Carer Payment (child): A New Approach Report of the Carer Payment (child) Review Taskforce


Acknowledgments

The Taskforce is grateful to the many thousands of carers and representatives of organisations who took the time to provide submissions and attend meetings. The information provided was vital in supporting the Taskforce’s understanding of the many issues and challenges faced by carers of children with severe disability or medical conditions.

Thanks are also due to the Australian Government for utilising significant resources to ensure that carers were aware of the review.

The Taskforce would also like to thank the Department of Families, Community Services and Indigenous Affairs, which provided secretariat services to the Taskforce. The secretariat provided significant assistance and input to the review.

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Letter to the Minister

The Hon Jenny Macklin MP
Minister for Families, Housing, Community Services and Indigenous Affairs
Parliament House
Canberra ACT 2600

 

Dear Minister,

I am pleased to present the final report of the Carer Payment (child) Review Taskforce.

In March 2007, the Taskforce was appointed to examine the eligibility criteria for Carer Payment (child), consider its effectiveness as a safety net for carers of children with a severe disability or medical condition and provide advice to government by 30 November 2007.

After a wide ranging consultation process, the Taskforce is recommending fundamental changes to the eligibility for Carer Payment (child). The key to these recommendations is that eligibility should be assessed based on care needed and care provided, where that care precludes carers from substantial workforce participation.

The Taskforce is recommending an assessment approach that will provide consistent eligibility and transparency based on the caring load and the impact on opportunities for workforce participation.

Other key recommendations include the need for improved service delivery, better information and access to payment, changes to address the diverse circumstances of carers, consideration of the range of financial supports for carers and increased carer recognition at the national level.

The report details the process of community engagement, flaws in the current assessment process, relationship with other payments and opportunities for change.

Given the very significant public interest in the process the Taskforce recommends that the report be made public.

Yours sincerely

 

Mr A S Blunn AO
Chairperson
Carer Payment (child) Review Taskforce
30 November 2007

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Executive Summary

Background

The Carer Payment (child) Review Taskforce was established in March 2007 to examine the eligibility criteria for Carer Payment (child) and to consider the effectiveness of the payment in providing a safety net for children with a profound disability or severe medical condition1.

The terms of reference, the membership of the Taskforce and the processes employed during the review are set out in chapters 1 and 2. The Taskforce’s recommendations are listed at the end of this summary.

Carer Payment is an income support payment for carers who, because of the demands of their caring role, are unable to support themselves through substantial participation in the workforce. Carer Payment is not intended to compensate either the carer or the care receiver for the disability nor does it recognise the costs of care resulting from the disability.

At the outset, it is important to recognise that Carer Payment is a pension payment with two streams: an adult stream, known as Carer Payment (adult); and a child stream, called Carer Payment (child). While the two streams are paid at the same rate as the age pension, are subject to income and asset testing, and entitle recipients to a Pensioner Concession Card, different eligibility and assessment criteria apply to each stream.

Most carers in receipt of Carer Payment (child) will also be entitled to Carer Allowance (child). While Carer Payment (child) is an income support payment paid at pension rates,2 Carer Allowance (child) is a supplementary payment of $98.50 each fortnight, which is described as being paid in recognition of the caring role.

At June 2007, there were around 3,570 Carer Payment (child) recipients, accounting for just over 3 per cent of all Carer Payment recipients (around 116,600 recipients in total). In contrast, there were around 109,100 Carer Allowance (child) recipients, accounting for 28 per cent of all Carer Allowance recipients (about 393,300 in total).

This review focuses on Carer Payment (child).

The Taskforce proceeded on the premise that the objective of Carer Payment (child) is to enable carers to provide the care and attention required by children diagnosed with severe disability or medical conditions. For a carer to qualify for Carer Payment (child), the care provided must be significantly more than the care required by a child of comparable age who does not have severe disability. The need for care must be continuous and the provision of care must be constant. The caring load must be such that carers are unable to support themselves through substantial workforce participation.

The Taskforce has accepted that the payment of Carer Payment (child) is recognition that caring for a ‘profoundly disabled child’3 is a full-time, multiskilled and very demanding job that leaves little or no time for other activities. It is, as discussed in chapters 3 and 4, unquestionably a role of immense social and economic value. The care provided often means the difference between life and death for the care receiver.

The Taskforce is aware of statements to the effect that Carer Payment (child) was originally intended for carers involved in providing the highest levels of care, more or less equal to institutional care, who were therefore precluded from substantial workforce participation. Despite those statements, the Taskforce notes that the history of the payment and related government assistance has been one of progressive expansion.4

On the basis of its appreciation of the underlying purpose of Carer Payment (child) and as a result of its review, the overwhelming conclusion of the Taskforce is that the payment is not an effective safety net in capturing all carers of children with severe disability or medical conditions who require access to income support.

Consultation: the need and the result

As part of its processes, the Taskforce was required to engage with the community to establish the range of concerns about accessing Carer Payment (child). The details of the processes employed are set out in Chapter 2 and Appendix B.

The response was overwhelming. The Taskforce received over 4,000 submissions and more than 25 focus groups were held with stakeholders and self-selected carers over an eight-week period. The results of the consultations established that the current eligibility criteria and assessment processes result in decisions not to grant payment to carers whose caring role is at least as great as carers who qualify for Carer Payment (child). The process also established that there is confusion about the available assistance, particularly the difference between Carer Payment (child) and Carer Allowance (child). These issues are discussed in Chapter 3.

Throughout the report, to illustrate specific issues the Taskforce has drawn on the anecdotal evidence it collected through the submission process. Extracts from submissions are identified separately in the body of the report. These submissions from carers were very powerful and often deeply moving in describing the impact of the caring role on care receivers, the carers themselves and their families.

The submissions provide a rich source of material for further work on issues relating to caring. The Taskforce strongly supports making the consultation report publicly available, with the appropriate consents. The Taskforce is indebted to all those who, by telling the Taskforce about their experiences, gave real meaning to the work of the review.

‘We need help, we are all crying out for help. Locked in our homes by our own children’s conditions. Hidden from sight.’

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Challenges and critical role for carers

The Taskforce recognises the vitally important role of carers and acknowledges that the willingness and ability of carers to provide care is an integral component of the broader care system. Their contribution is central to sustaining the current system of community-based, person-centred care.

Submissions to the Taskforce and feedback received from focus groups highlighted the broad range of tasks carers perform and the ways in which the caring load affects carers, families and relationships.

The major challenges for carers identified in the consultation process were:

  • impact of the caring role on carers and their families, and the level of care required beyond that of a usual parenting role;
  • eligibility criteria and assessment processes for access to Carer Payment (child) and the fact that these processes do not measure care load;
  • complexity of the application process and the role of health professionals in verifying claims for payment;
  • inadequacies in the service delivery system in helping carers to access information and assistance;
  • lack of recognition of different care arrangements, such as shared care, short-term and episodic care, and multiple caring responsibilities;
  • the financial costs of disability and the costs of caring;
  • workforce participation; and
  • the relationship between carer payments and other social security payments, and the lack of a smooth transition between child and adult carer payments.

These issues are discussed in detail in Chapter 4.

The evidence available to the Taskforce established that carers experience particular challenges in the form of financial hardship, severely reduced employment and educational prospects, lower levels of health and wellbeing, chronic grief and/or anger, and limited opportunities to build and maintain social networks and to participate in community life.

Many carers expressed a desire to enter or re-enter the workforce when care requirements allow; however, they report numerous additional barriers to workforce participation. Better access to appropriate, flexible child care for children with high care needs and access to the full range of Job Network assistance will assist Carer Payment (child) recipients who want to access employment or training opportunities. Employers could also be assisted to provide employment options and flexible working arrangements for carers.

The most commonly identified issue in the submissions was the unremitting nature of the role.

‘You are constantly on duty 24 hours a day, seven days a week. This role will continue until the child dies, or if I predecease my daughter. Most intensive parenting duties decline as the child grows and matures, [but] this is not the case for a child with a severe disability. I will have to be on call 24/7 until the day I die.’

Caring for a child with severe disability or medical conditions requires the carer to develop the skills necessary to recognise, understand and manage the nature and complexities of the disability or condition, often to a high level of proficiency.

Throughout the review process, issues with the way Carer Payment (child) is structured and administered were identified as major sources of concern. Not surprisingly, as the public face of payment service delivery, Centrelink received some critical comment.

At least in part, those criticisms should be directed at the inherently problematic nature of Carer Payment (child). The legislated process is inflexible and complicated.

There is enough evidence to indicate that there are problems with Centrelink’s administration of the program. These are elaborated in Chapter 4, but in the view of the Taskforce the issues that need to be addressed relate to:

  • improving the public understanding of the nature and availability of the program, and the difference between Carer Payment (child) and Carer Allowance (child);
  • closer cooperation with external stakeholders, such as health service providers, to ensure they understand the requirements and processes, and are equipped to assist carers in accessing support;
  • additional training for staff to facilitate the efficient and cost-effective delivery of the payment, including the liaison role with external stakeholders; and
  • the content and design of the forms used to apply for relevant payments.

The Taskforce notes and strongly supports the Centrelink initiative of trialling specialised offices which deal predominantly with customers on similar income support payments (such as carers and seniors). It also recognises that Centrelink is aware of and seeking to respond to many of the issues raised as part of the consultation process.

The costs of caring and the costs of disability were also identified as major issues. In addition to the opportunity cost of not being available for paid work, these costs include specialist medical treatment, medication, medical supplies, specialist clothing, therapists, specialist behaviour and learning programs, equipment and aids, home and equipment modifications, and additional travel and transport.

While it was asked only to identify the challenges and critical role of carers of children with severe disability or medical conditions, the Taskforce was satisfied that this role far exceeds the expectations of the caring role of parents of children who do not have disability or medical conditions.

‘I’m a person who pays their bills first and then lives on what’s left over. For a long time all I had left for groceries was $5. I’d buy a loaf of bread, a small bag of frozen peas, two onions and a bag of pasta. The next week I would buy the same, but I’d have rice instead. That’s what I lived on. For Christmas lunch and Christmas dinner, Boxing Day lunch and dinner I had one sandwich with a slice of ham and some chutney someone had given me for a Christmas present. … To pay an electricity bill I had to sell the first ring a boy ever gave me. I got $10 for it. I felt really sad that day.’

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Eligibility for Carer Payment (child)

The Taskforce was asked to compare the circumstances of carers in receipt of Carer Payment (child) to those who in recent cases have not qualified. The Taskforce assumed that the recent cases referred to were those where alternative assistance was provided.

For a carer to be eligible for Carer Payment (child):

  • the child cared for must meet the very restrictive legislative definition of a ‘profoundly disabled child’;5
  • the care provided must be constant;
  • the care must be provided in a private residence that is the home of the care receiver;
  • the carer must be an Australian resident or be covered by a scheduled international social security agreement; and
  • the carer must not be participating in employment or other specified activities for more than 25 hours per week.

Because it is an income support payment, Carer Payment (child) is subject to both income and asset testing.

Through the review process, the Taskforce identified that the perceived inequity of the current eligibility requirements, particularly the need to meet arbitrary and, in the view of many, irrelevant specific circumstances, was a major issue (see Appendix G for a summary of these circumstances).

Many carers are precluded from receiving the payment even though their caring responsibilities may be as great as those of carers who qualify for the payment. The prescription of a small number of very specific circumstances in which the payment may be granted is inflexible and does not accommodate advances in medicine and in medically applied technology. Chapter 5 discusses these issues in more detail. The Taskforce is strongly of the view that the current eligibility criteria are too restrictive and consequently the payment is not effectively achieving its intended purpose.

Assessing care needs: a new approach

According to its terms of reference, the Taskforce was asked to ‘determine the most appropriate mechanism for assessing the care requirements of children under 16 years of age with severe illness and/or disability, including examining options for amending the existing carer and medical eligibility criteria to reflect current medical, technological and carer approaches and practice’.

These issues are dealt with in Chapter 6.

Currently, the mechanism for assessing whether a child meets the definition of a ‘profoundly disabled child’ for the purposes of the legislation depends upon a medical practitioner (often a general practitioner) certifying the condition and the care required. Except in the case of a disability or condition in its terminal stage, it must be certified that the child will require continuous personal care for at least six months and that the condition involves at least three out of seven circumstances or, where the disability involves severe intellectual, psychiatric or behavioural characteristics and the child is at least six years of age, one or more of three circumstances (see Appendix F for more detailed information).

The assessment does not identify the actual level of care required or the level of care provided; rather, it assumes that a particular condition or circumstance implies a level of care need that is being met by the applicant.

For the reasons elaborated in Chapter 6, the Taskforce does not consider this process to be appropriate. It produces inequitable and unfair results, it does not meet the assumed purposes of the payment and it does not allow for any quantitative assessment of the real care needs of the child. It also reflects point-of-time medical criteria, technologies and care approaches and provides no mechanism to respond quickly to these constantly evolving areas.

By way of contrast, the assessment processes used to determine eligibility for Carer Payment (adult) and Carer Allowance are based on the care required and reflect the functional ability of the care receiver. While the diagnosis and prognosis are matters for determination by appropriate medical practitioners, the actual care required could be verified by a range of treating health professionals.

The current assessment system results in many carers of children who by any reasonable standard would be regarded as ‘profoundly disabled’ and whose care requirements are as great as those of children who qualify their carers for Carer Payment (child) being ineligible for payment.

It is the view of the Taskforce that a new approach to the assessment of claims for Carer Payment (child) is urgently needed and should be based on an assessment of the actual care needs of the child. It would still be a requirement that an appropriate medical practitioner certify the diagnosis and prognosis and identify that the child requires care beyond that required by a child of similar age not suffering from a comparable disability or medical condition.

The assessment of the level of care required would have regard to evidence provided by the carer and be verified by an appropriate health professional. As envisaged, the assessment tool would be based on a weighted assessment that reflects the activities of daily living. These activities describe the ability of a person to carry out actions fundamental to self-care and can be applied to a paediatric population with some minor adjustments. An assessment of activities of daily caring, based on activities of daily living, could enable explicit measurement of the intensity and duration of the care required as a result of the child’s disability or medical condition.

There may be a case, at least in some situations, for identifying and verifying the caring role through a team-based system similar to that used to assess aged care needs. Such a move depends on the development of an effective assessment tool. Based on its experience with similar tools, namely the Child Disability Assessment Tool and the Adult Disability Assessment Tool, and having regard to overseas experience, the Department of Families, Community Services and Indigenous Affairs (FaCSIA) has advised the Taskforce it is confident that a suitable tool can be developed.

The Taskforce notes that the development of a suitable assessment tool will be a complex task and that adequate resources will need to be made available. The Taskforce strongly recommends that people with professional expertise in assessments be consulted in the development phase and that the tool be thoroughly tested prior to its introduction. The testing process should involve carers, technical experts and skilled evaluators.

Relationship to other payments

Carer Allowance (child), Carer Adjustment Payment and Child Disability Assistance Payment

Carer Payment (child) is one of a number of payments that recognise the role of carers. Carer Allowance (child) is a supplementary payment for carers, including most recipients of Carer Payment (child), and is paid in general recognition of the caring role. Only one payment of Carer Allowance can be made with respect to each qualifying child. In certain circumstances, two carers may share one Carer Allowance payment. Carer Allowance (child) is not an income support payment, is not income or asset tested and is not treated as income for taxation purposes. It is, however, the gateway to a number of other payments, including the Carer Adjustment Payment and the Child Disability Assistance Payment. Neither the Carer Adjustment Payment nor the Child Disability Assistance Payment is an income support payment.

The introduction of the Carer Adjustment Payment draws attention to the lack of provision for short-term financial assistance, short-term access to income support and assistance for episodic care needs.

Neither Carer Payment (child) nor Carer Allowance (child) makes provision for the costs of care, although each qualifies the recipient for pharmaceutical benefits and a Pensioner Concession Card in the case of Carer Payment (child) and a Health Care Card for the care Carer Payment (child): A New Approach | Report of the Carer Payment (child) 8 Review Taskforce receiver in the case of Carer Allowance (child). In each of the last four years, an annual bonus of $600 has been paid to Carer Allowance (child) recipients and $1,000 to Carer Payment (child) recipients.

Effectively, both Carer Payment (child) and Carer Allowance (child) provide for situations where it is anticipated that the need for care will be ongoing. Neither is designed to meet sudden needs for financial assistance to cope with emergencies, nor does either payment cater for situations where the need for full-time care is short-term or episodic.

To provide for cases where there is a sudden care need and to overcome the consequences of the restrictive definition of a ‘profoundly disabled child’ in particular cases where the result was seen as unreasonable, the government introduced the Carer Adjustment Payment, which will cease to be available from 1 July 2008. The Carer Adjustment Payment is a one-off, ex gratia payment of up to $10,000 to carers not eligible for Carer Payment (child), or other income support payments, in respect of each child up to six years of age involved in a catastrophic event who, as a result, requires full-time care from a primary carer for at least two months. The intention of the payment is to give families who can demonstrate financial need some assistance in the adjustment period. To qualify for the payment, the carer must be entitled to receive Carer Allowance (child).

While the provision of care is a condition for receiving Carer Adjustment Payment assistance, the Taskforce notes that the assistance is expressly provided on the basis that it can be used for any purpose.

Based on its understanding of the Carer Adjustment Payment experience to date, the Taskforce is of the view that the changes to Carer Payment (child) it has recommended will, if adopted, result in a number of people who currently qualify for consideration under the Carer Adjustment Payment becoming eligible for Carer Payment (child). Where this is not so—for example, where the care is short term and is expected to be required for fewer than six months—the situations that led to the introduction of Carer Adjustment Payment will persist.

Even where Carer Payment (child) is payable, it may not address an immediate need for flexible financial assistance resulting from a catastrophic event. The Taskforce understands that in some circumstances the diagnosis of a terminal condition has been accepted as a catastrophic event for the purposes of the Carer Adjustment Payment.

In the view of the Taskforce, there will be a continuing need for short-term financial assistance to be made available by government to meet the needs of families involved in adjusting to the initial stages of caring for a child who suffers a sudden or severe disability or medical condition. This short-term financial assistance must be distinguished from the issue of income support.

It is also the Taskforce’s view that assistance provided other than by way of income support— for example, as a one-off payment—should have a clear rationale that can be reflected in the design and administration of the payment.

With Carer Allowance (child), the purpose of the payment is less clear. The lack of clarity is compounded by the recent introduction of the Child Disability Assistance Payment as part of Carer Payment (child): A New Approach | Report of the Carer Payment (child) Review Taskforce 9 the Disability Assistance Package. The Child Disability Assistance Payment provides families caring for children who qualify their carers for Carer Allowance (child) with an annual payment of up to $1,000 to help them purchase assistance for these children.

It was evident from the consultation process that carers are not clear about what payment they are receiving. The changes recommended in this report, particularly those relating to better communication and simpler processes, are designed to assist in overcoming this sort of confusion.

The Taskforce has questioned why eligibility for Carer Payment (child) does not automatically entitle the carer to Carer Allowance (child) and has recommended that this be changed. While such a move would result in a small increase in the number of Carer Allowance (child) recipients, it would also reduce administrative costs significantly and reduce confusion about the process.

It was also of surprise to the Taskforce that, given the relative size of the payments, the Carer Allowance (child) assessment process seems more complex than the Carer Payment (child) assessment process.

These issues are dealt with in Chapter 7.

Parenting Payment

The fact that Carer Payment (child) is paid where it is accepted that carers are, because of their caring responsibilities, unavailable for other work invites comparison with Parenting Payment.

Carer Payment (child) is paid at a higher rate than Parenting Payment (Partnered) or Newstart Allowance and has more generous means test limits.

Until the recent Welfare to Work initiatives were introduced for those on income support payments such as Parenting Payment, with some minor exceptions the principal carer of a school-aged child had no obligation to participate in the workforce. As a result of those initiatives, apart from some ‘saved’ groups, parents of children over the age of six will have to meet some workforce participation requirements.

Where, however, a parent is caring for at least one dependent child who has a physical, intellectual or psychological disability or illness, the parent may be exempted from their participation requirements. Exemptions can be granted for up to 12 months and may be extended. The Taskforce is aware that participation requirements may create additional difficulties for parents of children with severe disability or medical conditions who are on Parenting Payment or Newstart Allowance.

While it has not been possible to establish how many carers on Parenting Payment or Newstart Allowance would qualify for Carer Payment (child) if the assessment process were to change, anecdotal evidence indicates that lack of awareness of and confusion about possible entitlements and the difficulties of the process are significant issues.

In particular, the Taskforce recommends that the participation requirements of parent carers in receipt of Carer Allowance (child) who are receiving Parenting Payment or Newstart Allowance be reviewed to ensure that the verification process has greater regard to the circumstances of the carer.

Carer Payment (adult)

An issue raised in the consultation process was the transition for carers from Carer Payment (child) to Carer Payment (adult) when the care receiver turns 16 years of age. Currently, this involves a new application with fresh supporting evidence. The Taskforce questioned why a new application was necessary. For many carers, the care required and provided does not change simply because the care receiver turns 16 years of age. As far as the care receiver is concerned, the significant change is the availability of Disability Support Pension and the need to test eligibility. In the case of the carer, given the stringent tests for Carer Payment (child), the Taskforce questions whether the transition to Carer Payment (adult) could be made automatic or at least subject to a simplified application and review process, unless there are reasonable grounds for believing there may be a relevant change of circumstances.

The Taskforce acknowledges that when applying for Disability Support Pension a care receiver may need to complete an appropriate application form but questioned why the medical evidence used to establish the carer’s eligibility for Carer Payment (child) could not be used for Carer Payment (adult) where appropriate.

Differences between payments

The Taskforce was also concerned about the differences and inconsistencies evident across payments. Those concerns are reflected in Chapter 8 of this report, which identifies four main areas: eligibility reviews, terminal conditions, the role of health professionals and equitable access.

Eligibility reviews

During the consultation process, concerns were expressed about the number of reviews, the need for ongoing medical reviews where the qualifying condition is permanent, the lack of coordination of the process, the time-consuming nature of the reviews and the insensitivity of the process.

The Taskforce recognises that some reviews are necessary and that they will always be a cause of concern for some carers. Many of the concerns will be addressed if the changes to service delivery arrangements and assessment processes recommended in this report are adopted. The Taskforce considers that the review process should be revised by FaCSIA and Centrelink to ensure that reviews are kept to a minimum, coordinated across payments and conducted only when required. The reasons for reviews need to be explained clearly to customers and should be easy to understand. In the Taskforce’s view, as far as possible the review process should reflect the sensitive nature of some caring situations—for example, when the care receiver has a terminal condition.

Terminal conditions

Many of the issues relevant to terminal conditions are dealt with in Chapter 4 of this report, but the Taskforce notes that across payment types there are different definitions that apply to ‘terminal conditions’.

The reasons for those differences could not be established or confirmed. The Taskforce suggests that the issues be examined by FaCSIA and other relevant agencies to see whether a common approach can be adopted or, if not, to articulate the justification for different treatments.

The role of health professionals

The basis for the different roles of health professionals (including medical practitioners) and the different processes involved across payments are unclear. While the recommendations made elsewhere in this report will go some way to clarifying the roles, there is in the Taskforce’s opinion a need to streamline the process. The adoption of a single treating doctor/health professional assessment form, as recommended by the Taskforce, would go a long way to achieving that result and would also reduce costs.

Equitable access

The Taskforce recognises that access to Carer Payment can present particular challenges for Indigenous carers. The different roles and responsibilities in Indigenous communities can result in people not identifying themselves as carers. There are complex rules relating to kinship that can impact on caring roles and responsibilities.

Access can also be a problem for carers from culturally and linguistically diverse backgrounds. Difficulties in understanding the payment types and the forms, language barriers and access to interpreters, and access to health resources and facilities generally, were among the issues identified during the consultations for Indigenous carers and those from diverse backgrounds.

The Taskforce identified equitable access as a major issue and one that requires separate attention. Some of the issues raised are addressed, at least partially, by the recommendations in this report, but the Taskforce recommends that the government do further work in this area.

The new approach for Carer Payment (child)

In the Taskforce’s view, a well-designed system that meets its intended purpose is, by its very nature, cost effective. Implementing the Taskforce’s recommendations will ensure that Carer Payment (child) is well targeted, fit for purpose and administratively efficient in its operations, thereby improving its cost effectiveness. The payment must also be seen in the context of the broader supports available, or not available, to carers. The Taskforce has recommended that the government further examine financial and other supports for carers.

In the Taskforce’s view, there is an opportunity for national leadership in recognising the role of carers in the community through carer recognition legislation and the development of a national action plan for carers. Some state and territory governments have already been active in related areas and their experience could inform the way forward.

The Taskforce expects that the recommended changes to the administration of the payment, particularly the assessment process, will result in an increased number of carers becoming eligible for payment.

In addition to amended eligibility criteria to measure the level of care required and provided, the Taskforce has recommended the following administrative improvements:

  • provision for multiple care responsibilities equivalent to the care of a child with profound disability—for example, care of an adult and a child;
  • payment for short-term or episodic care situations;
  • removal of the limit on the allowable number of hospital admission days, subject to appropriate review;
  • recognition of shared care arrangements resulting from court orders or parenting plans;
    and
  • revised eligibility requirements and review arrangements in respect of terminal conditions.

The diagram at the end of the list of recommendations provides a graphical representation of the key elements of the proposed new approach.

The Taskforce also acknowledges that a cornerstone in any improved system of assistance and support must be choice and flexibility in the options available to carers.

1 Throughout the report, where possible the Taskforce has used the term ‘children with severe disability or medical conditions’ to refer to children who have severe impairment, activity limitations or participation restrictions, including physical, intellectual or psychological disability or impairment; terminal conditions; or physical or psychiatric illness. The Taskforce notes there is no internationally accepted standard terminology and, while the term chosen may not have universal acceptance, in the Taskforce’s opinion it best describes the population under consideration.

2 The current maximum pension payment rate is $537.70 per fortnight (single) or $449.10 per fortnight each (couple), including the pension supplement.

3 This term is defined in section 197(2), (2AA) and (2A) of the Social Security Act 1991 (see Appendix F).

4 See Appendix E for a history of government financial assistance for carers.

5 See Appendix F for the relevant extract from the Social Security Act 1991.

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Recommendations

Chapter 3

Recommendation 1

The Taskforce recommends that the Australian Government recognise the role of carers and introduce carer recognition legislation and a national action plan for carers.

Recommendation 2

The Taskforce recommends that the government ensure clear and readily accessible information is available about the Carer Payment (child) and Carer Allowance (child) and their purpose, and consider revising the current payment names to more accurately differentiate the intent and nature of each payment.

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Chapter 4

Recommendation 3

The Taskforce recommends that the government review the overall costs of caring and costs of disability incurred by carers and children with severe disability or medical conditions in light of the adequacy and availability of current payments and other financial support for carers.

Recommendation 4

To support participation in the workforce by carers of children with severe disability, the Taskforce recommends that the government:

  • examine options to increase the availability of suitable child care, including before and after school and vacation care, for children with high care needs;
  • improve access for Carer Payment recipients to the full range of Job Network assistance, including intensive or specialist support;
    and
  • examine ways to assist employers to provide employment opportunities and develop consistent and flexible policies and practices for carers.

Recommendation 5

The Taskforce recommends that a provision be made to cater for situations where multiple care responsibilities for people of any age with disability are equal to the care required by a single child with profound disability, as currently defined in legislation (which will require amendments to section 198 of the Social Security Act 1991).

