DRXK and National Disability Insurance Agency
[2024] AATA 3289
•16 September 2024
DRXK and National Disability Insurance Agency [2024] AATA 3289 (16 September 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2023/0077
Re:DRXK
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Member L Proske
Date:16 September 2024
Place:Adelaide
Pursuant to s 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth) the decision under review is set aside and the matter is remitted to the Respondent for reconsideration in accordance with directions that:
The statement of participant supports specifies that the reasonable and necessary supports include:
1.1Core Support
a) 208 hours of Assistance with Self-Care Activities at the Standard Weekday Daytime rate
1.2Capacity Building Support
a) 48 hours per year of Level 2 support coordination
b) 23 hours per year of psychology
c) 26 hours per year of exercise physiology
d) 70 hours per year of occupational therapy (inclusive of provider travel)
e) 70 hours per year of speech therapy (inclusive of provider travel)
f) funding for ABA based therapy, comprised of:
i)306 hours at the Therapy Assistant Level 2 rate plus 75 hours for provider travel
ii)40 hours at the Other Professional rate
The supports referred to in paragraphs 1.2(d) and 1.2(e) above are to be stated supports.
The support referred to in paragraph 1.1(a) above replaces the existing funding for support worker assistance.
The support referred to in paragraph 1.2(a) above replaces the existing funding for Support Coordination.
The supports referred to in paragraph 1.2(b), 1.2(c), 1.2(d), 1.2(e) and 1.2(f) above replace the existing funding for Improved Daily Living.
All other supports in the Applicant’s existing statement of participant supports are to be replicated pro-rata from the date on which the supports specified above are included in the Applicant’s statement of participant supports until the reassessment date, excluding:
a)any one-off assistive technology already used; and
b)any funding for Improved Relationships (CB Relationships).
The management of funding for reasonable and necessary supports under the Applicant’s plan is to remain the same as the management of funding for those supports as specified in the Applicant’s current statement of participant supports.
The date by which the Respondent must reassess the Applicant’s plan is to be 12 months after the date on which the supports in paragraph 1 above are included in the Applicant’s statement of participant supports.
........[sgnd]........................................................
Member L Proske
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – child participant – applied behaviour analysis – occupational therapy – speech therapy – support worker assistance – exercise physiology – decision set aside and remitted to the Respondent for reconsideration in accordance with directions
Legislation
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
Cases
Drake and Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409
McGarrigle v National Disability Insurance Agency [2017] FCA 308
Frugtniet and Australian Securities and Investments Commission [2019] HCA 16
XXWC and NDIA [2020] AATA 923
PBZB and National Disability Insurance Agency [2023] AATA 3385
Secondary Materials
National Disability Insurance Agency, NDIS Operational Guideline – Reasonable and Necessary Supports (6 October 2023) <Reasonable and necessary supports | NDIS>
National Disability Insurance Agency, NDIS Operational Guidelines – What principles do we follow to create your plan? (25 September 2023) <What principles do we follow to create your plan? | NDIS>
REASONS FOR DECISION
Member L Proske
BACKGROUND
1. The Applicant (DRXK) is 7 years old and lives with his mother (Ms DRXK), father (Mr DRXK) and older sibling. DRXK has been diagnosed with autism spectrum disorder (Level 3) (ASD) and global developmental delay (GDD).[1] DRXK is a participant of the National Disability Insurance Scheme (NDIS).
[1] Exhibit 1 (E1), T5, 45, 50; Exhibit 3 (E3), A99, 4277.
2. On 17 June 2022, the Chief Executive Officer (CEO) of the National Disability Insurance Agency (Respondent) approved a statement of participant supports (SOPS) under DRXK’s plan (original decision).[2] Funded supports in that SOPS totalled $66,060.88.[3] On 12 September 2022, Ms DRXK requested that the original decision be reviewed.[4] On 18 October 2022, a reviewer confirmed the original decision (internal review decision).[5]
[2] E1, T14, 120-133.
[3] E1, T14, 130.
[4] E1, T12, 105. This request was made under s 100(2).
[5] E1, T2, 24-34. This internal review decision was made under s 100(6).
3. On 6 January 2023, Ms DRXK made an application to the Tribunal for review of that internal review decision and sought an extension of time in which to make that application.[6] The Respondent did not oppose the extension of time application. Under s 29(7) of the Administrative Appeals Tribunal Act 1975 (Cth) (AAT Act), the Tribunal extended the time for making an application to the Tribunal until 6 January 2023. The Tribunal has jurisdiction to review the internal review decision under s 103(1) of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act), in combination with s 25 of the AAT Act.[7]
[6] E1, T1, 1-5.
[7] All sections referred to in these Reasons for Decision, including in footnotes, are sections within the National Disability Insurance Scheme Act 2013 (Cth), unless otherwise stated.
4. Since the review application was made, new NDIS plans came into effect on 5 May 2023 (for the period 5 May 2023 until 3 November 2023) and 4 March 2024 (for the period 4 March 2024 until 4 March 2025).[8] The total funded supports in the 5 May 2023 plan totalled $46,752.01. The total funded supports in the 4 March 2024 plan totalled $93,878.08. Pursuant to s 103(2) of the AAT Act, the review application is also taken to be an application for review of the decisions to approve the SOPS in the new plans dated 5 May 2023 and 4 March 2024.
[8] Exhibit 7 (E7); Exhibit 8 (E8).
ISSUES ON REVIEW
5. On review, Ms DRXK sought to have additional funding included in DRXK’s SOPS for Early Intensive Behavioural Intervention (EIBI)/Applied Behavioural Analysis (ABA),[9] occupational therapy, speech therapy, psychology, exercise physiology supervised hydrotherapy, a developmental educator or the Autism SA school inclusion program, support coordination, and support worker assistance. In the Respondent’s Statement of Facts, Issues and Contentions (RSFIC) it was submitted that 64 hours of Individual Skills Development Improved Relationships (PBS) should continue to be funded in DRXK’s SOPS.[10] This was opposed by Ms DRXK.
[9] Whilst the Tribunal appreciates that EIBI therapy is based on the principles of ABA, the terms EIBI and ABA have been used interchangeably in the evidence, and by the parties.
[10] Respondent’s Statement of Facts, Issues and Contentions (RSFIC), [6].
6. The parties agreed that 48 hours per year of Level 2 support coordination, and 23 hours per year of psychology, are reasonable and necessary supports.[11] At the hearing, Ms DRXK withdrew the request for funding for a developmental educator or the Autism SA school inclusion program.[12]
[11] Respondent’s position on supports other than ABA (RPOS), [15]; Applicant’s closing submissions (ACS), [24(i)]; Transcript of Proceedings (Transcript), 70 [35]-[45] – 71 [1]-[8].
[12] Transcript, 65 [43-47] – 66 [1]-[7].
7. At the conclusion of the hearing, the Tribunal understood the issues for determination by the Tribunal to be:
a)whether funding for the requested supports (EIBI/ABA, occupational therapy, speech therapy, exercise physiology supervised hydrotherapy, and support worker assistance) is reasonable and necessary in accordance with s 34.
b)whether funding for PBS is reasonable and necessary in accordance with s 34 and should be specified in DRXK’s SOPS.
8. However, in written closing submissions:
a)Ms DRXK raised additional issues under the heading ‘What the Applicant is asking the Tribunal to decide’.[13] Specifically, Ms DRXK requested funding for consumables as per DRXK’s original plan; that funding for supports in DRXK’s SOPS be flexible, not stated; that the Tribunal order the Respondent not conduct plan reviews unless requested by DRXK; and that the Tribunal order the Respondent pay for the progress report submitted on 3 April 2023.[14] In closing submissions, Ms DRXK also raised plan duration as an issue on review.[15] The Respondent addressed each of these additional issues in their closing submissions;[16] and the Tribunal will consider these additional issues on the material before it.
b)The Respondent advised that they no longer press for funding for PBS to be included in DRXK’s SOPS in circumstances where it has not been used by Ms DRXK, Ms DRXK does not want it, and the behaviours of concern appear to have subsided.[17] The Tribunal therefore understands the parties agree no funding for PBS should be specified in DRXK’s SOPS.
[13] ACS, [24].
[14] ACS, [24].
[15] ACS, [24].
[16] Respondent’s Closing Submissions (RCS), [5-10].
[17] RCS, [4.6].
LEGISLATION AND POLICY
Sections 33(1) and 33(2) provide that a participant’s plan must include the participant’s statement of goals and aspirations and SOPS. In deciding whether or not to approve a SOPS under s 33(2), s 33(5) provides that the CEO must:
(a)have regard to the participant’s statement of goals and aspirations; and
(b)have regard to relevant assessments conducted in relation to the participant; and
(c)be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d)apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e)have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f)have regard to the operation and effectiveness of any previous plans of the participant.
10. Section 34(1) provides that:
For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
f)the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i)as part of a universal service obligation; or
(ii)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
11. Under s 209(1) the Minister may make rules prescribing certain matters. Relevant to this application, the Minister has issued the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (Rules), which forms part of the legislation. These are an important part of the legislative scheme.[18] Part 3 of the Rules sets out criteria or considerations that the CEO, or the Tribunal on review, is to use in deciding whether they are satisfied with respect to s 34(1)(c), (d), (e) and (f) of the NDIS Act; Part 5 of the Rules set out general criteria for supports and supports that will not be funded or provided; and Schedule 1 of the Rules sets out considerations relating to whether supports are most appropriately funded through the NDIS.
[18] McGarrigle v National Disability Insurance Agency [2017] FCA 308 at [43].
12. Operational Guidelines published on the NDIS website contain information about what the Respondent considers when making decisions under the legislative framework. These are essentially policy documents. The Operational Guidelines ‘Reasonable and Necessary Supports’ and ‘What principles do we follow to create your plan?’ (Guidelines), most recently updated on 6 October 2023 and 25 September 2023 respectively, are relevant to this application. The Tribunal will take these into account unless there are cogent reasons not to.[19]
[19] Drake and Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409, 420.
EVIDENCE AND SUBMISSIONS
13. The Respondent filed T-Documents on 13 January 2023 under s 37 of the AAT Act; supplementary T-Documents on 27 October 2023; an agreed joint tender bundle on 30 May 2024; and a supplementary joint tender bundle on 7 June 2024. The T-Documents, supplementary T-Documents, agreed joint tender bundle and supplementary agreed joint tender bundle were received into evidence at the commencement of the hearing and marked ‘Exhibit 1’, ‘Exhibit 2’, ‘Exhibit 3’ and ‘Exhibit 4’ respectively. The following documents were also received into evidence at the hearing:
a)Updated statement of lived experience prepared by Ms DRXK dated 5 June 2024 (marked ‘Exhibit 5’)
b)Email from Joey Lim to Ms DRXK and Mr Buckley dated 20 June 2024 (marked ‘Exhibit 6’)
c)DRXK’s NDIS plan for the period 5 May 2023 to 3 November 2023 (marked ‘Exhibit 7’.
d)DRXK’s NDIS plan for the period 4 March 2024 to 4 March 2025 (marked ‘Exhibit 8’)
e)The Council of Autism Service Providers (CASP), ‘Applied Behaviour Analysis Practice Guidelines for the Treatment of Autism Spectrum Disorder: Guidance for Healthcare Funders, Regulatory Bodies, Service Providers, and Consumers’, 3rd Edition, 2024 (marked ‘Exhibit 9’).
f)Email from the Respondent to Ms DRXK and Mr Buckley dated 4 June 2024 (marked ‘Exhibit 10’)
g)Early Start Australia, Service Agreement signed by Mr DRXK on 5 December 2023 (marked ‘Exhibit 11’)
h)Early Start Australia, ESA Goal Setting and Therapy Service Plan for the period 29 April 2024 to 21 July 2024 (marked ‘Exhibit 12’)
Novita, Service Agreement signed by Mr DRXK on 7 July 2023 (marked ‘Exhibit 13’)
j)NDIS, Pricing Arrangements and Price Limits 2023-2024: Pricing Arrangements valid from 1 July 2023 Version: 1.0 (Released 16 June 2023) (marked ‘Exhibit 14’).
