QXDY and National Disability Insurance Agency

QXDY and National Disability Insurance Agency [2020] AATA 4180 (19 October 2020)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2019/5450
Re:QXDY
APPLICANT

AndNational Disability Insurance Agency
RESPONDENT

DECISION
Tribunal:
Date:19 October 2020
Place:Sydney

The reviewable decision dated 25 July 2019 is varied to include one dance class per week as a reasonable and necessary support for the applicant.
.........................[SGD]...............................................
The Hon. John Pascoe AC CVO, Deputy President
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – whether condition has been conclusively diagnosed – whether supports relate to the participant’s disability – whether supports could be harmful to the participant’s condition – National Disability Insurance Scheme Rules – decision varied
LEGISLATION
National Disability Insurance Scheme Act 2013 (Cth) ss 3, 4, 21, 33, 34, 100
Administrative Appeals Tribunal Act 1975 (Cth) s 42D
CASES
McGarrigle v NDIA (2017) 252 FCR 121
SECONDARY MATERIALS
National Disability Insurance Scheme (Supports for Participants) Rules 2013, r 3.1, 3.2, 3.3, 3.4, 3.5, 3.6, 3.7
REASONS FOR DECISION
The Hon. John Pascoe AC CVO, Deputy President
19 October 2020
JUDGEMENT
SUMMARY

The applicant in these proceedings is eight years old. She is represented by her mother and assisted by a disability advocate. The applicant has two brothers who are also participants in the National Disability Insurance Scheme (‘the Scheme’).
The documents provided in support of the applicant’s application refer to diagnoses of Autism Spectrum Disorder (Level 1), Solar Urticaria and Chronic Eczema.
On 26 January 2017, the applicant was transitioned from an existing New South Wales State scheme to the Scheme under section 21(2) of the National Disability Insurance Scheme Act 2013 (Cth) (‘the Act’). Access to the scheme was granted on 6 March 2017. The Agency was not provided with any underlying diagnostic records supporting the conditions for which the applicant claimed in the New South Wales scheme.
The applicant’s first plan was for the period 26 February 2019 to 26 February 2020 for the amount totalling $9,251.51 (‘First Plan’).
On 15 April 2019, the applicant’s mother requested a review under section 100(2) of the Act of the decision to approve the statement of participant supports in the First Plan.
The reviewable decision dated 25 July 2019 increased the Capacity Building Budget for Therapeutic Supports, funding for an Orthotic Assessment and increased Support Coordination funding. The First Plan was varied, and a new plan was issued for the period of 26 July 2019 to 27 July 2020, with a total amount of $10,740.52 (‘Second Plan’).
The applicant has sought review of the Reviewable Decision by proceedings filed in the Administrative Appeals Tribunal (‘the Tribunal’) on 2 September 2019.
Subsequent to the review application filed with the Tribunal, the respondent agreed to provide a number of further supports requested by the applicant. On 24 July 2020, the parties executed a consent order for remittal under section 42D(1) of the Administrative Appeals Tribunal Act 1975 (Cth), where a new plan containing further supports was issued on 29 July 2020 (‘Current Plan’).
The applicant currently seeks the following supports, being the matters in dispute before the Tribunal:
(a)funding for an outdoor, shaded trampoline, specifically a Vuly “Thunder Pro” trampoline with a “Shade Cover” and “Tent”;
(b)funding to attend indoor swimming lessons;
(c)funding to attend seven dance classes per week;
(d)funding for a support worker for morning and afternoons;
(e)funding for “domestic assistance”; and
(f)“transport”.
LEGISLATION
The objects of the Act as set out in section 3 of the Act make particular reference to the purpose of the Scheme providing reasonable and necessary supports. Specifically, subsection 3(1) provides:
The objects of this Act are to:
(a)in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008] ATS 12); and
(b) provide for the National Disability Insurance Scheme in Australia; and

(c) support the independence and social and economic participation of people with disability; and

(d) provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch; and

(e) enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and

(f) facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability; and

(g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community; and

(ga) protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services provided under the National Disability Insurance Scheme; and