Recommendation 6

The Taskforce recommends that the application process for those claiming Carer Payment (child) on the basis of two or more children with disability be altered as soon as possible to clarify the requirements.

Recommendation 7

In order to better support carers’ labour force participation, the Taskforce recommends that the government examine options for providing income support payments in situations where carers are temporarily unable to work due to the need to provide care on an episodic basis for a child with a severe disability or medical condition.

Recommendation 8

The Taskforce recommends that the government recognise the need for ready access to short-term assistance for carers of children with disability, including tailored assessment and review arrangements that allow quick access to payments in extreme circumstances.

Recommendation 9

As Carer Payment (child) does not provide additional financial assistance to families in the adjustment period following a catastrophic event that results in children requiring high levels of care, the Taskforce recommends that the government consider a form of assistance that addresses this need.

Recommendation 10

The Taskforce recommends that the government reconsider the assistance provided through Carer Allowance (child), the Carer Adjustment Payment and the Child Disability Assistance Payment with a view to establishing a rationale for the assistance being provided that can be reflected in the administration of the payment or payments and that the provision of such assistance be continued in some form and regularised.

Recommendation 11

The Taskforce recommends that the government review the arrangements for temporary cessation of care for Carer Payment (child) to remove the limit on the allowable number of hospital admission days, subject to appropriate review arrangements.

Recommendation 12

The Taskforce recommends that eligibility for Carer Payment (child) recognise situations where parents have shared caring responsibilities that are endorsed by the courts or articulated in an agreed parenting plan and these arrangements preclude each parent from substantial workforce participation.

Recommendation 13

The Taskforce recommends that section 197(2)(c)(vi) of the Social Security Act 1991— which requires that a medical practitioner certify in writing that the child has a terminal condition for which palliative care has replaced active treatment—be amended to remove the provision.

Recommendation 14

The current requirement in section 197(2A) of the Social Security Act 1991 for a medical professional to certify that a child has a terminal condition and will not live for substantially longer than 12 months should be replaced with a process that assesses the average life expectancy for a child with the same or a similar condition.

Recommendation 15

The Taskforce recommends that the current requirement in section 197(2A) of the Social Security Act 1991 relating to terminal conditions and the life expectancy of a child be amended from the current 12 months to an average life expectancy not substantially longer than 24 months.

Recommendation 16

The Taskforce recommends that the frequency of periodic reviews for a carer in receipt of Carer Payment (child) for a child with a limited life expectancy be extended from six months to 12 months.

Recommendation 17

To improve service delivery for carers of children with severe disability or medical conditions, the Taskforce recommends that:

  • Centrelink and the Department of Families, Community Services and Indigenous Affairs work together to develop and implement a more targeted service delivery strategy to ensure services meet the needs and circumstances of carers applying for Carer Payment (child);
  • Centrelink forms, letters and data-capture and data-exchange arrangements in relation to carers be further reviewed, noting the work already completed through the Colbeck review, to ensure they are appropriate; and
  • carers receive appropriate information, advice and support, particularly in the first 12 months after contact with Centrelink, through dedicated case coordinators.

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Chapter 5

Recommendation 18

The Taskforce recommends that the eligibility criteria for Carer Payment (child) be amended to recognise the level of care required by and provided to children with severe disability or medical conditions.

Chapter 6

Recommendation 19

The Taskforce recommends that a revised assessment process for Carer Payment (child) eligibility based on the level of care required by the child with disability or severe medical conditions and the amount of care actually provided by the carer be established through a disallowable instrument.

Recommendation 20

The Taskforce recommends that the Social Security Act 1991 be amended to give effect to Recommendation 19.

Recommendation 21

In implementing Recommendation 19, a new assessment tool should be developed that:◗ takes into account the level of care required for a child with severe disability or medical conditions;

  • has regard to the current Adult Disability Assessment Tool and Child Disability Assessment Tool processes;
  • is informed by existing standardised functional assessments appropriate for use with a paediatric population;
  • pays attention to cognitive and behavioural issues, as well as functional and special care needs; and
  • ensures any transitions from Carer Payment (child) to Carer Payment (adult) are easy and straightforward, particularly if the child’s condition and/or level of care need have not changed.

Recommendation 22

The Taskforce recommends that the assessment process allow carers to provide details on the amount and type of care they are providing.

Recommendation 23

The Taskforce recommends that the government review the allowable medical, health and other professionals who can verify claims for Carer Payment (child) and Carer Allowance (child).

Recommendation 24

The Taskforce recommends that recent evidence held by the carer that provides a sufficient level of detail about the child’s disability and/or medical condition be allowed to support a claim for payment.

Chapter 7

Recommendation 25

The Taskforce recommends that Carer Payment (child) recipients be automatically eligible for Carer Allowance (child).

Recommendation 26

The Taskforce recommends that participation requirements for parent carers in receipt of Carer Allowance and a relevant income support payment be reviewed to ensure that verification requirements have greater regard to the individual circumstances of carers.

Recommendation 27

The Taskforce recommends that the transition from Carer Payment (child) to Carer Payment (adult) be streamlined.

Chapter 8

Recommendation 28

The Taskforce recommends that an appropriate review regime be developed for carers receiving Carer Payment (child) and Carer Allowance (child).

Recommendation 29

The Taskforce recommends that, where appropriate, the government introduce a single treating doctor report/health professional assessment form.

Recommendation 30

The Taskforce recommends that the government undertake further work to ensure that the barriers facing carers from Indigenous and culturally and linguistically diverse backgrounds in accessing Carer Payment (child) are recognised and addressed.

Recommendation 31

The Taskforce recommends that the government ensure there is effective access to Carer Payment (child) for carers in rural and remote areas.

Chapter 9

Recommendation 32

The Taskforce recommends that the issues raised in submissions to the review that were outside the Taskforce’s terms of reference be further considered by government.

Key Features of the Carer Payment (child) Review Taskforce Recommendations

Key Features of the Carer Payment (child) Review

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Chapter 1: Introduction

Review Taskforce

On 23 March 2007, the Australian Government announced a wide-ranging review of Carer Payment (child) to examine eligibility for the payment and its effectiveness in providing a safety net for carers of children with severe disability or medical conditions. The review was conducted by an independent Taskforce appointed by the former Minister for Families, Community Services and Indigenous Affairs, the Hon. Mal Brough.

The Carer Payment (child) Review Taskforce was chaired by Mr Anthony Blunn AO, and its members were:

  • Mr Brian Babington,
  • Mr Byron Davis,
  • Professor Stewart Einfeld,
  • Ms Lois Gatley,
  • Mr Michael Gourlay,
  • Ms Cate McKenzie,
  • Professor Frank Oberklaid,
  • Ms Elizabeth Robinson, and
  • Ms Linda Webb OAM.

Biographical details of Taskforce members appear at Appendix A.

The Taskforce met on five occasions between 10 May and 22 November 2007, and its work was supported by a secretariat located within the Department of Families, Community Services and Indigenous Affairs (FaCSIA).

Terms of reference

Carer Payment is an income support payment for carers who, because of the demands of their caring role, are unable to support themselves through substantial participation in the workforce. The payment is income and assets tested.

Carer Payment (child) is available to carers in respect of children under 16 years of age.

The Carer Payment (child) Review Taskforce was required to examine the eligibility criteria for Carer Payment (child) and consider the effectiveness of the payment in providing a safety net for carers of children with severe disability or medical conditions.

The Taskforce was required to report to government no later than 30 November 2007.

In considering these issues the Taskforce was asked to:

  1. Engage with the community and key stakeholders through the development of a discussion paper and public submission process, and other relevant consultative activities, to establish the range of concerns held in the community about accessing Carer Payment (child).
  2. Identify the challenges and critical role for carers of children with significant care needs, which go beyond the expectations of the caring role of a parent of a child who does not have a severe disability or medical condition.
  3. Determine the most appropriate mechanism for assessing the care requirements of children under 16 years with severe illness and/or disability, including examining options for amending the existing carer and medical eligibility criteria to reflect current medical, technological and carer approaches and practice.
  4. Compare the circumstances of carers of children under 16 years with severe illness or disability that currently qualify for the payment with recent cases which have not qualified, drawing on Carer Payment (child) and Carer Allowance (child) application, eligibility and recipient data and case studies.
  5. Consider the relationship of Carer Payment (child) to other income support payments and government financial assistance, including the possible need for short-term financial assistance in some circumstances.
  6. Develop advice to the government on practical and cost-effective options to extend Carer Payment (child) to provide an effective safety net for carers of children with severe disability or illness.

This report examines each of the terms of reference and makes recommendations for improvements to Carer Payment (child).

Documents associated with this report

A suite of documents has been produced as a result of the review. In addition to this report, these documents include:

  • a discussion paper developed to assist with consultation activities;
  • the Review of Carer Payment (child) Report on the Consultations, which is an overview of the review’s submissions and focus group activities prepared by the Social Policy Research Centre at the University of New South Wales;
  • the Review of Carer Payment (child) Statistical Compendium provides information on children with disabilities and their carers and the Carer Payment and Carer Allowance population which is an analysis of relevant Australian Bureau of Statistics data and Centrelink administrative data; and
  • Carers’ Storybook a compilation of carer stories published by FaCSIA.

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Chapter 2: Community Engagement

The Taskforce developed a discussion paper and conducted a public submission process, and other consultative activities, to help establish the range of concerns held in the community about access to Carer Payment (child). The Taskforce was very appreciative of the time and effort carers took to share their experiences and of the detail they provided, which helped the Taskforce to understand the impact of the caring role and access to payments. The concerns raised were a major focus for the Taskforce and were of enormous value to the review.

Review process

The Taskforce engaged with the community and key stakeholders in a number of ways. Commencing on 26 May 2007, advertisements seeking submissions were placed nationally in around 450 metropolitan and rural newspapers. A discussion paper was distributed to more than 300 interested parties in June 2007. Letters enclosing a submission template were mailed to people who were in receipt of Carer Payment (child) and Carer Allowance (child) asking about their experiences as carers and any views they had on eligibility for Carer Payment (child).

The Taskforce commissioned a series of focus group sessions across Australia with representatives of stakeholder organisations and with as many self-selected carers as was practicable, given the Taskforce’s time and resource constraints. A summary of the consultation activities is at Appendix B.

The Taskforce received more than 4,000 submissions, the majority of which were from individual carers. Organisations provided 23 submissions.

Themes arising from consultations

The major issues raised during the consultations fell into eight main categories:

  • impact of the caring role on carers and their families, and the level of care required beyond that of a usual parenting role;
  • eligibility criteria and assessment processes for access to Carer Payment and Carer Allowance, and the fact that these processes do not recognise the scope of the care provided;
  • complexity of the application process and the role of health professionals in verifying claims for payment;
  • inadequacies in the service delivery system in helping carers to access information and assistance;
  • lack of recognition of different care arrangements, such as shared care, short-term and episodic care, and multiple caring responsibilities;
  • the financial costs of disability and the costs of caring, including the opportunity cost of not participating in the workforce;
  • the relationship between carer payments and other social security payments, and the lack of a smooth transition between child and adult carer payments; and
  • issues relating to education and school participation for children with severe disability or medical conditions, and the broader carer support system.

This report addresses issues raised by carers and other interested parties during the consultation phase that fell within the scope of the Taskforce’s terms of reference; however, a number of matters did not fall within the scope of the terms of reference. While this report does not deal directly with all these matters, the Taskforce has included some findings and recommendations on matters strictly outside its terms of reference where the issues were considered to be of importance to the review.

A summary of themes raised appears in the Report on the Consultations, which has been produced as a separate document. The report was commissioned to provide an analysis of the submissions received and transcripts from focus groups and targeted consultations. An extract from the report on the major themes appears at Appendix C.

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Chapter 3: Context

This chapter provides an overview of the current situation for carers in Australia, including data about the carer population, the types of assistance available for carers, and application and eligibility arrangements for Carer Payment (child).

The role of carers

According to a 2003 survey by the Australian Bureau of Statistics (ABS),6 one in five people in Australia had a reported disability. Around 317,900 children (one in 12) had a disability and around half of those had a severe or profound core activity limitation, which means they always or sometimes needed assistance from another person with self-care, mobility and/or communication.

The ABS estimated that there were 2.6 million carers who provided some assistance to those who needed help because of disability or age. Around one-fifth of all carers were primary carers, and approximately 54,600 primary carers were co-resident with children aged 0–14 years with severe or profound core activity limitations. The majority (80 per cent) of assistance with self-care for children with severe or profound core activity limitations was informal only.

The term ‘informal’ is used to describe unpaid care, which in the case of children is usually provided by parents or other family members at home. It is not intended to imply, however, that the care provided is casual or without structure. Caring for children with severe disability may involve feeding, washing, dressing, assisting with mobility and communication, managing serious medical conditions and providing therapy. It may also involve assisting the child at school in the classroom. The Taskforce acknowledges that informal carers perform many vital roles and that the willingness and ability of carers to provide care is an integral component of the broader care system. Their contribution is central to sustaining the current system of community-based, person-centred care.

The Taskforce acknowledges the diverse and often complex relationships that exist in caring situations and in the community more broadly, as well as their changing nature over time. Submissions to the Taskforce and feedback received from focus groups highlighted the broad range of tasks carers perform and the significance of the caring load on carers, families and relationships. These issues are discussed further in Chapter 4 under ‘Impact of the caring role’. Caring can be episodic, short term or long term. Never is the caring role static.

In particular, the Taskforce was conscious of the fact that Carer Payment (child) recognises that caring for a child with profound disability is usually a full-time, multiskilled job. Providing constant care leaves little or no time for the activities of normal life. The caring role is one of immense social and economic value.

It cannot be overemphasised that the care provided is often the difference between life and death.

Carers report providing physical assistance with personal care tasks and general activities of daily living, home-based therapy programs, transport to medical appointments, management and maintenance of special care devices, or close supervision and verbal prompting for reasons of safety.

The impact on carers of ongoing developments in medical treatments and technologies was also clearly identified through the consultation process. It is apparent that carers require a high level of knowledge and skill in order to safely support care receivers and, in a significant number of cases, to sustain their lives. Carers often perform complex special care tasks frequently, over prolonged periods (during the night as well as the daytime) in difficult circumstances and with minimal support from formal care or community health services.

‘Please remember that parents do not choose to have children with disabilities. They are faced with a lifelong responsibility of caring for their child and the ongoing stress is significant.’

… … …

‘She is a vital, energetic young lady. Her life is full of complex medical procedures. She wakes each day to a routine of drugs, inhaled antibiotics and elaborate physio routines. Despite all this she still sings, laughs and takes on the day with such gusto.’

‘Care load’ as described by carers of children with severe disability or medical conditions was
one of the major themes emerging from the submissions and consultations. Carers stressed
the impact that caring for a child with disability has over and above that experienced by
families caring for a child of the same age without disability. The care needs of a child with
severe disability were often described as ‘constant’, equivalent to full-time work, ‘24/7’
and relentless.

‘No-one else has to continually change nappies, turn, them, feed them, for so many years. It’s exhausting, sheer exhaustion.’

… … …

‘It’s so huge. Every single part of my life is impacted by my daughter’s disability. Even at 14 years, she is still very dependent. She has no understanding or communication. It’s like caring for a giant sized toddler with no prospect of this changing.’

The preparation and effort required to take a child outside, and the inability to leave even an older child who has severe disability on their own for a brief period of time or in the care of others, make even simple day-to-day activities such as shopping difficult or impossible.

Carers also reported negative effects on their own health and wellbeing, ranging from physical injuries caused by lifting the child to stress-related disorders.

The impact on immediate family and extended family was also highlighted, with siblings often taking on caring and household responsibilities beyond what is usually expected from children their age.

‘All in the family is involved in his care. My 17-year-old son lifts him into the shower, onto the toilet and into bed every day. His caring role started when he was nine and he learnt to suction him so I could have a shower. My older son also has to pin him down while my daughter and I change his tracheostomy once a week or hep lock his port-a-cath.’

… … …

‘[The] most difficult times are being torn between the well child and the ill child, especially as my younger child was only four when my son was diagnosed. She was minded by various friends and family, often in tears, as my husband is away with his business a few nights a week. She did not understand why I could not be there with her. My son would become angry towards us for bringing him to hospital [and] I would feel bad about having to restrain him for various procedures in order for him to obtain treatment. My daughter often was present as he would have to present to hospital at short notice. She witnessed many terrible things.’

… … …

‘Our other son has been dragged out of bed at all hours of the night when we have had to rush [our child] to hospital. He has seen things a little boy shouldn’t have to see. He has seen his mum and dad cry, panic, stressed, traumatised, fighting, etc.— all these things are a result of her illness.’

There was a sense from carers of a lack of a ‘normal’ family life. It is the view of the Taskforce that the significance of the care load experienced by carers in these circumstances is a major barrier to substantial workforce participation and is therefore directly linked to the need for income support. This issue is discussed further in Chapter 4 and has informed, in part, the Taskforce’s recommendations regarding the assessment process for Carer Payment (child).

Carer recognition

The critical role of carers is now being recognised in Australia by both the Australian Government and state and territory governments.

In Western Australia, the Carers Recognition Act 2004 recognises the role of carers, contains a Carers Charter that directs how carers are to be treated, and requires the health and disability sectors to include carers in decision-making processes at both macro and micro levels of service provision.

Carers recognition legislation has also been introduced in the Northern Territory and South Australia that aims to acknowledge carers and their role in the community. In South Australia, the purpose of the Carers Recognition Act 2005 is twofold:

  • to recognise and support carers and their role in the community; and
  • for organisations to report on action taken to reflect the Carers Charter in the provision of services relevant to carers and the people they care for.

The Carers Charter in South Australia sets out the rights of carers.

The Australian Capital Territory introduced the Carers Recognition Legislation Amendment Bill 2006 to give public recognition to the role of and contribution made by unpaid, informal carers and to ensure that carers are regarded as partners with government.

Queensland and Victoria have developed carer recognition policies and action plans that establish a framework for government departments and agencies to identify and recognise the important role of carers—not just for those they provide care to but also for the community.

NSW Health has introduced a Carers Action Plan 2007–12 that outlines a whole-ofgovernment commitment to recognising and supporting carers. The plan includes strategies to increase the respect and recognition of carers, reach out to family members who may not see themselves as carers, improve services to carers and the people they care for, encourage agencies to view carers as partners in care, and support carers to combine work and caring.

While it is not within the terms of reference of the review, the Taskforce recommends the Australian Government consider formally recognising the role of carers—for example, through carer recognition legislation and a national action plan for carers. This would demonstrate acknowledgment at the federal level of the contribution made by Australian carers.

Recommendation 1

The Taskforce recommends that the Australian Government recognise the role of carers and introduce carer recognition legislation and a national action plan for carers.


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Carer population characteristics

In 2003, of the estimated 2.6 million carers who provided some assistance to those who needed help because of disability or age, about 742,500 were primary carers (19 per cent of all carers). Primary carers are people who provide the majority of the informal help needed by a person with a disability. Of these, around 57,800 were primary carers of children with disabilities (12 per cent of all carers), including approximately 54,600 who were the primary carers of children with a severe or profound core activity limitation.7

The majority of primary carers of children with a severe or profound core activity limitation were mothers (91 per cent).8

Around 60 per cent of primary carers (32,200) of children aged 0–14 years with a severe or profound core activity limitation provided more than 40 hours of care per week. A further 23 per cent provided 20 to 40 hours of care per week.9

Almost half (48 per cent) of primary carers of children with a severe or profound core limitation reported needing more support. Of these primary carers, 40 per cent reported more respite care as their greatest need and 34 per cent reported financial assistance as their greatest need.10

Most primary carers of children with a severe or profound core activity limitation reported that their relationship with the child was either unaffected (44 per cent) or was closer (37 per cent) as a result of their caring role. However, around 36 per cent of carers reported that their relationship with their spouse was strained or they lacked time together alone. Around 39 per cent reported that they had less time to spend with other family members. One-quarter (25 per cent) reported that they had lost or were losing touch with friends.11

At June 2007, there were around 3,570 Carer Payment (child) recipients, accounting for approximately 3.1 per cent of all Carer Payment recipients (116,600 child and adult payment recipients). The Taskforce notes that this is a very small proportion of the total.

There were 109,100 Carer Allowance (child) recipients, accounting for 28 per cent of all Carer Allowance recipients (393,300 recipients). Carer Payment (child) recipients were caring for 3,860 children, while Carer Allowance (child) recipients cared for 129,300 children. Around 90 per cent of Carer Payment (child) recipients (3,234 people) also received Carer Allowance (child).

A short description of the carer and care receiver populations is included at Appendix D, and a separate statistical summary report has been produced as part of the review.

Impact of demographic change

The National Centre for Social and Economic Modelling in 2004 estimated that by 2031 the number of people needing care will be over one million while the number of available carers will be under 400,000.12 As the large and relatively wealthy cohort of baby boomers grows older, the demand for services is likely to increase significantly. Carers’ needs will also change as they become older and experience more age-related disability themselves. This effect is most evident in the ageing of the population but carers of children with disability are a small but important group in this wider informal caring population.

Social policy settings that promote higher levels of female labour force participation are therefore in tension with promoting increased carer supply, as their combined effect is to increase the opportunity costs of undertaking informal care. This has implications for the supply of informal carers available to support current and future formal care systems and, consequently, the demand for formal care services by people of all ages with a disability or severe medical condition is projected to increase.

This projection has significant implications for younger, working age groups (particularly women) who will potentially fall into the ‘sandwich generation’, with caring responsibilities for both a child with disability or severe medical conditions and an older parent or relative.

The failure of formal care services to maintain supply consistent with demand will have a significant social, emotional and financial impact upon informal carers and society, as carers’ own health and wellbeing is reduced.

The Taskforce is of the view that government policy relating to support for informal carers, including those caring for children with disability or severe medical conditions, needs to take into account the changing demographics and projected escalating demands for care. Government policies will be important in better aligning the supply of carers and the demand for care services.

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Financial support for carers

In 2003, the ABS reported that the principal source of income for all primary carers was a government pension or allowance (55 per cent). For primary carers of children with a severe or profound core activity limitation, the proportion was much higher at 67 per cent. Around 25 per cent of primary carers of children with a severe or profound core activity limitation reported wages or salary as their principal source of income.

In contrast, 51 per cent of people without caring responsibilities reported wages or salary as their principal source of income and 24 per cent reported a government pension or allowance. The median gross personal weekly income for primary carers was $237 in 2003, compared to $407 for people without caring responsibilities.13

Carer Payment and Carer Allowance

FaCSIA has policy responsibility for carer payments. Centrelink delivers and administers the payments.

There are two major forms of financial assistance for carers: Carer Payment and Carer Allowance. Each of these has a child stream and an adult stream. Carer Payment (child) and Carer Allowance (child) are paid to carers of children aged under 16 years, and Carer Payment (adult) and Carer Allowance (adult) are paid to carers of people aged 16 years and over. It is clear from evidence given to the Taskforce that the differences between these payment types generally are not well understood in the community.

Carer Payment is an income support payment for people who, because of the demands of their caring role, are unable to support themselves through substantial workforce participation. Carer Payment is subject to an income and assets test and is paid at the same rate as other social security pensions, which is currently $537.70 per fortnight (single) or $449.10 per fortnight each (couple), including the pension supplement. A Pharmaceutical Allowance of up to $5.80 per fortnight for singles and couples is available in addition to the pension payment.

Recipients of the payment also receive a Pensioner Concession Card, which entitles them to concessions on Pharmaceutical Benefits Scheme prescription medicines and certain

Medicare services, as well as a range of state and local government services such as transport and utilities. They may also be eligible for additional Centrelink payments such as the Education Entry Payment, Employment Entry Payment, Rent Assistance, Remote Area Allowance, Telephone Allowance or Pensioner Education Supplement. In certain circumstances a $500 advance payment of Carer Payment may be made.

Carer Allowance is an income supplement that is paid in recognition of the caring role. It is not taxable or income and assets tested, can be paid in addition to a social security income support payment, and is currently paid at the rate of $98.50 per fortnight. Carers can receive either Carer Allowance and a Health Care Card in the care receiver’s name, or just a Health Care Card alone in the care receiver’s name. A Health Care Card entitles the cardholder to reduced-cost medicines under the Pharmaceutical Benefits Scheme and to a range of additional subsidies, including health, transport and educational concessions, which vary from state to state.

Carer Payment and Carer Allowance are not intended to compensate carers for providing care, nor are they designed to cover the costs of caring for someone with disability.

Other income support

If families who have children with severe disability or medical conditions do not qualify for Carer Payment (child), which is paid at pension rates, there is no targeted assistance available for them other than Carer Allowance (child), which may be paid to people regardless of whether they are receiving income support or the interim Carer Adjustment Payment, which is described in more detail below.

Families may qualify for other payments; however, there are significant differences between pensions (for example, Carer Payment or the Age Pension) and allowances (such as Newstart Allowance and Parenting Payment—see below) paid through Centrelink. Generally, pensions are paid at a higher rate than allowances, and there are differences in the application of the income and assets tests. Different indexation rates also apply to both types of payment: pensions are indexed to Consumer Price Index (CPI) and Male Total Average Weekly Earnings, and allowances are indexed to the CPI only.

Participation requirements also apply to allowances such as Newstart. While Newstart and Parenting Payment are not targeted specifically to parents of children with severe disability, some special arrangements may apply for parents in this situation. For example, Newstart has a specific participation exemption for principal carer parents caring for a child with a physical, intellectual or psychiatric disability or illness. Chapter 4 contains additional information on participation requirements.

Parenting Payment is an income support payment for parents with a child aged under six (if partnered), aged under eight (if single), or aged under 16 (if in receipt of Parenting Payment prior to 2006). Parenting Payment can be paid to one member of a couple only. When the youngest qualifying child is aged six or over, the person must enter into an Activity Agreement and participate in a broad range of activities, such as employment or training.

Newstart Allowance is an income and assets tested income support payment payable if the person is unemployed, aged 21 or over but under Age Pension age and, unless exempted, able to participate in Jobsearch or other approved activities.

Other payments for carers

Since 2004, the government has paid annual, one-off carer bonuses of $1,000 to Carer Payment recipients and $600 to recipients of Carer Allowance for each eligible care receiver. In 2007, the Australian Government announced a new annual payment, the Child Disability Assistance Payment, of $1,000 for Carer Allowance (child) recipients to help them purchase assistance for their child, such as equipment, therapy or respite.

The Carer Adjustment Payment (CAP) is an interim ex gratia payment scheme that is being offered while the review of Carer Payment (child) is conducted. The CAP is a one-off, nontaxable payment available to families who are in exceptional circumstances. The amount payable to a family will depend on each family’s individual circumstances, with the maximum amount of $10,000 for each child in a single catastrophic event.

The CAP is intended to assist families to adjust following a catastrophic event where a child aged up to six years of age is diagnosed with a severe illness or medical condition, or has a major disability due to injury from an accident. Examples of catastrophic events may include (but are not limited to) a diagnosis of a serious or severe illness or medical condition such as childhood cancer or childhood stroke, or an event such as a car accident, fire, fall, poisoning, near drowning, or other type of accident.

The CAP is discussed further in chapters 4 and 7.

History and purpose of Carer Payment

In the mid-1980s the Australian Government introduced the first payments for carers of people on age or invalid pensions. Over time, the eligibility criteria and types of payments available have expanded. Carer Payment eligibility was extended to cover carers of children under 16 years of age with a profound disability on 1 July 1998. Previously, Carer Payment had only been available to carers of people aged 16 and over.

