Chapter 16 - People with a disability

Chapter 16 - People with a disability

The plight of people with disabilities and poverty is such that, along with some of the other socioeconomic groups of Australia, it has almost become accepted that we will be poor.[1]

16.1    People with disabilities and their carers are vulnerable to poverty and disadvantage and it has been observed that poverty is 'disability's close companion'.[2] This chapter examines the relationship between disability and poverty and reviews the adequacy of current programs and supports available to people with disabilities and their carers in addressing poverty. Specifically the chapter looks at:

Poverty and disability

16.2    Poverty is particularly prevalent amongst people who have a disability due to a combination of factors including low incomes, fewer employment opportunities and additional costs due to their disability. Submissions noted that people with disabilities have lower workforce participation rates and are more likely to be unemployed than many other groups in the population. In addition to being excluded from earning an adequate income, people with disabilities often have higher costs of living associated with their disability. This may include the high cost of medication, the purchase of special equipment or aids, and access to appropriate housing, transport and services related to personal care or maintenance of a person's home. The combination of higher costs of living, along with low income, leads to a strong connection between disability and poverty.[3]

16.3    One study estimated that 26.7 per cent of households headed by 'sick' or 'invalid' persons were in poverty before housing costs in 1996 – this declines to 6.2 per cent after housing costs.[4] Additionally, it needs to be noted that many people with a disability are dependent on family members for care and support, which in turn impacts on the ability of these carers to participate in the labour market with many carers being forced to either leave the job market or reduce their hours of work.

16.4    Disability advocacy groups highlighted the plight of people with disabilities and the poverty and deprivation that many experience. SANE Australia stated that 72 per cent of people with a psychiatric disability are unemployed and over 85 per cent are dependent on the Disability Support Pension (DSP) as virtually their only source of income. The poor physical health endured by these people can also be associated with poverty-related issues such as poor diet, poor housing and social isolation.[5]

16.5    Groups noted that people with physical disabilities whose only source of income is the pension are also struggling to meet their everyday costs because they do not receive assistance to meet their disability-related expenses. Blind Citizens Australia, for example, noted that blindness and poverty are closely related. People who are blind have restricted access to community infrastructure and resources; are disproportionately affected by unemployment; and have high levels of blindness-related expenses.[6]

16.6    The Committee heard directly of the personal experiences of people with disabilities and their carers during its hearings. These personal stories highlighted the financial hardship many of these people face on a day-to-day, year in, year out basis and provided a valuable insight into the problems faced by these people, their families and their carers. Some of these life experiences are provided below.

Poverty and disability – life on the margins of society

Mr Miller – What I...cannot do is live on $400 a fortnight. Actually, I am wrong–I can exist. But I cannot live. I think I am not the only person with a disability in my circumstances who finds this. the key to disability. We have none. We did not choose the disability, it chose us, and now it gives us no choice. My disability cost me $1 million in income lost, past and future earnings, but that is a lesser cost than some have paid, so I have to say that, by comparison, the little things I talk about really boil down to staying alive on $400 a fortnight.

Committee Hansard 28.7.03, pp.1019-20.

Ms Allan – I was born in the a time where there were little or no expectations of people with disabilities. The community mindset was that people with disabilities would always be taken care of by the government, by way of invalid pensions, accommodation, et cetera.

Most people who have long-term disabilities over the age of 30 have no means to a long-term financial plan. In fact, we never thought we needed one. My primary income has always been a disability support pension. Almost six years ago I escaped long-term domestic violence with three small children in tow, a disability pension, family payments and no maintenance payments. I have been to the bottom. I can share stories not only of disability, but of prejudices that come with being a woman as well. I have been to the bottom; as low as I never imagined; as low as having to eat Weetbix regularly for my dinner, so that I could stretch the budget.

I have been housed, with my children, in a women's refuge that did not have disability access and still I did not give in, as many would have. I am in a very different place now but only through sheer hard work – hard work, fear and a determination never to eat Weetbix for dinner again. I am lucky to have had the strength to get this far, as many do not and not just because they have disabilities.