(h) raise community awareness of the issues that affect the social and economic participation of people with disability, and facilitate greater community inclusion of people with disability.
(i) in conjunction with other laws, give effect to certain obligations that Australia has as a party to:
(i) the International Covenant on Civil and Political Rights done at New York on 16 December 1966 ([1980] ATS 23); and
(ii) the International Covenant on Economic, Social and Cultural Rights done at New York on 16 December 1966 ([1976] ATS 5); and
(iii) the Convention on the Rights of the Child done at New York on 20 November 1989 ([1991] ATS 4); and
(iv) the Convention on the Elimination of All Forms of Discrimination Against Women done at New York on 18 December 1979 ([1983] ATS 9); and
(v) the International Convention on the Elimination of All Forms of Racial Discrimination done at New York on 21 December 1965 ([1975] ATS 40).
Reasonable and necessary supports are also referred to in the “General principles guiding actions under this Act” outlined in sections 4(5) and 4(11) of the Act.
Section 33(2) of the Act requires that a participant’s plan include a statement of participant supports that specifies, amongst other things, “the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme”.
In relation to the matters that the decision-maker must be satisfied of for the funding or provision of supports, section 34(1) provides:
(1)       For the purposes of 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 must be satisfied of all of the following in relation to the funding or provision of each such support:
(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.
Section 34(2) authorises the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (‘NDIS Rules’) to prescribe “methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (1)(a) to (f)”. The NDIS rules include a number of rules relevant to this proceeding, which are set out below.
Rule 3.1 of the NDIS Rules, under the heading “Value for money”, provides:
In deciding whether 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, the CEO is to consider the following matters:
(a)       whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b)       whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long-term benefit to, the participant;
(c)       whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d)       for supports that involve the provision of equipment or modifications:
(i)        the comparative cost of purchasing or leasing the equipment or modifications; and
(ii)       whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e)       whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f)        whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
Rules 3.2 and 3.3, under the heading “Effective and beneficial and current good practice”, provide:
3.2 In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:
(a)       published and refereed literature and any consensus of expert opinion;
(b)       the lived experience of the participant or their carers; or
(c)       anything the Agency has learnt through delivery of the NDIS.
3.3   In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.
Rule 3.4(a), under the heading “Reasonable family, carer and other support”, provides:
3.4 In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:
(a)       for a participant who is a child:
(i)        that it is normal for parents to provide substantial care and support for children; and
(ii)       whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii)      the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv)      whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
Rule 3.5, under the heading “Supports appropriately funded or provided through the NDIS”, identifies that Schedule 1 contains “matters for the CEO to have regard to”. Rules 3.6-3.7 deal with the interaction of the NDIS Rules with section 34(1)(a)-(e).
30.      Rules 5.1 and 5.2 (under the heading “General criteria for supports”) provide:
5.1 A support will not be provided or funded under the NDIS if:
(a)       it is likely to cause harm to the participant or pose a risk to others; or
(b)       it is not related to the participant’s disability; or
(c)       it duplicates other supports delivered under alternative funding through the NDIS; or
(d)       it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.
5.2 The day-to-day living costs referred to in paragraph 5.1(d) do not include the following (which may be funded under the NDIS if they relate to reasonable and necessary supports):
(a)       additional living costs that are incurred by a participant solely and directly as a result of their disability support needs;
(b)       costs that are ancillary to another support that is funded or provided under the participant’s plan, and which the participant would not otherwise incur.
ISSUES
The issue in this proceeding is whether the supports that are in dispute between the parties are reasonable and necessary supports within the meaning of section 33(2)(b) of the Act, such that they may be included in the applicant’s plan. In considering whether the disputed supports are reasonable and necessary in accordance with the Act, I have had regard to:
(a)whether the supports satisfy the criteria in section 34(1) of the Act; and
(b)whether, if all those criteria are satisfied, the supports are still considered “reasonable and necessary” within the meaning of section 33(2) the Act.
THE EVIDENCE
Applicant’s mother’s evidence
The applicant’s mother provided a statement of lived experience dated 14 August 2020 and another undated statement of lived experience, which were confirmed and relied upon at the hearing. I note that with the applicant’s mother’s permission, Professor M, one of the respondent’s expert witnesses, was able to listen to her evidence at the hearing.
In her evidence, the applicant’s mother said that the applicant’s diagnosis of solar urticaria was well established. The applicant’s condition had largely been managed by minimising the applicant’s time outdoors, in fluorescent lighting and through treating her with antihistamines, amongst other things. The applicant’s mother said that the applicant had also been diagnosed with Autism Spectrum Disorder (‘ASD’), Photo aggravated eczema, Post Traumatic Stress Disorder (‘PTSD’) and asthma.
When questioned by counsel for the respondent, the applicant’s mother gave details as to the moisturisers that she uses for the applicant along with topical steroids, although the mother said she tried to limit the use of steroids given the side effects of such medication. The mother applied sunscreen and zinc to the applicant every two hours. She said that she also gives the applicant a hydrotherapy spa bath every night and if her eczema is too severe, she utilises a handheld shower. She also said that when the applicant’s eczema was particularly severe, they used bleach baths.
The applicant’s mother said that the applicant’s condition began to show shortly after birth and that she had sought medical advice at an early stage.
Immune suppressants had been trialled by Doctor R, the applicant’s treating dermatologist at the time, but were stopped about three years ago because of the expense and possible long-term side effects.
When the applicant was around five years of age, the applicant’s mother decided to manage her condition with her local General Practitioner (‘GP’), Dr L. She said that managing the condition through the current treatment plan with her GP has assisted the applicant in staying out of hospital and has also meant that she does not have to organise the drive with her three children with special needs alongside arranging any necessary accommodation whilst seeking this treatment.
The applicant’s mother was strongly of the opinion that the initial diagnosis of solar urticaria was correct and put to the Tribunal that no weight should be given to the diagnosis of the respondent’s experts who had not seen the child, but rather made their diagnosis from publicly available material, including photographs posted on the internet. The mother said that she was not interested in the diagnosis of experts who had never actually met the applicant or had the opportunity to examine her.
A number of photographs were referred to by the applicant’s mother which she said showed welts developed after sun exposure and were indicative of the applicant’s solar urticaria as opposed to eczema. The applicant’s mother said that not all the pictures contained in the publicly available articles showed the applicant’s solar urticaria. The applicant’s mother also disputed the expert’s analysis of the photographs before the Tribunal, for instance that Professor M’s text accompanying one of the photographs stated that the applicant was outdoors when she was actually in front of a wall at the hairdressers.
She referred to some of these photographs that were taken in a restaurant after the applicant had been exposed to light from the fluorescent lights in the restaurant, which ultimately led to her being hospitalised. She said that this was a result of her solar urticaria. There were also pictures before the Tribunal of the applicant hospitalised after this incident.
When questioned as to why the applicant had not had her condition managed through the process of ‘hardening’, which would allow a child with solar urticaria to slowly adapt to sunlight and increase their resilience to sun exposure, the mother said it was not fair that the applicant should go through this treatment as she understood there was evidence that this process may not actually work. Further, in the mother’s view, the benefits may not outweigh the risks.
The applicant’s mother said she preferred her own judgement alongside that of her GP who had been treating the applicant for some years, and that they had agreed they did not want to put the applicant through hardening treatment. Rather, they felt that it was up to the applicant to make this decision once she was older. The mother considered the applicant was being adequately managed with a skin suit and the application of medication as required, and this management has consequentially limited the amount of times the applicant was hospitalised as a result.
The applicant’s mother was referred by counsel for the respondent to a phone call between herself and a decision maker from NDIS dated 26 July 2019, where the decision maker went through the reasons for their decision and outlined the list of medical documents (which were also set out in the decision record) that the respondent had before it in assessing the applicant’s condition. It was conveyed to the mother that the material did not include an updated letter or diagnosis from a dermatologist of the applicant’s solar urticaria, which the applicant then said the respondent had lost along the way. The applicant’s mother largely agreed with what was set out in that record of phone conversation.
The applicant’s mother was referred to correspondence between the respondent and herself, where the respondent had asked that the applicant be taken at their expense to Professor M for the applicant to get an up-to-date diagnosis. This request was not agreed to by the applicant’s mother in her email correspondence, as she felt that it was not necessary to go through the process of getting a new diagnosis.
Under cross-examination, the mother gave evidence that the applicant’s dance lessons had, at least in part, been paid for by the applicant’s biological father. However, she said she received little if any support overall from the father and was extremely burnt out caring for three children with additional needs. She described the difficulties she had in managing all her children’s conditions as a single parent and the issues she experienced on a day-to-day basis.