In 2006, Carer Payment (child) was expanded to include carers of children aged six to 16 years with severe intellectual, psychiatric and behavioural disabilities. A history of the government’s financial assistance for carers appears at Appendix E.

The Taskforce was aware that Carer Payment (child) was originally intended to be confined to the most disadvantaged carers. Those carers were identified as being involved in the highest levels of care, which precluded them from substantial workforce participation, and where the alternative to that care was the institutionalisation of the care receiver. Despite this, the Taskforce noted that the history of the payment and related government assistance has been one of progressive expansion.

The Taskforce has proceeded on the premise that the objective of Carer Payment (child) is to facilitate the provision—usually by parents and other close family members—of the attention and care required by children diagnosed as having severe disability or medical conditions.

For a carer to qualify, the caring load involved must be constant and significantly more than that required for a child of comparable age who does not suffer from the disability and/or condition and, further, it must be the caring role that prevents the carer from supporting himself or herself through substantial workforce participation. The payment is not designed to compensate the carer or the care receiver for the disability/medical condition nor is it intended to assist with the costs of treatment or caring.

The consultation and review process revealed that there is significant uncertainty and confusion about the difference between Carer Payment (child) and Carer Allowance (child). That confusion often relates to a lack of understanding as to the underlying purpose Carer Allowance (child) is intended to fulfil.

The generalised proposition that it is intended to recognise the value of the caring role is difficult for many carers (and others) to understand given the very real, often overwhelming, demands of their caring role.

Recommendation 2

The Taskforce recommends that the government ensure clear and readily accessible information is available about the Carer Payment (child) and Carer Allowance (child) and their purpose, and consider revising the current payment names to more accurately differentiate the intent and nature of each payment.

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Carer Payment (child)

Eligibility

Carer Payment (child) is an income support payment for people who, because of their caring responsibilities for a child under 16 years of age with severe disability or medical conditions, are unable to support themselves through substantial workforce participation. To be eligible for Carer Payment (child), stringent criteria must be met, as defined in the Social Security Act 1991 (the Act).

Carer Payment is subject to income and assets tests and is paid at the same rate as other social security pensions, and as mentioned above has both an adult stream and a child stream.

The child for whom the care is provided must require continuous personal care for six months or more because of a disability or medical condition—unless the child is in the advanced phase of a terminal condition—and meet the legislative definition of ‘profoundly disabled child’. A child can be determined to be a ‘profoundly disabled child’ if the child satisfies the medical, behavioural or terminal condition criteria set out in the Act. In broad terms, the care receiver must meet:

  • terminal condition criteria that relate to a life expectancy not substantially greater than 12 months, or
  • three out of seven specific medical and physical circumstances, often referred to as the ‘pick-a-box’ criteria; or
  • at least one of three conditions to do with dangerous, deviant, aggressive or violent behaviour if the care receiver is between the ages of six and 16 years and has a severe intellectual, psychiatric or behavioural disability or medical condition.

Part of the eligibility criteria for the payment is outlined in subsections (2), (2AA) and 2(A)
of section 197 of the Act (see Appendix F; a table that outlines the criteria is also attached at
Appendix G for information).

A carer may also qualify for Carer Payment (child) if they provide care to two or more children
with severe disability or medical conditions whose combined care needs are the equivalent of
a ‘profoundly disabled child’.

Current eligibility is directed to children with severe disability who require ‘continuous
personal care’. In practical terms, the Guide to Social Security Law has defined this as where:

  • ongoing care is required every day because of a child’s disability;
  • the amount of care is at least equivalent to a working day, every day; and
  • the carer is not able to leave the child unattended for any significant period.14

The care must be required in order to maintain comfort, sustain life or attend to a bodily function that the child cannot manage himself or herself. The care may be active, supervisory or monitoring. ‘Continuous’ does not mean that the carer must spend every minute of the day providing personal care; however, the amount of time spent providing care because of the disability must be at least equivalent to a working day, every day, seven days a week.

Care may be provided in long blocks, short regular intervals or a combination of periods, but it must be the case that the carer is not able to leave the child unattended for any significant period. Carers may, however, take temporary breaks from caring of up to 63 days in a calendar year. Further information about this temporary cessation of care is provided in Chapter 4 and in the Guide to Social Security Law at subsection 3.6.4.40.

Two carers can qualify for Carer Payment (child) for providing care to one child if both individually meet the criteria for providing constant care. Indeed, the intent of the original Carer Payment (child) legislation was to assist families where the child’s care needs were such that often both parents were precluded from substantial workforce participation. Only a very small percentage of Carer Payment (child) care receivers have more than one carer qualified for payment. This may be due to a lack of awareness that more than one carer can qualify for Carer Payment for caring for the same child.

Most Carer Payment (child) recipients are also receiving Carer Allowance (child). Where two carers have qualified for Carer Payment (child) for providing care for one child, they are able to receive only one Carer Allowance (child) payment in respect of the child, even though they may be sharing the care load. Some carers who are aware that only one Carer Allowance (child) payment can be made may assume incorrectly that this also applies to Carer Payment (child).

The low number of multiple Carer Payment (child) recipients for one child could also be due to differing rules for different situations. For example, if a child meets the physical criteria for Carer Payment (child), and two carers are both claiming payment, it would generally be accepted that constant care is being provided by both carers since the child requires a very high level of care to maintain comfort, sustain life and attend to bodily functions. However, the Guide to Social Security Law recommends careful assessment of carers of children who meet the behavioural criteria. A social worker home visit may be necessary to ascertain whether the constant care requirement is met by both carers. This is because a child who meets the behavioural criteria may not necessarily require constant care from two or more carers.

Yet another approach is applied for Carer Payment (adult). More than one carer can qualify and receive payment in their own right for the same adult care receiver, provided they each provide constant care and the care receiver achieves a sufficiently high score on the assessment tool used to partly determine eligibility for Carer Payment (adult), known as the Adult Disability Assessment Tool.

Application process

To apply for Carer Payment (child) and/or Carer Allowance (child), the carer must complete an application form, which is available from Centrelink offices and on the Internet.

For Carer Payment (child), a form must also be completed by the child’s treating doctor (the medical report form) to assess whether the child meets the definition of a ‘profoundly disabled child’ as specified in the Act.

If the carer wishes to claim Carer Allowance (child) as well, a separate form must be filled out either by the same doctor or by a treating health professional using a different assessment process, known as the Child Disability Assessment Tool and the Lists of Recognised Disabilities. This process is outlined not in the Act but in a disallowable instrument.

Circumstance and medical reviews

Centrelink currently reviews customer eligibility across all payment types, and the type of review varies according to the type of payment. For example, Newstart Allowance customers lodge fortnightly forms, those on Widow Allowance lodge forms every 12 weeks, and Carer Payment (adult) recipients are reviewed every two years. This may be a medical review or a circumstance review depending on whether the care receiver’s disability or condition is permanent and not improving and whether the care receiver’s Adult Disability Assessment Tool score is sufficiently high to exclude a medical review. Other reviews such as income and asset reviews are also conducted periodically.

Carer Payment (child) recipients are reviewed periodically, usually every two years, to determine whether the carer is still providing constant care. In most cases this is done over the phone and is a simplified process that does not involve a medical review, unless the carer advises that the child’s condition has improved. However, in cases where two or more children with disability together qualify their carer for Carer Payment, a combined two-yearly circumstance and medical review is undertaken.

If the carer is also in receipt of Carer Allowance (child), this payment will also be reviewed. Where possible, Centrelink attempts to coordinate these reviews with the Carer Payment (child) reviews. Carer Allowance (child) has medical reviews that occur within 12 months of a child reaching each new developmental milestone. These are at:

  • three years and four months (if Carer Allowance (child) was granted before the child was two years old),
  • four years and eight months,
  • seven years,
  • 10 years,
  • 13 years, and
  • 15 years and nine months.

There are no periodic reviews for children below the age of three years and four months as their condition is considered unlikely to improve significantly before they reach that age.

Children with disability or medical conditions that appear on the Carer Allowance Lists of Recognised Disabilities are subject to a simplified process of review. The reviews still occur at the developmental milestones, but new medical information is not required. These reviews check to ensure that the child is still receiving care and attention in the family home, and the review may be done over the phone.

Review and appeals of decisions

Administration of the payments is subject to the same appeals process as other social security payments; that is, a client can ask for a decision to be reconsidered by the Original Decision Maker and, if still dissatisfied with the reconsideration, the decision can then be reviewed by an Authorised Review Officer within Centrelink. If the client believes the Authorised Review Officer’s decision is incorrect, the decision can be referred to the Social
Security Appeals Tribunal and then to the Administrative Appeals Tribunal for review. The appeals process is discussed further in Chapter 5.

6 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0.

7 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0, and FaCSIA analysis of
2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

8 Australian Institute of Health and Welfare 2006, Disability Updates: Children with Disabilities, Bulletin 42.

9 Ibid.

10 Ibid.

11 Ibid.

12 National Centre for Social and Economic Modelling 2004, Who’s going to care? Informal care and an ageing population.

13 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0, and FaCSIA analysis of 2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

14 Australian Government, Guide to Social Security Law, subsection 1.1.C.340.

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Chapter 4: Challenges and Critical Roles of Carers

The Taskforce identified the challenges and critical role of carers of children with significant care needs, particularly those which go beyond the expectations of the caring role of a parent of a child who does not have a severe disability or medical condition. The personal stories offered in submissions by thousands of carers provided the Taskforce with invaluable information about carers’ day-to-day lives.

Caring for children with disability

It was quite clear to the Taskforce that the role of carers of children with severe disability or medical conditions was substantially greater than the usual parenting role. Although it is difficult to define ‘usual’ parenting, the fundamental nature of parenting is a level of care that decreases over time and is replaced by monitoring supervision and, finally, independence as the child becomes more competent. Parents who are also carers may not have the same decrease in their caring and supervisory roles, which are coupled with increases in personal responsibility for the judgments and decisions about the care, disability or medical condition.

Parent–child relationships in the absence of severe disability or medical conditions generally follow a fairly standard trajectory. Parents provide full assistance to their newborn children, whose needs are all-consuming and dominate the parents’ lives and relationships in the early stages. As the child grows, achieves developmental milestones and matures emotionally and intellectually, his or her dependence on physical assistance and close parental supervision reduces while the need for social, emotional and other higher level support becomes more apparent. The child forms social relationships with peers and significant others, and so the child’s social and emotional needs are met from a range of sources. Parents, too, continue to access social networks and pursue personal and work interests for their own benefit. Child development consistent with norms lays the foundation for future independence and a maturing parent–child relationship. Across the life course, parents anticipate the eventual independence of their child and his or her separation from the immediate family environment.

The Taskforce heard from many parents caring for children with severe disability or medical conditions who do not have this experience or these expectations. In many cases, a severe disability or medical condition prevents the child from reaching the significant developmental milestones necessary to achieve independence at the same age as other children. The child may also be unable to establish social relationships with peers and significant others.

Many parents during the consultation process described their experiences and emotional and psychological reactions to their child’s need for 24-hour, seven-day-a-week care. Concern and fear about the future, the impact of chronic conditions and the ongoing grief and loss often experienced in these circumstances, and the restricted life choices available to parents whose care load does not diminish over time, are in stark contrast to the experiences of most parents.

‘You are constantly on duty 24 hours a day, seven days a week. This role will continue until the child dies, or if I predecease my daughter. Most intensive parenting duties decline as the child grows and matures, [but] this is not the case for a child with a severe disability. I will have to be on call 24/7 until the day I die.’

… … …

‘Many physical conditions have life-threatening consequences if they are not monitored correctly. The carer has to be well versed in techniques to keep the child stable and what to do in an emergency. They are the ones who convey this information to the teachers and other outside carers whilst at the same time being “on call” themselves.’

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Challenges for carers

Impact of the caring role

Any review of Carer Payment (child) must be seen against the whole picture of caring, of which income support is just a part.

Taking on a caring role has been shown to have many consequences for carers and their families. Maintaining the health, and in some instances the life, of the child is much more than a full-time job. While some families and carers find the role rewarding and satisfying and report strengthened relationships, many carers experience financial hardship, reduced employment and education prospects, lower levels of health and wellbeing, chronic grief or anger, and limited opportunities to build or maintain social networks and participate in community life.

The Australian Institute of Health and Welfare (AIHW) in its report Carers in Australia15 found that many factors influence the caring experience for carers, including the personal circumstances and characteristics of the carer and care receiver, the nature and strength of the relationship, living arrangements and the level of support available from formal services and social networks.

It is clear from the evidence that primary carers experience more long-term health problems and higher rates of disability than the general population. The AIHW reported that ‘the physical and psychological demands of the caring role itself can lead to adverse health outcomes for carers’.16 Caring can increase levels of fatigue, worry or depression, and impact adversely on wellbeing.17 The Australian Bureau of Statistics (ABS) also reported that‘primary carers had a lower labour force participation rate (39 per cent) than people who were not carers (68 per cent)’.18

In their submissions to the Taskforce, many carers commented on the demands of the caring role and the need to be available at all times. It is estimated that nearly 60 per cent of carers of children with a severe or profound disability provided more than 40 hours of care per week, and another 22 per cent provided 20 to 40 hours of care.19 It is clear that carers of children with severe disability have a role that is far in excess of usual parenting responsibilities.

The financial, emotional and physical hardships; always being ‘on call’ even when a child becomes school-aged and attends an educational facility; the time pressures associated with caring; and responding to education staff demands for care-related assistance in school life combine to place intense pressure on carers.

Siblings of children with severe disability may also require time to adjust to conflicting emotional responses, and may experience feelings of grief and loss; anxiety for themselves, their sibling and other family members; and a sense of responsibility for their sibling beyond that felt by their peers.20

‘You feel stripped of your parenting right and role and thrust into a “carer” role. I know I never feel like a mum when I am with my son, always a carer. I really miss that feeling with him.’

… … …

‘As my child gets older, the difference between him and a normal child becomes greater so that I begin to feel more isolated. When he was younger we often had picnics and walks with other families with children of a similar age. Now those other families’ children are very independent and their parents are able to live their own lives. We are still going to the park, playing on the swings and feeding the ducks.’

Social isolation emerged in the submission process as a major issue for carers, their children with disability and their families. Carers reported that social isolation contributed to their levels of depression and stress, and affected the socialisation of their children. Even when they attend school, many children with severe disability and/or their siblings experience bullying, social isolation and rejection.

‘Our daughter has been teased and intimidated by other students because of her brother. A group of 8 to 10 boys encircled her in the school yard and told her that they were going to get her brother and hold him up while someone beat him, they would all have a turn of beating him, if he fell they would hold him up again and keep beating him until he was bleeding and nearly dead. All because he had a severe panic attack, and had to be physically restrained by staff. She felt threatened and frightened.’

… … …

‘I am only friends with other carers now due to lack of empathy and the stigma attached to being a mother of a child with a disability. I am told that now he is 18 he can look after himself. Relationships are on permanent hold due to lack of time and feeling so exhausted that the mere thought of meeting someone new is now beyond what I could cope with.’

There is some evidence that rates of depression for carers are highest in the first 12 months of the caring role and that the impact on the family’s wellbeing is most severe in this early period. This seems to indicate that intervening early for families of children with severe disability may help to ameliorate some of the effects of taking on a caring role.

Costs of caring and costs of disability

In 2005, Access Economics21 researched the economic value of informal care for people with disability or chronic illness and the frail aged. It used two models to estimate the monetary value of informal care. The first model examined the cost of replacing all informal care with formal care, and the cost was estimated at $30.5 billion annually. The second model—an opportunity costs model looking at income forgone by carers—estimated that the time devoted to informal care cost the economy $4.9 billion in diverted production.

In 2005, AMP and the National Centre for Social and Economic Modelling (NATSEM) conducted a study22 on the costs of caring in Australia. The study also concluded that caring impacts on the ability of carers to participate in the labour market and to therefore supplement their incomes. Based on ABS data, NATSEM found that carers earn less, have lower living standards than non-carers, and may feel income loss throughout the life course, with a particular impact on retirement incomes due to a lack of superannuation savings. NATSEM also found that around one-third of primary carers are in households with incomes equivalent to the poorest one-fifth of households nationally.

The costs of caring was raised in a number of submissions to the Taskforce. Parents reported struggling with the cost of raising children with disability, noting that additional costs are incurred due to the need for medication, medical supplies and continence aids, appointments, therapists, specialist behaviour learning programs, equipment such as wheelchairs and hearing aids, home and equipment modifications, additional travel and transport, and specialised clothing.

The high cost of equipment, in particular, impacts on family budgets, with one carer noting that equipment available in Australia can be two to three times the price of the same equipment in the United States. A number of studies have also attempted to estimate the costs of disability, and most find that these costs vary considerably depending on the type of disability and individual circumstances.23

Further estimates found that the costs of disability correspond to 29 per cent of equivalised household disposable income, but when a more extensive disability variable was used the estimate increased to just over 37 per cent of disposable income. As a point of comparison, the Organisation for Economic Co-operation and Development estimates that the cost of a second adult in a household corresponds to around 33 per cent of household income, while the cost of the first child for a couple is around 11 per cent of income.24 These estimates do not take into account differences in costs that may be incurred as a result of more severe disability.

‘Last year in particular was a very costly year for our family. We made an investment to protect my back from lifting and had our ‘people mover’ converted to carry Nathan in the back in his wheelchair. This conversion and addition of a ramp to the car cost the grand sum of $23,000. The car was $30,000. We also had to finance almost $2,000 gap on the purchase of a wheelchair and an additional $3,000 for other medical and equipment expenses.’

… … …

‘As a separated mother, I have been living off the sale of my house for the past 18 months. I can’t see how I will ever be able to get a loan for a house for this child to live in. This money makes the difference between paying the rent and not paying the rent. I am fearful that we will end up living in a tent.’

… … …

‘I’m a person who pays their bills first and then lives on what’s left over. For a long time all I had left for groceries was $5. I’d buy a loaf of bread, small bag of frozen peas, two onions and a bag of pasta. The next week I would buy the same, but I’d have rice instead. That’s what I lived on. For Christmas lunch and Christmas dinner, Boxing Day lunch and dinner I had one sandwich with a slice of ham and some chutney someone had given me for a Christmas present. … To pay an electricity bill I had to sell the first ring a boy ever gave me. I got $10 for it. I felt really sad that day.’

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Because Carer Payment (child) is an income support payment, it makes no provision for the costs of care or the costs of disability. The payment does, however, qualify the carer for a number of other benefits and concessions, including medical and pharmaceutical benefits.

For recipients of Carer Allowance (child), the new Child Disability Assistance Payment provides a family caring for a child with disability under the age of 16 with an annual payment of $1,000 to help them purchase assistance for their child, such as respite, therapy or equipment. The first payment was made in October 2007, and the payment will be made annually from July 2008.

The Taskforce was not asked to consider or comment on the quantum of the Carer Payment (child) payment or on the application of the income and asset tests. However, the latter was raised specifically as an issue in the consultation processes to an extent that warrants some comment.

It was argued that the application of the standard means tests in relation to Carer Payment (child) is unfair in that it takes no account of the essential care-related outgoings involved in providing for a child’s care. The Taskforce recognises the force of the argument but is not convinced that a modified means test is the appropriate way to recognise these costs. It does, however, consider that the costs of providing care should be recognised.

Part of the problem in considering how this might be done is the difficulty in identifying and quantifying the assistance already variously available across different programs provided by federal, state, territory and local governments. However, on the evidence presented to the Taskforce, that assistance is neither sufficient nor appropriate to the needs of carers.

The additional costs of care could be recognised in a number of ways, including through concession cards, the tax system or the health care system. The Taskforce notes that the Taskforce on Care Costs25 has recommended a number of options for dealing with care costs for children, people with disability and the frail aged.

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Better targeting concession cards to the needs of specific client groups—for example, providing subsidies for respite for carers through the use of a concession card—may assist carers to meet the costs of care or the costs of disability. It may be necessary, however, for this type of work to proceed as a system-wide exercise. The Taskforce has not undertaken a thorough analysis of whether the subsidies provided through the concession card system are suited to the needs of carers, and it acknowledges that further work could be done in this area.

The Taskforce also notes that there is a policy tension for government around the costs of care. On the one hand, the value of informal care to the economy is indisputable, as is the need for an increasing number of carers as the population ages; on the other hand, encouraging carers to enter or re-enter the labour market provides benefits not just for the carer but for the economy as a whole through improved productivity. In the Taskforce’s view, carers who wish to continue in their caring role and carers who want to participate in education, training or employment should both be supported by government. The solution to this dilemma may be to provide sufficient options, choice and flexibility for carers so they are in a position to decide on the best solution for them, according to their individual circumstances.

Recommendation 3

The Taskforce recommends that the government review the overall costs of caring and costs of disability incurred by carers and children with severe disability or medical conditions in light of the adequacy and availability of current payments and other financial support for carers.

Workforce participation

Many carers report positive benefits from participating in employment, but as mentioned above carers tend to have a lower labour force participation rate (39 per cent) than non-carers (68 per cent).26 In addition to financial benefits, research has demonstrated that workforce participation also has psychological and social benefits.27

Paid employment increases financial security for individuals and their families. Parents reported feeling more competent if they were in work and also reported positive effects on their children. Research has shown that children are generally better off if their parents are less reliant on income support and participate in the paid workforce. People who depend for long periods on income support rather than paid work face increased risks of financial hardship and social exclusion.

Research conducted by Anglicare’s Social Action and Research Centre found that families in Tasmania caring for children with disability experienced difficulties in accessing or sustaining employment and in coping with the financial impact of their caring responsibilities. Around three-quarters of the families surveyed had sought financial help from family and friends and had difficulties in paying household bills on time.28

The ABS publication Australian Social Trends 2005 analysed the labour force trends of primary carers and found that there were 179,000 employed carers and 186,000 primary carers under the age of 65 who were not in the labour force or who were unemployed. Of this group, 36 per cent (66,800 people) wanted paid work while continuing in their caring role, with 80 per cent preferring part-time work.

For employed carers, the caring role can have a significant impact on work:

  • 23 per cent reduced their standard work hours after commencing in their caring role,
  • 11 per cent had time off at least once a week due to caring,
  • 21 per cent had time off less frequently, and
  • 10 per cent left work for at least three consecutive months due to their caring role.

For primary carers not in the labour force, around 90,500 had been in the labour force prior to commencing their caring role and around half of those had left work to commence or increase caring.29

The ABS found in 2003 that the majority (61 per cent) of all primary carers were not in the labour force. The labour force participation characteristics of all primary carers and primary carers of children with a severe or profound core activity limitation were similar. While around 61 per cent were not in the labour force, 38 per cent were employed, and 1 per cent were unemployed.30

A lower proportion of primary carers of children with a severe or profound core activity limitation (11 per cent) were employed full-time compared with all primary carers (17 per cent), and conversely a higher proportion were employed part-time (27 per cent compared to 21 per cent).31 The majority (62 per cent) of mothers who were primary carers of children with a severe or profound core activity restriction were not in the labour force,
compared with 36 per cent of mothers of children the same age without a disability.32

Carers in receipt of Carer Payment are able to participate in employment, education or training for up to 25 hours per week (including travel time) and still maintain their eligibility for payment. Submissions to the Taskforce indicated, however, that there are significant barriers for carers who wish to participate in the workforce. The high level of care required by the child with disability, the amount of external care the carer is able to access, and the flexibility of the employer in allowing time off, especially at short notice, are sometimes seen as insurmountable obstacles for carers who want to work.

‘Many carers reported difficulties with accessing child care, vacation care and outside school hours care, particularly for children with high care needs. Even when children are attending school, carers are frequently asked to come and collect the child due to medical or behavioural problems that the school is not able to deal with, and carers report that some schools will only take children with high care needs if the carer attends full-time. For single parents, the possibilities for work may be further limited as they may have little or no family support or back-up. These issues often preclude carers from workforce participation.’

… … …

‘I don’t believe that working is an option at this point in time. I would love to work and had even planned to return to study but that is something I have had to sacrifice as [my daughter’s] needs are so great. With the expenses incurred because of her disability I do need to work, but because of her high complex needs, I cannot. She also has seizures and her medication has made her quite irritable and she has become distressed very easily. To find an employer who is understanding of our responsibilities as a parent is hard. I would not be a productive employee if I was continually taking time off work whenever she had a seizure, became distressed or had to attend medical appointments.’

… … …

‘Because I have been able to access Carer Payment, this has allowed me to care for my son at home and also meet the basic needs of my family without the added pressure of being an unreliable employee, as my son’s health varies from day to day. Some days he attends the special school [and] other days he is unwell so it is near impossible to hold down a job of any description, as employers can only be so flexible about the time you have off.’

… … …

‘A major challenge has always been accessing appropriate child care and services. … It’s most difficult to access school holiday programs. For example, this recent school holidays I booked three places for my three children, to be advised that while my two non-disabled children could attend there were no places available for my child with a disability. I had only requested three days.’

In the view of the Taskforce, there is a strong case for special assistance to be provided to carers who choose to enter or re-enter the workforce.

The 2003 ABS survey asked primary carers who were unemployed or not in the labour force whether they would like to be employed while caring. Just over half (51 per cent) of the primary carers of children with a severe or profound disability reported that they would like to work.33

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Of those who expressed a preference to work, almost half (47 per cent) of primary carers of children with a severe or profound disability reported that no alternative care arrangement was their main perceived barrier to re-entering the workforce while caring. A further 23 per cent reported that difficulty in arranging working hours was their main barrier. Similarly, 32 per cent of all primary carers reported no alternative care arrangement as their main barrier, followed by other difficulties (see Table 1).

Table 1: Main perceived barrier to re-entering workforce while caring(a)
Perceived barrier to re-entering
workforce while caring
Primary carers of children with
a severe or profound disability
All primary carers
(’000) % (’000) %
No alternative care arrangement available 8.3 47.0 22.0 32.0
Disruption to main recipient of care 1.6 9.3 7.7 11.2
Difficulty in arranging working hours 4.0 23.2 10.9 15.9
Loss of skills from being out of workforce 0.4 2.1 3.0 4.4
Age 0.3 1.7 9.6 13.9
Other difficulty 2.8 16.3 14.5 21.1
No difficulties 1.1 1.6
Total(a) 17.4 100.0 68.8 100.0

(a) Population of primary carers living in households who are unemployed or not in the labour force and are not retired and would like
to work while caring for main recipient of care.
Source: FaCSIA analysis of 2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

Carers seeking employment are able to access the Job Network in the same way as other job seekers, but they may not be assessed as requiring intensive or specialist assistance because of their caring role alone.

There is also no specialist assistance available for employers to encourage them to consider the supports employed carers may need, such as flexible working arrangements, opportunities to work from home, access to training and development opportunities, reduced pay in return for extra paid leave, or access to carers leave.

