have witnessed intense worry for the carers and the care recipient waiting for an appropriate placement. Many will not live to see this. I see this as a priority as there is currently no choice for a person with a disability and entry into supported accommodation is largely crisis driven, causing carers and care recipients undue suffering.
When accommodation cannot be found sometimes extended family members are pressed into service.
A middle-aged man was concerned about his elderly sick mother who was looking after his three siblings who have an intellectual disability. The man had pledged that when his mother died, two of the siblings would come to live with his family but it would be difficult to support his older brother whose needs were more significant and complex. The man tried to organise for his brother to move into government funded accommodation but was told he could not do so because the mother had not tried all forms of respite care as a way of keeping her son at home.
Another commented,
Governments rely on most parents never being able to bring themselves to abandon their children. Deep parental love and a sense of duty are being deliberately exploited solely in order to save money, which in a country as wealthy as Australia, is profoundly shocking. But even the most devoted and self sacrificing of parents can’t keep on caring if they’re dead.
Sadly a number of submissions noted that sometimes the only way to access out-of-home accommodation is abandonment to state care.
Respondents expressed frustration not only with the lack of funding for accommodation but also the lack of appropriate or suitable models. Alternatives to group homes are few and far between and for some lead to a restricted lifestyle and poor quality of life with limited opportunities for independence.
One family expressed frustration at the treatment of their 31-year-old son who lived in a community residential unit. Despite his age, the young man was forced to go to bed at 8.30pm and was punished if he got up ‘too early’. He was forced to travel in a van with a cage even though he was a regular passenger in the cars of family and friends. For this family, this did not appear to be ‘independent living’. For young people who require a high level of support and care, there appear to be few alternatives to life in a nursing home. Despite recent commitments to the development of alternative models, too few people are able to access age-appropriate care that meets their individual needs.
And as a small number of submissions noted, it is also important to remember that despite more than 20 years of deinstitutionalisation, a significant number of people with an intellectual disability still find themselves ‘warehoused’ in large congregate institutions. As these submissions noted, many people are unaware of the experiences of this vulnerable group.
Proposed solutions
Most submissions that addressed housing and accommodation highlighted one main issue—lack of choice. Proposed solutions focused on the development and resourcing of alternative models. An injection of funds to increase the availability of accommodation options to relieve the crisis in unmet need is clearly required. But beyond increased funding, most submissions in this area called for more creative thinking and the development of models that are more responsive to individual need and lifestyle. Many hoped the greater availability of individual support packages would allow some to purchase services to enable them to live a more independent life in their own home.
Proposals included:
- developing lower cost, higher empowerment supported accommodation models for people with an intellectual disability
- introducing accommodation and support services run by and for Aboriginal and Torres Strait Islander people with disabilities
- developing outcome-based key performance indicators and enforceable standards for all forms of accommodation as part of an accreditation process
- increasing the availability of public housing stock for people with disabilities.
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2.3.5 The importance of health and wellbeing
Born with motor neurone disease, D’s mother did everything for her for her whole life. Although she was capable, she had never even washed her own hair until after her mother died when she was 32.
After the initial shock, and being nearly forced to live in a nursing home, five years later D was living independently on her own. She had started a social group for young people in nursing homes.
We were about to have a housewarming party to celebrate this massive achievement of living on her own when D became ill. No one thought that she should have yearly health checks and she developed kidney stones. With her disability she couldn’t feel anything from her stomach down and so didn’t get the warning signs that people who can feel do.
One night on her own she rang the after hours care to tell them she needed help and would they send someone to help take her to hospital. The After Hours Disability Service determined over the phone that she was not sick enough to warrant a visit. D then had to ring the ambulance herself, on her own she went to hospital distressed.
She was sent to intensive care and put into a medically induced coma. Five months later she passed away. She never went back to her home to live.
She was let down on so many levels.