14. The hearing was conducted by Microsoft Teams on 11, 12 and 13 June 2024. DRXK was represented by Ms DRXK and Mr Bob Buckley, a disability advocate. Ms DRXK, Ms JL, Ms DD, Dr Erin Leif (Dr Leif), Dr David Pincus (Dr Pincus) and Professor Michael Sandbank (Professor Sandbank) gave oral evidence at the hearing.
15. The Respondent filed a Statement of Facts, Issues and Contentions (Respondent’s SFIC) on 27 March 2024. In the Respondent’s SFIC, only the request for funding for EIBI/ABA was addressed. DRXK’s Statement of Facts, Issues and Contentions (DRXK’s SFIC) was filed on 3 May 2024. At the Tribunal’s request, the Respondent filed a Position on Supports Other than ABA (Respondent’s POS) on 30 May 2024. Both parties elected to provide closing submissions in writing. DRXK’s closing submissions were filed on 8 July 2024. The Respondent’s closing submissions were filed on 24 July 2024. DRXK filed further final closing submissions on 5 August 2024.
16. The Tribunal has considered all of the written evidence and submissions (which exceeds 6000 pages) and the oral evidence referred to at paragraphs [13] to [15]. The overwhelming majority of that material relates to the request for funding for EIBI/ABA.
CONSIDERATION
17. Before proceeding further, it is necessary to note that Ms DRXK has raised several concerns throughout the review process, including in closing submissions, about the Respondent’s conduct during this review. In circumstances where the parties’ conduct during this review does not go to the merits of the review application, the Tribunal will refrain from consideration of that, other than to note the Tribunal’s observation that both parties have approached the review in an adversarial manner; and they have each at times appeared to be focused exclusively on the request for funding for EIBI/ABA, despite there being several supports in issue on review. This has not assisted the Tribunal to make its decision in relation to the proceeding or to fulfill its objective in section 2A of the AAT Act, which is unfortunate.
18. The issues for consideration by the Tribunal are those outlined at paragraphs [7] to [8].
Ms DRXK and Mr DRXK
19. There are numerous documents before the Tribunal that DRXK’s parents, and in particular Ms DRXK, have taken significant time to prepare. Ms DRXK also gave oral evidence at the hearing. That evidence cuts across all of the supports in issue on review and is broadly summarised below.
20. DRXK has substantially reduced functional capacity to participate across a range of settings and needs assistance with all of his activities of daily living.[20] DRXK’s functional capacity is impacted by lack of communication; challenging behaviours; compulsive, restrictive, repetitive and fixation behaviours; absconding behaviour; emotional dysregulation; and high sensory needs.[21] DRXK attends school and hydrotherapy; with no extracurricular activities.[22] Neither OSHC nor vacation care can accommodate DRXK.[23] DRXK requires the assistance of 2 people to go into the community, and it is not always possible for both Mr and Ms DRXK to take DRXK into the community together.[24]
[20] E1, T11, 103; E3, A01, 13, 14.
[21] E3, A01, 13.
[22] E3, A01, 14.
[23] E3, A01, 13.
[24] Transcript, 68 [23-28].
21. DRXK and his family are socially isolated because of DRXK’s disability, in particular his reduced functional capacity and challenging behaviours.[25] DRXK’s family cannot participate in cultural and spiritual activities or attend community events; friends have ceased inviting them to social events; and they cannot take DRXK to a restaurant or manage him whilst shopping.[26] Ms DRXK could not attend her eldest son’s graduation, as DRXK did not manage the transition to the graduation venue.[27]
[25] E1, T11, 103; E3, A01, 13.
[26] E3, A01, 13.
[27] E3, A06, 45.
22. Mr DRXK works full time, long hours and is on-call.[28] He usually arrives home from work between 6:30pm and 8pm.[29] Ms DRXK works as a registered nurse, which involves a 7 day rotating roster that includes early shifts (7am-3:30pm), late shifts (1pm-9:30pm) and night shifts (9pm-7:30am).[30] When Ms DRXK has an early shift at work, Mr DRXK assumes responsibility for DRXK’s morning routine and takes DRXK to school.[31] From July 2021 Ms DRXK reduced her work hours because of DRXK’s significant support needs, however as a result of this the family experienced financial hardship.[32] Ms DRXK has a chronic health condition, which can be exacerbated by stress.[33] She has no time for self-care and misses her own medical appointments.[34] DRXK’s parents struggle every day to meet DRXK’s needs – preparing specific meals, planning the school trip, dealing with transitions, and getting his attention to do a task.[35] They support DRXK whilst juggling daily life, work and study commitments; and they are burnt out.[36]
[28] E3, A01, 14; A06, 43.
[29] E3, A06, 46.
[30] E3, A01, 14; A06, 43, 46.
[31] E3, A06, 46.
[32] E1, T11, 103; E3, A01, 14; A06, 43, 46.
[33] E3, A01, 14; A24, 309.
[34] E3, A06, 43.
[35] E3, A26, 327; Transcript, 63 [34-37].
[36] E3, A06, 46.
23. DRXK’s and his family’s weekly schedule is broadly described as follows:
a)On weekday mornings, Ms DRXK rises at 5:00am to prepare DRXK’s breakfast and lunchbox.[37] This is time consuming due to DRXK’s restricted diet.[38] The breakfasts DRXK will eat take 30 to 45 minutes to prepare, and require use of a blender, the sound of which causes DRXK distress.[39] From 6:00am until 7:45am, a parent supports DRXK to rise, toilet, brush his teeth, shower and dress.[40] This process can cause DRXK to become distressed, and is exhausting for the parent providing direct support.[41] From 7:45am until 8:30am, a parent helps DRXK to eat breakfast.[42] His fine motor skills are such that he cannot break food with his fingers, or with a knife and fork; and he requires constant prompting to remain at or return to the table to eat his breakfast.[43] DRXK travels to school from around 8:30am; getting DRXK though his morning routine and to school is a constant struggle; and transitions between home and school can be very difficult.[44]
b)Between the morning and evening routine on weekdays, DRXK’s day involves school and therapy sessions.[45] From approximately 2:30pm on weekday afternoons, a parent helps DRXK to change out his uniform, shower, and eat afternoon tea.[46] These activities require extensive negotiation.[47] Due to DRXK’s sensory needs, he brings home lots of sand in his shoes and hair, which makes a mess when he undresses.[48] DRXK’s parents cannot use a vacuum to clean-up sand after school, due to DRXK’s sensory sensitivities.[49] Between these afternoon activities and dinnertime, DRXK requires supervision and emotional support whilst he paces, jumps or runs around the house, engages in behaviours such as peeling his skin and lips, and watches his iPad.[50]
c)From 7:00pm until approximately 8:30pm on weekday evenings, a parent helps DRXK to eat dinner.[51] DRXK can use a spoon, however he makes a significant mess when eating, and will sometimes be fed by a parent.[52] As with breakfast, DRXK requires constant prompting to remain at or return to the table to eat dinner.[53] A parent then helps DRXK to prepare for bed, and his bedtime is around 9:00pm.[54] DRXK has sleep disturbances and will sometimes wake for 2 to 2.5 hours during the night; and if he wakes from 4:00am, he will not go back to sleep.[55]
d)DRXK’s morning routine on weekends is not dissimilar to his routine on weekday mornings.[56] He attends a 30 minute hydrotherapy session once a weekend, which a parent takes him to and from.[57] Between his morning routine and 7:00pm, DRXK requires direct help to eat his morning snack, lunch (a process which can easily take 1 hour) and afternoon tea; and supervision and intermittent emotional support at all other times whilst he paces, jumps or runs around the house; engages in behaviours such as peeling his skin and lips; and watches his iPad.[58] DRXK will become dysregulated at times when using his iPad and when denied his iPad, which he consistently requests.[59] From 7:00pm on weekend evenings, DRXK’s routine is essentially the same as it is on weekday evenings.
[37] E3, A06, 45; A27, 329.
[38] E3, A06, 45.
[39] E3, A01, 13; A27, 329.
[40] E3, A02, 16; A27, 329.
[41] E3, A27, 329.
[42] E3, A02, 16; A27, 329.
[43] E3, A27, 329.
[44] E3, A01, 13; A06, 45; A27, 330.
[45] E3, A02, 16.
[46] E3, A27, 331.
[47] E3, A27, 331.
[48] E3, A27, 331.
[49] E3, A27, 331.
[50] E3, A27, 331.
[51] E3, A27, 332.
[52] E3, A27, 332.
[53] E3, A27, 332.
[54] E3, A02, 16; A27, 332.
[55] E3, A06, 44; A27, 332.
[56] E3, A02, 16; A27, 329.
[57] E3, A02, 16; A26, 325; A27, 331.
[58] E3, A27, 330-331.
[59] E3, A27, 330-331.
24. With respect to schooling, DRXK attended a mainstream school (School A) from February 2022 until December 2023.[60] Whilst at School A, the Department of Education provided 2 SSOs to support DRXK’s learning and staff wellbeing.[61] In 2022, DRXK spent a whole year in a separate room to his peers, with limited classroom participation.[62] DRXK gradually increased the time he spent at school, and attended school fulltime from Term 4 2022.[63] In February 2023, School A trialled having DRXK in a classroom with his peers.[64] By 30 March 2023, the challenges experienced by DRXK increased and he was moved back to a room separate from his class.[65] This followed 3 to 4 weeks of having had no therapy.[66] By Term 3 2023 DRXK’s challenging behaviour escalated to such a degree that suspension and take homes were unavoidable; and in Term 4 2023 DRXK only attended a total of 12 hours of school due to his challenging behaviour.[67]
[60] DRXK’s Statement of Facts, Issues and Contentions (ASFIC) [3], [6].
[61] E3, A01, 13.
[62] E3, A01, 13.
[63] E3, A82, 2683; Transcript,
[64] E3, A01, 13; A06, 45; A24, 308.
[65] E3, A06, 46; A82, 2683.
[66] E3, A06, 46.
[67] E3, A65, 2195; A82, 2683.
25. With respect to Term 4 2023, Ms DRXK gave oral evidence that during that period there were 2 suspensions and 2 take homes;[68] and confirmed that in late September 2023 or early October 2023 until 3 November 2023, DRXK and his family were on holiday in India.[69] After the suspensions and take homes in September, and before leaving for India, Ms DRXK lodged a formal complaint with the Department of Education regarding School A’s treatment of DRXK with respect to suspensions and take homes.[70] Ms DRXK’s complaint was not resolved when DRXK returned from India on 3 November 2023, and Ms DRXK decided not to send DRXK back to School A until her complaint was resolved, and there were appropriate supports in place for DRXK.[71] The outcome of that complaint was that School A demonstrated they had provided all of the support they could.[72] DRXK returned to School A in approximately week 7 of Term 4 2023; however after a couple of days DRXK was again sent home.[73]
[68] Transcript, 58, [15-19].
[69] Transcript, 59 [29-43]; 60 [21-37].
[70] Transcript, 57 [22-41]
[71] Transcript, 59 [29-36]; 61 [21-23].
[72] Transcript, 58 [4-7].
[73] Transcript, 59 [36-40].
26. DRXK began attending a new mainstream school (School B) from week 2, Term 1 2024.[74] Initially he attended for 1 hour per day; by May 2024 he was attending for 2.5 hours per day; and from 27 May 2024 he attended for an additional 1 hour and 20 minutes each day.[75] Whilst DRXK will always have challenges, he is doing well within School B; and as at the time of the hearing was attending school until lunchtime each day.[76] School B have provided extensive support to DRXK since February 2024, which includes highly trained staff and a developmental educator.[77] This success has occurred whilst DRXK has been receiving 2 hours of EIBI/ABA each week.[78] However, Ms DRXK gave oral evidence that just because DRXK is improving at school, does not mean he no longer needs help in other areas.[79]
[74] Exhibit 4 (E4), A123, 5382.
[75] E4, A123, 5382; Transcript, 47 [34-35].
[76] Transcript, 47 [36-37]; 62 [21-32].
[77] Transcript, 47 [18-19]; 62 [39-40]; 63 [14-23].
[78] Transcript, 62 [46-47] - 63 [1-3].