The recent Taskforce on Care Costs report found that federal antidiscrimination legislation may not provide sufficient protection for employees with caring responsibilities. The report notes:

Recent initiatives in the United Kingdom, including the introduction of legislation which provides employees with a ‘right to request’ and employers with a duty not to ‘unreasonably refuse’ such a request, provide Australia with a best practice model for change.34

Recommendation 4

To support participation in the workforce by carers of children with severe disability, the Taskforce recommends that the government:

  • examine options to increase the availability of suitable child care, including before and after school and vacation care, for children with high care needs;
  • improve access for Carer Payment recipients to the full range of Job Network assistance, including intensive or specialist support; and
  • examine ways to assist employers to provide employment

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Multiple care receivers

The restrictive nature of the current eligibility criteria for Carer Payment (child) outlined in section 198 of the Act limits access to the payment to carers who are providing constant care for six months or more to a child with profound or severe disability, or to two or more children with disability whose care, when combined, equals the level of care required by a single ‘profoundly disabled child’ (see Appendix F for the definition of ‘profoundly disabled child’).Around 5 per cent of Carer Payment (child) recipients provide care to two or more children.

The Guide to Social Security Law defines a ‘carer’ in the Carer Payment context as follows:

For the purposes of Carer Payment (CP) and Carer Allowance (CA), a carer is a person who provides constant care (CP), or care and attention on a daily basis (CA), for a child or an adult with a disability or severe medical condition ...

Changing demographics, the increasing incidence of disability and the decreasing availability of carers indicate that in the future more carers are likely to be providing care for both a child and an adult, or two adults, with disability or severe medical condition. This care is also more likely to be provided on a short-term or episodic basis. Shared care arrangements are also becoming more prevalent as a result of changes to the Family Law Act 1975.

Carers with two or more children with disability, or with other caring responsibilities such as a spouse or parent with disability, may receive Carer Allowance for each care receiver35 but these additional care responsibilities are not taken into consideration in assessing eligibility for Carer Payment. It seems reasonable to expect that, if the additional care load of two children with disability is recognised for payment eligibility, the additional care load from one child and one adult with disability, or two adults with disability, would also be recognised.

The family context in which the care is provided impacts on the carer’s ability to provide care, and equal recognition of the care load resulting from a combination of caring responsibilities, whether child or adult, is in the Taskforce’s opinion a matter for serious consideration by government.36

In the submissions to the Taskforce, it was evident that there is a lack of clarity around the assessment of claims for Carer Payment (child) where there are two or more children with disability whose combined care needs would make the carer eligible for payment. Section 198(8) of the Act requires that in such cases the children must require a level of care that is at least equivalent to the level of care required by a ‘profoundly disabled child’.

Significantly, the care needs of two children cannot be combined to satisfy the behavioural criteria.

The Act is very specific about the seven physical criteria that would qualify one child as‘profoundly disabled’ for the purposes of Carer Payment (child). However, the determination of equivalence of level of care under section 198(8) is quite discretionary and is not supported with any legislative criteria to ascertain how two or more children’s combined care needs are to be assessed to determine whether they equate to the needs of a ‘profoundly disabled child’.

The Guide to Social Security Law attempts to provide a method for making such a determination by referring to the seven physical criteria for one ‘profoundly disabled child’. The Guide to Social Security Law states that, between the children, at least three of the seven possible criteria regarding physical care must be met, noting that if both or all children require personal care on two or more occasions between 10 pm and 6 am each day, this may only be counted as one ‘tick’.

On many occasions, however, decisions to reject a Carer Payment (child) claim based on this approach have been overturned by the Social Security Appeals Tribunal or the Administrative Appeals Tribunal—that is, the tribunals have applied the discretionary nature of section 198(8) to grant payment to carers of two or more children with disability. Tribunals have commented that the current policy is not the preferable method to assess the equivalence of level of care because it does not allow for any evaluation of the particular circumstances of the individual children and the combined effect of their multiple disabilities on the carer.

The Act has very specific criteria to assess a single child, offers total discretion over decisions where the care needs of multiple children are physical, and does not allow recognition of the care load for carers of multiple children with behavioural disabilities. Unless one of the children with behavioural disability is dangerous, violent or sexually deviant, the carer of multiple children with behavioural disabilities will not qualify for Carer Payment (child) under section 198(8).

Furthermore, a carer caring for more than one adult can qualify for payment in respect of only one of them. The combined care requirements of more than one adult cannot currently qualify a person for Carer Payment (adult).

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Recommendation 5

The Taskforce recommends that a provision be made to cater for situations where multiple care responsibilities for people of any age with disability are equal to the care required by a single child with profound disability, as currently defined in legislation (which will require amendments to section 198 of the Social Security Act 1991).

Recommendation 6

The Taskforce recommends that the application process for those claiming Carer Payment (child) on the basis of two or more children with disability be altered as soon as possible to clarify the requirements.

Short-term and episodic care

For a carer to be eligible for Carer Payment (child), he or she must provide constant care to at least one child who needs continuous personal care for six months or more, unless the condition is terminal.37 Many children with disability or severe medical conditions may require care for a time-limited period of less than six months or on an episodic basis. Some children may have a short-term condition—for example, as a result of injury—while others may have a condition that that varies depending on treatment or the progression of the illness, such as cancer, heart disease or mental illness.

Both short-term and episodic conditions may have the effect of precluding one or both parents from working during the care period. This is particularly the case with conditions that require intense periods of care or frequent hospitalisation, sudden catastrophic events where the prognosis is not clear or mental illnesses. The care load may be intense for these short periods and may preclude carers from working; however, the current requirement for carers to provide care on a continuous or constant basis for a period of six months or more means these carers will not be eligible for Carer Payment (child).

In these situations, carers may be eligible for payments such as Newstart Allowance or Parenting Payment, but they will have to negotiate with Centrelink to obtain an exemption from the requirement to look for work or training if they have such requirements. Carers may not be aware that they are able to request an exemption from participation requirements because of their caring role. Accurate information about their options may not always be provided to carers. They may present with the view that they are not able to work for a certain period and may therefore not be directed to income support payments such as Newstart, which is available only to those who are available for and actively seeking employment.

Where one or both parents or carers are temporarily unable to work due to caring responsibilities for a child with severe disability or medical conditions, options for income support and other assistance can be limited—for example, due to means testing arrangements. The diagnosis of a serious condition, a catastrophic accident or event, or a sudden deterioration in health requiring hospitalisation are stressful and difficult times for families and carers, and this can be compounded by sudden loss of income and financial distress.

Through the consultation process this limited access to assistance emerged as one of the most intractable problems. When care is demanded, carers are engaged full time and so are unable during that period to support themselves through substantial workforce participation. However, because the care is not continuous, they do not qualify for Carer Payment (child).

‘Many families are separated for long periods of time. I have spoken to parents who have been forced to resign from work (or have been sacked) as they have not been able to take time off in order to be with their hospitalised child. … Many of these families are required to travel huge distances, often forced to leave behind other children and spouses. In times such as these, it is a dreadful thing to have to leave other family members behind … it is important to keep families together. It would be wonderful if Carer Payment (child) could be extended to these families on a temporary basis—similar to the way in which sickness payment operates.’

In July 2007 the Australian Government introduced the Carer Adjustment Payment (CAP) as an interim ex gratia payment scheme while the review of Carer Payment (child) was conducted. The CAP is a one-off, non-taxable, non-means-tested payment available to families who are not on income support and who are in exceptional circumstances.

The CAP is intended to assist families to adjust following a catastrophic event where a child up to six years of age is diagnosed with a severe illness or medical condition, or has a major disability due to injury from an accident. Examples of catastrophic events include diagnosis of a serious or severe illness or medical condition such as childhood cancer or childhood stroke, or an event such as car accident, fire, fall, poisoning, near drowning, or another type of accident.

The maximum amount any family can receive is $10,000 for each child in a single catastrophic event, and the amount payable to a family depends on the family’s individual circumstances.

To be eligible for the payment, the child’s carer must qualify for Carer Allowance in respect of the child, but neither the carer nor the carer’s partner can be eligible for or in receipt of Carer Payment (child) or any other income support payment. In addition to the age and catastrophic event criteria, the child must require full-time care from the carer for a minimum of two months and the carer must demonstrate a strong need for financial assistance during the ‘adjustment’ period.

The government established an expert panel to assess and make recommendations on applications for CAP assistance. The chair of the panel, Ms Linda Webb OAM, also participated as a member of the Taskforce.

The introduction of the CAP drew attention to, among other things, the lack of provision for intermittent care needs. Such needs by their very nature may be predictable or unpredictable, frequent or infrequent and of short or long (that is, uncertain) duration.

The Taskforce reviewed the CAP and noted that it aims to help families adjust to a catastrophe. The payment does not relate to only short-term or episodic conditions and eligibility is not tied to inability to participate in the labour market. Because of these features of the CAP, the Taskforce felt it was not a suitable model.

The Taskforce recognises that there is a need to provide assistance to families in situations where a family member, particularly a child, requires continuous personal care due to a severe disability or medical condition that may be short-term, catastrophic or episodic, and the impact of this care load is such that one or both parents are not able to participate in employment and are not eligible for financial assistance from their employer for the time away from work.

The Taskforce acknowledges that the relatively small number of carers providing intermittent care and their widespread distribution across Australia militates against any special employment assistance program being provided. However, given the benefits from workforce participation and having regard to the wellbeing of the carers themselves and their productive capacity, in the view of the Taskforce it would be desirable for there to be some positive way of assisting carers generally to participate in the workforce to the greatest extent possible consonant with their caring responsibilities, and to assist and support employers in providing employment opportunities for carers that involve flexible work arrangements.

The Taskforce notes that during the submission process it was identified that temporary illness for adults is recognised through Sickness Allowance. The Taskforce considers that it would be possible to also recognise temporary high-level care requirements for children with severe disability or medical conditions in a similar fashion.

Any mechanism to provide support to carers in meeting the needs of short-term or episodic care would necessarily involve satisfying the Carer Payment (child) criteria other than the need for the care to be continuous over an extended period. The episodic nature of the condition and the likely duration of the episode would need to be verified, as would the nature and extent of the care required. It may be necessary for a minimum duration to be identified. Once these elements were established, carers could be regarded as ‘conditionally qualified’ to receive assistance as and when required. It would still be necessary for carers to establish at the time of the episode that care was related to the qualifying condition and that they were providing the level of care demanded, although the Taskforce recognises that an abridged assessment process may be necessary for short-term payments.

Assistance could take the form of income support in the nature of Carer Payment (child) for the duration of the episode, or it could be in the form of a lump sum as is currently the case with the Carer Adjustment Payment.

While it would seem entirely possible to design such schemes, the administration of them is likely to be problematic. Apart from the difficulties inherent in identifying and verifying, as appropriate, that the care receiver was experiencing an episode and in verifying the reasonably expected duration, to be effective any entitlement would have to be accessed quickly during the period of the episode.

This latter requirement suggests that, at least initially, some form of lump-sum payment— adopting a modified Carer Adjustment Payment process, but not as an act of grace—might better meet the need. Such a payment could provide assistance calculated by reference to, for example, one month’s Carer Payment (child). Where the care need is for a longer period, either the lump-sum payments could continue to be paid from month to month or the carer could be assessed against the need for regular payments of Carer Payment (child), depending on the prognosis. As mentioned above, an alternative might be to grant some form of unemployment benefit with a Job Search exemption for the expected period of the episode. However, at some point it must be questioned how long an episode must last and/or how frequently it must recur before it ceases to be an episode.

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Recommendation 7

In order to better support carers’ labour force participation, the Taskforce recommends that the government examine options for providing income support payments in situations where carers are temporarily unable to work due to the need to provide care on an episodic basis for a child with a severe disability or medical condition.

Recommendation 8

The Taskforce recommends that the government recognise the need for ready access to short-term assistance for carers of children with disability, including tailored assessment and review arrangements that allow quick access to payments in extreme circumstances.

Recommendation 9

As Carer Payment (child) does not provide additional financial assistance to families in the adjustment period following a catastrophic event that results in children requiring high levels of care, the Taskforce recommends that the government consider a form of assistance that addresses this need.

Recommendation 10

The Taskforce recommends that the government reconsider the assistance provided through Carer Allowance (child), the Carer Adjustment Payment and the Child Disability Assistance Payment with a view to establishing a rationale for the assistance being provided that can be reflected in the administration of the payment or payments and that the provision of such assistance be continued in some form and regularised.

Temporary cessation of care

Carers taking breaks from caring can access respite programs funded by FaCSIA, the Department of Health and Ageing or state and territory governments, and can continue to receive Carer Payment and/or Carer Allowance while their care receiver is in respite care. However, there are some difficulties for carers who temporarily cease their caring role.

Under the Social Security Act 1991, carers remain qualified for Carer Payment and/or Carer Allowance if, in any calendar year, they temporarily cease to provide care for no more than 63 days in total (unless the Secretary has specified another period) in either continuous or broken periods.

Centrelink, as delegate of the Secretary of the Department of Families, Community Services and Indigenous Affairs, has discretion to extend the period of temporary cessation of care in special circumstances. Generally, such circumstances would be outside carers’ control and would be consistent with their role as a carer. The care situation would be expected to resume after a defined period.

Short breaks from caring which are not overnight do not count under the temporary cessation of care provisions and do not need to be reported to Centrelink. For example, when a care receiver attends a day centre, this does not count as temporary cessation of care.

The legislation allows carers to remain qualified for Carer Payment and/or Carer Allowance if they participate in the care of the care receiver while he or she is in hospital. However, the period, or the sum of the periods, for which any carer can remain qualified while the care receiver is hospitalised is 63 days in any calendar year. This is in addition to the 63 days of respite allowed under the Act, giving a total of 126 days in a year when temporary cessation of care is allowed.

The temporary cessation of care provisions can adversely affect carers of children who have to spend significant periods of time in hospital. The current provisions are based on the assumption that when the child is hospitalised the carer is not providing care—hence the concept of ‘cessation of care’.

In the Taskforce’s view, however, this assumption is not borne out by experience. In their submissions to the Taskforce, many carers noted that the amount of care provided to children with disability in hospital is at least equal to, if not greater than, the level of care provided to them at other times.

The Taskforce considers that the potential suspension or cancellation of Carer Payment (child) payments because a child with severe disability or medical conditions has had more than 63 hospital admission days is not an appropriate response to the circumstances.

‘We do as much caring in the hospital as we do at home.’

… … …

‘What does the government think a parent does when the child is hospitalised? Do they think the parent goes home and has a break from the child and leaves the child on his/her own in the hospital? No, of course we don’t. … It’s full-on in the hospital day and night. Bathing. Brushing teeth, administering medication, liaising with medical staff, taking my son to other floors in a wheelchair for scans or treatment, supporting him, changing linen, helping him use the urine bottle, catching vomit, etc. Can’t have a break because [I] have to conserve leave for hospital admission times.’

In the Taskforce’s view, the 63-day limit on hospital stays should be removed because in many cases carers continue to provide care even when the care receiver is hospitalised.

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Recommendation 11

The Taskforce recommends that the government review the arrangements for temporary cessation of care for Carer Payment (child) to remove the limit on the allowable number of hospital admission days, subject to appropriate review arrangements.

Shared care

In 2005 the Australian Government introduced a new reform agenda in family law that represented a generational change and cultural shift in how family separation is managed: away from litigation and towards cooperative parenting. The Family Law Amendment (Shared Parental Responsibility) Act 2006 gave effect to some of the reforms and promoted the objective of ensuring that ‘children have a right to have a meaningful relationship with both their parents and that parents continue to share responsibility for their children after they separate’.38 It ensured that a less adversarial approach would be adopted in all child-related proceedings under the Family Law Act 1975.

The best interests of children were to be met by both parents being involved in the child’s life, ensuring that parents fulfilled their duties in the care, development and welfare of their children, and recognising that children have a right to spend time and communicate on a regular basis with both their parents and other people significant to their care, welfare and development, such as grandparents and other relatives.

In situations of family breakdown, there is an apparent contradiction between the presumption of equal shared care within the Family Law Act 1975, as amended, and the practical application of social security provisions to separated parents in accordance with the Social Security Act 1991—for example, for the purposes of Parenting Payment. The rigid nature of the relevant provisions does not allow for the many shared arrangements which are becoming increasingly common, particularly since the recent legislative amendments in the family law area.

Compared with the total Carer Payment population, a higher proportion of Carer Payment (child) recipients were divorced or separated (28 per cent compared with 15 per cent). A lower proportion of Carer Payment (child) recipients were single (8 per cent compared with 17 per cent for the total Carer Payment population).

Child support data from June 2005 provided some insight into shared care arrangements. A parent/guardian was in receipt of Carer Payment in around 9,300 child support cases (which represented about 1.3 per cent of the child support population); however, it is not possible to determine what percentage of these were Carer Payment (child). Of the total cases, approximately 300 had a parent/guardian who also had shared care39 of the child or children. This represented around 140 payers and 170 payees.40 None of these cases had both parents/guardians receiving Carer Payment.

It is expected that in the future a greater number of separated parents will be sharing the care of their children, including children with severe disability, on a fifty-fifty basis. Under the social security legislation, it is not possible to pay a part-rate of Carer Payment for part-time care, nor is it possible for a person to be in receipt of Carer Payment and another social security income support payment at the same time. To be eligible for Carer Payment (child) the carer must be providing constant care.

This means, for example, that a parent with shared care arrangements in place cannot be receiving Carer Payment (and therefore be exempt from participation requirements and the requirement to look for work) for the time they are providing high-level care for their child with disability and also receive Newstart, for example, for the times that they may be available for work when the other parent is providing care.

There is also the question of whether it is reasonable to expect carers to look for work in this situation, as the care may be shared on a fortnight-about, week-about or part-week-about basis, and it may be very difficult for carers to find employment in these situations. It is also not currently possible for two carers to receive payment for one child with severe disability unless the severity of the condition is such that two carers are required to provide the constant high-level care required.

In considering this issue, the Taskforce is of the view that parents in shared care situations, where these are endorsed by the courts or articulated in an agreed parenting plan, should have equitable access to Carer Payment (child) or to other appropriate financial assistance. It acknowledges that there are difficulties inherent in movements between payments, particularly those with participation requirements and those not subject to such requirements.

Recommendation 12

The Taskforce recommends that eligibility for Carer Payment (child) recognise situations where parents have shared caring responsibilities that are endorsed by the courts or articulated in an agreed parenting plan and these arrangements preclude each parent from substantial workforce participation.

Grandparent and kinship carers

The problems identified for short-term or episodic care and for shared care may also apply to grandparent and kinship carers. Kinship care has been defined as the placement of children with relatives, people without a blood relation but who have a relationship with the child or family, or people from the child’s and/or family’s community.41

For the Taskforce, the main tenet is that the person who is providing the care to the child with disability should be the person who receives the payment. The Taskforce is aware that many grandparents and kinship carers experience difficulties when they are not recognised as the primary carer because no formal order is in place. In addition, grandparent and kinship carers may be reluctant to pursue access to financial support where a formal order is in place in case it causes additional stress in an already stressful, and sometimes volatile, family situation.

Many carers in this situation find themselves becoming carers unexpectedly and with little notice of their change in circumstances, resulting in significant negative financial impacts. If these carers wish to protect the children in their care and avoid them being returned to an undesirable situation, they may go without payment rather than pursue a course of action that may inflame the situation.

The difficulties for service delivery agencies in identifying who is providing the majority of the care, or ‘constant care’, in these situations may lead to complexities in terms of who gets the higher rate Carer Payment with no participation requirements and who may receive a lesser paying income support payment with participation requirements. The Taskforce acknowledges that this is an issue government agencies are grappling with, particularly in relation to Indigenous carers and children.

Technically, grandparents are eligible for the full range of Australian Government family payments and income support payments, including Carer Payment (child), Family Tax Benefit, Baby Bonus and Maternity Immunisation Allowance. Grandparent carers on an income support payment may be also be eligible for the Grandparent Child Care Benefit, which covers the full cost of approved child care for 50 hours per child per week. In addition, grandparent carers can obtain a non-income tested foster child Health Care Card for the children in their care. Access to these payments and benefits is largely limited to those family circumstances where a formal care agreement is in place, usually endorsed by the courts.

The Taskforce notes that the government has announced amendments to the Welfare to Work arrangements that recognise the important role grandparents and other relatives play in raising and caring for children. From January 2008, a grandparent or other relative on income support who is the main carer of a child will be able to access a 12-month renewable and automatic exemption from the requirement to work or look for part-time work where there is a Family Court order in place.

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Terminal conditions

There are two ways in which carers of children with terminal illnesses may qualify for Carer Payment (child). First, under section 197(2A) of the Act, a child can meet the definition of ‘profoundly disabled child’ and therefore qualify his or her carer for payment if a medical practitioner certifies in writing that the child is in the advanced phase of a terminal condition—that is, the child is not expected to live for a period substantially longer than 12 months and will require continuous personal care for the remainder of his or her life because of the condition. No additional medical criteria have to be met, but carers must still meet means test and residency requirements.

Second, a child can be a ‘profoundly disabled child’ if the treating doctor certifies that the child meets either the medical or behavioural criteria for payment. To satisfy the medical criteria, three out of seven conditions must be met, one of which is that the ‘medical practitioner has certified in writing that the child has a terminal condition for which palliative care has replaced active treatment’ (section 197(2)(c)(vi) of the Act). An additional two medical criteria must also be met for the carer to qualify in this situation, as well as means test and residency requirements.

To be eligible for Carer Payment (child), continuous personal care must be needed for six months or more. If, however, the child’s condition is terminal and the child’s life expectancy is less than six months, the requirement is for continuous personal care to be provided for the remainder of the child’s life.

The advice to the Taskforce is that these requirements are problematic. Many doctors are reluctant to provide the required certification because of the inherent uncertainties, particularly in responsibly estimating life expectancy. Concern about the impact of both the diagnosis and the prognosis on the patient and on his or her family was also identified as an issue in the consultation process and is supported in the medical literature as a matter of concern for health professionals.

As discussed above in the context of assessment more generally, these concerns may reflect difficulties faced by general practitioners (often the family doctor) in providing the required certification of the length of the terminal condition. The evidence suggests GPs may have little exposure to or knowledge of the condition, the care required or the care being provided. In practice, both the diagnosis and prognosis are likely to be made by a consultant specialist who is unlikely to be involved in filling out the Centrelink forms. The evidence suggests, however, that even for specialists estimating life expectancy accurately can be very difficult.

In addition to concerns about the impact of the prognosis, medical professionals are reported to be apprehensive about the possibility of legal action if they are wrong about a prognosis.

In Australia, a treating doctor who believes that a child has a 5 per cent or 10 per cent chance of survival may not be willing to certify in writing on a Carer Payment (child) claim form that the child is not expected to live for more than 12 months.

In a focus group held as part of the consultation process, paediatricians said that there are many issues with the Carer Payment (child) medical report forms and children with illnesses that may be terminal. Parents may find it very difficult to accept that their child has a terminal illness, and consequently the paediatrician may be reluctant to tick the ‘terminal condition’ box on the Carer Payment (child) medical report. Similarly, paediatricians may be reluctant to categorically classify as terminal those patients who do not have a definitive diagnosis but whom the paediatrician believes may be terminal.

Even with a diagnosis, paediatricians may not be entirely sure that the condition is terminal and therefore may be unwilling to classify the patient as such on the form. Other research has found that physicians vary in how they regard the key concept of being ‘terminally ill’. They may also feel poorly prepared for prognostication, find it stressful and difficult to make predictions, and believe that patients expect too much certainty and might judge them adversely for prognostic errors.

Family doctors may also feel there is a conflict between their roles as an advocate for their patient and as a ‘gatekeeper’ for access to the income support system in filling out the medical report form.

Of particular concern for carers was the requirement that palliative care must have replaced active treatment. Many carers, perhaps against all the odds, place their last hopes on continuing treatment. Including this requirement in the medical criteria for determining eligibility does not seem to meet the intention of assisting carers in this situation, and the Taskforce had some difficulty in understanding why this provision was not adjusted when the Act was amended in 2002.

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Similarly, the Taskforce noted that there were different approaches taken to terminal conditions across income support payments. For Carer Payment (child), for example, a child has a ‘terminal condition’ if he or she is not expected to live for substantially longer than 12 months, while for the purposes of Disability Support Pension eligibility an illness is considered to be terminal if the person’s life expectancy is less than 24 months. This issue is discussed further in Chapter 7.

‘My child is diagnosed with cancer, leukaemia, etc. There will be a recommended course of treatment which will give my child an x% chance of survival and, depending upon the success or failure of that treatment and anticipated life expectancy, that cannot be determined until the finalisation of the treatment. Or, I can choose not to actively treat my child’s condition and my child’s life expectancy may therefore be “less than 12 months” assessed for Carer Payment and therefore I (and my partner if applicable) will qualify for Carer Payment. Of those, most parents/carers will choose the path of active treatment.’

Carers are understandably sensitive about discussing the details of their children’s conditions with Centrelink staff, particularly when required to do so on several occasions either because of ‘problems in the system’ or because of reviews. Reviews, in terms of both numbers and the way in which they are conducted, were a source of concern and complaint. Current Centrelink practice is to contact carers with terminally ill children every six months to check on the child’s condition. It is the Taskforce’s opinion that, due to the sensitivity of these situations and the distress caused to carers, these reviews should instead be conducted every 12 months.

The Taskforce recognises the emotional and material impacts for carers and their families involved in a terminal diagnosis. It is also conscious that in introducing the Carer Adjustment Payment (CAP) the government has made available a very flexible form of assistance in catastrophic circumstances where Carer Payment (child) is not payable. The diagnosis of a terminal illness is for many families a catastrophic event. While CAP is a temporary program and is not a suitable model, the flexibility of what is in effect an unconditional lump-sum payment has great attraction.

The Taskforce has elsewhere noted the very significant costs, both direct and indirect, of care. These costs, which are not reflected in Carer Payment (child), may be recognised, at least implicitly, under the CAP scheme.

While the changes recommended by the Taskforce, if adopted, will mean that a number of carers—including carers of care receivers with a terminal condition who presently do not qualify for Carer Payment (child) and who therefore can apply for CAP assistance—will become eligible for Carer Payment (child), that will not provide assistance with the costs of care.

The Taskforce strongly supports the continuation of special provisions for those who are caring for a child with a terminal condition where life expectancy does not meet, or cannot be said to meet, the statutory minimum requirement to provide continuous care for six months. The alternative would be to abandon the minimum requirement, but that option is not supported by the Taskforce.

As the normal requirement is only relaxed because of the care recipient’s condition, it is accepted that it is reasonable for the claimant to establish:

  • the limited average life expectancy of the care receiver, and
  • the need for continuous care for the life of the care receiver.

To achieve this, it is the view of the Taskforce that it should be enough for the medical evidence to establish that, irrespective of any treatment, in all probability the child has a life expectancy of not substantially longer than 24 months, and continuous care, including emotional and physical support, will be needed for the rest of the child’s life.

In terms of administering the payment, it is the view of the Taskforce that the carer should be required to advise the appropriate authorities within a reasonable time of the death of the care receiver. If this is not done within 28 days, for example, any payment beyond that period should be recoverable unless an extended notification period has been granted, in line with section 72(6) of the Act.

The Taskforce has referred above to the need for different approaches to the administration of the payment and the need for sympathetic and efficient management. Those comments apply with added force in relation to situations involving terminal conditions.

Recommendation 13

The Taskforce recommends that section 197(2)(c)(vi) of the Social Security Act 1991— which requires that a medical practitioner certify in writing that the child has a terminal condition for which palliative care has replaced active treatment—be amended to remove the provision.

Recommendation 14

The current requirement in section 197(2A) of the Social Security Act 1991 for a medical professional to certify that a child has a terminal condition and will not live for substantially longer than 12 months should be replaced with a process that assesses the average life expectancy for a child with the same or a similar condition.