People with disabilities require the same access to health care as all other Australians, yet experience considerable difficulties receiving appropriate care. More than 29 per cent of submissions identified problems with health care. At consultations across the country many people passionately argued that the gaps are so considerable and care so compromised that people with disabilities experience not only a poor quality of life, but also threats to their very lives. These participants strongly argued that poor health care is contributing to a reduced life expectancy for people with disabilities.
Submissions argued that many in the health and allied health sector receive very little training regarding disability and therefore have little understanding of the health needs of people with disabilities. More disturbingly, some argued that myths and misconceptions regarding disability are affecting clinical decisions and compromising quality of care.
There’s a lot of ‘she’s in a wheelchair, take an aspirin and go home’.
Health professionals who were considered poorly trained to work with people with disabilities included doctors, nurses, specialists, pharmacists, community health care workers, and allied health professionals such as audiologists.
They need clear signage, awareness and education for people in the hospital system for deaf people, especially when you are sick and unable to convey your needs.
Submissions argued that despite their training, health professionals hold the same beliefs and misconceptions about disability as the rest of the community. Ironically, because of their training they are often less likely to acknowledge this. As one respondent noted,
Those GPs who have myths about disability and sexuality may refuse to give women with a disability a pap smear.
One submission noted that there appears to be little awareness of the mental health needs of people with intellectual disabilities, particularly as they age. This was seen as a pressing issue for future planning.
A number of submissions also noted the lack of availability of early intervention, particularly for children with disabilities. These submissions argued that while early intervention is essential to ensuring children with disabilities grow up to reach their full potential, most children receive only a few hours of support a week. With such limited availability, the burden falls on parents to source and pay for other kinds of support or carry out the work themselves. While parents clearly expected to be active participants in meeting the additional needs of their children, there was considerable stress, resentment and anger at the perceived transfer of responsibility of early intervention to parents. And as these submissions noted, investment in early intervention not only ensures optimal outcomes but reduces costs associated with support over a lifetime.
Ideally, early intervention should be a one-stop-shop for parents and carers seeking support in the early years of a child’s life, this period typically being one of the most stressful in the journey of a family with a disabled member.
Proposed solutions
Most proposed solutions focused on the need for greater funding of health care for people with disabilities to ensure all their health needs are met, including expansion of the health care card system to improve access and affordability and increased subsidies for essential medications. Most submissions also advocated for improved training of health and allied health professionals.
Submissions also called for greater funding of early intervention for children with disabilities, and more extensive research into effective methods and practices.
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2.3.6 Poverty and the cost of living with disabilities
R is 51. He is blind, and also has a severe hearing impairment that is becoming more severe with time. R is entitled to receive free hearing aids through Australian Hearing Services. However, because of the lengthy waiting list for appointments, it can take months for him to have adjustments made as his hearing deteriorates. Because he wants to live independently and be as active as possible, including maintaining employment, R has decided he has no option but to use the services of a private audiologist and purchase hearing aids in the marketplace. This amounts to around $9,000 every four to five years.
R is a parent, and has primary care of his teenage daughter. He needs to live close to his daughter's school, but this means that he cannot use public transport to go to work each day. So he spends about $400 per week in taxi fares, even after the use of a transport subsidy voucher book that pays $30 per trip. As a recipient of the Disability Support Pension (Blind), R receives a Mobility Allowance to help cover transport costs. However, the Mobility Allowance is only $37 per week—less than the cost of one of his daily taxi trips.
R also has to spend money on computer equipment and adaptive technology for his private use, as well as on home maintenance and the usual household expenses. There is little left over for non-discretionary expenses such as leisure and entertainment, and R is not in a position to save for the future. If R chose not to work, he would probably not be significantly worse off financially, and he would be more likely to be able to use his entitlement of free hearing aids through Australian Hearing Services. If he could claim his work-related transport expenses as tax deductions, and if there were a scheme for subsidising the purchase of assistive technology for private use, R's financial position would be similar to that of a person without a disability who worked in a similar job.
