National Disability Insurance Scheme - access - child - type 1 diabetes - early intervention requirements - whether early intervention supports not most appropriately funded through NDIS - whether more appropriately funded through other general systems - decision under review affirmed

McGarrigle and NDIA [2016] AATA 498

Mulligan and NDIA [2015] AATA 974 (Mulligan No 2)

Young and National Disability Insurance Agency [2014] AATA 401

National Disability Insurance Scheme (Becoming a Participant) Rules 2016

NDIS Operational Guideline - Access - Early Intervention Requirements

Productivity Commission Inquiry Report, Disability Care and Support, Report No 54, August 2011

NDIS - Principles to Determine the Responsibilities of the NDIS and Other Service Systems (the COAG Principles)

1. This decision concerns a five-year old child who was diagnosed with type 1 diabetes when she was four years old. Her mother seeks review on her behalf of a decision by the National Disability Insurance Agency (NDIA) that she does not qualify to be a participant in the National Disability Insurance Scheme (NDIS).
2. A participant is a person who meets the access criteria in s 21 of the National Disability Insurance Scheme Act 2013 (the Act): s 28(1). In addition to age and residence requirements, a person must meet the disability requirements in s 24(1) or the early intervention requirements in s 25.
3. A person who becomes a participant in the NDIS may receive funding for reasonable and necessary supports that satisfy the provisions of s 34(1).
4. The child in this case meets the age and residence requirements. Her mother acknowledges that she does not meet all of the disability requirements in s 24. The question is whether she meets the early intervention requirements in s 25.

1. The NDIS is conceived as an "insurance-based approach, informed by actuarial analysis, to the provision and funding of supports for people with disability": s 3(2)(b). Consistent with this approach, the objective of early intervention support is to "lower the costs and impacts associated with the disability for individuals and the wider community over the longer term".[1]
2. The early intervention requirements "consider the likely trajectory and impact of a person's impairment over time and the potential benefits of early intervention on the impact of the impairment on the person's functional capacity".[2] In this respect, the early intervention requirements differ from the disability requirements in s 24(1) which require substantially reduced functional capacity to undertake one or more specified activities.

1. Section 25(1) of the Act provides that a person meets the early intervention requirements if:

(i) has one or more identified intellectual, cognitive, neurological, sensory or physical impairments that are, or are likely to be, permanent; or

(ii) has one or more identified impairments that are attributable to a psychiatric condition and are, or are likely to be, permanent; or

(iii) is a child who has developmental delay; and

(b) the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by reducing the person's future needs for supports in relation to disability; and

(c) the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by:

(i) mitigating or alleviating the impact of the person's impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management; or

(ii) preventing the deterioration of such functional capacity; or

(iv) strengthening the sustainability of informal supports available to the person, including through building the capacity of the person's carer.

1. Section 25(3) provides that, even if a person meets the requirements in s 25(1), he or she does not meet the early intervention requirements if:

... the CEO is satisfied that early intervention support for the person is not most appropriately funded or provided through the National Disability Insurance Scheme, and is more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or through systems of service delivery or support services offered:

(a) as part of a universal service obligation; or

(b) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.

1. The Minister has made rules under s 209 of the Act about matters including becoming a participant, and support for participants. The National Disability Insurance Scheme (Becoming a Participant) Rules 2016 and the National Disability Insurance Scheme (Supports for Participants) Rules 2016 are relevant in this case. The Rules form part of the legislation.

1. The mother relies on the evidence of Professor Maria Craig, a paediatric endocrinologist at the Children's Hospital at Westmead in Sydney and professor of paediatric endocrinology at the University of Sydney and University of New South Wales, who was engaged by the NDIA to provide an independent assessment of the child for these proceedings. Professor Craig produced a written report based on telephone conversations with the child's mother and documents provided to her by the NDIA. She gave oral evidence by telephone.
2. Professor Craig gave evidence that type 1 diabetes is a permanent physical impairment of the pancreas in that it does not produce insulin, and that children diagnosed with the condition before the age of five have more rapid decline in function of insulin production after diagnosis and are therefore at greater risk of the physical consequences of absolute insulin deficiency. Professor Craig also gave evidence that neurological damage is a universal feature of type 1 diabetes because a "defective counter regulatory response" in the sympathetic nervous system leads to impaired ability to sense hypoglycaemia, or "hypo unawareness".
3. We accept Professor Craig's evidence that the child has a permanent physical and permanent neurological impairment. We are satisfied that she meets s 25(1)(a)(i).
4. Professor Craig also gave evidence that children with type 1 diabetes have a permanent intellectual and cognitive impairment. It is not apparent from the evidence before us that the child in this case is so impaired. We discuss this further below in the context of the impact of type 1 diabetes on her functional capacity to undertake certain activities.

