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NATIONAL DISABILITY INSURANCE SCHEME - reasonable and necessary supports - emphysema - diabetes - portable oxygen concentrator - insulin pump - whether supports most appropriately funded or provided through the NDIS or more appropriately funded or provided though the health system - decision that both more appropriately funded through the health system affirmed

National Disability Insurance Scheme (Supports for Participants) Rules 2013

1. Mr Gordon Young has a number of medical conditions including type 1 diabetes and emphysema. He relies on insulin for his diabetes and supplementary oxygen for his emphysema. In August 2013, he applied to become a participant in the National Disability Insurance Scheme (NDIS). The National Disability Insurance Agency (NDIA) decided that he met the access criteria and qualified to become a participant.
2. When a person becomes a participant in the NDIS, the NDIA helps him or her prepare an individual plan which is in two parts: a statement setting out his or her goals, objectives, aspirations and personal circumstances, and a statement of participant supports setting out the supports that will be funded or provided through the NDIS.
3. 3. Mr Young's statement of participant supports included funding for a range of supports to help him increase his participation in community, social, civic and physical activities. It did not include funding for a portable oxygen or an insulin pump, both of which he had requested. The NDIA says both are more appropriately funded through the health system. Mr Young seeks review of that decision.

1. The NDIS comprises support for people with disability in three forms: general supports by way of coordination, strategic and referral services; funding to persons or organisations to enable them to assist people with disability participate in economic and social life; and personal, goal-based plans by which funding for reasonable and necessary supports is provided to persons with disability who qualify to be participants.
2. The objects of the NDIS Act are set out in s 3. As well as giving effect to Australia's obligations under the UN Convention on the Rights of Persons with Disabilities, they include:
   • supporting the independence and social and economic participation of people with disability;
   • providing reasonable and necessary supports for participants; and
   • enabling people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports.
3. Before specifying in a statement of participant supports the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO of the NDIA (and so the Tribunal) must be satisfied of all of the criteria in s 34(1) of the NDIS Act. We will come back to these in more detail.
4. The Minister has made Rules under s 209(3) of the Act to assist in deciding matters including what are reasonable and necessary supports (National Disability Insurance Scheme (Supports for Participants) Rules 2013). The Rules form part of the legislation that we must apply. As well, the CEO of the NDIA has made Operational Guidelines to assist staff in making decisions and performing other functions under the Act.
5. The importance of ensuring the financial sustainability of the NDIS so that it functions as an insurance-based scheme to maximise the participation, productivity and inclusion of people with disabilities, is emphasised throughout the Act and the Rules. When giving effect to the objects of the Act, or performing any function or exercising any power under the Act, regard must be had to the need to ensure the financial sustainability of the scheme: s 3(3)(b), s 4(17).

