VXGN and National Disability Insurance Agency

[2023] AATA 2781

VXGN and National Disability Insurance Agency [2023] AATA 2781 (4 September 2023)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Number(s):2022/0754      

Re:VXGN

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

DECISION

Tribunal:Senior Member Joanne Collins 

Date:4 September 2023

Place:Brisbane

The decision under review is set aside and remitted to the Respondent (‘the Agency’) with the directions that:

·Within 14 days of the date of this decision, the Agency include in the Applicant VXGN’s statement of participant supports the following supports as reasonable and necessary:

o8 hours per week of individual Applied Behaviour Analysis (ABA) therapy;

o4 hours per year for the preparation of a report by an Early Intervention therapist;

o26 hours per year of Level 2 Support Coordination at the applicable NDIS Price Guide rate;

o52 hours per year of occupational therapy to be included as a 'stated support' so that the funding cannot be used flexibly; and

o52 hours per year of speech therapy to be included as a 'stated support' so that the funding cannot be used flexibly.

·     The date by which the Agency must reassess the VXGN’s plan is to be 12 months after the date the date of this decision;

·     All other supports in VXGN’s existing statement of participant supports be replicated pro-rata from the date of this decision until the reassessment date; and

·     The supports for VXGN’s Improved Daily living budget are to be ‘plan managed’.[1]

[1] Section 42(2) National Disability Insurance Scheme Act 2013 (‘NDIS Act‘).

............................[SGD]............................

Senior Member J Collins

Catchwords

NATIONAL DISABILITY INSURANCE SCHEME – Autism - ABA therapy - reasonable and necessary supports – consideration of section 34 National Disability Insurance Scheme Act 2013 (Cth) – current good practice – section 34(1)(d) National Disability Insurance Scheme Act 2013 (Cth) - decision set aside and remitted to the Respondent

Legislation

Administrative Appeals Tribunal Act 1975 (Cth) s2A, s33, s42D

National Disability Insurance Scheme Act 2013 (Cth) s34, s35, s48, s103

National Disability Insurance Scheme (Supports for Participants) Rules 2013

Cases

Re Drake v Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 60

G v Minister for Immigration and Border Protection [2018] FCA 1229

Mulligan v National Disability Insurance Agency [2015] FCA 544

Shi v Migration Agents Registration Authority (2008) 235 CLR 286

National Disability Insurance Agency v WRMF [2020] FCAFC 79

McGarrigle v National Disability Insurance Agency [2017] FCA 308

Secondary Materials

National Disability Operational Guidelines – Early childhood approach

National Guidelines for Best Practice in Early Childhood Intervention Early Years Learning Framework - Developmental Milestones 

REASONS FOR THE DECISION

1. VXGN, a 5-year-old male, is a participant of the National Disability Insurance Scheme (‘the scheme’). He seeks an increase in his existing funding so that he can access an increase in the level of early intervention support which is already funded under the scheme. 

2. The issue before the Tribunal is whether the level of early intervention support sought by VXGN is a ‘reasonable and necessary’ support pursuant to section 34 of the National Disability Insurance Scheme Act 2013 (‘NDIS Act’) and should therefore be included in his statement of participant supports (‘SOPS’) made pursuant to the scheme.

BACKGROUND

1. VXGN became a participant in the scheme on 28 June 2021. At that time the Agency approved a participants plan (the ‘first plan’) with a review date of 26 June 2022.[2]

   [2] Respondent’s Closing Submissions dated 10 February 2023 at [20].

2. The Agency later received new information regarding VXGN’s support needs and exercised their power under section 48 of the NDIS Act to conduct an unscheduled re-assessment of the first plan.[3] On 15 December 2021 the Agency approved a new statement of participant supports (‘SOPS’) with a review date of 15 December 2022 (the ‘December - 2021 SOPS’) which included the following supports:

   [3] T1A.

   ·Improved Life Choices (CB Choice and Control) - $1,485.75

   ·Improved Daily Living (CB Daily Activity) - $28,419.54.[4]

   [4] Section 33(2) NDIS Act; Respondent’s Closing Submissions dated 10 February 2023 at [22].

3. The purpose of VXGN’s funding for ‘Improved Daily Living’ was stated to be for:

   ‘The provision of Early Childhood Intervention supports to work together within the home and community settings, utilising relevant disciplines within a key worker model (which may include psychology and/or physiotherapy rates as per the NDIS Support Catalogue) to support and advise the family in order to meet the participant’s plan goals. To include a progress report prior to plan review on outcomes against the NDIS plan goals and recommendations regarding the participant’s ongoing functional needs.

   Plan managed’[5] (Tribunal emphasis added).

   [5] T1A; Section 103 NDIS Act.

4. VXGN requested an internal review of that decision.[6] In doing so he requested funding for the following supports:

   [6] Section 100(2) NDIS Act.

   ·15 hours per week of home and day care Early Intensive Intervention by a Behaviour Technician;

   ·5 hours per week of clinic-based intervention services by a Behaviour Support Practitioner; and

   ·Support Coordination.

5. On 11 January 2022 the Agency affirmed its original decision to refuse funding for these supports (‘the decision under review’). Refusal was made on the basis the Agency did not consider that these supports:

   ·Would be, or would likely to be effective and beneficial for VXGN, having regard to current good practice pursuant to section 34(1)(d) of the NDIS Act;

   ·Represented value for money pursuant to section 34(1)(c) of the NDIS Act;[7] and

   [7] T1B.

   ·Were best provided by under the scheme pursuant to section 34(1)(c) of the NDIS Act having regard to what is reasonable to expect families, carers, informal networks and the community to provide.[8]

   [8] R1(b); T2.

6. VXGN subsequently applied to the Tribunal for a review of the decision under review on 1 February 2022.[9]

   [9] T1; Section 103(2) NDIS Act.

7. On 21 November 2022 in the context of these proceedings and in order to ensure continued funding for VXGN, the Agency reconsidered VXGN’s December - 2021 SOPS. This reconsideration was possible by the operation of section 42D of the Administrative Appeals Tribunal Act 1975 (Cth) (’AAT Act’). At that time the Agency extended VXGN’s December - 2021 SOPS on a pro-rata basis for a period on seven months, with a review date of 22 June 2022 (the ‘November - 2022 SOPS’). For reasons which are unclear, the plan management of VXGN’s ‘Improved Daily Living’ budget contained in the November – 2022 SOPS was changed from ‘plan managed’ to ‘NDIA managed’.[10]

   [10] Paragraph [5] of these Reasons for the Decision; Section 42(2) NDIS Act.

8. VXGN’s mother ‘S’ subsequently raised with the Agency the change to the plan management in VXGN’s ‘Improved Daily Living’ budget, as provided for in the November – 2022 SOPS.[11]

   [11] Respondent’s Supplementary Statement dated 10 February 2022 at [10].

9. On 1 December 2022 the Agency issued a further SOPS (the ‘December- 2022 SOPS’). The amount of funding in the December - 2022 SOPS was identical to the funding in the November - 2022 SOPS, however the budget for VXGN’s ‘Improved Daily Living’ was re-instated to be ‘plan managed’. The review date of the December – 2022 SOPS was determined as 2 July 2023. 

10. The Agency’s interaction notes recorded that the variation made of the November – 2022 SOPS to the December – 2022 SOPS was pursuant to section 47A of the NDIS Act. Section 47A of the NDIS Act provides as follows:

    Variation of participant's plan on request of participant or CEO's own initiative

    (1)  The CEO may, in writing, vary a participant's plan (except the participant's statement of goals and aspirations) if:

    (a)  the variation:

    (i)  is covered by subsection (1A); or

    (ii)  is a correction of a minor or technical error; and

    (b)  any conditions prescribed by the National Disability Insurance Scheme rules are satisfied.

    Each variation must be prepared with the participant.

    (1A)  For the purposes of subparagraph (1)(a)(i), the following variations of a participant's plan are covered:

    (a)  a variation to the reassessment date of the plan;

    (b)  a variation of the statement of participant supports included in the plan in relation to the management of:

    (i)  the funding for supports under the plan; or

    (ii)  other aspects of the plan;

    (c)  a variation of the statement of participant supports included in the plan if:

11. The December - 2022 SOPS therefore came into existence not as a consequence of the Tribunal’s remittal power under section 42D of the AAT Act, but instead pursuant to the exercise of the Agency’s powers under section 47A of the NDIS Act. Had VXGN’S application to the Tribunal been made on or after to 1 July 2022 this jurisdictional issue would have easily been remedied by the operation of section 103(2)(d) of the NDIS Act with the effect that VXGN’S application to the Tribunal would be for review of the first plan containing the December - 2022 SOPS, as varied.