1. The Becoming a Participant Rules provide that young children who have an impairment resulting in developmental delay, or from a particular condition, will not need to provide further evidence of the matters in s 25(1)(b) and (c): cl 6.8. In other words, it is taken that early intervention is likely to benefit those children.
2. Section 9 of the Act provides that developmental delay means a delay in the development of the child under 6 years of age that:

(a) is attributable to a mental or physical impairment or a combination of mental and physical impairments; and

(b) results in substantial reduction in functional capacity in one or more of the following areas of major life activity:

(c) results in the need for a combination and sequence of special interdisciplinary or generic care, treatment or other services that are of extended duration and are individually planned and coordinated.

1. In this case, the mother maintains that the child has developmental delay in self-care and motor development, but concedes that she has never been tested for developmental delay in specific areas of functioning.
2. For reasons we discuss below, we are not satisfied that the child has developmental delay within the meaning of the Act. However, because we are satisfied she has permanent physical and neurological impairments, she meets s 25(1)(a).

1. Professor Craig gave evidence, which is not in dispute, that poorly-managed type 1 diabetes has significant long-term health consequences including blindness, loss of limbs and kidney damage. We accept her evidence that the provision of early intervention supports is likely to benefit the child by reducing her future needs for supports in relation to disability. We are satisfied that she meets s 25(1)(b).

1. In written submissions before the hearing, the NDIA conceded that the child meets all the requirements in s 25(1). It is arguable, on the information before us, that her diabetes does not reduce her functional capacity in any of the areas identified in s 25(1)(c)(i), and the NDIA made argument to that effect in closing submissions. If that argument is accepted, it would follow that the child would not meet s 25(1)(c)(ii) or (iii). It would remain to be seen whether early intervention supports would likely benefit her by strengthening the sustainability of informal supports available to her: s 25(1)(c)(iv).
2. The child's mother maintains that her diabetes affects her functional capacity for social interaction, learning, self-care and self-management. For the reasons below, we are not satisfied that her diabetes affects her functional capacity for those activities in any relevant sense.
3. However, even if we were to accept that the child meets all of the requirements in s 25(1), we are satisfied that early intervention support is not most appropriately funded through the NDIS. We are satisfied that it is more appropriately funded through the general health care system.

The early intervention support sought by the mother

1. The mother contends that the child needs early intervention to ensure she "engages with her disability and maintains proactive management strategies [that] will reduce her needs for support". She says early intervention will "set [the child] up well" to handle the "relentless nature" of diabetes management and strengthen the sustainability of her informal supports.
2. The mother seeks "early intervention focused on developing [the child's] ability for constant self-care and monitoring, such as interventions focused on building resilience, flexibility and mental endurance" and "support to her family who also have to handle and adapt to the persistent ever-changing management of T1D".
3. In addition to full-time assistance at school, the mother says the child requires constant and ongoing monitoring throughout the day and night, and "holistic interventions focused on her medical needs, her social inclusion and her physical and mental ability for self-care". We understand her to seek support that will improve the child's functional capacity in social interaction, learning, self-care and self-management.

1. Professor Craig provided a written report dated 28 July 2016. It is relevant to reproduce parts of her report in full.
2. In her report, Professor Craig stated:

[The child's] developmental milestones are delayed by the pervasive nature of type 1 diabetes, which markedly impairs her functional capacity in activities of daily living, every day, 24 hours a day. She is unable to perform a wide range of normal daily functions compared with other children of her age, due to the restrictions imposed on her by the effects of type 1 diabetes and its treatment. Specific milestones that have been delayed include self-care, achievement of personal-social skills, development of emotional maturity, gross motor skills and cognitive development.

1. Professor Craig reported that the child's ability to feed herself is "markedly delayed - she cannot feed herself without assistance at home, at school, or in any other setting". She stated:

Everything she consumes must be checked to evaluate whether it is a carbohydrate food or not, and the quantity weighed/measured and entered into her pump. Her blood glucose level must be checked at the same time. The insulin dose required for the amount of carbohydrate she will consume must then be entered into the pump (it is not automatic). In addition, a judgment needs to be made as to whether to increase or decrease in the amount of insulin the pump recommends, which depends upon on her blood glucose level at the time and planned activities. The dose must be checked by a responsible adult, and modified depending upon the situation. She must then be supervised to ensure she consumes the right amount of carbohydrate entered into the pump, because if she does not, she will have a hypo and if she doesn't eat it all, the consequences can be disastrous (such as... her becoming unconscious or having a seizure). Every meal and snack, every day, must be managed by an adult - it is too complex for a child of her age to safety determine on the amount of carbohydrate or insulin dose, since an error can have serious, life-threatening consequences.

1. Professor Craig reported that, whenever the child performs any form of exercise or activity, her blood glucose level must be checked and, if necessary, insulin administered to reduce it, or a specific type of fast-acting carbohydrate eaten to prevent hypoglycaemia. She stated that the child's "motor skills are therefore delayed compared with a child of her age, who would ordinarily be able to participate in sport, play in the school ground or in their backyard without adult supervision and close monitoring...". Further, Professor Craig stated that the restriction on her ability to exercise has limited her physical development as she is not able to participate in the same range of physical activities as other children of her age.
2. Professor Craig reported that children of the child's age:

... normally have some degree of independence within their social network, such as play dates without the need for close parental supervision, attending birthday parties without parents, participating in before or after school activities without a parent being present or sleep-overs.