I found the applicant’s mother to be an honest witness and a caring and loving parent who focused on what she considered to be the best interests of the applicant.
Professor M’s evidence
Professor M is a highly qualified medical practitioner. A statement of her experiences and qualifications was provided to the Tribunal, which occupied many pages. She is internationally qualified and recognised in treating skin conditions and educating other specialists. Part of Professor M’s expertise was the training of medical students in recognising and treating solar urticaria and other rare skin conditions.
Professor M gave evidence that solar urticaria is an extremely rare skin condition, especially in children. She said in her expertise the disease was primarily seen in adults and that children usually have other allergies that might look like solar urticaria but that the only way to properly diagnose the condition would require specific photopatch testing against different wavelengths of light to establish solar urticaria and blood tests to rule out other possibilities.
Professor M said that she was aware of Dr R. Professor M said he was a well-qualified dermatologist who still saw patients for free in the public health system.
Professor M said she had seen the photographs of the applicant publicly accessed on the internet and those provided subsequently by the applicant’s mother and said that she did not believe they showed the presence of solar urticaria.
Professor M was of the opinion that if the child did not have solar urticaria, then the treatment being given to the child was not optimal. She said that the skin suit could be harmful if the child does not have solar urticaria and could lead to low Vitamin D levels and long-term osteoporosis. Professor M said that if the applicant did have solar urticaria the proper treatment was ‘hardening’, which would mean that the applicant would eventually be able to go out into the sunlight for increasing periods of time. Professor M also gave evidence of the treatment for severe eczema.
Professor M was questioned by counsel for the respondent as to the documentation which the mother provided in relation to the diagnosis of solar urticaria. She confirmed that there had been a machine available to carry out this testing in Sydney for some 20 years and that it was essential to have this test in order to diagnose solar urticaria.
Professor M said that she had examined and excluded more than a hundred children from a diagnosis of solar urticaria who had other forms of urticaria or similar conditions, particularly atopic dermatitis which is common in Australian children. When questioned by the applicant, Professor M said that she and her colleagues had only seen one diagnosis of a child with solar urticaria. Professor M said that she felt quite confident in her conclusion that the applicant did not have solar urticaria, despite the fact that she had not seen the child.
Ms H’s evidence
Ms H gave evidence that she was a qualified Occupational Therapist (‘OT’) and that she regular sees the applicant in her consulting rooms. She has worked with the applicant since March 2018 and provided four reports from April 2018 to March 2020.
Ms H gave evidence that the use of a trampoline would be useful for a child with ASD and could help the applicant regulate and organise her behaviour and activity levels. She said that having more adaptive movement experiences and linear movement experiences may also help to organise the applicant’s behaviour.
Ms H gave evidence that it was important for children with ASD to be part of a social group, which could include group activities like dancing. She said that the applicant enjoyed dancing and that regular lessons were important in assisting both socially and in regulating the applicant’s behaviour.
Ms H said that it was essential for children to learn to swim, particularly in Australia, but she was not sure that one on one lessons were more appropriate or necessary for the applicant as opposed to group lessons.
Ms H said that the applicant had low self-care skills and, in her view, she needed greater support, including extra support for the applicant’s mother who is the applicant’s carer. This could extend to the reasonable employment of a support worker to assist the applicant’s mother in managing the applicant.
Ms H said that her assessment of the applicant and the supports required was based partly on the diagnosis of solar urticaria but was also based on her diagnosis of ASD. She agreed that if the child did not have solar urticaria, less support might be needed.
Ms H said that having access to a trampoline was not necessarily related to a diagnosis of solar urticaria but could be useful for the applicant’s regulation for her ASD, especially in circumstances where the applicant’s siblings also have a disability. She thought a swing might be useful but would not replace a trampoline. Ms H acknowledged that her report supporting the recommendation of a trampoline did not contain collaborating medical evidence or studies on the usefulness of a trampoline for ASD or solar urticaria.
In relation to dance classes and swimming she felt that this was appropriate on a normal social basis. She thought weekly attendance at dancing would be useful and that one time per week was sufficient, based on her experience with the applicant. Ms H said that dancing is something the applicant enjoys; it is regulating in that it is ordered and predictable and allows the applicant to focus on a set number of actions. Ms H said that if the applicant did not have solar urticaria she did not see the need for indoor swimming lessons.
Ms H said that she felt that regular support for the applicant’s mother would also be useful. She could not quantify a particular sum of hours for this but thought that support could be useful several times per week.
Ms H confirmed that she had not seen any recent psychiatric reports or evaluations and that the last report from a psychiatrist she had reviewed was from Mr A, psychologist, in May 2018. When questioned by counsel for the respondent, Ms H confirmed that she did not have any experience in either dermatology or psychiatry but had extensive experience as an OT with children.
Professor S evidence
Professor S provided a detailed report to the Tribunal dated 18 August 2020 and a follow up email dated 15 September 2020 which was relied upon at the hearing. He is a well-qualified and highly experienced dermatologist.
