RQWY and National Disability Insurance Agency

[2023] AATA 56

RQWY and National Disability Insurance Agency [2023] AATA 56 (30 January 2023)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Numbers:         2021/6115 and 2022/5930

Re:RQWY

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

Decision

Tribunal:Dr Stewart Fenwick, Senior Member

Date:30 January 2023  

Place:Melbourne

The Tribunal sets aside the decisions under review dated 5 August 2021 and 18 July 2022 and remits them for reconsideration in accordance with the direction the Little Learners program delivered by Autism Partnerships Australia is a reasonable and necessary support for RQWY.

...........................[sgd].............................................

Dr Stewart Fenwick, Senior Member

Catchwords

NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – child applicant with autism spectrum disorder – ABA therapy – centre-based learning model – dispute concerning location and duration of therapy – consideration of best practice – decision set aside and remitted for reconsideration

Legislation

Administrative Appeals Tribunal Act 1975 (Cth)

National Disability Insurance Scheme Act 2013 (Cth)

Cases

FRCT and National Disability Insurance Agency [2019] AATA 1478
National Disability Insurance Agency v WRMF [2020] FCAFC 79

WKZQ and National Disability Insurance Agency [2019] AATA 1480

Secondary Materials

National Disability Insurance Scheme Rules – Support for participants 2013

Roberts, J and Williams K, ‘Austism spectrum disorder: Evidence-based/ evidence-informed good practice for supports provided to preschool children, their families and carers (February 2016)

REASONS FOR DECISION

Dr Stewart Fenwick, Senior Member

30 January 2023

background

1. The Applicant is a four-year-old boy who seeks review of two decisions of the Respondent agency, the NDIA, primarily in relation to the amount of funding approved for capacity building supports.

2. RQWY was accepted as an NDIS participant in late 2020 and his first plan included funding of approximately $25,000 for capacity building supports in the form of early childhood intervention within the home and community settings.

3. Matter 2021/6115 arises from a decision in August 2021 to vary a prior decision that set capacity building funding at approximately $76,000. The revised figure of approximately $107,000 was designed to cover the expenses of a particular program for 12 months at a level of three days per week, as opposed to the four days per week requested.

4. Matter 2022/5930 arises from a decision in July 2022 to approve capacity building funding at approximately $73,000 for 12 months, including a monthly spending cap. This decision came about following the exhaustion of the prior funding. Both matters relate to the same program and provider.

5. The program in question in these matters is the Little Learners Program (the program) run by an organisation known as Autism Partnership Australia (AP), conducted on-site at a facility in North Melbourne. RQWY was enrolled in this program in December 2020, and it takes the form of participation in four days a week of intensive behaviour therapy known as Applied Behaviour Analysis (ABA). The program carries a full cost of approximately $164,000 per year, and comprises 27 hours of ABA, plus certain other charges for professional services.

6. The Applicant seeks as an outcome, in essence, a finding that the program is a reasonable and necessary support. Such a finding would, in practice, ensure funds expended to date by the family would be covered by the NDIS. A plan has been devised for kindergarten transition in 2023 that includes delivery of the program with some variation to prior years.

7. RQWY was represented before the Tribunal and a substantial amount of material was lodged on his behalf. Evidence was given at the hearing by RQWY’s parents, and Ms Karen McKinnon, the Supervising Psychologist and National Clinical Director at AP. Expert evidence was given at the hearing on the Applicant’s behalf by Dr Erin Leif of the School of Educational Psychology and Counselling, Faculty of Education, Monash University.

8. The Respondent also lodged a substantial amount of material, with documents lodged under s 37 of the Administrative Appeals Tribunal Act 1975 (T documents) in each matter, and a combined Hearing Bundle (HB) that includes the reports of expert witnesses, and material produced under summons by AP. Despite the issuing of Summonses, RQWY’s own paediatrician, Dr Paul Joffe, neither appeared at the hearing, nor provided the requested patient files.

9. Two expert witnesses were called by the NDIS at the hearing: Dr Micheal Sandbank, Assistant Professor, Department of Health Sciences, School of Medicine, The University of North Carolina at Chapel Hill; and, Associate Professor Michael McDowell, Department of Paediatrics and Child Health, University of Queensland, and private developmental paediatrician (who was referred to in evidence as Dr McDowell).

10. Dr McDowell’s evidence included his opinion based upon a video consultation with RQWY. The evidence of Drs Leif and Sandbank addressed certain theoretical aspects of ABA therapy.

11. Due to the somewhat confined and technical nature of the matters, the parties lodged written submissions at the close of the hearing.

    legislation

12. Pursuant to s 33(2) of the National Disability Insurance Scheme Act 2013 (the Act) a participant’s plan must include a statement of participant supports, including the ‘reasonable and necessary supports (if any)’ that will be funded under the NDIS. In determining whether to approve a statement of participant supports, a decision-maker must be satisfied as to the matters identified in s 34, and apply the Rules made under s 35.

13. Accordingly, s 34(1) requires that decision-makers be satisfied of all of the following in relation to the funding or provision of each 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.

14. The phrase ‘reasonable and necessary supports’ is not defined in the Act, but it is to be understood as a composite phrase, and determining what support might qualify in a particular case is a fact-intensive exercise (National Disability Insurance Agency v WRMF [2020] FCAFC 79, at [149]-[152]).

15. The rules made to assist in the assessment and determination of reasonable and necessary supports are the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Support Rules). Part 3 ‘Assessing proposed supports’ elaborates upon the factors identified in s 34(1)(c)-(f). I summarise relevant aspects of the rules as follows:

    (a)r 3.1 describes deciding value for money in terms of whether the costs of the support are ‘reasonable, relative to both the benefits achieved and the cost of alternative support’ considering, among other things:

    (i)‘whether there are comparable supports which could achieve the same outcome at a substantially lower cost’ (r 3.1(a)); and

    (ii)whether funding or provision of the support is likely to reduce the cost of supports in the long term (r 3.1(c));

    (b)r 3.2 provides that in deciding whether a support is effective and beneficial, consideration be given to the available evidence including:

    (i)published and referred literature and expert opinion (r 3.2(a));

    (ii)the lived experience of the participant and carers (r 3.2(b)); or

    (iii)anything the Agency has learnt through delivery of the NDIS (r 3.2(c));

    (c)r 3.3 provides that in determining whether a support will be, or is likely to be effective and beneficial for a participant, the CEO (or a decision-maker) ‘is to take into account and if necessary, seek expert opinion’;

    (d)r 3.4 provides that in deciding whether the funding or provision of the support takes account of what it is reasonable to expect families, carers, networks or the community to provide, consideration be given to, among other things (r 3.4(a)):

    (i)that it is normal for parents to provide substantial care and support;

    (ii)whether, because of their disability, a child’s care needs are substantially greater than those of children of a similar age;

    (e)provision is made in rr 3.5 and 3.6 for matters addressed in Schedule 1 to be considered when determining if supports are most appropriately funded by the NDIS including, relevantly, for early childhood development:

    (i)r 7.8 provides that the NDIS ‘will be responsible for personalised supports, specific to a child’s disability (or developmental delay), which are additional to the needs of children of a similar age and beyond the reasonable adjustment requirements of early childhood development service providers’;

    (ii)r 7.9 provides that the NDIS will be responsible for early interventions for children with disability (or developmental delay) which are ‘specifically targeted at enhancing a child’s functioning’ and likely to reduce their future support needs;

    (iii)r 7.10 provides that the NDIS will not be responsible for meeting early childhood care and education needs or clinical needs met by the health system.

    issues

16. The sole issue in this matter is whether the Little Learner’s program is a reasonable and necessary support in the context of RQWY’s circumstances.

    evidence

17. Prior to dealing with the written and oral evidence in this matter I consider it helpful to provide a brief chronology of events.

Date	Event	Reference[1]
4/3/18	Applicant born.
2020	Low intensity intervention with speech pathologist for 6 months via telehealth, Jan-Jul 2020.	5930/T1D; HB37, 2336
13/7/20	Applicant assessed by paediatrician Dr Trusha Brys, possible communication problems identified.	6115/T3
16/7/20	Dr Brys writes in support of Kindergarten Inclusion Support (KIS) program funding in respect of Global Development Delay.	5930/T4
24/9/20	Applicant assessed by paediatrician Dr Joffe with ASD level 2+, and severe communication disorder, access to specialised kinder environment ‘imperative’, speech pathology recommended.	6115/T4
25/9/20	AP Enquiry Form lists ‘date of enquiry’ as 25 Sept, form also notes ‘Info gathered 09/12/2020’.	HB37, 2428
11/2020	Third child born.	HB3, 38
24/11/20	First NDIS Plan approved.	6115/T15
15/12/20	AP Early Intervention Screening Interview form.	HB37, 2430
16/12/20	Fee schedule provided by AP.	6115/T6
18/12/20	Statement of Recommendations by AP summarising RQWY’s presenting concerns, recommends 27 hours/week 1:1 intensive behavioural therapy, 12 hours/month behavioural consultation, associated case consultation, assessments and report writing.	HB37, 2287-2289
20/12/20	Acceptance for Service – Little Learners.	HB37, 2334
25/1/21	Dr Joffe writes in support of NDIS appeal, noting regression following birth of sibling, complex family situation, assessing RQWY as Level 3 ASD, needing ‘intensive behavioural support management’.	6115/T7
1/3/21	Applicant commences the program.	ASFIC [48], HB1, 10
31/3/21	AP Developmental Assessment and Intake Summary from Vineland Adaptive Behaviour Scales survey conducted 2 March and Mullens Scales of Early Learning administered 29 March.	HB37, 2391
6/4/21	Further fee schedule provided by AP.	6115/T8
	Updated Statement of Recommendations by AP incorporating assessment outcomes, recommends 27 hours/week 1:1 intensive behavioural intervention, 12 hours/month behavioural consultation, 1 hour/week speech and language pathology, associated case consultation, assessments and report writing.	6115/T9
23/4/21	Second NDIS Plan approved.	6115/T16
25/6/21	AP Progress Report notes interventions effective in increasing functional capacity, maintains recommendation re interventions.	HB37, 2295-2307
5/8/21	Third NDIS Plan approved.	6115/T17
21/12/21	Report of Speech Pathologist Nadia Marussinszky notes intervention has been effective, but more input required for speech, recommends 4 hours/month speech pathology in addition to existing recommended therapy and consultations.	HB37, 2311-2313
8/4/22	Acceptance for Service – Speech & Language.	HB37, 2351
20/5/22	Fourth NDIS Plan approved.	5930/T29
18/7/22	Fifth NDIS Plan approved.	5930/T30

[1] Where a document appears in two sets of T documents only one source is referenced.