12. As a further issue, subsequent to the hearing of this application, on 8 February 2023 the Agency conducted a further re-assessment of VXGN’s December – 2022 SOPS. This re-assessment was conducted pursuant to section 48 of the NDIS Act[12] and resulted in the creation of a new plan for VXGN (the ‘second plan’) with a new SOPS pursuant to section 33(2) of the NDIS Act (the ‘February – 2023 SOPS’). 

    [12] Respondent’s Supplementary Statement dated 10 February 2022 at [6].

13. Therefore, on 8 February 2023 pursuant to section 37(3) of the NDIS Act, the first plan (which upon variation included the December - 2022 SOPS) for VXGN ceased to be in effect. The first plan was thereafter replaced by the second plan which contained the February - 2023 SOPS.

14. There has been no internal review of the second plan by the Agency pursuant to section 100(6) of the NDIS Act. The Tribunal therefore does not have the jurisdiction required by operation of section 103 of the NDIS Act to review the February – 2023 SOPS. Likewise, had VXGN’s application to the Tribunal been made on or after 1 July 2022 this further jurisdictional issue would also have easily been remedied by the operation of section 103(2)(e) of the NDIS Act with the effect that VXGN’S application to the Tribunal would include review of the February – 2023 SOPS.

15. In the context of these jurisdictional issues I have had regard to the Tribunal’s objective of providing a mechanism of review in accordance with section 2A of the Administrative Appeals Tribunal Act 1975 (Cth). I have also had regard to the decision of NDIA v Davis [2022] FCA 1002 in which Justice Mortimer (as the Chief Justice then was) explained the nature and purpose of the NDIS act as follows:

    ‘The NDIS Act is beneficial and remedial legislation designed to operate in relatively high-volume decision-making, in a pragmatic context, and in respect of people (and their families and carers) already facing great challenges in their daily lives. The NDIS Act’s construction and operation should not be beset by parsing, technicalities and distinctions which make the legislative scheme more difficult to comprehend and administer, including for first instance decision-makers and the Tribunal on review’.[13]

    [13] At [142].

16. I have therefore decided to determine simply what SOPS should have been funded as reasonable and necessary supports for VXGN and thereafter remit the matter to the Agency with a direction for inclusion of these supports in VXGN’s SOPS.  

17. At the hearing VXGN was not legally represented. His mother S advocated on his behalf with the assistance of Mr Bob Buckley, a representative of Autism Aspergers Advocacy Australia. The Agency was represented by Mr Sproule of Counsel instructed by Ashurst Lawyers.

    ISSUES

    20.The Agency has conceded that the following supports are reasonable and necessary for VXGN:

    ·52 hours/year of occupational therapy

    ·52 hours/year of occupational therapy

    ·26 hours/year of support coordination.[14]

    [14] Respondent’s Supplementary Statement at [17].

18. VXGN seeks (through his parents), funding for the following supports:

    ·An Early Intensive Behaviour Intervention (‘EIBI’) program with Aspire Early Intervention (‘Aspire’). VXGN relies on a recommendation and quotation by Ms Diane Verstappen, dated 21 October 2021. This recommendation relates to funding for 20 hours per week of EIBI for VXGN, in the sum of $108,960.00 detailed as follows:

    o15 hours per week, over twelve months, for a level 2 therapy assistant – home, community and school;

    o5 hours per week for a behavioural support practitioner (the ‘Aspire program’).[15]

    [15] T4.

19. VXGN submits that these supports are ‘evidence based’ and will address his autism[16] and that they are ‘reasonable and necessary’.[17]

20. The Agency does not dispute that early intervention will assist VXGN to pursue his goals and aspirations and assist him to undertake activities that will facilitate his social and economic participation. The Agency disputes however the number of hours of early intervention sought by VXGN on the basis that it considers that an amount of 20 hours per week is not ‘reasonable and necessary’.[18]

    24.The Agency submits that the decision under review should instead include the following supports in VXGN’s plan:

    ·8 hours per week of support at the 'Capacity Building Supports for Early Childhood Interventions – Other Professional' rate of $193.99/hour for early childhood intervention supports;

    ·4 hours per year of report writing at the 'Capacity Building Supports for Early Childhood Interventions – Other Professional' rate of $193.99/hour for early childhood intervention supports;

    ·26 hours per year of Level 2 Support Coordination at the applicable NDIS Price Guide rate;

    ·52 hours per year of occupational therapy to be included as a 'stated support' so that the funding cannot be used flexibly; and

    ·52 hours per year of speech therapy to be included as a 'stated support' so that the funding cannot be used flexibly.[19]

    [16] Applicant’s Closing Submissions at [43]; Transcript page 9 at lines 1-2.

    [17] Section 34 NDIS Act.

    [18] Section 34 NDIS Act.

    [19] Respondent’s Closing Submissions at [302].

21. The Agency further submits that:

    ·Designation of the funds included in VXGN’s plan for speech and occupational therapies as ‘Stated Supports’ is appropriate in order to prevent these funds from being used for other therapies;[20] and

    ·That a review date 12 months from the date of its decision is appropriate.

    [20] Ibid; Sections 33(3), 46(1) NDIS Act.

THE NATIONAL DISABILITY INSURANCE ACT 2013 (CTH)

1. In respect of what constitutes a ‘reasonable and necessary’ support for the purposes of the NDIS Act, section 34 provides as follows:

   Reasonable and necessary supports

   (1)  For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:

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

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

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

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

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

   (f)  the support is most appropriately funded or provided through the NationalDisability 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.

   (2)  The National Disability Insurance Scheme rules may prescribe methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (1)(a) to (f).

2. Section 34(1) is cumulative and therefore all the criteria must be met.

3. The phrase ‘reasonable and necessary’ is not defined in the Act. It is a composite phrase and should be considered as such. In McGarrigle v National Disability Insurance Agency (McGarrigle), Mortimer J stated as follows:

   ‘Whether a support is “reasonable” requires a different assessment to whether a support is “necessary”. Again, it is not necessary in the context of this proceeding to be definitive about the nature and extent of the meaning of the phrase, or its components. It is enough to observe that using the concept of necessity would appear to tie one aspect of the CEO’s assessment to an evaluation of the kinds of factors set out in s 34(1)(a) and (b) and (d). The word “reasonable” would appear to be directed at factors such as those set out in s 34(1)(c) and (f). That is not to say the meaning of each word is exhausted by the factors set out in s 34(1): rather, it is to illustrate the different work that each concept does as an adjective in the phrase “reasonable and necessary supports’.[21]

   [21] [2017] FCA 308 at [19].

4. Section 35 of the Act provides for the making of rules in relation to prescribing reasonable and necessary supports or general supports that will not be funded or provided under the NDIS. The relevant rules in respect of this review are the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (‘the NDIS Rules’).

OPERATIONAL GUIDELINES

1. The Agency issues Operational Guidelines in relation to what are considered ‘reasonable and necessary supports’ in a participant’s plan. There is no power conferred by the Act to make these Operational Guidelines, and they are issued in an exercise of executive power.[22] The Tribunal is therefore not bound by any policy set out in the Agency’s Operational Guidelines. However; in Re Drake and Minister for Immigration and Ethnic Affairs (No 2)[23] the Federal Court held that a Tribunal should take into account relevant government policy which is not inconsistent with the provisions or objects of the legislation. Further guidance for the proposition that the Tribunal is not bound by policy is found in G v Minister for Immigration and Border Protection[24] where Mortimer J held:

   ‘Justice or injustice is not found within a policy. It is found by looking at the overall circumstances of an individual’s case with the principal focus bring on the purpose and context of the statutory power, not the executive policy framed to guide it …”[25]

   [22]  G v Minister for Home Affairs [2019] FCAFC 79 at [18].

   [23] [1979] AATA 179 (1979) 2 ALD 634.

   [24] [2018] FCA 1229.

   [25] Ibid at [171].

2. Accordingly, unless the Operational Guidelines are inconsistent with the provisions or objects of the legislation, they should be considered in a determination of what is a reasonable and necessary support for VXGN.

EVIDENCE ABOUT VXGN

1. The evidence overwhelmingly supports, and it is not disputed, that VXGN has diagnoses of autism spectrum disorder - level 3 (ASD), global development delay and severe speech and language impairments.[26]

   [26] R2(d), Report of Dr Ken Maclean dated 10 November 2022; A12(k), Report of Dr Helen Puusepp-Benazzouz dated 21 August 2022; A12(c), Report of Dr Garg dated 4 March 2021; A12(m), Report of Dr Garg dated 4 October 2022

1. VXGN lives with his parents, his brother aged approximately 14 and his sister aged 3 years. His father has a diagnosis of ASD - level 1 (mild) and his sister has diagnoses of ASD - level 3, global development disorder and severe expressive and restrictive speech delay.

2. The goals included in the VXGN’s plan undersection 33(1) of the NDIS Act are that his parents would like VXGN to:

   ·develop his language and communication skills;

   ·learn to regulate his emotions”;

   ·develop his social skills;

   ·develop his cognitive skills;

   ·develop his self-care skills; and

   ·develop his fine motor skills.[27]

   [27] T9, pages 122-123.