When showed the various photographs of the applicant at the hearing, Professor S said that in his opinion the photographs did not show solar urticaria but that he believed the skin issues shown were atopic dermatitis. When shown a photograph of the applicant’s face at the time of the restaurant incident, Professor S said that the problem looked like atopic dermatitis and that her puffy face was typical of atopic dermatitis. Professor S also referred to photos on the applicant’s trunk, which he said he did not believe showed solar urticaria but rather normal urticaria on areas exposed to the sun.
Professor S said that all of the photographs he was shown were typical of patients with conditions of atopic dermatitis. Professor S said that he had not diagnosed a child with solar urticaria. He said that solar urticaria is extremely rare, particularly in children.
He said that the causes of urticaria involved an allergic issue and that sometimes the underlying causes were not found. Professor S said that in order to make a clear diagnosis of solar urticaria it was necessary to have specific photopatch testing using a specialised machine to test with wave lengths of light. He said that he has his “doubts about the diagnosis and would not be able to comment unless [the applicant’s] solar urticaria was fully diagnosed and investigated as to which wavelength is likely to be the cause.”
When questioned about the hardening treatment, Professor S said that this involved exposing individuals to appropriate wave lengths for a short period of time, which was usually around one minute or so, and gradually increasing the time they were exposed to the sun. He said that hardening is the usual treatment for solar urticaria.
Professor S felt that keeping the applicant out of the sun was not of benefit for her long-term. He said the applicant needed to see a dermatologist to get a new diagnosis and a new and updated treatment plan. Professor S said that if a child was kept out of the sunlight, Vitamin D supplements may be necessary.
Professor S said it was not appropriate to rely on the reports of Dr R from 2017 because of the time which had elapsed. He also noted that the letter was not addressed to a treating doctor, but rather “to whom it may concern”. He felt that the letter was most likely made at the request of the family.
When questioned by the applicant about the medications prescribed by Dr R and whether prescribing those was an indicator of solar urticaria, Professor S confirmed that the medications being given to the applicant were those used for atopic dermatitis and he was not aware of those medications being used for a child with solar urticaria. Rather, the treatment for solar urticaria was antihistamines and hardening. He would not use immune suppressant medication.
When questioned about swimming lessons for the applicant, Professor S said that he felt that indoor chlorinated pools would be harmful to her skin. His advice to his patients with atopic dermatitis was that they should not swim in a chlorinated pool.
When questioned about the proposed trampoline funding, Professor S said that he had looked at the trampoline shade and that, in his view, the shade only prevents direct exposure to UV light and would allow some light to come through the shade which may exacerbate solar urticaria if this was the applicant’s condition. This could have harmful effects for a child who has solar urticaria.
Under cross-examination, Professor S agreed that there were limitations to only being able to see the applicant through pictures that had been sent to him. He also said that he had never made a diagnosis from google images and agreed with the applicant that Dr R was a reputable dermatologist.
When questioned by counsel for the respondent, Professor S said that he believed the applicant had severe atopic dermatitis as opposed to solar urticaria and that his opinion was not affected by the fact he had not seen the child.
Dr L’s evidence
Dr L, consultant psychiatrist, provided a report to the Tribunal dated 10 August 2020 in relation to the applicant’s ASD specifically.
Dr L noted that there is sufficient history to suggest that the diagnosis of ASD is likely to be applicable to the applicant on the balance of probabilities. However, his report notes that, in the absence of a more recent evaluation of the applicant’s symptoms and profile, he is “unable to comment specifically in relation to what symptoms clusters may be causing her current disability.”
The supports Dr L identified for the applicant for her ASD was “a group based social skills training program, facilitated by an appropriately trained psychologist or clinical psychologist” and, for the trauma-related disorder if still present, “up to 16 sessions of trauma focussed cognitive behaviour therapy”.
Dr L said in his report that there may be some benefit from the applicant “being able to engage socially with other children in an environment that does not precipitate exacerbations of her skin condition”. Therefore, he was of the opinion that indoor swimming lessons and dance lessons, if provided in a group setting, may allow the applicant to practice social skills. He did not believe that an outdoor trampoline would contribute to facilitating this treatment outcome.
Although Dr L was available for questioning, the applicant’s mother said she did not have any questions in relation to the report Dr L provided to the Tribunal. I note that although the mother said that she did not have any questions for Dr L, she also said that she fundamentally disagreed with everything he had written in his report.
OTHER EVIDENCE
The applicant’s mother provided a range of medical letters that she had received in relation to the applicant dating from 2013, which I have considered.
Dr B, Dermatologist / Dermatological Surgeon, wrote a letter dated 28 October 2013 outlining that the applicant “suffers from severe and difficult to control atopic dermatitis”, which is further complicated by that fact that it is “photosensitive” and there is a “photo aggravation of the condition” with exposure to the sun.
Furthermore, Dr E B, Consultant Paediatrician, wrote a letter dated 4 November 2013 certifying that the applicant “has a severe eczema that is triggered by sunlight. It is vital that her exposure to sunlight be kept to an absolute minimum”.
Dr R, the applicant’s previous treating Dermatologist, wrote a medical report dated 15 August 2014. In this report, Dr R said:
This young child has a debilitating skin condition making [the applicant] extremely sensitive to light. This condition of solar urticaria results in [the applicant] developing welting reaction on exposed skin after relatively minimal exposure to the sun.
He also said that the impact of this condition is exacerbated by the fact that the applicant also suffers severe eczema.
