VPYC and The CEO, National Disability Insurance Agency (NDIS)
[2025] ARTA 3
•8 January 2025
VPYC and The CEO, National Disability Insurance Agency (NDIS) [2025] ARTA 3 (8 January 2025)
Applicant/s: VPYC
Respondent: The CEO, National Disability Insurance Agency
Tribunal Number: 2022/6324 and 2023/6806
Tribunal:General Member N Purcell
Place:Sydney
Date:8 January 2025
Decision:The Tribunal sets aside the decision under review and in substitution decides that the following reasonable and necessary supports will be funded in the Applicant’s statement of participant supports:
23 hours of dietician supports related to nutrition planning involving face-to-face sessions with the Applicant; 1.
18 hours of food exposure therapy by a suitability qualified therapist who has post-graduate qualifications in disability and Responsive Feeding therapy, such as a speech therapist, occupational therapist, dietician or psychologist comprising:2.
12 hours of face-to-face food therapy with the Applicant;a.
3 hours of report writing; andb.
3 hours of multidisciplinary liaison with the applicant’s dietician. c.
All other reasonable and necessary supports in the existing statement of participant supports, excluding any one-off assistive technology already funded, shall be replicated for a period of 12 months until the reassessment date.3.
The management of funding for reasonable and necessary supports under the Applicant’s plan is to remain the same.4.
The date by which the Respondent will review the Applicant’s plan is 12 months after the day on which the reasonable and necessary supports are included in the Applicant’s statement of participant supports.5.
....................[SGD]....................................................
General Member N Purcell
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – participant supports – reasonable and necessary supports – transitional supports rules – Rules 5.1 and 5.2 – weighted blanket – non-NDIS support – effective and beneficial – adolescent boy – involvement in Tribunal proceedings – participation in treatment – NDIS support for participant.
LEGISLATION
Administrative Appeals Tribunal Act 1975 (Cth)
Administrative Review Tribunal Act 2024 (Cth)
Administrative Review Tribunal (Consequential and Transitional Provisions No.1) Act 2024 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme Amendment (Getting the NDIS back on Track No. 1) Act 2024 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
National Disability Insurance Scheme (Getting the NDIS Back on Track No.1) (NDIS Supports) Transitional Rules 2024 (Cth)
Therapeutic Goods Administration Act 1989 (Cth)
CASES
Beezley v Repatriation Commission [2015] FCAFC 165
Esber v The Commonwealth (1992) 174 CLR 430
Frugtniet v Australian Securities and Investment Commission (2019) 266 CLR 250
McGarrigle and National Disability Insurance Agency [2017] FCA 308
National Disability Insurance Agency v WRMF [2020] FCAFC 79
QDKH, by his litigation representative BGJF v National Disability Insurance Agency [2021] FCAFC 189
Re Drake and Minister for Immigration and Ethnic Affairs (No 2) [1979] AATA 179; (1979) 2 ALD 634
Shi v Migration Agents Registration Authority (2008) 235 CLR 286Warwick v National Disability Insurance Agency [2024] FCA 616
SECONDARY MATERIALS
Operational Guidelines – Reasonable and Necessary supports, 22 September 2024.
Operational Guidelines – Child Representatives, 28 October 2024.
Statement of Reasons
INTRODUCTION
The Applicant is currently 15 and a half years old and lives with Autism Spectrum Disorder (ASD) (Level 3). He is large for his age, standing at 195 cm tall and weighing about 100 kg. He lives with his parents and two younger siblings in a regional town in NSW and attends a public high school which has a support unit for students living with ASD.
As a result of impairments caused by his ASD, the Applicant has difficulty with emotional regulation, behaviour and independently undertaking some activities of daily living. Central to this review is the Applicant’s emotional regulation and his highly restrictive eating which is limited to a small number of foods.
The Applicant’s goals in his current plan are as follows:
Short-term goal
I would like to develop my skills to be able to regulate my emotions and manage emotional stress independently and become more resilient, both at home and community; and
I would like to improve my sleep hygiene so that I can support my cognitive and emotional capacity to achieve my goal through the day.
Medium or long-term goal
I would like to improve my social skills to increase my social and community participation and reduce my social isolation and vulnerability;
I would like to improve my fine and gross motor skills so that I can become more independent in my daily activities and self-care needs.
I would like to increase my food and water consumption to ensure I have adequate nutritional intake that meets my physical needs;
I would like to challenge myself with new activities and develop positive self confidence in my strengths and acceptance of my difficulties to enable me to be more independent and transition between activities, reduce my social isolation and vulnerability; and
I would like to access supports to ensure my nutritional intake is supplemented while I am developing my ability to gain adequate nutrients from food based sources.[1]
[1] A3 of JHB, p475-476.
DECISIONS UNDER REVIEW
The Applicant seeks external review of two internal review decisions made by the National Disability Insurance Agency (the Respondent) pursuant to section 100(6) of the National Disability Insurance Act 2013 (Cth) (‘the NDIS Act’ or ‘the Act’). Two separate Tribunal files have been formally joined and will be determined together. The first internal review decision (file number 2022/6324) dated 12 July 2022 affirmed an earlier decision made on 28 May 2022 pursuant to section 48 of the NDIS Act not to conduct a reassessment of the Applicant’s plan. The second internal review decision (file number 2023/6806) affirmed an earlier decision made on 1 May 2022 to approve the Applicant’s statement of participant supports (SOPS) pursuant to section 33(2) of the Act.[2]
[2] Both original decisions are reviewable decisions under section 99 of the Act.
VPYC applied to the Administrative Appeals Tribunal (AAT) under section 103 of the NDIS Act on 5 August 2022 and 13 September 2023. The AAT was abolished on 13 October 2024 and the Administrative Review Tribunal (ART) began on the 14 October 2024. By virtue of the transitional arrangements, VPYC’s applications were automatically transferred to the ART.[3]
[3] See Administrative Review Tribunal (Consequential and Transitional Provisions No.1) Act 2024 (Cth).
The issue before the Tribunal is whether the Applicant satisfies the criteria of the National Disability Insurance Scheme (‘the NDIS’ or ‘the scheme’) in accordance with sections 33 and 34 of the NDIS Act in relation to the following requested supports:
(a)Funding of $1,120 for a Grande KloudSac (foam filled bean bag)
(b)Funding of $340 for a Queen size 10kg weighted blanket
(c)Funding for vitamins and dietary supplements including:
(i)Orthoplex Green Iron supplements
(ii)BioCeuticals Ubiquinol (fruit and vegetable supplement)
(iii)Activated Biome Daily Probiotics
(iv)Inulin Plus fibre supplement
(d)Funding of $8,305 for nutrition and feeding therapy, comprising:
(i)$2,360 for 8 hours per year (2 hours per quarter of 1:1 parent consultation)
(ii)$2,360 for 8 hours per year (2 hours per quarter of nutrition assessment and planning)
(iii)$1,500 annual access to Kids Feeding Clinic Online Support
(iv)$885 for 3 hours report writing.
The Respondent contends the evidence does not support a finding that the abovementioned requested supports are reasonable and necessary pursuant to the legislative framework. In the Respondent submission, the following supports are reasonable and necessary:
Current supports in Applicant’s plan
(a)26 hours for OT ($5,043.75 – Capacity Building (CB) – Improved Daily Living)
(b)12 hours for psychologist ($2,572.92 – CB – Emotional Regulation and Behaviour)
(c)12 hours for speech pathologist ($2,327.88 – CB – Improve Communication)
(d)10 hours per week for community access (2 hours per weekday) (Capacity Building - Increased Social and Community Participation)
(e)A total consumables budget of $500 to purchase low-cost assistive technology which is a NDIS support.
Additional proposed supports
(f)23 hours of dietician supports related to nutrition planning;
(g)18 hours of food exposure therapy comprising:
(i)12 hours of food therapy to increase the Applicant’s exposure to a variety of foods;
(ii)3 hours of report writing; and
(iii)3 hours of multidisciplinary liaison with the applicant’s dietician.
THE HEARING
The Applicant was represented by his Mother who is also his child representative pursuant to sections 74 and 75 of the NDIS Act. The Respondent was represented by Ms Josie Dempster of counsel.
The hearing was conducted via video over 2 days. The hearing resumed on a third day so the Tribunal could have an informal conversation directly with the Applicant prior to the parties making closing submissions. This issue will be discussed further below.
In arriving at its decision, the Tribunal has considered the various documents contained in the joint hearing bundle (JHB) which was accepted into evidence. This included 2 sets of documents filed by the Respondent pursuant to section 37 of the now repealed Administrative Appeals Tribunal Act 1975 (Cth) (‘the AAT Act’) (‘T-Documents’), the Respondent’s Statement of Facts, Issues and Contentions (SOFIC) dated 23 July 2024 and an independent report of Dr Brooke Harcourt, paediatric and disability dietician, dated 9 July 2024. The Respondent also filed submissions regarding the effects of recent amendments to the NDIS Act, dated 12 November 2024 to which the Tribunal has had regard.
The Applicant filed a range of documents over the course of the proceedings, also contained in the JHB, including reports from two occupational therapists (OT) Ms AC and Ms MJC and several reports from consultant paediatrician Mr Michael Hann. The Tribunal also admitted into evidence an October 2024 Food diary,[4] October 2024 blood test results,[5] an email from the Applicant’s mother to the Respondent dated 31 October 2024 (time stamped 4:37pm)[6] and a second email dated 31 October 2024 (time stamped 4:40pm).[7]
[4] Marked E1.
[5] Marked E2.
[6] Marked E3.
[7] Marked E4.
The Applicant’s mother, Mr Hann and Dr Harcourt also gave oral evidence at the hearing.
ROLE OF THE TRIBUNAL
The Tribunal’s role is to make the correct or preferable decision based on the material before it.[8] In reviewing the decision:
[8] Shi v Migration Agents Registration Authority (2008) 235 CLR 286 at [37]-[38], [45]-[46] (Kirby J), [99] (Hayne and Heydon JJ), [143] (Kiefel J).
(i)the Tribunal stands in the shoes of the delegate/internal reviewer and must make the correct or preferable decision based upon the evidence and other material before it;[9] and
[9] See Esber v The Commonwealth (1992) 174 CLR 430 at 440; Frugtniet v Australian Securities and Investment Commission (2019) 266 CLR 250 at [51]; QDKH, by his litigation representative BGJF v National Disability Insurance Agency [2021] FCAFC 189.