3. In July 2020 Valerie Lim, occupational therapist, assessed VXGN and provided a report. At that time VXGN had been receiving occupational therapy on an approximate fortnightly basis and had achieved some functional improvements. Ms Lim’s recommendation included the continuation of weekly occupational therapy in order to assist VXGN to improve his ability to participate meaningfully and independently in daily activities.[28]

   [28] A12(b).

4. On 26 October 2020 VXGN was assessed by Renee Mapstone, Speech Therapist. Ms Mapstone described VXGN as having a range of difficulties associated with ASD - level 3 which affected his ability to participate meaningfully and independently in daily activities. At that time VXGN was receiving regular speech therapy in her clinic via teletherapy. Ms Mapstone’s recommendation included the continuation of weekly speech therapy sessions of 45 minutes with a mix of day-care and clinic sessions.[29]

   [29] A12(a).

5. VXGN was assessed several times by Dr Nikam, a paediatrician.  In March 2020 Dr Nikam diagnosed VXGN with ASD - level 3, impaired speech with non-verbal communication and rigid repetitive behaviours. Dr Nikam considered it to be ‘reassuring’ that VXGN was linked with the scheme and receiving speech and occupational therapies on a regular basis.[30]

   [30] R1(b); T3.

6. In March 2021, Dr Pankaj Garg, paediatrician, assessed VXGN. Dr Garg’s diagnoses for VXGN included ASD - Level 3 and global developmental delays of at least a ‘moderate level’.  Dr Garg described VXGN’s developmental skills as being of around a 16 to 18 month- age equivalent in all domains except his gross motor skills which he considered to be around a two-to-two-and-a-half-year age equivalent. Dr Garg’s opinion was that VXGN would benefit from ongoing occupational therapy to assist with working on his self-help and self-regulation skills, behaviour management support and Applied Behaviour Analysis therapy (‘ABA therapy’).[31]

   [31] A12(c).

7. On 30 June 2021 VXGN had an ‘intake assessment’ at Aspire Early Intervention (‘Aspire’), undertaken by Ms Dianne Verstappen, Clinical Director of Aspire. Ms Verstappen recommended an initial three month ‘First Steps program’ with Aspire (the ‘First Steps program’). Following completion of the First Steps program, Ms Verstappen recommended the Aspire program, as referred to at [21].[32]

   [32] A12(d).

8. VXGN commenced ABA therapy with Aspire in June 2021 and thereafter completed the First Steps program.[33]

   [33] R2(d).

9. In October 2021, Dr Pankaj Garg assessed VXGN again. At that time VXGN was attending Aspire Early Intervention three days per week. Dr Garg describes VXGN as having made significant progress with early intervention. In his report dated 4 October 2022 Dr Garg strongly encouraged that the ABA program continue for 15-20 hours per week as well as weekly speech therapy and occupational therapy.[34]

   [34] A12(m).

10. In June 2022 VXGN was assessed by Ms Kerry-Anne Sherson, speech pathologist. Ms Sherson’s described VXGN as presenting with ‘severely disordered receptive and expressive language skills’. Ms Sherson assessed VXGN’s expressive language skills as having an age equivalence of one year and five months, in the context of a chronological age of four years and three months. Ms Sherson’s recommendation included weekly speech therapy for VXGN.[35]  

    [35] A12(i).

11. In August 2022 Dr Puusepp-Benazzouz, paediatrician, assessed VXGN. At that time VXGN was receiving two to four hours of EIBI each week with Aspire. Dr Puusepp-Benazzouz’s recommendations included the following:

    ·A minimum of 20 hours per week of intensive behavioural therapy to work on rigidity, sensory issues, social skills, violent behaviours and school readiness.

    ·Weekly speech therapy to work on social skills, communication and language.

    ·Weekly occupational therapy to work on emotional regulation and fine motor skills.[36]

    [36] A12(k).

12. At the time of the hearing VXGN was attending Cub-Bee House Early Learning Centre for four days per week (ten hours per day – 8am to 6pm, Monday to Thursday). VXGN was at home with his mother on Fridays.[37]

    [37] Respondent’s Supplementary Statement at [76]; R2(d) page 5; A12(j).

13. In her evidence VXGN’s mother S referred to ’barriers’ for VXGN that prevent him from attending services including speech therapy and occupational therapy. S’s opinion was that VXGN required an intensive number of hours of early intervention so that these ‘barriers’ can be broken down and VXGN will thereafter be able to access these services.[38] On this basis, S explained that she had chosen in the past to allocate funding under the scheme towards early intervention to the exclusion of these other therapies.[39]

    [38] Transcript page 33 lines 1-5.

    [39] Transcript page 33 lines 23- 30.

14. S referred to improvements in VXGN’s behaviours towards his sister which she attributed directly to the early intervention program provide by Aspire. Examples of these improvements included unexpectedly giving his sister a ‘kiss’ which S described as ‘remarkable’.[40] S also referred to an improvement in VXGN’s ability to follow instructions and commands.[41]  

    [40] Transcript 33 lines 24-44.

    [41] Transcript page 43 lines 15–18.

15. S’s opinion was that early intervention will provide the best long-term outcomes for VXGN and the ‘best chance’ for VXGN to ‘have a different life trajectory …. not reliant on NDIS’.[42]

    [42] Transcript page 60 lines 10-11.

PUBLISHED AND REFERRED LITERATURE

1. The hearing of this matter included the tender of a significant amount of published literature and research review material[43] in respect of early interventions (‘EI’) for children with ASD. I have considered all of this material and accordingly I refer chronologically to what I consider as the relevant material.

   [43] Rule 3.2(a) NDIS Rules.

2. In 2006 a booklet publication titled ‘Early Intervention for Children with Autism Spectrum Disorders: Guidelines for Best Practice’ was authored by Jacqueline Roberts (‘Roberts’) and Margot Prior (‘Prior’), (‘Roberts & Prior - 2006’).[44] This booklet was associated with a report prepared by Roberts and Prior which related to a review to identify the most effective models of practice in early intervention of children with autism spectrum disorders.[45] Relevant to this decision, Roberts & Prior - 2006 provided the following information:

   ‘To be successful EI needs to be extensive and intensive. A minimum of 20 hours a week over two or more years is essential for young children to make major gains’.[46]

   [44] A10, page 12.

   [45] A10, page 25.

   [46] A10, page 15.

3. In 2009 The National Autism Centre initiated ‘phase one’ of a National Standards Project to address the need for evidence-based practice guidelines for children with ASD (‘NAC - 2009’).[47] One of the primary purposes of NAC - 2009 was to ‘to identify the level of research support currently available for a range of educational and behavioural interventions’.[48]

   [47] A11, page 684.

   [48] A10, page 618.

4. NAC - 2009 classified interventions into specific categories which included established treatments, emerging treatments, unestablished treatments and ineffective/harmful treatments. It concluded that comprehensive behavioural treatment (also referred to as Applied Behaviour Analysis (ABA)) was an ‘established treatment’ insofar as there being compelling scientific evidence to show that this treatment demonstrated favourable outcomes for children with ASD. Whilst NAC - 2009 identified ABA therapy as an established treatment for children with ASD, it did not aim to identify or determine ‘the level of intensity required for delivery of these interventions’. In this regard, and in particular, NAC - 2009 stated that ‘the next version of the National Standards Project may provide further analysis in this area’.[49]

   [49] A10, page 646.

5. In 2011 a publication titled ‘A Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders’ by Prior and Roberts (‘Prior & Roberts - 2011’)[50] reviewed the research available as at that time, to identify the most effective models of practice in early intervention for children with ASD. Included in the findings of Prior & Roberts - 2011 was the statement that:

   ‘Behaviourally based interventions, and specifically those that are intensive (often referred to as Applied Behaviour Analysis (ABA) or early intensive behavioural interventions (EIBI), continue to indicate some positive outcomes for some children in a range of areas including cognitive skills, communication and adaptive behaviour’.[51]

   [50] A10, page 25.

   [51] A10, page 193.

6. In 2012 a subsequent booklet publication titled ‘Early Intervention for Children with Autism Spectrum Disorders; Guidelines for Good Practice 2012’ by Prior and Roberts (‘Prior & Roberts - 2012’)[52] provided as follows:

   ‘The amount of intervention is usually described as number of hours of treatment per week. Fifteen to twenty-five hours per week is generally recommended for autism early intervention in research literature (Roberts and Prior 2006) with some programs recommending as much as 40 hours per week’.

   [52] A10, page 341.

7. Prior & Roberts - 2012 however was careful to identify that the quality of an intervention was just as important the quantity. Further that:

   ‘…no one program will suit all children with autism and their families. There are benefits from early, intensive, family-based treatment programs, so long as these are adapted to the child’s pattern of strengths and weaknesses and take into account of family circumstances’.