1. The Applicant’s parents gave concurrent evidence at the hearing. They confirmed a Statement of Lived Experience dated 20 September 2022 (HB3) which states, in summary:

   (a)they held concerns for their son from the age of one year and three months and consider, in hindsight, RQWY’s behaviour then to be typical of level 3 autism ([2]-[3]);

   (b)at the age of two, RQWY received 30 minutes per fortnight of speech therapy for several months, and participated in a weekly community program at the Royal Children’s Hospital ([5]);

   (c)they worked at home with RQWY in the face of lockdowns in 2020, and with the assistance of the speech therapist and material on YouTube, but made little progress ([6]-[7]);

   (d)RQWY exhibited difficult behaviour in the community, daily life was very chaotic, disrupted, and affected other family members, with their third child born in November 2020 ([10]-[11], [15]);

   (e)Dr Joffe made no specific recommendations about providers, they identified La Trobe University (which was at capacity), and early intervention providers not based in centres, and then ‘found’ AP at the end of 2020 ([12]-[14]);

   (f)the team at AP ‘designed an ABA program around [RQWY’s] needs, and specific developmental goals he would work towards …’, and RQWY attended from March 2021 with some interruption from illness and COVID isolation ([14], [16]);

   (g)in addition to the ABA therapy, RQWY has received regular speech pathology at AP as they feel it is less stressful for him to receive this at the same location ([18]);

   (h)the program ‘has proved to be the ideal learning environment … [RQWY] has made gains across all areas so much more efficiently than we were ever able to do at home’ ([19]);

   (i)they have worked as a family with the team at AP providing ‘much needed skill-building’ ([26]);

   (j)the father works full time, and mother is a casual worker in the retail sector and carer for the three children ([32]);

   (k)Dr Joffe and AP have recommended RQWY continue the program for the next two years, with transition to kindergarten in 2023 and school in 2024, and while he has received an offer from a kindergarten, he would only be able to attend with an AP therapist as per his transition plan ([36]-[37]); and

   (l)videos are provided of RQWY’s behaviour in different scenarios at home ([39]).

2. In cross-examination the parents provided the following further evidence:

   (a)their own research led to the early speech pathology intervention, which was the only service available, and they sought the advice of Dr Joffe after trying to work with RQWY at home and seeing his behaviour change;

   (b)the mother had experience with children with autism as a teacher, and was relieved to find a path for RQWY as stand-alone services were not meeting his global needs;

   (c)she understood both paediatricians to have identified autism and global developmental delays, and was worried with a baby on the way that RQWY may not be able to be enrolled in kindergarten;

   (d)the parents heard about early intervention from a nurse, not knowing what it meant, and understood there were only two out-of-home programs in Victoria being at La Trobe University and AP;

   (e)ultimately, they applied to both these programs and also to Learning For Life, as Dr Joffe had recommended out of home intensive services because RQWY needed more than specialist therapy;

   (f)inquiries were also made with other service providers but there were wait lists, and then RQWY was assessed on intake at AP for three days a week at home service, or four- and five-days centre-based care;

   (g)the mother spoke to parents who attended both La Trobe and AP programs, the parents ‘really wanted’ the La Trobe program, but RQWY was not successful, and they considered they had very similar approaches;

   (h)the mother would have had to quit her work for RQWY to participate in Learning For Life interventions, which would be three-days-per-week at home, but would have done so if required;

   (i)the mother acknowledged Dr Joffe had initially recommended other supports, including occupational therapy and psychology, but understood this as being in order of priority commencing with ABA, stating that she considered the program targeted all RQWY’s needs;

   (j)the mother did not consider the government-funded KIS support suitable for her son because teaching aides are not therapists, however she considered RQWY could transition with ongoing attendance at AP; and

   (k)with respect to the AP fee schedule, the mother understood that the elements in the document are broken down for each child individually, and she stated that RQWY did not access speech pathology for one year due to a waitlist, but they implemented some techniques at home.

3. In response to questions from myself, the parents stated that RQWY has been enrolled in kindergarten two days a week in 2023, although they felt he may only attend for half a day. Transition to kindergarten would require, in their view, significant support from AP therapists. They stated that RQWY’s level of comprehension has really ‘taken off’, and that they considered the program to be cohesive and ‘on the mark’.

4. The parents highlighted particular issues, one being the capacity to attend a range of appointments with individual therapists which they could ‘not possibly’ manage particularly given other care responsibilities. Despite RQWY suffering multiple bouts of ‘severe illness’ in the past, AP had provided support via Zoom and had also conducted home visits. The parents stated further that RQWY is now showing signs of ADHD and has commenced a trial of the medication Ritalin.

5. In further cross-examination, the parents stated that were the Applicant to be withdrawn from intensive supports now, he would not be able to attend kindergarten. This view was informed by the mother’s personal experience as a teacher and of the roles, responsibilities and need for assistance arising in that environment. She agreed that time with the program might be split across the two locations, three days a week with AP and one at kindergarten, or perhaps two days at each location.

6. Ms McKinnon adopted in her evidence the various assessments and reports from AP concerning RQWY included in the materials, noting her specific responsibility was around the clinical assessments, recommendations, and the hours of intervention. She stated that her day-to-day duties are largely to do with mentoring and training, and she had been involved with regular meetings concerning RQWY, some involving the family.

1. She stated that recommendations made for RQWY ‘sit outside the therapy he receives’. Her responsibility was to make a recommendation as to the number of hours of therapy, following which children are moved into the program that is ‘the best fit’. Ms McKinnon stated she is guided by clinical research, family preferences, and her own clinical opinion about a child and their family.

2. Ms McKinnon agreed that she had considered other options, and stated that the family were entitled to take her recommendation on interventions to any service provider. If a family is interested in the AP services, then she will rule programs in or out based on what is suitable.

3. Ms McKinnon explained that the program is delivered over four days in morning and afternoon blocks, according to individualised goals for each child based on a work-book. Group time (1:2) is scheduled during the middle of the day. The centre resembles kindergarten as it is an open plan setting, but children pursue their own plans.

4. When asked whether it is possible to distinguish progress as a function of therapy as against natural development, Ms McKinnon responded that it was difficult in RQWY’s case. She stated that some participants show no progress based on standardised measures, as was the case with RQWY over the first year. Ms McKinnon described it as ‘turbulent’, with learning impacted by COVID, illness, sleep problems and family challenges (living in a small house and social isolation).

5. Ms McKinnon considered they had achieved some meaningful gains and stopped any decline in development. A transition plan for kindergarten entry has been mapped out, with ‘kinder inclusion’ targeted for next year and some additional work at home.

6. In cross-examination, Ms McKinnon stated that the program is one of a range offered by AP, that also includes sessional or flexible interventions. She acknowledged having previously been a Director of a company related to the AP business, and also acknowledged the national and international presence of AP. She considered AP to be one of the bigger providers in Melbourne, among what she considered a competitive field.

7. Ms McKinnon stated that she had designed the program along with colleagues, but could not remember the exact nature of earlier iterations. She stated that not many children attend the five-day version of the program, perhaps one or two of the 42-44 children currently enrolled in North Melbourne.

8. She explained that the 21 hours of care provided 1:1 is given by staff titled Behavioural Therapists. Ms McKinnon stated that there is no specific qualification or standard for that role, and staff complete in-house training at AP. There is no prior training or qualification required, but a lot of the staff have related undergraduate qualifications in such fields as psychology or disability studies.

9. Ms McKinnon stated that training and supervision is provided by consultants titled Board Certified Behavioural Analysts, or staff with Master’s degree qualifications, who also work with families to design the interventions. In North Melbourne, AP employ the same number of therapists as children, and 9-10 consultants.

10. In response to a question from myself, Ms McKinnon added that the profession is presently self-regulating and that ‘board qualification’ refers to the standard derived from the relevant American professional association. She stated that staff at AP are trained in excess of the standard 40 hours, and receive practical training.