1. She stated that the child "cannot function in these settings without a parent or adult educated in the complex management of type 1 diabetes" and "this intrusion has also impaired development of her personal-social skills in terms of friendships and development of social networks". Further, Professor Craig reported, the child sometimes needs to be fed overnight, or have insulin administered, or have the pump set changed, and this has:

... significantly impaired the development of her emotional independence, as a result of the anxiety related to risk of hypoglycaemia and the potential to her have a seizure or die in her sleep.

1. In relation to self-care, Professor Craig stated that many simple day-to-day self-care activities are restricted by type 1 diabetes. For example, she said, the child cannot bathe on her own like other children of her age because having a bath or shower requires a parent to disconnect and suspend the pump. She stated that the child's developmental milestone of dressing without assistance, normally achieved by her age:

... is impaired due [to] the requirement to secure the pump and tubing around or within her clothing - which varies from day to day depending on what she wears. She must be assisted to dress, to prevent the insertion set being pulled out from under her skin. She cannot dress or undress without help.

1. In response to a question as to what early intervention support is generally beneficial to children with type 1 diabetes, Professor Craig reported that intensive therapy involves more than treatment with an insulin pump and frequent glucose testing; it involves:

... a comprehensive "package" of frequent insulin dose adjustment, frequent blood glucose level monitoring including regular overnight testing, diabetes education (for the individual, their family, school and carers), medical nutrition therapy, exercise therapy and psychological support/counselling. For children of school age, this includes intervention in the school setting to enable safe and appropriate management of this complex condition.

1. Professor Craig reported that early intervention with "psychosocial, behavioural and (if required) psychiatric interventions" can minimise the greater incidence of depression, anxiety, psychological stress and eating disorders experienced by young people with diabetes when compared with their healthy peers. She said the International Society for Paediatric and Adolescent Diabetes recommends an "interdisciplinary team" should aim to provide preventative intervention to patients and families at key developmental times.
2. Professor Craig also referred to the prejudice and discrimination that children with type 1 diabetes and their families are "regularly subjected to" due to lack of understanding of the causes, management and impact of the disease, and said this ignorance can have a "profound impact on emotion, confidence, self-esteem and as a consequence, functional capabilities".
3. In particular, Professor Craig reported that the child would benefit from:
   • support from a carer at all times at school, so she can develop independence in her activities of daily living (eating, participating in sport and other school activities);
   • intervention to enable her to achieve optimum glucose control, thereby preventing deterioration in her functional capacity;
   • counselling and behavioural management to support the child's emotional well-being, her ability to cope with the chronic restrictive nature of her disease, to develop resilience and manage anxiety and fear; and
   • family therapy and safe respite.
4. In Professor Craig's opinion, the supports required are "primarily outside the health system, and predominantly do not relate to medical management, but rather supporting the delivery of her extremely complex care and prevention of acute and long-term complications". Nor does she believe that the supports required can adequately be met by the education system. Noting that the Productivity Commission listed diabetes as an "excluded health condition" in its assessment of the number of people who would be eligible for funded supports from the NDIS, Professor Craig says this should predominantly refer to adult onset/type 1I diabetes and not the more aggressive disease found in very young children.
5. We have some difficulty with Professor Craig's evidence. There is no doubt that she is an expert in her field and able to comment about the effects of type 1 diabetes generally. We accept that many of her observations about its effects will apply to the child in this case. However, in commenting on this particular child, she relies on information provided by the mother, not on her own examination of the child. In our view, an assessment of a child's cognitive and intellectual functioning in particular, as well as capacity to undertake activities such as feeding, bathing and dressing, requires more than an assessment by telephone based on a parent's report.

1. On 17 September 2015, Dr Anthony Lafferty, who is the child's treating endocrinologist, completed a medical report in connection with her application to the NDIA. He noted that the child is on insulin therapy that requires "daily constant monitoring", and that she cannot eat, drink or exercise without a blood glucose testing followed by insulin injection/infusion.
2. Dr Lafferty reported that the child requires 24-hour day monitoring and intervention to manage her illness; her blood glucose levels need to be checked before every meal or snack, and again two hours after eating; her blood glucose level must also be tested throughout the night, and monitored before and after sport and during illness; and before eating, a carer must calculate the carbohydrate content of foods and use this to administer insulin, which is done by inputting data into her insulin pump.
3. Dr Lafferty stated that the child's treatment "will require adult assistance (due to the complexities of insulin treatment) until she reaches adulthood". In addition, "any small illness ...has severe effects on her insulin need and requires additional monitoring and care".
4. In relation to the functional impact of type 1 diabetes on the child, Dr Lafferty indicated that she does not need more assistance than other children of the same age to be mobile, and there is no delay in her mobility. He stated she does not need assistance with communication or with social interaction, and there was no delay in either. He stated that that, although she can socialise, "her diabetes can impact this as she cannot attend parties and social activities without a carer to monitor and intervene where she eats, drinks or exercises". He stated she does not need assistance with learning and there is no delay in her learning.
5. In relation to self-care, Dr Lafferty noted that the child needs "equipment/assisted technology" and she needs assistance with eating/drinking and overnight care. In this regard, the delay was "12 months plus". He noted that she cannot eat without intervention/assistance and requires ongoing monitoring, including overnight.
6. In a letter to the child's school dated 17 September 2015, Dr Lafferty advised that, to fully participate in school activities, it was important to ensure that the child's glucose levels are in the target range which, in practical terms, means that staff are required to regularly monitor her glucose levels, supervise mealtimes and enter information such as blood glucose levels and expected carbohydrate consumption into the insulin pump. He set out a summary of the diabetes management that staff require in order to manage the child while in their care.