(ii)the scope of the Tribunal’s jurisdiction is determined by reference to the scope of the internal reviewer’s powers under section 100 of the NDIS Act, which is in turn informed by the scope of power under section 33(2) of the NDIS Act.[10]
[10] QDKH, by his litigation representative BGJF v National Disability Insurance Agency [2021] FCAFC 189 at [7].
The relevant provisions under the new Administrative Review Tribunal Act 2024 (Cth) (ART Act) are sections 54 and 105.
LEGISLATIVE FRAMEWORK
The NDIS was established under the NDIS Act. Its objectives are set out in section 3 and its general principles guiding actions taken under the NDIS Act are set out in section 4. Section 3(1)(c) and (g) relevantly states the objectives of the Act are to support the independence and social and economic participation of people with disability and to promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community.
A participant’s plan must include a statement of participant supports, approved in accordance with section 33 of the NDIS Act, and any rules made under the NDIS Act.
The National Disability Insurance Scheme Amendment (Getting the NDIS back on Track No. 1) Act 2024 (Cth) came into force on 3 October 2024, changing a number of provisions including section 34 regarding reasonable and necessary supports. The Act also introduced a new section 10 regarding a definition of NDIS support (discussed further below in relation to the NDIS Transitional Supports Rules) and amended section 34(1)(f) which now requires the decision maker to be satisfied that “the support is a NDIS support for the participant”. These changes apply to the Applicant’s SOPS and must be considered by the Tribunal.[11]
[11] Subitem 129(2) of Schedule 1 of the Amending Act provides that if a statement of participant supports is approved or varied on or after 3 October 2024, the amendments apply irrespective of whether the Applicant’s plan came into effect before, or on or after commencement.
Subsection 34(1) of the NDIS Act now relevantly states:
(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:
(aa)the support is necessary to address needs of the participant arising from an impairment in relation to which the participant meets the disability requirements (see section 24) or the early intervention requirements (see section 25);
(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 an NDIS support for the participant.
Note: For the purposes of paragraph (aa):
(a) the time at which the disability requirements or the early intervention requirements need to be met is the time the CEO decides to approve the statement of participant supports; and
(b) a participant’s disability support needs arising from an impairment in relation to which the participant meets the disability requirements or the early intervention requirements may be affected by a variety of factors, including environmental factors or the impact of another impairment in relation to which the participant does not meet either of those requirements.
(2) The National Disability Insurance Scheme rules may 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)(aa) to (f).
The Tribunal must be positively satisfied about each of the matters set out in section 34(1) of the Act.[12] The Applicant carries what has been described as a common sense or practical onus to adduce sufficient evidence to satisfy the Tribunal the criteria are met.[13]
[12] National Disability Insurance Agency v WRMF [2020] FCAFC 79 at [202].
[13] For example, Beezley v Repatriation Commission (2015) FCAFC 165 at [68] (North, Tracey and Mortimer JJ).
The term “reasonable and necessary support” is not defined in the NDIS Act. In McGarrigle v National Disability Insurance Agency [2017] FCA 308 (‘McGarrigle’) Mortimer J observed, at [91], with respect to the terms:
Whether a support is “reasonable” requires a different assessment to whether a support is “necessary”. Again, it is not necessary in the context of this proceeding to be definitive about the nature and extent of the meaning of the phrase, or its components. It is enough to observe that using the concept of necessity would appear to tie one aspect of the CEO’s assessment to an evaluation of the kinds of factors set out in s 34(1)(a) and (b) and (d). The word “reasonable” would appear to be directed at factors such as those set out in s 34(1)(c) and (f). That is not to say the meaning of each word is exhausted by the factors set out in s 34(1): rather, it is to illustrate the different work that each concept does as an adjective in the phrase “reasonable and necessary supports”.
The Full Court in WRMF considered the meaning of reasonable and necessary supports:
[T]here is no doubt that the contextual use of the phrase in this Act links it to public funding to be provided to a participant. In that context, the phrase connotes supports which meet a threshold which justifies - by reference to the context, objects and guiding principles of the Act and the facts of the case - the expenditure of public funds for that support, for a particular participant. As we have already explained, the phrase also needs to be understood taking into account what has qualified a person as a participant, and the links between a person's impairment and their full participation in the community, in the same variety of ways as persons without a disability might choose to participate.[14]
[14] WRMF at [149]-[151].
Under subsection 209(1) of the Act, the Minister may make rules prescribing certain matters. Relevant rules in the Applicant’s case include the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (‘the Supports Rules’).
Part 3 of the Supports Rules set out criteria the Tribunal must consider when determining whether the supports requested are reasonable and necessary.
Relevantly in this case, Rule 3.1 regarding value for money (section 34(1)(c)) states:
3.1 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);
…
(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).[15]
[15] National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth).
Rules 3.2 and 3.3 regarding effective and beneficial and current good practice (section 34(1)(d)) 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 outlines the matters to be considered when assessing what is reasonable to expect families, carers, informal networks and the community to provide under section 34(1)(e).
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:
…
(b) for other participants:
(i) the extent of any risks to the wellbeing of the participant arising from the participant’s reliance on the support of family members, carers, informal networks and the community; and
(ii) the suitability of family members, carers, informal networks and the community to provide the supports that the participant requires, including such factors as:
(A) the age and capacity of the participant’s family members and carers, including the extent to which family and community supports are available to sustain them in their caring role; and
(B) the intensity and type of support that is required and whether it is age and gender appropriate for a particular family member or carer to be providing that care; and
(C) the extent of any risks to the long term wellbeing of any of the family members or carers (for example, a child should not be expected to provide care for their parents, siblings or other relatives or be required to limit their educational opportunities); and
(iii) the extent to which informal supports contribute to or reduce a participant’s level of independence and other outcomes;
(c) for all participants—the desirability of supporting and developing the potential contributions of informal supports and networks within their communities.
Part 5 contains general criteria regarding supports and supports that will not be funded. Rules 5.1 and 5.2 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.
The National Disability Insurance Scheme (Getting the NDIS Back on Track No.1) (NDIS Supports) Transitional Rules 2024 (Cth) (‘the Transitional Supports Rules’) introduce several key changes. Schedule 2 of the Transitional Supports Rules outlines supports that are generally not considered NDIS supports and are discussed further below.
The NDIS Operational Guidelines are also relevant to making decisions in accordance with the Act. Operational Guidelines represent government policy and should be applied by the Tribunal unless there is good reason not to do so.[16] The Operational Guideline - Reasonable and Necessary Supports (22 September 2024) states that the NDIS principles set out in law indicate that reasonable and necessary supports should:
- support you to pursue your goals and maximise your independence
- support you to live independently and to be included in the community as a fully participating citizen
- develop and support your capacity to do things that help you participate in the community and in employment.[17]
[16] Re Drake and Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 634 at [635].
[17] Operational Guideline - Reasonable and Necessary Supports (22 September 2024), p17.
The Operational Guideline – Child Representatives (28 October 2024) will also be considered below regarding discussion of the Applicant’s involvement in the Tribunal proceedings.
EVIDENCE
Applicant’s Mother
The Applicant’s mother explained that the Applicant started rejecting food at around 16 months of age, around the same time he stopped achieving his developmental milestones. She described the Applicant having massive meltdowns from the age of 3 when the family sat down to eat dinner and said he has no memory of social eating because he stopped so young. Occasionally, he might have one or two hot chips at the local pub but after about 5 minutes he wants to go home due to the environment being noisy, crowded and busy. He is currently 195cm tall and weighs about 100kg. Regularly he swims in the backyard pool and once per week he goes with a support worker for a long walk or to swim/body board at the beach.
The Applicant’s mother assisted the Applicant to get dressed for school until the end of year 8 (approximately 12 months ago). She still ties his shoelaces, but noted he has showered himself for years. “So over time, I have gradually stepped back to the point where now at the beginning of this year, he just does it all by himself”. She explained this is also the first year that he is happy enough to go to school – previously there was a lot of resistance. He recently completed his White Card, plans to get a part-time job at Woolworths supermarket and wants to eventually study science technology at TAFE.
She told the Tribunal the Applicant participated in feeding therapy with a speech pathologist for about 6 months when he was 8 or 9 years old, which was unsuccessful. Since the age of 6, he has participated in sensory integration activities with food at school – “cooking, cutting, slicing, dicing, smelling and nothing has changed from that exposure”.
The Applicant has not received regular OT, psychological or speech therapy in recent years. The Applicant worked with a psychologist during his transition from primary school to high school about 3 years ago. His mother said the Applicant now refuses to see the psychologist.
The Applicant has a very restricted diet, as outlined in a food diary from October 2024 which shows that he consumes the following on an average day:
Breakfast: 100ml of Diet Rite Green Cordial mixed with 1 scoop of Paediatric Seravit and 1 tsp Organic Sunfibre and 2 x 250mls Strawberry Up and Go.
Lunch: 1 x 250ml Strawberry Up and Go
1.3lt of water.
Afternoon snack: 170g Smith plain chips
Dinner: 100 ml of Diet Rite Green Cordial mixed with 1 scoop of Paediatric Seravit and 1 tsp of Inulin Plus. 1 lt of water.
6 oreos OR 1 box of Arnott’s BBQ Shapes OR 170g of Smiths Plain Chips and approximately 300ml of water.[18]
[18] E1.
At the hearing, the Applicant’s mother explained that due to his age and size the Applicant is meant to have the supplement Phlexi-Vits but he won’t drink it because it’s cloudy. Instead, he takes Seravit which is a paediatric formula. His fibre supplements were originally mixed with apple juice, but she cut the juice out because of concerns about the sugar content.
In addition to Paediatric Seravit, which is prescribed by the Applicant’s GP under the pharmaceutical benefits scheme (PBS), the Applicant takes the following tablets / supplements:
(a)Ubiquinol (to replace fruits and vegetables)
(b)Orthoplex Iron supplement
(c)Bio-immune probiotic
(d)Organic Sun Fibre in the mornings (with Seravit)
(e)Inulin Plus Fibre supplement in the evenings (with Seravit)
This routine has been in place for about 18 to 24 months, with the iron tablet added in the past 12 months or so. Since the age of 11, the Applicant has been prescribed Zoloft for “severe anxiety”. He currently takes 100mg daily. He also takes Metformin for metabolic syndrome and high-cholesterol, and melatonin gummies to assist with sleep.