Dr D, Consultant Paediatrician, wrote a letter dated 21 June 2017, where he states that the applicant has a “confirmed diagnosis of autism spectrum disorder as per DSM-V. She also suffers from rare skin condition known as solar urticaria. In addition, she has chronic eczema with intermittent flare ups”.
Dr L, General Practitioner, wrote a letter dated 25 October 2019 and 6 February 2020, where she provided her recommendations to prevent the recurrence of the applicant’s allergies and anxieties that accompany these experiences on the basis of diagnosis including solar urticaria. Her recommendations involved a second skin suit, a swing, a trampoline, blockout blinds, indoor swimming lessons and a support worker for the home.
THE JUDGEMENT
The respondent disputes that any of the following supports, namely funding to attend indoor swimming lessons, funding to attend seven dance classes per week, funding for an outdoor, shaded trampoline, specifically a Vuly “Thunder Pro” trampoline with a “Shade Cover” and “Tent”, funding for “domestic assistance” (3 hours per week), funding for a support worker for morning and afternoons and “transport”, satisfy the criteria set out in section 34(1) of the Act and states that they are also excluded by rule 5.1 of the NDIS Rules. The Tribunal must consider that, even if the criteria set out in the Act are satisified for the above contested supports, the supports must still be considered “reasonable and necessary” in the applicant’s individual circumstances.
The applicant’s dermatological condition
In looking at the various supports in question and whether they are reasonable and necessary for the applicant, the first question for the Tribunal as to whether the applicant has properly been diagnosed with solar urticaria is critical. If the applicant does not have solar urticaria but rather another dermatological condition such as atopic dermatitis, then some of the supports claimed may not be reasonable or necessary in accordance with the Act and may also be harmful to the child.
The question for the Tribunal is whether the support is reasonable or necessary for the particular participant and their circumstances (McGarrigle v NDIA (2017) 252 FCR 121 at 141 [89]-[91] per Mortimer J). It follows that it cannot be said that a particular support is reasonable or necessary or in fact not harmful unless there is a clear diagnosis of the condition for which the supports are being provided. The difficulty in this case is that the weight that the Tribunal can give to the evidence of the medical experts is, for different reasons, limited.
The applicant’s mother has provided medical reports and letters which state that the applicant has solar urticaria. The documentation, particularly from the applicant’s dermatologist, is old and does not demonstrate any formal diagnosis of the condition, notably given that there is a general consensus by the medical experts that photopatch testing is needed to conclusively determine whether an individual has solar urticaria, which has not been conducted.
Expert evidence was given on behalf of the respondent by both Professor M and Professor S that the applicant does not, in their opinion, have solar urticaria. Both believed that the applicant’s symptoms, as indicated in the various reports, photographs and evidence, was consistent with atopic dermatitis. Both experts gave clear evidence which was not disputed that the only way to diagnose solar urticaria was specific testing against different wavelengths of light on a specialist machine to establish solar urticaria and blood tests to rule out other possibilities. Both experts also gave very clear evidence that a diagnosis of solar urticaria is extremely rare in children, especially in Australia.
The qualifications of both Professor M and Professor S mean that they are well qualified to provide evidence from their experience that solar urticaria can only be properly diagnosed by using the specialist machine indicated to rule out other conditions and that the current medical treatment of solar urticaria is through the process of ‘hardening’. I also accept their medical evidence that the treatments currently being provided to the child are consistent with severe atopic dermatitis.
In accepting this evidence of Professor M and Professor S, I do not discount the diagnosis given by Dr R and relied upon by the applicant’s mother. The applicant’s mother gave evidence that at the time of Dr R’s diagnosis the machine required to confirm the diagnosis of solar urticaria was not available and I accept her evidence. It is apparent that Dr R made what he thought was the best diagnosis at the time and that the applicant’s mother, quite appropriately in my opinion, acted in accordance with that diagnosis. I find that the applicant’s mother has done everything she can to provide the best care for the applicant at great personal cost physically, emotionally and financially.
It is of concern that the respondent’s medical experts were only able to assess the applicant’s condition based on publicly available images and a few images provided by the applicant’s mother rather than assessing the applicant in-person or for an extended period. Accordingly, there are limitations as to the extent that the Tribunal can rely on the evidence of Professor M, Professor S and Dr L, and these reports should not form the basis of a formal diagnosis.
On this basis, the Tribunal can only give more limited weight to the evidence of Professor M and Professor S as to the applicant’s dermatological condition than would be the case if they had had the opportunity to physically examine the applicant. The Tribunal can similarly, however, only place limited weight on the evidence of Dr R’s diagnosis that was made some three years ago and did not have the benefit of photopatch testing. However, I place considerable weight on the fact that the experts agreed that there can be no formal diagnosis of solar urticaria without light testing which has not, at any stage, been carried out.
It is of concern, although perhaps understandable in all the circumstances, that when offered an appointment with Professor M at the cost of the respondent the mother did not chose to accept it. Attending such an appointment would no doubt have involved considerable inconvenience to the mother, particularly given she has two other children with special needs. There is also the fact that the child is only eight years old and that travelling to see specialists, undergoing physical examination and having to tell her story again would be extremely stressful to her, particularly as the applicant has a history of interventions that can be triggering.