Recommendation 15

The Taskforce recommends that the current requirement in section 197(2A) of the Social Security Act 1991 relating to terminal conditions and the life expectancy of a child be amended from the current 12 months to an average life expectancy not substantially longer than 24 months.

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Recommendation 16

The Taskforce recommends that the frequency of periodic reviews for a carer in receipt of Carer Payment (child) for a child with a limited life expectancy be extended from six months to 12 months.

Payment service delivery system

As mentioned above, FaCSIA has policy responsibility for carer payments, and Centrelink administers the delivery of the payments through its more than 300 offices nationwide. Perceived problems with the way the program is structured and administered were a consistently and emotionally repeated concern during the consultation process. As the public face of the program, not surprisingly Centrelink came in for criticism.

The Taskforce acknowledges that the administration of the program is inherently problematic. Carers seeking access to the payment are often under great stress. Compounding this, the legislated process is complicated and dependent on the cooperation and support of other people—for example, general medical practitioners who often have little or no time to complete protracted forms and have little or no involvement with, or insight into, the care needs of the child, while the carer has no real opportunity to put his or her case.

Even carers whose payments were approved criticised the process. The dissatisfaction is exacerbated when the entitlement is reviewed because the care receiver may, in someone’s opinion, have improved to a point where he or she no longer meets the criteria. All too often, the reality for the carer is that nothing has changed—the child is still suffering from exactly the same condition and is still receiving the level of care demanded by that condition.

Where payment, in accordance with the legislation, is not approved, the applicants’ feelings of grievance are compounded by frustration and a sense of injustice and of personal rejection for themselves and their children. The Taskforce’s recommendations in relation to the criteria for accessing the payment and the proposed procedural changes, will, if they are approved, remove some or many of those root causes of complaint. These recommendations appear in Chapter 6.

In the view of the Taskforce, there are three related payment delivery management issues that must be addressed:

  • the interface with external stakeholders who are not customers,
  • the relationship with customers (and potential customers), and
  • the administration of the payment.

Although other models may be worth considering, at least in relation to some elements, the Taskforce has assumed that Centrelink, as an agent of FaCSIA, will continue to be responsible for the delivery of the payments.

The evidence provided during the consultation process indicates that Centrelink is at least not uniformly managing the interface with external stakeholders and may not be handling customer relations effectively.

There is a real need to do more to improve public understanding of the nature and intent of Carer Payment (child) and of the processes involved in considering applications. External stakeholders can play a significant role in getting the message across about the payments and assisting potential applicants to navigate through the process. However, in the view of the Taskforce, this is not a substitute for the roles of Centrelink and FaCSIA in ensuring effective public communication and providing informed assistance to applicants.

The government has, particularly in recent times, recognised the value of public information programs. The Taskforce unreservedly supports the view that, where the objective is to inform the public of their rights and entitlements, including any changes to those rights and entitlements, a major public information program is essential.

The evidence available to the Taskforce indicates that, for whatever reason, the dissemination of information about Carer Payment (child) has not been effective. This is illustrated by the fact that, in a leading national children’s hospital, specialist staff who deal on a daily basis with carers were, at the time of consultation, unaware of changes to the legislation and were supplying prospective applicants with, and helping them to complete, out-of-date forms.

The Taskforce is aware that when comparable problems were experienced or anticipated in the 1990s with changed rules regarding the treatment of financial assets for pension purposes, specialist officers (Financial Information Service Officers) were used to inform stakeholders, including relevant institutions and associations, of the changes and how they operated. While it is clearly a matter for the relevant agencies, there would seem to the Taskforce to be a sound case for considering the use of a similar mechanism for Carer Payment (child). Such a response would seem to be entirely consistent with the objective of engaging with such bodies in order to facilitate the efficient and cost-effective administration of the payment.

The evidence also indicates, however, that the payment is not well understood within a significant number of Centrelink offices. As has been acknowledged, the scheme as legislated is problematic but in the view of the Taskforce that increases the onus on agencies to ensure that staff are properly trained and that there is a consistent view between agencies on the policy and the interpretation of the legislation.

‘If we call Centrelink multiple times about the same issue we receive many different answers.’

… … …

‘I have been reduced to tears at Centrelink by the staff.’

… … …

‘I didn’t know these payments were available and Centrelink didn’t tell me.’

It is the view of the Taskforce that, due to the stresses inherent in the circumstances of Carer Payment (child) applicants and the complexity of the payment, there is a strong case for ensuring that from the outset staff dealing with applications should have received special training to ensure that they both understand the technicalities and can provide the required professional assistance in a way that recognises the very real difficulties faced by carers.

The ABS estimated that almost half of the primary carers of children with severe disability needed more support and assistance.42 Ideally, the relationship with a Carer Payment (child) customer should be managed by an identified and suitably trained customer relations officer. Such an arrangement would avoid the need to ‘start from scratch’ at each contact (a major cause of frustration and discomfort) and generally engender a more effective relationship based on an understanding of the circumstances. Whether such an arrangement could be extended to other services provided for the customer is a matter for consideration by the relevant agencies. There will be a cost involved in achieving this, but there will also be savings and significant advantages in terms of overall customer satisfaction.

The Taskforce notes that the recent autism package announced by the government included provision for specialist childhood autism advisers to help parents and carers to find the best services available to meet their needs. Existing autism stakeholder groups will also be provided with early support funding to build their capacity to provide support for families. In the Taskforce’s opinion, a similar approach could be developed for carers of children with high-level care needs.

The model acknowledges the difficulties carers of children with autism may have with accessing information about the range of supports possibly available to them. However, this issue is not confined to this group of carers. In the consultation process, carers identified that there are many gaps in the support available for them, and the assistance available is delivered through many agencies across all levels of government. The complexity of the system can be confusing for carers and case management style assistance may be of particular benefit for carers of children with severe disability. A summary of the information needs of carers appears at Appendix H.

‘I needed an advocate to help me understand the process; it was stressful. Why couldn’t this kind of help be available through Centrelink?’

… … …

‘I believe that each child should have a permanent coordinator who knows all the agencies and facilities, and can match them to the needs of that child. Most of the government money is spent communicating back and forth between agencies, personnel, and the clients. There are a lot of pamphlets and information, but one person has not got 1,000 hours to read all of it, let alone try to absorb, contact, manoeuvre and utilise the facilities that are available.’

… … …

‘We only coped because a nice social worker from the hospital told us about the payment and helped us with all the forms. We have spoken to others who didn’t get any help like this.’

… … …

‘I asked to have an interview with someone who knew about disabilities. When I got to the office and I asked the officer some questions, he said he didn’t know about disability issues. Why can’t we speak to someone who understands?’

The content and design of the application forms for Carer Payment (child) was also a cause for complaint. Generally the rigidity of the ‘tick-box’ approach was seen as providing no opportunity for the carer to identify the care needs of the child, nor did it allow for proper identification of the disability or medical condition. The Taskforce recognises that these forms reflect the current approach to assessment and eligibility, and that changes to these arrangements may result in more user-friendly forms and application processes.

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Recommendation 17

To improve service delivery for carers of children with severe disability or medical conditions, the Taskforce recommends that:

  • Centrelink and the Department of Families, Community Services and Indigenous Affairs work together to develop and implement a more targeted service delivery strategy to ensure services meet the needs and circumstances of carers applying for Carer Payment (child);
  • Centrelink forms, letters and data-capture and data-exchange arrangements in relation to carers be further reviewed, noting the work already completed through the Colbeck review,43 to ensure they are appropriate; and
  • carers receive appropriate information, advice and support, particularly in the first 12 months after contact with Centrelink, through dedicated case coordinators.

15 Australian Institute of Health and Welfare 2004, Carers in Australia.

16 Ibid., p. 23.

17 Cummins, R 2007, The wellbeing of Australians—carer health and wellbeing.

18 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0.

19Australian Institute of Health and Welfare 2006, Disability Updates: Children with Disabilities, Bulletin 42.

20 Association for Children with a Disability 2003, Supporting Siblings: When a Brother or Sister Has a Disability or Chronic Illness.

21 Access Economics Pty Ltd 2005, The Economic Value of Informal Care.

22 AMP NATSEM 2005, The Cost of Caring in Australia 2002 to 2005.

23 Saunders, P 2006, The Costs of Disability and the Incidence of Poverty, SPRC Discussion Paper No. 147.

24 Ibid.

25 The Taskforce on Care Costs was established in November 2003 with the objectives of investigating the costs of care and workforce participation of carers, and promoting policy reforms. The taskforce’s report, The Hidden Face of Care: Combining work and caring responsibilities for the aged and people with a disability, was released in November 2007.

26 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0.

27 Department of Employment and Workplace Relations 2007, Building Stronger Families—The Benefits of Moving from Welfare to Work.

28 Anglicare Tasmania submission to the Taskforce, 2007.

29 Australian Bureau of Statistics 2005, Australian Social Trends 2005, cat. no. 4102.0.

30 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0, and FaCSIA analysis of 2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

31 FaCSIA analysis of 2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

32 Australian Institute of Health and Welfare 2006, Disability Updates: Children with Disabilities, Bulletin 42.

33 FaCSIA analysis of 2003 Survey of Disability, Ageing and Carers Confidentialised Unit Record File.

34Task Force on Care Costs 2007, The Hidden Face of Care: Combining work and caring responsibilities for the aged and people with a disability, p. 5.

35Carer Allowance (child) is payable for as many children as meet the criteria, but Carer Allowance (adult) is payable only for up to two adults who meet the criteria.

36 The Taskforce notes that in certain circumstances the dependent child of a disabled adult for whom the carer is providing care can be taken into account in assessing eligibility (see section 198(2)(d) of the Act).

37 A carer is eligible for payment if the child’s condition is terminal and the child’s life expectancy is measured either in weeks or months, or is not substantially greater than 12 months.

38 Family Law Amendment (Shared Parental Responsibility) Bill 2005, Revised Explanatory Memorandum, 2006.

39 In this context, shared care is where the payee has a care percentage of 40–60 per cent for one or more of the children.

40Customers who are payees as well as payers are counted under both categories.

41 Richardson, N. et al. 2005, The Recruitment, Retention, and Support of Aboriginal and Torres Strait Islander Foster Carers: A Literature Review, Australian Institute of Family Studies.

42 Australian Bureau of Statistics 2004, Disability, Ageing and Carers: Summary of Findings, cat. no. 4430.0.

43 Senator Richard Colbeck was the Chair of the Forms and Letters Task Force, which was introduced to improve the content of forms and letters through the removal of unnecessary complexity, and abolish forms and letters where possible.

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Chapter 5: Carer Payment (child) Eligibility

The Taskforce compared the circumstances of carers of children under the age of 16 years with severe illness or disability who currently qualify for the payment with those who have not qualified, and drew on Carer Payment (child) and Carer Allowance (child) application, eligibility and recipient data and case studies.

Current eligibility criteria

Chapter 3 of this report outlines details of the eligibility criteria and assessment processes. The evidence available from the review established that there are many children who, because of severe disability or medical conditions, by any reasonable standard clearly require a level of extra attention and supervision such that the carer is precluded from substantial participation in the workforce but is not eligible for the payment.

As discussed above, currently the eligibility criteria for Carer Payment (child) are prescribed by reference to the consequences of, or treatment for, a limited number of circumstances that are used as a surrogate for determining the actual care needs of the child. This contrasts with the comparable Carer Payment (adult), which is determined by reference to the directly assessed care needs of the care receiver.

The difference between the methods of assessment for Carer Payment (child) and Carer Payment (adult) is apparently related to a view about the general, and particularly the agerelated, care responsibility inherent in parenthood. The evidence available to the Taskforce, however, indicates that the additional care necessarily involved in caring for a child who has a severe disability or is suffering from a severe medical condition compared with the care required by a child of similar age who is not suffering from such a disability or condition can be identified in the majority of cases and becomes increasingly demonstrable with older children. Under the current regime the issue, then, is the impact of those additional care needs as related to workforce participation.

There is increasing pressure from interested stakeholder groups for recognition of a range of specific conditions as automatically meeting the qualifying requirement, similar to the Lists of Recognised Disabilities for Carer Allowance (child). While there are some conditions which by their very nature and without exception are so severe that they will always meet any qualifying medical requirement, many conditions present a range of impacts across care receivers. Some are unique, such as chromosomal disorders, with limited diagnostic information and unclear intervention plans and no clear prognosis.

Even within a single condition, the impacts are not uniform but can range from extremely severe to mild. For the purposes of assessing eligibility for Carer Payment (child), the Taskforce is of the view that the test should not be the condition as such but should be the level of care needed by the care receiver as a result of the condition and the provision of that care by the carer. This issue is discussed further in Chapter 6.

Not surprisingly, the major issue identified by the Taskforce through the review process related to the perceived inequity of the current eligibility requirements, particularly the need to meet arbitrary and, in the view of many, irrelevant specific care-related criteria.44

The specificity of the criteria means that many carers whose caring responsibilities are at least as necessary and as great as those of carers who qualify for the payment are precluded from receiving the payment, even when they meet the other criteria.

Ongoing advances in medicine and in medically applied technology combine to make the prescription of specific conditions and their attendant care needs even more inappropriate, inefficient and inequitable.

Given its appreciation of the underlying purpose of Carer Payment (child), the overwhelming conclusion of the Taskforce is that the current eligibility criteria are too restrictive and consequently the payment is not effectively achieving its intended purpose.

Recommendation 18

The Taskforce recommends that the eligibility criteria for Carer Payment (child) be amended to recognise the level of care required by and provided to children with severe disability or medical conditions.

Ineligible carers

An analysis of the number of applications for Carer Payment (child) that are granted compared with the number that are rejected provides a stark illustration of the restrictive nature of the current eligibility process.

In 2005–06, around 12 per cent of applications for Carer Payment (child) resulted in payment being granted. This is by far the lowest grant-to-application ratio of all income support payments.

Table 2 provides the relevant data.

Table 2: Carer Payment (child) grants and rejections
Carer Payment (child) claims
Financial year Granted Rejected Total claims
2004–05 502   11.7% 3,791   88.3% 4,293
2005–06 591   12.1% 4,299   87.9% 4,890

Note: It is possible for customers to have more than one claim record—for example, a rejected claim can be followed by a granted claim.
Source: Standing Committee on Finance and Public Administration, Answers to Questions on Notice, Department of Human Services
and Agencies, Supplementary Budget Estimates, 2006–07.

Centrelink advised the Taskforce that its claim streaming processes also significantly reduce the number of people who lodge a claim for Carer Payment (child), as carers who enquire about the payment are informed by Customer Service Advisers about the stringent medical, care and means test requirements.

While appreciating the need for accurate advice, the Taskforce has some concerns that this approach may be discouraging potentially eligible carers from applying. The Taskforce acknowledges, however, that anyone may choose to apply, regardless of their circumstances.

The Taskforce notes that the current assessment process also does not cater for children with mental health conditions. While the behavioural criteria may cover some of the circumstances these children experience, the Taskforce is not convinced that the caring load associated with many of these conditions is sufficiently allowed for in the current arrangements.

This was also evident in the submissions, with those caring for children with mental health conditions noting that their circumstances did not fit into any of the current eligibility criteria.

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Analysis of appeals

A brief analysis was done of 35 cases where unsuccessful applicants had appealed the unfavourable decision to the Social Security Appeals Tribunal and/or the Administrative Appeals Tribunal, or had used other mechanisms such as the Scheme for Compensation for Detriment caused by Defective Administration.

Of the 35 cases analysed, 29 related to Carer Payment, five related to Carer Allowance and one related to both. Eight of the 35 cases involved act of grace decisions; and 19 of the Carer Payment cases involved Carer Payment (child).

The reason most often given for rejecting a claim for Carer Payment was a failure to meet the‘profoundly disabled child’ criteria, expressed as, for example, ‘the child’s condition satisfies sections 197(2)(a) and (b), but not section 197(2)(c) of the Act in that her/his condition includes only one and not three circumstances set out in the sub-section’ or ‘Carer payment rejected on basis that there were only two ticks’.

Case studies

The Taskforce has included the following case studies to illustrate in a practical way the kinds of difficulties carers of children with severe disability or medical conditions experience when applying for Carer Payment (child).

Case Study 1

The child, aged 10, has a very severe peripheral neuropathy which is the cause of major disability. It is a variant of Charcot-Marie-Tooth syndrome (peripheral neuropathy) and is not fatal. The condition involves progressive deterioration of the muscles of the feet, lower leg, hand and forearm. The child is confined to a wheelchair for many activities of daily living and is reliant on her parents for dressing, washing and help with feeding. She has extremely poor hand strength and is unable to do anything that requires very fine motor control. She needs assistance at school and has a special teachers aide during recess and lunch times. Her parent is not eligible for Carer Payment (child).

Case Study 2

A Carer Payment (child) application was considered ineligible as it failed to meet the medical criteria. The child is six years of age and has Costello syndrome (lifelong illness). The child requires full-time care as he is mentally and physically disabled, dependent on a walking frame, and incontinent. He also requires full-time assistance at school. The mother initially took maternity leave but has not been able to work for seven years.

Case Study 3

A child who is blind, deaf and unable to speak, who cannot walk and cannot use his hands was deemed not to be eligible for Carer Payment (child) because he didn’t meet three of the seven ticks on the medical report. However, a full day’s work is required by his carer each day to support him, making it impossible for the carer to gain paid employment.

Case Study 4

A Carer Payment (child) application was considered ineligible as it failed to meet the medical criteria. The child is one year of age and has congenital nephrotic syndrome– Finnish type (lifelong illness). It is associated with chronic renal failure. The child requires full-time care and the mother is unable to return to work. Treatment has included extended long stays in hospital, daily hospital attendance for albumin infusions which take between five and nine hours, a permanent central line, special formula and daily medications. The child may require a kidney transplant in a few years or peritoneal dialysis.

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Case Study 5

A Carer Payment (child) claim was rejected as the child was assessed as having only one of the three conditions necessary to fulfil the medical criteria. The child is two years old and has been diagnosed with skeletal dysplasia with global development delay and hypothyroidism (likely to be lifelong). The child is unable to sit or walk without support, unable to feed by themselves and suffering from hearing loss. The child requires periodic hospital stays. The medical report diagnoses the child as having severe multiple disability and requiring continuous personal care.

Case Study 6

A child, aged 11, has Rett syndrome, a neurodevelopment disorder that is a common cause of profound mental impairment in girls. The condition often involves loss of purposeful use of the hands and serious disability for life, with reduced muscle tone and seizures. The onset of symptoms in this case was gradual. At 17 to 18 months she lost her word skills and effective use of her hands, and only began walking at five years of age. She is unable to feed herself and move around due to visual problems. She has no speech, is not toilet trained and has intellectual problems which are increasing. She attends a mainstream preschool for four days per week and receives assistance from a teacher’s aide.

The child does not meet the criteria for a ‘profoundly disabled child’ as she does not have three of seven circumstances and also does not meet the criteria for dangerous, aggressive or sexually deviant behaviour.

44 In particular, satisfying three of the following seven conditions:

  1. the child receives all food and fluids by nasogastric or percutaneous enterogastric tube
  2. the child has a tracheostomy
  3. the child must use a ventilator for at least 8 hours a day
  4. the child:
    • is 3 or over and has faecal incontinence day and night; or
    • is under 3 and is expected to have faecal incontinence day and night at the age of 3
  5. the child:
    • is 2 or over and cannot stand without support; or
    • is under 2 and is expected to be unable to stand without support at the age of 2
  6. a medical practitioner has certified that the child has a terminal condition for which palliative care has replaced active care
  7. the child:
    • is at least 6 months old and requires personal care on two or more occasions between 10 pm and 6 am each day; or
    • is under 6 months but is expected to require personal care on two or more occasions between 10 pm and 6 am each day at the age of 6 months.

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Chapter 6: Assessing Care Requirements

The Taskforce explored the most appropriate mechanism for assessing the care requirements of children under 16 years of age with severe illness and/or disability, including examining options for amending the existing carer and medical eligibility criteria to reflect current medical, technological and carer approaches and practice.

Current assessment processes

The current process for assessing eligibility for Carer Payment (child) is based on the requirements of section 197(2), (2AA) and (2A) of the Social Security Act 1991 (see Appendix F). The child must meet the legislative definition of a ‘profoundly disabled child’ for the carer to qualify for Carer Payment (child), which involves the child requiring continuous personal care for six months or more (or, if the condition is terminal within six months, for the rest of the child’s life), meeting three of seven circumstances, or meeting certain behavioural criteria (for children at least six years of age). The seven circumstances are a mix of specific medical interventions, management of bodily functions (continence and ability to stand), terminal conditions criteria and need for attention between 10 pm and 6 am each day. It is assumed that a high level of care is being provided to the child when three out of seven of these circumstances apply.

In contrast, eligibility for the other carer payments is assessed in part by the use of two tools: the Adult Disability Assessment Tool (ADAT) for Carer Payment (adult) and Carer Allowance (adult), and the Child Disability Assessment Tool (CDAT) for Carer Allowance (child). Eligibility for Carer Allowance (child) may instead be determined by an assessment against the Lists of Recognised Disabilities. The Lists of Recognised Disabilities contain specified disabilities and medical conditions that are consistently severe enough to qualify a parent or other carer of a child for Carer Allowance (child). If a child has a disability or medical condition cited on the lists, the parent or carer qualifies for Carer Allowance (child) without further medical assessment of the child.

The ADAT measures the care needs of a person or persons receiving care by assessing the level of help they need with activities of daily living such as mobility, communication, continence, personal hygiene and eating, as well as a range of cognitive and behavioural areas. The ADAT was designed to result in a score that provides equitable access to financial assistance for people with similar levels of disability, even where the cause and type of disability differ.

The CDAT measures the severity of a child’s disability by assessing functional and pre-functional ability against standards appropriate to the child’s age. Functional ability is measured in a series of categories including language skills, self-care skills, social and community skills, and fine motor and gross motor skills. In addition, the child’s behaviour is taken into account where it is significantly affected by the disability, along with any special care needs.

The ADAT and CDAT are based in disallowable instruments.45

Current assessment issues

Carer Payment (child) is paid to those who are not able to participate actively in the labour market for more than 25 hours per week due to their caring responsibilities. Current assessment processes, however, do not measure the level of care being provided to the child with disability and therefore do not directly support or substantiate the claim that the carer is not available for full-time work. Measuring the level of care would provide a more accurate assessment of whether the claimant is available to participate in the labour market.

The current legislatively based assessment process for Carer Payment (child) does not allow for a quantitative, individual assessment of the child’s care requirements nor does it accommodate updates or changes to medical treatments, technologies, care approaches and practices that impact upon level of care need. Including such items in legislation severely constrains the capacity to make timely responses to advances in medicine and technologies, or in treatments and therapies.

For example, there have been changes in the recommended procedures for non-oral feeding and tracheostomies that may alter the level of care required or, alternatively, promote the use of supplementary strategies that are outside the current specific medical circumstances criteria. It is now recommended that feeding by percutaneous enterogastric (PEG) tube be supplemented by small amounts of oral intake where possible. Children receiving nutrition through this regime will not meet the criteria as currently stated in the medical report form, despite the fact that their level of care need is at least as high as that of children who are receiving all food and fluids by PEG tube.

‘We were told that three of the boxes need to be ticked in order to qualify. [Our son’s] paediatrician had not ticked that we have to provide care during the night (even though we do). His paediatrician refused to check the nasogastric/gastrostomy tube box because our son is able to swallow some food/fluids and therefore does not receive all food/fluids by tube. The fact remains, however, that he does have a gastrostomy tube and if he did not have it he would slowly starve to death. He requires exactly the same amount of tube care as a child who receives nil by mouth. In actual fact, he requires more supervision, as he needs to be closely monitored while swallowing foods/fluids. And so the claim was rejected. We provide so much care for our son, and we couldn’t explain that on the form.’

… … …

‘I filled in the forms but there didn’t seem to be any categories in there that related to a child like my son. To me a lot of the questions tended to be directed more toward certain other disabilities/illnesses, but nothing like our son has. As expected, we were told we were unsuccessful in our application.’

While it is recognised that tracheostomies require a high level of care to ensure that they are safely managed, evidence suggests that their prevalence as a long-term option has reduced over the last 10 years. There are potentially other recently developed life-sustaining medical or surgical procedures that also involve a high care load that are not included as options in the current medical report. This causes anomalies in the current assessment process for Carer Payment (child).

The current legislation is specifically focused on the circumstances of the child and does not offer any incentive or recognition for parents or carers who provide active, proactive and intervention treatments to significantly reduce or delay the onset of care requirements for their child. These treatments or interventions can impact significantly on the onset or effect of an illness or disability and therefore reduce its effects, and this is evident in conditions such as autism or developmental delays. These treatments or interventions can be very time consuming and are sometimes subject to strict or rigid schedules, yet they are not currently measured as part of the provision of care.

There is some evidence that the different assessment processes for Carer Payment (child) and Carer Payment (adult) are delivering inequitable outcomes for clients. This is indicated by the increased number of Carer Payment recipients once a child turns 16 years of age and the carer applies for Carer Payment (adult). In June 2007, for example, around 250 people were in receipt of Carer Payment (child) for a child aged 15 and around 880 people were receiving Carer Payment (adult) for an adult child aged 16. At 17 years of age, the number rises to over 1,000, a fourfold increase on Carer Payment (child) numbers.

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Application processes

To apply for Carer Payment (child), a carer must complete a Centrelink claim form outlining his or her personal details, those of the child, and the carer’s family circumstances including residency status and income and assets. The claim form does not include any questions about the child’s medical condition or disability, nor does it ask for details of the care being provided. It asks only whether the carer provides additional care to the child because of the child’s disability or medical condition, the date this care started and how many days per week the care is provided. The carer must also organise for the child’s medical practitioner to complete a medical report form, which includes the medical, behavioural and terminal condition criteria specified in the legislation. Around 76 per cent of medical report forms are completed by general practitioners and the remaining 24 per cent are filled out by specialist practitioners.

For Carer Allowance (child) applications, the carer completes the same claim form as for Carer Payment (child) but must arrange for a different form to be completed by the child’s treating doctor. This form contains the Lists of Recognised Disabilities and the CDAT, including a functional assessment of the child’s ability across a number of different domains.

For Carer Payment (adult) and Carer Allowance (adult), the carer completes a claim form that, in addition to personal details and so on, includes information about the care that the carer provides as well as the care receiver’s functioning and behaviour. The carer must also arrange for a health professional assessment, which can be completed by a medical practitioner, registered nurse, occupational therapist, physiotherapist, member of an Aged Care Assessment Team or Aboriginal Health Worker (in a geographically remote area) currently involved in the treatment of the care receiver.

If a treating health professional who is not a medical practitioner describes the care receiver’s condition on the assessment form as ‘terminal’, the contact details and formal qualifications of a medical practitioner who can certify the claim must also be provided. It is also noted that mental health professionals are not well represented on this list and that psychologists could be considered for inclusion on the list as treating health professionals.

‘It is very hard for a GP to properly assess and complete this form and they have to be completely guided by the parents. Information/reports/assessments provided by speech pathologists, psychologists and occupational therapists should all be taken into consideration as they know more about our child.’

… … …

‘The people who know my child are not my GP. They are a clinical psychologist and a speech pathologist. The GP only sees [him] when [he] is sick. I have told Centrelink that I would have to tell the doctor what to write.’