Approximately two years ago, the Applicant was drinking Sustagen and egg milkshakes each day. However, under the guidance of Mr Hann, this was cut out because “he was having too much protein in his diet with the eggs” and was gaining weight. “[Mr Hann] was very concerned about this weight gain”. The milkshakes consisted of a maximum of 2 eggs per day (about 15 grams of protein) and up to 750ml of milk. The Applicant’s mother told the Tribunal that Mr Hann then prescribed GrowKids Neuro, a micronutrient product with “a very intense taste and smell” available through an online pharmacy, the Natural Chemist. Mr Hann described the Natural Chemist as an “online prescription and retail service to families nationwide” and explained many of these products are by nutrition script only via an Accredited Practicing Dietician (APD) or other registered healthcare practitioner.[19] The Applicant’s mother said they “tried and tried” but the Applicant wouldn’t take GrowKids. She then tried Phlexy-Vits for 3 or 4 months but he wasn’t drinking that either, so they changed to paediatric Seravit in January 2023.[20] She said the Applicant “overdosed” on milk and Sustagen and now won’t drink either.
[19] T6 of JHB, p77.
[20] A2T2 of JHB, p220.
The Applicant now routinely drinks 2 or 3 Up&Go each day. Each 250ml packs of Up&Go has 8.4g of protein and 198 calories. The Applicant’s mother explained that she hides food because otherwise the Applicant might eat 5 packets of chips per day or 10 Up&Go. He drinks about 3 litres of water per day. He is very rigid about the brand and appearance of food and drink. For example, he will only eat Smiths plain chips, not similar ones from ALDI. “He independently feeds himself, but he’ll only eat what he wants to eat”. The Applicant reportedly likes the “odd sweet thing” including Cadbury chocolate however the Applicant’s mother said, “I’m weight conscious on treats and things like that. So that’s only every now and then”.
The Tribunal understands the Applicant’s restricted eating impacts social aspects of his life. He ate a bag of chips at his grade 6 dinner and won’t go out to family dinners. His mother is worried about the effect on his social life when he is older particularly if he wants to have a romantic relationship.
The Applicant’s restrictive eating has also impacted his health. In her second application to the Tribunal in September 2023, the Applicant’s mother indicated that the Applicant had been diagnosed by his GP with malnutrition and was anaemic and regularly experiencing severe fatigue.[21]
[21] A2T2 of JHB, p220.
The Tribunal inquired whether the Applicant understands that his restrictive eating is having an impact on his health. The Applicant’s mother explained he had an iron infusion in 2023 which he found distressing and so Mr Hann prescribed a new iron supplement. She told the Tribunal that the Applicant now takes the iron supplement every day and understands that the tablet is instead of having a needle in his arm. She disagreed with the proposition that this example suggests the Applicant does have the capacity to weigh up some options in relation to his health and nutrition. In her view, “it’s the chemical imbalance in his brain that is preventing him to eat… There is no amount of intervention specialists whatever to make him start eating”.
The Applicant’s mother said:
There is no way in the world [the Applicant] will eat anything he doesn’t want to eat… He cooks at school. He’s involved in food preparation at school, but he will not eat it. And I will tell you now, there is no speech therapist that can work with [the Applicant], that will make him experiment with food”.
In her view, the Applicant engaging with clinicians who are specialised in assisting people with disordered eating and disabilities such as autism would “be an absolute waste of time”.
I’m his parent, I’m his advocate, I know him the best and he will not participate face to face. Yeah, I can get him to the GP, but I’ve got to work on him for a week to do it. It took 3 months of blowing bubbles at the front door of early intervention at the age of three to get him through the door.
The Applicant’s mother also seemed to suggest she was unable to access the current supplements without Mr Hann’s assistance, relying on his prescription to access the supplements through the Natural Chemist. In her view, the recent blood test results demonstrate that Mr Hann’s interventions are working.
The Applicant’s mother confirmed that Mr Hann has not directly engaged with the Applicant despite working with her for almost 3 years. Later, she was critical of Dr Harcourt’s report on the basis that she had not worked with the Applicant. “I just don’t comprehend how you can assess someone without actually meeting them and working with them”. Dr Harcourt acknowledged the limitations in her report, noting that it was based on reports from the Applicant’s treating clinicians.
Notwithstanding the clear difficulties associated with the Applicant’s eating, the Tribunal observed a concerning level of pessimism from the Applicant’s mother that was, at times, difficult to understand given the relatively limited involvement of specialists in her son’s life. This did not appear to be a case where a parent had tried everything – rather there appeared to be a tendency towards resignation following unsuccessful feeding therapy when the Applicant was 8 or 9 years old. There was also an apparent inconsistency in some of the positions the Applicant’s mother adopted during the course of the hearing. For example, she suggested the Applicant was at high risk of depression and suicide because of his eating disorder but seemed unsupportive of him engaging with psychological therapy despite a clear recommendation from the OT who most recently assessed the Applicant[22] and his longstanding prescription of Zoloft. She also suggested the Applicant might die from cancer at 40 due to his restrictive eating but was unsupportive of trialling additional face-to-face therapies. The Applicant reportedly shares a similarly dim view of his future, telling his mother: “I’m going to die young, Mum, because I don’t eat”. On two separate occasions during the hearing, the Applicant’s mother referred to an examination of her son’s brain following death:
My idea would be to have a look at his brain when he does eventually die to figure out what is the imbalance in the chemicals in his brain that is dysfunctionally stopping him from eating and only choosing a very few select foods that are crunchy or salty.
[22] A2T8 of JHB, p323.
Pleasingly, the Applicant’s most recent blood tests and growth (discussed further below) reveal that he is achieving adequate nutrition and has reasonable health despite the extreme difficulties associated with his eating. The Tribunal is optimistic about the Applicant’s future and his current relative good health provides a solid foundation upon which he can build going forward.
The Applicant’s mother provided the following evidence in support of the requested supports.
Weighted blanket
In her second application to the Tribunal, the Applicant’s mother explained that the Applicant has sleep issues and deep pressure from an appropriate weighted blanket would enable him to have a better quality of sleep.[23]
[23] A2T8 of JHB, p220.
At the hearing, the Applicant’s mother described needing to squash the Applicant with weight when he was young to help calm him when he was dysregulated. Due to his current size, she can no longer do that. He still uses his 3kg spider man weighted blanket which is no longer sufficient because of his size and weight. The Applicant reportedly hides under the quilt on his bed when he has meltdowns. However, the Applicant’s mother said he needs weight on him. She is of the view that a 10kg weighted blanket would be very soothing and calming and support his emotional regulation. She knows where she can purchase a 10kg weighted blanket for $360.
In her letter dated 22 October 2021, OT Ms AC recommended a weighted blanket “for sleep regulation, self soothing and enabling independent sleep routines”. She noted the Applicant has used one before and it was “very successful in sensory and emotional regulation”.[24]
[24] A2T3 of JHB, p246.
In a report dated 26 March 2023, OT Ms MJC supported the use of a 10kg Neptune blanket which is a portable option to assist the Applicant with emotional regulation. The blanket has even weight distributed and “applies Deep Touch Pressure simulations and provides a calming effect in stressful situations”.[25]
[25] A2T8 of JHB, p338.
Noting that the Applicant’s matter had been before the Tribunal for approximately 2.5 years, the item is relatively inexpensive and was said to have a significant impact on the Applicant’s capacity for emotional regulation, the Tribunal was curious why the Applicant’s mother had not bought the blanket and then had the discussion with the Respondent whether the NDIS would cover the cost of it. She replied – “it’s the principal, NDIS need to cover it” and “I refuse to use my own money for a sensory device that NDIS should provide”.
KloudSac
In her letter dated 22 October 2021, Ms AC recommends a KloudSac “for deep pressure/comfort/ relaxation and regulation”.[26] A KloudSac is a foam filled bean bag alternative.
[26] A2T3 of JHB, p246.
In her further letter dated 18 November 2021, Ms AC notes that:
Over time he has used a KloudSac at school and reports that it makes him feel comfortable, relaxed, calm and is a safe place which assists to de-stresses [sic] him.
As he is transitioning from Primary School toHigh [sic] school, it seems an appropriate time to provide sensory and emotionally regulating equipment so that he can manage his responses to the difficulties that these new situations will present.[27]
[27] A2T4 of JHB, p250.
OT Ms MJC noted in her report dated 26 March 2023 that the KloudSac has been trialled successfully with the Applicant at school and “found to have therapeutic benefit”. She suggested that he could use a KloudSac at home prior to meals and to aid focus during schoolwork at home. In her view, a KloudSac would aid the Applicant’s emotional regulation and engagement with routines.[28]
[28] A2T8, p337.
At hearing, the Applicant’s mother explained that the Applicant often used a KloudSac at primary school, especially for meltdowns. She described how the Applicant will get under it, using the weight of the KloudSac to self-settle - he doesn’t use it as a bean bag or bed. She told the Tribunal that she was anticipating another difficult Christmas and thought a KloudSac would support him through the changes in routine on the day.
Nutritional supplements
The Applicant’s mother indicated the Applicant’s eating dysfunction has caused malnourishment because he doesn’t receive adequate nutrition through food and relies on supplements. In her view, the Applicant’s supplements (except the Seravit, which is on the PBS) should be funded by the NDIS because his eating dysfunction is caused by his Autism.
With respect to the outcomes from Mr Hann’s interventions, the Applicant’s mother said:
There's been no improvement with his eating restrictions but there's been improvement in the quality of his health and his ability to function and have endurance, to learn, to go to school, to get up out of bed, to have physical energy where at the moment he is wanting to get a job at Woolworths. We don't know whether he will have complete energy levels to have full time work.
Mr Hann explained in his report dated 25 February 2023 that it would be unrealistic to expect the Applicant to expand the variety of foods in his diet over the course of a year and would likely take many years. He said, “oral nutrition support products are often easier to consume than whole foods for individuals living with Autism (highly disordered sensory systems)” and the Applicant “will require feeding therapy support to build his capacity to tolerate/manage these nutrition products and expand his whole food intake”.[29]
[29] A2T7 of JHB, p282.