11. Ms McKinnon stated that the therapists are deployed in the other programs, including some in school-age transition or home-based therapy. RQWY had a team of two-to-three therapists, and children needing less than four days’ intervention were assigned therapists for example in five half-days, or three full days. One young child is only accessing allied health (psychology and speech pathology) at the moment.

12. When asked further about sessional services, Ms McKinnon stated that a child needing, for example, 15 hours intervention can be streamed to a sessional service designed to their needs. RQWY could be moved to such a service, subject to any wait list, but Ms McKinnon would not recommend reduced hours. She rejected the notion that RQWY required a four-day program, responding that it is an intensity of 25-30 hours that is required.

13. Ms McKinnon stated that the program was essentially the same one that began in 2011, although the cost had increased. She accepted the proposition that it is ‘very expensive’, with the additional cost from the higher proportion of 1:1 time, with cost varying depending on which elements are included.

14. With respect to the significance of a diagnosis of Level 2 or 3 autism, Ms McKinnon stated that the majority of children at the centre have a level 3 diagnosis. She considered that the distinction would lie in the goals established, rather than the level of intensity provided.

15. Ms McKinnon stated that the option of sessional support was discussed during screening interviews with RQWY’s parents. The four-day model was decided upon due to the Applicant’s needs and family circumstances. She was aware that RQWY’s funding ran out at one point, but stated that a sessional model would require the same amount of funding, and so would be no easier for the family. Ms McKinnon stated that RQWY left the service for a couple of weeks and the family did look for other support, but there were waiting lists elsewhere.

16. With reference to levels of intervention that would be efficacious for RQWY, Ms McKinnon rejected a hypothetical 10 hours as being better than zero hours. This was because 10 hours was not sufficient for his needs, but she stated it would be hard to distinguish between 25 versus 27 hours, and she would be worried about 20 hours, or a level of 10-15 hours.

17. When asked specifically why 20 hours would not be efficacious for RQWY, Ms McKinnon replied that she would absolutely lose confidence at that level of intervention due to RQWY’s needs at the point of transition to kindergarten. She reiterated that she could not distinguish two hours here or there, but she was more confident that significantly fewer hours ‘would be detrimental’.

18. Ms McKinnon reiterated that the program exists outside of a discussion of the assessment of hours of therapy needed by a child. I asked her to again explain the manner in which clinical assessment informed a decision as to hours, and she stated that assessment of learning needs is independent of any service provided, and informed by research.

19. When asked about how a specific number of hours is arrived at, she agreed that a child could be assessed as needing any number of hours. Ms McKinnon provided examples of children doing 12 hours per week, 19.5 hours per week and occasionally closer to 40. She confirmed that any assessment falling below 21 hours of 1:1 intervention would be dealt with as a sessional enrolment. However, Ms McKinnon also stated that RQWY could have had his recommended hours delivered in a sessional manner because ‘sessional just means the start and finish times are different’, so it is more flexible.

20. Ms McKinnon further confirmed that home environment was one of the variables that was considered in this case, due to the small house, other young children, and both parents working. Ms McKinnon described centre-based learning as offering RQWY an upside in the form of being with other children and different resources, including toys.

21. She stated there are at present approximately 47 children in some form of sessional program, but just a small number of those are young children. A further model is Little School delivered 1:2, with some children getting 1:1 support for days they attend kindergarten.

22. When asked again about the clinical judgment as to the appropriate number of hours, Ms McKinnon replied that it depends on the child. She added: ‘but I think the research indicates children who receive 15 to 40 hours – we don’t really know the exact dosage, but 15 to 40 hours show some benefit from the type of intervention that we do’. Ms McKinnon agreed with the proposition that there was no published research about the program.

23. Ms McKinnon was then asked to consider the specific finding of Dr Sandbank that research does not establish that 27 hours of intervention is unilaterally more effective than five or 15 hours per week. She disagreed, stating that numerous people have different positions, she had read analysis, and had come to a different conclusion. Ms McKinnon stated there is no research to guide a fine-tuned analysis of hours. She stated there are, rather, three markers being research, clinical experience, and family preferences.

24. With respect to a concern that intensive centre-based therapy can be harmful, Ms McKinnon noted that she had seen this view in Dr McDowell’s report. She stated that it was important to develop a connection with a child with autism and this can occur at home or at a centre, and learning in a different environment can enhance that experience.

25. When taken again to the issue of intensity, Ms McKinnon agreed that there are some practicalities associated with a program that is packaged as a four-day per week service, adding that variation arises with what children are learning across a day, and between days. As the designer of the program, she stated that it was for children that need the upper end of 25-plus hours per week intervention.

26. Ms McKinnon was directed to the draft national guideline issued for public consultation by the Autism CRC (a Federal government supported ‘cooperative research centre’) (HB34) to which she had made a submission. Ms McKinnon:

    (a)agreed that proposing an amount and duration of supports that is likely to lead to the most meaningful and sustained learning (recommendation 56) was relatively general in nature as a recommendation;

    (b)considered that not impinging on the natural roles of and time with family (good practice point 56.6) was to be understood in the context of the family, culture, and daily activity;

    (c)acknowledged and agreed with the recorded concerns of the autism community that both too little and too great levels of intervention (good practice points 56.8 and 56.9) can be detrimental;

    (d)agreed that more intensity than a family or child can handle carries risk (in response to a question about four days per week as a ‘default option’); and

    (e)in respect of the statement that research does not support the concept that greater amounts of support consistently lead to better outcomes (good practice point 56.3) stated that it depends upon what is considered ‘more support’.

27. Ms McKinnon then restated her evidence that professional opinions differ as to intensity of supports. She stated that her fundamental approach was evidence-based, including from hundreds of children she has seen. Ms McKinnon reiterated her view that there would be detrimental effects for RQWY if the intensity of supports was dropped.

28. I raised the AP fee schedule with Ms McKinnon, who stated that this is constructed under the direction of the management team. She agreed with the interpretation that her responsibility remained essentially with specifying the hours of support. She also did not have visibility of RQWY’s NDIS funding, agreeing that this is handled by AP’s NDIS Families Advocate.

29. Cross-examination then addressed directly the relationship between the program and NDIS funding (Transcript, P-85-86):

    Counsel: On some of the material I have read it looks as though there is a practise within the Autism Partnership that goes something like this. There are set four or five day a week Little Learners Program and there’s no flexibility. It’s either four or five because that’s the package as designed by you. If a parent wants to enrol the child in the program and they don’t have sufficient funding to meet the four or five day a week cost they are advised simply to enrol in the four-day a week program to utilise their planned funding in pursuance of that program and then to seek additional funding from the NDIS at the time the money runs out. Is that their ordinary practise?

    Witness: The only clarification I would have to that is that there would be discussions with families that the funding that they have may not cover the full amount of Little Learners. They could expect that either they would have to fund that funding elsewhere or go through that process. So it’s not a given of you enrol without the funding we immediately ask you to appeal. There’s the discussion about there’s no guarantees that that funding will be there. The family starts that and then – sort of – you know – go through appeals from there. Other families start with it and find that funding from family members. So it’s not a given that that will be the case.

    Counsel: … So what I don’t understand then is how that’s a responsible position for Autism Partnership to take to the parents that they utilise the whole of their funding on – potentially utilise the whole of their funding on an expedited basis in circumstances where it may leave them with no funds available for any supports for a period of months?

    Witness: Yes. I mean I think there is support around the family. What the underlying sort of consideration with that is that families want their children to engage in that service because they feel like it is the right intensity for them. So there is a commitment from the family in order to continue in that service. There’s definitely times where children will have to leave the service because their funding has run out. And I think we are working with families on plan (a), (b), (c) and (d) should that be happening.

30. In response to a question from myself, Ms McKinnon confirmed that RQWY was on a waitlist for speech pathology in his first year. However, it was her recollection that Ms Marussinszky had some direct consultations with RQWY during that year and they also had received support from therapists.

    Expert Witnesses

    Dr Leif

31. Dr Leif adopted her report (HB18) and I summarise very briefly some key elements:

    (a)‘… ABA is not a single type of intervention for autism. Rather, it is a branch of science that is concerned with the application of basic principles of behaviour and learning to solve socially important problems…’ (HB18, 114);

    (b)professional practice embraces (HB18, 115):

    (i)the objective assessment and analysis of a person’s condition;

    (ii)understanding the context of behaviour and its value to the individual, family and community;

    (iii)utilisation of the principles and procedures of behaviour analysis; and

    (iv)consistent, ongoing assessment and analysis to inform clinical decision-making;

    (c)Early Intensive Behavioural Intervention (EIBI) is the term for ABA delivered to children under six years, and generally involves (HB18, 115-116):

    (i)interventions upon identification of developmental delays;

    (ii)delivering a high and individualised number of hours of therapy per week;

    (iii)delivery for at least a year, with family involvement, in the context of a child’s natural environment; and

    (iv)regular clinical supervision and high levels of staff training and competence;

    (d)there has been some academic analysis of EIBI, and it has been internationally endorsed by a range of bodies;

    (e)a recommendation that ‘parents serve as primary therapists and therapy occur in the home setting may be problematic for several reasons’ (HB18, 123);

    (f)most research demonstrating positive results from ABA has been for intervention by trained therapists working under clinical supervision (HB18, 123);

    (g)parents would need to be trained and supervised in the same manner as therapists and they may find it challenging for a range of reasons (HB18, 123-124);

    (h)no comparative studies to date show less intensive interventions or ‘eclectic’ treatment produces outcomes equal to or superior to those reported in the EIBI literature (HB18, 129);

    (i)the program offers a ‘highly specialised and evidence-informed approach to early intervention that would not otherwise be found in mainstream preschool or kindergarten’ (HB18, 132);

    (j)based on a 2016 visit to AP, Dr Leif considers it to be a naturalistic setting for early intervention and a centre-based program is naturalistic for preschool children (HB18, 134-135);

    (k)in Australia, it has been recommended that 15-25 hours per week of intervention should be provided to a child on the autism spectrum, and an average of 20 hours has been endorsed as good practice (HB18, 137); and

    (l)no single research paper identifies the optimal type and amount of intervention (HB18, 138).