The appropriateness of using general practitioners as certifying doctors has in the past been questioned by the College of General Practitioners on the grounds that a general practitioner may not have the specialist knowledge of the child’s condition necessary to provide the required information.

The Taskforce is also conscious of the potential conflict of interest faced by medical practitioners when dealing with carers and care receivers who are likely to be dependent on the doctor’s certification to access Carer Payment. In these circumstances, the doctor is placed in the invidious position of balancing their role as an advocate for their patients with their current role and accountabilities in relation to the expenditure of public monies.

This dilemma is compounded when it comes to questions relating to the nature and extent of the care needed and to the provision of that care. Even where there is a treating doctor, the task of assessing the real care needs of the child and certifying that those needs are being met to an appropriate level are not matters that rely on medical knowledge or skills, nor are they matters that are within the realm of most family doctors.

The evidence provided to the Taskforce identifies these issues as a major failing in the system.

In addition to causing major problems for doctors, carers, care receivers and administrators, the current process, because it is based on surrogates for the care required rather than on an assessment of the actual care needs and the provision of that care, does not allow for consideration of the very significant individual differences in the care needs of recipients with similar or even the same conditions.

As noted above, qualification by reference to condition encourages payment creep and, while relatively straightforward to administer, distorts the purpose of the payment and creates expectations that in many cases cannot be met, leading to anger and frustration on all sides.

The Taskforce has identified three primary issues that, in its opinion, need to be considered when determining who is most appropriate to assess the level of care need of the child as well as the level of care being provided by the carer:

  • the potential conflict of interest and/or independence of the usual care provider,
  • the qualifications of the assessor, and
  • accessibility and the cost of assessment.

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It is the view of the Taskforce that an approach based on an assessment of the care needs of the child with severe disability or medical conditions would involve an appropriate medical practitioner certifying only the condition and the prognosis and identifying that there was a resultant need for care above and beyond that required by a child of comparable age who was not suffering from that condition. The nature and extent of that care would be decided on the basis of evidence provided by or on behalf of the carer.

Importantly, the carer should and would describe the caring role. The supporting evidence would include material from any involved health professionals, such as community nurses, occupational therapists and speech therapists; and others with a real knowledge of the care needed and provided, such as school teachers and respite workers. In cases where such evidence was not available or, alternatively, the independence or ecency of theassessment was of concern, an independent assessment may need to be considered.

There is a strong case, at least in some situations, for identifying and verifying the caring role through a team-based assessment similar to that used to assess aged care needs and employed in some state systems, notably Western Australia. Such an approach, while not limited to situations involving people from different cultural backgrounds or remote localities, may have special application to those situations. Whatever the process adopted, however, those situations do and will require special attention.

Issues raised in consultations

Many concerns about the current application and assessment processes were raised in submissions to the Taskforce and in the focus groups. Carers and health professionals identified several overarching issues:

  • the current assessment process is based on a brief description of the medical condition and a limited set of circumstances, and does not allow the carer to articulate details of the severity of the child’s disability and the consequent care load;
  • the application and assessment process is viewed as very complex, time consuming and sometimes very costly;
  • carers are not able to use existing test results and have the child’s medical condition recognised without seeking further examination;
  • carers may have difficulty gaining an appointment with the child’s treating doctor and may therefore have to use their local GP, who may have little knowledge of or contact with the child; and
  • medical practitioners may have difficulty in completing the form correctly, particularly as the eligibility requirements for payment are not clear.

These issues were supported by many comments through the consultation process.

‘I needed to find a doctor who understood the forms and could understand the needs of my child and cross-reference these needs to the form. It cost me $120 to access this paediatrician. A normal GP doesn’t have that full understanding. My GP doesn’t see my child. So there is the additional cost of seeing a specialist.’

… … …

‘Because it is such a gruelling process, a lot of people give up. I gave up after the second time and appeals.’

A new approach to assessment

It is clear that there are anomalies in the current assessment processes for carer payments:

  • most assessments are based on level of care need and functional ability, regardless of medical condition or disability, except for Carer Payment (child) which uses a specific set of circumstances;
  • most assessment processes are identified in disallowable instruments, except for the Carer Payment (child) assessment, which is included in the Social Security Act 1991;
  • the inclusion of these assessment details in the Act severely inhibits the ability to make timely changes to keep up with technological or medical advances;
  • the purpose of Carer Payment (child) is to support carers who are engaged in the fulltime care of children with severe disability or medical conditions and as a result have no capacity to undertake other work, yet the assessment process for this payment does not require carers to describe or substantiate the level of care they are providing;
  • across the range of carer provisions, the health professionals who are able to verify a carer’s application vary: for Carer Payment (adult) a range of health professionals, usually with detailed knowledge of the care required and provided, can be used, while for Carer Payment (child) only a medical practitioner can verify the claim;
  • medical professionals may feel there is a conflict of interest between their roles as an advocate for their patient and as a verifier of claims for income support, with its consequent obligation to protect against improper use of public funds; and
  • the functional impact of mental health conditions is not covered in sufficient detail in any of the current assessment processes.

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To address these anomalies, the Taskforce is of the view that a new approach to assessment is required.

Most assessments relating to level of disability and/or the need for care use the activities of daily living (ADLs) as their base and are referred to as functional assessments. ADLs describe the ability of a person to function or carry out the activities that are fundamental for self-care, regardless of his or her medical condition or disability. They include factors such as mobility, communication, breathing, feeding, grooming, personal hygiene, and bowel and bladder function. The level of independence based on the functional assessment is used to indicate the level of care the care receiver requires and with what tasks.

To accurately assess the care needs of a child, and the carer’s subsequent capacity to support himself or herself through substantial workforce participation, it is essential to assess the full range of activities the carer is required to perform, not just the child’s level of dependence or independence in ADLs and his or her progress against developmental milestones. The development of a checklist describing the work of carers—perhaps expressed in a suite of‘activities of daily caring’, which builds on the activities of daily living—would enable explicit statements and assessments about the intensity and duration of care being provided.

In the view of the Taskforce, the development of an effective tool to assess the care reasonably required by children with severe disability or medical conditions is fundamental to any move to grant Carer Payment (child) based on care needs.

The principles on which such an assessment tool should be based would, in the Taskforce’s
view, include the following:

  • recognition of the need for consistent and equitable access to financial assistance for carers providing comparable levels of care to children with similar levels of disability, regardless of the nature of the disability;
  • the need for a process designed to be easier for carers, treating health professionals and often interested stakeholders to understand and use, which is administratively simpler and which:
    • provides documented evidence, both from the carer and the person verifying the claim, of the level of care required by the care receiver;
    • recognises the distinction between the parenting and care responsibilities for a child without a disability or medical condition and the additional caring responsibilities required for a child of comparable age as a consequence of a disability or medical condition;
    • provides a comprehensive assessment of the full range of activities of daily living and caring required to care for the child at home and in the community;be based on the usual or an ‘average’ of the child’s care needs over the course of a defined period;
    • provides an objective and quantifiable measure of the intensity and duration of the care being provided; and
  • consistency with other assessment processes involved in determining eligibility for financial assistance to carers in order to achieve, among other things, a smooth transition from child to adult payments.

Based on its experience with both the ADAT and the CDAT, FaCSIA has advised the Taskforce that it is confident a suitable assessment tool can be developed. The Taskforce has proceeded on that basis.

Given the critical importance of the assessment tool and having regard to the experience of some Taskforce members, the Taskforce acknowledges the need for an appreciation at all levels of the complexity of the task. It will be necessary to ensure that adequate time and resources are dedicated to the development and testing of the assessment tool. By way of example, an area of significant challenge is likely to be the assessment of the care needs of children under the age of three years.

In the context of developing the assessment tool, while some members of the Taskforce do have very relevant qualifications and experience, the Taskforce as such was not established, nor was it given the time, to advise on that development. However, it strongly recommends that professionals with expertise in assessment be consulted on the development of the tool, and a validation and testing phase involving carers, technical experts and skilled evaluators be undertaken.

Recommendation 19

The Taskforce recommends that a revised assessment process for Carer Payment (child) eligibility based on the level of care required by the child with disability or severe medical conditions and the amount of care actually provided by the carer be established through a disallowable instrument.

Recommendation 20

The Taskforce recommends that the Social Security Act 1991 be amended to give effect to Recommendation 19.

Recommendation 21

In implementing Recommendation 19, a new assessment tool should be developed that:

  • takes into account the level of care required for a child with severe disability or medical conditions;
  • has regard to the current Adult Disability Assessment Tool and Child Disability Assessment Tool processes;
  • is informed by existing standardised functional assessments appropriate for use with a paediatric population;
  • pays attention to cognitive and behavioural issues, as well as functional and special care needs; and
  • ensures any transitions from Carer Payment (child) to Carer Payment (adult) are easy and straightforward, particularly if the child’s condition and/or level of care need have not changed.

Recommendation 22

The Taskforce recommends that the assessment process allow carers to provide details on the amount and type of care they are providing.

Recommendation 23

The Taskforce recommends that the government review the allowable medical, health and other professionals who can verify claims for Carer Payment (child) and Carer Allowance (child).

Recommendation 24

The Taskforce recommends that recent evidence held by the carer that provides a sufficient level of detail about the child’s disability and/or medical condition be allowed to support a claim for payment.

45 A disallowable instrument is required to be tabled in both houses of Parliament within 15 sitting days of being made and can be disallowed by either house of Parliament. If an instrument is disallowed, it has the same effect as if it were repealed.

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Chapter 7: Relationship to Other Payments

The Taskforce considered the relationship of Carer Payment (child) to other income support payments and government financial assistance, including the possible need for short-term financial assistance in some circumstances.

Understanding the payment system

Carer Payment (child) and other social security payments

Carer Payment (child) is one element in Australia’s social security structure for providing for the needs of people who, as a result of their circumstances, require assistance in the form of income support.

In particular, Carer Payment (child) recognises that caring for a child or children with severe disability or medical conditions can be a full-time job that effectively prevents the carer from participating in the workforce but that is of great social and economic value to the community generally

The relationship of Carer Payment (child) to other income support payments—and in particular to those payments that impose obligations about workforce participation—must be recognised in any review of eligibility for Carer Payment (child).

More generally, the Taskforce was conscious of the fact that any social security system is a response to the needs and expectations of the society in which it operates. As such, and within the capacity of that society to meet those needs and expectations, it changes as they change. The Taskforce also recognised, however, that the system is part of the agenda of government for economic and social management. For those reasons, the elements of the structure need to be seen in the context of the likely developments in social welfare policy.

While the Taskforce recognised that those considerations were relevant to any long-term view about the place of Carer Payment (child) within the social security structure, it concluded that it had neither the time nor the remit to pursue them. However, to the best of its understanding, the findings and recommendations of the review are not inconsistent with current thinking about these issues.

Carer Allowance

It was evident from the submission process that carers in receipt of carer payments are not clear about which payment they are receiving. Many of those who provided submissions stated that they were receiving Carer Payment (child) when it was clear from the context that they were receiving Carer Allowance (child), or vice versa.

This confusion may have been compounded by the change in the payment titles and structures over time (see Appendix E for a history of carer payments). It may also be affected by the different forms and verification processes required for each payment.

The Taskforce had some difficulty in understanding why eligibility for Carer Payment does not automatically entitle the carer to Carer Allowance. It accepts that there are significantly more people receiving Carer Allowance than Carer Payment, possibly because Carer Allowance is not means tested and because there are different assessment methods for the two payments.For some reason, which the Taskforce was not able to establish to its satisfaction, not all Carer Payment recipients currently receive Carer Allowance. For example, it is estimated that around 90 per cent of those on Carer Payment (child) also receive Carer Allowance (child). Possible explanations of the discrepancy include the number of multiple carers—that is, where two carers are providing care for a child with very severe disability and are eligible for only one payment—or the fact that not all those on Carer Payment may be aware that they are also eligible for Carer Allowance.

The Taskforce questions how the considerable additional costs involved—for Centrelink in administering the applications, for medical and other health professionals in filling out yet another form verifying the condition, and for carers in attending and paying for these appointments when a form for Carer Payment has already been provided—can be justified. Carer Allowance is currently paid at the rate of $98.50 per fortnight, and the Taskforce was surprised that the Carer Allowance assessment process appeared to be more complex and time-consuming than the Carer Payment process. The Taskforce questions whether these inconsistent arrangements may be due to an accident of history rather than intended design features of the system.

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Recommendation 25

The Taskforce recommends that Carer Payment (child) recipients be automatically eligible for Carer Allowance (child).

Carer Adjustment Payment

As mentioned in Chapter 4, the Carer Adjustment Payment (CAP) is a new interim ex gratia payment available to assist families to adjust following a catastrophic event where a child up to six years of age is diagnosed with a severe illness or medical condition, or a major disability due to injury from an accident. At the time of writing, the CAP was due to cease on 30 June 2008.

The CAP is a one-off payment of up to $10,000, is not means tested and is available only to those who are not in receipt of an income support payment, such as Carer Payment (child). While the payment aims to assist families to adjust to their exceptional circumstances, there are no conditions on how the payment is to be used by successful applicants.

The Taskforce notes that many of the issues raised by those who have applied for CAP assistance—such as workforce participation and the financial impact of caring for children with severe disability or medical conditions—will be addressed in part by the recommendations of this review. In terms of ability to participate in the workforce, the Taskforce was of the view that there is little distinction in practice between those who are providing ongoing long-term care and those who are providing care due to a catastrophic event. CAP applicants often cited the additional medical and other costs associated with caring for their children, and the Taskforce has recommended that the government review the adequacy of financial supports for carers (see Recommendations 3, 7, 8, 9 and 10).

Parenting Payment and Newstart Allowance

The fact that Carer Payment (child) is paid because it is accepted that the carer is unable to engage in employment invites comparison with Parenting Payment. If parent carers are seeking income support assistance and are not eligible for Carer Payment (child), they are most likely to apply for Newstart Allowance or Parenting Payment. Both of these payments, however, may involve varying degrees of a mutual obligation to actively look for work, accept suitable work offers and undertake extra activities, such as training, to help with finding work.

The recent Welfare to Work initiatives introduced new arrangements for those in receipt of Parenting Payment (Single) and Parenting Payment (Partnered). At the time of the introduction of the Welfare to Work reforms, more than 600,000 people were in receipt of Parenting Payment or approximately 5.7 per cent of working-age Australians. Prior to Welfare to Work, arrangements for Parenting Payment meant that principal carer parents of school-aged children had virtually no requirement to look for work or participate in the labour force. Some participation requirements were in place only for parents whose youngest child was aged between 13 and 15 years.

Principal carers who were on Parenting Payment on 30 June 2006 are able to remain on this payment until their youngest child turns 16, subject to their continuing to meet the payment’s eligibility requirements. These parents are required to look for part-time work of at least 15 hours per week as part of their participation requirements from 1 July 2007 or when their youngest child turns seven, whichever is later.

Parents who claimed Parenting Payment (Partnered) after 1 July 2006 will move on to Newstart Allowance and be required to look for part-time work of at least 15 hours per week once their youngest child turns six.

Single parents applying for income support since 1 July 2006 are able to claim Parenting Payment (Single) only if their youngest child is under eight years of age. Once the child turns eight, they will need to apply for another payment, usually Newstart Allowance. These new claimants will need to look for part-time work of at least 15 hours per week as part of meeting their participation requirements, once their youngest child turns six.

This means single parents with young children have participation requirements when the youngest child turns six, but do not have to move off Parenting Payment (Single) and onto another payment (usually Newstart Allowance) until the youngest child is eight. Newstart Allowance may be available to those who are aged 21 or over, are under Age Pension age, are unemployed and prepared to enter into an activity agreement, and satisfy the participation requirements (in addition to meeting residency and means test requirements).

Participation requirements

Participation requirements for principal carer parents include the requirement to look for part-time work, attend all job interviews, take up suitable offers of paid employment, participate in training courses or programs and never leave a job, training course or program without a good reason. The activity agreement spells out the specific activities the person will undertake to meet these requirements.

Principal carer parents may be able to gain an exemption from their requirements if they are caring for at least one dependent child with a physical, intellectual or psychiatric disability or illness and the care needs of the child or children are such that the principal carer parent does not have the capacity to undertake 15 hours of paid part-time work per week.

Exemptions can be granted for up to 12 months, and parents can apply for one or more further periods of exemption, each of which cannot exceed 12 months. Parents need to provide Centrelink with a letter from their medical practitioner and from the school stating that the parent cannot participate in paid work because the parent needs to be constantly on hand or on call while the child is at school.

Data provided to the Taskforce indicate that around 7.2 per cent of principal carer parents receive Carer Allowance. Further, exemptions to care for a child with severe disability or medical conditions represent around 8.7 per cent of all exemptions received by principal carers, and most parents with this type of exemption are also receiving Carer Allowance (78 per cent). This indicates that for principal carer parents with a participation requirement there is a strong correlation between receipt of Carer Allowance and exemptions to care for a child with a disability and/or medical condition.

If the carer parent is in receipt of Carer Allowance (child), this is accepted as verification that the child has a disability; however, carers are still required to obtain verification from a treating health professional that the care load is such that it prevents the carer from undertaking the activities in their activity agreement.

If the child is of school age, a statement is also required from the child’s school that the principal carer needs to be always available to care for the child with disability. The Taskforce notes that this type of statement is not required for determining eligibility for Carer Payment (child).

Issues

Given that Carer Payment (child) and Parenting Payment both provide for the full-time care needs of a child, an issue for the Taskforce is whether there is a need for Carer Payment (child) before the child reaches the age of seven. Conversely it may be questioned why a carer who would qualify for Carer Payment (child) should not receive that payment rather than Parenting Payment which for some reason is paid at a lower rate, although in other respects, other than the age limitation, it is similar.

A related issue raised with the Taskforce is whether there is, or should be, a minimum age for a care receiver below which Carer Payment (child) should not be paid. This was suggested because of a perception that the care needs of an infant with a disability or medical condition may be more difficult to distinguish from the care needs of an infant of a comparable age.

This issue goes to the very heart of the rationale for Carer Payment (child), which is not paid because of the disability or medical condition but rather because of the care needs resulting from the disability or condition that prevent the carer from engaging in substantial workforce participation. It would seem, in the case of a very young child, that it may be difficult to establish that the requisite care needs resulted from a disability or medical condition, but the Taskforce sees no reason to arbitrarily preclude the possibility.

Carer Payment (child) is paid at a higher rate than Parenting Payment (Partnered) and Newstart Allowance and also has more generous means test limits. While the Taskforce was not asked to review the amounts paid, the evidence available from the consultation process regarding the adequacy of Carer Payment (child) would certainly not support any reduction.

There are less tangible but nonetheless important reasons why many carers feel strongly that they should receive Carer Payment (child). Those reasons include recognition of the worth of their caring role and its importance to the community and the desire to establish the special care needs of the child at an early age to insure against the perceived risks in transitioning to adult entitlements. This is contrasted with the difficulties in establishing an entitlement to Carer Payment (child), which result in applicants giving up on the application process even though they might, had they persevered, have qualified. In the view of the Taskforce, such a result for such a reason is simply unacceptable and demands changes along the lines recommended in this report.

The Taskforce also notes the additional difficulties created for parents of children with severe disability on Parenting Payment or Newstart Allowance through the participation requirements. Although the rules may be applied consistently, exemptions are applied on a case-by-base basis to ensure that there is appropriate flexibility to deal with individual circumstances. It is not clear whether this system is supporting carers in their caring role, and in the Taskforce’s view this issue could be examined further to establish the effects of participation requirements on parents of children with severe disability or medical conditions who are not eligible for Carer Payment (child) but who are receiving Carer Allowance (child).

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Recommendation 26

The Taskforce recommends that participation requirements for parent carers in receipt of Carer Allowance and a relevant income support payment be reviewed to ensure that verification requirements have greater regard to the individual circumstances of carers.

Transitions

A major issue identified in the submissions was the transition to Carer Payment (adult) and Carer Allowance (adult) once the care receiver turns 16 years of age, which involves a fresh application and in turn requires all the information already submitted to be provided yet again. While the Taskforce acknowledges that there may be a need for some re-assessment of eligibility, it questions whether a fresh application is the appropriate process.

For many care receivers neither their conditions nor their care needs are likely to change. Where it is medically assessed that improvement may take place to an extent that would impact on eligibility, this presumably can be identified and is unlikely to be a consequence of having a 16th birthday. Obviously there will be a need from time to time to ensure that the medical condition of the care receiver has not changed significantly, the carer is still providing the appropriate level of care, and the income and assets tests are still met, but those aspects too would not seem to be contingent on the child reaching the age of 16.

‘The [transition] from under 16 to over 16 is terrible. Centrelink must think that the illness mysteriously disappears because they don’t give the right information or paper[work] to be filled out. … I went a month without any income for my youngest. How am I supposed to support my son during this transition period?’

The significant change is presumably the entitlement of the 16-year-old care receiver to Disability Support Pension. Given the stringent tests of the disability or severe medical condition of the care receiver to qualify the carer for Carer Payment (child), it must be questioned whether the payment of Carer Payment (adult) on transition could not be automatic with a review, or at least simplified, unless there are reasonable grounds for believing that there may be a relevant change of circumstances.

The Taskforce is aware that the current assessment process for Carer Payment (child) is very different from the assessment used for Carer Payment (adult) and Carer Allowance (adult), which involves the use of the Adult Disability Assessment Tool (see Chapter 6 for additional information). The use of a different assessment tool is presumably the basis for the requirement for applicants to be reassessed. The Taskforce also acknowledges that if a care receiver applies for Disability Support Pension at age 16, he or she will be receiving a payment in his or her own right, possibly for the first time, and may therefore have to complete the relevant application forms.

In terms of transitions from Carer Payment (child) to Carer Payment (adult), it was noted above that in May 2007 around 250 people were in receipt of Carer Payment (child) for a child aged 15 and around 880 people were receiving Carer Payment (adult) for an adult child aged 16, which rose to over 1,000 for care receivers aged 17 years. While these numbers appear to indicate that the Carer Payment (child) eligibility criteria are far more stringent than those that apply to Carer Payment (adult), on closer inspection they may also indicate that some Carer Payment (child) recipients are having difficulty with the transition.

An analysis was done of the payments that were granted to a group of care receivers immediately after their 16th birthday. Of the 652 care receivers analysed, 477 (73 per cent) were granted Disability Support Pension, 92 (14 per cent) went onto Youth Allowance Student and 15 (2 per cent) onto Youth Allowance Jobseeker, no payment was applied for or granted in 46 cases (7 per cent) and the remaining 4 per cent went onto Abstudy, Mobility Allowance or Special Benefit.

Immediately prior to these care receivers’ 16th birthdays, their carers had been in receipt of payments as shown in Table 3.

Table 3: Carers—payments prior to transition
Payment type Number Percentage
Parenting Payment (Single) 271 41.5
Carer Payment (for child—who turned 16) 140 21.5
No payment 104 16
Parenting Payment (Partnered) 86 13
Disability Support Pension 11 1.7
Newstart Allowance 28 4.3
Wife Pension 5 0.8
Partner Allowance 1 0.2
Widows Allowance 2 0.4
Carer Payment (for additional child, not 16-year-old) 4 0.6
Total 652 100

Nearly 60 per cent of carers were in receipt of Parenting Payment or Newstart Allowance, with only 21.5 per cent of carers in receipt of Carer Payment (child) before their children turned 16 years of age. This indicates that, even though the children’s disabilities were severe enough to qualify them for Disability Support Pension when they turned 16, the stringent nature of Carer Payment (child) had prevented their carers from accessing the payment.

Recommendation 27

The Taskforce recommends that the transition from Carer Payment (child) to Carer Payment
(adult) be streamlined.

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Chapter 8: Differences Between Payments

In addition to the inconsistency in assessment processes noted above, the Taskforce became aware of a number of areas in which different approaches were evident across payments. The major areas on which this chapter focuses are reviews, terminal conditions, verification of claims by medical or health professionals and equitable access to Carer Payment (child).

Reviews

Most income support payment recipients are reviewed regularly to make sure that they are still eligible for payment. These reviews may cover medical details, circumstances and/or income and assets. The frequency and type of review conducted varies across payment types. The review processes for Carer Payment (child) and Carer Allowance (child) are complex and detailed—the information given below does not cover all the relevant elements but is a summary only. Of particular concern to the Taskforce is the variation and reported lack of coordination in review processes for these two payments, and the difficulty for clients and others in understanding the review processes.

Circumstance reviews are designed to:

  • ensure that the care receiver still has a significant level of disability;
  • ensure that the care receiver is still receiving constant care (Carer Payment) or daily care and attention (Carer Allowance) from the carer;
  • ascertain, in the case of Carer Allowance (child), whether care is being provided in the home of the carer and the care receiver; and
  • ensure that the income and asset test requirements continue to be met (Carer Payment only).

These reviews are conducted periodically at different times for both Carer Allowance (child) and Carer Payment (child). For Carer Allowance (child) customers, circumstance reviews are mostly conducted in conjunction with changes in Family Tax Benefit eligibility, although entitlement may be reviewed if a child stops living in the family home for more than 24 hours. For Carer Payment (child) recipients, circumstance reviews are conducted every two years, with the possibility of more frequent reviews for those who qualify on the basis that they care for two or more children with disability who have combined care needs that are at least equivalent to the level of care required by a ‘profoundly disabled child’.

A carer who states that the care receiver’s illness or disability has improved may be subject to a follow-up medical review.

Medical reviews ask the payment recipient to reaffirm the disability or medical condition. For these reviews, carers are sent a letter and new form to complete, including information that must be provided by a medical professional. This usually necessitates another visit to a medical professional, which may involve a significant cost to the carer in terms of both the financial expense and the time taken.

‘We were, however, puzzled at being reassessed by the department, at one stage at six-monthly intervals, for over two years. We were told we were being randomly assessed. Our doctor was very angry at being asked to again fill out forms … at the time we had to pay for extra long appointments as our doctor did not accept Medicare payments for our daughter.’

According to the Guide to Social Security Law, medical reviews for Carer Payment (child) are to be conducted biennially for carers of children who qualify as a ‘profoundly disabled child’, but in practice these reviews may not be conducted. Medical reviews are also to be undertaken every two years from date of grant when payment is made on the basis that the recipient cares for two or more children with disability with combined care needs that are at least equivalent to the level of care required by a child with a profound disability. The Guide to Social Security Law states that the biennial circumstance review for Carer Payment (child) is included as part of the medical review to ensure that the carer is still personally providing
constant care—but, again, in practice this may not occur.46

As mentioned in Chapter 3, Carer Allowance (child) medical reviews are conducted within 12 months of developmental milestones. These are:

  • three years and four months (if Carer Allowance (child) was granted before the child was two years old),
  • four years and eight months,
  • seven years,
  • 10 years,
  • 13 years, and
  • 15 years and nine months.

There are no periodic reviews for children below the age of three years and four months, as their condition is considered unlikely to improve significantly before they reach this age. Children with disabilities or medical conditions that appear on the Lists of Recognised Disabilities are subject only to a circumstance review at these developmental milestones.

Income and assets reviews are conducted for recipients of Carer Payment (child) in November each year, timed to ensure that carers have received their Tax Assessment Notices. These reviews ask carers to state their income and assets for the next financial year. Carer Allowance (child) recipients are not subject to means testing.

