Chapter 6: Assessing Care Requirements

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

Current assessment processes

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

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

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

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

The ADAT and CDAT are based in disallowable instruments.⁴⁵

Current assessment issues

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

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

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

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

… … …

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

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

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

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

Application processes

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

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

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

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

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

… … …

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

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

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

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

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

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

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

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

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

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

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

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

Issues raised in consultations

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

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

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

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

… … …

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

A new approach to assessment

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

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

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

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

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

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

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

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

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

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

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

Recommendation 19

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

Recommendation 20

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

Recommendation 21

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

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

Recommendation 22

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

Recommendation 23

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

Recommendation 24

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

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

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