8. In 2015 the National Autism Centre initiated ‘phase two’ of the National Standards Project (‘NAC - 2015’). The primary goal of NAC – 2015 was to evaluate more recent intervention outcome studies and literature since NAC – 2009.[53] NAC - 2015 identified the following three categories of interventions; ‘established interventions’, ‘emerging interventions’ and ‘unestablished interventions’. NAC - 2015 referred to ‘established interventions’ as a category where ‘sufficient evidence is available to confidently determine that an intervention produces favourable outcomes for individuals on the autism spectrum. That is, these interventions are established as effective’.[54]

   [53] A10, page 687.

   [54] A10, page 708.

9. NAC – 2015 identified ‘Comprehensive Behavioural Treatment for Young Children’ (‘CBTYC’) as an ‘established intervention’ and described CBTYC programs to ‘involve intensive early behavioural interventions that target a range of essential skills which defined or are associated with autism spectrum disorder ……… These interventions are often described as ABA (or applied behaviour analysis), EIBI (or early Intensive behavioural intervention) or behavioural inclusive programs’. NAC - 2015 also provided that CBTYC was an:

   ‘Intensive service delivery (typically 25-40 hours per week for 2-3 years) based on the principles of applied behaviour analysis (ABA)’.[55]

   [55] A10, page 721.

10. In 2016 a publication titled ‘Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to pre-school children, their families and carers’ by Roberts and Katrina Williams  (‘Roberts & Williams - 2016’) was prepared for the Agency ‘to assist with making decisions about the delivery of services to preschool children with autism, and their families and other carers’.[56] Roberts & Williams - 2016 sought to identify evidence-based and evidence–informed good practice for supports provided to children with autism and their families and carers. Roberts & Williams - 2016 provided the following findings:

    [56] A10, page 366.

    ·Supports for children with autism should be evidence‐based and delivered using a family-centred approach that incorporates individual planning;

    ·The specific early intervention program chosen should take into account family preferences and capacity and each child’s strengths and difficulties, age and stage of development;

    ·The aims of support for the child with autism are to improve social communication and minimise behaviours that challenge to enhance learning and participation;

    oEarly intervention or support should start as soon as a diagnosis is made and the family are ready;

    oHaving well‐trained professionals working as teams to support children with autism and their families is needed. Parent or peer training is promoted, as long as it is incorporated to take into account a family‐centred approach;

    oIntervention programs for children with autism should be comprehensive, that is, across all domains of learning with clearly stated replicable process and content;

    oEarly intervention programs for children with autism must be of sufficient intensity and fidelity (i.e. implemented consistently and accurately), and be evaluated to ensure program quality; and

    oChildren who have received a diagnosis of autism should receive 20 hours per week of early intervention that involves interaction with them. In relation to this level of support;

    ·         staff-to-child ratios can vary between 1:1 and 1:3 as determined by the child’s individual program,

    ·         all staff are autism-trained (training and qualifications will vary),

    ·         programs must involve allied health professionals in individual planning, program implementation and review, and

    ·          the support is sufficiently flexible that it can be adapted and modified in line with the child and parents’ strengths and needs.

11. Notably, the recommendation of 20 hours per week of early intervention in Roberts & Williams - 2016 was based on a ‘midpoint’ evaluation of the programs that were evaluated, which indicated that between 15 and 25 hours per week was most commonly effective.

12. In 2020 Autism CRC published a research report titled ‘Interventions for children on the autism spectrum: - A synthesis of research evidence’ (‘Autism CRC - 2020’).[57] Notably, Roberts co-authored this research report. Autism CRC – 2020 reviewed the scientific evidence for the therapeutic (and other) effects of interventions for children on the autism spectrum. The findings included the following:

    ·Minimal information was reported on the influence of the amount of intervention (e.g., total hours) on intervention effects;

    ·Within the behavioural intervention category, there was evidence that a greater amount of intervention related to greater intervention effects. However, this effect on child outcomes varied between systematic reviews, and null effects were also reported;

    ·Intervention amount did not influence the effect of interventions targeting social-communication and communication outcomes; and

    ·No evidence was reported on the amount of intervention that may maximise effects on child and family outcomes for any intervention category (Tribunal emphasis added).[58]

    [57] R10.

    [58] R10. pages 13-14.

13. In 2021, a Rogers et al research report titled ’A Multisite Randomized Controlled Trial Comparing the Effects of Intervention Intensity and Intervention Style on Outcomes for Young Children with Autism’ (‘Rogers – 2021’)[59] tested the effect of two levels of treatment intensity (by reference to the number of hours) and two treatment ‘styles’ on the progress of your children with autism. The findings of Rogers - 2021 concluded:

    ‘Neither treatment style nor intensity had overall effects on child outcomes in the 4 domains examined. Initial severity did not predict better response to 1 intervention style than to another. We found very limited evidence that initial severity predicted better response to 25 vs 15 hours per week of intervention in the domains studied’.

    [59] R7, page 2063.

14. In 2021 a report by David Trembath et al, titled ‘An evidence-based framework for determining optimal amount of intervention for autistic children’ (‘Trembath - 2021’) considered the optimal amount of non-pharmaceutical interventions for children aged up to 12 years with ASD. This included an investigation of the association between the intervention amount and the effects on outcomes. Relevantly, Trembath - 2021 states:

    ‘These findings highlight a limited and fragmented evidence base linking intervention amount and intervention effects for autistic children. The insufficient evidence exacerbates the already complex challenge of making clinical recommendations for children who differ greatly in their individual learning profiles’.[60]

    [60] R7, page 2180.

15. In 2022 the Lancet Commission on the future of care and clinical research in autism by Lord et al stated as follows:

    ‘If evidence-based approaches to support the lives of autistic children, adolescents, and adults who are living now are to be developed (in contrast to the fervent hopes for neurobiological approaches in the future), knowing what works for whom, when, and at what intensity is imperative, and will allow the design of systems that are cost-effective, affordable, and scalable across the globe. Such approaches are not possible on the basis of the currently existing data, but, might become possible in the future.

    …………….

    Intensity and duration

    Knowledge about how much and for how long a given intervention should be delivered is scarce, and few systematic comparisons have been done to date. A recent study by Rogers and colleagues, done across three different sites, compared two types of intervention (applied behavior analysis and Early Start Denver Model) at two different, relatively high intensities (12 h per week vs 20 h per week) for 2-year-olds with autism. There was no difference in outcome according to either treatment type or treatment intensity on autism manifestations, although greater improvement was found at one of the three sites with greater intensity. This finding is a start; the next step would be to determine if regular, relatively intense, face-to-face interventions of this kind have effects different from those of typical clinic visits or low-intensity, parent-mediated interventions that occur even less frequently’’[61] (Tribunal emphasis added).

    [61] R9(b), page 19 and page 51.

2022 AUTISM CRC DRAFT GUIDELINES

1. In July 2022 Autism CRC issued the ‘National guidelines for supporting the learning, participation, and wellbeing of autistic children and their families in Australia (Draft Guideline for public consultation) (‘2022 Autism CRC draft guidelines’)’.[62] The 2022 Autism CRC draft guidelines were developed within an evidence-based practice framework and were informed by the best available research evidence, evidence from clinical practice and the preferences and priorities of children and their families.

   [62] R7, page 389.

2. The objective of the 2022 Autism CRC draft guidelines was to provide practitioners with an evidence-based practice framework facilitating the safe and effective provision of support to children aged 12 years or younger with ASD.[63] 84 recommendations were made, and relevant to this decision was ‘Recommendation 56’ which provided as follows:

   ‘Practitioners should deliver supports in an amount and duration that is likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

   Good Practice Points

   56.1 The amount and duration of support provision should be tailored to the individual needs of the child and family. The includes consideration of the frequency, length and time of day of support sessions, and variations in support needs over time.

   56.2 Practitioners should inform parents that there is no set number of hours per week of practitioner delivered supports that leads to the best outcomes for all children.

   56.3 Practitioners should be aware that research evidence does not support the concept that supports delivered in greater amounts consistently leads to better child and family outcomes’ (Tribunal emphasis added).

   [63] R7, page 416. 

NDIS OPERATIONAL GUIDELINES – Early childhood approach (‘NDIS guidelines’)

1. Relevant to this decision the NDIS Guidelines[64] state that children and their families will benefit the most from early intervention when:

   ‘Early childhood professionals have qualifications and experience in early childhood development, and offer services based on sound evidence and research’ (Tribunal emphasis added).

   [64] R7, page 185.

EARLY CHILDHOOD INTERVENTION GUIDELINES (‘ECIA Guidelines’)

1. The ECIA Guidelines[65] were developed in 2015 by Early Childhood Intervention Australia as a guide for best practice in childhood early intervention. Their purpose was to establish a framework for universal and equitable high-quality early child interventions, based on best practice for children with disability and/or developmental delay, irrespective of whether they attend government, non-government, large, small, sole non-for-profit service providers or private providers, anywhere in Australia.