I believe that having been born with a disability has meant that justifying my self-worth has been something I have done naturally forever, so I have become very good at it. Yet the financial struggle and the worries and the fears go on.

Committee Hansard 28.7.03, pp.1015-16.

Mr Sheedy – For myself, I have had an intellectual disability from birth. In later years in life I have multiple health issues, the top one diabetes. The current cost of servicing my medication is $418 a year. That is with the prescription subsidy scheme. My concern is what is going to happen in future if governments of the day bring in things like the recent Senate Medicare inquiry, where it is copayments to see your local GP?

For my spouse, who has an intellectual disability, my concern is for the future. She is unable to articulate like me. She has had a very poor education. She cannot manage a lot of her own banking issues or handle money. If I happen to leave she is going to have to rely on the public health and public welfare system.

Committee Hansard 28.7.03, pp.1021-22.

Support and assistance for people with disabilities

16.7    The Commonwealth Government provides the main source of income support to people with a disability and their carers. The main Commonwealth disability-related payments and allowances include:

16.8    Other services provided for people with a disability include:

16.9    The Commonwealth has also implemented a Commonwealth Disability Strategy. Under this strategy, Commonwealth departments and agencies are obligated to ensure that people with disabilities have the same access to buildings, services, information, employment, education, sport and recreational activities as other Australians. The strategy encourages Commonwealth agencies to prepare action plans and provides a performance framework for reporting on progress in relation to these plans.

Funding for disability services

16.10         Governments fund both government and non-government service providers of services for people with disabilities under the Commonwealth State/Territory Disability Agreement (CSTDA) and HACC programs, and through the provision of rehabilitation services. The CSTDA funds specialist disability services to meet the needs of people with a disability. As noted above, under the CSTDA the Commonwealth administers employment services and the States administer accommodation, community access, respite care and community support services. Advocacy, information and print disability services and research are shared by the Commonwealth and the States.

16.11         Under the new CSTDA, which was signed in 2003 and will operate until June 2007, the Commonwealth's total funding commitment is $4.8 billion, which comprises $2.8 billion to the States for their responsibilities under the CSTDA and $2 billion for employment services and shared responsibilities. The Agreement includes a series of bilateral agreements between the Commonwealth and the States. All the States have signed up to the new Agreement except NSW.[9]

16.12         Expenditure by the Commonwealth and the States under the former Commonwealth-State Disability Agreement (CSDA) has shown a steady rise in funding in real terms over recent years.  Total expenditure on services has risen from $2.2 billion in 1998-99, to $2.4 billion in 1999-2000 and to $2.5 billion in 2000-01. This equates to percentage increases in total real expenditure on services by the Commonwealth and the States of 6.8 per cent in 1999-2000 (over the previous year) and 5.3 per cent in 2000-01. Total government expenditure on CSDA services was $2.7 billion in 2001-02 – a real increase of 7.9 per cent from the level of expenditure in 2000-01. State and Territory Governments spent $2.4 billion on CSDA services in 2002-03.[10]

Level of unmet need

16.13         Despite these expenditures there is a significant problem of unmet need with respect to the provision of support and assistance for people with disabilities. An Australian Institute of Health and Welfare (AIHW) study of access to disability services found the following estimates of unmet need in 2001:

The AIHW noted that these estimates are conservative. In addition, the estimates do not represent the total sum of unmet need for CSDA services as community support services were not included in the study.

16.14         The AIHW study pointed to other data that suggest that the overall service system for people with disabilities is under pressure. The study found that:

Factors relating to poverty and disadvantage

16.15         A number of factors relating to poverty and disadvantage for people with disabilities were highlighted during the inquiry. These related to income support and related payments, employment, education, housing, transport and access to information. While these issues have been discussed separately in this report as key indicators of poverty, they are especially profound for people with a disability.