[79] Transcript, 63 [26-37].
27. With respect to therapies, DRXK’s family’s lived experience after trying years of speech therapy and occupational therapy is that these interventions do not work for DRXK in isolation.[80] DRXK began accessing EIBI/ABA through ESA from June 2022, and this continued until March 2023, during which time DRXK received on average 10 hours of therapy each week.[81] That support proved vital to DRXK improving his life skills, in particular his ability to communicate with words, socialising skills, and attending to a task with less behaviours; and DRXK was able to participate in his classroom more and progressed to attending school fulltime.[82]
[80] Transcript, 72 [26].
[81] E3, A34, 357.; Transcript, 34 [21-23], [30-35].
[82] E3, A24, 308.
28. DRXK’s maladaptive behaviours and stimming escalated once EIBI/ABA ceased in March 2023.[83] DRXK’s behaviours of concern escalated to such a point that on 27 May 2023 he was prescribed 0.2mg of Risperidone.[84] That was ceased after a 2 week trial as it seemed to worsen DRXK’s behaviours.[85] DRXK was also prescribed Ritalin in approximately June 2023, however it did not help and DRXK had negative side effects.[86] After these 2 medication trials, DR NS suggested nonpharmacological support was the way forward for DRXK.[87]
[83] E3, A24, 308.
[84] E3, A26, 325.
[85] Transcript, 48 [10-30].
[86] Transcript, 48 [38-47] – 49 [1-14]; 49 [22-23].
[87] Transcript, 49 [8-14]; 63 [1-3].
29. As at the time of the hearing, DRXK was having speech therapy and occupational therapy at school; 2 hours of EIBI/ABA each week at home; and monthly psychology.[88] As parents, Mr and Ms DRXK: ‘firmly advocate that funding for evidence based early intervention should be given top priority over any other therapy’; ‘the literature and national autism guidelines do not highlight speech and OT therapies as best practice evidence-based approaches’; and ‘believe that investing in ABA will offer the most beneficial and evidence-supported outcome for … [DRXK’s] development and wellbeing’.[89]
[88] Transcript, 70 [7-33]
[89] E3, A34, 361.
30. With respect to Dr NS’s recommendation in March 2023 that DRXK undergo a cognitive assessment, Ms DRXK gave oral evidence this has not been done and is not something they can afford.[90]
[90] Transcript, 41 [20-45] – 42 [1-10].
AEIOU Foundation
31. DRXK attended the AEIOU Foundation (AEIOU) from July 2021 until 11 February 2022.[91] Each week at AEIOU, DRXK received 1 hour of support from both an occupational therapist and an allied health assistant, variable support from an early childhood teacher and 15 hours of early intervention support.[92] In an AEIOU exit report dated 24 February 2022, prepared by Ms FL an occupational therapist and Ms YK an allied health assistant, it was reported that in the 7 months DRXK received early intensive group intervention at AEIOU, he experienced gains towards several of his NDIS goals, including those which related to his expressive/receptive communication, fine and gross motor skills, cognitive, social skills, self-care and emotional regulation.[93] Ms FL and Ms YK recommended that DRXK continue to receive access to early intensive intervention to engage safely in the community;[94] and that on-going therapeutic support for DRXK as a minimum should include 1 hour each week of speech therapy, occupational therapy and behaviour support, as well as 10 hours of transition support to ensure DRXK will continue to make gains and developments in a variety of settings including home, school and the community.[95]
[91] E1, T6, 56; ASFIC, [3].
[92] E1, T6, 58.
[93] E1, T6, 60-63.
[94] E1, T6, 59.
[95] E1, T6, 63.
Early Start Australia
32. The EIBI/ABA based program for which funding is sought is delivered by Early Start Australia (ESA). In evidence, there is material from Ms DD, Ms HS and Ms JL on ESA letterhead. Ms DD and Ms JL also gave oral evidence at the hearing.
33. Ms DD was DRXK’s Program Supervisor at ESA from June 2022 until November 2023.[96] Ms DD became a Board-Certified Assistant Behaviour Analyst (BCaBA) in 2021, and a Certified Behaviour Analyst (CBA) in October 2023.[97]
[96] Transcript, 76 [25-31].
[97] Transcript, 76, [42-47]; 78 [4-5].
34. In an intake assessment report dated 22 April 2022, Ms DD reported that the results of DRXK’s Verbal Behaviour Milestones Assessment and Placement Program (VB-MAPP) assessment indicate his verbal and behaviour skills are significantly impaired; and that he demonstrates many language, learning and behavioural deficits that need to be targeted intensively.[98] Ms DD opined that due to gaps in consistent and intensive therapeutic interventions, DRXK has shown regression in some primary early learning skills.[99] Ms DD strongly recommended having ‘at least 18-20 hours per week of therapy in line with what evidence suggests is most conducive to continued improvement’.[100] Specifically, Ms DD recommended 20.25 hours per week for 50 weeks of ABA therapy, plus 8 hours for assessments and progress reports.[101] The total cost estimate for the recommended program was $89,555.42.[102]
[98] E1, T8, 76.
[99] E1, T8, 78.
[100] E1, T8, 76.
[101] E1, T8, 78.
[102] E1, T8, 78.
35. In a Therapy Review Report dated March 2023, Ms DD reported that a comparison of DRXK’s VB-MAPP results from April 2022 and March 2023 indicate he made improvements in relation to a range of skills.[103] Ms DD reported that DRXK’s Vineland-3 Assessment (VABS-3) results indicate significant delays in all domains;[104] and his current VB-MAPP results indicate significant impairment in skills which widens the gap between DRXK and his peers.[105] Ms DD recommended an ABA-based program for DRXK that included 19.25 hours of therapy per week for 50 weeks and 8 hours for assessments and progress reports.[106] The total cost estimate for the recommended program was $103,846.42.[107] DRXK’s therapy goals were identified.[108]
[103] E3, A09, 59-66.
[104] E3, A09, 58.
[105] E3, A09, 66.
[106] E3, A09, 58, 74.
[107] E3, A09, 74.
[108] E3, A09, 70.
36. In both the April 2022 assessment report and the March 2023 therapy review report, Ms DD explained why ABA therapy is recommended for DRXK.[109]
[109] E1, T8, 78-79; E3, A09, 70-72.
37. In a letter dated 20 July 2023, Ms DD explained that DRXK began accessing ABA therapy services from ESA in June 2022.[110] Initially, the intensity of services included 8 to 10 hours of therapy per week.[111] Due to funding issues, the therapy intensity was reduced from early 2023 and eventually ceased in March 2023.[112] School sessions (2 hours per week) resumed from May 2023 because of DRXK’s increasingly challenging behaviours within that setting.[113] Ms DD identified progress made by DRXK with respect to therapy goals; and reported that whilst DRXK had previously shown great improvement in relation to instructional control, without intensive intervention and lack of practice to tolerate demands, his ability to cooperate with instructions had reduced.[114] Further, Ms Das stated that due to the significant gap in accessing intensive therapy supports, she had noticed an increase of DRXK’s behaviours of concern.[115] Ms DD recommended that DRXK be funded for the therapy hours she had recommended in her March 2023 report.[116]
[110] E3, A31, 340.
[111] E3, A31, 340.
[112] E3, A31, 340, 344.
[113] E3, A31, 340.
[114] E3, A31, 342-343, 344.
[115] E3, A31, 344-345.
[116] E3, A31, 347.
38. There are also 3 graphs in evidence prepared by Ms DD. Those graphs capture DRXK’s behaviours of concern and track his behaviour between July 2022 and September 2022; and November 2022 and February 2023.[117] The graph which tracks DRXK’s behaviours of concern for the period 11 July 2022 until 29 September 2022 records low to no aggressive behaviour from 21 July 2022.
[117] E3, A21, 305; A22, 306; A23, 307.
39. Ms DD gave oral evidence at the hearing. In cross-examination, Ms DD was referred to the assertion in her April 2022 report that ‘[d]ue to gaps in consistent and intensive therapeutic interventions, [DRXK] has shown a regression in some of the primary early learning skills’; and asked what evidence she had relied on to reach that conclusion, and whether that was her opinion or what was reported to her.[118] Ms DD gave evidence to the effect that consistent with ESA protocols, this would have been informed by information reported to her by DRXK’s family, direct observation of DRXK, and assessments she conducted to identify where DRXK’s skills were at.[119] With respect to the assertion in her 20 July 2023 report that an increase in particular behaviours of concern was due to a significant gap in accessing intensive therapy supports, Ms DD gave evidence that whilst she understood autism regression and that there could be lots of setting events causing regression in people with autism, as an ABA practitioner she relied on available data and information from those around DRXK.[120]
[118] Transcript, 91 [32] - 94 [12].
[119] Transcript, 91 [32] - 94 [12].
[120] Transcript, 101 [1-27].
40. Ms DD conceded in oral evidence that research referred to in her report dated March 2022 was dated;[121] and that when formulating the recommendations in her report dated April 2023, she had not referred to the National guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia published by Autism CRC in 2022 (Guideline).[122] With respect to the current state of academic opinion on the intensity of services, Ms DD gave evidence that in the years when a client begins getting ABA services, research suggests higher intensity has proven to have more empirical gains.[123] Ms DD gave evidence that the BCBA code of ethics by which she abides, aligns with Recommendations 56.3, 56.4 and 56.5 of the Guideline.[124]
[121] Transcript, 80 [45-47] – 81 [1-4]; 98 [4-10].
[122] Transcript, 96 [42].
[123] Transcript, 81 [27-38]; 82 [35-42].
[124] Transcript, 97 [1-12].
41. Ms HS has been DRXK’s program supervisor at ESA since November 2023, and Ms JL is a BCBA and the clinical manager at ESA.[125] Together they provided a report dated 29 January 2024 in response to a briefing letter signed by DRXK’s parents.[126] That briefing letter asked Ms HS and Ms JL to respond to specific questions, and attached several documents filed by both parties in relation to this review.[127]
[125] E3, A83, 2687; A84, 2701; A85, 2703.Transcript, 215 [45-47].
[126] E3, A82, 2682-2685; A83, 2686-2699.
[127] E3, A82, 2682-2685.
42. Ms HS and Ms JL provided the following information in their report dated 29 January 2024:
a)The reports of Ms DD show marked improvements for DRXK following only 8 to 9 months of EIBI therapy.[128] DRXK thrived during the period he was receiving 8 to 10 hours of EIBI therapy per week.[129] The abrupt reduction of sessions in March 2023 was associated with regressions in key areas of communication and cooperation and directly impacted DRXK’s ability to attend school full-time; and as a result, DRXK spent most of Term 4 2023 absent from school due to increased behaviours of concern.[130] Had the positive changes in DRXK’s skill set simply been due to maturation or natural development, you would not expect such sudden and drastic regression when therapy intensity reduced.[131]
b)DRXK has shown the capacity to learn and gain skills with intensive therapy, and it is reasonable to assume further EIBI/ABA would produce further necessary gains to increase his functional capacity and independence.[132] Systematically reducing the 1:1 therapy supports over time is crucial, but this cannot be done until DRXK is empowered with the key skills to be able to learn in his natural learning environments.[133]
c)EIBI therapy does not necessarily represent activities on top of those already in DRXK’s schedule.[134] The ESA team has never seen DRXK too tired to engage with this heavily play-based therapy, and no risk is foreseen if DRXK were to engage in the recommended intensive therapy hours.[135]
d)The hourly rate of EIBI is lower than the overall ‘cheaper’ alternatives, noting that ‘children with ASD need higher intensity of intervention hours to be effective’; EIBI reduces formal support in the future; greater therapy hours are positively related to greater learning outcomes; and intensive ABA leads to reduced costs across the lifespan.[136]
[128] E3, A83, 2689.
[129] E3, A83, 2693.
[130] E3, A83, 2688, 2689, 2693.
[131] E3, A83, 2689.
[132] E3, A83, 2690.
[133] E3, A83, 2690.
[134] E3, A83, 2690.
[135] E3, A83, 2690, 2693.
[136] E3, A83. 2692-2693.