   [65] R7, page 347.

2. The ECIA guidelines identify a number of ‘key practices’ in early childhood intervention, one of which is ‘Evidence-Based Practice’. Relevant to this decision the ECIA guidelines provide as follows:

   Evidence-Based Practice

   ‘Evidence-based practice is a decision-making process that integrates the best available research evidence with family and professional wisdom’ (Buysse and Wesley, 2006). In other words, evidence-based practice involves a balance of empirically supported interventions, clinical expertise or practice wisdom, and client or family values, preferences and circumstances (CCCH, 2014).

   To ensure that they are working from a base of evidence informed by the latest research and practice, ECI practitioners should maintain knowledge and skills through lifelong continuing professional development. ECI also requires ongoing review and monitoring to ensure that practices are achieving the desired outcomes.

   ECI practitioners become more effective through critical reflection and a strong culture of professional enquiry (DEECD, 2011). Ongoing self-reflection, self-assessment and monitoring of practices are at the centre of the proposed development of practice standards’.[66]

   [66] R7, page 364.

EVIDENCE OF DR MICHEAL SANDBANK

1. Dr Micheal Sandbank is an Assistant Professor at the Department of Occupational Science & Occupational Therapy, School of Medicine at the University of North Carolina in the USA. Two reports by Dr Sandbank were tendered on behalf of the Agency for consideration by the Tribunal.[67]

   [67]  R7, page 1833; R9(b).

2. In 2017 Dr Sandbank led the research investigation ‘Project AIM’ (Autism Intervention Meta-analysis). Project AIM involved a comprehensive meta-analysis of all available ‘studies’ in respect of children (up to age eight) with ASD and tested the effect of non-pharmacological interventions on any outcome for these children.

3. Project AIM was selected as one of the Top 20 Advances in Autism Research in 2020 by the Interagency Autism Coordinating Committee of the US Department of Health & Human Services.

4. In November 2021, Project AIM updated its investigation by identifying and analysing any further ‘studies’ undertaken subsequent to 2017.

5. As the lead researcher of Project AIM Dr Sandbank has read and analysed the full set of available experimental or quasi-experimental group studies in respect of early non-pharmacological interventions for children with ASD, published before November 2021. In addition, and prior to providing her report to the Tribunal, Dr Sandbank conducted a further search for any relevant studies published after November 2021 and prior to the hearing.

6. The purpose of meta-analyses is to provide a quantitative summary of the entire set of the available research studies on interventions for children with ASD. This includes providing an estimation on whether an intervention is effective for improving an outcome for a child with ASD, and also how effective the intervention actually is.[68]

   [68] R7, page 1843 at [22].

7. Dr Sandbank’s evidence was informative and persuasive. At time of the hearing Dr Sandbank had read and analysed all available experimental or quasi-experimental group studies in respect of early interventions for children with ASD. This amount represented a total of approximately 289 studies, and included all studies tendered for consideration by the Tribunal. Dr Sandbank referred to a wide variety of methodological approaches by researchers over the years in their efforts to determine what interventions are of most benefit to children with ASD. In doing so, Dr Sandbank identified substantial flaws in the methodology of many of these studies, thereby limiting confidence in the respective findings.

8. Dr Sandbank explained that quasi-experimental design studies (‘QED’s) provide ‘unreliable estimates’ for a number of reasons. These reasons include selection bias and the limited sample size of participants. By comparison, Randomised Controlled Trials (‘RCT’s) are considered by the medical and scientific community as the ‘gold standard method for establishing evidence of intervention effectiveness’ for children with ASD.[69]

   [69] R7, page 1839 at [14].

9. Dr Sandbank identified Rogers - 2021 as the most recent and relevant RCT in respect of EIBI and the particular question as to whether increasing intervention intensity offered an increased benefit for a child with ASD.[70]

   [70] R7, MS 19.

10. Dr Sandbank referred to Rogers - 2021 as ‘a high-quality study designed to reliably test questions about the relative effectiveness of competing intervention approaches at different intensities’.[71] Dr Sandbank explained that Rogers - 2021 compared both Naturalistic Developmental Behavioural Interventions (‘NDBI’) and EIBI, at levels of 15 and 25 hours per week and made the following findings:

    ·Both types of interventions (NDBI and EIBI) exhibited significant gains over two years on all measured outcomes.

    ·The developmental progress for the children was similar regardless of whether they received NDBI or EIBI and regardless of whether they received 15 or 25 hours support per week.

    ·Children with initially higher cognitive scores and lower autism symptomology benefited more from higher intensity interventions, but this improvement was only in relation to their autism-related symptoms and spontaneous communication.  It was not in relation to their language or their non-verbal cognitive or adaptive ability.

    ·Children with more significant cognitive and autism-related challenges exhibited similar developmental progress regardless of whether they received 15 or 25 hours per week of intervention[72] (Tribunal emphasis added).

    [71] R7, page 1841 at [18].

    [72] R7, page 1842 at [19].

11. Dr Sandbank identified Rogers - 2021 as being selected as one of the Top 20 Advances in Autism Research by the IACC of the U.S. Department of Health & Human Services. She summarised the findings of Rogers - 2021 as follows:

    ‘The results indicated that, although all groups of participants exhibited significant gains over 2 years on all measured outcomes, there was no effect of either intervention approach or intensity. In other words, children exhibited markedly similar developmental progress over the course of the study, regardless of whether they received NDBI or EIBI supports, and regardless of whether they received those supports for 15 or 25 hours per week’.[73]

    [73] R7, page 1841 at [18].

12. Relevant to this decision, when asked specifically her opinion on whether ‘20+ hours per week of early childhood intervention supports for children with ASD is more effective than less intensive supports (for example 5 to 15 hours per week)’ Dr Sandbank stated:

    ‘It is my opinion that, when considered in total, the available clinical research is

    mixed in both quality and conclusions, and does not satisfactorily establish that

    more intensive supports are unilaterally more effective than less intensive

    supports. Specifically, it does not establish that 20+ hours per week of early

    childhood intervention is unilaterally more effective than less intensive supports,

    such as 5 and 15 hours per week….’[74]

    [74] R7, page 1834 at [4].

13. Dr Sandbank identified that her opinion broadly aligned with the recommendations contained in the 2022 Autism CRC draft guidelines as referred to at [53].

14. In her second report. Dr Sandbank was requested to specifically consider Roberts & Prior - 2006, Prior & Roberts - 2011, Prior & Roberts - 2012, Larsson 2013, Roberts & Williams - 2016 and various other publications.[75] Following review, Dr Sandbank’s opinion remained unchanged for the following three reasons; these reviews were either subject to design flaws, related to research which was impertinent to the question of intensity of intervention and likely outcome, or they were dated.[76]

    [75] R9(b).

    [76] R9(b), page 3 at [4].

15. In relation to the reviews considered ‘dated’ Dr Sandbank stated;

    ‘Many of these evidence reviews were of reasonably good quality and their conclusions were consistent with the evidence available at the time’, notwithstanding, ‘the pace of publication and discovery in early childhood autism intervention science is such that these reviews now describe only a fraction of available research’.[77]

    [77] R9(b), page 5 at [9].

16. Relevantly, Dr Sandbank drew the Tribunal’s attention to the following:

    ·Her opinion was informed by some 289 reports;

    ·Only 17 of these 289 reports had been published as of 2006;

    ·Only 73 of these 289 reports had been published as of 2012; and

    ·Roberts & Williams – 2016 was a ‘review of reviews’ and was informed by studies published during or before 2012.[78]    

    [78] Ibid.

17. Dr Sandbank referenced her opinion to the Autism CRC - 2020[79] report which reported there to be no evidence on the specific amount of intervention that may maximise the effect on the outcomes for a child or their family.[80] Also to the Trembath - 2021 report[81] which highlighted ‘a limited and fragmented evidence base linking intervention dosage and intervention effects’.

    [79] R7, page 14 (referred to by Dr Sandbank as Autism CRC 2021).

    [80] R7, Paragraph 29; R10, Page 14.

    [81] Ibid.

Evidence of Ms Dianne Verstappen

85.Ms Verstappen is the founder and Clinical Director of ‘Aspire’.[82] On 30 June 2021, she assessed VXGN at his home in the presence of his mother, with his father present via zoom. At that time, Ms Verstappen referred to the following deficits:

[82] Transcript page 155 lines 11-13.

·language delay

·difficulty relinquishing preferred toys

·difficulty participating in adult led activities

·inflexibility when things do not go his way

·preference for his environment to be very specific

·difficulty in transitioning without a lot of scaffolding

·limited scope and variety of interests and play skills having regard to his age.[83]

[83] A12(d).