MR YOUNG'S REQUEST FOR A PORTABLE OXYGEN CONCENTRATOR AND AN INSULIN PUMP

1. Mr Young has had emphysema since 2008. It is now moderately severe and seriously limits his capacity for movement and exercise. He relies on a fixed oxygen supply at his bedside when sleeping and when inside the house. He uses a portable oxygen cylinder, which he moves by means of a trolley, when he has to go outside the house. Together, the cylinder and trolley weigh nine kilograms. Very occasionally, he will go without oxygen for short periods.
2. Mr Young told us that using the portable cylinder seriously restricts his access to the community. He finds it embarrassing to be seen pulling it behind him and is reluctant to go out and join in social occasions such as visiting friends and going to the football. It is awkward and he bumps into walls and furniture when he is pulling it, for example at a café or restaurant. He does voluntary work driving people with disabilities in his local area one day each week and puts the cylinder in the back of the car and drives with the hose attached which he finds inconvenient and embarrassing.
3. Mr Young asks the NDIS to fund a portable oxygen concentrator which is a battery-powered device which produces oxygen. Depending on the model, a concentrator weighs about two to four kilograms, and is carried in a shoulder bag. Mr Young has used a portable oxygen concentrator once on holiday for three days and found it gave him greater freedom. It was more convenient and less embarrassing than pulling the trolley behind him. Having a portable concentrator would make him feel like going out more and would enable him to go to the gym which is difficult with the hoses attached to his portable cylinder and having to manoeuvre the trolley around the gym equipment.
4. The fixed oxygen supply at home and the portable cylinders are provided to Mr Young free of charge under the State Wide Equipment Program (SWEP) run by the Victorian Department of Health. No funding or subsidy is available for portable oxygen concentrators which range between $5000 and $6000 in cost, although we understand that, if recommended by Mr Young's respiratory physician, some funding may be available under the SWEP. Dr Christopher Steinfort is currently preparing a report for the NDIA but it is not known what his recommendation will be, and we understand it will only concern a scientific comparison between the various forms of oxygen supply, and not any increased access to the community that the portable concentrator might afford Mr Young.
5. Mr Young's general practitioner, Dr Joseph Virgona, reported in August 2013 that he required portable oxygen "to maintain good health". In May 2014, Dr Virgona reported:

Both a portable oxygen supply and an insulin pump would improve Gordon's metabolic state and improve his memory, which in turn would improve his ability to manage his chronic illnesses, and help keep him out of hospital.

1. It is not clear from Dr Virgona's report whether, by a portable oxygen supply, he means a portable cylinder or a portable oxygen concentrator. Either way, he refers to the benefits to Mr Young's health rather than to any effect on his ability to undertake activities of daily living or any increased access to the community that a portable oxygen concentrator would give him.

1. In May 2014, the NDIA arranged for an occupational therapist, Anne Mackay, to visit Mr Young at home "to determine an appropriate wheelchair for [Mr Young's] use when out in the community with equipment to transport the oxygen cylinder safely". Ms Mackay spoke with Mr Young's wife and with Dr Virgona.
2. Ms Mackay recommended Mr Young receive a portable oxygen compressor (by which we understand she meant a concentrator) but, if not provided, that a power wheelchair option to transport his portable cylinder "would need to be reviewed".
3. Mr Young disputes a number of the observations in Ms Mackay's report. In particular, he disputes her comment that he could move around freely in the garden without using his portable cylinder, and that he is currently attending a gym and managing without using oxygen at all. We accept his evidence that he used the portable cylinder at all times during Ms Mackay's visit, and that he told her he tried going to the gym twice only without oxygen and found it too difficult.
4. Given that Ms Mackay's report was prepared for a particular purpose not directly related to what we have to decide, and that a number of her observations are disputed, her report does not assist us.

1. Mr Young has had type 1 diabetes since 1995. He has relied on insulin for most of that time. Up until July 2011, he injected himself up to eight times each day.
2. Since July 2011, Mr Young has used an insulin pump which regulates the dosage of insulin and delivers it through a small hose into a needle attached to his stomach which he changes every three or four days. Mr Young says he "loves it". He no longer has to check his blood sugar levels throughout the day and night and use injections to adjust them. He is no longer the "nasty" person he was when his blood sugar levels dropped. He can eat meals without having to time them with injections. He no longer has the embarrassment of using needles in front of others, or having to find a public toilet or a private place where he can inject himself when out in public. No one even knows he is using the pump unless he tells them. He says it has made a "massive" change to his life and he feels like a different person.
3. Mrs Young told us the insulin pump has made a huge difference to their lives. Previously, Mr Young's moods would swing with his unstable blood sugar levels and he was very difficult to live with but the pump has brought harmony to their lives.
4. Mr Young's endocrinologist, Dr Samantha Worboys, strongly recommends he continue using his insulin pump "as a critical part of his diabetes management". She believes it will "allow him to achieve much tighter and more stable glycaemic control and hence prevent any further long-term microvascular and macrovascular complications" as well as improve his quality of life. As we have already noted, Dr Virgona also says an insulin pump would improve Mr Young's health and help him manage his diabetes.
5. Insulin is available under the Pharmaceutical Benefits Scheme. The needles that Mr Young previously used to inject himself were provided free under the National Diabetes Support Service (NDSS). However, the only program that funds insulin pumps is managed by the Juvenile Diabetes Research Foundation funded by the Commonwealth Government; no funding is available, or ever has been available, to persons over 18.
6. Insulin pumps cost around $9,000 to $10,000. They come with a four-year warranty but their life is some years longer. The only means by which an adult can have the cost met is through private health insurance. The full cost of Mr Young's present pump, which included several days in hospital to have it fitted and so he could learn how to use it, was met by his then private health insurer. He no longer has private health insurance and, without the support of the NDIS, he will not be able to pay for a replacement pump. In the meantime, the cost of the "consumables" which he needs to operate the pump is subsidised through the NDSS; Mr Young pays approximately $40.00 each month.