As mentioned above, the current regime of supplements has been steady for at least a year. The Applicant commenced the micro-nutrient supplement Seravit in January 2023 and has accepted an iron supplement following an iron infusion in 2023. In her email dated 31 October 2024, the Applicant’s mother said, “[The Applicant] is meant to be on Phlexy-Vits but his eating restriction is so severe he will not consume this at all due to its visual presence of being cloudy even thought it is taste less (sic)”. She further noted that Paediatric Seravit is for 3 – 9 year olds and therefore he could not maintain adequate micro nutrients in his diet.[30]
[30] E4.
Nutrition and Feeding therapy with Mr Hann
In her report dated 22 October 2021, Ms Crane indicates that due to the Applicant’s anxieties around food she would “predict he needs the guidance of a skilled dietician” with “significant experiencing in managing ASD, Food Anxiety Avoidance Phenomena”.[31]
[31] A1T3 of JHB, p54.
Mr Hann observed in his report dated 13 January 2022 that the Applicant’s diet excluded all fruits, vegetables, legumes, nuts, seeds, meats and dairy. His diet consisted of Sustagen, Up&Go, Shapes, Smiths crisps, Delta cream biscuits, icy poles, country cheese biscuits, Sao biscuits and Cadbury chocolate. The Applicant “avoids all chewy foods. Tolerates small selection of easy to crunch foods. Eats with mouth open. Query orometer skill concerns for chewing. Appetite/satiety approx. normal”.[32]
[32] A1T1C of JHB, p28.
In a further letter dated 28 February 2022, Mr Hann was of the view that the Applicant’s feeding impairment was causing “malnutrition (obesity) and nutrition deficiencies” with a concern that the then 12-year-old was 20kg overweight and obese according to his BMI of 31.[33] He noted that child malnutrition has significant impacts on child development including on the brain and the gastrointestinal system and can increase the risk of mental health problems and auto-immune disease. He suggested the Applicant requires “more intensive feeding focussed therapies to support small improvements in his very rigid eating behaviours”. Further,
[The Applicant] has a very high need for a multi-disciplinary feeding therapy team with proficiency in the presentation of Avoidant Restrictive Food Intake Disorder (DSM-V) caused by Autism; sensory processing difficulties, repetitive and restrictive interests, possible oro-motor skill delays and anxiety.[34]
[33] A1T7 of JHB, p82.
[34] A1T7 of JHB, p83.
Mr Hann concluded it was vital the Applicant receive oral nutrition support products and would require ongoing feeding therapy strategies to increase his acceptance of micronutrient support products every day. He added:
However, prescribing nutrition supplements is only one step; developing the sensory tolerance and practical strategies to take these each day is often a much longer journey that requires regular therapy sessions.[35]
[35] A1T7 of JHB, p87.
He opined that it could take many years for the Applicant to expand the variety of food in his diet. In his view, it is crucial to build the capacity of parents to facilitate the Applicant’s exposure to food at home.[36] However, he also acknowledged, “[the Applicant’s] very restrictive diet has not changed despite ongoing attempts with food exposure strategies at home”.[37]
[36] A2T7 of JHB, p282.
[37] A2T7 of JHB, p284.
Mr Hann painted a relatively bleak picture with respect to the Applicant’s future in his February 2023 NDIS Plan review:
Without nutrient support, [the Applicant] is at very high risk of developing higher levels of morbid obesity and immobility, alongside micronutrient deficiency disorders, essential fatty acid deficiencies and prebiotic fibre deficiencies, with detrimental impacts on his learning and development outcomes, the onset of additional psychiatric morbidities in his teenage years and significantly increased risk of chronic illness/disease (affecting brain, gut, metabolic, renal and cardiovascular systems) and early mortality.[38]
[38] A2T7 of JHB, p282.
Mr Hann recommended nutrition and feeding therapy costing approximately $8,305 per year and nutritional supplements costing about $2,940 per year, explaining that his service has developed an evidenced-based blended therapy model that reduces the total number of ‘fee hours’ per child.[39] As the Tribunal later heard, Mr Hann’s model relies on telehealth consults with parents and does not directly involve the child or young person.
[39] A2T7 of JHB, p291.
Other Experts
Following her assessment of the Applicant in February 2023, OT Ms MJC concluded that the Applicant “presents with some elevated risk for externalising behaviours including hyperactivity, aggression and conduct problems”.[40]
[The Applicant’s] results also indicated elevated risk of internalising behaviours this can include behaviours such as anxiety, depression and somatisation. Children with internalising problems tend to monitor their own actions and their problems can at times go unnoticed.
I would recommend further behavioural and emotional assessment with a psychologist funding and support to enable access to a psychologist fortnightly based on [the Applicant’s] result of being at risk for behavioural and emotional problems”.[41]
[40] A2T8 of JHB, p323.
[41] A2T8 of JHB, p323.
She opined the Applicant would benefit from regular engagement with a psychologist, OT, speech pathologist and a therapist providing dietetic therapeutic support.[42] She also supported increased social and community participation with assistance from a support worker 2 hours per week and thought the Applicant would benefit from a personal trainer.[43]
[42] A2T8 of JHB, p332-333.
[43] A2T8 of JHB, p332.
Mr Michael Hann – Consultant paediatric dietician
Mr Hann gave oral evidence at the hearing. He has a Master’s degree in nutrition and dietetics and runs his own consulting business, Paediatric Dietician Clinic.
He told the Tribunal he has been working with the Applicant’s mother since approximately December 2021 through telehealth consultations. Mr Hann confirmed that he has not directly engaged with the Applicant beyond saying hello. “For a lot of my clients… it’s very difficult to engage with them just due to the nature of their autism, it’s extremely difficult, so almost all of it is done through parents”. His assessments are conducted through question and answer or the completion of questionnaires by a parent. He does not meet clients in person or take measurements.
It was not apparent that Mr Hann had informed himself of the Applicant’s current level of communication, noting that he attends a public school and is wanting to get a part-time job at a supermarket. As will be discussed below, the Tribunal spoke with the Applicant for over 20 minutes and observed him to engage appropriately with the Tribunal’s questions.
Mr Hann confirmed that the Applicant meets the diagnostic criteria for avoidant restrictive food intake disorder (ARFID) and a paediatric feeding disorder. In his view, a diagnosis of paediatric feeding disorder is more appropriate because it encompasses multiple disabilities and disorders, including autism, which contribute to a restrictive feeding problem. Mr Hann explained that currently ARFID is the only diagnosis with an agreed evidence-based treatment protocol, namely cognitive behaviour therapy (CBT). He explained that a CBT approach involving a psychologist helping to rationalise away one’s fear or avoidance of food will not work for individuals where autism is the key cause of the restrictive eating. When asked about the Applicant’s mother’s repeated references to a chemical imbalance in her son’s brain, Mr Hann responded:
It would be a very big oversimplification to simply call this a chemical imbalance in the brain. There are many different mechanisms affecting different part of the autistic brain that is getting in the way of someone like [the Applicant] being able to eat food.
His assessments involve obtaining an extensive timeline of the child’s life from birth to their present age to understand when feeding issues and other diagnosis have arisen. He said “severely restrictive feeding problems are often quite multi mechanistic” with many children in his clinic having between 6 to 10 different diagnosis. Mr Hann also considers paediatric, GP, OT and speech pathology reports and reviews blood, urine and stool tests to check whether gastroenterological issues may be contributing to restrictive eating. He asks parents to complete a 7-day food and fluid journal. He also considers oral/motor issues, sensory issues, anxiety, phobias, eating habits, environmental or lifestyle factors, parental patterns, and habits around work.
Mr Hann was not sure whether the Applicant had been diagnosed with metabolic syndrome but was of the view that he is at risk due to “insulin resistance and obesity”. He confirmed that he told the Applicant’s mother to stop giving the Applicant egg and Sustagen milkshakes because of concerns about weight gain and too much protein. He said it wasn’t normal for a then 12-year-old to weigh 100kg or more and “so yes, naturally I was looking for way to reduce his total energy intake and protein intake”. Mr Hann said he was concerned about the lack of fibre in the Applicant’s diet and explained the role of fibre in signalling satiety to the body. In his February 2022 report, Mr Hann discussed a potential goal weight of about 75kg for the Applicant. At hearing, he agreed with the proposition that such a goal was not realistic and said the main goal would be to maintain a stable weight of 100kg.
Counsel suggested to Mr Hann that in circumstances where a child with severe eating restrictions has demonstrated a tolerance to consume certain foods, particularly whole foods like milk and eggs, they should be kept in his diet and used to build up tolerance of other foods. Mr Hann’s response focused on Sustagen not being a whole food and did not adequately explain, in the Tribunal’s view, why eggs and milk were removed from the Applicant’s diet.
Mr Hann described a “few kids in the clinic who have attended feeding therapy, some for multiple years, and they have not included one more food in their diet”. However, he agreed with the proposition that a clinician with specialisation in disability and/or restrictive eating approaches is likely to have better prospects of encouraging the Applicant to try or be exposed to new foods compared with a parent. “If we can get a child or teen to engage in one of those responsive style feeding therapy approaches in person and get a result, then if they will engage in that, then yes, of course that can be very helpful”. He acknowledged young people with restricted food intake can experience social isolation, particularly as they reach adulthood. A key goal for young people is that they can still be social and be around other people eating even if they are not eating those foods themselves.
Mr Hann explained that he works with a cohort of children or teens with extremely restrictive feeding where they have tried multiple approaches and incremental exposure to see if they can overcome their sensory issues and rigidity and expand the foods in their diet. “For a lot of the kids in my clinic, they’re at the end of the line now. None of that has worked”. Noting the Applicant has not participated in feeding therapy since he was 8 or 9, it was unclear to the Tribunal whether Mr Hann thinks the Applicant has exhausted all other options and whether he considers it appropriate to continue providing guidance directly to the Applicant’s mother without his involvement.
Mr Hann seemed to assume the Applicant was still taking Phlexi-Vits, stating this is the “most mission critical one that he’s on”. The Applicant’s mother clarified that he’s on Seravit, a paediatric version of Phlexi-Vits, which he has been taking since January 2023.