43. Ms HS and Ms JL recommended 19.25 hours of therapy per week over 50 weeks, and 8 hours per annum for assessments and report writing.[137] The total cost estimate for the recommended ABA Program was $113,838.34.
[137] E3, A83, 2696.
44. Ms HS and Ms JL also prepared a VB-MAPP Assessment Report regarding DRXK dated 31 May 2024.[138] They reported that DRXK gained an additional 15 points in the previous 14 months, where therapy services have been reduced to 2 hours per week with a program supervisor.[139] This is a direct contrast to the significant gain of 36.5 between his first and second assessment in the 9 months where he was receiving 8 to 10 hours of intervention from both an allied health assistant and a program supervisor.[140] They reported that DRXK’s rate of progress and skill acquisition appears to be proportional to the number of hours he receives per week; and those goals focused on by therapy are those that see the most progress.[141]They opined there are some significant barriers limiting DRXK’s progress; and he needs ongoing and intensive behavioural supports aiming to reduce those barriers so his engagement with learning can be improved.[142]
[138] E4, A124, 5384-5387; Transcript, 230 [45-46].
[139] E4, A124, 5385.
[140] E4, A124, 5385; Exhibit 6 (E6); Transcript, 219 [13-21].
[141] E4, A124, 5385.
[142] E4, A124, 5385.
45. Ms JL gave oral evidence at the hearing. In oral evidence, Ms JL stated that ESA’s ABA based intervention for DRXK is highly individualised.[143] When asked how DRXK has responded to ABA therapies since they resumed, Ms JL stated there is evidence of DRXK losing certain skills that he previously acquired in therapy;[144] however he is responding well to 2 hours of therapy each week, albeit that therapy goals are hugely reduced.[145] Ms JL gave evidence to the effect that the ESA program is play based and dynamic, and she does not envisage DRXK will have any issues with 14 hours of directly therapy each week.[146]
[143] Transcript, 216 [26-27].
[144] Transcript, 217 [1-15].
[145] Transcript, 217 [18-33].
[146] Transcript, 217 45-47] – 218 [1-16].
46. In cross-examination, Ms JL clarified that the VB-MAPP Milestones Assessment in Appendix 1 to the report prepared by Ms HS and Ms JL dated 31 May 2024 records DRXK’s results over 3 tests which took place in April 2022, March 2023, and May 2024; and that those results, as evidenced by white boxes without notations, do not demonstrate any regression in the sense that DRXK had lost any particular skill when reassessed.[147] Ms JL also gave evidence that there were no VB-MAPP reassessments between March 2023 and May 2024 which could have formally captured DRXK’s loss of skills; but that there was anecdotal evidence including what therapists had observed or therapy data, and reports from parents and school, that evidence a reduction in DRXK’s skills when regular therapy was reduced.[148]
[147] Transcript, 230 [1-35].
[148] Transcript, 228 [34-46] – 229 [1-23]; 245 [1-47] – 246 [1-19].
47. In cross-examination, Ms JL confirmed she understood the effectiveness of intervention hours is a critical issue on review.[149] Ms JL gave evidence that whilst she may not have mentioned recent literature including the ‘umbrella reviews’ in her January 2024 report, that does not mean she was unaware of the most recent research.[150] Ms JL also gave evidence that she was, at the time of her January 2024 report, familiar with the Guideline.[151] It was put to Ms JL in cross-examination that the statement in her January 2024 report, ‘children with ASD need higher intensity of intervention hours to be effective’, seemed inconsistent with Recommendation 56.4 of the Guideline.[152] Ms JL explained that whilst her practices are quite consistent with the Guideline, she does not just simply follow that because as a BCBA she is bound by an ethical code.[153]
[149] Transcript, 231 [4-5].
[150] Transcript, 231 [7-40].
[151] Transcript, 231 [29-34].
[152] Transcript, 233 [22-24].
[153] Transcript, 233 [35-47] – 234 [1-9].
Dr Erin Leif
48. Dr Erin Leif is a BCBA at the doctoral level (BCBA-D), a CBA and holds a Bachelor of Psychology, a Master of ABA and a PhD in Behaviour Analysis.[154] Reports dated 29 January 2024 and 9 February 2024 were obtained from Dr Leif and filed on DRXK’s behalf.
[154] E3, A101, 4383; Transcript, 119 [4-34].
49. Dr Leif reviewed a report prepared by Dr Pincus dated 17 December 2023, and an email and questions prepared by Mr Buckley, before preparing her report dated 29 January 2024.[155] Dr Leif explained what evidence practice is, what EIBI and ABA-based therapy are, and that interventions derived from ABA, including EIBI, are now internationally endorsed as a safe and effective treatment for ASD.[156] Dr Leif reported that In Australia, it has been recommended that between 15 to 25 hours per week of intervention should be provided to a child on the autism spectrum prior to entering school, for at least 1 year.[157] In Dr Leif’s opinion, no single research report is ever going to be able to identify the optimal type and amount of intervention for every child with ASD; and therefore it is important to consider the degree to which clinical decision-making guidelines can be used to help professionals.[158] Trembath et al. (2021) describe Australia’s first evidence-based framework for determining the optimal amount of intervention for children with ASD;[159] they recommend that the evidence-based practice framework be used to assess whether the intervention and the intensity of intervention are plausible, practical, desirable and defensible.[160]
[155] E3, A100, 4360.
[156] E3, A100, 4362, 4368, 4372, 4376.
[157] E3, A100, 4375.
[158] E3, A100, 4376.
[159] E3, A100, 4376.
[160] E3, A100, 4376-4379.
50. In a report dated 9 February 2024, Dr Leif reviewed documentation specific to DRXK and provided responses to questions posed by DRXK’s advocate.[161] Dr Leif opined as follows:
a)DRXK should receive an individualised therapy plan based on evidence-based practices that addresses his specific needs and goals; and therapists need to continuously access and adjust the therapy plan based on DRXK’s unique response to intervention and progress.[162]
b)Based on the information provided, it appears that DRXK has ASD with a co-occurring intellectual disability;[163] however Dr Leif could not comment on the level or severity of this.[164] An additional diagnosis of intellectual disability and ADHD would not make any difference to Dr Leif’s recommendations for DRXK’s early intervention.[165]
c)EIBI is an appropriate therapy approach to help DRXK achieve his NDIS goals.[166] Intensity of therapy is an important component of EIBI as it takes advantage of the brain’s neuroplasticity in young children; allows for more frequent and extended practice of skills; provides opportunities for the consolidation of learning; builds behavioural momentum; aims to maximise progress during the critical development period of early childhood; and allows for the generalisation of skills across different settings and contexts.[167] Further, Dr Leif reported that research suggests the intensity of early intervention is positively correlated with long-term outcomes for children with development delays or ASD.[168]
d)From June 2022 to July 2023, the EIBI support provided was not sufficiently intensive to meet DRXK’s needs; 8 to 10 hours per week can be effective for some children but is below the recommended range of 15 to 25 hours per week.[169] A higher level of intensity of support is generally recommended for children who experience developmental delays in multiple developmental domains.[170] DRXK’s current funding for 2 hours per week of ABA is insufficient to meet DRXK’s clinical needs.[171]
e)Early Start’s March 2023 report shows that DRXK has made progress with EIBI/ABA services.[172]
f)Dr Leif was extremely concerned to read in the letter of instruction that DRXK was attending full time school from Term 4 2022; after supports ceased in early March 2023 the challenges experienced by DRXK increased and by Term 3 2023 had escalated to such a degree that suspension and take homes were unavoidable; in Term 4 2023 DRXK only attended a total of 12 hours of school because of his challenging behaviour.[173] This indicates school staff are not appropriately addressing DRXK’s instructional, communication and interpersonal skills at school.[174]
g)Dr Leif opined that for the next 12 months, DRXK would likely benefit from a comprehensive ABA-based therapy program that addresses his needs in multiple developmental domains.[175]
[161] E3, A109, 4607.
[162] E3, A109, 4608.
[163] E3, A109, 4610.
[164] E3, A109, 4612.
[165] E3, A109, 4612
[166] E3, A109, 4610.
[167] E3, A109, 4611-4612.
[168] E3, A109, 4612.
[169] E3, A109, 4613.
[170] E3, A109, 4613.
[171] E3, A109, 4613.
[172] E3, A109, 4613.
[173] E3, A109, 4613.
[174] E3, A109, 4614.
[175] E3, A109, 4614.
51. Dr Leif gave oral evidence at the hearing. She stated that she was reasonably familiar with the several systematic reviews and meta-analyses of EIBI for children with autism and related conditions; and that in preparing her reports in evidence, relied upon some of the reviews that were conducted in the Australian context over the past 10 years or so for the purpose of informing government about best practice for supporting children with autism.[176] Dr Leif gave oral evidence that whilst those reports and guidelines are a starting point, the importance of individualising the program for each chid based on their unique strengths, goals and needs is the most important aspect for early intervention.[177]
[176] Transcript, 120 [42-46]; 121 [9-18].
[177] Transcript, 121 [18-29].
52. Dr Leif opined that rather than an IQ assessment, the best way to identify what therapies and supports a child is going to benefit from is understanding what therapies and supports that child has participated in and whether the evidence is that those therapies and supports have resulted in a beneficial outcome for that child.[178] A functional assessment that looks at a child’s skill development across multiple development domains is important to pinpoint what will be the most pivotal skill areas to focus on; and then therapy goals need to be selected, a therapy plan developed, and then a set of systematic teaching procedures or behaviour supports strategies identified that directly help the child achieve those goals.[179]
[178] Transcript, 125 [16-31].
[179] Transcript, 123 [16-34]; 142 [32-34].
53. Dr Leif gave evidence that research findings about the optimal intensity of intervention have been mixed; and each child’s response to intervention is going to be different and unique, so we must be cautious about taking findings from a single study and making blanket recommendations about the optimal hours of intervention for any single children.[180] With respect to Recommendations 56.3, 56.4 and 56.5 in the Guideline, Dr Leif agreed in oral evidence that they correctly reflect the current status of the evidence, but cautioned a statement like ‘practitioners should be aware that research evidence does not support the concept that supports delivered in greater amounts consistently lead to better child and family outcomes’ should not be overinterpreted as being the same thing as saying that higher intensity intervention never leads to better outcomes.[181] In cross-examination, Dr Leif stated there is no definitive answer about how much therapy is optimal, and that is a very individualised decision; but in general if a child has higher needs across multiple domains, that is one factor that might lead a clinician to recommend a higher number of hours.[182]
[180] Transcript, 129 [17-28]; 139 [30-34].
[181] Transcript, 138 [34-44].
[182] Transcript, 152 [35-45].
54. To identify the right number of hours of ABA based therapy for a particular child, Dr Leif gave evidence that we need to rely on clinicians who have a relationship with that child and that family and who know what that child’s unique response to the intervention looks like and have the data to back up how is this child progressing with lower intensity interventions versus higher intensity interventions.[183]
[183] Transcript 156 [9-38]; 158 [37-42.
55. In oral evidence Dr Leif stated that on her reading of the reports she had been provided regarding DRXK, it appears he has very slow skill development in some of those foundational skills, like communication, receptive and expressive language, and social and behavioural skills.[184] Dr Leif further stated that there is evidence that DRXK is making improvements and learning new skills from his ABA therapy based program.[185] Dr Leif gave oral evidence to the effect that she could not make a recommendation the intensity of therapy for DRXK, as there are too many factors she does not know, and she does not have a relationship with DRXK and his family.[186]
[184] Transcript, 124 [17-33].
[185] Transcript, 132 [1-5].
[186] Transcript, 155 [24-43].
56. Dr Leif also gave oral evidence that in circumstances where a child has several therapists, she would recommend that team co-develop a therapy plan that specifies goals and measurable objectives in each area, with a clear division of roles and responsibilities, to ensure a consistent and coordinated approach to service delivery, rather than a fragmented approach.[187]
[187] Transcript, 131 [25-44].
