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Acknowledgments | Letter to the Minister

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.’

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:

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:

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.’

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):

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:

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

Letter to the Minister