Terminal illness reviews are conducted to determine whether the care receiver is still alive. These reviews are to be conducted for both Carer Payment (child) and Carer Allowance (child) every six months after the grant. Due to the sensitive nature of these reviews, they are conducted as courtesy calls to see how customers are coping with their caring responsibilities and to check that their circumstances still qualify them for assistance.

The information sought differs from that sought during a circumstance review; the main questions asked concern whether constant care is still being provided to the care receiver.

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Issues

The Taskforce understands the necessity for reviews but notes the number of concerns and issues raised about them during the consultation process. The main issues identified in submissions were the number of reviews, the necessity for ongoing medical reviews of permanent disabilities or medical conditions, the time-consuming nature of reviews and the lack of sensitivity in the way reviews are conducted.

Although some reviews of circumstances may be conducted over the phone, time-poor carers often stated that reviews were onerous. This is compounded by:

  • circumstance and medical reviews not always happening simultaneously, as intended; and
  • reviews of Carer Allowance (child) and Carer Payment (child) not happening simultaneously.

In essence, carers receiving both payments may have multiple circumstance reviews and medical reviews in a short period of time. This situation is exacerbated by the fact that carers may not have a clear understanding of the distinction between the two payments.

Carers who care for more than one child with a severe disability or medical condition are subject to reviews for each child.

While it is acknowledged that medical reviews are an integral component of the income support system pertaining to carers and care receivers with a disability or severe medical condition, the use of developmental milestones as trigger points for Carer Allowance reviews can cause difficulties for parents and care givers.

As an example, a carer may care for two children with disability and receive one Carer Payment (child) payment and two Carer Allowance (child) payments. Within a short period of time, they may be subject to separate circumstance reviews for each of the Carer Allowance (child) payments and also for the Carer Payment (child) payment. Medical reviews, in particular, are stressful events for carers, particularly where the child’s disability or medical condition is not likely to change over time.

‘[You have to] explain your situation to different people over and over again. You have your child with you [and they are] listening to your conversations, which only reinforces messages that they have something wrong with them when we are trying to encourage as normal a response to life as possible.’

During medical reviews, carers are required to reaffirm the medical condition of the care receiver. To provide proof of the disability or medical condition requires carers to meet again with medical professionals to complete forms, which involves significant inconvenience and considerable cost to carers.

‘Our biggest concern during this time was the need to fill in forms explaining [the] condition and care requirements. Although this was not very often, the forms were long and required a doctor’s signature. Some medical conditions, and spina bifida is one, will never improve. From a parent’s position, I found this an unnecessary waste of time and money.’

The process adds to the already high demands on carers and exposes care receivers to unnecessary re-examination.

Transitions to school and high school for example, can be a particularly challenging and stressful time for parents of children with disability, who must undergo a number of detailed assessments as part of their introduction to the education system. A child may be required to have formal psychological testing prior to starting school to meet the requirements of the education system as well as an assessment to determine the level of assistance the child may require to participate in the classroom and in daily school routines. Reviews with allied health professionals such as occupational therapists, speech pathologists and early intervention nurses are common at this time. This may not, therefore, be the ideal time to conduct circumstance reviews for the purposes of Carer Payment (child), unless this information can be used as part of the review process.

The Taskforce notes that many of the issues regarding reviews will be resolved by the changes already recommended for the service delivery arrangements and assessment processes.

The Taskforce accepts that reviews are necessary but believes they should have minimal impact on carers. Ideally, review processes should be tailored to the situation of the client, so that where the care receiver’s disability or medical condition is not likely to change, medical reviews are not conducted. The Taskforce acknowledges that this may currently happen for Carer Payment (child) and that tailored arrangements are in place for Carer Payment (adult), where medical reviews are not conducted if a care receiver has a sufficiently high score on the Adult Disability Assessment Tool. Similarly, if a carer is providing short-term, episodic or shared care, the carer may be granted payment for a specific period of time, pending review of both the disability or medical condition and the carer’s circumstances.

In situations where carers are receiving both Carer Payment (child) and Carer Allowance (child), and/or receiving payments for multiple children with disability, reviews should be conducted concurrently to minimise the impact on the client.

Recommendation 28

The Taskforce recommends that an appropriate review regime be developed for carers receiving Carer Payment (child) and Carer Allowance (child).

Terminal conditions

As noted in Chapter 4, there are two ways in which carers of children with terminal illnesses may qualify for Carer Payment (child): first, where a medical practitioner certifies in writing that the child is in the advanced phase of a terminal condition—that is, the child is not expected to live for a period substantially greater than 12 months and will require continuous personal care for the remainder of his or her life because of the condition; and, second, where a medical practitioner certifies that the child meets either the medical or behavioural criteria for payment, one of which is that the child has a terminal condition for which palliative care has replaced active treatment.

To be eligible for Carer Payment (child), continuous personal care must be needed for six months or more. If, however, the child’s condition is terminal and the child’s life expectancy is less than six months, the requirement is for continuous personal care to be provided for the remainder of the child’s life.

For Carer Payment (adult) a terminal illness is ‘where a person is in the final phase of a terminal illness and is not expected to live for more than three months’. This definition is synonymous with the definition of terminal care and palliative care.47

In contrast, Disability Support Pension can be granted without the need for further assessment in certain limited cases where the claimant’s situation is ‘manifest’. One of the criteria for a ‘manifest grant’ of Disability Support Pension is that the person has a terminal illness with a life expectancy of less than two years, with a significantly reduced work capacity during that period. Another ‘manifest’ situation is where the claimant was assessed as a ‘profoundly disabled child’ for the purposes of Carer Payment (child).

The Taskforce could not discern the reason for these different levels of life expectancy across payment types. For the purposes of administering an income support system, the Taskforce questions the reason for, in one instance, defining a terminal condition as one with a life expectancy of less than three months while in another situation stating that it should be less than two years.

Role of health professionals

In the section on assessment processes (see Chapter 6), the role of health professionals in providing confirmation of and information about the care receiver’s condition and care requirements was outlined. For Carer Payment (child), the child’s treating doctor must complete a medical report form, which includes the medical, behavioural and terminal condition criteria specified in the legislation. For Carer Allowance (child), a different form containing the Lists of Recognised Disabilities and the Child Disability Assessment Tool— which includes a functional assessment of the child’s ability across a number of different domains—must be completed by the child’s ‘treating doctor’, described on the form as ‘a legally qualified Medical Practitioner who has supervised the child’s treatment’. This is called the ‘Treating Doctor’s Report’.

For Carer Payment (adult) and Carer Allowance (adult), the carer must arrange for a health professional assessment form to be completed, which can be done by a medical practitioner, registered nurse, occupational therapist, physiotherapist, member of an Aged Care Assessment Team or Aboriginal Health Worker (in a geographically remote area) currently involved in the treatment of the care receiver. It was noted above that certain groups of health professionals, particularly mental health professionals, are not well represented on this list.

Applicants for Disability Support Pension must get the doctor who normally treats them to complete a Treating Doctor’s Report, which is different from the Treating Doctor’s Report used for Carer Allowance purposes. For Disability Support Pension clients, the Treating Doctor’s Report does not need to be completed if:

  • the only disability is an intellectual disability and the person attends or has attended a special school and is able to provide a report from the school that indicates IQ, capacity for independent living and any other associated problems; or
  • the person is claiming on the basis of permanent blindness and is able to provide a report from an ophthalmologist; or
  • the person has been assessed as being a ‘profoundly disabled child’ and had a carer who was receiving Carer Payment up to the time the person turned 16 years of age.

The Disability Support Pension application form also asks for any additional doctors’ or specialists’ reports to be attached to the claim form and gives applicants the opportunity to nominate other people who can provide information about the disability, injury or illness, such as a counsellor, social worker, case manager, community health worker, teacher, psychologist, physiotherapist, or specialist other doctors.

For those applying for Sickness Allowance, an approved Centrelink Medical Certificate completed by their treating doctor must be attached to the claim form.

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Recommendation 29

The Taskforce recommends that, where appropriate, the government introduce a single treating doctor report/health professional assessment form.

Equitable access

Indigenous carers

In June 2007 there were around 150 Indigenous recipients of Carer Payment (child), which represents around 4.2 per cent of all Carer Payment (child) recipients; and 3,100 Indigenous recipients of Carer Allowance (child), or 2.9 per cent. According to the most recent Census, at 30 June 2006 the Indigenous estimated resident population of Australia was 517,200 or 2.5 per cent of the total population.

These figures seem to indicate that Indigenous Australians have equitable access to Carer Payment (child) and Carer Allowance (child); however, the health status of Indigenous Australians compared with the wider population should be considered in interpreting the data.

The ABS’s 2004–05 National Aboriginal and Torres Strait Islander Health Survey found that Indigenous people overall were almost twice as likely as non-Indigenous people to report their health as fair or poor and that this relative difference was apparent across most broad age groups. The survey also found that 44 per cent of Indigenous children aged 0–14 years had at least one long-term health condition and 9 per cent had multiple conditions.

These conditions included eyesight problems, total or partial hearing loss, asthma, kidney disease and diabetes. Indigenous Australians were admitted to hospital more often than non-Indigenous Australians across all age groups and were more than twice as likely to have visited the casualty or outpatient department of a hospital in the two weeks before the survey.

Inherent in Indigenous culture is the concept that family members and the community look after each other. Because of this, people often may not identify themselves as carers. There are also complex kinship roles and relationships that may impact on caring roles and responsibilities. This may mean they often miss out on services and supports to which they are entitled.48 The Taskforce recognises that the kinship or shared model of care has many benefits for the individual and the community but that this model of care is not well supported by the current system.

During the focus groups, the main issues identified for Indigenous carers were the difficulty in understanding the payments and the forms; language barriers and the ability to access interpreters; literacy skills; and access to resources, particularly health or medical resources, in rural or remote areas.

‘Most people say they won’t bother applying for Carer Payment (child) … they say it is just too hard, another fight they don’t want to have … they just apply for Carer Allowance (child) … it’s much easier to settle for the $98 allowance than go through the Carer Payment (child) hoops.’

The Taskforce is aware that verifying their identity can, for some people, be problematic due to lack of documents such as birth certificates and driver’s licences. Completing all components of the applications form can also prove to be difficult, with assistance often sought from health clinics or other services.

The infrequency of visiting doctors in remote areas makes completing the current medical report form difficult. Where forms are completed, submitting them in a timely manner can be difficult due to lack of postal services in many communities.

The Taskforce also recognises that Indigenous families are less likely to have a court order or even a less formal parenting plan in place, yet they still may have substantial caring responsibilities which preclude them from seeking employment.

Carers from culturally and linguistically diverse backgrounds

Around 23 per cent of Carer Payment (child) and 20 per cent of Carer Allowance (child) customers were not born in Australia.

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Table 4 provides information on Carer Payment (child) and Carer Allowance (child) recipients by country of birth.

Table 4: Carer Payment (child) and Carer Allowance (child) recipients Ranked by country of birth, June 2007
Carer Payment (child) recipients Carer Allowance (child) recipients
Country of birth Number % Country of birth Number %
Australia 2,740 76.7 Australia 87,340 80.0
United Kingdom 146 4.1 United Kingdom 5,105 4.7
Vietnam 85 2.4 New Zealand 2,343 2.1
Lebanon 81 2.3 Vietnam 1,712 1.6
New Zealand 71 2.0 Lebanon 1,265 1.2
Iraq 46 1.3 Philippines 916 0.8
China 35 1.0 China 663 0.6
Philippines 31 0.9 India 492 0.5
Turkey 19 0.5 Iraq 483 0.4
Afghanistan 18 0.5 Malaysia 371 0.3
Fiji 14 0.4 South Africa 371 0.3
Other 286 8.0 Other 8,057 7.4
Total overseas-born 832 23.3 Total overseas-born 21,778 20.0
Total 3,572 100.0 Total 109,118 100

Note: Excludes recipients who are eligible for the Child Health Care Card only.
Source: Centrelink administrative data, 2007.

The Taskforce recognises that similar barriers may exist for carers from culturally and linguistically diverse backgrounds to those facing Indigenous carers, including a perceived reluctance to seek help from beyond the family or community environment, language barriers and literacy issues.

Families from culturally diverse communities who have strong intergenerational and extended family ties have highlighted to the Taskforce the difficulties in being able to secure Carer Payment (child) for other family members due to their residency status or the household income, which may preclude eligibility.

While many of the issues facing carers will be addressed by the recommendations of the review in relation to the eligibility criteria, assessment process and service delivery, the Taskforce is concerned that the particular barriers confronting carers from Indigenous and culturally and linguistically diverse backgrounds may not necessarily be identified.

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Carers in rural and remote areas

Parents and other carers who live in rural and remote parts of Australia face particular barriers in accessing assistance, especially services. The need to travel long distances to find help adds not just to the cost of providing care and the costs of disability but also to the possible stress of organising other family members or friends to ‘mind the farm’ while carers are away. Although the cost of patient travel for those in isolated areas is subsidised to some extent, there are no special administrative arrangements for those in rural and remote areas to help them access, or maintain eligibility for, Carer Payment (child).

Recommendation 30

The Taskforce recommends that the government undertake further work to ensure that the barriers facing carers from Indigenous and culturally and linguistically diverse backgrounds in accessing Carer Payment (child) are recognised and addressed.

Recommendation 31

The Taskforce recommends that the government ensure there is effective access to Carer Payment (child) for carers in rural and remote areas.

46Guide to Social Security Law, subsection 6.2.5.51, ‘CP—Reviews (Child with a Profound Disability)’.

47 Ibid, subsection 1.1.T.85, ‘Terminal care and palliative care (CA) (CP)’, and 1.1.T.86, ‘Terminal illness (CA) (CP)’.

48 Carers NSW, media release, 9 October 2007.

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Chapter 9: Conclusions and Future Directions

In this report the Taskforce has made a series of recommendations that it considers to be practical and cost-effective options for extending Carer Payment (child) to provide an effective safety net for carers of children with severe disabilities or illnesses.

Key findings

In the Taskforce’s view, a well-designed system that meets its intended purpose is, by its very nature, cost effective. Implementing the Taskforce’s recommendations will ensure that Carer Payment (child) is well targeted, fit for purpose and administratively efficient in its operations, thereby improving its cost effectiveness. Because the payment must also be seen in the context of the broader supports available to carers, the Taskforce has recommended that government further examine financial and other supports for carers.

If accepted, the key recommendations of the Taskforce will lead to:

  • increased recognition for the valuable role of carers;
  • improvements to Carer Payment (child) administration, including an easier application process, revised eligibility requirements and better assessment of the care needed and provided;
  • more accessible information about payments;
  • enhanced service delivery for carers; and
  • increased support for workforce participation.

In the Taskforce’s view, there is an opportunity for national leadership in recognising the role of carers in the community through carer recognition legislation and the development of a national action plan for carers. Some state and territory governments have already been active in related areas and their experience could inform the way forward.

The Taskforce found there are many areas in which the administration of Carer Payment (child) could be improved. Access to Carer Payment (child) is currently very restricted, with around 12 per cent of applications resulting in a successful grant of payment. This is by far the lowest grant-to-application ratio of any income support payment available in Australia. The Taskforce expects that the recommended changes to the administration of the payment, particularly the assessment process, will result in an increased number of carers becoming eligible for payment. The Taskforce considers, however, that a resultant increase in recipient numbers would be a fair and equitable outcome as it is clear that the current assessment process is outdated and too limited in its application.

The current assessment process is based on section 197(2), (2AA) and (2A) of the Social Security Act 1991 and requires a child to meet the definition of a ‘profoundly disabled child’ for his or her carer to qualify for Carer Payment (child). To meet the definition, a very narrow set of circumstances must be met that, in the Taskforce’s opinion, does not accurately measure the level of care provided by the carer or needed by a child with severe disability or medical conditions. The assessment process also does not allow the carer to provide any details of the care they are providing.

The Taskforce is strongly of the view that a new approach to assessment is needed. This approach should systematically and comprehensively assess the full range of care needs of the child and activities of daily care performed by the carer and accurately distinguish the care required that is over and above regular care provided by parents for a child of the same age without disability. In the Taskforce’s opinion, this is an eminently reasonable and sensible basis on which to make decisions to grant Carer Payment (child). It would also bring the payment into line with the types of assessment used for Carer Payment (adult) and Carer Allowance (child). These processes could be made even more consistent if the definition of ‘profoundly disabled child’ were removed from the legislation and replaced with a disallowable instrument, similar in design to the instrument used for Carer Payment (adult).

In addition to amended eligibility criteria to recognise the level of care required and provided, the Taskforce has recommended the following administrative improvements:

  • provision for multiple care responsibilities equivalent to the care of a child with profound disability—for example, care of an adult and a child;
  • payment for short-term or episodic care situations;
  • removal of the limit on the allowable number of hospital admission days, subject to appropriate review;
  • recognition of shared care arrangements resulting from court orders or parenting plans; and
  • revised eligibility requirements and review arrangements in respect of terminal conditions.

The Taskforce also found that there was considerable confusion in the community about the difference between Carer Payment (child) and Carer Allowance (child): many recipients were unsure about which payment they were getting. The Taskforce has recommended that the government consider revising the names for the payments and provide clear and readily accessible information for applicants to ensure they are fully informed about the financial supports available to them. The Taskforce has also recommended that the government further examine the adequacy of current financial supports for carers and the relationship between Carer Payment (child) and other payments.

On the issue of workforce participation, the Taskforce is strongly of the view that those with responsibility for providing constant care to children with severe disability or medical conditions should not be required to satisfy participation requirements as part of their income support arrangements as they are, by definition, occupied full-time with their caring responsibilities. If people satisfy the care requirement for payment, they are making themselves available for care and in effect unavailable for full-time or substantial workforce participation.

The Taskforce is aware that the stringent nature of current Carer Payment (child) eligibility requirements has resulted in a number of people with intense caring responsibilities ending up on other forms of income support that require them to look for work, such as Newstart Allowance. This situation also applies to carers of people with episodic or short-term conditions where the care load is sudden or unpredictable. While in many cases carers may be able to gain exemptions from participation requirements, this issue illustrates the point that the current income support system does not easily deal with those whose ability to work may fluctuate because of their caring responsibilities. The Taskforce expects that the number of people in this position will increase as the effects of demographic change and the ageing of the Australian population become more apparent, with the number of people requiring care predicted to increase while the number of people available to provide the necessary care is predicted to decrease.

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An effective safety net

The integrity of the social security system as a whole is a major consideration for government. The Taskforce noted that there are opportunities for improving the way the system operates. The Taskforce has dealt with one small area of the system in reviewing Carer Payment (child), but the findings of the review could point the way to more far-reaching reforms for other payments—for example, Carer Payment (adult), Carer Allowance (child) and Carer Allowance (adult)—in areas such as eligibility assessment, professional verification of claims, the review regime, transitions between payment types, participation requirements, and streamlined administration.

The social security system operates as a safety net by providing protection from undue financial hardship and assisting those with the greatest level of need to meet the costs of living. In considering whether Carer Payment (child) was providing an effective safety net, the Taskforce recognised that it is necessary to look more broadly than at this one payment and consider its operations in relation to other social security payments. While some recommendations have been made to streamline the way Carer Payment (child) interacts with other payments, the Taskforce acknowledges that further work could be done to review other elements of the suite of assistance provided to carers—that is, Carer Payment (adult), Carer Allowance (adult) and Carer Allowance (child)—to ensure a more effective safety net for carers.

The needs of carers must be paramount in any consideration of the financial assistance and support the government provides to help them in their caring role. As noted above, the Taskforce has recommended that the government act to formally recognise the valuable role of carers in the community. In addition to carer recognition, the Taskforce canvassed the relative income position of carers and the higher costs they face. While government policy may not be able to reverse the impact of providing care for children with severe disability or medical conditions, it can help to lessen the impact in three ways:

  • by providing income support for those not able to support themselves through substantial workforce participation;
  • by assisting with the additional costs of care and costs of disability through subsidies— for example, for medical or transport costs;
  • by providing or subsidising services that assist carers and care receivers, such as respite and mobility assistance.

Carer Payment currently falls under the first of these points, and the Taskforce has touched on the second point especially as raised in the many submissions from carers and in light of other related payments.

The service support system is another significant area of complexity and many of the relevant issues concerning this system were raised in the recent senate inquiry into the funding and operation of the Commonwealth State/Territory Disability Agreement. The Taskforce therefore viewed this area as outside its terms of reference, but notes that it is an integral part of any system to improve assistance for carers and that many carers nominate access to services as the most important issue they face in maintaining their caring role.

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Conclusion

The consultation process conducted as part of the review generated more than 4,000 responses in the eight-week submission period. In its deliberations on ideas for improvement, the Taskforce was helped immeasurably by the many carers who took the time to contribute their thoughts and suggestions while balancing their responsibilities as carers. The wealth of material contributed through the submission process was an indispensable resource on which the Taskforce drew extensively in developing this report. In acknowledging the value of this information, the Taskforce notes that a number of the issues raised during the consultation phase were outside its terms of reference, but it expects that this material will be of great value to government and policy makers in future. In considering the future directions of the income support system, the Taskforce commends this material to government for further analysis and consideration of the issues it contains.

Recommendation 32

The Taskforce recommends that the issues raised in submissions to the review that were outside the Taskforce’s terms of reference be further considered by government.

The Taskforce considers that this report comprehensively addresses its terms of reference and that the report’s recommendations will, if implemented, result in numerous practical and cost-effective improvements to the structure and operations of Carer Payment (child). In the Taskforce’s opinion, the key to these improvements is the revised assessment process based on level of care and it commends further work on this topic to government, acknowledging that there is an opportunity for Australia to take the lead internationally in designing and implementing an assessment tool based on a well-researched suite of ‘activities of daily caring’.

The Taskforce also acknowledges that a cornerstone in any improved system of assistance and support must be choice and flexibility in the options available to carers.

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Appendix A - Carer Payment (child) Review Taskforce Members: Biographies

Mr Anthony S Blunn, AO (Taskforce Chair) has had a long and distinguished career with the public service including Secretary positions with the Departments of Territories and Local Government, Housing and Construction, and Social Security, and the Attorney General’s Department. Mr Blunn has also chaired a range of committees and inquiries in recent years.

Mr Brian Babington is Chief Executive Officer of Families Australia, Australia’s peak independent not-for-profit organisation representing the needs and interests of families. Brian is Deputy Chair of the Australian Council for Children and Parenting and President of ParentLine (ACT).

Mr Byron Davis is an Indigenous Australian. His great-grandfather is of Kalkadoon ancestry and his great-grandmother is of Wannyi ancestry from North-West Queensland. Byron is a teacher and has been a carer for most of his life.

Professor Stewart Einfeld is Professor of Mental Health in the Faculty of Health Sciences and Senior Scientist in the Brain and Mind Research Institute at the University of Sydney. Stewart’s research and clinical experience is in child and adolescent mental health, particularly developmental disorders such as autism and intellectual disability.

Ms Lois Gatley is a carer whose her professional background is nursing and social work. Lois’s career has included successive appointments to the Social Security Appeals Tribunal and she is currently the Chairperson of the Western Australian Government Carers
Advisory Council.

Mr Michael Gourlay has worked in the disability sector for many years and is the current Chief Executive Officer of the Association for Children with a Disability, which auspices the Australian Association for Families of Children with Disability.

Professor Frank Oberklaid is the Foundation Director of the Centre for Community Child Health at the Royal Children’s Hospital, Associate Director (Public Health) of the Murdoch Children’s Research Institute, and a Professor in the University of Melbourne’s Department of Paediatrics.

Ms Elizabeth Robinson is a carer for her daughter; she is the President of Novita Children’s Services Incorporated and a member of the National Disability and Carer Ministerial Advisory Council, and was recently appointed a Deputy President of the Guardianship Board in South Australia.

Ms Linda Webb, OAM was previously a senior public servant in the ACT and Commonwealth governments. Her areas of expertise include governance and community services, reflected by her OAM (awarded in 2002) for services to the ACT through public administration and social policy.

Ms Cate McKenzie is the FaCSIA representative on the Taskforce. She is Group Manager, Housing and Disability Group, responsible for a range of policies and programs dealing with carers, housing, people with disabilities, and mental health.

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Appendix B - Summary of Consultation Activities

Introduction

The Taskforce recommended a public submission process to be held in conjunction with focus groups and targeted consultations.

The target group for the consultation process included:

  • the general public;
  • parents and other carers of children with severe disability or medical conditions;
  • organisations that represent or assist children with severe disability or medical conditions and/or their parents and carers; and
  • professionals who provide services to children with severe disability or medical conditions and their representative bodies.

On 25 May 2007 the public submission process commenced. In order to ensure wide coverage, the review and the public consultation process were advertised in around 450 metropolitan, regional, rural, Indigenous and community newspapers across Australia from 26 May 2007.

Information and enquiries

A freecall number and dedicated email address were established to support the work of the review.

A link to the Carer Payment (child) Review webpage was established from the FaCSIA website. The webpage provided information regarding:

  • background of the review
  • terms of reference
  • public submission process
  • focus groups
  • contact information
  • fact sheets
  • the discussion paper for the review
  • template for submissions to the review.

These played a significant role in disseminating information, booking participants into focus groups and answering general queries. During the consultation phase, between May and August, more than 2,500 hits were recorded on the website, over 600 emails were received and phone calls exceeded 1,000.

Discussion paper and public submission template

A discussion paper was developed and widely distributed to provide an introduction to the review, an overview of the issues and a template for submissions. The discussion paper was disseminated by mail directly to more than 350 stakeholder organisations, distributed at all focus groups, available electronically on FaCSIA’s website, mailed to all members of parliament and distributed to all interested parties who contacted the free-call number or review email address.

In addition, the Chair of the Taskforce wrote to current Carer Payment (child) and Carer Allowance (child) recipients informing them of the review and the opportunity to participate in a focus group, and enclosed the template for submissions and a reply-paid envelope. This proved to be a successful mechanism for getting input directly from carers and resulted in a large number of submissions.

Public submission process

The public submission process was open for eight weeks and closed on 27 July 2007. Submissions sent via post and emailed after the closing date were accepted.

The Taskforce received 4,086 submissions, the majority of which were from individual carers. Organisations provided 23 submissions.

In many cases, the submissions included very personal accounts of families caring for children with a disability or medical condition. All of the submissions were read and analysed carefully, and they informed the Taskforce’s deliberations.

In conjunction with this report, a publication that focuses on the stories of some of the carers and their children who participated in the review has been developed. This is to honour the role of carers and develop understanding of carer circumstances and experiences in the wider community.

Focus groups

The Taskforce convened a series of focus groups around the country which were open to carers, organisations and any interested stakeholders. Participants were asked a series of questions formed from the discussion paper that drew out the issues surrounding Carer Payment (child) in addition to broader carer issues.

An independent consultant, Jenny Pearson of Jenny Pearson and Associates Pty Ltd, was engaged to conduct the focus groups.

Focus groups took place in the following locations:

Melbourne 4 held
Canberra 1 held
Wagga Wagga 1 held
Brisbane 3 held
Adelaide 3 held
Sydney 3 held
Hobart 1 held
Darwin 1 held
Perth 2 held
Townsville 1 held

Focus groups were organised for the following location; however, no participants attended:

  • Alice Springs

As some interested participants were unable to attend a focus group, the following telephone interviews and teleconference were conducted:

Telephone interviews with individual carers 3 held
Teleconference with individual carers 1 held

Copies of the discussion paper and fact sheets relating to Carer Payment (child), Carer Allowance (child), Carer Adjustment Payment and the Carer Payment (child) Review, and a template for submissions to the review were made available to all participants at the focus groups.