1. The mother relies on Professor Craig's evidence. She told the Tribunal that the child attends a regular school where she has a detailed plan for management of her diabetes. There are also two learning support assistants at the school who are available to all the children, principally to help with learning, but have been educated in how to deal with the child's diabetes, for example her requirements around eating.
2. The mother says the child is not keeping up with milestones in the same way as other children; she cannot eat or exercise in the same way, and she cannot go to events such as parties without supervision. She detailed the many complications and intrusions diabetes imposes on the child's life each day. She said, for example, that the child:

...can't control her emotions. She's not old enough for that yet. In four or five years and hopefully with some really good support in these early years she's going to learn that you can't just knock people down and you can't treat people like that just because you're feeling a bit fuzzy.

1. The mother also seeks support for the family who she says have to live daily with the prospect of the child becoming seriously ill, or even dying, if her condition is not properly managed.
2. The mother submits that supports currently available through the health and education systems and government services are poor at best and do not provide support in a holistic way. She told the Tribunal that there was a disparity between what ACT-based services purported to offer children with type 1 diabetes and the level of support they could actually provide. She said, for example, that she had approached the diabetes paediatric service offered by ACT Health, but that it was "awful" and much more focused on the needs of people with type 2 diabetes.
3. It appears to the Tribunal that the provision of support while the child is at school, in particular the learning support assistants, is directed primarily at her health needs rather than her educational needs. The mother gave evidence that "their whole role is just to be able to come in and help supervise with her eating and those sorts of things". This support is offered in accordance with a management plan for the child which the mother had developed for use in the school. In this respect the role of the learning support assistants in supporting the child appears to be different to their role in respect of other students.

Does the child suffer from developmental delay and is her functional capacity impaired?

1. The evidence of the two medical experts to which the Tribunal was referred appears to be at least partially in conflict on the question of the child's developmental delay. Professor Craig was in no doubt that she is developmentally delayed; her evidence was contemporary but was not informed by a personal examination of the child. Dr Lafferty took the view that she did not require more assistance than children of her age - and did not experience developmental delay - in respect of her communication, social interaction or learning skills. His report is now more than 12 months old but was based on examination and treatment of the child. Because Dr Lafferty was not called to give evidence this apparent divergence of view was not fully explored before the Tribunal. Only on the criterion of self-care did the experts appear to be in agreement that the child was experiencing developmental delay.
2. On the question of whether early intervention supports are likely to mitigate the impact of diabetes on the child's capacity for communication, social interaction and so on (s 25(1)(c)(i)) the absence of a current functional assessment of her is significant. The NDIA pointed out, for instance, that the provision of learning support assistants in the child's school at least partly addressed the child's functional capacity for learning, and that it was unclear whether NDIS early intervention supports would complement or merely replicate that assistance.
3. The NDIA suggested that there was no "hard evidence" about the child's motor skills. The Tribunal shares the NDIA's doubts on this and related questions of functional capacity. The NDIA contended that the child's need for early intervention supports derives from the challenges intrinsic to the delivery of her medical treatment, and not primarily from her impairment. In our view this submission should be supported.
4. The mother submits that Dr Lafferty's report is out of date and was completed quickly. She says he only sees the child every three to four months for what she describes as "a quick check up of her blood sugar levels". She submits we should prefer Professor Craig's more considered and more relevant response. We do not agree. Dr Lafferty was, and continues to be, the child's treating endocrinologist. He has the benefit of having seen her in person over an extended period. We prefer his assessment of the child's functional capacity to that of Professor Craig. Importantly for this decision, he does not suggest that the child is cognitively or intellectually impaired, or that her functioning is delayed, other than in relation to self-care. Nor is there anything in Dr Lafferty's report to suggest that her delay in respect of self-care is substantial. A delay of 12 months in a child five years of age should not be so regarded, given natural variations in outcome in that age group.
5. On balance, we are not satisfied that the child has developmental delay within the meaning of the Act. However, even if we are mistaken on these questions, which go to whether she satisfies s 25(1), we have come to the view that she does not meet the early intervention requirements by virtue of s 25(3).