Income support and related payments

16.16         Disability advocacy groups argued that the current system of income support is inadequate and, in particular, does not cover the real cost of disability. The Physical Disability Council of Australia noted that 'the present disability support pension is a base does not take into account the specific needs that a person has with their disability'.[13] People with Disability Australia commented similarly:

For people with disability on the Disability Support Pension there are little funds available for anything more than the very basic necessities of life. This severely restricts the ability of some people with disability to experience many things in life and to access opportunities such as employment and education that may support them to move away from their life of relative poverty.[14]

16.17         Blind Citizens Australia also stated that:

...people who are blind whose only source of income is the pension are struggling to meet their everyday costs because they do not receive assistance to meet their essential disability related expenses. As a consequence, people who are reliant on the pension are spending substantial proportions of their and their family's income on blindness related expenses.[15]

16.18         Evidence to the inquiry highlighted several of the shortcomings of the current system of income support and related payments and services:

16.19    Table 16.1 illustrates some of the gaps in the provision of services and supports faced by people with disabilities.

16.20    A number of options were suggested during the inquiry to address the problem of the additional costs of disability with most advocacy groups proposing the introduction of a costs of disability supplement.

Table 16.1                                                       Gaps in the Provision of Supports to Offset the Cost of Disability

Additional Cost

Form of Assistance


Loss of income

Disability Support Pension (C’wealth)

No recognition of additional costs of disability relative to age; no recognition of variation in costs.


Rental assistance (C’wealth), accommodation supports (State)

No recognition of higher cost of accessible homes.

Personal and Home Care

Attendant care (C’wealth), Home care (State)

Limited range of tasks funded; inadequate funding means many people without support.

Home and Furniture modifications

Technical Aid for Disabled (Non-government); Home Modifications and Maintenance (State)

Inadequate funding means many people without support.


Capped 50% Taxi Transport Subsidy (State)

Cost still high relative to public transport cost.

Wheelchairs, scooter

PADP (State), 20% Income tax rebate (C’wealth)

Limited by PADP criteria and shortages; discourages workforce participation.

Home maintenance, cleaning, garden

HACC (State)

Limited range of tasks funded; funding inadequate.

Therapies and Exercise

Provided through services and schools (State)

Inadequate funding; mainly limited to children.

Transport, excluding taxis

Mobility Allowance (C’wealth)

Mobility Allowance does not recognise wide variations in costs; Inadequate IPTAAS funding.

Continence aids, associated products

$450 limit (C’wealth)

CAAS does not recognise wide variation in costs.

Pharmaceuticals and health care

Pharmaceutical benefits scheme (C’wealth)



Respite and Recreation (State)

Inadequate funding.

Medical and hospital

Medicare system, private health insurance

Satisfactory; disadvantaged by ‘averaging’ methods.

Food, Diet, Hygiene

Meals on Wheels (State)

No funding for special diets.

Wheelchair/Equipment Maintenance

PADP (State), 20% Income tax rebate (C’wealth)

Limited by criteria and funding shortfalls; discourages workforce participation.

Aids and Equipment

PADP (State), 20% Income tax rebate (C’wealth)


Telephone allowance (C’wealth); PADP (State)

Clothing and footwear

No program

No funding.

Power and Temperature Control

Discounts to Card holders (non-government)

Income earners with disabilities ineligible.

Source: Submission 188, p.26 (Physical Disability Council of Australia).

16.21    The Physical Disability Council proposed replacing the current income support arrangements with:

16.22    The Council explained the specifics of their proposal in the following terms:

...someone who is working and someone who is not working could be entitled to a disability support allowance that would meet some of these costs and go some way toward relieving the level of poverty that people live in...The employment designed for those who are intending to go to work. It was designed to be a payment to people who are looking for employment or undertaking training in order to work – any of those options – to assist in that particular undertaking...On top of that, you should have allowances that are dependent on people's circumstances...It would depend on your circumstances as to which allowances you were entitled to and that would be assessed.[18]

16.23    ACOSS also proposed the introduction of a Costs of Disability Supplement. This payment would be a non-taxable cash entitlement to assist with the extra essential costs associated with disabilities and would be paid as a supplement to the DSP. The supplement would cover the following costs:

16.24    ACOSS argued that each component of the supplement could have more than one rate of payment to respond to the variations in the average costs faced by different groups of recipients, and the supplement should either be paid without an income test, or an income test that only excludes the top 20 per cent of income earners.[19] One submission noted the supplement could also include components that support independent living and personal care; provide for technical aids and appliances; access to information and communication; and extraordinary health care and therapy.[20]

Recommendation 81

16.25    That the Commonwealth introduce a disability allowance to meet the additional costs associated with disability.


16.26    People with a disability face a range of obstacles to employment, including attitudinal barriers, such as discrimination in the job application process and discrimination at work. In addition, there are additional costs of participating in the workforce, such as transport costs and necessary workplace modifications. People with disabilities are also particularly vulnerable to economic downturns and are more likely to be retrenched at these times.