32. In cross-examination, Dr Leif noted that she also had clinical experience in behavioural analysis, including four years at the Lizard Centre in Melbourne. She agreed this was similar to the program in terms of the principles applied, however it was primarily delivered in home, school or community settings, largely by therapists.

33. Dr Leif stated that intensity of delivery is determined by considering the child’s needs and strengths, and the family’s needs. Higher support needs meant a more intense program, and location of delivery, format, and delivery ‘tactics’ are also considered. Dr Leif agreed that individualisation is essential, stating that it is the ‘hallmark of best practice’. She also stated that there is an assumption that there is high intensity in the immediate short term, a period of one or two years, followed by a tapering off.

34. With respect to a naturalistic environment, Dr Leif described this as being the environment typical for a child of the same age. She stated that for a 2-3-year-old, there may be more value in a home-based program, but for preschool-age children the opportunity for centre- based learning is quite typical for that age, if the family desires. Dr Leif stated that research exists showing benefits associated with centre-based work, due to the regular contact with a therapist, and there is limited research directly comparing home-based with centre-based intervention.

35. When asked about Dr Sandbank’s report, Dr Leif agreed with the findings that the program has not been studied, and that research does not support the view that more intervention is unilaterally more effective than less. In respect of her own conclusion about the adoption of 15-20 hours in Australia, Dr Leif added that it is important to use evidence-based practice to make individual decisions.

36. When asked if it was not possible to prescribe an amount, be it 20 or 27 hours, as a default setting, Dr Leif responded that there was no blanket prescription. Rather, new research that proposes evidence-informed, clinical decision-making guidelines was a hopeful development. She stated that it is incumbent on providers to monitor the children’s and family’s responses to intervention.

37. With respect to the CRC guidelines, Dr Leif agreed that parents should be informed about program risks. She stated that research does support the view that higher intensity intervention has resulted in better outcome for some children, but not unilaterally. However, she considered the related recommendation was a little misleading due to research showing larger gains for young children from higher intensity intervention.

38. Dr Leif described at this point her own research with colleagues, referred to in her report, that indicated an average intensity of 31 hours per week across 21 separate studies analysed. In this study, the range of individual programs was between 12 and 45 hours per week, and Dr Leif considered that a high level of intervention was anything above 15 hours per week.

    Dr Sandbank

39. Dr Sandbank adopted her two reports (an initial report from July 2022 (HB30) and a supplementary report  from October 2022 (HB36) in which she responds to Dr Leif’s report). In summary, key elements of these reports are:

    (a)Dr Sandbank has undertaken a meta-analysis of all available published studies into non-pharmacological interventions for children on the autism spectrum, and there has been no clinical research into the efficacy of the program (HB30, 1693-1694);

    (b)‘… the available clinical research is mixed in both quality and conclusions, and does not satisfactorily establish that more intensive supports are unliterally more effective than less intensive supports’ (HB30, 1694);

    (c)‘[s]pecifically, it does not establish that 27+ hours per week of early childhood intervention is unilaterally more effective than less intensive supports, such as 5 and 15 hours per week’ (HB30, 1694);

    (d)‘[n]o single study can definitively answer questions about the differential impact of varying intervention intensity for behavioural interventions…’ (HB30, 1707);

    (e)‘…no studies have satisfactorily established that a threshold value of intensity needed to maximise progress [sic]. It is notable the only high-quality study explicitly designed to directly test this question found that children who received 25 hours per week of EIBI did not exhibit greater progress over two years than children who received 15 hours per week …’ (HB30, 1708);

    (f)Dr Sandbank’s conclusions broadly align with recommendations in the draft national guidelines, of which several recommendations are relevant to the issues, including good practice points 56.2 and 56.3 (HB30, 1708);

    (g)Naturalistic Developmental Behavioural Interventions (NDBI’s) have been subject to more randomised control trials than behavioural interventions, and this suggests that ‘they have significant and positive effects on a range of developmental areas, specifically those that tend to be impaired in autistic children (ie social communication)’, therefore Dr Sandbank concludes NDBI’s and developmental intervention approaches ‘have garnered more evidence from RCTs supporting their effectiveness for improving outcomes for this population than EIBI’ (HB30, 1711);

    (h)Dr Sandbank takes issue with cost-benefit analyses cited by Dr Leif as ‘they situate people with support needs as costly burdens on society, when in fact, it is the responsibility of an equitable society to support all its citizens’ (HB36, 2276); and

    (i)Dr Sandbank draws different conclusions from the available evidence to those reached by Dr Leif (HB36, 2278).

1. Dr Sandbank stated in her evidence that the literature did not specifically indicate that a naturalistic environment was more efficacious, but it is a recommended practice. In the United States the environment was defined as that in which a child would ordinarily be, were they not to have a disability. It is recommended because ‘it’s hoped that any learning that is effected in those environments is more likely to generalise to the context that children are likely to be in’.

2. Dr Sandbank stated that, in her opinion, a centre-based environment was not naturalistic. This was due to the absence of non-disabled peers, and because the learning is very adult-led, in contrast to a pre-school which has a better balance of adult-led and child-led time.

3. Dr Sandbank was asked to elaborate on observations in her second report (commencing at [4]) about the research highlighted in Dr Leif’s report (and evidence). She explained that she had concerns about the methodology and the qualifications of the authors and, as a result, considered their conclusions were not reliable at all.

4. Prior to cross-examination, I sought clarification from Dr Sandbank about the context of policy around interventions in the United States. She replied that there is law that governs the provision of services in natural environments from birth to three years of age. The law defines the environment as one in which a developing or non-stable child would otherwise be participating, including home, community, parks or churches, as well as preschools or day-care. There is then a transition from the age of three-five years to more of a preschool environment.

5. Dr Sandbank stated the law in question is the Individuals with Disabilities Education Act or ‘IDEA’. It ‘specifies that young children should receive early intervention in natural environments to the greatest extend possible, and any time that they would need to depart from those natural environments that would be justified’. For example, should a child need to be in hospital, interventions could be delivered in that environment. Thus, there is a ‘preference in US law for providing early intervention in natural environments to the greatest extent possible’.

6. In cross-examination, Dr Sandbank agreed that it may be the case that for an individual child a higher intensity of intervention might be justified. She agreed this was a clinical judgment that included not just their individual development profile, but also specific daily needs. Dr Sandbank added that she would not necessarily recommend very large numbers of hours because it might infringe on other development opportunities.

7. Dr Sandbank also affirmed that she is familiar with some of the cost-benefit analyses raised in Dr Leif’s report. Further, in re-examination, Dr Sandbank stated that she held clinical experience in Texas, and from this experience it was her view that early intervention supports did not prevent a later need for special education supports once a child reached school age.

8. I put some further questions to Dr Sandbank about the CRC recommendations. She stated that she was impressed with the recommendations because she considered the organisation was willing to ‘state the truth of the matter, which is the evidence is lacking to support’ a finding about whether there is a specific number of hours of intervention that will produce the best developmental outcomes. Dr Sandbank stated that the push for very high levels of intervention preceded the newer evidence which indicates that a child’s development is happening regardless of intervention. She restated her view that there can be a negative effect on children from more hours of intervention.

   Associate Professor McDowell

9. In evidence, Dr McDowell affirmed the contents of his two reports (one dated 10 May 2022 (HB27) and a supplementary report dated 30 July 2022 (HB33)). The following is a brief summary of these reports:

   (a)Dr McDowell summarises the diagnosis, assessment and treatment for RQWY;

   (b)he assesses RQWY as having Autism Spectrum Disorder between level 2 and 3, considers the Applicant may have Global Development Delay, states RQWY’s language is particularly problematic and requires specific diagnosis, and that he may have a form of anxiety disorder (HB27, 1660-1661);

   (c)capacity building supports for ASD include behavioural, relationship-embedded therapies, and specialist input such as speech pathology and, in RQWY’s case, there is a need for a strong emphasis on analysis, family relationships, development for school, and overall integration (HB 27, 1661-1662);

   (d)there is a need for case coordination beyond oversight by the ABA centre itself, the hours of intervention should not arise from ‘service defaults outlined in their brochure’, and Dr McDowell cannot recommend hours per week ‘beyond those already established in AAT precedent’ (HB27, 1663);

   (e)the program is professional and well supervised, but the methodologies are ‘problematically generic’, gains are not well quantified, analysis is limited, and ‘[m]ost importantly, calculation of intervention appears to be constructed around centre-based methodologies. This contrasts with the body of information that EI should be built on family empowerment, and naturalistic strategy as much as possible’ (HB27, 1664);

   (f)‘[f]or these reasons, I hold the opinion that the supports offered will only be of limited effectiveness and benefit’ when defined in behavioural terms, and Dr McDowell is not certain proposed supports will be beneficial for language and communication, and management of social insecurity and anxiety (HB27, 1664); and

   (g)additional materials including that received on Summons from AP did not cause Dr McDowell to substantially change his opinions (HB33, 2110).