86.In explaining to VXGN’s parents the intervention program offered by Aspire, Ms Verstappen’s report referred to Applied Behaviour Analysis Therapy (‘ABA Therapy’) as follows: 

‘………a discipline concerned with the application of behavioural science in real world settings such as clinics, schools, and industry with the aim of improving socially important issues such as behaviour problems and learning…’[84]

[84] Ibid.

87.Ms Verstappen referred to the categorisation of ABA interventions as either ‘Comprehensive ABA’ or ‘Focused ABA’ which she explained as follows:

·Comprehensive ABA interventions are aimed at producing changes in specific skills that impact global measures of functioning including IQ, adaptive skills and social functioning in children with autism.

·Focused ABA interventions are generally more time-limited in nature because they are designed to address specific behaviour deceleration concerns including aggression, self-injury, disruptive behaviour, pica and other challenging behaviours.[85]

[85] Ibid.

1. Ms Verstappen explained that when Comprehensive ABA Interventions are utilised with younger children they are often referred to as ‘Early Intensive Behaviour Interventions’ (‘EIBI’).[86]

   [86] Ibid.

2. In support of her recommendation for 20 hours per week of EIBI with Aspire, Ms Verstappen referenced research, meta-analysis, systemic evaluation reviews and references by various professional organisations and governments (including internationally) in relation to the merits of ABA.[87] Ms Verstappen stated:

   [87] Ibid.

   ‘Several research studies have demonstrated that centre-based comprehensive ABA interventions are highly effective in improving IQ adaptive skills, and social functioning when programming is delivered 25-40 hours per week’.[88]

   [88] Ibid.

3. On 21 October 2021 Ms Verstappen provided a ‘Developmental Assessment Summary Report’ in respect of VXGN’s skillset at that time.[89] In her assessment she concluded that VXGN had made significant progress during a short trial of ABA therapy, notwithstanding he still exhibited significant skill deficits across all domains. Ms Verstappen confirmed her previous recommendation in respect of the Aspire program and stated:

   [89] A12(e).

   ‘Without intensive intervention to address these skill deficits, VXGN is likely to continue to fall behind his peers and ultimately require lifelong funding to continually address these needs’.[90]

   [90] Ibid.

4. In oral evidence Ms Verstappen referred to her experience of 30 years working with children and also managing a clinic for children, predominately with autism for the past 16 years. Ms Verstappen’s professional qualifications include Bachelor of Education, Bachelor of Physiotherapy, Masters of Linguistics and Board-Certified Behaviour Analyst (BCBA).[91]

   [91] Transcript page 137 lines 37–44.

5. Ms Verstappen gave evidence that VXGN’s program of ABA therapy was predominately based around reducing his barriers to learning. She identified these barriers as aggressive behaviours, tantrums and VXGN’s inability to self-regulate.[92]

   [92] Transcript page 140 lines 44-46.

6. Ms Verstappen’s recommendation for the Aspire program for VXGN relied upon Roberts & Prior - 2006 as a ‘guideline’[93] together with her ‘clinical experience’. She stated;

   [93] Transcript page 148 lines 26-27.

   ‘So the research suggests that the more intensive intervention, the more early the intervention occurs, the better it is for long term outcomes’.[94]

   [94] Transcript page 148 lines 29-30.

7. When clarification was sought under cross examination, Ms Verstappen confirmed that an intensive intervention ‘is no less than 20 hours per week’.[95] To further support her recommendation Ms Verstappen referred also to Roberts & Williams - 2016 which she identified recommended 15 to 25 hours per week of autism-specific intervention.[96]

   [95] Transcript page 170 line 29.

   [96] Transcript page 149 lines 23-24.

8. Ms Verstappen conceded in cross-examination that her recommendation did not reference any research literature subsequent to Roberts - Williams 2016. She also acknowledged that she was ‘probably aware’ of research after 2016, however that she had not updated her ‘template’ at the time of providing her recommendation to VXGN’s parents.[97] Ms Verstappen further acknowledged that at the time of providing her recommendation to VXGN parents she was aware of the Autism CRC – 2020 report but not aware of the research by Dr Sandbank.[98]

   [97] Transcript page 159 lines 4–8.

   [98] Transcript page 159 lines 11-28.

9. In cross-examination it was put to Ms Verstappen that the research by Dr Sandbank provided findings which did not support her argument in respect of the intensity of EIBI recommended by her for VXGN. Ms Verstappen stated ‘you can suggest that. I am not sure’.[99]

   [99] Transcript page 159 lines 30–32.

10. Ms Verstappen indicated that subsequent to providing her recommendation to VXGN’s parents she had read Autism CRC - 2020. She also indicated that she was now aware of Dr Sandbank’s meta-analysis although that she had not read it in depth.[100]

    [100] Transcript page 159 lines 25–38.

11. When an intensity of 8 hours per week of EIBI for VXGN was suggested to Ms Verstappen, her opinion was that this intensity was not sufficient to work on all of VXGN’s developmental domains and impairments.[101]

    [101] Transcript page 152 lines 21-24.

12. Ms Verstappen’s evidence was that the Aspire program of the intensity proposed by her recommendation would ‘unequivocally’ change the life trajectory for VXGN.[102] Further that, a ‘more intensive intervention would give him a better opportunity for more progress across all developmental domains’.[103]

    [102] Transcript page 154 lines 17–19.

    [103] Transcript page 178 lines 45 to 47.

13. Ms Verstappen identified examples of VXGN’s progress to date. She explained that when she first met VXGN at the intake assessment he would not engage with her and exhibited significant behavioural problems. Since commencing ABA therapy she has noted a reduction in VXGN’s problem behaviours, notwithstanding Aspire are ‘still managing’ VXGN’s ‘problem behaviour’ in an endeavour to prepare VXGN to be able to attend a mainstream setting in a pre-school.[104]

    [104] Transcript page 153 lines 18-19; 31- 32.

14. Ms Verstappen explained that the process of providing a recommendation to the Agency required the nomination a specific number of hours. Her nomination of number of hours was based on an ‘informed guess’ made at the intake assessment meeting and also in the context of her clinical experience and knowledge.[105]  Ms Verstappen stated:

    [105] Transcript page 161 lines 16-17.

    ‘So, but it is an informed guess, you – you are correct. Because we do – we never know how children are going to respond consistently within the context of the environment. Some children make progress really rapidly, and some children make steady but slow progress based on the severity of the impairment’.[106]

    [106] Transcript page 161 lines 21–26.

15. Ms Verstappen’s opinion was that fewer hours of therapy could result in a loss of skills or an increase in behavioural barriers. Further, that increased therapeutic support resulted in an increase in the acquisition of skills.[107]

    [107] Transcript page 192 lines 1-4.

16. Ms Verstappen stated that Aspire offered programs of varying intensity of either 15, 18, 20, 22 or 28 hours per week. Aspire does not provide a program for less than 12 hours.[108] Generally an intensive program is considered to be 20 hours per week.[109]

    [108] Transcript page 170 lines 44-46.

    [109] Transcript page 171 line 1.

Evidence of Dr Kenneth Maclean

1. Dr Maclean is a paediatrician and a geneticist with approximately 20 years clinical experience. His experience includes children with neuro-developmental disabilities, ASD, intellectual disability, language disorders and feeding disorders.[110]

   [110] Transcript page 200 lines 3-8.

2. Dr Maclean assessed VXGN on 8 September 2022 at the family home. He provided several reports[111] and gave oral evidence at the hearing. In addition to providing a clinical assessment of VXGN, Dr Maclean provided an opinion on various research literature (including the research literature referred to in this decision) in relation to the effectiveness of EIBI at different intensities. In doing so, Dr MacLean emphasised that as a clinician he was strongly influenced by an evidenced-based approach to research. He explained that high-quality evidence ensured that the therapies that are likely to assist an individual child are in fact being considered.[112]

   [111] R2(d); R5(d).

   [112] Transcript page 208 lines 8–11.

3. Dr Maclean identified the following diagnoses for VXGN:

   ·Global developmental delay - moderate to severe;

   ·Speech and language delay – severe receptive and expressive language delay; and

   ·Autism spectrum disorder (ASD) – Level 3 (social communication & restricted, repetitive behaviours).[113]

   [113] R2(d).

4. Dr Maclean referred to VXGN as having a composite diagnosis of ‘a neurodevelopmental disorder or a complex neurodevelopmental disorder’.[114] His opinion was that any child affected by a significant developmental delay should have access to evidence-based family-centred early intervention with trained therapists. Further, that the intervention should be individualised and funded in order to maximize the developmental outcome for the child and their family.[115]

   [114] Transcript page 201 lines 2-4.

   [115] R2(d) page 18.

1. Dr Maclean considered that it was important for VXGN to supplement EIBI with speech and occupational therapy.[116] He stated that these therapies were ‘mainstays of therapy intervention in ASD/GSS/language delay’.[117] Dr Maclean also further emphasised the importance of speech therapy for VXGN in context of his school attendance in 2024.[118]  

   [116] R2(d) page 29

   [117] R2(d) page 30; R5(d) pages 5-6; R5(d) page 5.