1. Actions under the NDIS Act are guided by the principles in s 4. They include the principle that reasonable and necessary supports should:
   • (i) support people with disability to pursue their goals and maximise their independence;
   • (ii) support people with disability to live independently and be included in the community as fully participating citizens; and
   • (iii) develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.
2. Not every support required by a participant will be funded or provided through the NDIS. The CEO of the NDIA (and so the Tribunal) must be satisfied of all of the following in relation to each support provided or funded:

(a) the support will assist the participant to pursue the goals, objectives and aspirations included in the participant's statement of goals and aspirations;

(b) the support will assist the participant to undertake activities, so as to facilitate the participant's social and economic participation;

(c) the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;

(d) the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;

(e) the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;

(f) the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:

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

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

1. This last criterion reflects the relationship between the NDIS and "mainstream services" such as health, employment and education, described by the Productivity Commission in its 2011 report which formed the basis for agreement between the Commonwealth and the States on the establishment of the NDIS. The Productivity Commission said:

Access to generic services, such as health and housing, can affect demand for NDIS 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. The decision under review focussed on s 34(1)(f) as the basis of rejecting the supports sought by Mr Young. Mr Sassella, who represented the NDIA at the hearing, submitted that it appeared that the supports requested by Mr Young also do not meet s 34(1)(c), that they do not represent value for money because their costs, which total approximately $15,000, are not reasonable in relation to the benefits achieved and the costs of alternative support. There may be merit in that submission but our focus will remain on s 34(1)(f).

ARE THE SUPPORTS MR YOUNG SEEKS MOST APPROPRIATELY FUNDED OR PROVIDED THROUGH THE NDIS?

1. Schedule 1 to the Supports for Participants Rules sets out considerations that must be taken into account in deciding whether a support is most appropriately funded through the NDIS and is not more appropriately provided or funded through other general service systems such as the health, education, employment and housing systems.
2. The relevant general service system in this case is the health system. Schedule 1 of the Rules 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.

7.5 The NDIS will not be responsible for:

(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. The NDIA says, firstly, that a portable oxygen concentrator and an insulin pump do not meet the criteria in 7.4 because they are not supports that enable Mr Young to undertake activities of daily living; rather, they provide additional benefits or supports on top of what he already needs and uses to undertake his daily activities; and nor are they "integrally linked" to the care and support that he needs in order to live in the community and participate in education and employment.
2. The NDIA says, secondly, that the concentrator and the pump are both forms of clinical treatment for Mr Young's chronic health conditions, and so more appropriately funded through the health system. The NDIA says that, to the extent that services are more appropriately provided through the health system but not in fact provided, it is not the role and purpose of the NDIS to step in and fill the gap.
3. Mr von Einem, who represented Mr Young, says his ability to access and live in the community is severely restricted by the burden of transporting an oxygen cylinder around with him and, in the absence of an insulin pump, having to inject himself with insulin throughout the day. Both cause him inconvenience and embarrassment, and limit his access to the community, and a portable concentrator and an insulin pump would guarantee him enhanced ability to live in the community.
4. Mr von Einem accepts that a stationary oxygen cylinder, and insulin vials and needles, are clinical treatment and agrees both are fundable and provided through the Department of Health. However, he says neither the concentrator nor the insulin pump is sought for clinical treatment of Mr Young's health conditions; rather, they are the means of delivery of oxygen and insulin.