Whether early intervention support not most appropriately funded by the NDIS and more appropriately funded by a general support system

1. Section 25(3) reduces the scope of s 25(1): a person who meets the early intervention requirements in subsection (1) may nonetheless be excluded from this class of persons where it appears that early intervention support for this person is not "most appropriately funded or provided" through the NDIS, and is "more appropriately funded or provided" in other ways, including through "general systems of service delivery" (subsection (3)).
2. In this case, the NDIA contends that the circumstances of the child's early intervention requirements bring her within s 25(3), in that early intervention support for her is more appropriately funded or provided through other service systems, in particular the health and education systems.
3. It was put to the Tribunal by the NDIA that the provision in s 25(3) "is a critical safeguard which reflects two fundamental and interrelated aspects of the NDIS". The first of these was said to be the need to ensure the financial sustainability of the scheme, and the second was that the scheme was "not intended to respond to problems or shortfalls in mainstream services by providing its own substitute services".
4. Section 25(3) is in almost identical terms to s 34(1)(f), which concerns reasonable and necessary supports for participants, the essential difference being one of emphasis. Section 25(3) requires the CEO to be satisfied that early intervention support is not most appropriately funded through the NDIS, and is more appropriately funded or provided through other general systems of service delivery.
5. Section 34(1)(f) requires the CEO, when specifying the reasonable and necessary supports that will be funded, to be satisfied that the support is most appropriately funded or provided through the NDIS, and is not more appropriately funded or provided through other general systems of service delivery.
6. The child's mother maintains that s 25(3) should be given a more generous interpretation than s 34(1)(f) because it concerns early intervention. We are not persuaded by that argument. The difference in emphasis between the two provisions appears to relate to the context in which each appears. Whereas each of the provisions of s 34(1) must be positively satisfied for the purposes of specifying the reasonable and necessary supports that will be funded, s 25(3) operates to exclude a person who otherwise meets the early intervention requirements.
7. The Becoming a Participant Rules are silent on the application of s 25(3). The Support for Participants Rules contain clauses relating to the application of s 34(1)(f). The mother argues that the principles in the Support for Participants Rules do not apply to s 25(3). We do not agree. The policy underlying both provisions appears to be the same: that the NDIS should not fund supports that are more appropriately provided through other general systems of service delivery.

1. In considering whether each of these supports is most appropriately funded by the NDIS or is more appropriately funded by the health system, it is important to consider the nature and purpose of the NDIS generally.
2. Section 3(3) provides that, in giving effect to the objects of the Act, regard is to be had to matters including:
   • the broad context of disability reform provided for in the National Disability Strategy 2010-2020 as endorsed by COAG on 13 February 2011; and

• the provision of services by other agencies, departments or organisations and the need for interaction between the provision of mainstream services and the provision of supports under the NDIS.

3. The NDIS implemented, in large part, the recommendations of the Productivity Commission's 2011 report, Disability Care and Support, Report No 54, August 2011. Regarding the role of "mainstream" services such as education, health care, public housing, transport and education services, the Commission said:

It is generally accepted that disability services should not replace mainstream or other specialist services available to the broader population, or be expected to meet all the needs of people with disability. Indeed, a key policy goal is to move away from primary reliance on specialist disability services to the use of mainstream services or at least a mix of the two.[3]

Access to generic services, such as health and housing, can affect demand for NDIS-funded services, and vice-versa. It will be important for the [NDIS] not to respond to problems or shortfalls in mainstream services by providing its own substitute services. To do so would weaken the incentives by government to properly fund mainstream services for people with a disability, shifting the cost to another part of government (such as from a state government to the NDIS, or from one budget 'silo' to another). This 'pass the parcel' approach would undermine the sustainability of the scheme and the capacity of people with a disability to access mainstream services.

1. That said, the Commission recognised (at pp 238-239) that there were difficulties establishing "clear boundaries" between the disability service system and other mainstream service systems and that, even where boundaries were clear, they were not always consistent as between the states. It recommended that primary care and inpatient and outpatient hospital-based services, and medical and pharmaceutical products, should remain outside the scope of the scheme. Even then, it said (at p 182), it was "likely that some ambiguity will remain around the respective responsibilities of the health and disability system", in particular "which system is responsible for meeting the support needs of individuals with a chronic health condition". Moreover, it recognised (at p 183) that "gaps between disability and health services persist".
2. The Commission did not purport to determine which conditions or disabilities would fall within the scope of the NDIS, although it suggested broad principles for determining inclusion or exclusion from the scheme, and even nominated conditions/disabilities which are considered would fall either side of this line. It said:

It is important to note that, while a combination of functional support need and main disabling conditions was used to proxy tier 3, it is not proposed that any person be excluded on the basis of condition. However, it is likely that people with certain conditions (such as cancer and other chronic health conditions) will have their needs best met by another system (such as the health and the palliative care system). Hence, in proxying the tier 3 population it assumed that people with certain conditions were most likely in or most likely out and hence either included or excluded.[4]

On this basis, it classified diabetes as an excluded condition.[5] Professor Craig suggested to the Tribunal that this might have been a reference to the overwhelming majority of diabetics who suffer from type 2 diabetes, but felt that type 1 diabetes deserves inclusion, particularly in children.

1. Schedule 1 to the Support for Participant Rules sets out considerations relating to whether supports are most appropriately funded or provided through the NDIS or more appropriately funded or provided through other service systems. It states:

7.4 The NDIS will be responsible for supports related to a person's ongoing functional impairment and that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community and participate in education and employment.