Accordingly, on the basis of the evidence presented to the Tribunal I cannot be satisfied that the applicant has properly been diagnosed as suffering from solar urticaria rather than atopic dermatitis. Given that the treatment for each condition may be quite different, I cannot be satisified that some of the proposed supports that are specifically in relation to the applicant limiting sun exposure meet the test set out in section 34(1) of the Act in relation to solar urticaria. Indeed, on the basis of the evidence of both Professor M and Professor S, some of the activities such as the trampoline and indoor swimming lessons may not only be unreasonable or not necessary but may also be harmful to the child. The possibility of harm would engage rule 5.1 of the NDIS Rules and would mean that such supports must be excluded, even if as Ms H says a trampoline may be beneficial for the child’s ASD. I will now consider each of the supports in question under the relevant legislative framework.
Trampoline funding
The applicant’s mother requested a $3,085.00 Vuly “Thunder Pro” trampoline including additional covers and a tent for the applicant. The applicant’s mother said in her written statement that she seeks the more expensive model than the one proposed initially by the respondent, because it provides a 10-year warranty and the “Thunder Pro is more sturdy with the dual ring frame versus the U-shaped legs of a trampoline”, among other reasons such as the quality of the material and netting made of soft terylene.
The applicant’s mother said that the trampoline was beneficial for the applicant’s condition as the applicant cannot attend the park like other children her age due to her solar urticaria. The applicant’s OT and GP also recommended the trampoline on the basis of the applicant’s condition of solar urticaria and ASD.
Although Ms H gave evidence that the trampoline might be useful in relation to the applicant’s ASD, the evidence of Professor M and Professor S was that the trampoline, even with the canopy, would expose the applicant to some forms of light which could be harmful to her depending on the proper diagnosis of her skin condition.
Moreover, even if the trampoline was not harmful, I am not satisified that funding for the Vuly “Thunder Pro” trampoline meets all the requirements of section 34(1) of the Act, which I have outlined below.
Firstly, it does not appear that the trampoline is specifically linked to the applicant’s goals, objections and aspirations included in her statement of goals and aspirations (section 34(1)(a) of the Act).
Secondly, in the absence of clear medical evidence and an updated diagnosis to support the applicant’s condition as solar urticaria, I am not satisified that the use of a trampoline will allow the applicant to do activities that she otherwise could not do such as going to the park, if she were able to have sun exposure (section 34(1)(b) of the Act).
Thirdly, both Professor M and Dr L were of the opinion that the requested trampoline is unrelated to the applicant’s condition, both in relation to her solar urticaria and ASD. I do note, however, that Ms H gave evidence to the Tribunal that, from her experience as an OT working with the applicant, the trampoline could be useful for the applicant’s condition of ASD in regulating her behaviour. However, there is no evidence before the Tribunal to support that the trampoline with the sun roof represents value for money in the applicant’s circumstances, particularly given the expert medical reports that the trampoline is not clearly linked to the applicant’s condition or treatment, whether she has solar urticaria or not (section 34(1)(c) of the Act).
Fourthly, there was no objective evidence before the Tribunal that the trampoline would be, or would be likely to be, effective and beneficial to the applicant having regard to good practice (section 34(1)(d) of the Act). Dr L for instance noted that:
whilst some young people with Autism Spectrum Disorder may benefit from specific sensory modulation strategies tailored to their unique sensory profile, the writer is not familiar with any specific strategies that involve the use of a trampoline.
Rather, Professor S gave evidence that if the applicant does have solar urticaria, the outdoor trampoline, even with the shade shelter, would be likely aggravate her skin condition. Rule 5.1(b) could therefore exclude funding for the trampoline if the applicant has solar urticaria.
Finally, the trampoline may be expected to be a living expense provided by families in circumstances where it is not clearly linked to the applicant’s conditions (section 34(1)(e)).
In light of the above considerations that I am required to consider under the Act, I am of the view that the support does not satisfy all the criteria set out in section 34(1) of the Act and may also be excluded under rule 5.1(b), given that it could have an adverse effect of the applicant’s skin condition.
Indoor swimming lessons funding
The applicant’s mother also seeks funding for indoor one on one swimming lessons for the applicant.
Ms H gave evidence that, in her opinion, one on one swimming lessons were not necessary in the applicant’s circumstances, regardless of the applicant’s diagnosis. This was further substantiated by Dr L, who noted that if the swimming lessons “occur on an individual (i.e. one teacher to one student) basis, then the writer considers that the utility of such activities as part of social skills training would be very limited”.
Professor S gave evidence that indoor swimming lessons (in a heavily chlorinated pool) may also exacerbate the applicant’s skin condition particularly if she had atopic dermatitis.
In the absence of a proper diagnosis and in light of Professor S’s evidence which I accept, indoor swimming lessons may be of limited benefit and/or may be harmful to the applicant so as not to be a reasonable or necessary support.
Furthermore, the swimming lessons would, in my opinion, not satisfy all of the criteria set out in section 34(1) of the Act.
Firstly, it is not clear that indoor swimming lessons will assist the applicant to pursue her goals, objectives and aspirations included in her statement of goals and aspirations (section 34(1)(a) of the Act).
Secondly, I am not satisified that the swimming lessons will assist the applicant to undertake activities she could not have otherwise, so as to facilitate her social and economic participation, particularly without clear medical evidence that the applicant has solar urticaria so as to prevent her from undertaking certain activities that involve exposure to the sun. Moreover, there is further medical evidence before the Tribunal that the chlorine and high pool temperature may exacerbate the applicant’s skin condition (section 34(1)(b) of the Act).