1. We will first consider whether a portable oxygen concentrator and an insulin pump meet paragraph 7.4 in Schedule 1 which provides that the NDIS will be responsible for supports in relation to the ongoing functional impairment of a person and which enable that person to undertake activities of daily living.
2. We accept without hesitation that Mr Young finds it embarrassing and inconvenient to go out in public pulling an oxygen cylinder weighing nine kilograms behind him and that it is awkward to manoeuvre. We have no doubt that a concentrator, which is concealed in a shoulder bag and much lighter in weight, is more convenient and less embarrassing, although the nasal prongs still make his disability visible. We also have no doubt that the insulin pump has made a great difference to his life.
3. However, although Mr Young prefers not to go out in public with the oxygen cylinder, and he finds injecting himself when away from home embarrassing and inconvenient, we are not satisfied that he is unable to undertake activities of daily living, or participate in the community, without them. He is able to undertake activities of daily living inside his house with his fixed oxygen supply and to participate in the community, and undertake activities of daily living, with the cylinder. In relation to an insulin pump, Mr Young is able to undertake all activities of daily living, and to participate in the community, whether using needles to inject himself, or the more convenient, concealed pump.
4. Turning to whether the oxygen concentrator and insulin pump are clinical treatment, we do not accept, because they are different methods of delivering oxygen and insulin, that their essential character as clinical treatment changes. The treatment of Mr Young's health conditions is still their primary purpose, and Dr Worboys and Dr Virgona support his use of both to help manage his chronic health conditions and improve his health overall.
5. The fact that insulin and needles, and Mr Young's current oxygen supplies, are funded or subsidised under the health system, and that insulin pumps are fundable under private health insurance (and for juveniles under the health system), supports our conclusion that they are the responsibility of, and more appropriately funded through, the health system.
6. Mr von Einem submitted that, because funding is not available to Mr Young for an oxygen concentrator or an insulin pump though the mainstream health system, they are "most appropriately funded or provided" through the NDIS. We do not agree.
7. 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).
8. In relation to the insulin pump, Mr Young currently has an insulin pump which was funded by his private health insurance. It remains under warranty until some time in 2015 and the manufacturer continues to provide batteries free of cost every three weeks. It makes no sense to us so say that he has a current need for funding through the NDIS for this support. The remaining cost to Mr Young associated with his diabetes is the provision of consumables being replacement cannulas, testing strips and needles. These items are subsidised under the NDSS leaving Mr Young with a monthly cost of approximately $40.00. For the reasons we have already given, these supports are more appropriately funded or provided through the general health system.
9. At the conclusion of the hearing we were invited by both representatives to indicate whether insulin pumps should, as a rule, be funded or provided through the NDIS. We would prefer to decline that invitation. We think each application should be treated on its merits.

1. Mr Young told us that, during a mock interview before the commencement of the NDIS, NDIA staff told him that the NDIS would fund a portable oxygen concentrator and an insulin pump. He feels aggrieved that the NDIA has now refused his request. We accept what Mr Young says and understand his grievance but we are bound to apply the legislation as we interpret it.
2. For the reasons we have given, we affirm the decision under review.

I certify that the preceding 45 (forty -five) paragraphs are a true copy of the reasons for the decision herein of Senior Member Jill Toohey and, Senior Member John Handley

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Mr Ben Von Einem - Villamanta Disability Rights

Ms Leah Kateiva - Regional Information & Advocacy Council Inc

Mr Michael Sassella - National Disability Insurance Agency