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

Acknowledgments | Letter to the Minister

Contents

• Executive Summary
• Recommendations
• Chapter 1: Introduction
• Chapter 2: Community Engagement
• Chapter 3: Context
• Chapter 4: Challenges and Critical Roles of Carers
• Chapter 5: Carer Payment (child) Eligibility
• Chapter 6: Assessing Care Requirements
• Chapter 7: Relationship to Other Payments
• Chapter 8: Differences Between Payments
• Chapter 9: Conclusions and Future Directions
• Appendixes

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.’

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.’

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.

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

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

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).

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.

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.

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.

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.

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.

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.

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.

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