XVCP and National Disability Insurance Agency
[2024] AATA 2626
•24 July 2024
XVCP and National Disability Insurance Agency [2024] AATA 2626 (24 July 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2022/9705
Re:XVCP
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Member L Proske
Date:24 July 2024
Place:Adelaide
Pursuant to s 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth) the decision under review is set aside and the matter is remitted to the Respondent for reconsideration in accordance with directions that:
The statement of participant supports specifies that the reasonable and necessary supports include:
a) 576 hours of specialised home based assistance for a child
b) 104 hours of individual social skills development
The Supports at (1)(a) will replace XVCP’s existing supports for specialised home based assistance for a child
The management of funding for reasonable and necessary supports is to remain the same as the management for those supports as specified in XVCP’s existing statement of participant supports.
All other reasonable and necessary supports in XVCP’s existing statement of participant supports are to be replicated pro-rata from the date on which the supports at (1) are specified in XVCP’s statement of participant supports until the reassessment date.
The date by which the Respondent must reassess XVCP’s plan is to be 12 months from the date on which the supports at (1) are included in XVCP’s statement of participant supports.
............[sgnd].......................................................
Member L Proske
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – child participant – request for additional funding for support worker assistance – value for money – what is reasonable to expect families to provide – effective and beneficial – decision set aside and remitted to the Respondent for reconsideration
LEGISLATION
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
CASES
Drake and Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409
McGarrigle v National Disability Insurance Agency [2017] FCA 308
SECONDARY MATERIALS
National Disability Insurance Agency, NDIS Operational Guideline – Reasonable and Necessary Supports (6 October 2023) <Reasonable and necessary supports | NDIS>
REASONS FOR DECISION
Member L Proske
24 July 2024
BACKGROUND AND JURISDICTION
The Applicant (XVCP) is 8 years old and lives with his mother (Ms XVCP), father (Mr XVCP) and younger brother. XVCP has been diagnosed with Level 2 autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD).[1] XVCP became a participant of the National Disability Insurance Scheme (NDIS) on 21 September 2021 based on impairments associated with his ASD.[2]
[1] Joint Tender Bundle (Exhibit 2, “E2”), A4, 12; A1, 1.
[2] Respondent’s Statement of Facts, Issues and Contentions 23 April 2024 (R’s SFIC), [8].
On 20 June 2022, the Chief Executive Officer (CEO) of the National Disability Insurance Agency (NDIA) approved a statement of participant supports (SOPS) under XVCP’s plan (original decision).[3] Funded supports in that SOPS totalled $21,251.21.[4] On 11 August 2022, Ms XVCP requested that the original decision be reviewed.[5] On 10 October 2022, a reviewer varied the original decision (internal review decision).[6]
[3] T-Documents (Exhibit 1 “E1”), T12, 58.
[4] E1, T12, 68.
[5] E1, T10, 54. This request was made under s 100(2).
[6] E1, T1A, 6-13. This internal review decision was made under s 100(6).
On 23 November 2022, Ms XVCP made an application to the Tribunal for review of the internal review decision; and an application to extend the time for the making of that application for review.[7] Pursuant to s 29(7) of the Administrative Appeals Tribunal Act 1975 (Cth) (AAT Act), the Tribunal extended the time for the making of the application for review to 23 November 2022. The Tribunal has jurisdiction to review the internal review decision under s 103(1) of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act), in combination with s 25 of the AAT Act.[8]
[7] E1, T1, 1-5.
[8] All sections referred to in these reasons for decision, including in the footnotes, are sections of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act), unless otherwise stated.
Since the review application was made, funding for supports in addition to those considered in the internal review decision has been sought; and the Respondent has agreed to include funding for several additional supports in XVCP’s SOPS.[9]
[9] R’s SFIC, [19].
The decision under review has been remitted to the Respondent for reconsideration under s 42D of the AAT Act on 5 occasions, each of which resulted in the decision under review being varied. In accordance with s 42D(3) of the AAT Act, the application is taken to be an application for review of the decision as varied.
XVCP’s most recent plan (which includes funding for each of those additional supports the Respondent has agreed to fund during this review process) was implemented on 22 March 2024 for a 6-month period following a s 42D remittal.[10] Funded supports in XVCP’s most recent SOPS total $46,533.47 for the period 22 March 2024 to 20 September 2024.[11]
[10] R’s SFIC, [20].
[11] A copy of XVCP’s plan for the period 22 March 2024 to 20 September 2024 was filed with the Tribunal by the Respondent on 28 March 2024.