10. Dr McDowell was asked to explain the relative advantages and disadvantages of centre-based interventions. He identified two main points:

    (a)the central biological impairment for autism impacts capacity to manage human relations and, he holds the opinion ‘quite strongly, that the optimal methodology of remediation is necessarily built around meaningful human relationships for the child. So, clearly that starts with parents and family …’ and in centre-based learning, interventions create meaning ‘through incentivisation, you know, rewards and consequences and things like that …’; and

    (b)when skills are acquired in a setting outside the one in which the skills are used, and children go to another context like home or kindergarten ‘it doesn’t make sense to them to use the skills they acquired in the centre in this new setting’, giving rise to a secondary step of ‘generalisation’ in which children then learn to apply the skill.

11. Dr McDowell added:

    Look, when I first came across this case, this is a three-year old kid who has a distressed style and I just think there’s a kind of inhumanity about pulling a child out of their family home and doing large numbers of hours of therapy in a foreign centre-based environment. Even for normal kids that’s pretty tough, but for kids who don’t understand how humans work I think that from a human point of view it’s a little bit problematic.

12. When asked about how to arrive at an appropriate level of intensity of intervention, Dr McDowell responded first by reference to ‘guiding principles’, being that in a centre-based environment, the hours of therapy funded may be limited to those hours.  Whereas in a model where parents are empowered, the number of hours of intervention increases. The second concept is that of working with the natural neurological limit of a child’s learning, and work with that in a naturalistic way. Dr McDowell stated that the evidence that more is better has a ‘dark cloud over it’ and came from the ABA industry, whereas from a larger scientific viewpoint ‘the evidence is pretty thin’.

13. Dr McDowell further stressed the role of paediatricians in working with a family and individual children, particularly in a longitudinal sense as they mature.

14. In cross-examination, it was put to Dr McDowell that a child receiving centre-based therapy four days a week would be at home each afternoon on those days and during the remainder of the week. He agreed with the general premise of the question, and noted that a child is embedded in family relationships at those times. However, he considered the work of learning through attention, shared emotions, and reciprocal communication is better and ‘more meaningful to the child in a meaningful relationship’.

15. Dr McDowell accepted that his sole interaction with RQWY and family had been via a one-hour Zoom conversation, but this enabled him to integrate observations with the written material he had been provided in ‘forming clinical gut feelings’, albeit it was not a clinical assessment.

16. When asked about his description of gains made by RQWY (HB27, 1659 [3.7.5]), and whether he accepted they arose from the program, Dr McDowell stated this was probable in ‘large part’, but given that children also learn with their family he could not break this down with certainty.

17. Dr McDowell was asked whether it was relevant to consider that RQWY lived in reasonably chaotic environment being a small house shared with a grandmother. He agreed that this ‘has a major bearing’. Dr McDowell understood this matter as involving the adoption of a particular package of interventions, without meaningful consideration of what was possible naturalistically. He stated there are some families in which ‘absolutely nothing is possible at home’.

18. When asked whether the loss of acquired skills by RQWY might have been due to interruption of the program, Dr McDowell reiterated his point that analysis is required to determine why that may happen. He considered that in behavioural programs, it may be that skills are acquired only through repetition and, if not used, may result in regression. Dr McDowell did not consider there to be a risk of any meaningfully acquired skills being lost were RQWY to be withdrawn from the program.

19. I invited Dr McDowell to comment on the evidence of Dr Sandbank with respect to the different legal and policy contexts in the United States. He explained that he understood the NDIS to have taken over a program previously managed by another government department. He also understood a report was commissioned (by Prior and colleagues) to look at what was or was not effective in treatment of autism, and that out of this arose a document on principles of early intervention. In contrast, Dr McDowell considered that the federal government in the United States may be further advanced, given the adoption of the IDEA legislation.

20. I put to Dr McDowell that I understood from the evidence in this matter that RQWY had three-monthly appointments with his paediatrician, and he responded that this was ‘perfectly reasonable’. He reiterated that the ongoing language problems experienced by RQWY were a ‘red flag’, and he raised a question (to which he did not have a specific answer) about the technical skills available at AP. He described the assessments administered by AP as ‘of a very generalistic nature, they can kind of get away with narratives’ and did not assist with, for example, what he considered to be problematically slow speech development.

    Additional evidence

21. I have considered the material lodged by AP under summons (HB37) and note that in addition to a number of forms and reports concerning RQWY, as well as the formal assessment instruments, it also includes detailed progress reports compiled by staff (HB37, 2359-2390). I note in particular:

    (a)the Mullen Scales of Early Learning assessment (HB37, 2291) in summary identifies RQWY (aged 36 months at the time) with age equivalence visual reception at 19 months, fine motor skills at 22 months, receptive language at 6 months, and expressive language at 4 months;

    (b)the Vineland Adaptive Behaviour Scales (HB37, 2291) is described, in summary, as a caregiver report survey, and RQWY was rated as scoring ‘low’ in respect of all domains, being communication, daily living, socialisation, and motor skills;

    (c)an inquiry form with information gathered on 9 December 2020 (HB37, 2428) that includes the comments ‘hasn’t been able to secure services’, ‘lovely family, family of 3, had a new baby 3 weeks ago’;

    (d)an early intervention screening interview of 15 December 2020 (with some annotations made 19 January 2021) (HB37, 2430) that includes the notes ‘very hectic home life’, and ‘Ref. by Paed’;

    (e)an undated ‘Service Decision Making & Statement of Recommendations’ (HB37, 2434) that includes the comment ‘note family circumstances – tried lower intensity – baby at home, very tricky for family to give him the time he needs’, and also carrying a notation of 25-30 hours per week as the intervention intensity (1:1); and

    (f)a set of ‘family catch up’ notes (HB37, 2438) dated through 2021, and communication and clinical notes also for dates in 2021 (HB37, 2648, 2651), among other personalised lists and notes.

22. A plan for RQWY’s transition to kindergarten is included in an NDIS ‘Early childhood – Provider report form’ dated 9 June 2022 (5930/T16A, 222) prepared by Ms McKinnon. This is described as a ‘phased support plan’ over an 18-month period, in which 27 hours per week direct intervention is maintained during 2023, with AP supports decreasing to 8-12 hours from support workers in 2024, behavioural consultation remaining at 12 hours per month (decreasing in 2024), and speech therapy reducing to fortnightly interventions. The ‘mainstream inclusion’ component identified for 2023 comprises centre attendance with increased home and community access, as well as kindergarten time. In contrast, the 2022 plan notes ‘some community access (no kinder)’.

23. I also note what appears to be the most recent letter of advice from Dr Joffe, dated 25 August 2022 (HB15, 102-104). This is a lengthy letter that is addressed to a suburban medical practitioner but appears to have been written in support of the Applicant’s NDIS matter. I summarise briefly some key opinions from this letter:

    (a)RQWY’s behavioural therapy has certainly been assisting with ongoing progress and ‘I do not advocate for less than 27 hours a week’;

    (b)Neurodevelopmental assessment shows the Applicant meets the criteria for early onset ADHD and a trial of Ritalin was commenced;

    (c)the practical and ethical issues associated with randomised control trials makes their use in evaluation of behavioural therapy problematic;

    (d)individual therapy in a single partnership organisation will continue to have major benefits for RQWY as the Applicant is empirically showing progress and they thrive on routine; and

    (e)studies show that most gains from intensive behavioural therapy arise with high levels of intervention (30-40 hours per week), ‘however, the evidence is as thus insufficient to provide a general recommendation that all children with ASD require this level of intervention’.

24. A copy of the CRC draft guidelines was lodged (HB34) and this document is entitled ‘Draft Guideline for public consultation’ released in mid-2022, by the Autism CRC. I was not otherwise provided with any guidance as to its status, however, I note that the NDIS website now carries a page that appears to provide various related summary documents from the work of the CRC.[2] The website carries a summary section ‘What the evidence shows’ that, in summary, states: the evidence reinforces the role of parents; there is no ‘one size fits all’ approach and no single intervention improves developmental outcomes for all children; there is no consistent evidence to suggest that more intervention leads to better outcomes; there was evidence of positive effects for behavioural interventions (which is one of eight other identified forms of intervention); and, the expertise of a range of clinical practitioners may be beneficial.

    [2] ‘Evidence review: Early interventions for children with autism’ found at Home > About us > Research and evaluation > Early intervention and high volume cohorts.

25. Notwithstanding that the material lodged is a draft of the CRC guidelines, given the use made of this in witness examination, I consider it valuable to set out some of the recommendations. The source of the citations appears to be ‘Section 4: Delivering supports’ (HB34, 2203) which opens with the statement that once supports are selected, delivery requires consideration of who delivers support, its mode of delivery, delivery setting and amount and duration. The statement continues: ‘It is imperative that support recommendations align with the goals of the child and family, and continue to align with their strengths, needs, preferences, and contextual considerations’.