Thirdly, it is unclear what the applicant’s swimming lessons would entail, or the cost of these lessons, so as to reasonably ascertain whether the support would represent value for money relative to the benefits achieved for the applicant. The applicant has not provided evidence justifying swimming lessons on any medical basis. Rather, the 6 February 2020 report of GP Dr L stated that “indoor swimming lessons are also a necessary adjunct for [the applicant]. Learning to swim is essential in Australia and the chlorine is noted to be safe for her skin.” However, Professor M stated that swimming is “not part of routine management of solar urticaria” and did not identify any benefit to the applicant from swimming lessons. In particular, she did not believe that lessons would reduce other supports for the applicant long term and has not expressed a view that they would increase her independence or reduce the need for other supports (section 34(1)(c) of the Act).
Fourthly, when considering the above medical experts such as Professor M’s report, it is clear that indoor swimming is not routinely considered best practice to achieve effective and beneficial outcomes for the applicant. Furthermore, the swimming may also be potentially harmful or aggravate the applicant’s skin condition (section 34(1)(d) of the Act).
Fifthly, in considering what is reasonable to expect families to provide, swimming lessons (whether indoor or outdoor) are something that is usually considered to be provided by families for their children. There does not appear to be expert medical evidence to suggest that the applicant’s risk is substantially greater than children her age so as to require swimming lessons for her diagnosed conditions (section 34(1)(e).
In light of the above considerations, I am of the view that the one on one indoor swimming lessons funding does not satisfy all the criteria set out in section 34(1) and may be harmful under rule 5.1(b), particularly if the applicant has atopic eczema.
Dance class funding
There is no evidence that attending dance classes would be harmful to the applicant’s skin condition, whether that were solar urticaria or atopic dermatitis, particularly given the specific lighting used in the dance studio.
There is evidence before the Tribunal that dance classes would be beneficial to the applicant for her condition, including her ASD. Ms H said that the applicant’s ASD means that she would benefit from regular attendance and social activity with other children. She confirmed in her evidence that dancing would be of benefit to the applicant’s development and special needs, irrespective of whether the applicant had solar urticaria.
Moreover, Dr L also noted that there may be some benefit for the applicant being able to engage socially with other children in an environment that does not precipitate exacerbations of her skin conditions in a group setting, particularly in practicing social skills.
On the evidence provided, I have considered the criteria set out in section 34(1) of the Act in determining whether the dance classes are reasonable and necessary in accordance with the Act.
Firstly, in regards to the applicant’s ASD and dance lessons, I accept the evidence of Ms H which is supported by the evidence as to the child’s aspirations in life, namely “‘to be supported in my dreams to be a dancer and singer when I grow up”, so as to satisfy section 34(1)(a) of the Act.
Secondly, there is support for the proposition that the applicant would benefit socially from regular activities with other children and that this is particularly so given her ASD, as evidenced in Ms H’s evidence to the Tribunal after treating the applicant over an extended period of time since March 2018, which is correlated with Dr L’s evidence. I accept Ms H’s evidence that this support will facilitate the applicant, particularly in her social participation (section 34(1)(b) of the Act).
Thirdly, I note the evidence from Dr L that the dance lessons would only be of use if they were part of the applicant’s social skills training and occur “as part of a comprehensive group based social skills training program supervised by an appropriately trained psychologist and clinical psychologist”. Whilst I acknowledge Dr L’s report, I also accept Ms H’s evidence that through her experience with the applicant, dancing would be of benefit to her development and special needs, particularly in her social development. In the applicant’s mother’s statement of lived experience, she provided links to a range of evidence supporting Ms H’s evidence on the benefits of dance to neuroscience and conditions such as ASD.
However, I also accept Ms H’s evidence that dance classes do not need to occur more than once per week to be a reasonable and necessary support for the applicant. Regular social activity within a supportive environment would, in my view, clearly meet the criteria in rule 3.1. However, I am not satisified on the evidence that seven dance classes a week would not be reasonable or of value. Rather, attendance at such classes once per week as recommended by Ms H would, in my opinion, be beneficial for the child and would provide value for money, is reasonable in the applicant’s circumstances and is best practice given her social isolation and aspirations to be a dancer (section 34(1)(c) and (d) of the Act).
Fifthly, I find that in the applicant’s circumstances it is not reasonable to expect the family to fund all the applicant’s dance lessons, particularly as they relate to the applicant’s special needs. In this regard, I note the mother’s statement of lived experience, where she states as follows:
I am financially strained with day to day costs, I am unable to work and struggle to simply pay for the basics and ongoing medical costs. [The applicant] is quite behind other children her own age, and despite the agency's views is unable to attend other activities other children would. We feel that her attending dance now, will greatly reduce the cost of therapy in later years therefore reducing the cost long term for the NDIS.
Finally, evidence was given that the dance lessons may be able to be provided through the NSW Active Kids program. If that is so, the requirements of section 31(1)(f) is not satisified. Although dance lessons may possibly be provided through the ‘Active Kids’ program, the amount of support is limited to two grants of $100.00 for the year which is not sufficient for the applicant’s dance funding on the evidence before the Tribunal. Moreover, the dance studio that the applicant attends may not be an approved provider, but this was not clear from the evidence.
Although dance lessons may form part of a child’s usual recreational activities, I accept that in the case of the applicant’s ASD the activity is in fact a therapeutic benefit to the child and will be of significant benefit to her regulation and social development. I am therefore satisified that one dance class per week is reasonable and necessary and satisfies the criteria set out in the Act.
Support worker funding