Of the vitamins and supplements that the Applicant routinely takes, only the ubiquinol and iron supplement cannot be purchased through a regular pharmacy or supermarket due to the brand recommended. The terms ‘prescription’ and ‘prescribed’ were used by the Applicant’s mother and Mr Hann in relation to the various supplements used and purchased. Mr Hann clarified that the Orthoplex Iron is a practitioner-only product. In the Tribunal’s view, the word ‘recommend’ perhaps more accurately captures the service Mr Hann provides. The Tribunal understands that the Applicant’s GP prescribes the Seravit and could write prescriptions for a particular iron supplement.
Mr Hann is of the view that the Applicant will be reliant on nutritional supplement products for the rest of his life if he only eats Oreos, chips and Shapes biscuits.
Dr Brooke Harcourt – Independent paediatric and disability dietician.
Dr Harcourt was engaged by the Respondent to assess the Applicant and to express an opinion on a range of matters relating to his feeding difficulties. This assessment was conducted ‘on the papers’ and Dr Harcourt’s report dated 9 July 2024 was prepared in accordance with the Tribunal’s guideline on persons giving expert or opinion evidence.
Dr Harcourt holds a Bachelor of Science, a Bachelor of Nutrition and Dietetics and a PhD in Medicine from Monash University. She is the Managing Director of Family Dietetics, a large Community Paediatric and Disability Dietician service.
From her analysis of the Applicant’s food list and clinician reports, Dr Harcourt opined in her report that the Applicant was likely to be in a state of protein and micronutrient malnutrition.[44]
In line with current nutrition in disability, diabetes and weight management guidelines, meeting Protein requirements should be the first priority… The most efficient way for [the Applicant] to this this would be via an accepted oral nutrition supplement source such as Sustagen, while he increased his ability to eat from wider food groups.[45]
[44] C2 of JHB, p612.
[45] C2 of JHB, p612.
She recommended the provision of specialist disability dietetics services to the Applicant due to the unique skills required to translate information and make individualised recommendations.[46] If the Applicant was able to meet nutritional adequacy within the next 12 months, Dr Harcourt was of the view he should commence face to face fortnightly feeding therapy sessions with a clinician with postgraduate qualifications in disability and Responsive Feeding techniques, such as a psychologist, OT, dietician or speech pathologist. The clinician would work with him to increase his capacity in relation to exploring food.[47]
[46] C2 of JHB, p615.
[47] C2 of JHB, p615-616.
Like Ms MJC, Dr Harcourt was of the view that the Applicant would benefit from additional support worker assistance to increase engagement in social activities, engagement with an exercise physiologist to encourage physical activity and an occupational therapist to help set up routines.[48]
[48] C2 of JHB, p614.
At the hearing, Dr Harcourt confirmed her view that the Applicant is overweight rather than obese. Based on his current age, height and weight, Dr Harcourt calculated his current body mass index (BMI) as approximately 26.3 which indicates he is just a little overweight.
Dr Harcourt recommended funding for services that provide face to face sessions which directly involve the Applicant rather than telehealth consults with a parent. She indicated the Applicant’s age was now a key factor and that the “gold standard treatment of eating disorder or disorder eating profiles” requires the involvement of the participant. In her view, there is a qualitative difference in the relationship between a therapist and a participant compared with a therapist-parent-child dyad. She explained “there is evidence that the at home – parent-led approach which has been coached by Michael Hann to date has not been successful, and in fact has likely been of further detriment to [the Applicant’s] wellbeing”.[49] In her view, Ms MJC’s March 2023 OT report suggested the Applicant was seeking some autonomy over how he engaged or participated in therapy-based tasks. Dr Harcourt explained that irrespective of whether the young person has a learning disability or learning impairment associated with autism, the methods initiated by a therapist can be effective for these young people.
[49] C2 of JHB, p614.
Dr Harcourt told the Tribunal that while the feeding therapy may have been unsuccessful when the Applicant was 8 or 9, the modality has changed greatly over the past 8 to 10 years with a lot more neurodiverse affirming protocols such as responsive feeding which would seem to align with the Applicant’s difficulties. She explained that because feeding therapists are also counsellors, they use different counselling mechanisms to break down the barriers to food while assessing environmental factors or bodily cues that are causing the person distress.
Regarding the removal of food from the diet of someone with very restrictive eating, Dr Harcourt said:
So in accordance with the weight management guidelines, which I was part of developing with the Royal Children's Hospital [Melbourne], so the weight management service that is operational there, we aim to not ever remove a food, but only ever add foods into the repertoire of young people when they have restricted eating.
…
We never ever remove proteins. We’re always aiming for protein adequacy within the first instance and managing all other foods around that.
She explained that removing food because of concerns about weight management or growth profiles does have deleterious effects in relation to those foods and creates an inconsistency in the foods that the person has access to going forward. Her approach to working with someone who has very restricted food intake is to aim for nutritional adequacy using the foods the person prefers in the first instance. She will then fortify those foods with additional supplements as required.
In Dr Harcourt’s view, the supplements recommended by Mr Hann in his most recent 2023 plan review are not required to achieve nutritional adequacy. An oral nutritional supplement, such as Sustagen Hospital or a similar product, would be sufficient. In describing the reasoning behind her recommendation:
We have to be led via the nutrition guidelines and that means that we can only act within that window. And at the moment a lot of those supplements that were suggested are outside of that recommended window and are not supported by randomised control trials.
Dr Harcourt explained a supplement like Sustagen has adequate Omega threes, prebiotics and probiotics, is nutritionally complete for proteins, carbohydrates and all other multivitamins the Applicant needs. Sustagen and other similar brand formulations are considered complete nutrition sources and can be used as the sole nutritional source for an extended period if required. She recommends adjusting the amount of supplement the Applicant needs to meet his nutritional requirements whilst also ensuring he can continue to eat the food he likes, such as Smiths chips and Arnott’s shapes. Supplements like Sustagen or Seravit could be purchased over the counter at a pharmacy or via prescriptive scripts which would reduce the cost. The Applicant’s continued growth whilst maintaining a steady weight suggests he is achieving sufficient protein to support that growth. Dr Harcourt confirmed that nutritional adequacy can be achieved without eating a wide variety of foods or following the food pyramid.
Dr Harcourt indicated that the Applicant is now of an age where he can participate in discussions about the need to do some non-preferred things from time to time, noting that everyone has to do certain things that they don’t necessarily like doing. She was of the view that his experience with the iron infusion was a “really positive thing” and that a therapist could apply the same model of learning to encourage eating non favourite foods, for example, because it has a good consequence or helps avoid a bad consequence. Dr Harcourt emphasised the importance of independence and autonomy in food therapy, in line with a person’s capacity.
Dr Harcourt interpreted the recent blood tests for the Tribunal. She said he has hypercholesterolemia but noted his liver function has improved since 2022 which means he is no longer a candidate for non-alcoholic fatty liver disease. His protein levels were in the normal range and his vitamin B12 and iron levels were fine. She confirmed there was nothing in the Applicant’s blood tests which caused her any alarm and it was not apparent from the results alone how restricted his diet is.
The Applicant and his participation in the proceedings
By way of background, the matter was reconstituted relatively late in the proceedings pursuant to section 43 of the ART Act to a different Member which meant there was no engagement between this Tribunal, the Applicant or his representative prior to the final hearing. After hearing evidence from the Applicant’s mother on the first day, it became apparent to the Tribunal that the Applicant likely had sufficient communication to participate in the proceedings. The Tribunal informed the parties that it seemed an unfortunate situation that the voice of a participant aged 15 and a half years was not more directly included in the material before the Tribunal. The Applicant’s mother indicated that she would happily arrange for the Applicant to speak to the Tribunal. Despite the reported concerns about facilitating the Applicant’s attendance at the GP or other face to face therapy sessions, the Applicant’s mother was confident the Applicant would agree to speak with the Tribunal. Subsequently, arrangements were made for him to speak with the Tribunal via video the following week, prior to closing submissions. It was made clear to both representatives that the Tribunal would have an informal conversation with the Applicant, with everyone else welcome to observe.
Noting that the arrangements occurred late in the piece, with minimal notice given to the Applicant and in circumstances where it was relatively unclear what knowledge he had of his NDIS plan and/or the Tribunal proceedings, the Tribunal did not ask the Applicant to take an affirmation. The conversation took place over 20 minutes, with the Applicant’s mother and father electing to leave the room, apparently at his request. The Tribunal deliberately kept the conversation relatively high-level, briefly discussing his understanding of his NDIS plan, his recent completion of the White Card, school, body boarding, swimming and what he thought about the various supports recommended by the OT Ms MJC including psychology, OT, speech therapy and exercise physiology. The Applicant knew there was a request to include a weighted blanket and KloudSac in his plan. He also initiated a brief discussion about feeding therapy, telling the Tribunal that he didn’t find it helpful and that he was forced to eat things that he couldn’t digest properly. He explained he uses the KloudSac at school when he is stressed and anxious and likes to get under it and to be by himself in a separate room. When asked how many times he used it last week, he paused for quite some time and said, “too many times to count”.
The Applicant was observed to speak clearly and coherently, providing appropriate responses to questions. While it was understandably a somewhat unusual experience for him to speak to a stranger in these circumstances, the Tribunal was impressed with his preparedness to engage and his seemingly calm demeanour. The Tribunal finds it difficult to reconcile the Applicant’s mother’s evidence that she needs to spend a week preparing the Applicant to go to the GP with her facilitation of his attendance before the Tribunal and his ability to engage in a courteous manner for over 20 minutes.
A recent ART Practice Note: (2024/1): Children in NDIS Jurisdictional Proceedings, highlights the ART’s Child Safety Policy which has been developed in the context of the Commonwealth’s Child Safety Framework and which is applicable to the participation of children in ART events.[50] In acknowledging the NDIS Act’s broader legislative intent, the Practice Note states: “It would be appropriate for Members to consider these matters in exercise of the powers and discretions conferred on the Tribunal under Part 4, Division 5, Sub-division A (ss49 – 55) of the Administrative Review Tribunal Act 2024 (Cth)”.