Occupational Therapists
57. In a report dated 10 April 2022, Ms GA, an occupational therapist reported that DRXK had been accessing weekly occupational therapy at her clinic since January 2022;[188] and that his fine motor, gross motor and play skills are not developmentally age appropriate.[189] Ms GA recommended weekly occupational therapy and speech therapy for 40 weeks over 12 months to focus on his NDIS goals; and 15 hours per week of ABA therapy to assist in building communication, play, self-help skills, fine and gross motor skills and academic skills.[190]
[188] E1, T7, 65.
[189] E1, T7, 66.
[190] E1, T7, 70-71.
58. There is a paediatric occupational therapy report in evidence dated February 2023 prepared by Ms CT.[191] Ms CT provided occupational therapy support to DRXK from July 2022 until July 2023.[192] Ms CT reported that DRXK’s profile includes cognitive impairments, sensory processing difficulties, speech and language delays, anxiety and challenging behaviours.[193] Because of this, Ms CT opined that a multidisciplinary and collaborative approach across all subsets of DRXK’s function and environments is essential.[194] Ms CT reported that each term, 2 meetings are held with DRXK’s allied health team, school staff and family to liaise on DRXK’s goals and supports required to maintain his progress.[195] These meetings enable a holistic approach and the transferring of successful strategies across disciplines, carers and environments.[196]
[191] E3, A05, 27.
[192] E3, A86, 2710.
[193] E3, A05, 29.
[194] E3, A05, 29.
[195] E3, A05. 30.
[196] E3, A05, 30.
59. With respect to DRXK’s functional performance, Ms CT reported that DRXK’s PEDICAT scores were extremely low for all domains, which demonstrates he is heavily reliant on his parents for all activities of daily living and personal management.[197] Ms CT also reported that Ms DRXK scored 68/100 on the Caregiver Buren Scale which indicates severe burden;[198] and that as at February 2023, Ms DRXK had returned from a 20 hour to a 34 hour work week.[199]
[197] E3, A05, 32-33.
[198] E3, A05, 33.
[199] E3, A05, 33.
60. Ms CT recommended that DRXK receive the following support:
a)118 hours of occupational therapy comprising 2 hours reassessment, 91 hours therapy sessions (52 weekly sessions plus travel capped at 30 minutes, both ways), 5 hours planning of therapy sessions, development of intervention programs, 16 hours collaboration and 4 hours progress report with recommendations;
b)weekly speech and language intervention to provide strategies to family and staff to mitigate behaviours of concern that escalate due to communication breakdowns; and to increase DRXK’s speech and language skills;
c)ongoing intensive intervention both in the home and in school to support with strategies that support DRXK’s motivation and engagement in educational, domestic and leisure tasks;
d)a minimum of 4 hours per week support worker assistance to allow DRXK access to a regular and familiar worker who can build rapport and assist with in home activities such as personal care and play as well as building capacity to go on 1:1 outings within the community.[200]
[200] E3, A05, 39-41.
61. In a letter dated 12 July 2023, Ms CT outlined the functional goals for occupational therapy intervention over a 12 month period, and how she would support DRXK to achieve those goals.[201] Ms CT reported that as at July 2023, DRXK’s supports had ceased, and his family and school had noted a significant regression in progress.[202]
[201] E3, A30, 336-337.
[202] E3, A30, 338.
62. Ms SV has been DRXK’s occupational therapist since July 2023.[203] Ms SV is employed at the same organisation as DRKX’s former occupational therapist, Ms CT.[204] In a letter dated 29 January 2024, Ms SV stated that since Ms CT’s report dated February 2023, her employer now charges $0.97 per kilometre, meaning that the recommendation for occupational therapy now includes an additional amount of $1,513.20.[205]
[203] E3, A86, 2710.
[204] E3, A86. 2710.
[205] E3, A86, 2710.
Speech Pathologists
63. Ms CL is a speech pathologist who worked with DRXK on a weekly basis from August 2021 until approximately mid-2023.[206] Ms CL reported that DRXK has a severe language disorder and presents with severe sensory differences, safety concerns and challenging behaviours;[207] and in all situations he is often unable to participate due to difficult behaviours such as pacing the room, yelling, inattention, repetitive noises and spinning.[208]
[206] E3, A07, 48.
[207] E1, T3, 35; E3, A07, 48, 49.
[208] E3, A07, 49.
64. In an undated letter provided to the Respondent before the internal review decision, Ms CL recommended 20 hours per week of ABA therapy to reduce DRXK’s challenging behaviours, which would enable DRXK and his family to participate in community settings more regularly, begin to transition to working in his designated classroom and begin to form relationships with classmates.[209] In a letter dated 14 March 2023, Ms CL reported that DRXK had begun accessing ABA which had been instrumental in helping him to make progress towards his functional goals.[210]
[209] E1, T3, 35, 37.
[210] E3, A07, 48, 51.
65. As at March 2023, Ms CL opined that DRXK was making great progress with his current level of support.[211] For example, he can now use single words to request, has started using a communication board independently, can follow simple instructions with less avoidance behaviours and can sit at a table for 10 to 20 minutes.[212] Ms CL recommended that DRXK be funded for 1 hour per week of speech therapy, plus travel, 3 hours for report writing and 16 hours for collaboration meetings to enable DRXK to build upon recent advances with his communication.[213] Ms CL opined that without weekly speech therapy, DRXK does not have a way to meaningfully communicate nor the opportunity to learn how to do so.[214] Ms CL also recommended that DRXK be funded for:
a)20 hours per week of ABA therapy, plus travel, report writing and 16 hours for collaboration meetings. This would help DRXK to learn to manage behaviours that are hindering his progress in other areas.
b)1 hour per week of occupational therapy, plus travel, report writing and 16 hours for collaboration meetings. This would help DRXK to learn how to regulate his emotions or body to be in a position to learn or participate meaningfully with his peers and family members.
c)Support worker assistance for 4 hours per week, 4 hours per weekend and 16 hours per week of school holidays.[215] OSHC cannot provide the 1:1 support that DRXK needs. A support worker would safely drop off/pick up DRXK from school and care for him until his parents, who cannot financially sustain working reduced hours and who have no family or community support in Australia, return home from work.
[211] E3, A07, 48.
[212] E3, A07, 48.
[213] E3, A07, 50.
[214] E3, A07, 48-50.
[215] E3, A07, 50-51.
66. Ms CL opined that occupational therapy, speech therapy and ABA services must be provided at school as this is where DRXK spends the most time.[216]
[216] E3, A07, 48.
67. Ms RM began providing weekly speech pathology services to DRXK in July 2023.[217] In a letter dated 20 July 2023, Ms RM stated that DRXK has a severe language disorder associated with ASD and requires weekly speech therapy to develop his language abilities and functional communication.[218] Ms RM planned to deliver support to DRXK at school once rapport was established.[219] Goals for DRXK’s speech therapy include to improve joint attention; to answer ‘yes’ and ‘no’ questions consistently; to communicate his emotions; and to respond to questions and greetings with 1-to-2-word responses.[220]
[217] E3, A32, 348.
[218] E3, A32, 348.
[219] E3, A32, 348.
[220] E3, A32, 348.
DRXK’s school
68. From 2 February 2022 until December 2023, DRXK attended a local mainstream school (School A). There are several documents in evidence from School A, including:
a)A letter from the director of OSHC dated 13 February 2023 confirming that no direct 1:1 funding can be sourced in an OSHC setting;[221]
b)A Behaviour Support Plan dated 30 March 2023 which outlines expectations regarding DRXK’s behaviour, strategies to support DRXK to achieve the desired behaviour, and what learning programs will be used to help reinforce the desired behaviour.[222]
c)One Plan dated 6 June 2023 outlining universal adjustments, which include access to a learning space adjacent to his classroom; SSOs work with DRXK across the day restating and reinforcing visual and verbal instructions and ensuring his and the other students’ wellbeing and safety; and access to gross motor and sensory tools.[223] The One Plan notes that DRXK poses several risk factors.[224]
d)A Notice of Take Home dated 21 June 2023 because DRXK physically pulled at the neck of a staff member’s jumper causing her to be frightened and distressed by partially choking her;[225] and a Notice of Suspension from School dated 27 June 2023 because DRXK grabbed a staff member by the head from behind, and put one hand over her mouth and nose and the other hand on the right hand side of her head and forcefully pulled her head back.[226]
e)An Individual Student Archived Absences report for the period 1 July 2023 until 13 December 2023.[227]
[221] E3, A04, 26.
[222] E3, A12, 84-85.
[223] E3, A25, 321.
[224] E3, A25, 321.
[225] E3, A28, 333.
[226] E3, A29, 334.
[227] E3, A122, 4763.
69. Since 7 February 2024, DRXK has attended a different local mainstream primary school (School B).[228] There is no evidence before the Tribunal from School B.
[228] E3, A121, 4762.
Dr NS, Paediatrician
70. There are letters in evidence dated 21 June 2019, 10 October 2021, 19 August 2022, 17 March 2023 and 21 July 2023 from DRXK’s paediatrician, Dr NS.[229] Dr NS confirms DRXK has ASD Level 3, GDD, severe speech and language disorder, challenging behaviour and safety concerns requiring 1:1, and sleep association disorder.[230]
[229] E3, A08, 53; A33, 350; A99, 4273; A111, 4643; E4, A125, 5388.
[230] E3, A08, 53; A99, 4273.
71. In a letter dated 10 October 2021, Dr NS recommended speech therapy to address speech and language development; communication and social skills; occupational therapy to address development, daily skills, sensory difficulties and play skills; and psychology to assist DRXK’s parents with different strategies to address his emotional needs, social skills and behaviour.[231] In a letter dated 17 March 2023, Dr NS suggested DRXK will require cognitive assessment to better understand and plan for therapy interventions.[232]
[231] E3, A99, 4277.
[232] E3, A08, 53.
72. In a letter dated 21 July 2023, Dr NS noted that DRXK’s disability affected his function in the community, at home and at school; and affected his parent’s mental health.[233] Dr NS also noted that DRXK tried ABA therapy the previous year until March 2023, and showed improvement in that time.[234] Dr NS recommended ongoing ABA intensive therapy as recommended by DRXK’s ABA therapist; as well as occupational therapy, psychology and speech therapy as recommended in relevant reports.[235]
[233] E3, A33, 350.
[234] E3, A33, 350.
[235] E3, A33, 350.
Dr JOB, Registered Psychologist
73. Dr JOB, registered psychologist, prepared progress reports dated 30 April 2022 and 12 January 2023.[236] In the 12 January 2023 report, Dr JOB reported that DRXK’s adaptive functioning had recently been assessed with the Adaptive Behaviour Assessment System, Third Edition (ABAS-III); the results of which suggest DRXK is an individual who presents with significant support needs across multiple domains of functioning.[237]
[236] E1, T10, 94-101; E3, A03, 17-25.
[237] E3, A03, 24.
74. Relevant to the supports that remain in issue on review, Dr JOB recommended:
a)unquantified speech pathology to assist DRXK’s communication and social domain development including speech, language and other communication skills;
b)unquantified occupational therapy to support DRXK’s physical development;
c)20 to 25 hours per week ABA therapy to support DRXK to develop and practice skills for development of his health, safety and self-care;
d)approximately 8 hours funding for clinician attendance at Team Around the Child meetings to support DRXK’s educators and school staff;
e)a support worker for DRXK’s social development for 4 hours per week during school term; 4 hours per weekend and 16 hours per week during school holidays to support community participation.[238]
[238] E3, A03, 25.
Ms SM, Senior Autism Engagement Advisor, Autism SA
75. DRXK was referred to Autism SA’s School Inclusion Program for a functional needs assessment due to his challenges within the educational setting.[239] The functional needs assessment involved observations of DRXK, and discussions with his school principal, deputy school principal, classroom teacher, SSOs and speech pathologist.[240] In a report dated 7 October 2022, Ms SM, a Senior Autism Engagement Advisor, reported that there are concerns regarding DRXK’s ability to socially interact and engage with peers and his teacher; behaviours of concern; and a requirement for additional support in areas of executive functioning skills.[241] Ms SM outlined strategies to support DRXK in his school setting; and recommended a 20 hour block of funded support with an Autism Inclusion Practitioner.[242]
[239] E1, T1A, 7.
[240] E1, T1A, 8.
[241] E1, T1A, 8-9.
[242] E1, T1A, 9-11.