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. Resented by some in the community for their reliance on the pension, yet unable to access the support required to move off it, many people with disabilities find themselves trapped in a poverty cycle of high cost and low income. More than 37 per cent of submissions highlighted the difficulties involved in juggling the high cost of living with disabilities and the low level of income support available. As one submission noted,
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.
Disability support recipients live lives of fear and desperation. Sooner or later every disability support recipient I know has confessed to the concern they feel over the ‘what if’ factor—what if government stops paying social security/disability support?
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.
As a result, families caring for a member with a disability also find themselves caught in the poverty trap. Many said they were forced to fund private services that were unavailable elsewhere, which put a significant dent in the family budget.
Many submissions also noted the inflexibility of the application process and eligibility criteria of the Disability Support Pension, which acts as a disincentive to full employment. These submissions reported that the transition from the Disability Support Pension to paid employment often incurs significant financial costs, including transport and increased fees for support services. Such costs often lead to decreased income, and therefore act as a disincentive to seeking employment. These submissions argued that the rules and policies around the payment of the pension require review.
Proposed solutions
Most respondents welcomed the Harmer Pension Review and the Henry Review of Taxation (Inquiry into Australia’s Future Tax System). Many suggested that the review of the Disability Support Pension should be extended to include other allowances, including the Carer Payment and Carer Allowance. Some suggested that any proposed increase to the pension and allowance system should be based on modelling of the true costs of disability and caring (including indirect costs such as foregone earnings, superannuation contributions and interest). One submission, for example, suggested that the Disability Support Pension could be tiered to reflect costs associated with disability. Others argued that the Disability Support Pension should be scrapped entirely in favour of a modular Disability Allowance. This allowance would be tax-exempt, not means-tested, and based on an assessment of the nature and costs associated with an individual's disability.
Existing allowances were well supported, with suggested changes to current age limits. An enhanced Communications Allowance to cover the additional costs of using information and communications technology products and services (such as mobile phones and broadband) was also proposed, as well as a disability study allowance or ‘Dis-study’, similar to the current Abstudy allowance for Aboriginal and Torres Strait Islander people. The creation of a low-interest loan scheme for disability-related costs was also suggested.
A number of submissions suggested that the high costs associated with disability could also be addressed by changes to the tax system. These submissions argued that people with disabilities should be entitled to rebates or deductions for associated costs.
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2.3.7 The need for a lifetime care and support scheme
The chronic underfunding that has characterised the disability service sector for decades has had many consequences. The extraordinary level of unmet need has forced many people with disabilities and their families to purchase services and support privately, contributing to the high cost of living with a disability and trapping many people and their families in a desperate cycle of poverty. It has also resulted in a demand-management approach to service delivery, with greater attention paid to rationing services than meeting individual need. Resource constraints also contribute to a one-size-fits-all approach. Most importantly, the system clearly fails to ensure people with disabilities have the support they require to live as independent a life as possible, and enjoy a quality of life others in the community take for granted. Many submissions argued that the service system is so fundamentally flawed as to be beyond bandaid solutions, requiring a complete overhaul to deliver lasting change. And many saw the creation of a lifetime care and support scheme (sometimes known as a national disability insurance scheme) as the paradigm change required.
Despite recent commitments to an increase in resources, submissions argued that the system is clearly unable to meet current need and has limited capacity to meet anticipated increases in demand. They 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 is to create a model of funding in which resources are available irrespective of changes to the economic climate, government budgetary cycles 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. As one submission noted,
National compulsory superannuation and health insurance (Medicare) are already accepted as key pillars of Australian public policy. Many of the principles underlying government decision making on superannuation and health insurance also apply to the disability area.
While another argued,
A commitment from all governments to the provision of essential services for people no matter how they acquired their disability is essential. It is only with this basic commitment … that we can make any substantial progress.
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).