LEGISLATION AND POLICY
A request for additional funding for support worker assistance is the only support which remains in issue between the parties.
Section 32(1) requires that if a person becomes a participant of the NDIS, the CEO must facilitate the preparation of the participant’s plan. Sections 33(1) and 33(2) provide that a participant’s plan must include the participant’s statement of goals and aspirations, and SOPS. In deciding whether or not to approve a SOPS under s 33(2), s 33(5) provides that the CEO must:
(a)have regard to the participant’s statement of goals and aspirations; and
(b)have regard to relevant assessments conducted in relation to the participant; and
(c)be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d)apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e)have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f)have regard to the operation and effectiveness of any previous plans of the participant.
Section 34(1) provides that:
For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
f)the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i)as part of a universal service obligation; or
(ii)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
10. Under s 209(1), the Minister may make rules prescribing certain matters. Section 35(1) provides that the NDIS Rules may make provisions in connection with the funding or provision of reasonable and necessary supports or general supports. Relevant to this review application, the Minister has issued the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (the Rules), which forms part of the legislation. These are an important part of the legislative scheme.[12] Part 3 of the Rules sets out criteria or considerations that the CEO, or the Tribunal on review, is to use in deciding whether they are satisfied as mentioned in s 34(1)(c), (d), (e) and (f) of the NDIS Act; Part 5 of the Rules sets out general criteria for supports in addition to supports that will not be funded or provided; and Schedule 1 to the Rules sets out considerations relating to whether supports are most appropriately funded through the NDIS.
[12] McGarrigle v National Disability Insurance Agency [2017] FCA 308 at [43].
11. Operational Guidelines published on the NDIS website contain information about what the Respondent considers when making decisions under the legislative framework. These are essentially policy documents. The Operational Guidelines, ‘Reasonable and Necessary Supports’ and ‘What principles do we follow to create your plan?’ (the Guidelines), most recently updated on 6 October 2023 and 25 September 2023 respectively, are relevant to this application. The Tribunal will take these into account unless there are cogent reasons not to.[13]
[13] Drake and Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409, 420.
EVIDENCE AND SUBMISSIONS
12. The Respondent filed T-Documents on 13 December 2022 under s 37 of the AAT Act; an agreed joint tender bundle on 3 May 2024; and an amended agreed joint tender bundle on 10 May 2024. The amended agreed joint tender bundle included evidence filed on behalf of XVCP and the Respondent during the review. The T-Documents and the amended agreed joint tender bundle were received into evidence at the commencement of the hearing and marked ‘Exhibit 1’ and ‘Exhibit 2’ respectively. The following documents were also received into evidence:
a)Applicant’s list of authorities (marked ‘Exhibit 3’);
b)A copy of notes prepared by XVCP’s disability advocate for opening submissions (marked ‘Exhibit 4’);
c)Joint Standing Committee on the National Disability Insurance Scheme, Parliament of Australia, Inquiry into the Capability and Culture of the NDIA (Final Report, November 2023) (marked ‘Exhibit 5’);
d)David S Mandell, ‘Understanding and Addressing the Impact of Autism on the Family’ (2012) 17(7) Leonard Davis Institute of Health Economics 1 (marked ‘Exhibit 6’);
e)Joint Standing Committee on the National Disability Insurance Scheme, Parliament of Australia, Inquiry into the Capability and Culture of the NDIA (Final Report, November 2023) Chapter 5 (marked ‘Exhibit 7’);
f)Respondent’s final hearing submissions in relation to cases relied on by the Applicant during opening submissions, 16 May 2024 (marked ‘Exhibit 8’).
13. The hearing was conducted by Microsoft Teams on 13, 16 and 17 May 2024. XVCP was represented by Ms XVCP and a disability advocate, Ms Clancy. Ms XVCP, Mr JD (music therapist), Ms DZ (support worker), Ms LD (behaviour support practitioner) and Ms SB (registered psychologist) gave oral evidence at the hearing.
14. The Respondent filed a Statement of Facts, Issues and Contentions (Respondent’s SFIC) on 23 April 2024. The Applicant’s Reply to the Respondent’s SFIC (Applicant’s Reply) was filed on 7 May 2024. The Applicant filed written closing submissions on 27 May 2024; the Respondent filed written closing submissions on 12 June 2024; and the Applicant filed further written closing submissions on 17 June 2024.
15. The Tribunal has considered all of the abovementioned material. Much of the material before the Tribunal relates to the various supports sought on review. As noted above, all but one of those supports have been resolved between the parties; and a request for additional funding for support worker assistance is the only support which remains in issue. Some material provided in support of those supports which have since been resolved between the parties has given the Tribunal a more fulsome understanding of XVCP. To the extent this is so, that will be referred to below.