The applicant’s mother in her statement of lived experience outlines a number of reasons that she seeks funding for a support worker, including to assist with attending therapy appointments which presents a difficulty given that the applicant’s siblings also have additional needs, for assistance in the home in the mornings to assist the applicant with tasks as required, someone in the evening to assist the applicant in attending her dance classes and to assist with completing her evening tasks.
The applicant’s mother notes that the respondent has provided funded emergency support hours to assist in times of medical emergencies for the applicant and/or her siblings in their current care plan, however notes that “this won't go far and doesn’t assist in [the applicant’s day to day life, and doesn’t relieve carer from being at risk of carer-burnout]”.
Although there was statements by Ms H and the applicant’s mother as to the mother suffering from ‘carer burnout’, which could be assisted by a support worker to look after the applicant and her children, there is no evidence to support the conclusion that such burnout is related to the applicant’s condition specifically. Nor is there evidence as to how the provision of a support worker every morning and afternoon would directly assist the applicant’s development and social and economic participation (section 34(1)(b))), represent value for money relative to the benefits achieved (section 34(1)(c)) or whether it will be, or is likely to be, effective and beneficial for the participant having regard to good practice (section 34(1)(d)), even though it may assist the applicant’s mother’s wellbeing and there could be an indirect benefit to the applicant.
Whilst it would no doubt be of benefit to the mother to have further assistance given her circumstances in attempting to manage three children with additional needs, there is no objective evidence before the Tribunal which would enable the Tribunal to be satisified that the provision of a support worker funding for mornings, evenings and to take the applicant to and from dance class would satisfy all the requirements of the Act.
Domestic assistance funding
I do not dispute the difficulties the applicant’s mother faces in providing for her three children with special needs as outlined in her statements of lived experience. I also note that domestic assistance could, in part, address the NDIS goal “to be supported to have the same experiences of regular children my age by accessing the community safely and engaging safely at home.”
In her statement of lived experience, the applicant’s mother said as follows:
I am at significant risk of carer burnout. I know its expected for families to ensure a house is clean, but it is not usual that a parent still be trying to get three children with sleep difficulties to sleep at 11pm at night. When i get the children to sleep, i am of course then doing the washing up, washing etc. The basics. We are in a rental so I am expected to ensure the house is maintained at all times. “Regular” families, also wouldn’t be out all day back and forth attending appointments etc allowing more time to clean at home. [The applicant] can not maintain her room, despite all of our attempts to help her place things where they belong, so everyday her room is absolutely trashed. I am constantly refolding her clothes and trying to put everything where it belongs.
However, there is not clear evidence before the Tribunal to determine what this domestic assistance would entail in full, or why it is reasonable and necessary with specific reference to the applicant’s diagnosed condition. On the evidence before the Tribunal, I cannot be satisfied that domestic assistance is linked to the applicant’s conditions, or how it would provide the necessary benefits to the applicant (section 34(1)(b)), represents value for money (section 34(1)(c)) or is likely to be, effective and beneficial for the applicant having regard to good practice (section 34(1)(d)). I also note that the support appears to relate day-to-day living costs (for example funding for a cleaner) that are not attributable to a participant’s disability support needs (rule 5.1(d)).
Accordingly, whilst I do not diminish that domestic assistance would likely be of benefit to the mother in the circumstances, I cannot be satisfied on the evidence that such assistance meets all the requirements of the Act.
Transport funding
There was very little direct evidence provided to the Tribunal in relation to transport funding. At the hearing, there was discussion as to whether the transport cost was intended to be used to pay for fuel, in which case it would, in my opinion, be excluded by rule 5.1(d). Further, there is no clear connection between the request for transport costs to be covered in the plan and the child’s condition (rule 5.1(b)).
I am not satisified on the limited evidence before the Tribunal that the request for ‘transport’ is sustained by the evidence so as to satisfy all of the criteria under section 34(1) of the Act, particularly whether it would directly assist the applicant’s development and social and economic participation (section 34(1)(b))), represent value for money relative to the benefits achieved (section 34(1)(c)) or whether it will be, or is likely to be, effective and beneficial for the participant having regard to good practice (section 34(1)(d)).
DECISION
Based on the evidence above, I find that one dance class per week is reasonable and necessary support for the applicant, given her diagnosis of ASD and accordingly the reviewable decision dated 25 July 2019 is varied so that one dance class per week is included.
Although it is not within my remit to make any orders in relation to the matter, I am strongly of the opinion that the best interests of the child are properly served by the applicant’s mother and the respondent working together to identify a suitably qualified dermatologist acceptable to both parties to make a complete diagnosis as to the applicant’s skin condition at the earliest practicable time so that all parties can be confident that a conclusive diagnosis has been made and that the child is being treated accordingly. The agency and the applicant’s mother are then in a position to work together to ensure that appropriate supports are provided for the applicant in the future.

I certify that the preceding 131 (one hundred and thirty-one) paragraphs are a true copy of the reasons for the decision herein of The Hon. John Pascoe AC CVO, Deputy President.

..................................[SGD]......................................
Associate
Dated: 19 October 2020

Date of hearing: 16 September 2020

Applicant’s mother:
In person (by video conference)

Applicant’s advocate:

Counsel for the Respondent:

Respondent’s representative:

Mr R Manwaring

Mr B Kremer

Ms L Beale

[2020] AATA 4180

19 October 2020

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