(a) the diagnosis and clinical treatment of health conditions, including ongoing or chronic health conditions; or

(b) other activities that aim to improve the health status of Australians, including general practitioner services, medical specialist services, dental care, nursing, allied health services (including acute and post-acute services), preventive health, care in public and private hospitals and pharmaceuticals or other universal entitlements; or

(c) funding time-limited, goal-oriented services and therapies:

• (i) where the predominant purpose is treatment directly related to the person's health status; or

• (ii) provided after a recent medical or surgical event, with the aim of improving the person's functional status, including rehabilitation or post-acute care; or

(d) palliative care.

1. In relation to early childhood development, the Support for Participants Rules provide:

7.8 The NDIS will be responsible for personalised supports, specific to a child's disability (or developmental delay), which are additional to the needs of children of a similar age and beyond the reasonable adjustment requirements of early childhood development service providers.

7.9 The NDIS will be responsible for early interventions for children with disability (or developmental delay) which are:

(a) specifically targeted at enhancing a child's functioning to undertake activities of daily living, but not supports which are specifically for the purpose of accessing a universal service such as school readiness programs that prepare a child for education; and

(b) likely to reduce the child's future support needs, which would otherwise require support from the NDIS in later years, including through a combination and sequence of supports.

(a) meeting the early childhood education and care needs of a child with a developmental delay or disability required by children of a similar age including through inclusion supports that enable children to participate in early childhood education and care settings; or

(b) supports, which are clinical in nature provided in the health system, including acute, ambulatory or continuing care; or

(c) new-born follow-up provided in the health system, including child and maternal health services.

1. The Support for Participant Rules derive from the NDIS - Principles to Determine the Responsibilities of the NDIS and Other Service Systems made by the Council of Australian Governments in 2013 and revised in 2015 (the COAG Principles). Those Principles state that the Commonwealth, State and Territory health systems:

...will remain responsible for the diagnosis, early intervention and treatment of health conditions, including ongoing or chronic health conditions.[6]

The NDIS will be responsible for supports required due to the impact of a person's impairment/s on their functional capacity and their ability to undertake activities of daily living.[7]

1. The Tribunal, standing in the shoes of the CEO of the NDIA, must determine whether the child's "early intervention support" is "not most appropriately funded or provided through the [NDIS], and is more appropriately funded or provided" by the health system, or the health and education systems.
2. "Appropriately" is not defined in the Act, nor is guidance offered by its explanatory memorandum. "Appropriate" is defined by the Macquarie Dictionary to mean "suitable or fitting for a particular purpose... belonging or peculiar to one." By what criteria, then, would a decision maker consider systems other than the NDIS as being more suitable to furnish this child's early intervention support?
3. Some clue is provided by other provisions in the legislation offering guidance to decision makers. Section 3 sets out the objects of the Act; it requires a decision maker to have regard, inter alia, to:
   • (c) the need to ensure the financial sustainability of the National Disability Insurance Scheme; and...

• (d) the broad context of disability reform provided for in:

• (i) the National Disability Strategy 2010-2020 as endorsed by COAG on 13 February 2011; and...

• (e) the provision of services by other agencies, Departments or organisations and the need for interaction between the provision of mainstream services and the provision of supports under the National Disability Insurance Scheme.

4. In addition, s 4 sets out general principles to guide actions taken under the Act, including:

(14) People with disability should be supported to receive supports outside the National Disability Insurance Scheme, and be assisted to coordinate these supports with the supports provided under the National Disability Insurance Scheme.

1. We consider that the inclusion of these provisions in the Act highlights a clear feature of the architecture of the NDIS, namely that it is not intended to be the vehicle by which all the functional needs of Australians with disabilities are met. Rather, the intention is plainly evinced that those needs should be met by a balance of services coming both from the NDIS and from general health, education and community resources which address the needs of the broader population. Clearly, the focus and cost effectiveness of service delivery as between specialist and general services are significant factors in determining from which well resources are to be drawn.
2. Implicit in such an approach is that a hierarchy of need assists in determining whether generalist or specialist services are most appropriate for individuals with disabilities. The Tribunal reflected on that hierarchy in Mulligan and NDIA [2015] AATA 974 (Mulligan No 2):
   1. The Commission observed (at 158) that "[p]eople with a disability have different needs and aspirations and encounter different barriers" and it was not intended that the NDIS address the care and support needs of all individuals. Rather, the scheme should focus on those whose needs are greatest. To this end, the Commission recommended (Recommendation 3.1) it should:

• cost-effectively minimise the impacts of disability, maximise the social and economic participation of people with a disability, create community awareness of the issues that affect people with disabilities and facilitate community capacity building. These measures should be targeted at all Australians * provide information and referral services, which should be targeted at people with, or affected by, a disability * provide individually tailored, tax-payer funded support, which should be targeted at people with significant disabilities who are assessed as needing such support...