Ms XVCP
16. There are several documents before the Tribunal prepared by Ms XVCP. Ms XVCP also provided oral evidence at the hearing. A broad summary of Ms XVCP’s evidence is detailed below.
17. Ms and Mr XVCP are both migrants, have no extended family in Australia and work full-time.[14] Ms XVCP is the primary carer for both XVCP and his brother.[15]
[14] E1, T6, 34; E2, A15, 74; Transcript of Proceedings (Transcript), 48 [22-26]
[15] E2, A15, 74.
18. XVCP’s brother is non-verbal and has been diagnosed with Level 3 ASD, severe intellectual disability and severe global developmental delay; and is also a NDIS participant.[16] XVCP’s brother has no self-care skills.[17] He engages in self-injurious behaviours, exhibits challenging behaviours, has a tendency to ingest non-edibles and has a history of absconding.[18] XVCP’s brother requires a very restricted diet due to extreme constipation and gut issues.[19] He is not toilet trained; needs to sit on a potty for 40 minutes to an hour after dinner due to constipation; and if left unsupervised on the potty will at times apply faeces to himself, furniture and walls.[20] XVCP’s emotional dysregulation often triggers his brother.[21] XVCP’s brother’s NDIS SOPS includes funding for 5 hours support worker assistance per weekday; which Ms XVCP sees as a ‘significant underfunded scenario’.[22] That is usually used as 1.5 to 2 hours in the morning, 2 to 2.5 hours in the afternoon, and the remaining hours are utilised over the weekend.[23]
[16] E1, T6, 34; E2, A15, 74; A40, 315-316; Transcript, 54 [41-44].
[17] E2, A15, 75, 76; A34, 178; A40, 316.
[18] E2, A40, 316; Transcript, 55 [20-39], 56 [5-9].
[19] E2, A15, 78; Transcript, 44 [41-44], 55 [6-11].
[20] Transcript, 55 [3-6], [41-47]; 92 [1-4].
[21] E2, A15, 76; A34, 179.
[22] Transcript, 79 [27-32].
[23] Transcript, 79 [44-47]-80 [1-7]
19. Mr XVCP has a very stressful job, works long hours, has medical issues (insulin dependent type 1 diabetes), self-care and sensory issues, and difficulties with self-regulating.[24] Each year Mr XVCP has a few episodes of hypoglycaemia, which can require emergency treatment.[25] Although undiagnosed, Ms XVCP believes Mr XVCP is on the autism spectrum.[26] He has little involvement in the daily running of the household due to his long working hours, underlying heath issues and self-regulation difficulties.[27] Since the pandemic, Mr XVCP has removed himself from the house to the garage for the majority of time, including meals; and has been unable to take XVCP or his brother to therapies.[28] When asked whether she thought Mr XVCP does not want to help out with XVCP and his brother, or is prevented from doing so by his commitments, Ms XVCP responded ‘I think it’s both’.[29] Ms XVCP thinks Mr XVCP sometimes uses his work as an excuse to withdraw.[30] During cross-examination, Ms XVCP conceded that Mr XVCP will sometimes provide support on weekends; and gave evidence to the effect that she cannot force Mr XVCP to provide more support.[31]
[24] E1, T6, 35; E2, A15, 74, A28, 152, A34, 177; A40, 324; Transcript, 48 [34-39], 75 [14-15].
[25] E2, A28, 152; A40, 325.
[26] E2, A40, 325; Transcript, 48 [34-35], 74 [
[27] E2, A15, 74; A28, 152.
[28] E1, T6, 35; E2, A15, 74 [18-31].
[29] Transcript, 75 [11-12].
[30] Transcript, 48 [37-39].
[31] Transcript, 76 [1-7].
20. With respect to feeding, XVCP is highly sensitive to textures and smells.[32] It can take 1 to 2 hours to feed XVCP dinner due to texture and taste sensitivity; he is reluctant to feed himself; and cannot eat with others due to the ‘strong smell’ of their food.[33] He has a very limited diet, will often not finish his meal and is extremely allergic to nuts and eggs.[34] Ms XVCP finds XVCP’s mealtime traumatic.[35]
[32] E2, A15, 76, 78; A34, 181.
[33] E1, T6, 34; E2, A15, 76; A16, 92; Transcript, 92 [25-28]
[34] E2, A15, 76, 78.
[35] E2, A15, 76.