26. In respect of who should participate in delivery, good practice point 47.3 states that parents should be able to determine their level of involvement (HB34, 2204). Good practice point 47.5 states that ‘there is no consistent research evidence from high-quality meta-analyses that one type of person delivering support is likely to lead to the greater improvements’ for a child.

27. In respect of who should receive support, draft Recommendation 52 states that practitioners should support the child and people around the child, or changes to their environment, ‘in whatever combination is likely to lead to the most meaningful and sustained increase’ in learning, participation and wellbeing (HB34, 2210).

28. In respect of settings for the delivery of supports, similarly, draft Recommendation 53 states that practitioners should deliver supports in ‘the setting(s) that are likely to lead to the most meaningful and sustained increase’ in learning etc (HB34, 2212). Again, the draft states that there is no consistent evidence from research indicating that one setting is more likely to lead to greater improvements than another (HB34, 2213).

29. Similar quite broad observations are also made in respect of format of delivery (one-on-one or group setting) in draft Recommendation 54 (HB34, 2214-2215).

30. The area of greatest interest at the hearing was in draft Recommendation 56, in respect of the amount or duration of supports (HB34, 2217). The background statement to this part of the draft states in part: ‘the amount and duration of support (which determine the intensity) should be determined in collaboration with the child and family, and based on a judgment of the most plausible, practicable, desirable and defensible pathway to achieving their goal(s)’. I set out here briefly the specific good practice points (HB34, 2217-2218):

    (a)56.1 – amount and duration should be tailored to the individual needs of the child and family;

    (b)56.2 – practitioners should inform parents there is no set number of hours that ‘leads to the best outcomes for all children’;

    (c)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’;

    (d)56.4 – the decision-making framework should consider plausible reasons for the amount and duration, its practicality given the child and family schedule, and the wellbeing, support and financial resources available, and its desirability in light of customs and culture;

    (e)56.5 – amount and duration should take into consideration the child’s right to education, and for relaxation and leisure;

    (f)56.6 – amount and duration should not impinge upon the natural roles of other family members;

    (g)56.7 – parents should be given options for the amount and duration of supports; and

    (h)56.8/56.9 – practitioners should be aware of concerns among members of the autism community that supports delivered in large amounts and/or high intensities and also in insufficient amounts can have a detrimental effect.

31. Draft Recommendation 57 (HB34, 2219) states that practitioners should coordinate supports with other relevant service providers and systems.

1. I understand the report described in evidence as Roberts and Williams (2016) to be the one cited a number of times in AP reports, and included as an annex to the report of Dr Leif (HB18, 503): ‘Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers’, February 2016, and described as funded by the NDIA.

2. I note that the ‘AAT precedent’ referenced in the evidence of Dr McDowell are Tribunal decisions cited in the ASFIC ([63]). FRCT and National Disability Insurance Agency [2019] AATA 1478 (FRCT) and WKZQ and National Disability Insurance Agency [2019] AATA 1480 (WKZQ) dealt with the question of whether ABA therapy represented value for money and issues of best practice, in respect of twin brothers. In these matters, the dispute was in relation to a decision of the NDIA that requested supports of 20 hours per week ABA and four hours per week of intensive speech pathology were not reasonable and necessary (FRCT [4]).

3. A substantial amount of expert evidence was considered in those decisions, including Roberts and Williams (2016), National Guidelines produced by Early Childhood Intervention Australia (a national peak body now known as Reimagine Australia), and other expert evidence. Noting that these decisions were made in the context of the needs of the specific applicants, the outcome was that the Tribunal determined that 18 hours of ABA therapy (1:1) and two hours of speech therapy per week were reasonable and necessary supports.

   Submissions

   Applicant submissions

4. Closing submissions ([1]) note that there is no dispute between the parties with respect to RQWY’s supports assisting in the pursuit of goals (s 34(1)(a)) and facilitating social and economic participation (s 34(1)b)). These submissions cross-reference the ASFIC.

5. With respect to the effective and beneficial criteria (s 34(1)(d)), it is contended:

   (a)the parent’s evidence attests to the benefits of the program, was not challenged by Dr McDowell, and much of RQWY’s progress has been in the areas of communication and socialisation, reflecting Dr McDowell’s emphasis on capacity for relationships ([3]);

   (b)while Ms McKinnon was open about the Applicant’s progress being difficult in year one, the material lodged (for example HB37) documents progress made ([4]-[5]);

   (c)Ms McKinnon’s recommendations were based on her clinical judgment and assessment of the home environment, and was not simply based on AP offerings, moreover there is nothing illogical in concluding such a level of therapy is likely to be effective and beneficial ([6]);

   (d)Dr Sandbank acknowledged in evidence that a recommendation as to intensity was ultimately a matter for case-by-case assessment, which is consistent with good practice point 56.2 of the CRC draft guidelines ([8]);

   (e)Dr Sandbank’s evidence concerning US legislation did not address thoroughly the notion of a naturalistic setting, in any event there are naturalistic elements to the AP delivery environment ([9]);

   (f)Dr McDowell accepted family circumstances may have a major bearing on recommendations, and this situation is described in the Statement of Lived Experience and was taken into account by AP ([11]);

   (g)Dr McDowell’s concerns about centre-based intervention were impressionistic and not necessarily informed by an understanding of the delivery context of the program, and in circumstances where there is substantial time out of that context for formation of relationships ([12]);

   (h)Dr McDowell emphasised family empowerment in his reports and involvement of a paediatrician, both of which are features of the evidence in this matter ([13], [14], [16]);

   (i)the failure of Dr Joffe to appear may affect the weight to be given his evidence, but not result in its rejection, noting also that he did not specifically recommend the program ([15]); and

   (j)while Dr McDowell considered RQWY’s speech development slow, this had in fact been addressed in AP reports and by Ms Marussinszky ([17]).

6. With respect to the value for money criteria (s 34(1)(c)), it is contended:

   (a)the cost of the program reflects the number of hours of therapy, and hourly rates largely reflect those in published NDIS pricing guidance ([19]);

   (b)the Applicant relies upon the cost benefit analysis in Dr Leif’s report which it is submitted were not substantially rebutted by Dr Sandbank’s evidence ([21]); and

   (c)the evidence demonstrates that the parents could not enrol RQWY in an alternative program and for such a program to be considered a ‘comparable support’ under r 3.1(a) of the Support Rules, it must actually be available, nor did the Respondent contend that interventions prior to enrolling at AP were comparable supports ([22]-[24]).

7. With respect to taking account of what it is reasonable for family or community to provide (s 34(1)(e)), and whether supports are most appropriately funded by the NDIS (s 34(1)(f)), it is contended:

   (a)the program is not a mainstream childcare setting, and the Applicant’s progress is subject to detailed notes and clinical assessment ([28]-[29]);

   (b)RQWY cannot attend mainstream childcare due to communication and behaviour issues leading to the need for specialist intervention ([30]);

   (c)the KIS program does not provide 1:1 care ([31]); and

   (d)the program provides weekly speech pathology and capacity building for the parents to continue to support therapies at home ([32]-[33]).

8. It is submitted, ultimately, that the correct and preferable decision is to set aside the decision under review and substitute it with a decision that the Respondent approve $164,324.72 per year for plan-managed Capacity Building Supports in a new 12-month plan.

   Respondent submissions

9. It is first contended that limited weight should be given to the lived experience of the Applicant’s parents ([1]) because:

   (a)it has no comparator, gains made cannot be clearly attributed to the program, particularly in light of the expert evidence, and there is a lack of independent corroborative evidence ([2]); and

   (b)notwithstanding a severe developmental disability, there is no evidence supporting the view that RQWY requires constant and continuous 1:1 supervision and so cannot attend mainstream childcare ([3]-[4]), noting that:

   (i)he receives at least 6 hours 1:2 care in the program;

   (ii)his parents attempted to enrol the Applicant in a program that is based on group therapy;

   (iii)he does not receive this level of attention when at home; and

   (iv)none of the medical reports from the Applicant’s treaters refer to 1:1 care.

10. Due to the failure of Dr Joffe to respond to summonses, it is contended that the views of other witnesses should be preferred where there is any dispute or inconsistency ([5]). It is also contended that limited weight should be afforded AP witnesses, including Ms McKinnon, because AP will benefit from any funding sought in this matter. ([6]).

11. In respect of Dr Joffe, the AP reports, and Ms McKinnon, the Respondent otherwise contends ([7]) that:

    (a)ABA was not mentioned by Dr Joffe when first diagnosing ASD Level 2;

    (b)there is no evidence the parents sought to implement any of the recommended interventions, but rather made inquiries with other centre-based programs;

    (c)it appears in December 2020 Ms McKinnon recommended 27 hours per week 1:1 therapy plus 12 hours of associated consultation, despite referring to the Roberts and Williams 2016 report that recommends ‘at least’ 20 hours per week EIBI (noting the report does not say ‘at least’) and without substantiating the recommendation made;

    (d)the AP fee schedule then provided in December 2020 did not include speech pathology, and totalled $154,237.24 when AP was aware the Applicant’s plan provided $24,830.72 for capacity building supports;

    (e)following acceptance into the program, Dr Joffe provided, in knowledge of an appeal to the NDIS, a further report varying his diagnosis and recommending intensive behavioural support;

    (f)RQWY commenced therapy on 1 March 2021 and only at the end of that month was a formal report produced based on clinical assessments (conducted on 2 and 29 March respectively, and noting there are numerous gaps in the Mullen assessment);

    (g)AP staff signed a report on 6 April 2021 effectively recommending RQWY participate in the program, including 1 hour per week speech pathology, with the cost stated as $164,324.72;

    (h)Dr Joffe noted in the Applicant, in December 2021, severe anxiety and deteriorating and regressing behaviour (noting also the red flags identified by Dr McDowell) yet AP reports through 2021-2022 continued to recommend participation in the program; and

    (i)in correspondence provided by Dr Joffe during the proceeding in August 2022, he noted the Applicant’s progress had been slow, and that he needed a multidisciplinary approach, including therapies not provided by AP.