[50]
Noting a key objective of the NDIS Act is to give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities[51] and the Convention on the Right of the Child[52] the Tribunal is of the view that there should be a presumption in favour of the involvement of young people with disability in NDIS proceedings which concern them. In circumstances where the Tribunal is required to make a decision directly affecting the life and interests of a participant or prospective participant, there should be good reason to depart from an otherwise standard practice and principle that such a person has the right to be heard. Such an approach is not, in the Tribunal’s view, inconsistent with the role of child representatives[53] nor principles governing the best interests of the child.[54] Particularly for adolescents, such an approach would be complimentary – recognising the reality of their unique developmental position between childhood and adulthood and their evolving capacity for greater independence and autonomy over their lives. The Respondent’s Operational Guideline – Child Representatives, dated 28 October 2024 acknowledges this reality:
As a child gets closer to turning 18, we know their ability to make decisions and do things for themselves may increase. This means they may not need a child representative anymore. As much as possible, we want to include them in decisions about their own care and supports.[55]
[51] See Article 7 of the Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNTS 3 (entered into force 3 May 2008).
[52] See Article 12 of the Convention on the Rights of the Child, General Assembly Resolution 44/25, opened for signature 20 November 1989, (entered into force 2 September 1990).
[53] See section 74 and 76 of the NDIS Act.
[54] See Section 5(f) of the NDIS Act.
[55] p15.
Adjustments can and should be made to Tribunal processes to facilitate the engagement and involvement of adolescent participants or prospective participants in a manner which takes account of their age, maturity and communication ability as well as accessibility requirements arising from an impairment.
While undoubtedly there will be situations where it is not possible or appropriate for a young person to speak informally with the Tribunal or give evidence, there remain a multitude of ways to ensure their voice or perspective can be directly heard and considered including artwork, photos, a letter and voice or video recordings. The Agency, lawyers, advocates, parents, and the Tribunal all have a role to play in ensuring children and young people with disability enjoy opportunities to participate in administrative decision-making processes which affect them and to practice making or influencing decisions about their lives before they turn 18 years of age.
CONSIDERATION
Weighted blanket
The Respondent submitted that the weighted blanket is not an item that can be considered a NDIS support due to the new Transitional Supports Rules. Schedule 2 of the Transitional Support Rules outlines the supports that will generally not be considered a NDIS support.
By virtue of these legislative changes, the Tribunal must first determine whether the support is excluded by Schedule 2. If the Tribunal is satisfied that the item is excluded, then no further analysis is required as section 34(1)(f) cannot be met. If the Tribunal is not satisfied as to the weighted blanket’s exclusion, then the Tribunal must consider whether the request for a weighted blanket satisfies all of the other criteria in section 34(1) as a reasonable and necessary support.
Item 1 of Schedule 2 relevantly refers to day-to-day living costs (accommodation and housing) including (i) standard household (including garden) items, appliances, tools and products; and (j) standard furniture, fixtures or fittings. ‘Standard item for a participant or prospective participant’ is defined in section 4 of the Transitional Supports Rules as “an item that is not modified or adapted to address the functional impairments of the participant or prospective participant”.
There is no guidance on what is meant by the terms ‘modified’ or ‘adapted’ in the Act, the Transitional Support Rules or the relevant Guidelines. The Macquarie dictionary defines modified as “to change somewhat the form or qualities of; alter somewhat”.[56] It defines adapted as “to make suitable to requirements; adjust or modify fittingly”.[57]
[56]
[57]
On one view, a weighted blanket has clearly been modified or adapted from that of a regular blanket, by adding additional weight. The additional weight is understood to provide a soothing and calming effect for some people who experience emotional dis-regulation, as is commonly the case for people who live with ASD. The Tribunal is sympathetic to the view that this could satisfy the definition of an item modified or adapted to address the functional impairment of the Applicant, namely his difficulty self-regulating his emotions.
On the other hand, the Respondent contended that the words “to address the functional impairment of the participant or prospective participant” suggest any change to an item should be linked directly to the intended individual and their particular functional impairment under a relevant domain.[58] It was unclear whether the modification or adjustment was required at the time of manufacturing/production of the item, and/or during a process of prescription or recommendation by an allied health clinician. For example, the Applicant’s treating OT recommended a 10kg weighted blanket due to his height and weight, rather than continuing to use a 3kg blanket purchased when he was a lot smaller.
[58] See section 24 of the Act – communication, learning, social interaction, mobility, self-care or self-management.
The Tribunal is conscious that Parliament, through its recent legislative amendments, has made significant changes to the operation of the NDIS, now explicitly excluding a range of items associated with day-to-day living costs. In an Explanatory Statement to the Transitional Supports Rules, the purpose of the new rules are explained:
The definition of NDIS support clarifies what supports are provided through the National Disability Insurance Scheme (NDIS, Scheme) in a manner that is consistent with the original intention of the Scheme. It also reinforces the constitutional basis for the supports that are funded and provided under the Scheme, which is necessary as the NDIS transitions to a new budget-based planning framework.
The Instrument is a transitional rule made under item 138 of Schedule 1 to the Amending Act and will only remain in place until permanent NDIS rules are made under section 209 of the NDIS Act
…
As noted above, one of the key changes made by the Amending Act was to insert a new concept of ‘NDIS support’ into the NDIS Act. This concept of NDIS support appears in numerous places throughout the Amending Act and is central to the operation of the future of the NDIS in a number of ways.
The definition will provide greater clarity around the supports that can be funded by the NDIS and those that cannot. This approach is consistent with the original intention of the Scheme to provide supports to people with significant and permanent disability and people who are in need of early intervention supports. It is also consistent with the recommendations of the NDIS Review in that it focuses on the needs of a participant, rather than a diagnosis.[59]
[59]
In line with Parliament’s intent that the NDIS should not fund day-to-day living costs, the Tribunal is mindful of the Respondent’s contention that the weighted blanket was proposed to be used to assist the Applicant to sleep. It was therefore not to be used solely for assisting his emotional regulation. The Tribunal considers that everyone needs a blanket or bed covering of some description. Each individual, regardless of disability, will have different preferences or needs associated with the type of bed covering they use including their geographical location, whether they have allergic reactions to particular materials, the size of their bed and the desired frequency of washing or dry cleaning etc. There was no evidence before the Tribunal that a weighted blanket costing $360 was significantly more expensive than other types of bed coverings, noting the Applicant is an adolescent. There was evidence that a larger blanket was required because of the Applicant’s size – a factor not arising from his disability.
The Tribunal is inclined to agree with the Respondent that a weighted blanket proposed to be used for nightly sleep is probably not a NDIS support for these reasons. However, as there is some degree of doubt as to the intended applications of the words modified or adapted, and therefore whether such an item is excluded by Schedule 2, the Tribunal will proceed to consider whether the weighted blanket meets all the criteria under section 34(1).
The Applicant’s mother contended that a weighted blanket would enable the Applicant to hide under it when having a meltdown and provides the requisite level of weight or pressure to help him calm down. She said he had outgrown his 3kg weighted blanket and that a new 10kg blanket would assist him to have a better quality of sleep. Ms MJC recommended a Neptune 10kg portable weighted blanket which would apply even pressure.
The Respondent submitted that funding for a weighted blanket does not support his social and economic participation in accordance with section 34(1)(b) of the Act because essentially, it would be used for difficulties with emotional regulation in the home. It was contended that funding for psychological support is a more appropriate way to assist the Applicant to better regulate his emotions, both at home and in the community.
The Tribunal does not dispute the role of psychological support for the Applicant, however the Respondent’s submission appears to apply quite a narrow definition of social participation, restricting it to activities in the community or outside his home. The home is a key site of socialisation, particularly for children and adolescents; helping them to learn the norms of socially acceptable behaviour which can then be applied more broadly outside the home, whether at school, at a supermarket or in a restaurant. The Tribunal does not agree that a weighted blanket cannot play a role in supporting the Applicant to undertake activities which support his social participation. Developing his capacity to self-regulate in the home and to interact with his family within the bounds of socially acceptable behaviour (noting his age and all the regular difficulties of adolescence) can, in the Tribunal’s assessment, help facilitate his social participation, both in the home and beyond. Much of what he learns and practices in the home with respect to self-regulation can also be applied, in time, outside the home.
The Respondent also submitted that funding for a weighted blanket does not meet section 34(1)(e), which takes account of what it is reasonable to expect families, carers, informal networks and the community to provide. The Respondent accepts the weighted blanket is intended to help the Applicant self-regulate, however it contends that it is also proposed to help him sleep. As a reasonably inexpensive item which will be used on a nightly basis to furnish the Applicant’s bed, the Respondent submits that the weighted blanket should be provided by the Applicant’s family.
The Tribunal agrees. The Applicant has managed without an appropriately sized weighted blanket for approximately 2.5 years while the matter has been before the Tribunal. The Tribunal was not persuaded by the Applicant’s mother that the item is so essential to her son’s day-to-day or week-to-week wellbeing that she has allowed him to go without one simply out of principle that the NDIS should pay for it. Noting that the NDIS is not required to pay for every possible expense associated with a child’s disability, it seemed a rather unfortunate position for the Applicant’s mother to have taken throughout the proceedings. The Tribunal accepts that the Applicant probably would derive some benefit from a larger weighted blanket, however that alone is not the test for what should be funded by the NDIS.
The Tribunal finds that the weighted blanket is not a reasonable and necessary support pursuant to section 34(1)(e).
Rules 5.1 and 5.2
For completeness, Rules 5.1 and 5.2 of the NDIS Supports Rules are relevant to this discussion. Rule 5.1(d) provides that a support will not be funded or provided if “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”. Rule 5.2(a) relevantly states:
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;
In the recent Federal Court decision of Warwick v National Disability Insurance Agency,[60] the Hon. Justice Perram found:
[14] Paragraph 5.1(d) is contained in a legislative instrument. The expression ‘day-to-day’ living costs is not defined in that instrument, nor does it bear a technical meaning. Thus, it bears its ordinary meaning. According to the Macquarie Dictionary, the ordinary meaning of ‘day-to-day’ is ‘ordinary, happening every day’. Perhaps the word ‘everyday’ captures these two concepts. The ordinary meaning of ‘living costs’ is those expenses which are incurred in the course of living for the purpose of living. Thus ‘day-to-day’ living costs’ are those everyday expenses which are incurred in the course of living for the purpose of living. This meaning is confirmed by the examples which appear in brackets in paragraph 5.2(d) – ‘rent, groceries and utility fees’ – which are canonical examples of day-to-day living costs.
[15] The costs of engaging an agent to sell one’s home, the costs of moving from one home to another, conveyancing fees and the payment of stamp duty on the conveyance of a new home are not everyday costs which are incurred in the course of living for the purpose of living. To the contrary, they are extraordinary expenses to which not everyone has the good fortune to become liable and which, even amongst those who are that fortunate, can scarcely be described as ‘day-to-day’ costs.