Ms LB, Exercise Physiologist
76. Ms LB is an exercise physiologist who assessed DRXK in July 2022. In a letter dated 22 March 2023, Ms LB reported that since July 2022, DRXK has accessed 1 x 30 minute swim-inclusion session weekly, which focused on developing water safety and drowning prevention, developing gross motor skills and expanding social and communication skills.[243] DRXK did not access 1:1 exercise physiology during that period.[244] Ms LB recommended weekly 1:1 45-minute exercise physiology sessions and explained the benefits of that proposed therapy.[245].[246]
[243] E3, A11, 81-82.
[244] E3, A11, 82.
[245] E3, A11, 82.
[246] E3, A11, 82.
Ms FC, Senior Behaviour Support Practitioner
77. Ms FC, a senior behaviour support practitioner, prepared a report dated 27 April 2022. Ms FC reported that DRXK demonstrates limited functional communication within multiple environments; requires physical assistance with all aspects of personal care; requires 1:1 support during mealtimes; has difficulty regulating his emotions; and will engage in various behaviours of concern.[247]
[247] E1, T9, 83-84.
78. Ms FC recommended funding for Improved Relationships so DRXK can access positive behaviour support; weekly speech to help increase DRXK’s functional capacity in expressive and receptive language; weekly occupational therapy to help increase DRXK’s functional capacity in motor skill development and independence with daily living tasks; and assistance with social and community participation to enable DRXK to achieve his NDIS goal of increasing his independence and enhancing his social skills.[248]
[248] E1, T9, 90.
Dr David Pincus
79. The Respondent obtained a report dated 17 December 2023 from Dr David Pincus (Dr Pincus), consultant paediatrician.[249] Dr Pincus’ report was prepared on the papers. Dr Pincus agreed with the diagnosis of ASD Level 3 and suggested a more appropriate diagnosis for DRXK than GDD, given his age, was moderate intellectual impairment.[250] He also expressed a view that multiple reports suggest DRXK has features consistent with a diagnosis of ADHD, combined type.[251] Dr Pincus opined that DRXK is profoundly affected by his ASD and cognitive impairment.[252]
[249] E3, R33, 5174.
[250] E3, R33, 5176.
[251] E3, R33, 5176.
[252] E3, R33, 5176.
80. Dr Pincus suggested that strong consideration should be given to moving DRXK to a school with more specialised units where he can have his pure education needs provided at an appropriate level and there is more assistance and support for his emotional, communication, socialisation and life skills.[253] Dr Pincus was unclear whether medications had been trialled, but opined he would support such a trial as DRXK would benefit greatly from moderation of his hyperactivity and impulsivity, improvement in focus and his emotional regulation.[254]
[253] E3, R33, 5178.
[254] E3, R33, 5178.
81. With respect to specialised therapy, Dr Pincus stated that weekly occupational therapy, weekly speech therapy and psychology every 2 to 4 weeks should continue.[255] However, Dr Pincus stated that it is often reasonable to alternate between speech and occupational therapists, and then perform more frequent therapies up to weekly when there is a particular milestone being targeted.[256] Dr Pincus recommended psychology support every 2 to 4 weeks.[257] For his physical and mental health, Dr Pincus suggested it is important that DRXK continues to work on his gross motor skills and to get regular exercise; and with respect to this he would support weekly therapy, such as hydrotherapy, physiotherapy or exercise physiology.[258] Dr Pincus also recommended 2 to 4 hours per week of expert assistance with respect to DRXK’s emotions, behaviour and autistic traits and development of living skills.[259] The 2 to 4 hours per week of expert assistance could be provided by ABA therapy or a behaviour therapist.[260] With respect to assistance at home and in the community, Dr Pincus stated that DRXK clearly requires a significant level of care and supervision and appropriate supports at home and in the community are necessary.[261]
[255] E3, R33, 5178.
[256] E3, R33, 5183.
[257] E3, R33, 5183.
[258] E3, R33, 5178, 5183.
[259] E3, R33, 5178.
[260] E3, R33, 5178.
[261] E3, R33, 5178.
82. Dr Pincus gained the impression DRXK has benefited with his behavioural and emotional regulation when receiving regular ABA therapy; and during the period where he did not receive such therapy, his life skills and behaviour deteriorated.[262] Dr Pincus also gained the impression DRXK has benefited from expert and intensive help from speech pathologists, occupational therapists and psychologists, although noted a significant part of his improvement in these areas will have also been attributable to the passage of time and consistent care at home and school.[263]
[262] E3, R33, 5179.
[263] E3, R33, 5179.
83. With respect to ESA as an early childhood intervention support for DRXK, Dr Pincus stated ESA is a well-established service that uses evidence-based approaches and is suitable for assistance with children on the autism spectrum.[264] However, Dr Pincus raised a concern in relation to the general and formulaic content of reports prepared by ESA which are not specific to DRXK and provide unrealistic and false expectations for outcomes in a child with such severe disabilities.[265] He opined that the evidence from the literature and from the lived experience documentation from the family indicate ABA is most beneficial for DRXK with his emotional regulation and availability for learning; and that it assists with his communication, social and self-help skills.[266] Dr Pincus would therefore support DRXK receiving ABA therapy for 2 to 4 hours per week, preferably within a school environment so as to ensure he still has time for relaxation at home.[267]
[264] E3, R33, 5180.
[265] E3, R33, 5180.
[266] E3, R33, 5180.
[267] E3, R33, 5080, 5181.
84. Dr Pincus stated that he does not support the amount of weekly therapy requested on review by DRXK’s family.[268] He opined that for a child who is attending school, and receiving assistance through an occupational therapist, speech therapist, psychologist and exercise physiologist, the requested 20 hours per week of ABA therapy would be an enormous burden for DRXK and likely to exhaust him and interfere with his downtime and social opportunities.[269] Dr Pincus also stated that there is good evidence in the medical literature that the outcomes with 5 hours per week of ABA is similar to that with 20 hours of ABA, and DRXK’s prognosis unfortunately remains poor because of his associated intellectual impairment.[270]
[268] E3, R33, 5182.
[269] E3, R33, 5182.
[270] E3, R33, 5182.
85. Dr Pincus provided a supplementary report dated 15 March 2024.[271] Dr Pincus noted his concern that the ESA report dated January 2024 suggested DRXK exhibited skill regression during 2023 and spent much of Term 4 2023 absent from school because of concerning behaviour.[272] He further noted that the situation with DRXK had deteriorated since his first report, which would slightly alter his recommendations.[273] He opined that DRXK has clearly reached a critical juncture and intervention is necessary.[274]
[271] E3, R41, 5373.
[272] E3, R41, 5375.
[273] E3, R41, 5377.
[274] E3, R41, 5375.
86. With respect to the ESA report dated 29 January 2024, Dr Pincus’ view differed to the authors of that report with respect to the following:
a)In the ESA report, the authors stated that DRXK has shown the capacity to learn and gain skills with intensive therapy, and it is reasonable to assume that further EIBI/ABA would produce further necessary gains to increase his functional capacity and independence.[275] In respect of this, Dr Pincus opined that there is a lack of understanding of DRXK’s significant associated intellectual impairment; and that it is unrealistic to expect him to improve such that he functions the same as his peers.[276]
b)In the ESA report, the authors state that in the year DRXK was receiving 8 to 10 hours of therapy per week across home and school settings, DRXK thrived and showed great engagement and rapport with therapists.[277] Dr Pincus notes this is significantly less than the requested 19.25 hours per week for 50 weeks.[278]
c)In the ESA Report, the authors state that parents’ implementation of interventions is a bonus to any therapy hours, not a replacement of them; and a large majority of DRXK’s therapy hours should be implemented by individuals who have specific formal training.[279] Dr Pincus states that in his experience of looking after children such as DRXK, appropriate strategies to obtain the necessary skill improvements are able to be provided in the educational system within an appropriate school and with appropriate advice from therapists.[280]
[275] E3, A83, 2690.
[276] E3, R41, 5376.
[277] E3, A83, 2693.
[278] E3, R41, 5376.
[279] E3, A83. 2694.
[280] E3, R41, 5376.
87. With respect to Dr Leif’s reports dated 29 February 2024 and 9 February 2024, Dr Leif states that the recommended range of EIBI/ABA therapy, based on medical literature, is 15 to 25 hours per week. Dr Pincus refers to Table 3 from a 2021 paper quoted by Dr Leif.[281] That table summarises multiple meta-analyses and Dr Pincus opines it does not support the dictum that more therapy is better and that 15 to 25 hours is recommended.[282]
[281] E3, R41, 5378-5379.
[282] E3, R41, 5379.
88. Dr Pincus recommended an urgent review by an independent expert such as a paediatrician to consider if DRXK is at the correct school, are there any clear and remediable exacerbating extrinsic factors causing the deterioration, could it be related to an autistic regression, are there any underlying health factors, and is there a role to consider medication for assistance in this situation.[283] If there are no remediable exacerbating extrinsic factors, reversion to the previously successful 8 to 10 hours per week of ABA therapy may be necessary for a period of several months.[284]
[283] E3, R41, 5380.
[284] E3, R41, 5380.
89. Dr Pincus also gave oral evidence at the hearing. He gave evidence that he recommended 2 to 4 hours per week of ABA based therapy for DRXK, which would limit his therapies to 4 to 6 hours per week outside of a full school week, because it is a good appropriate therapy and there had been an apparent response to it.[285] Dr Pincus gave evidence he considered what ABA works best for is rather concrete, mechanical things, like self-care skills; but he does not think it has been proven to be effective for some social and language skills.[286] With respect to those latter skills, Dr Pinus gave evidence to the effect that whilst DRXK may have made progress in relation to his social and language skills, that could be explained by DRKX’s natural progression, or him generally becoming more available for social communication, augmented communication and the like.[287]
[285] Transcript, 174 [1-15].
[286] Transcript, 175 [30-40].
[287] Transcript, 176 [5-19].
90. In cross-examination, Dr Pincus explained that whilst ABA-based therapy may be play based, it does require work and mental energy, and it is tiring for a child.[288] He stated that on his reading of literature on ABA therapy, he was not convinced that amounts above 8 hours are going to be better than below 8 hours, particularly for a 7 year old child who is attending school.[289] Further, with respect to why Dr Pincus would not recommend 14 hours per week of ABA based therapy for DRXK, he noted that Ms DRXK has suggested that 8 to 10 hours in the past, and more recently 2 hours, has been effective and DRXK has achieved a lot.[290] Dr Pincus gave evidence that he expected by the end of the year and into early next year, between speech therapy, occupational therapy and 4 hours for instance of ABA, DRXK will be doing very well.[291]
[288] Transcript, 174 [29-44].
[289] Transcript, 176 [29-39].
[290] Transcript, 176 [40-44].
[291] Transcript, 177 [3-8].
91. In oral evidence, when asked to clarify whether he would recommend weekly or fortnightly speech and occupational therapy for DRXK, Dr Pincus suggested that is a very specific thing for DRXK at this point in time, and he does not have the specific knowledge of DRXK to say that.[292] Dr Pincus gave further oral evidence that he is hopeful that speech and occupational therapy is helpful for DRXK at present and is confident that they will be helpful for him in the future;[293] and he would hope that over the next 6 to 12 months DRXK will obtain some significant specialised, unique assistance through both speech and occupational therapists, as he expects the behaviour and emotional regulation is going to become a lower priority, with social communication and life skills becoming a higher priority.[294]
[292] Transcript, 183 [33-47]; 184 [20-22].
[293] Transcript, 186 [2-3].
[294] Transcript, 186 [8-13].