   [118] R5(d) at page 5.

2. Dr Maclean demonstrated in his evidence a detailed knowledge of the findings of relevant research literature over the years including included Roberts & Prior - 2006, Prior & Roberts – 2011 and Roberts & Williams - 2016.[119] He confirmed that whilst he was strongly guided by these reports, he has since been informed by more recent analyses.[120]

   [119] R2(d) page 18.

   [120] Transcript page 216 lines 8-10.

3. Dr Maclean described Williams & Roberts - 2016 as a ‘seminal guiding paper’ for the management of ASD nationally. He stated that Williams & Roberts - 2016 highlighted the need for early intervention programs for children with ASD to be of ‘sufficient intensity and fidelity to ensure program quality’, notwithstanding he identified that ‘the quality of an intervention is just as important as the quantity of the intervention’.[121]

   [121] R2(c), pages 26-27, also referring to Prior & Roberts - 2012.

4. Dr Maclean explained that Williams & Roberts - 2016 also recommended that the level of intensity of intervention should take into account a range of characteristics of the child and their family. These characteristics included the severity of ASD, presence of an intellectual disability or developmental disorder, the needs of any other siblings and the personal capacity and preference of parents. Furthermore, that children with a greater baseline cognitive skill and high adaptive behaviour scores at baseline will have better outcomes from early intervention.[122]

   [122] R2(d), page 19.

5. Dr Maclean referred also to the literature of Dr Sandbank and stated:

   ‘Dr Sandbank, based on direct experience, detailed knowledge and published systematic review of the relevant literature concludes that intensive support, namely >20 hours of early childhood intervention has not been satisfactorily proven to be more effective than less intensive supports in the range of 5-15 hours per week’.[123]

   [123] R5(d) pages 6-7.

6. Dr Maclean’s opinion was that:

   ‘ABA is likely to have a modest beneficial effect in VXGN noting his age and more recent data as to the benefits of ABA based on well conducted RCT trials and systematic reviews / meta-analysis’.[124]

   [124] R2(d) page 23.

7. In explaining his opinion Dr Maclean also stated:

   ‘Long term outcomes and response to therapy are typically less in children with moderate to severe disability. VXGN has moderate or above global developmental delay, level 3 ASD and severe speech and language delay. Children with severe ASD, severe behavioural disturbance, severe language delay and GDD, which correlates with IQ (but is not a direct measure of IQ) tend have lesser gains’.[125]

   [125] R2(d) page 24.

8. Dr Maclean described the question of the frequency and intensity of interventions as ‘challenging’ and that cost-effectiveness, predictors of outcome and high-quality studies are directly relevant to the question of the recommended number of hours per week.[126]

   [126] R2(c) page 33.

9. Dr Maclean considered that ABA is an accepted EIBI therapy endorsed by both US and Australian guidelines.[127] Further, that ‘ABA is the principal EIBI with the strongest evidence base’.[128]

   [127] R2(d) page 33 as evidence given in respect of VXGN’s sister HHRQ.

   [128] R2(d) page 28; R5(d) page 2.

10. Dr Maclean’s opinion was that Dr Sandbank’s findings provide an evidence-based/evidence-informed guide as to what might be considered a reasonable and sufficient number of hours of ABA-based therapy week. Dr Maclean identified Dr Sandbank’s conclusions that an amount greater than 20 hours of early childhood intervention had not been satisfactorily proven to be more effective than a reduced level of intensive support in the range of 5-15 hours per week. Further, that Dr Sandbank’s findings aligned broadly with the recommendation recently proposed in the 2022 Autism CRC draft guidelines - Recommendation 56 which provided that practitioners should be aware that the research evidence does not support that more hours of intervention will consistently result in a better outcome for a child and their family.[129]

    [129] R5(c) page 6; R5(d) page 7.

11. Dr Maclean considered that Rogers - 2021 was currently the ‘best’ study in relation to the effectiveness of intervention at different intensities. He confirmed that the findings of Rogers - 2021 identified there to be no outcome difference between intervention provided at an intensity of 15 hours as compared to 25.[130] In this regard, he described Rogers - 2021 as ‘a well-constructed randomised control trial’ with a significantly reduced risk of bias.[131]

    [130] Transcript page 204 lines 24–26.

    [131] Transcript page 204 lines 26-29.

12. Dr Maclean re-iterated the task of recommending a number of hours per week of ABA therapy as ‘challenging’.[132] Nevertheless, having regard to his clinical assessment and his observations of VXGN, Dr Maclean suggested a range of ‘7-8 hours per week, equating to two sessions per week’.[133]

    [132] Transcript page 210 line 18.

    [133] R5(d), page 5.

13. Dr Maclean opined that his estimation of 7-8 hours per week for VXGN remained unchanged in the context of the commencement of mainstream schooling in either 2023 or 2024.[134]

    [134] R5(d) page 30.

VXGN’s position

1. VXGN is significantly impacted by his ASD and global developmental delay. This impact relates to numerous aspects which include communication difficulties, problem behaviours, ability to self-regulate, repetitive behaviours and expressive and receptive speech and language delay.

2. S maintains that the Aspire program is an ‘evidence-based’ early intervention which will address VXGN’s disability.[135] Further, that to be effective as an early intervention, the program recommended by Ms Verstappen ought to be funded.

   [135] Transcript page 89 line 6.

3. S also maintains that VXGN has made minimal progress in the past 12 months as a consequence of inadequate therapy.

The Agency’s position

1. The Agency submits that the current funding for early childhood intervention support is described generally in VXGN’s plan and can be used flexibly. It is VXGN’s parents who have exercised choice and control in respect of this funding to participate in an ABA therapy program through Aspire.[136]

   [136] Respondent’s Closing Submissions at [79-80].

2. The Agency also submits that it is open to the Tribunal to make a finding that the funding recommended by Dr Maclean satisfies the requirements of section 34 of the NDIS Act.[137]

   [137] Ibid at [87].

3. The Agency further submits that the funding sought by VXGN in accordance with the recommendation of Ms Dianne Verstappen through the Aspire program does not satisfy the requirements provided under sections 34(1)(c), 34(1)(d) or 34(1)(e).[138]

   [138] Ibid [86].

Early Intervention Support for VXGN

1. There is no dispute between the parties as to whether the early intervention supports will assist VXGN to pursue his goals and aspirations and assist him to undertake activities that will facilitate his social and economic participation. In this regard I am also satisfied that the criteria under sections 34(1)(a) and 34(1)(b) of the NDIS Act are satisfied.

Subparagraph 34(1)(d): Will the Aspire Program be, or likely to be, effective and beneficial for VXGN, having regard to current good practice?

1. In my view the substantive issue in respect of early intervention support is whether the Aspire Program, provided at the intensity recommended by Ms Verstappen, will be, or will likely to be, effective and beneficial for VXGN having regard to current good practice. Consideration of this issue invokes the operation of rules 3.2 and 3.3 of the NDIS Rules which provide as follows:

   Effective and beneficial and current good practice

   3.2     In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:

   (a)     published and referred literature and any consensus of expert opinion;

   (b)     the lived experience of the participant or their carers; or

   (c)     anything the Agency has learnt through delivery of the NDIS.

   3.3     In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.

2. The Tribunal is required to be positively satisfied that section 34(1)(d) is established on the evidence.[139]

   [139] National Disability Insurance Agency v WRMF [2020] FCAFC 79 AT [201]; Beezley v Repatriation Commission (2015) 150 ALD 11 at [68].

3. I accept the evidence of Dr Maclean that ABA therapy is an accepted EIBI therapy and endorsed by both Australian and US guidelines. In this regard I also refer to the findings of both NAC - 2009 and NAC - 2015 which support ABA therapy as an established treatment insofar as there is compelling evidence to show that ABA demonstrates favourable outcomes for children with ASD.

4. I also accept Dr Maclean’s opinion that in the context of VXGN being affected by a significant developmental delay he should have access to an evidence-based early intervention with trained therapists.[140]

   [140] R2(c).

5. Having considered the evidence, which includes expert opinions and voluminous research literature, I am therefore satisfied that ABA therapy as an EIBI and provided by Aspire is an established treatment that will be beneficial to VXGN.

6. Notwithstanding, I am not satisfied that an intensity of EIBI for VXGN of 20 hours per week will be, or is likely to be, effective and beneficial for VXGN having regard to current good practice.

7. In this regard the evidence of both Dr Sandbank and Dr Maclean was highly persuasive. I am satisfied that the expert opinions of Dr Sandbank and Dr Maclean, and the research literature upon which those opinions relied, correctly informed the Tribunal in respect of the outcomes of early intervention for VXGN at differing intensities.