16.27    People with disabilities remain marginal to mainstream employment opportunities. The level of labour force participation is significantly lower for people with a disability (53.2 per cent in 1998) than for people with no disability (80.1 per cent). The participation rate for a person with a severe or profound restriction was even lower – 18.9 per cent and 40.2 per cent respectively. The unemployment rate among people with a disability was 11.2 per cent in 1998 – well above that for people with no reported disability (7.9 per cent).[21]

16.28    The Commonwealth through the Department of Family and Community Services (FaCS) funds a number of disability employment assistance services. These include:

16.29    A number of programs assist jobseekers with disabilities to find or maintain employment. These include:

16.30    As noted above, people with disabilities face a variety of obstacles in obtaining employment. There are barriers in accessing information regarding jobs and in the job application process itself for many people with disabilities. In the case of blind people it was pointed out that the increasing placement of job vacancies on the Internet has created difficulties for the visually impaired – 'you must have the equipment compatible with you to be able to find a job'.[23] Such equipment is costly. In the case of deaf people, interpreters are not always provided for job interviews, nor in other situations such as employment-related training and orientation.[24] Disability Action reported that many people with disabilities have to make a difficult decision about disclosure of their disability – 'the choice is between disclosing their disability and getting adequate support at times when they need it and not disclosing it and having a better chance of getting a job'. Disability Action stated that many of those who do disclose their disability at an interview simply are not selected for the job.[25]

16.31    Submissions argued that the problem of the disability-related costs of employment needs to be addressed. The Commonwealth currently meets some of the additional costs of employment for people with disabilities, for example, through the Mobility Allowance and the Workplace Modifications Scheme. However, this assistance does not meet the full disability-related costs of employment.

16.32    Blind Citizens Australia noted several limitations with the Workplace Modifications Scheme. The scheme does not cover the on-going cost of up-grading or repairing adaptive equipment. It also cannot be used to meet the cost of a myriad of small adaptive items that the blind use to access information in the workplace such as talking calculators. In these circumstances, the additional costs are usually met by the blind employee and the cumulative effect of these costs can be substantial. For example, talking calculators can cost from $23 and up to $875 for a scientific calculator, with pocket tape recorders costing between $250 and $450.[26]

16.33    The Committee notes these concerns, and has recommended that a disability allowance be introduced to take into account, among other things, the employment-related costs of disability.

16.34    Submissions argued that a number of measures need to be introduced to encourage greater employment opportunities for people with disabilities. These include:

16.35    As noted above, a number of programs exist to assist people with a disability to find or maintain employment; however, the Committee believes that further action by governments is required in this area. The Committee notes that the Commonwealth Disability Strategy also aims to ensure that people with disabilities have the same access to employment and other opportunities as other Australians, although this initiative only applies to Commonwealth departments and agencies.

Recommendation 82

16.36    That the Commonwealth re-commit to employ people with disabilities in the public sector in proportions that reflect their representation in the wider community.

Recommendation 83

16.37    That the Commonwealth Government and the States continue to implement strategies to promote greater employment of people with disabilities in the private sector.