Professor Micheal Sandbank
92. The Respondent tendered 2 reports prepared by Professor Micheal Sandbank (Professor Sandbank) dated 21 July 2022 and 15 August 2022.[295] Professor Sandbank is an Assistant Professor in the Department of Health Sciences at the University of North Carolina at Chapel Hill.[296] She holds a Ph.D and a Masters in Special Education, and has experience working as a behaviour therapist.[297] Professor Sandbank was also the Lead Investigator of Project AIM (Autism Intervention Meta-analysis), a comprehensive meta-analysis of all group design studies testing nonpharmacological interventions for children on the autism spectrum.[298] The reports prepared by Professor Sandbank in evidence were prepared within the context of a different review application.[299]
157. On the material before it, the Tribunal does not accept that funding weekly 1:1 45-minute exercise physiology sessions over 52 weeks, plus 2 hours non face-to-face time, will achieve any better outcome for DRXK in the short or long term, than funding his continued participation in weekly 30-minute hydrotherapy sessions. Nor does the Tribunal consider the requested intensity is likely to reduce the cost of the funding of supports for DRXK in the long term, or substantially improve his life stage outcomes, any more than his current hydrotherapy schedule. The Tribunal is therefore not satisfied that the requested support, as framed, 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.[405] Accordingly, the Tribunal is not satisfied that the requested support, as framed, is reasonable and necessary.
[405] s 34(1)(c).
158. The Tribunal is however satisfied that 26 hours of exercise physiology supervised hydrotherapy over a 12-month period is reasonable and necessary. This will provide DRXK with weekly 30-minute hydrotherapy sessions over 48 weeks, plus 2 hours for assessment and report writing (Exercise Physiology Support).
159. Based on evidence provided by Ms LB and Dr DP as outlined above, the Tribunal is satisfied that funding the Exercise Physiology Support will assist DRXK to pursue the goals, objectives and aspirations included in his SOPS, particularly those that relate to developing his gross motor skills, and his social and play skills .[406] In circumstances where hydrotherapy will help DRXK to develop his gross motor skills and is the only activity DRXK engages in outside of school and home, the Tribunal is similarly satisfied that the Exercise Physiology Support will assist DRXK to undertake activities, so as to facilitate his social and economic participation.[407] There is no evidence before the Tribunal that the Exercise Physiology Support is more appropriately funded or provided through other services or systems, and the Tribunal is accordingly satisfied that the Exercise Physiology Support is most appropriately funded through the NDIS.[408]
[406] s 34(1)(a).
[407] s 34(1)(b).
[408] s 34(1)(f).
160. The Tribunal has considered whether consulting with a physiotherapist or an exercise physiologist several times a year to review DRXK’s progress and to work with his family on an appropriate plan for the next period of time is a comparable support which would achieve the same outcome at a substantially lower price. The Tribunal does not consider that that model of support would achieve the same outcome as the Exercise Physiology Support given DRXK’s parents’ capacity to implement such a program is likely to be unpredictable due to the already significant and challenging demands on their time, and the significance of DRXK’s impairments. The Tribunal is persuaded by Dr Pincus’ opinion that for his physical and mental health, it is important that DRXK continues to work on his gross motor skills, and that hydrotherapy is a good option for that. This suggests the Exercise Physiology Support will improve DRXK’s life stage outcomes and be of long-term benefit to him. The Tribunal considers that by improving DRXK’s gross motor skills, the Exercise Physiology Support will promote DRXK’s independence and in time will likely reduce the cost of funding DRXK’s support needs into the future. The Tribunal is therefore satisfied that the Exercise Physiology 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.[409]
[409] s 34(1)(c).
161. The Tribunal found Dr Pincus’ support for ongoing hydrotherapy to support DRXK gross motor skill development and physical and mental health, and information provided by Ms LB regarding the projected benefits of exercise physiology supervised hydrotherapy for DRXK, persuasive. Based on that clinical evidence, DRXK’s natural affinity with water, and Ms DRXK’s lived experience that DRXK enjoys and is engaged in his weekly hydrotherapy sessions, the Tribunal is satisfied that the Exercise Physiology Support will be, or is likely to be, effective and beneficial for DRXK, having regard to good practice.[410]
[410] s 34(1)(d).
162. The Tribunal considered Dr Pincus’ recommendation that DRXK be seen by a physiotherapist or exercise physiologist several times a year to review his progress and to work with family on an appropriate plan for the next period of time; and whether by this Dr Pincus intended that DRXK’s family implement the exercise plan as developed. If this was indeed what Dr Pincus had intended, bearing in mind that DRXK’s care needs are substantially greater than those of other children his age that do not live with disability, his parents currently meet the overwhelming majority of those care needs, and the risk of carer burnout, the Tribunal does not consider DRXK’s parents can be reasonably expected to be regularly implementing an exercise program in a water modality within which DRXK is most likely to respond, in addition to all that they are already doing. Accordingly, the Tribunal is satisfied that funding the hydrotherapy support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.[411] Accordingly, the Exercise Physiology Support is reasonable and necessary for the purposes of s 34(1).
[411] s 34(1)(e).
SUPPORT WORKER
163. With respect to support worker assistance, Ms DRXK is requesting that over a 12-month period, DRXK’s SOPS include funding for 400 hours of support worker assistance, comprised of 4 hours each week at the weekday rate, 2 hours each week at the Saturday rate, and 2 hours each week at the Sunday rate, over 50 weeks.[412] Ms DRXK is also seeking funding for associated travel and fuel.[413] The Respondent contends that 182 hours of support worker assistance is reasonable and necessary, which equates to 3.5 hours per week over 52 weeks.[414]
[412] ASFIC, 24, 25; E3, A69, 2278.
[413] ASFIC, 24, 25; E3, A69, 2278.
[414] RPOS, [8].
164. In January 2023, Dr JOB recommended a support worker for DRXK’s social development for 4 hours per week during school term, 4 hours per weekend and 16 hours per week during school holidays to support community participation. In February 2023, Ms CT recommended DRXK be funded for a minimum of 4 hours per week support worker assistance to allow him access to a regular and familiar worker who can build rapport and assist with activities such as personal care and play as well as long term, building capacity to go on 1:1 outings within the community. In March 2023, Ms CL recommended that DRXK be funded for support worker assistance for 4 hours per week, 4 hours per weekend, and 16 hours per week during school holidays. Ms CL suggested a support worker would safely drop off/pick up DRXK from school and care for him until his parents return home from work.
165. The Tribunal broadly accepts the evidence of DRXK’s parents as it relates to the weekly routine for both DRXK and them, as outlined at paragraph [23]. The Tribunal recognises that with DRXK’s transition to School B needing be taken slowly, he is not currently attending school full-time, although the goal is that in time he will. Whilst DRXK is unable to attend full-time school, he is obviously requiring care at home in lieu. The Tribunal accepts that DRXK does not have extended family in Australia, who can help DRXK’s parents to meet his substantial support needs.
166. The evidence from DRXK’s current and former treating professionals, and the lived experience of DRXK’s parents, overwhelming establishes that DRXK’s functional capacity is substantially reduced across all domains; he requires substantial assistance with all activities of daily living and with personal management; and he presents with sensory sensitivities, challenging behaviours, compulsive and repetitive behaviours, and emotional dysregulation. Dr Purvis also opined that DRXK is profoundly impacted by his ASD and cognitive impairment. Based on the evidence provided by DRXK’s parents, School A, DRXK’s current and former treating professionals, and Dr Pincus, the Tribunal accepts that DRXK requires 1:1 support in all settings, and that no direct 1:1 funding can be sourced in an OSHC environment. The Tribunal also accepts DRXK’s parents’ evidence that neither of them can safely support DRXK on their own, to access the community for recreational activities.
DRXK’s parents’ evidence is that in consequence of meeting DRXK’s substantial support needs and juggling those with their work commitments and daily life, they are burnt out. In February 2023, Ms CT reported that Ms DRXK scored 68/100 when she completed the Caregiver Burden Scale on 23 January 2023, indicating ‘severe burden’; and opined that it is critical this is considered when examining DRXK’s support needs. In July 2023, Dr NS reported that DRXK’s disability affects his parents’ mental health. The Tribunal broadly accepts this evidence.
168. What is not clear from the evidence before the Tribunal is the extent to which DRXK’s parents’ competing work demands conflict with each other; the extent to which meeting DRXK’s substantial support needs conflict with the ability of DRXK’s parents to meet their other respective commitments and responsibilities; how DRXK’s existing funding for support worker assistance is currently being utilised; and why DRXK’s existing funding for support worker assistance is insufficient. There is also an absence of objective evidence in relation to the physical and mental health of DRXK’s parents, and how, if at all, that impacts their capacity to meet DRXK’s substantial support needs. In the absence of these particulars, the Tribunal cannot determine with any precision the extent to which DRXK’s parents are struggling or unable to meet DRXK’s substantial support needs, or to facilitate him accessing the community. For this reason, the Tribunal is not satisfied that funding the requested support as framed takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.[415]
[415] s 34(1)(e).
169. Further, Dr JOB, Ms CT and Ms CL do not explain why they recommend funding for a specific number of hours, and it is unclear from their evidence whether they each considered if funding fewer hours would achieve the same outcome at a substantially lower cost. Nor do DRXK’s parents explain in their evidence exactly how they have formulated the quantum of their request for funding for support worker assistance. This, together with the lack of particulars referred to at paragraph [168], is why the Tribunal is also not satisfied that 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.[416]
[416] s 34(1)(c).
170. The Tribunal is however satisfied that 208 hours for Assistance with Self-Care Activities at the Standard Weekday Daytime rate over 12 months is reasonable and necessary (Support Worker Assistance). It will be a matter for DRXK’s parents how and when they utilise this support worker assistance. The Tribunal notes that this funding is flexible, and could therefore be used to help DRXK to access the community, if DRXK’s parents so choose.
171. The Tribunal is satisfied that the Support Worker Assistance will assist DRXK to pursue the goals, objectives and aspirations included in his statement of goals and aspirations, particularly those which relate to achieving greater independence in his activities of daily living.[417] The Tribunal is similarly satisfied that by developing DRXK’s functional capacity and independence through direct support, the Support Worker Assistance will assist him to undertake activities, so as to facilitate his social and economic participation.[418] There is no evidence before the Tribunal that the Support Worker Assistance is more appropriately funded or provided through other services or systems, and the Tribunal is accordingly satisfied that the Support Worker Assistance is most appropriately funded through the NDIS.[419]
[417] s 34(1)(a).
[418] s 34(1)(b).
[419] s 34(1)(f).
172. The Tribunal accepts that there are no comparable supports which would achieve the same outcome at a substantially lower cost. Whilst funding the cost of the Support Worker Assistance is not insignificant, the Tribunal considers it will help DRXK to develop his capacity to undertake activities of daily living, which will promote his independence. Whilst the extent to which this will improve DRXK’s life stage outcomes is difficult to predict, there is no question that fostering DRXK’s independence will be of long-term benefit to him. So too will it be of long-term benefit to DRXK to sustain his informal supports. The Tribunal is therefore satisfied that the Support Worker Assistance 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.[420]
[420] s 34(1)(c).
173. Whilst there is no specific plan in evidence outlining exactly when the support will be utilised and what exact tasks the support worker will complete with DRXK, there is a broad plan that the support worker will supervise DRXK and assist him to complete activities of daily living when he is not at school. The Tribunal accepts that this broad plan will enable DRXK’s parents to utilise the Support Worker Assistance optimally to ensure the benefit of it is maximised for DRXK. The Tribunal considers that Ms CT, as an occupational therapist who had a therapeutic relationship with DRXK over a 12-month period, is appropriately placed to have considered the effectiveness of and need for support worker assistance; and despite her recommendation being directed to a point in the past, the Tribunal accepts that DRXK’s support needs and the family’s circumstances have been relatively consistent over time. For these reasons, the Tribunal is satisfied that the Support Worker Assistance will be, or is likely to be, effective and beneficial for DRXK, having regard to current good practice.[421]
[421] s 34(1)(d).
174. Whilst it is normal for parents to provide substantial care and support for children, the Tribunal has accepted that because of DRXK’s disability, his care needs are substantially greater than those of other children his age. The Tribunal accepts that DRXK’s family do not have extended family in Australia, and that DRXK’s parents must both work to ensure the family’s financial survival. The Tribunal also accepts that the relentless need to assist DRXK with all activities of daily living, together with managing DRXK’s emotional dysregulation and challenging behaviours, inevitably takes a toll on DRXK’s parents, and that Ms DRXK is neglecting her own health to ensure DRXK’s needs are met. The Tribunal considers that the Support Worker Assistance will assist to sustain DRXK’s informal supports, and in doing so will reduce the risk of DRXK’s parents experiencing carer burnout, and the risk to DRXK’s wellbeing that would flow from that. The Tribunal is therefore satisfied that funding the Support Worker Support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.[422] Accordingly, the Support Worker Support is reasonable and necessary for the purposes of s 34(1).