[60] [2024] FCA 616.
In obiter, the Court further observed:
[19] I would not have accepted that the Tribunal made any error in its approach to the meaning of the words ‘solely and directly’ which was, with respect, plainly correct. The fact that everyday living costs are usually only incurred for one purpose – living may be contrasted with the multiple motivations people often have for moving home. The point of paragraph 5.2(a) is to permit recovery of everyday costs where those costs relate solely to disability support needs. Thus the telephone bill is out, but transport costs for a person unable to drive or to utilise public transport because of disability are in. Expenses which are disability-related but which would be incurred anyway even if the person did not have disability are not recoverable. Thus the face that telephone is used for purposes which relate to disability does not make it recoverable if it is used for other non-disability-related purposes too.
Had the Tribunal found that the weighted blanket was not excluded by the Transitional Support Rules and was a reasonable and necessary support pursuant to section 34(1), Warwick is good authority for concluding that Rule 5.1 would still prevent the funding of a weighted blanket to be used for both emotional regulation (disability-related purpose) and sleeping (non-disability-related purpose) because sleeping is an everyday part of living which everyone does irrespective of whether they have a disability. Sleeping also necessarily involves certain routine expenses, namely a bed frame, mattress, pillows, linen and bed covering/blanket.[61]
[61] See [10].
KloudSac
The Applicant’s Mother gave evidence that the Applicant does not use the KloudSac like a bean bag or bed, but rather lies underneath it to feel the weight/pressure. He has used a KloudSac, both in primary and secondary school. The Respondent contended that the Applicant was requesting the KloudSac for purposes similar to those in relation to a weighted blanket.
The Tribunal is satisfied that the KloudSac, a foam filled bean bag alternative, is a type of household furniture that is routinely used as a sofa or bed. The fact that not every household has a KloudSac does not mean it is not a standard household item – most houses have a sofa/couch and/or bed for its occupants to rest on. Similarly, whilst it appears the Applicant’s schools have provided KloudSacs for use by students with sensory disabilities, this does not mean the KloudSac has been modified or adapted in either a general or specific sense – it is simply a different type of furniture. For the avoidance of doubt, the Tribunal accepts the KloudSac is a type of furniture that students living with ASD may prefer and the Applicant clearly derives some comfort from using it, despite not in accordance with its intended use as a type of furniture.
The Tribunal is satisfied that Schedule 2 of the Transitional Supports Rules excludes a KloudSac as a NDIS support.
Further, as the Tribunal has found that it is reasonable to expect the Applicant’s parents to provide a weighted blanket, the provision of a KloudSac would essentially duplicate an existing item used to apply pressure/weight to the Applicant to help him self-regulate. The funding of a KloudSac would arguably be contrary to Rule 3.1(a) of the NDIS Supports Rules regarding comparable supports achieving the same outcome at a substantially lower cost. The Supports Rules are discussed in greater detail below.
Nutritional supplements
The Tribunal uses the term nutritional supplements as an all-encompassing term for the various non-food items currently consumed by the Applicant, as set out at paragraph 35 of this decision.
The Applicant’s mother submitted that because the Applicant is unable to meet his nutritional needs by eating a regular variety of food, and his inability to eat arises from impairments caused by Autism, the NDIS should cover the cost of his supplements. In her view, such supplements are both reasonable and necessary. While there might have been some merit to this argument, the Transitional Supports Rules now require the Tribunal to be satisfied that the Applicant’s supplements are not excluded as a NDIS support.
Item 4 of Schedule 2 (day-to-day living costs – lifestyle) refers at subparagraph (s) to non-prescription medicines, sunscreens, weight loss products, vitamins, sports or athletic supplement, and homeopathic medicines.
Item 12 of Schedule 2 (Health) refers at subparagraph (d) to pharmaceuticals (including prescription medicines and non-prescription medicines), biological medicines, vaccines, sunscreen, weight loss products, vitamins, sport and athletic supplements, and homeopathic medicines.
The Respondent directed the Tribunal to the Therapeutic Goods Administration Act 1989 (Cth) (TGA) which defines ‘medicine’ as “therapeutic goods (other than biologicals) that are represented to achieve, or are likely to achieve, their principal intended action by pharmacological, chemical, immunological or metabolic means in or on the body of a human”. Therapeutic goods is relevantly defined, amongst other things, as likely to be taken for ‘therapeutic use’. Therapeutic use means ‘use in or in connection with’:[62]
(a) preventing, diagnosing, curing or alleviating a disease, ailment, defect or injury in persons; or
(b) influencing, inhibiting or modifying a physiological process in persons; or
(c) testing the susceptibility of persons to a disease or ailment; or
…
[62] Section 3 of the Therapeutic Goods Administration Act 1989 (Cth).
The Respondent submitted that having regard to the definition of medicine under the TGA, Schedule 2 excludes both prescription and non-prescription medicines as well as vitamins, prebiotics, probiotics and other supplements.
The Tribunal acknowledges the legislative changes are recent and the Applicant’s representative was understandably frustrated by the suggestion the Tribunal may not be able to consider whether such supplements are reasonable and necessary because of their potential exclusion under Schedule 2. Noting Items 4 and 14 above, the Tribunal is satisfied that Schedule 2 explicitly excludes the types of supplements raised in these proceedings. Accordingly, they are not NDIS supports pursuant to sections 10 and 34(1)(f) of the Act.
Nutrition and Feeding therapy with Mr Hann
The request for nutrition and feeding therapy with Mr Hann is not precluded by Schedule 2. Item 34 - Therapeutic supports is contained in Schedule 1 of the Transitional Supports Rules which are considered NDIS supports unless otherwise provided. Accordingly, the Tribunal will proceed to consider whether this support is reasonable and necessary pursuant to section 34(1).
Section 34(1)(c) and Rule 3.1
The Tribunal’s task in reviewing the decision is to determine whether the requested support, based on the evidence, is ‘reasonable and necessary’ such that it justifies the expenditure of public funds. The Tribunal must be satisfied that the Applicant’s claim for nutrition and feeding therapy with Mr Hann meets all the criteria in section 34(1) of the Act. As outlined above, this includes section 34(1)(c) regarding value for money. Rule 3.1 assists this analysis.
Rule 3.1 (a) – Comparable supports would achieve the same outcome at a substantially lower cost
The Respondent contended that Mr Hann’s hourly costs of approximately $295 is well above the NDIS price guide of $193.99 for dietician support.[63] His nutrition and feeding therapy costs $8,305 annually, comprising:
(a)$2,360 for 8 hours per year (2 hours per quarter of 1:1 parent consultation)
(b)$2,360 for 8 hours per year (2 hours per quarter of nutrition assessment and planning with parent)
(c)$1,500 annual access to Kids Feeding Clinic Online Support
(d)$885 for 3 hours report writing.
[63] A3 of JHB, p488.
The Respondent proposed to fund 23 hours of dietician supports (approximately $4,462) and 18 hours of food exposure/feeding therapy by a suitability qualified therapist (such as a dietician, speech pathologist, psychologist or OT) (approximately $3,492). The Respondent’s proposal, though only marginally cheaper overall, would involve the participation of the Applicant and provide more than double the hours of support provided by Mr Hann.
Rule 3.1 (b) – Evidence the support will substantially improve life stage outcomes and be of long term benefit to the Applicant
There was limited, if any evidence, to support the conclusion that Mr Hann’s therapy will substantially improve the life stage outcomes and be of long-term benefit to the Applicant, noting he and the Applicant have never properly met or had a conversation. Mr Hann and the Applicant’s mother conceded that despite 3 years of work together, there had been very little change in the rigidity of the Applicant’s eating. While the Applicant is now accepting an iron supplement, the Tribunal is satisfied that the fear of or desire to avoid an iron infusion has at least contributed towards his preparedness to take that supplement.
Rule 3.1 (c) – Whether the funding or provision of the support is likely to reduce the cost of the funding of supports for the Applicant in the long term
Similarly, there was no evidence that the current approach would lead to reduction in support in the future. Mr Hann thought it may be many years before the Applicant would tolerate a greater variety of food and opined the Applicant could be reliant on supplements for the rest of his life.
Rule 3.1 (f) – Whether the support will increase the Applicant’s independence and reduce his need for other kinds of supports.
Perhaps of greatest concern to the Tribunal was the distinct lack of acknowledgement or strategy by Mr Hann with respect to building the Applicant’s independence now that he has reached adolescence. The Tribunal observed what appeared to be an over-reliance by the Applicant’s mother on Mr Hann in circumstances where there has not been significant changes or improvements and where one would expect she could now independently apply some of the learnings obtained over the past 3 years.
The Tribunal was troubled by the Mother’s repeated references to a chemical imbalance in the Applicant’s brain wherein she indicated Mr Hann could explain the issue further. While Mr Hann stated such a description was an ‘oversimplification’, it was not apparent to the Tribunal how his parent-focused approach has resulted in a more nuanced understanding by the mother in relation to her son’s difficulties. Rather the Applicant’s mother seems to hold somewhat reductionist and overly pessimistic views about her son’s future.
The Tribunal is not satisfied that the nutrition and feeding therapy with Mr Hann represents value for money pursuant to section 34(1)(c).
Section 34(1)(d) and Rule 3.2
Section 34(1)(d) concerns whether the supports will be or are likely to be effective and beneficial having regard to current good practice. Rule 3.2 assists this analysis and requires the Tribunal to consider available evidence of the effectiveness of the support for others in like circumstances.
Rule 3.2 – Effective and beneficial and current good practice
The Applicant’s mother indicated the Applicant neither had the capacity nor the inclination to participate in therapeutic interventions around his restrictive eating. She was also very sceptical about the ability of face-to-face therapy to have any meaningful impact on the Applicant’s feeding difficulties. For this reason, she was of the view that her arrangement with Mr Hann was the most suitable method to respond to the Applicant’s eating disorder. She acknowledged that there has been very little change in the Applicant’s eating during this time.