Business services whose workforce is people with a disability

16.38    Some submissions also raised concerns about the low pay, poor working conditions and lack of monitoring of Business Services or sheltered workshops. Business services are commercial businesses whose main workforce is people with disabilities. These businesses provide supported employment for approximately 17000 people with moderate to severe disabilities. The sector generates some $250 million in sales annually.[30]

16.39    Disability Action noted that low pay is often a feature of sheltered workshops – with workers earning between 50 cents and $4 per hour – 'not only do they work hard and get very little pay; they also get abused and are not treated very well in some workplaces'.[31] Disability Action also stated that many workers were reluctant to complain about pay and conditions – 'hence there is a great opportunity for management and those who are there to provide support (called staff) to exploit the workers with disabilities (called employees)'.[32] Disability Action also argued that with the introduction of the Disability Services Standards and the Disability Discrimination Act 1992 an independent monitoring body should be established to monitor the conditions in sheltered workshops. Disability Action stated that 'we have standards anyway – disability employment services standards – but it is not good enough just to leave the control of the monitoring of these standards up to the organisations themselves or the workers'.[33]

16.40    The Commonwealth is moving towards a system requiring Business Services to pay competency and productivity assessed, award based wages for people with disabilities working in Business Services.[34] Often commercial pressures facing Business Services have meant that employment conditions and payment of wages to employees with disabilities have taken a lesser priority to the provision of support and business viability. People with Disability Australia argued that the introduction of award based wages for people with disabilities accessing Business Services goes some way to addressing the past problem of people with disabilities 'effectively selling their labour for minimal wages' in supported employment.[35]

16.41    Supported employment services cautioned, however, that the financial viability of many services may be put at risk with the movement towards competency-based wages. McCallum Disability Services noted that at present their Service is in large part activities-based and less concerned with outputs in a business sense. With competency based wages – 'it will mean that they will get paid more, which will affect their pension, and secondly, it will mean that those people who do not have the ability to produce at least about 30 per cent of normal output will not be able to have a place in those supported employment programs. We do not see that as a progressive move'.[36] Greenacres Association, which employs over 170 people with mainly developmental disabilities, also noted that supported employment services will be less able to offer work to medium and high support employees if compelled to pay higher wages, and coupled with increasing competition from low-wages countries in Asia in the goods that they produce – 'we will certainly lose the work for our employees and along with that they will certainly lose their jobs'.[37]

16.42    The Committee believes that employees in Business Services need to have appropriate pay and working conditions but that a balance needs to be struck between providing these conditions and maintaining the viability of the various enterprises concerned. The Committee believes that the Government should continue in efforts to improve the viability of Business Services so that better wages and working conditions can be provided for people with disabilities working in these enterprises.


16.43    Access to educational opportunities for people with disabilities was a concern raised during the inquiry.

16.44    Trends in educational participation suggest that there are increasing rates of school attendance by people with disabilities, especially in ordinary school classes, and this trend is evident irrespective of disability status, including for people with severe restrictions. Based on self-reported school attendance data from ABS disability surveys, overall, there was a higher proportion of people aged 5-20 years in school and reporting a disability in 1998 than in 1981; rising from 5.7 per cent in 1981 to 9.2 er cent in 1998. For people with a severe restriction in this age group, the rise was 1.2 to 3.7 per cent.[38]

16.45    People of working age (15-64 years) with a disability, and particularly those with a severe or profound restriction, participate less in the education system than people with no disability. The 1998 disability survey found that 38.8 per cent of people with a severe or profound restriction had post-school qualifications, compared with 46.8 per cent of people with no disability. Only about one in five people with a severe or profound restriction completed Year 12, in contrast to 43.9 per cent of people with no disability.[39]

16.46    The proportion of students in the vocational education and training (VET) sector reporting a disability increased from 2.9 per cent in 1995 to 3.6 per cent in 2000, while the proportion of students reporting a disability enrolled in universities also increased – from 1.9 per cent in 1996 to 3 per cent in 2000.[40]

16.47    The Commonwealth provides payments to assist with the costs of education for people with disabilities. The Pensioner Education Supplement assists with the cost of full-time or part-time study for people receiving the DSP. People who receive the education supplement may also be eligible for the Education Entry Payment, which is an additional annual payment to help with the cost of study.[41] Disability Action stated that these payments assist many people with disabilities to access further education and should be maintained.[42]

16.48    Evidence indicated the need to improve access to educational opportunities for people with disabilities, especially in the following areas:

16.49    Disability advocacy groups argued that:

16.50    Several of these themes were highlighted in a recent Senate report into the education of students with disabilities. The report found that children and their parents are not being given the support that they need in the education system in terms of access and quality of educational opportunities. The report also questioned whether Commonwealth funding was being effectively targeted at deficiencies in the provision of education programs for students with disabilities. The report pointed to under-resourcing of educational programs for students with disabilities in the school sector and in post-secondary education.[46]

16.51    It was emphasised during the inquiry that access to educational opportunities for people with disabilities is important in addressing their long-term life chances. The Deaf Society of NSW stated that 'lack of educational opportunities has a major impact on deaf people's ability to take advantage of the opportunities in employment and to improve their lives and their futures'.[47] This statement could easily apply to all people with disabilities.

Recommendation 84

16.52    That the Commonwealth and the States continue to implement programs and strategies to improve access to educational opportunities for people with disabilities, including the recommendations of the Senate Employment, Workplace Relations and Education References Committee report on the Education of Students with Disabilities.

Housing and accommodation assistance

16.53    Submissions and other evidence highlighted the problems people with disabilities have in accessing appropriate housing.[48]

16.54    Access to the various forms of housing tenure is often problematic for people with disabilities. In relation to private rental accommodation, in addition to the high cost of this form of housing, landlords are often reluctant to rent to people with disabilities believing that these people are less able to pay their rent (due to their low incomes) or are less capable of maintaining the rented accommodation in a suitable condition. Much of the housing is also inaccessible for mobility-impaired people with few landlords prepared to allow significant modifications. People with disabilities who own their own home often have additional cost burdens associated with financing necessary modifications to their homes.

16.55    Although people with disabilities receive preferential treatment when applying for public housing, with the decline in public housing stock over recent decades, there are increasingly long waiting lists of up to 18 months in many States. Disability Action stated that people with disabilities often find accommodation in community housing with many housing associations providing very good services.[49] In 2001-02, there were 172 community housing providers that targeted people with a disability, and these providers assisted 4318 households with a disability.[50] Housing co-operatives have also increased their intake of people with disabilities in recent years with varying degrees of success.

16.56    Supported accommodation services provide assistance to people with disabilities who are homeless, or who are at risk of homelessness. Overall, people on disability pensions accounted for 17 per cent of SAAP clients and this group had by far the highest repeat use of SAAP services.[51] Access to emergency housing for people with disabilities, in particular with physical disabilities, in very inadequate. Hostels, which often provide accommodation for people with intellectual disabilities, vary in the standard of accommodation provided, with some providing excellent services, others less so.

16.57    The specific housing problems of people with particular disabilities were highlighted during the inquiry. SANE Australia reported that people with a psychiatric disability experience a lack of accommodation options and risk becoming homeless. The organisation noted that some 45 per cent of people with a psychiatric disability live in hostels, institutions and similar accommodation, with around 11 per cent 'effectively homeless'. Mentally ill people also live in caravan parks and can be the subject of heavy exploitation.[52] Blind Citizens Australia noted that people who are blind need to live close to transport and amenities to be able to use these facilities independently but this imposes significant financial costs. People who are unable to afford the additional costs of living close to services are instead paying a high price in terms of social exclusion and lost opportunities for participation in the wider community.[53]

16.58    Over recent decades there has been a consistent trend towards the provision of more community-based accommodation services, relative to institutional-style 'cared accommodation' for people with disabilities. The largest increase in community living in recent decades has been in the rate and number of people with a severe or profound restriction living with their families.[54] However, often there are not sufficient supports for families caring for people with disabilities. One witness noted that 'neighborhoods have deteriorated, so you cannot ask your neighbour to look after your daughter for a day or half a day; that is, people who volunteered in the community in more informal systems...were not as readily available'.[55] There is also a lack of extended family support that was available to many families in past years.

16.59    Another problem highlighted was that of ageing parents caring for children with disabilities. These children will eventually need appropriate accommodation places – which are in increasingly short supply – when parents are unable to continue caring for them.[56]

There are many out there who are really worried about the future of their children because of their age – it is not so much the age of the child; it is the age of the parents that is the worry...Most parents are willing to care for their son or daughter, young or adult, at home but they need arrangements for the future to be in place. This issue is about elderly parents worrying for years about what will happen to their child and about where the child will be when they, the parents, die.