OTHER MATTERS
[422] s 34(1)(e).
Consumables
175. In closing submission, under the heading ‘What the Applicant is asking the Tribunal to decide’, Ms DRXK requested that the Tribunal ‘include a budget for consumables replicating the funding in the original plan’; and refers the Tribunal to p 36 of DRXK’s SFIC and specifically a recommendation made by DRXK’s occupational therapist referred to therein.[423] The recommendation to which Ms DRXK refers is one made by Ms CT in February 2023.[424] Specifically, Ms CT recommended that DRXK’s SOPS include funding for ‘low risk low-cost budget to support OT recommendations for sensory equipment he requires to regulate’.[425] The Respondent in closing submissions suggested they did not understand what is sought and why; and noted this issue was not the subject of evidence or discussion prior to or at the hearing.[426] In response to that submission, Ms DRXK explained that all of DRXK’s SOPS to date have included funding for consumables, and that DRXK’s existing plan includes $700 in the core budget for assistive technology.
[423] ACS, 6 [24].
[424] E3, A05, 41.
[425] E3, A05, 41.
[426] RCS, [8].
176. The Tribunal understands that rather than asking for additional funding, Ms DRXK is asking to have DRXK’s existing funding for assistive technology replicated in any new plan which flows from this decision. In circumstances where the Respondent has made no suggestion during the review that such funding is no longer reasonable and necessary and should not be funded in DRXK’s SOPS, and this was therefore not an issue agitated on review, the Tribunal considers such support, excluding any one-off assistive technology already used, should be replicated pro-rata.
177. However, if the Tribunal is wrong, and what Ms DRXK is asking for is funding for consumables in addition to the $700 for assistive technology included in DRXK’s existing SOPS, then in the absence of any clear particulars regarding what is sought and why, the Tribunal cannot assess whether the support is value for money, or will be, or is likely to be, effective and beneficial for DRXK. Accordingly, the Tribunal finds that the requested support does not meet the requirements in ss 24(1)(c) or 24(1)(d), and therefore it is not reasonable and necessary.
Plan duration
178. The Tribunal has considered submissions made by Ms DRXK and the Respondent regarding the plan duration.[427] The Tribunal considers that the plan which flows from this decision should be for 12 months duration given the significant value of supports to be funded in DRXK’s SOPS, DRXK’s age and his evolving, complex needs.
[427] ACS, 5 [24]; RCS [5]; DRXK’s Final Closing Submissions (AFCS), [101]-[105].
Plan reviews
179. Ms DRXK has asked the Tribunal to order the Respondent not to conduct plan reviews unless requested on DRXK’s behalf.[428] The Respondent submits that DRXK’s plan will remain in effect until it is replaced by another plan, and that the circumstances in which a plan may subsequently be varied or replaced are dealt with in Division 4 of Part 2 of Chapter 3 (ss 47-50). The Respondent further submits that the Tribunal has no power to make the order sought by Ms DRXK.
[428] ACS, 5 [24].
180. The Tribunal agrees with the Respondent’s submission. Sections 47A expressly provides that the CEO may vary the participant’s plan on the CEO’s own initiative, and s 48 provides that the CEO may conduct a reassessment of a participant’s plan at any time on the CEO’s own initiative. The Tribunal cannot make an order contrary to the NDIS Act. In any event, the scope of the Tribunal’s jurisdiction in this matter is limited to reviewing the decision to approve DRXK’s SOPS. For these reasons, it is not within the Tribunal’s jurisdiction to make the order sought by Ms DRXK.
Stated supports
181. The Respondent submits that it is appropriate for DRXK’s plan to expressly state the therapy supports that are found to be reasonable and necessary supports in their corresponding quantities; structuring the plan in this way provides clarity and certainty; if the supports are not stated funding for other capacity building supports may be applied towards ABA therapy, which would be inappropriate because it would result in the expenditure of public money for therapy that exceeds what has been determined to be reasonable and necessary for DRXK.[429] Ms DRXK submits that all funding within DRXK’s SOPS should be flexible, to address DRXK’s changing needs; and that such flexibility is consistent with the choice and control principles of the NDIS Act.[430]
[429] RCS, [7].
[430] ACS, 6 [24].
182. After careful consideration of this issue, the Tribunal considers that funding for occupational therapy and speech therapy in DRXK’s SOPS should be stated supports. The evidence of DRXK’s current and former treating professionals is that those supports are essential for DRXK. Dr Purvis reported that he hoped that over the next 6 to 12 months, DRXK will obtain some significant specialised, unique assistance though both speech and occupational therapists, as he expects the behaviour and emotional regulation is going to become a lower priority, with social communication and life skills becoming a higher priority. The Tribunal gives this significant weight given Dr Pincus’ extensive experience working as a paediatrician with children such as DRXK, who have multidisciplinary teams. The Tribunal has also given weight to DRXK’s parents’ evidence:
‘We firmly advocate that funding for evidence based early intervention should be given top priority over any other therapy …. The literature and national autism guidelines do not highlight speech and OT therapies as best practice or evidence-based approaches. Therefore, we firmly believe that investing in ABA will offer the most beneficial and evidence-supported outcome for my child’s development and wellbeing’.[431]
[431] E3, A34, 361.
183. On the evidence as outlined in paragraph [182], the Tribunal considers it is vital that DRXK has access to speech therapy and occupational therapy over the coming 12 months, and if those supports are not stated it is foreseeable funds included within DRXK’s SOPS for those supports will be applied to EIBI/ABA at an intensity which has been determined is not reasonable and necessary in accordance with s 34(1).
Direction to pay for progress report
184. Ms DRXK has requested that the Tribunal order the Respondent to pay for the progress report she obtained from ESA in March 2023, which she suggests cost $1,551.92.[432] In reply, the Respondent stated they did not understand this request, and in any event, the Tribunal has no power to order the payment of invoices or supports. In response to that, Ms DRXK contended the relevant report was requested by the Respondent; there is an outstanding amount of $1,358.07 for direct services, including report writing and non-face to face services provided by ESA; and if the Tribunal determines that a support was reasonable and necessary in the past, then the Respondent should reimburse the participant any out-of-pocket costs they have incurred to purchase that reasonable and necessary support.[433]
[432] ACS, 6 [24]; ASFIC, [111].
[433] AFCS, [116]-[121].
185. The Tribunal agrees with the Respondent’s submission that the Tribunal has no power to order the payment of invoices and supports. As was observed in Frugtniet and Australian Securities and Investments Commission [2019] HCA 16:
‘The AAT is not at large. It is subject to the same general constraints as the original decision-maker and should ordinarily approach its task as though it were performing the relevant function of the original decision-maker in accordance with the law as it applied to the decision-maker at the time of the original decision.’[434]
[434] Frugtniet v Australian Securities and Investments Commission [2019] HCA 16, [14].
The Tribunal’s power is enlivened by s 103 of the NDIS Act, in combination with s 25 of the AAT Act. In this matter, the reviewable decision is one made under s 33(2) to approve the SOPS in DRXK’s plan. The ambit of that power is strictly limited to that, and as was noted by Deputy President Forgie in XXWC and NDIA [2020] AATA 923 (XXWC):
‘There is nothing in the scope of the decision that must be made or in the matters, to which regard must be had, that deals with payment of supports approved in a SOPS. That means that payment is not a matter within the scope of the Tribunal’s power to review.’[435]
[435] XXWC and NDIA [2020] AATA 923, [124].
187. The Tribunal agrees with the reasoning in XXWC, and finds that it is beyond the scope of the Tribunal’s jurisdiction to order or make a direction compelling the Respondent to reimburse Ms DRXK for the cost incurred in relation to ESA’s report dated 3 April 2023.
188. Separate to the question of jurisdiction, the decision made 18 October 2022, which confirmed the original decision dated 17 June 2022 to approve the SOPS in DRXK’s plan, is before the Tribunal. Ms DRXK submits that it is open to the Tribunal to determine that the sum of $1,551.92 was a reasonable and necessary support for which funding should be specified in DRXK’s plan commencing 17 June 2022. Ms DRXK relies on the Tribunal’s decision in PBZB and National Disability Insurance Agency [2023] AAT 3385, in which the Tribunal stated:
‘Although the Tribunal cannot order reimbursement, as it appears understood and acknowledged by the parties, the Tribunal does have power to determine that a support is reasonable and necessary in any SOPS it has jurisdiction to review, including a past SOPS. Pursuant to s 39 of the Act, the Agency must comply with the SOPS in a plan.’[436]
[436] PBZB and National Disability Insurance Agency [2023] AATA 3385, [37].
189. There is no invoice in evidence for ESA’s report dated March 2023. It is unclear on the evidence before the Tribunal how many hours ESA claim to have spent completing the report in question, why ESA considered that number of hours were required, or whether the amount of $1,551.92 relates exclusively to assessment and report writing, or includes other direct support provided to DRXK. Further, whilst the evidence referred to in this decision has assisted the Tribunal to determine that the ABA Support is reasonable and necessary at this point in time and for the coming 12 months, that status of the evidence as it relates to the relevant point in time is less clear. It is for these reasons that the Tribunal is not satisfied that at the relevant point in time, 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;[437] and the support is therefore not reasonable and necessary.
[437] s 34(1)(c).
190. In any event, even had the Tribunal been satisfied the support was reasonable and necessary and should be specified in DRXK’s past SOPS, the Tribunal would nevertheless be unable to take any additional step to compel the Respondent to facilitate payment of that support as this exceeds the Tribunal’s power within the scope of this review for the reasons already given.
DECISION
191. Pursuant to s 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth) the decision under review is set aside and the matter is remitted to the Respondent for reconsideration in accordance with directions that:
The statement of participant supports specifies that the reasonable and necessary supports include:
1.1Core Support
a) 208 hours of Assistance with Self-Care Activities at the Standard Weekday Daytime rate
1.2Capacity Building Support
a) 48 hours per year of Level 2 support coordination
b) 23 hours per year of psychology
c) 26 hours per year of exercise physiology
d) 70 hours per year of occupational therapy (inclusive of provider travel)
e) 70 hours per year of speech therapy (inclusive of provider travel)
f) funding for ABA based therapy, comprised of:
iii)306 hours at the Therapy Assistant Level 2 rate plus 75 hours for provider travel
iv)40 hours at the Other Professional rate
The supports referred to in paragraphs 1.2(d) and 1.2(e) above are to be stated supports.
The support referred to in paragraph 1.1(a) above replaces the existing funding for support worker assistance.
The support referred to in paragraph 1.2(a) above replaces the existing funding for Support Coordination.
The supports referred to in paragraph 1.2(b), 1.2(c), 1.2(d), 1.2(e) and 1.2(f) above replace the existing funding for Improved Daily Living.
All other supports in the Applicant’s existing statement of participant supports are to be replicated pro-rata from the date on which the supports specified above are included in the Applicant’s statement of participant supports until the reassessment date, excluding:
a) any one-off assistive technology already used; and
b) any funding for Improved Relationships (CB Relationships).
The management of funding for reasonable and necessary supports under the Applicant’s plan is to remain the same as the management of funding for those supports as specified in the Applicant’s current statement of participant supports.
The date by which the Respondent must reassess the Applicant’s plan is to be 12 months after the date on which the supports in paragraph 1 above are included in the Applicant’s statement of participant supports.
I certify that the preceding one hundred and ninety-one (191)
paragraphs are a true copy of the reasons
for the decision herein of Member L Proske
…[sgnd]………………………..
Associate
Dated: 16 September 2024
Date of hearing: 11, 12 and 13 June 2024
Last submission: 5 August 2024
Advocate for the Applicant: Bob Buckley
Autism Aspergers Advocacy Australia (A4)
Counsel for the Respondent: John Bird
Blackburn Chambers
Key Legal Topics
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Administrative Law
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Procedural Fairness
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