8. In respect of Dr Sandbank, my considerations were as follows:

   ·I accept Dr Sandbank is an internationally renowned expert on early interventions for children on the autism spectrum and suitably qualified to provide an expert opinion on the following matters:

   othe current state of clinical research; and

   owhat the current clinical research establishes in relation to intervention intensity and the effectiveness of any outcome for children with ASD.[141]

   [141] R9(b) at [6].

   oProject AIM, led by Dr Sandbank, is the most recent quantitative synthesis of controlled tests of non-pharmacological interventions for children with ASD.[142]

   [142] R9(b) at [33].

   oIn providing her opinion Dr Sandbank had considered all relevant and available research studies up until the time of her final report in December 2022 (shortly prior to the hearing).

   oDr Sandbank’s opinion correctly reflects the current scientific evidence and research findings in relation to the effectiveness of early intervention at different levels of intensity. This opinion that the current available clinical research does not satisfactorily establish that more intensive supports of 20+ hours per week of early childhood intervention is more effective than less intensive supports, such as 5 and 15 hours per week.

   oDr Sandbank’s opinion includes review of the Rogers - 2021 study which concluded similar ‘outcomes’ for children with ASD irrespective of 15 or 25 hours of intervention per week.

   117.    In respect of Dr Maclean, my considerations were as follows:

   ·Dr Maclean demonstrated a detailed knowledge and understanding of the current research, recommendations and guidelines (including draft guidelines as proposed) in respect of current good practice in 2023 for early childhood intervention for children with ASD. Dr Maclean’s knowledge and understanding is of the level that is expected of an expert giving evidence in this Tribunal. 

   ·Dr Maclean’s clinical assessment and opinion in respect of VXGN was informed not only by his extensive clinical skills and expertise but also his knowledge and understanding of high-quality and up-to-date research literature.

   ·Dr Maclean’s recommendation of a range of 7-8 hours of early intervention for VXGN[143] is well-reasoned. Dr Maclean acknowledged appropriately the challenges in providing a recommendation and I formed the view that his recommendation was cautiously and carefully made after consideration of a significant number of factors including the following:

   [143] R5(c), page 4.

   oHis professional commitment to being strongly influenced and informed by up-to-date evidence-based research insofar as decisions concerning therapies for children with ASD.[144]

   [144] R5(c), page 6.

   oHis strong guidance that the question of intensity versus outcome has more recently been informed by the recent studies of Dr Sandbank in Project AIM and Rogers - 2021.[145]

   [145] Transcript page 205 lines 21-40.

   oThe findings of Rogers - 2021 which identified that there was no difference between 15 and 25 hours per week of early intervention in terms of outcomes for a child with ASD.[146]

   [146] Transcript page 204 lines 24-25; R5(c), page 5.

   oThe findings of Dr Sandbank research in Project AIM and her opinion.

   oThe reported experience of VXGN’s family and the improvements noted during the Little Steps program and the subsequent therapy of lesser hours.

   oHis clinical experience as a paediatrician over a period of twenty years.

   oHis clinical assessment of VXGN which included a ‘first-hand evaluation’ conducted at the family home.

   oHis clinical opinion that VXGN has several predictors of achieving lesser gains with early intervention having regard to research of Dr Sandbank.[147]

   [147] R2(c), page 34.

   oThe recent findings of Trembath - 2021 which reported a ‘limited and fragmented base linking the intensity of intervention with an outcome for children with ASD’. 

   oThe 2022 Autism CRC Draft guidelines which currently propose as a recommendation that practitioners inform parents that there is no set number of hours per week that will necessarily led to the best outcome for their child. Further, that practitioners should be aware that the current research evidence does not support the proposition that supports delivered in greater amounts consistently leads to the best outcome for their child. 

9. The evidence of Ms Verstappen was not persuasive. In this regard, I make the following comments:

   ·The Aspire program recommended by Ms Verstappen refers to purported benefits and outcomes from EICI. In doing so Ms Verstappen refers to the findings of ‘dated’ research literature, the accuracy of which has been superseded by more recent studies.[148]

   [148] R9(b), page 5.

   ·Understandably VXGN’s parents were persuaded and encouraged by the content of the information and material provided to them by Aspire Intervention. Unfortunately, the information provided by Ms Verstappen did not incorporate the findings of current research, recommendations or guidelines in respect of current evidence-based good practice in 2023. Notably, research studies available during or prior to 2012 constitute only 25 percent of the published research currently available.[149]

   [149] R9(b), page 6.

   ·As far back as 2015 the ECIA Guidelines identified a number of key practices for early child intervention practitioners. These included the recommendation that practitioners maintain their knowledge and skills through lifelong continuing professional education. This requires ongoing review and monitoring of their practices and a strong culture of professional enquiry[150] (Tribunal emphasis added).

   [150] R7; ECIA Guidelines page 364.

   ·The information provided by Aspire Intervention to VXGN’s parents does not reflect or incorporate current research literature. By way of example Roberts & Williams - 2016, a study relied upon by Ms Verstappen was informed by approximately 73 reports. By comparison, Dr Sandbank’s research findings and opinion are informed by approximately 289 reports.

   ·In her evidence Ms Verstappen demonstrated an absence of knowledge of the current and relevant research literature in respect of the relationship between the intensity of early intervention and outcomes for children with ASD.

   ·In oral evidence Ms Verstappen confirmed her recommendation was based on her ‘clinical view, with my best understanding of the knowledge and the interpretation of the evidence that I’ve read’.[151]

   [151] Transcript page 158 lines 44–46.

   ·Ms Verstappen then proceeded to confirm that at the time of providing her recommendation she was ‘probably aware’ of research subsequent to Roberts & Williams - 2016; however, had not, at that time, updated ‘my report templates’.[152] When clarification was sought, Ms Verstappen acknowledged that at the time of providing her recommendation she was also not aware of Dr Sandbank’s research, Project AIM, and that she was uncertain as to whether she was aware of Autism CRC - 2020.

   [152] Transcript page 159 line 8.

   ·Ms Verstappen confirmed in her oral evidence that she had since read Autism CRC – 2020. Of concern however, she stated that whilst she was now aware of Dr Sandbanks’ meta-analysis, she had not read Dr Sandbank’s research literature in any depth.[153]

   [153] Transcript page 159 lines 37-38.

CONCLUSION

1. In respect of the Aspire program, section 34(1)(d) of the NDIS Act is not satisfied. Therefore, because the criteria in section 34(1) are cumulative, it is not necessary for the Tribunal to consider whether the further mandatory criteria under sections 34(1)(c), 34(1)(e) or s34(1)(f) of the NDIS Act are met.

2. I am satisfied that the Aspire program, which recommends 20 hours early invention per week for VXGN, is not evidence-based having regard to current research literature. I am therefore also not satisfied that the Aspire program will be, or is likely to be, effective and beneficial for VXGN and represents current good practice.[154]

   [154] Section 34(1)(d) NDIS Act.

3. Having regard to the evidence of Dr Maclean, Dr Sandbank and the relevant research literature I am however satisfied that ABA therapy as an early intervention, at a reduced intensity will be, or is likely to be beneficial to VXGN. I am therefore satisfied that the funding of 8 hours per week for Early Childhood Intervention in the form of ABA therapy through Aspire for VXGN is a reasonable and necessary support in all of the circumstances.

4. In relation to the provision of occupational therapy and speech therapy I agree with the specification of these supports as ‘stated supports’. Based on the evidence of Dr Maclean[155] I consider it is imperative that VXGN receives these supports and that the funding for these supports not be redirected elsewhere.

   [155] R5(d).

DECISION

The decision under review is set aside and remitted to the Respondent (‘the Agency’) with the directions that:

·Within 14 days of the date of this decision, the Agency include in the Applicant VXGN’s statement of participant supports the following supports as reasonable and necessary:

o8 hours per week of individual Applied Behaviour Analysis (ABA) therapy;

o4 hours per year for the preparation of a report by an Early Intervention therapist;

o26 hours per year of Level 2 Support Coordination at the applicable NDIS Price Guide rate;

o52 hours per year of occupational therapy to be included as a 'stated support' so that the funding cannot be used flexibly; and

o52 hours per year of speech therapy to be included as a 'stated support' so that the funding cannot be used flexibly.

·     The date by which the Agency must reassess the VXGN’s plan is to be 12 months after the date the date of this decision;

·     All other supports in VXGN’s existing statement of participant supports be replicated pro-rata from the date of this decision until the reassessment date; and

·     That the supports for VXGN’s Improved Daily living budget are to be ‘plan managed’.[156]

[156] Section 42(2) National Disability Insurance Scheme Act 2013 (‘NDIS Act‘).

141.    

I certify that the preceding 140 (one hundred and forty) paragraphs are a true copy of the reasons for the decision herein of Senior Member J Collins.

..........................[SGD].........................

Associate

4 September 2023