Committee Hansard 30.6.03, p.767 (Mrs Fidler, Ballarat).

16.60    The Committee believes that the current housing assistance programs and services need to be maintained and expanded. In chapter 6, the Committee made a number of recommendations to address the housing needs of low income people and it believes that people with disabilities will benefit from the implementation of these recommendations. In addition, the Committee has recommended that a disability allowance should be introduced and that this allowance should take into account the additional housing costs of people with disabilities, such as the need for housing modifications.


16.61    Transport in terms of affordability and access poses problems for many people with disabilities.[57] Transport is important in facilitating access to employment, educational facilities, and health and community services, all of which are important in alleviating poverty. Transport also plays a vital role in providing access to social and community life.

16.62    The States provide public transport concessions for people with disabilities. The States also operate taxi subsidy schemes; however, the nature and extent of these schemes varies considerably between States. The Physical Disability Council argued that there needs to be commonality between the various State schemes.[58]

16.63    At the Commonwealth level, the Mobility Allowance is paid to people engaged in paid or voluntary work, training or job seeking, who are unable to use public transport without substantial assistance. This allowance provides some assistance but because it is exclusively focused on employment participation it excludes people not in the workforce such as aged persons. The allowance is not related to the actual cost of transport but is a fixed amount – with evidence suggesting that the level of allowance paid is not sufficient to meet the transport needs of many people with disabilities.[59] Private transport often involves expensive modifications to enable it to be used by people with disabilities.

16.64    Public transport is often difficult to use for certain people with disabilities, and is virtually non-existent in rural and remote areas. In relation to blind people, one submission noted that 'public transport is often not an option because of the inaccessible design of transport infrastructure and other factors related to safety and timeliness. Like other people living in regional and rural locations, people who are blind are adversely affected by the paucity of public transport infrastructure in these areas, however, unlike others, they do not have the alternative option of driving. In such cases, taxis are essential'.[60]

16.65    The Committee believes that the transport needs of people with disabilities need to be addressed and urges the Commonwealth and States Governments to expand assistance in this area to address unmet needs. The Committee also believes that its recommended disability allowance needs to take account of the additional transport costs of people with disabilities.

Access to information

16.66    Access to information in appropriate formats is also an important issue for people with disabilities. For blind people, for example, the increasing reliance on computer aided technology imposes costs in acquiring the types of adaptive equipment and technology required so that they can access basic information, for example, braille note takers and computers.[61]

16.67    At present there are no Commonwealth subsidies available for the purchase of equipment or technology outside the workplace. The Committee believes that its recommended disability allowance needs to take account of the additional information and technology-related costs of people with disabilities.

Support and assistance for carers

16.68    The financial hardship faced by many carers of children or adults with a severe physical, intellectual or psychiatric disability was raised during the inquiry. It was emphasised that the current income system does not adequately remunerate carers for the contribution to care that they make.  Some case studies are provided below.

Carers – the constant struggle

Daniel's wife has schizophrenia and his 15 year old son has multiple disabilities: intellectual and ADHA. Daniel also has a 7-year-old son who is hyperactive. Daniel has been a full time carer since 1993 when he resigned from work to care for his wife and son. He has been on the Carer Payment since 1995. Daniel and hid wife live in a Ministry of Housing home for which they pay rent. He has a bank debt, which causes him significant anxiety. His current electricity account is $811 and he does not know how he will pay this. He "robs Peter to pay Paul" is his expression of how he sometimes juggles accounts when they come in.

Submission 33, pp.5-6 (Carers Australia).

Donna has cared for her daughter Allison from the day of her birth 25 years ago. Allison has a severe intellectual disability and suffers from uncontrolled epilepsy. Her seizures can come at any time of the day and they are life threatening. In the last 23 years Donna has battled with agencies to receive some respite services and assistance with care....The many years of such stressful caring have taken a toll on Donna, she herself has developed an anxiety disorder and depression. Over the years her marriage has broken up and she has felt abandoned in her attempts to keep Allison at home by her family.