Targeted consultation

A number of targeted consultations were also conducted to complement the public focus groups. The structure of the targeted consultation was varied to suit the audience.

The following targeted consultations were conducted:

  • Indigenous specific—NPY Women’s Council and Disability Advocacy Service, Alice Springs
  • Ethnic specific—Multicultural Disability Advocacy Association, Parramatta
  • Centrelink Processing Centre, Wagga Wagga
  • Staff from Centrelink National Office and FaCSIA National Office—Staff from FaCSIA and Centrelink, Canberra
  • Paediatric Focus Group, Sydney
  • Occupational Therapist, Sydney.

The following targeted consultations did not proceed due to lack of interest:

  • General Practitioners Focus Group, Bundaberg and Melbourne.

The following teleconferences were conducted as targeted consultations:

  • Teleconference with the National Disability and Carer Ministerial Advisory Council
  • General Practitioner Teleconference, Bundaberg, Queensland.

Staff from FaCSIA were in attendance at all focus group and targeted consultation sessions as observers. Participants were not paid for their involvement. In total, 150 participants attended 19 focus groups and 8 targeted consultations.

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Appendix C - Summary of Consultation Themes: Extract from Report on the Consultations *49

This report presents material from electronic and hard copy submissions from individuals and organisations (disability groups, hospitals, professional organisations, advocacy groups and health services), and focus group transcripts.

The circumstances of carers are determined by the resources and time required to care for their children; social connectedness; sleep and physical health of parents; capacity for workforce participation; impact on other family members; and need for and access to services and support. Children with physical disabilities will often be totally dependent on their carer for all aspects of their life. Children with intellectual disabilities may require the carer to constantly monitor their behaviour as well as provide assistance with schoolwork. Terminally ill children need carers to advocate on their behalf with medical staff, nurse them through long stays in hospital as well ensure their ongoing treatment is maintained at home.

Eligibility criteria for payment are described as very strict. Analysis of 2004–06 data— conducted by an organisation that made a submission to the Review—shows that 11.7 per cent of applications in 2005 and 12.1 per cent of applications in 2006 for Carer Payment (child) were accepted. The carers whose children’s disabilities are not considered to be‘profoundly severe’ believed that a standard form used for determining the severity level is inadequate to assess their financial, emotional and physical hardships. Those who are caring for children with psychiatric conditions feel that their children are denied such financial assistance because their disabilities are not recognised as such by CDAT definitions. Yet children less than 6 years old are capable of demonstrating behavioural problems (such as damaging property) and can be subject to such disciplinary measures as expulsion from child care. Carers of children with epilepsy and asthma argued that the caring needs of their children are not recognised.

Parents with children with terminal or degenerative illnesses are of the view that reviews for terminal conditions should only be conducted every 12 months instead of every 3 months. The majority of carers who discussed this issue are overwhelmingly unhappy about the lack of integration between Carer Payment (child) and Carer Payment (adult).

Currently the two are treated as separate processes, whereby termination of CP (child) once their child turns 16 requires the carer to submit an application for CP (adult). Carers are emphatic that children continue to require care beyond age 16 and the lack of integration between the two kinds of payment, combined with the overall complexity of the application process places an additional burden on the carer.

Numerous issues arose regarding access to and quality of service delivery from Centrelink. In particular, respondents experienced difficulties in gaining access to information, reporting misinformation from Centrelink staff, confusion about the difference between the Carer Allowance (child) and Carer Payment (child), eligibility, reassessments and appeals, and inconsistency in assessments. The impact of reassessments on families where children have a lifelong disability is a very strong theme.

For carers ineligible for Carer Payment (child), there were a number of concerns. These can be summarised as:

  • Disease or Syndrome is not on the list.
  • Time involved in care is not taken into account. Cognitive functioning and physical ability do not necessarily relate to the level of care required.
  • The existence of more sophisticated treatments means improved prognosis for once terminal diseases. However, treatments are costly and often involve a high burden of care. Doctors and other health workers report a dilemma of wanting to maintain treatment optimism (treatment may be successful) while also facilitating material support for parents (Carer Payment [child] is currently only available for children in the end stages of terminal disease).
  • Children born here of foreign parents are ineligible for support because [they are] ineligible for citizenship.
  • Income levels for assessment do not take into account the extra costs incurred in having a disabled child.
  • Perceived lack of consistency in assessment process, where some get payments yet others do not, despite the similarity in circumstances.

Care arrangements other than full-time care by biological parents are often more difficult to sustain in the existing service system and level of payments. Episodic and shared care between separated families is associated with cost and complexity. A majority of foster carers received payments and allowances from State Government departments. However, many carers deemed the payments as insufficient. A majority of carers felt that the payment did not account for the time and constant supervision spent looking after their foster children. Furthermore, despite financial assistance, many of the foster parents faced financial hardship. Submissions from grandparents … indicate that grandparents are often disconnected from information and support. A few submissions discussed situations where custody was being disputed between parents and grandparents, with implications for who received the Carer Payment (child). Many expressed concerns about their impending retirement and how they would manage.

The cost of caring for children with disabilities is substantial. Parents often struggle with the extra costs involved in raising children with disabilities, including: medication, special diets and supplements, mechanical equipment (e.g. wheelchairs), home modifications, tests and medical appointments, appointments with therapists, travel and transport, supported accommodation, hiring of babysitters or home workers.

Most parents receiving the Parenting Payment suffered severe financial hardship. Financial hardship also correlated strongly with high stress levels of the parents. A majority of parents could not afford basic living essentials such as food, bills and clothes.

Other issues that face carers include the time and resources associated with school-age children, especially education and access to school-related services. Carers reported considerable amounts of time involved in keeping their children at school, interfering with their ability to undertake paid work.

49 Extract from FaCSIA, Review of Carer Payment (child) Report on the Consultations, November 2007. Note; The Taskforce does not accept responsibility for the accuracy of information contained in this extract.

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Appendix D - Carers in Australia: Statistical Summary

This summary draws on data from the Australian Bureau of Statistics’ Survey of Disability, Ageing and Carers from 2003 and Centrelink administrative data 2007. It also summarises information presented in the Review of Carer Payment (child) statistical summary of children with disabilities and their carers and the Carer Payment and Carer Allowance populations, which has been produced as a companion document to this report.

In 2003 an estimated 165,300 children had severe or profound core activity limitations (4.3 per cent of all children). There were approximately 54,600 primary carers of children with severe or profound core activity limitations.

At June 2007, there were around 3,570 Carer Payment (child) recipients, accounting for approximately 3.1 per cent of all Carer Payment recipients (116,600 recipients). Around 91 per cent (3,234) of these Carer Payment (child) recipients also received Carer Allowance (child).

Around 85 per cent of Carer Payment (child) recipients were female, compared to 67 per cent of all Carer Payment recipients.

Carer Payment (child) recipients were younger than all Carer Payment recipients. Carer Payment (child) recipients were most commonly aged 35–44 years (47 per cent), while Carer Payment recipients overall were most commonly aged 55–64 years (36 per cent).

The proportion of Carer Payment (child) recipients out of all Carer Payment recipients varied across the states and territories. Nationally, Carer Payment (child) recipients accounted for 3.1 per cent of all Carer Payment recipients. The Australian Capital Territory (4.6 per cent) and Queensland (3.7 per cent) exceeded this proportion, while New South Wales (2.8 per cent) and Western Australia (2.9 per cent) fell below it.

The proportion of Carer Payment (child) recipients who were married or de facto (63 per cent) was comparable to that of all Carer Payment recipients (65 per cent). A lower proportion of Carer Payment (child) recipients were single (8 per cent compared to 17 per cent). A higher proportion of CP (child) recipients were divorced or separated (28 per cent compared to 15 per cent). There was also a lower proportion of widows among Carer Payment (child) recipients (1 per cent) compared to all Carer Payment recipients (3 per cent).

There were around 150 Indigenous recipients of Carer Payment (child) and around 4,090 Indigenous recipients of Carer Payment in total. Indigenous recipients accounted for 4.2 per cent of Carer Payment (child) recipients and 3.5 per cent of all Carer Payment recipients.

Around 95 per cent (3,390) of Carer Payment (child) recipients cared for one child only, 4 per cent (160) cared for two children and the remaining 1 per cent cared for three or more children.

A higher proportion of Carer Payment (child) recipients were born in Australia (77 per cent) compared to all Carer Payment recipients (64 per cent).

The majority of Carer Payment (child) recipients had been on the payment for one year or less (47 per cent), compared to 37 per cent of all Carer Payment recipients. It should be noted that there were additional behavioural criteria introduced on 1 July 2006 that allowed more people to claim the payment.

A lower proportion of Carer Payment (child) recipients (42 per cent) were homeowners compared to all Carer Payment recipients (49 per cent).

In previous financial years (2004–05 and 2005–06), 12 per cent of Carer Payment (child) claims were granted. In 2004–05 the most common reason for rejection (73 per cent of rejections) was that the child did not meet the definition of a ‘profoundly disability child’.

The grant rate for Carer Payment (child) is much lower than for Carer Payment and other payments. The grant rate for all Carer Payment recipients was 66 per cent in both 2004–05 and 2005–06.

Around 80 per cent (93,600) of Carer Payment recipients received the maximum rate of payment in June 2007. In comparison, approximately 73 per cent of Carer Payment (child) customers in May 2007 received the maximum rate of payment.

At June 2007 there were around 3,860 children and 129,300 adults receiving care from Carer Payment recipients.

Around 64 per cent of children receiving care were male, compared to 51 per cent of adults receiving care.

The proportion of children receiving care varied across the states and territories. The states or territories with the highest proportion of children receiving care were the Australian Capital Territory (4.5 per cent) and Queensland (4.0 per cent). Conversely, children accounted for 2.9 per cent of care receivers in New South Wales.

The most common medical condition for males and females under the care of Carer Payment (child) recipients was severe multiple mobility disability (18 per cent of males and 27 per cent of females). For boys, the next most commonly reported conditions were autistic disorder (17 per cent) and attention deficit/hyperactivity disorder (17 per cent). For girls, the next most commonly reported conditions were IQ less than 55 (13 per cent) and autistic disorder (9 per cent).

At June 2007 there were around 109,100 Carer Allowance (child) recipients, accounting for approximately 28 per cent of all Carer Allowance recipients (393,300 recipients). There were around 129,300 children and 292,491 adults receiving care from Carer Allowance recipients (a total of 421,800).

For children under the care of Carer Allowance (child) recipients, for males the most commonly reported medical conditions were attention deficit/hyperactivity disorder (18 per cent), learning disability (17 per cent) and autistic disorder (17 per cent). For females the most commonly reported conditions were learning disability (17 per cent), attention deficit/hyperactivity disorder (10 per cent) and IQ less than 55 (8 per cent).

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Appendix E - History of Government Financial Assistance for Carers

Carer payment history

1983 Spouse Carer Pension introduced for men caring for their wives receiving Age Pension or Invalid Pension for an extended period (wives in similar circumstances were eligible for Wife Pension).
1985 Carer Pension replaced Spouse Carer Pension and extended eligibility to
other relatives.
1987 Carer Pension no longer payable overseas unless under an international agreement.
1988 Carer Pension expanded to include non-relative carers.
1989 Carer Pension extended for seven paydays after the care recipient’s death.
1990 Carer Pension extended to people living near or adjacent to the care recipient’s home.
1993 Carer Pension recipients given access to Jobs, Education and Training (JET)
program; earnings credit; eligibility relaxed to include those able to work, study or train for up to 10 hours per week; increased temporary cessation of care from 28 to 42 days per year allowed.
1996 Carer Pension extended to those caring for persons not in receipt of income support but with limited means; requirement to live in adjacent home removed; continuation of payment for 14 weeks after care recipient institutionalised.
1997 Carer Pension renamed to Carer Payment. Number of permitted temporary cessation of care days increased from 42 to 52 per year; hours a carer is permitted to cease providing constant care to work, study or train, etc. increased from 10 to 20 hours a week.
1998 Carer Payment extended to persons caring for profoundly disabled children under 16 years; temporary cessation of care days increased to 63 days per year.

Extension of Carer Payment to carers of two or more disabled children who
individually would not qualify the carer for this payment as ‘profoundly
disabled child’.

1999 New method of assessing an adult’s disability for Carer Payment (adult)—the Adult Disability Assessment Tool (ADAT)—introduced.

Carer Payment number of permitted temporary cessation of care days set at 63 days in a calendar year plus an extra 63 days in a calendar year if the person being cared for is in hospital.

Introduction of an extension of qualification for Carer Payment for carers who care for an adult with a disability and the adult’s dependent child, where the child is under six years of age, or is aged six to 15 (inclusive) and qualifies their his/her for Carer Allowance (child).

Extended qualification for Carer Payment bereavement payment on the death of a partner who was not receiving a social security benefit.

2002 Eligibility for Carer Payment extended to carers of children with a terminal illness who receive active treatment.
2004 Government announced a one-off Carer Bonus of $1,000 to eligible recipients of the Carer Payment and $600 to recipients of Carer Allowance for each care receiver.
2005 Hours a carer is permitted to cease providing constant care to work, study or train, etc. increased from 20 to 25 hours a week.

The government announced a one-off Carer Bonus of $1,000 to eligible recipients of Carer Payment and $600 to recipients of Carer Allowance for each care receiver.

2006 Eligibility for Carer Payment (child) extended to carers of children with severe intellectual, psychiatric and behavioural disabilities.

The government announced a one-off Carer Bonus of $1,000 to eligible recipients of Carer Payment for each care receiver.

2007 Health Care Card extended to full-time students aged 16 to 25 years who have a disability or severe medical condition who previously qualified their carer for Carer
Allowance (child).

The government announced the Child Disability Assistance Payment of $1,000 per year over five years to parents/carers of children under 16 years who qualify their parent/carer for payment of Carer Allowance (child).

The government announced a one-off Carer Bonus of $1000 to eligible recipients of Carer Payment and $600 to recipients of Carer Allowance for each care receiver. In addition, recipients of Carer Allowance who also received Wife Pension or the Department of Veterans’ Affairs Partner Service Pension received an additional $1,000.

Carer Payment (child)

Pre-1997 In the years prior to 1997, the government received correspondence and submissions from, and on behalf of, people who provided intensive care to children
under the age of 16 with a profound disability.

Many carers in this situation received an alternative payment (usually Parenting Payment or Special Benefit). However, these payments did not necessarily address the circumstance of a person providing intensive, full-time care to a profoundly disabled child. Relative to Carer Payment, these payments had more restrictive means tests, had less access to pharmaceutical benefits and other concessions, and were often paid at a lower rate.

1998 Carer Payment eligibility was extended to carers of children with a profound disability on 1 July 1998. Previously, Carer Payment had only been available to carers of people aged 16 and over. The Carer Payment was also extended in 1998
to carers of two or more disabled children who individually would not qualify their carer for the payment/meet the definition of profoundly disabled child, but
whose combined care requirements would be equivalent to that of a profoundly disabled child.

The objective of the measure was to make Carer Payment available to carers of children whose disabilities are so severe that they require care at the highest and most intensive levels, and where carers, often both parents, are consequently precluded from substantial workforce participation.

The description of the measure when it was introduced was as follows:

This measure recognises that the nature of care giving situations for children with profound disabilities is such that they are long term, intensive, often terminal and
are likely to otherwise necessitate institutionalisation. The level of care required is often such that two parents provide the necessary care, with each facing severe barriers to work.

Descriptors and criteria of the medical conditions and functional dependencies which would capture the care needs of the target group were developed in consultation with customer and treating professional reference groups and Centrelink social workers. The original legislated eligibility criteria required that the
child have a severe multiple disability, or a severe medical condition and, because of that disability or condition, need continuous personal care for a minimum of six months, unless the child’s condition was terminal. In addition, the child’s disability or condition had to include at least three of seven specified circumstances. (These criteria remain today as listed in section 197(2) of the Social Security Act 1991.)

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Previous reviews of Carer Payment (child)

1999 A review of the profoundly disabled child measure used to determine eligibility for Carer Payment (child) was conducted in 1999. The review considered a number of issues raised in submissions from individuals and organisations. These issues
included concerns that:
  • the medical eligibility criteria placed too strong an emphasis on medical
    care requirements and functional care requirements should be given
    more recognition;
  • one of the eligibility criteria which specified faecal incontinence day and night was too restrictive;
  • the criterion relating to children with terminal illness precluded those children with terminal conditions who received active treatment up to the time of their deaths;
  • general practitioners may have difficulties in diagnosing profoundly disabled children under the criteria and legislative terminology in use at that time; and
  • some children with multiple disabilities and/or severe behavioural problems associated with disabilities were failing to qualify for the payment.

A reference group considered whether suggested amendments to the legislative definition of ‘profoundly disabled child’ would address the concerns raised in stakeholder submissions, be consistent with the policy intent of the measure and
provide for the inclusion of profoundly disabled children only.

The 1999 review reference group also considered whether discretion to grant Carer Payment (child) should be available through the Secretary of the Department or through an assessment panel, in circumstances which indicated that a child
substantially met the criteria of the profoundly disabled child definition but did not actually qualify.

Another point the reference group discussed was the possibility of adapting eligibility criteria from other payments, for example, using a high CDAT score [the assessment tool used for determining qualification for Carer Allowance (child)] as
a qualification criteria for Carer Payment (child). Use of a list of manifest conditions that would automatically qualify a child was also discussed.

2002 In November 2002, eligibility for Carer Payment (child) was extended to carers of children with a terminal illness who receive active treatment.
2005 In late 2005, a reference group was tasked with extension of the Carer Payment (child) eligibility criteria to include children who require constant care or supervision because of unsafe or challenging behaviour due to severe intellectual, psychiatric and behavioural disabilities.

The reference group faced particular challenges in defining behaviours that would be specific to the intended target group. A detailed report tracked the options that were considered.

2006 The subsequent extension of Carer Payment (child) eligibility was implemented on 1 July 2006 (see section 197(2AA) of the Social Security Act 1991).

Carer Allowance

1974 Handicapped Child Allowance (HCA) was introduced from 10 December 1974. Distinction was made as to the degree of disability and an income test applied in some cases.
1978 HCA became payable in respect of students aged 16–24 years from 31 October 1978. For ‘severely handicapped’ children in the family home HCA was payable, free of an income test, to customers providing constant care and attention. For
‘handicapped’ children an income test applied and it was determined whether the customer was subject to severe financial hardship by virtue of the care and attention required by the child’s disability.
1987 Child Disability Allowance (CDA) replaced HCA from 15 November 1987. When CDA was introduced no distinction was made as to the degree of disability and no income test applied. Eligibility was based on the requirement that the child
required substantially more care and attention because of his/her disability or medical condition.
1993 The number of permitted temporary cessation of care days was increased from 28 to 42 per year.
1998 On 1 July 1998 the Child Disability Assessment Tool (CDAT) was introduced as part of the eligibility assessment for CDA. The number of permitted temporary cessation
of care days was increased from 42 to 63 per year. From 1 July 1998 CDA Health Care Card eligibility was extended to carers who did not qualify for CDA but who provided, on a daily basis, a level of care and attention that was substantially more than that needed by a young person of the same age who did not have a physical, intellectual or psychiatric disability.
1999 Carer Allowance (CA) was introduced on 1 July 1999. CA combined CDA and
Domiciliary Nursing Care Benefit (DNCB). DNCB was administered by the Department of Health and Aged Care and was paid to carers of adults who required a nursing home level of care. All DNCB customers were transferred to CA. CA is the responsibility of FaCSIA and is delivered to the community by Centrelink.

The Adult Disability Assessment Tool (ADAT) was introduced on 1 July 1999 to assess eligibility for Carer Allowance and Carer Payment for carers of people aged 16 years and over.
2002 Amendments to the CDAT resulting from a 1999 review of its effectiveness were implemented on 1 January 2002. Four special care needs criteria were added to take into consideration assessment issues for children with chronic conditions where the effects of those conditions may be variable. A number of minor amendments to refine the operation of the tool were also implemented.
2004 The government announced a one-off Carer Bonus of $600 to eligible CA recipients.From 1 September 2004, CA eligibility was extended to carers who did not live with the person they were providing substantial levels of personal care to on a daily basis.
2005 The government announced a one-off Carer Bonus of $600 for recipients of Carer Allowance for each eligible care receiver. The government also announced that from 1 July 2006 the backdating provisions for CA would be reduced to 12 weeks for carers of adults (formerly 26 weeks) and children (formerly 52 weeks).
2006 The government announced a one-off Carer Bonus of $600 for recipients of Carer Allowance for each eligible care receiver. The government also announced the inclusion on the CA Lists of Recognised Disabilities of Diabetes Mellitus Type 1 for children under 10 years of age.
2007 The government announced a one-off Carer Bonus of $600 for recipients of Carer Allowance for each eligible care receiver. Recipients of Carer Allowance who also received Wife Pension or the Department of Veterans’ Affairs Partner Service
Pension received an additional $1,000.

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Appendix F - Extract from the Social Security Act 1991

197(2) A child is a profoundly disabled child if:

(a) the child has either:

(i) a severe multiple disability; or

(ii) a severe medical condition; and

(b) the child, because of that disability or condition, needs continuous personal care for:

(i) 6 months or more; or

(ii) if the child’s condition is terminal and the child’s life expectancy is less than 6 months—the remainder of the child’s life; and

(c) the child’s disability or condition includes 3 or more of the following circumstances:

(i) the child receives all food and fluids by nasogastric or percutaneous enterogastric tube;

(ii) the child has a tracheostomy;

(iii) the child must use a ventilator for at least 8 hours each day;

(iv) the child:

(A) has faecal incontinence day and night; and

(B) if under 3 years of age, is expected to have faecal incontinence day and night at the age of 3;

(v) the child:

(A) cannot stand without support; and

(B) if under 2 years of age, is expected to be unable to stand without support at the age of 2;

(vi) a medical practitioner has certified in writing that the child has a terminal condition for which palliative care has replaced active treatment;

(vii) the child:

(A) requires personal care on 2 or more occasions between 10 pm and 6 am each day; and

(B) if under 6 months of age, is expected to require care as described in subsubparagraph (A) at the age of 6 months.


197(2AA) A child is a profoundly disabled child if:

(a) the child has either:

(i) a severe intellectual, psychiatric or behavioural disability; or

(ii) a severe intellectual, psychiatric or behavioural medical condition; and

(b) the child, because of the disability or condition, needs continuous personal care for:

(i) 6 months or more; or

(ii) if the child’s condition is terminal and the child’s life expectancy is less than 6 months—the remainder of the child’s life; and

(c) the child is at least 6, and under 16, years of age; and

(d) because of the child’s disability or condition, the child does one or more of the following:

(i) repeatedly engages in dangerous behaviour that is, or that gives rise to, a significant risk (whether immediate or long-term) to the child’s health or safety and that, without carer intervention, would result in the child suffering sustained tissue or bodily damage, or death;

(ii) repeatedly engages in aggressive or violent behaviour that is, or that gives rise to, a significant risk to the health or safety of others, or that results in significant property damage, as a result of which the child is regularly or permanently excluded from community programs, activities, services or facilities;

(iii) repeatedly engages in severe sexually deviant or sexually inappropriate behaviour, as a result of which the child is regularly or permanently excluded from community programs, activities, services or facilities.

197(2A) A child is a profoundly disabled child if a medical practitioner has certified in writing that:

(a) the child:

(i) has a terminal condition; and

(ii) is in the advanced phase of that condition; and

(b) either:

(i) the child has a life expectancy measured in weeks or months; or

(ii) it is possible that the child will live for more than 12 months but unlikely that he or she will live for a period substantially greater than 12 months; and

(c) because of the condition referred to in paragraph (a), the child will need continuous personal care for the remainder of his or her life.

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Appendix G - Summary of Carer Payment (child) Eligibility

The carer must:

  • provide care for a ‘profoundly disabled child’ in the child’s home (see below for definition of ‘profoundly disabled child’); and
  • provide personal care for a ‘significant period’ every day, generally expected to be for the equivalent of a normal working day

The child must:

  • meet one of the following sets of criteria to be considered a ‘profoundly disabled child’ (i.e. A or B or C).
A. Child with a terminal illness A medical practitioner has certified in writing that the child:
  • has a terminal condition and is in the advanced phase of that condition,

AND

  • has a life expectancy not substantially greater than 12 months,

AND

  • will need continuous personal care for the remainder of his or her life.
B. Child with a severe multiple disability or medical condition The child has a severe multiple disability or medical condition,

AND

  • because of that disability or condition, needs continuous personal care for a minimum of 6 months,

AND

  • the child’s disability/condition includes at least 3 of the following:
    • dependent on feeding through a tube,
    • has a tracheostomy,
    • must use a ventilator for at least 8 hours a day,
    • has faecal incontinence day and night if aged 3 or over, or expected to have faecal incontinence when aged 3,
    • cannot stand without support if aged 2 or over, or expected to be unable to stand without support when aged 2,
    • has a terminal condition for which palliative care has replaced active treatment,
    • requires personal care on 2 or more occasions between 10 pm and 6 am each day and is expected to need it at the age of 6 months.
C. Child with a severe intellectual, psychiatric or behavioural disability/medical condition The child is aged at least 6, and under 16, years of age, and has a severe intellectual, psychiatric or behavioural disability/medical condition,

AND

  • needs continuous personal care for 6 months or more because of the disability or condition,

AND

  • does one or more of the following:
    • repeatedly engages in dangerous behaviour that is a significant risk to his or her health or safety,

    OR

    • repeatedly engages in aggressive or violent behaviour that is a significant risk to the health or safety of others, or that results in significant property damage,

    OR

    • repeatedly engages in severe sexually deviant or sexually inappropriate behaviour, as a result of which the child is regularly or permanently excluded from community programs, activities, services or facilities.

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Appendix H - Carer Information Needs50

Centrelink recently commissioned research into the communication and information needs of carers. Some of the key findings are summarised below.

  • There is a strong demand for personal advice and practical assistance, not only from Centrelink but also from agencies and others.
  • Many carers, particularly carers from ethnic groups and Indigenous people, need handson assistance understanding information, completing forms and seeking help. Some carers state they simply could not cope on their own.
  • Most carers were poorly informed, irrespective of the time they had been a carer, their circumstances and the types of payments they received.
  • Many carers were struggling to cope, and there was evidence of stress and withdrawal in a number of cases, which compounds their lack of information seeking and knowledge.
  • When first becoming a carer, few carers approach Centrelink, and in fact may not recognise they have become a ‘carer’. At this point, main information needs are that financial assistance may be available, recognising their important role as carers and that other practical support may be available. Various impediments to receiving help were evident.
  • Once in receipt of Carer Payment or Carer Allowance, main information needs are the circumstances that affect benefits like hospitalisation, respite, working and holidays, as well as how to access support services.
  • Few understood their obligations as beneficiaries, the conditions of payments, or what support services were available such as respite, home help and domiciliary care.
  • There was limited demand for any electronic media.
  • A range of communication media were suggested including visual materials and radio, with a key communication objective being for carers to initially contact Centrelink.

Centrelink research and consultation with carers through ‘value creation workshops’ identified that carers are more open to information sharing and networking with each other in a face-to-face environment.51

50Information from Centrelink, 2007 (used with permission).

51It is the Taskforce’s view that the FaCSIA initiative ‘My Time’ could be used as a starting point in developing an important networking and communication channel for carers. For more information, visit My Time.

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