12. Thus, no formal assessment was conducted of RQWY prior to acceptance into the program, and all recommendations by AP were tied to its business default offerings, as opposed to the Applicant’s specific needs, or to the funding actually provided ([8]).

13. The Respondent submit further that Dr Leif is not an independent expert ([9]) for the reasons identified at length in the RSFIC (at [63]-[66]). These include statements in her report characterised as advocacy for ABA, supported by her clinical experience in this area. Further, the Respondent notes that Dr Leif has co-hosted webinars with the Managing Director of AP.

14. It is contended specifically that the program represents a level of therapy well outside current good practice, and that (again) it is fixed to the AP business model ([10]). In relation to the level of intensity being beyond accepted practice, it is contended ([11]) that:

    (a)the Roberts and Williams 2016 report was funded by the NDIS and, relevantly, found that:

    (i)effective programs provide for between 15-25 hours per week, suggesting a midpoint of 20 hours, for at least 1 year;

    (ii)there are notable gaps in the evidence;

    (iii)children diagnosed with autism should receive 20 hours per week early intervention; and

    (iv)programs need to be regularly evaluated;

    (b)this report reflects early attempts by the NDIS to understand appropriate supports and their intensity, and as 7 years have now passed, this report ‘cannot be regarded as the most recent and authoritative report on the subject’ ([12]);

    (c)Dr Sandbank has conducted a comprehensive meta-analysis, concluding that available evidence does not satisfactorily establish that more intensive support is unilaterally more effective, and this was accepted by Dr Leif ([13]-[14]);

    (d)both Dr Sandbank and Dr McDowell noted that high levels of intervention may interfere with a child’ routines, or may not reflect their neurological capacity, and that it may be harmful in a centre-based environment ([15]-[19]);

    (e)the CRC draft guidelines note the need for a child’s right to education and leisure (good practice point 56.5) ([20]); and

    (f)a historical search of AP’s website shows the program has been marketed in the past as 20+ hours, which is consistent with the 2016 report, and Dr Leif’s evidence ([21]-[22]).

15. It is further contended that the booklet for the program demonstrates its structure is fixed, not tailored, and Ms McKinnon’s evidence demonstrated that the vast majority of participants attend the four-day program ([23]-[24]). Moreover, she stated in evidence that she would not recommend therapy levels reflecting the funding made available by the NDIS for RQWY, and AP was prepared to let the Applicant depart the program when funding ran out, as opposed to arranging sessional therapy ([25]).

16. It is submitted that there is no evidence to justify that the non-therapy components of the program are reasonable and necessary, and no justification has been provided for the volume of such meetings and clinical assessments ([26]-[27]). Further, the La Trobe University program is approximately $100,000 cheaper than the AP program (RSFIC, at [120]).

17. With respect to good practice, it is contended further that Dr McDowell made numerous observations in his evidence, including about the quality of assessments conducted by AP, the learning style deployed, the need for speech pathology, and to address the Applicant’s global developmental delay ([29]). Both he and Dr Sandbank also strongly emphasised the need for therapy to be conducted in a naturalistic environment ([30]).

18. Finally, it is also contended that there are available alternatives ([33]), such as:

    (a)sessional therapy provided through AP, in any of a combination of ways;

    (b)attending kindergarten and utilising funding for ABA supports or allied health therapists at home or at kindergarten; and

    (c)support from other providers, including individual speech pathologists, OT, or psychological services as recommended by Dr Joffe.

19. In summary, it is submitted that the program does not satisfy ss 34(1)(c), (d), (e) or (f) and that the current plan includes all funding that is reasonable and necessary, being 18 hours per week of ABA at the set hourly rate, or approximately 8 hours of allied health supports at the set hourly rate, or a combination thereof ([34]).

    consideration

20. No formal submissions have been made by the Respondent with respect to the considerations identified in s 34(1)(a) and (b) of the Act. These are addressed in the ASFIC ([88]-[95]).

21. I have considered the goals typically identified in RQWY’s plans (for example 6115/T1C, 30-32) around communication ability, and engagement and focus, as well as development of personal routines, and behaviour in the community. I am satisfied that in principle the support in question will assist in the pursuit of such goals (s 34(1)(a)).

22. Equally, having considered the medical evidence and other material such as assessments conducted by AP, as well as the evidence of medical experts, I am also satisfied that the support will assist RQWY to undertake activities so as to facilitate his social and economic participation (s 34(1)(b)).

23. Prior to addressing the other factors in the legislation, I consider it helpful to summarise some key aspects of the lay and expert evidence.

24. RQWY was first formally diagnosed with a degree of autism in September 2020, at the age of two and a half years. Prior to this, the parents had facilitated speech pathology via telehealth and attendance at another program. The family approached a number of providers, it would appear, following the recommendation of the paediatrician, Dr Joffe, of a kindergarten environment. I note that publicly available sources indicate that there were some 150 days of lockdown in 2020, and a further three months of lockdown in the second half of 2021. There is no specific evidence describing the nature and extent of RQWY’s periods of illness.

25. Due to Dr Joffe’s non-attendance at the hearing, further evidence was not able to be taken as to the origins of this specific recommendation nor the specific clinical observations supporting it. Nonetheless, other evidence tends to support the view that the personal circumstances of the family appear to have been relevant considerations with the pathway pursued for treatment of RQWY. That is, their work commitments, multi-generational household, and – importantly – the arrival of a third child in November 2020. Given the first child was born as I understand it in 2016, at this time the family had three children under five.

26. Subject to the submission made by the Respondent about the weight to be attributed to the statement of lived experience of the parents, it does not appear to me that any of the preceding facts are seriously in contention. I apprehend that the Respondent’s submission is to the effect that limited weight be attributed to the parent’s evidence as regards RQWY’s progress in therapy.

27. I accept that a question has been raised also about Dr Joffe’s further diagnosis of Level 3 autism. However, taking into account the evidence as a whole, I consider that all medical opinion is largely in agreement as to RQWY’s diagnosis and needs. That is, the Applicant has a relatively high level of autism, accompanied by other developmental issues, possibly also with anxiety; and has had, and continues to display, relatively substantial issues with communication.

28. I also note the submission of the Respondent about the weight to be attributed to the evidence of Ms McKinnon and Dr Leif. For the reasons I give below as to the thrust of the expert evidence overall, and its impact in these matters, I do not consider it necessary to make any conclusive findings on this issue.

29. RQWY’s intake to the program appears to have commenced with an interview and the notes of this meeting record the fundamental issues noted above with respect to family circumstances. These specific factors were also identified in the evidence provided by Ms McKinnon. It does appear that the administration of formal assessment tools took place some time following registration and the provision of initial recommendations by Ms McKinnon. These evaluations, however, appear only to have confirmed the overall diagnosis which had already been made, and was later substantially supported by Dr McDowell. I note the initial recommendation on internal paperwork was for 25-30 hours, subsequently being documented as 27 hours per week intensive behavioural therapy.

30. RQWY appears not to have initially received a high level of speech pathology due to the unavailability of this support at AP at the time of intake. The Applicant’s progress with therapy, ongoing monitoring and achievement of development goals were not systematically addressed in evidence at the hearing. There was relatively broad evidence as to various interruptions to delivery of therapy, and I have noted the duration of lockdowns. The report of Ms Marussinszky indicates that more input was required for speech development at the end of 2021, and this appears to have coincided with a greater availability of support at AP.

31. I accept that Dr McDowell expressed concerns about the nature of ongoing clinical supervision at AP, and that he considered monitoring to be relatively generalised, and achievement not to be objectively articulated. On the other hand, I am satisfied from the material lodged that support to RQWY was subject to detailed planning and ongoing monitoring, and regular evaluation. It is not clear from the evidence which AP reports may have been developed due to the parents’ need for information arising from their engagement with the NDIA. Nonetheless, there are several comprehensive reports, and, in addition, there are records of what appear to be regular family consultations.

32. In light of the evidence of Dr McDowell concerning the need for overarching coordination of services, I note that the evidence shows that RQWY continued to have routine follow-ups with Dr Joffe, of a kind that Dr McDowell considered appropriate. It may remain an open question as to whether this fully served the purpose of coordination of supports. This is due to Dr Joffe’s absence from the hearing, and also the fact that the parents did not pursue supports outside the program. However, I note from Dr Joffe’s most recent correspondence that he would appear to be satisfied that AP was providing the bulk, if not all, supports.

33. Rather than attempting to make an overall summary of the evidence about behavioural therapy, I will address the areas of consistency, and divergence, in the expert evidence under the remaining legislative considerations.