Submission 158, p.28 (Disability Action).

16.69    Commonwealth income support for carers includes the following payments:

Financial security for carers

16.70    Financial security is a major concern for many carers, particularly primary carers. There were an estimated 2.3 million carers in Australia in 1998 according to the most recent ABS survey of disability and carers, and 450 000 primary carers. These carers, who are usually family members, provide unpaid work at home for children or adults who have a disability, chronic condition or who are frail aged. Of the 2.3 million carers, 59 per cent combined their caring role with full-or part-time work, with the majority employed full-time (63 per cent). Among the employed 158 200 primary carers, only 48 per cent were employed full-time.[63]

16.71    Carers Australia, citing results form the ABS 1998 disability and carers survey found that almost half (49 percent) of primary carers of working age were dependent on government income support. Carers Australia stated that the financial hardship faced by many carers is the result of the limited access to social security payments; the inadequacy of these payments; the necessity of having to give up paid employment; and the extra costs incurred in their caring role – and the inadequate level of the Carer Allowance in offsetting these costs. While the Carer Payment and Carer Allowance provide some recognition of the circumstances of carers, neither payment is adequate compensation for the costs incurred in caring, or the services that family and other informal carers provide.[64] Carers Australia noted that:

For most carers life is somewhat of a daily struggle of competing demands, but for those living on low incomes everyday living can be particularly difficult. The majority of carers are in fact of workforce age and many would like to work, but their caring responsibilities are significant barriers to full-time work and to having careers. Many have to be content with low-paid and insecure jobs, if they can get work at all.[65]

16.72    Carers Australia argued that income support arrangements for carers could be improved by doubling the rate of Carer Allowance to $90.10 per week in recognition of the high cost of care incurred by the carer; and that people receiving the Carer Payment should be automatically eligible to receive the Carer Allowance. ACOSS similarly argued that Carer Allowance should be paid to the primary carers of adults and children with disabilities that require a level of care that is sufficient to qualify for Carer Payment. Carers Australia also argued for the introduction of a transport allowance for primary carers to assist the carer in their caring responsibilities and enable the carer to access services and participate in community activities.[66]

Respite care

16.73         Evidence also indicated that more respite care needs to be available for carers. In relation to the unmet needs of carers, the AIHW study referred to earlier, noted that in 1998 there were an estimated 23 600 primary carers of people with disabilities aged under 65 years who reported that they had never received respite care but needed it, and a further 17 000 who had received it at some stage but needed more. In relation to older carers, it was estimated that 5300 primary carers had either never received respite and wanted it, or had received it in the previous three months but wanted more.[67]

16.74         A number of respite care programs currently operate. The National Respite for Carers Program funds Commonwealth Carer Respite Centres, State-based Commonwealth Carer Resource Centres, and a number of projects to assist carers of people with dementia. Funding for the program increased from $19 million in 1996-97 to $88 million in 2002-03. Residential respite care also provides assistance to carers facing other critical demands, their own health or personal needs, and the opportunity to take a holiday or participate in lifestyle activities. In 2001-02, almost half of all admissions to residential aged care were for respite care.[68]

16.75    Evidence also emphasised that respite care needs to be delivered in more flexible ways. Carers Australia noted that:

The respite out there at the moment is largely supplier driven rather than demand driven, so the carer has to fit in with what is available rather than the other way round. We need a big change in attitude from the supplier point of view to make it much more flexible.[69]

16.76    Carers Australia also drew attention to particular subgroups of carers that are likely to face financial difficulties, including:

Recommendation 85

16.77    That the Commonwealth Government review:

Recommendation 86

16.78    That where young carers have primary care responsibilities in their families, adequate financial support measures be available,  including removing current restrictions that discourage young people from combining paid work or study with their caring responsibilities.

Recommendation 87

16.79    That, as a matter of priority, the Commonwealth relax the rules for adult carers who live adjacent or near to the person they are caring for to enable them to receive Carer Allowance.

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