2. These functions of the NDIS were described by the Commission (at 158-159) in terms of "tiers":

• Tier 1: Everyone * Tier 2: People with, or affected by, disability * Tier 3: People with disability for whom NDIS-funded, individualised supports would be appropriate

3. Tiers 1 and 2 are reflected in the provisions of Chapter 2 as well as in Chapter 3 of the Act. In particular, s 13 provides for general supports for persons who are not participants in the NDIS, and funding to individuals and organisations to help people with disability participate in social and economic life. Tier 3 is reflected in the provisions of Chapter 3 which concerns Participants and their plans.
4. The Tribunal notes that in subsection (1) of s 25, reference is made to consideration of whether early intervention supports (in the plural) would assist in overcoming the impact of impairment on a person's functional capacity, whereas in subsection (3) the test is whether early intervention support (in the singular) is more appropriately provided outside the scheme. The difference in language is significant. A person might meet the early intervention requirements under subsection (1) if some early intervention supports meet the requisite test but others do not. However, in subsection (3) a decision maker must determine whether the person's early intervention requirements taken as a whole are best funded or provided within or outside the NDIS.

1. As already mentioned, the financial sustainability of the NDIS is an object of the Act (s 3(3)(b)). The need to ensure the financial sustainability of the scheme is also one of the general principles set out in s 4 (subsection (17)(b)). The Tribunal noted in McGarrigle and NDIA [2016] AATA 498:

The need to ensure the financial sustainability of the NDIS is relevant to the performance of any function and the exercise of any power under the Act, and its objects are given effect by, among other things, having regard to financial sustainability of the scheme

1. The Tribunal asked the parties to make further submissions in writing regarding the financial impact of admitting children with early onset type 1 diabetes to the NDIS. It notes the mother's concession at the hearing that a finding in favour of the child here would stand as a precedent, given that there were no particular features of the child's circumstances which set her apart from other children diagnosed at or below the age of five with type 1 diabetes. Professor Craig was also invited to provide information following the hearing regarding the number of children in Australia falling into this category, but did not take up the Tribunal's invitation.

The NDIA subsequently provided estimates of cost under three scenarios, set out in the following table:[8]

Scenario 1: Only children aged 0 - 14 who are diagnosed with type 1 diabetes under the age of 5 enter the Scheme until age 14

Estimated number of people with type 1 diabetes at 30 June 2019

Scenario 2: All children aged 0 -14 diagnosed with type 1 diabetes enter the Scheme until age 14

Estimated number of people with type 1 diabetes at 30 June 2019

Scenario 3: All people under 65 years who are diagnosed with type 1 diabetes under the age of 15 enter the scheme

Estimated number of people with type 1 diabetes at 30 June 2019

1. The estimate of $17,000 as the weighted average cost of supports is based on the scheme's experience of children aged 0 - 14 years with developmental delay as the primary disability, the Tribunal was told.
2. The mother disputed these estimates, saying that the NDIA's figures "do not reflect the true number of children under seven who would need/apply for early intervention support". The Tribunal however accepts the methodology behind these estimates as presented by the NDIA although, as discussed below, the premise for using Scenario 3 in this matter is not accepted.
3. Of course, the fact that admitting a person, or by implication a class of persons, to be participants under the Act entails cost to the scheme does not conclusively dispose of such an application. Financial sustainability is but one of a number of considerations which decision-makers must bear in mind.

1. The Tribunal recognises that the Act, and the extrinsic documents aiding in its interpretation, envisage a broad division of responsibility between the NDIS and (relevantly here) the health system. That division places at the feet of the health system the provision of services and supports that address chronic health conditions, and into the bailiwick of the NDIS services and supports addressing what might be colloquially described as disabilities. Notional examples of such chronic health conditions given in the Productivity Commission report include emphysema, haemophilia and breast cancer; examples of such "disabilities" include blindness, multiple sclerosis and amputated limbs.[9]
2. The child in the present proceedings suffers from a chronic health condition - type 1 diabetes. We accept that sufferers from chronic health conditions may be able to meet the early intervention requirements of s 25, although the Productivity Commission report suggests they are less likely to do so than a person with what is commonly thought of as a disability.
3. Having heard the evidence, we take the view that the early intervention support required by the child arises essentially out of the exigencies of her chronic health condition. Many of the early intervention supports described to the Tribunal as being sought by the child amount, in our opinion, to supports relating directly or indirectly to the management of her blood glucose levels during a period of particular vulnerability, namely her extreme youth. As such, they fall within what the Support for Participant Rules describes as "time-limited, goal-oriented services and therapies...where the predominant purpose is treatment directly related to the person's health status", that is, as services which should be provided outside the NDIS.
4. The following observations on the evidence support that conclusion.
5. Professor Craig's evidence emphasised the medical risks associated with type 1 diabetes in young children, including sensory and autonomic nerve damage, and even death. Although Professor Craig also observed that diabetes led to a reduction in the child's functional capacity, it seems to the Tribunal that this reduction in capacity stems substantially from the challenges surrounding the management of her blood glucose levels. Her inability, for example, to feed herself independently is the product of needing to manage potentially-disastrous outcomes if her insulin levels are not properly calibrated with her dietary intake, not of the condition per se. As she grows older, this reduction in functional capacity will lessen with maturity and experience, even though the condition itself is unlikely to ameliorate.
6. The NDIA put to the Tribunal, and the Tribunal agrees, that