Mr Hann told the Tribunal that he dealt directly with parents because “it was difficult to engage with [the children/young people] just due to the nature of their autism”. He acknowledged that if one can get a young person to engage in a responsive feeding program that it can be very helpful. He also explained that many families struggle to find dieticians in their local area and telehealth helped to fill this gap. His treatment approach was often used for clients where they were “at the end of the line”, having tried many other options. There was no evidence before the Tribunal about the provision of any regular therapeutic interventions prior to the Applicant turning 8 or 9 years of age. It does not appear that he has received any regular therapeutic supports beyond a 6-month period of unsuccessful feeding therapy, when he was 8 or 9 years old, and a period of engagement with a psychologist focused predominantly on the transition from primary to secondary school 3 years ago. The Tribunal is not satisfied that there have been regular and sustained attempts to support the Applicant’s direct engagement with a specialised therapist who can work with him using neuro-diverse affirming practices to respond to his eating disorder. Accordingly, the Tribunal does not accept that the Applicant is ‘at the end of the line’ or that other treatment options have been exhausted.
Dr Harcourt said the “gold standard” treatment for eating disorders requires the involvement of the participant. She questioned the efficacy of the current parent-led approach which has the potential to be detrimental to the Applicant and said the decision to remove protein from the Applicant’s diet, under the guidance of Mr Hann, went against the weight management guidelines developed by the Royal Children’s Hospital in Melbourne. In her view, the Applicant should commence face to face fortnightly feeding therapy sessions with a psychologist, OT, dietician or speech pathologist who has post-graduate qualifications in disability and Responsive Feeding techniques. This person would ideally work in liaison with a dietician responsible for nutrition planning.
There was consensus of expert opinion between Mr Hann and Dr Harcourt that face-to-face Responsive feeding therapy can be helpful and that a clinician specialised in disability has better prospects than a parent of achieving some improvement. However, both experts were conscious that it requires the engagement or participation of the participant.
It was clear from the Tribunal’s interactions with the Applicant that he was not confident about the utility of feeding therapy. The Applicant’s mother repeatedly resisted suggestions that such an approach could be helpful, or at the very least, worth trying. While the Tribunal cannot exclude the possibility that the Applicant’s mother has directly or indirectly influenced the Applicant’s resistance or hesitancy, she clearly does not encourage his engagement with any form of intervention beyond what she provides under the direction of Mr Hann. It was perplexing to the Tribunal that despite the Applicant’s mother’s expressed concerns about the Applicant’s mental and physical health, she adopted a somewhat binary position that only Mr Hann could assist her son and seemed unwilling to exert any parental influence to encourage the Applicant’s engagement with therapy beyond that. This was made even more confusing by the swiftness within which she facilitated the Applicant’s attendance before the Tribunal, suggesting she can apply appropriate forms of parental influence when required. The Applicant’s acquiescence to this request also supports a conclusion that he has sufficient maturity to comply with doing certain things he may prefer not to do.
While it may be the case that the Applicant will refuse to participate in any face-to-face therapy, this does not mean the current alternative with Mr Hann is reasonable and necessary. The Tribunal is not satisfied that Mr Hann’s nutrition and feeding therapy is effective and beneficial or in line with current good practice. Section 34(1)(d) is not met.
Section 34(1)(f)
The Tribunal is satisfied that Nutrition and Feeding therapy with Mr Hann could be a NDIS support as it is a therapeutic support in Schedule 1 of the Transitional Supports Rules.[64]
[64] See item 34.
However, section 34(1)(f) also employs the words ‘for the participant’, suggesting these words have work to do beyond an analysis of whether something is a NDIS support or not.
The Tribunal accepts that therapists often play an important role in terms of educating and coaching parents about a particular treatment approach or modality. This is clearly an integral part of any child or adolescent’s therapy and supports parents to apply practices in the home environment with consistency and regularity and ensures two-way communication between parents and therapists, particularly when a child is young. However, Mr Hann has been engaging with the Applicant’s mother for an extended period without any involvement by the Applicant despite his current age of 15 and a half years and his more than adequate ability to communicate.
Noting his current age, communication abilities and intention to start part-time work in a supermarket (which seems entirely appropriate and realistic based on the Tribunal’s observations of Applicant’s communication), the Tribunal is not satisfied that there is sufficient nexus between the therapy approach used by Mr Hann with the Applicant’s mother for it to be considered a NDIS support for the participant. Accordingly, the Tribunal finds that section 34(1)(f) is not met.
Plan management
The Respondent submitted that the management of the Applicant’s NDIS funding is a matter which must be specified in his statement of participant supports, and therefore must be considered by the Tribunal when making its decision.
The Applicant’s mother self-manages the Applicant’s NDIS funding. The Tribunal heard evidence that she has used capacity building funds in the Applicant’s plan to pay for Mr Hann’s services while this matter has been before the Tribunal.
Section 44(1) applies to the Applicant’s mother as his child representative:
(1) For the purposes of paragraph 43(3)(b), this subsection applies in relation to a participant if:
(a) the participant is an insolvent under administration; or
(aa) the participant has been convicted of an offence against a law of the Commonwealth, a State or a Territory that:
(i) is punishable by imprisonment for 2 years or more; or
(ii) involves fraud or dishonesty; or
(b) the CEO is satisfied that the participant’s management of the funding for supports under the plan to a particular extent would:
(i) present an unreasonable risk to the participant; or
(ii) permit the participant to manage matters that are prescribed by the National Disability Insurance Scheme rules as being matters that must not be managed by a participant; or
(c) the CEO is satisfied that section 46 (acquittal of NDIS amounts) would be unlikely to be complied with if the participant were to manage the funding for supports under the plan to a particular extent. (Tribunal’s emphasis).
The Respondent submitted that while such spending was contrary to section 46 of the NDIS Act, it occurred prior to 3 October 2024 when the legislative changes came into effect. Further, the new section 46 introduces significant changes including the possibility of a debt being raised against an Applicant who does not spend NDIS funds in accordance with their plan. Schedule 2 of the Transitional Rules also precludes the use of consumable funding being spent on non-NDIS supports.
The Applicant’s mother told the Tribunal that she would not spend further funding on Mr Hann’s services until the Tribunal made its decision. The Tribunal accepts that breaches of section 46 were not routinely monitored by the Respondent in the past and that the Applicant’s mother now intends to spend the Applicant’s funds in accordance with his plan. The Respondent did not submit that the current arrangement with respect to self-management should change.
Having considered the evidence, the Tribunal is satisfied that self-management should continue.
Reasonable and necessary supports
As mentioned above, the Applicant’s current plan includes:
(a)26 hours for OT ($5,043.75 – Capacity Building (CB) – Improved Daily Living)
(b)12 hours for psychologist ($2,572.92 – CB – Emotional Regulation and Behaviour)
(c)12 hours for speech pathologist ($2,327.88 – CB – Improve Communication)
(d)10 hours per week for community access (2 hours per weekday) (Capacity Building - Increased Social and Community Participation)
(e)A total consumables budget of $500 to purchase low-cost assistive technology which is a NDIS support.
The Applicant has not had the opportunity to routinely engage with an OT, psychologist or speech pathologist for several years, with the funds for these therapies being spent on Mr Hann’s nutrition and feeding therapy. The Tribunal queried whether it could be satisfied that supports that are not used, and indeed firmly rejected by the Applicant’s mother, could be considered reasonable and necessary. The Respondent submitted that irrespective of the Applicant’s mother’s position, the supports proposed were reasonable and necessary in accordance with the legislative requirements. They also reflect broadly the recommendations made by the OT, Ms MJC, as well as Dr Harcourt.
Noting that the Tribunal is not satisfied that all possibilities have been exhausted to support the Applicant to work on his eating difficulties and emotional regulation, the Tribunal is persuaded that the inclusion of such supports are reasonable and necessary. Ultimately it is a matter for the Applicant whether he chooses to engage with some or all of the supports that the Tribunal intends to include in his statement of participant supports. However, it seems the Applicant has far greater prospects of engaging with different therapists and deriving some benefit from their interventions if he has the encouragement and support of his parents.
The Respondent also proposed 2 additional supports which it submits will respond to the Applicant’s needs:
(a)23 hours of dietician supports related to nutrition planning;
(b)18 hours of food exposure therapy comprising:
(i)12 hours of food therapy to increase the Applicant’s exposure to a variety of foods;
(ii)3 hours of report writing; and
(iii)3 hours of multidisciplinary liaison with the applicant’s dietician.
Dr Harcourt recommended that dietician sessions be conducted face-to-face with the Applicant present.[65] The Tribunal is satisfied that such a recommendation is in accordance with best practice with respect to treating eating disorders. The Tribunal is also satisfied the Applicant has the requisite capacity to communicate with therapists.
[65] C2 of JHB, p616.
Dr Harcourt also recommended during her evidence at the hearing that any food exposure therapy should be conducted by a suitably qualified therapist who has post-graduate qualifications in disability and Responsive Feeding therapy, such as a speech therapist, OT, dietician or psychologist. In her view the sessions should be face-to-face with the Applicant and hands on. The Tribunal is equally satisfied that this recommendation is in accordance with best practice with respect to treating eating disorders and provides the Applicant with the best chance of developing his own capacity to manage his own nutrition needs and increase his tolerance of foods. The Tribunal is satisfied that these supports meet section 34(1) and the relevant rules.
DECISION
The Tribunal sets aside the decision under review and in substitution decides that the following reasonable and necessary supports will be funded in the Applicant’s statement of participant supports:
1. 23 hours of dietician supports related to nutrition planning involving face-to-face sessions with the Applicant;
2. 18 hours of food exposure therapy by a suitability qualified therapist who has post-graduate qualifications in disability and Responsive Feeding therapy, such as a speech therapist, occupational therapist, dietician or psychologist comprising:
a. 12 hours of face-to-face food therapy with the Applicant;
b. 3 hours of report writing; and
c. 3 hours of multidisciplinary liaison with the applicant’s dietician.
3. All other reasonable and necessary supports in the existing statement of participant supports, excluding any one-off assistive technology already funded, shall be replicated for a period of 12 months until the reassessment date.
4. The management of funding for reasonable and necessary supports under the Applicant’s plan is to remain the same.
5. The date by which the Respondent will review the Applicant’s plan is 12 months after the day on which the reasonable and necessary supports are included in the Applicant’s statement of participant supports.
Date(s) of hearing: 20, 21 and 26 November 2024 – by video Applicant: Applicant’s mother Counsel for the Respondent: Ms Josie Dempster Solicitors for the Respondent: Ms M Macor, National Disability Insurance Agency
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