    Value for money (s 34(1)(c))

34. Dr Sandbank expressed a strong opinion about the reliance upon cost-benefit analysis. This evidence appears to have been given sincerely, but perhaps in ignorance of the language and concepts adopted in r 3.1 which I consider, fairly, to give expression to a form of cost-benefit analysis. For this reason, I do not put particular weight on that part of Dr Sandbank’s evidence.

1. The main contentions for the Respondent are that interventions could have been delivered at AP in a different manner or intensity, that other providers of similar services could have been pursued, and/or that other specialist therapies could have been engaged. I note, in passing only, that the observation is made repeatedly in NDIA documents in this matter (for example 5930/T1D, the internal review decision) that there is a lack of evidence as to whether a lesser intensity of intervention would achieve the same result as that sought. With respect, this seems to be asking the Applicant to demonstrate a negative, by seeking evidence of the impact of a support that was not implemented.

2. As noted above, the parents of RQWY had a clinical recommendation from Dr Joffe that a kindergarten environment was imperative for the Applicant, combined with a recommendation on intake at AP that a high intensity delivered across four days a week was appropriate. Furthermore, the evidence shows that the parents had only managed to identify AP as having available services. On this basis, I consider there is rather more force in the Applicant’s submission that alternative services actually need to be available for them to play a role in overall consideration of this factor.

3. I consider the Respondent’s questioning of the need for non-therapy components in the program to essentially be a contention that these are not value for money. While this issue has been asserted in written submissions and was raised in evidence with Ms McKinnon, I do not consider that I have before me any particularly substantive evidence challenging the relevance of these elements. I have noted above my consideration of RQWY’s notes provided by AP, and other related evidence, and in summary find that: AP provides an appropriately trained and qualified staff; it made detailed and individualised plans for RQWY; there is at least an adequate amount of internal coordination between therapists and supervisors; and, the family was engaged as part of this process on a regular basis.

4. These findings I consider sufficient, in the absence of more detailed evidence about alternative approaches to administration, to justify these non-therapy components. I will turn in the following consideration to the amount and duration of support, and acknowledge that to some extent a finding on the present consideration presupposes certain outcomes in respect of s 34(1)(d). However, for the purposes of the value for money consideration, I find that participation in intensive behavioural therapy in a centre-based delivery mode in the form that Little Learners takes to represent value for money in RQWY’s case.

   Effective and beneficial (s 34(1)(d))

5. The core of the Respondent’s contentions with respect to this consideration, and indeed to its submissions overall, is that the amount and duration of therapy is a function of program structure (as part of the AP business model) rather than RQWY’s needs. More specifically, it is contended that the program is outside the boundaries of good practice. The evidence of Dr Sandbank and Dr McDowell was advanced in support of this line of argument. Their evidence was to the effect, broadly, that the amount and duration of the program is unsupported in the literature and is contrary to good practice, as is the centre-based delivery model.

6. Despite the large amount of the expert material lodged in this matter, I consider that there is in fact substantial agreement in the written and oral evidence, including the draft CRC guidelines, and the summary material available on the NDIA website. There is complete consensus that individual circumstances, including family context, not only matters, it can indeed be a critical factor in deciding the nature and duration of interventions. Despite important distinctions on the question of the duration of therapy, I consider the expert material to be clear that greater intensity is not unilaterally and inherently better for all children with ASD. I consider there also to be consensus on the view that there is no formula (or no certain pathway) to determining in a specific case what a suitable intensity of intervention is (that is, how many hours a child requires). This, too, was the opinion of Dr Joffe in his latest correspondence. This conclusion would appear to follow from two further aspects of the evidence, being that the body of relevant research is inconclusive, and that it may not be possible to determine whether individual gains derive from age and development, or from behavioural interventions.

7. If this were the end of the consideration of expert opinion, and taken to its logical extreme, it might result in a situation where no package of intervention could be justified, and this would be, at the least, impractical. In any event, as noted, there is indeed a division of opinion in this matter about the merit of a high level of intervention. Ms McKinnon considered benefits are demonstrable above 15 hours per week (albeit identifying a very broad band of 15-40 hours), in general, and the RQWY required at least 25 hours per week. Both she and Dr Leif advanced the view, at least in part with support from research characterised by the Respondent as out of date, that supported an intensity up to 25 hours; and Dr Leif cited research that had identified an average intensity of over 30 hours.

8. Noting that Dr Sandbank raised concerns about certain research methodology, her evidence overall was strongly to the effect that virtually no level of intervention could be categorically justified. However, her specific relevant opinion was that 27 hours or more could not be justified from the research, as unilaterally more effective than lower intensity interventions. I consider that the word ‘unilaterally’ to be an important qualification. On the question of specific hours, Dr McDowell referred to what he described as AAT precedent which I summarised at paragraphs 95 and 96 above. While I note this, I consider it important to observe that in matters such as this it is important to determine outcomes based on individual circumstances and the particular evidence given.

9. Both Dr Sandbank and Dr McDowell put in quite clear terms their opposition to centre-based interventions. Dr Sandbank explained the significance of the American legislative context during her evidence, but I was not provided with any specific submissions or material in respect of this evidence. I consider her preference for an approach apparently embodied in a foreign statute to somewhat reduce the weight of her opinion. However, her approach was reflected in the evidence of Dr McDowell, and it is also to be echoed in the draft CRC guidelines. In contrast, Dr Leif was of the opinion that a centre, or kindergarten environment, could be understood as a naturalistic setting. I also note that, despite his passionate opposition to centre-based interventions, Dr McDowell accepted that the home environment can have a major bearing on this issue of the delivery of therapy. He also stated that RQWY had probably made gains in large part due to the program.

10. The Respondent has essentially argued that the evidence that Ms McKinnon’s specific recommendation for the amount and duration of behavioural therapy was independent of the program offering is problematic, if not implausible. Fundamentally, however, there is nothing inappropriate in a service provider applying their clinical and professional expertise to a client’s needs. It is in fact commonplace for OT’s or other therapists to provide reports describing recommended supports in any given NDIA matter. Dr Sandbank also accepted in her evidence that clinical judgment plays a part in determining the intensity of supports, and this too was the evidence of Ms McKinnon.

11. I accept that the draft CRC guidelines and the material on the agency website proffer the view that no set number of hours can be determined, or put more broadly, there is no ‘one size fits all’ approach to interventions. As I noted above, however, such broad guidance is potentially unhelpful when attempting to determine which of two mooted levels of intervention, measured in hours per week, is appropriate in a given child’s situation.

12. As I noted above, I am satisfied that RQWY did indeed receive an individualised recommendation during the intake process. A particular, perhaps critical, element was the wider family context. That is not to say there may not have been shortcomings in the approach taken here. It is of some concern that RQWY appears to have not received an adequate level of support with speech and communication due to the unavailability of supports in 2020. I also note the proposal by AP to reduce the intensity of this therapy in the coming year, which was a particular ‘red flag’ identified by Dr McDowell, and RQWY has throughout been identified as having communication deficits.

13. The Respondent has advanced in this matter a substantive body of new expert evidence which is material requiring considered attention. It plays an important role in decision-making not least because of the terms of r 3.2. Equally, the rules embrace consideration of lived experience. I have noted, further, the agreement of expert witnesses that clinical judgment also plays an important role in deciding the volume of interventions in cases such as this.

14. The opinions of Dr Leif and Ms McKinnon about the ongoing benefit of what might be described as ‘benchmark’ high levels of intervention appear to be somewhat difficult to maintain in the face of the Dr Sandbank’s research and the newly published guidance in the form of the CRC guidelines. These point to there being limited objective evidence for such approaches.

15. However, in this particular case, I am satisfied that the balance of clinical opinions, as identified above in the evidence of Ms McKinnon and Dr McDowell, supported by the lived experience of the Applicant and his parents, is to the effect that the program should be considered effective and beneficial for RQWY.

    Remaining considerations

16. It follows from my findings above that due to the family context in this matter, the provision of the support inherently takes into account what is reasonable to expect the family (and others) to provide (s 34(1)(e)). Rule 3.4 provides that it is normal for parents to provide substantial care, and the evidence demonstrates to my satisfaction that a substantial portion of parenting time was preserved.

17. I have not been provided with any significant material about the nature and scope of other service types, such as supported learning in a kindergarten environment, although I note submissions in the RSFIC ([122]-[125]) on this subject, supported by contentions noted above that the program resembles this kind of learning environment.

18. I note that the matters identified in Schedule 1, and set out above, distinguish circumstances in which a child receives personalised and specific supports, and that the NDIS will be responsible for early intervention for children with disability or developmental delay. In all the circumstances, I consider that these conditions are in fact met in respect of RQWY and find that the support is most appropriately funded by the NDIS.

    decision

19. For the reasons given above, the Tribunal sets aside the decisions under review dated 5 August 2021 and 18 July 2022 and remits them for reconsideration in accordance with the direction that the Little Learners program delivered by Autism Partnerships Australia is a reasonable and necessary support for RQWY.

I certify that the preceding one-hundred and forty-six (146) paragraphs are a true copy of the written reasons for the decision herein of Senior Member Fenwick

.....................[sgd]...................................................

Associate

Dated: 30 January 2023

Date of hearing:

19 and 20 October 2022

Counsel for the Applicant:

Jakub Patela  

Solicitors for the Applicant:

Counsel for the Respondent:

Special Voices, Disability Law and Advocacy

Mark Costello

Solicitors for the Respondent:

Clayton Utz