...assistance to do those activities [feeding, self care, etc] isn't needed because the applicant is inherently struggling with those activities, as somebody perhaps with developmental delay would, it's because she has this ... extremely high maintenance, very demanding, very complex medical health needs.[10]

As such, the Tribunal notes, but cannot support, the contention of Professor Craig that the supports required by the child are "primarily outside the health system, and predominantly do not relate to medical management, but rather supporting the delivery of her extremely complex care and prevention of acute and long-term complications".[11]

1. The Tribunal notes the clear evidence of shortfalls and inadequacies in the quality of health and educational services in the ACT focused specifically on the child's needs. We accept that NDIS-funded supports would most probably improve outcomes in the child's ability to cope with the reduction in her functional capacity. However in Young and National Disability Insurance Agency [2014] AATA 401 the Tribunal said:

Whether or not funding is available through other general systems is not the test of whether it is most appropriately funded or provided through the NDIS. The fact that the health system does not fund entirely, or even at all, what is essentially clinical treatment, or some other form of support that is more appropriately funded through the health system, does not make it the responsibility of the NDIS. In our view, s 34(1)(f) reflects the statement of the Productivity Commission, which we have referred to above, that the purpose of the NDIS is not to respond to any shortfalls in mainstream services (nor does it purport to impose any obligations on another service system to fund or provide particular supports: cl 7.3 of sch 1).[12]

1. The existence of diabetes-specific services accessible to the child, whatever their shortcomings, and the provision of learning support assistants at her school, suggest a design feature in the arrangement of government and non-government organisation service provision that such services are the responsibility of funding sources outside of the NDIS. Such an intention goes to the question of where supports are more appropriately funded or provided pursuant to s 25(3). The existing pattern of service provision to diabetics also seems consistent with the intentions exhibited in documents such as the Commission's Disability Care and Support Report and the Support for Participant Rules.
2. It is on this basis - that the provision of supports to this child are more appropriately funded and provided outside the NDIS - that the Tribunal determines that the child does not meet the access criteria to become a participant in the scheme at this time.
3. We accept that any decision to treat the child as a participant in the NDIS has an implication for the latter's financial sustainability within the terms of the Act. Given that the impact of type 1 diabetes on this child's functional capacity appears to be typical of a child so diagnosed under the age of seven, it is reasonable to assume that such a decision by the Tribunal could operate to allow other young type 1 diabetics access to the scheme.
4. It is also reasonable to suppose, pursuant to Scenarios 1 and 2 in the NDIA's submission of 31 August 2016 (see paragraph 79 above), that younger children diagnosed with type 1 diabetes are likely to need early intervention supports - such as those being sought here - until about the age of 14.[13] On that basis we note the NDIA's submission that a failure to affirm the decision at issue here could entail a cost to the scheme in excess of $100 million. Such a cost should be regarded as significant.
5. However, it does not follow, in our opinion, that the admission to the scheme of children diagnosed under the age of five with type 1 diabetes would necessarily entail retention of those children within the scheme until the age of 65. We accept that the nature of type 1 diabetes is such that early intervention supports would become less necessary during puberty/early adulthood. We therefore do not accept the costs inherent in Scenario 3 of the NDIA's submission.
6. Although the costs to the scheme inherent in Scenarios 1 and 2 are likely to be significant, we entertain a measure of doubt as to the basis on which some of the assumptions underpinning the scenarios are made. As such our decision that the child does not meet the access criteria is not based on any finding as to the impact her participation might have on the financial sustainability of the scheme.
7. The Tribunal affirms the reviewable decision of 9 February 2016 that the child does not meet the access criteria to become a participant in the scheme.

I certify that the preceding 94 (ninety- four) paragraphs are a true copy of the reasons for the decision herein of Deputy President Gary Humphries, Senior Member Jill Toohey

.........................[sgd]...............................................

[1] Productivity Commission Inquiry Report, Disability Care and Support, Report No 54, 31 July 2011, vol 2, p 609.

[2] National Disability Insurance Scheme (Becoming a Participant) Rules 2016 cl 2.5(b).

[3] Productivity Commission, Disability Care and Support Report, August 2011, p 238.

[4] Productivity Commission, Disability Care and Support Report, August 2011, p 751.

[5] Productivity Commission, Disability Care and Support Report, August 2011, p 752.

[6] NDIS - Principles to Determine the Responsibilities of the NDIS and Other Service Systems, 27 November 2015, p 3.

[7] NDIS - Principles to Determine the Responsibilities of the NDIS and Other Service Systems, 27 November 2015, p 3.

[8] NDIA supplementary submission, 31 August 2016, Table 3.

[9] Productivity Commission, Disability Care and Support Report, August 2011, p 752.

[11] Professor Craig's report, 28 July 2016, p 4

[13] Dr Lafferty thought that the child here would require adult assistance to deal with the complex of insulin treatment until she reaches adulthood - his report, p 4.