21. With respect to self-care, XVCP is highly sensitive to water.[36] In the shower, XVCP wears goggles and covers his face with a cloth, as he is extremely disturbed by water getting onto his face and into his eyes; although as at May 2024 he was able to tolerate washing his hair in the shower, without it needing to be a separate process.[37] XVCP needs assistance to wipe after toileting.[38] With respect to dressing, XVCP finds buttons, shoelaces and some zippers difficult.[39] He can fasten Velcro and put on socks.[40] He requires significant assistance with hygiene, including washing his face and hands; although as at May 2024, he was able to brush his teeth independently.[41] XVCP is highly impulsive, has little safety awareness and regularly absconds, so requires close supervision.[42]
[36] E1, T6, 34; E2, A15, 77; A34, 180.
[37] E2, A15, 77; A34, 180; A40, 302; Transcript, 56 [20-22].
[38] E2, A15, 77; A34, 180; A40, 302; Transcript, 91 [23-26].
[39] E2, A15, 77, 79; A34, 180; A40, 302; Transcript, 56 [19-21].
[40] E2, A40, 302.
[41] E2, A15, 77; A34, 180; A40, 302.
[42] E2, A15, 79; A40, 312; Transcript, 56 [23-29]; 137 [35-47]
22. XVCP has significant challenges regulating his mood, at times having meltdowns for hours during which he can become violent.[43] These meltdowns can occur a dozen times a day, if not more.[44] These can be triggered by him making a mistake or things not going his way.[45] XVCP will sometimes become angry and violent when his brother gets attention and he does not.[46] His trigger/tolerance threshold is quite low.[47] XVCP is easily influenced by other children, and will sometimes replicate their physical and verbal aggression at home.[48] XVCP is negative and miserable; and he has occasionally indicated that he thinks it may be best if he finishes this life and restarts in the underworld.[49]
[43] E1, T6, 34; E2, A15, 76, 78; A34, 179; Transcript, 53 [42-44]
[44] E2, A15, 76; A34, 179; Transcript, 137 [9-21]
[45] E2, A15, 76, 79; A34, 179.
[46] E2, A15, 81.
[47] E2, A15, 79; A34, 182.
[48] E2, A15, 80.
[49] E2, A15, 80, 81; Transcript, 54 [8-13].
23. XVCP has difficulty making friends.[50] He often feels inferior to his peers.[51] He does not know how to engage with children his age; and struggles with group activities.[52] He was enrolled in an after-school robotics class, however ‘he was literally thrown out of that class’.[53] He was similarly denied ongoing enrolment in a public speaking course and a soccer team due to behavioural issues.[54]
[50] E2, A34, 182; Transcript, 54 [19-24].
[51] E2, A34, 183.
[52] E2, A34, 184; Transcript, 54 [24-28].
[53] Transcript, 121 [18-23]; 131 [10-14].
[54] Transcript, 51 [21-28]; 131 [10-16]
24. The extraordinary level of stress and high needs of XVCP and his brother have come at a cost to Ms XVCP‘s physical and mental health.[55] She is sleep deprived; and has suffered several injuries due to XVCP’s and his brother’s sensory seeking behaviours.[56] In a document dated 30 January 2023, Ms XVCP stated:
‘It is important not to underestimate the compounded impact from a family with both children heavily autistic compared to a family with a single autistic child … the demand on a single carer to deal with the highly compounded needs is phenomenal.’[57]
[55] E2, A15, 83; A40, 295; Transcript, 47 [25-39]
[56] E2, A15, 83; A28, 152; Transcript, 47 [4], [25-39].
[57] E2, A16, 92.
25. Whilst Ms XVCP’s commitment to provide the best possible care for her sons remains steadfast, the relentless demands of caregiving, her health issues, and the absence of a local support network have resulted in carer burnout.[58] She summarised her life as ‘complete darkness with no light … no joy, happiness, just hardships and misery’.[59] She has engaged a psychologist to help manage her stress and support her wellbeing, however there remain limits to her capacity to support XVCP and his brother.[60]
[58] E2, A31, 167-168; A40, 285-286.
[59] Transcript, 45 [45-47].
[60] E2, A31, 168.
26. XVCP’s current SOPS contains funding for 5 hours per week of support worker assistance, which is not enough.[61] The 5 hours of support worker assistance in XVCP’s SOPS is utilised on an ad hoc basis, usually as a single 2 to 3 hour shift per week; with any remaining hours utilised for respite, unplanned events or banked for use during school holidays.[62]
[61] E2, A15, 86; A16, 92; A28, 154.
[62] Transcript, 64 [34-40].
27. Ms XVCP has at various points in time particularised the support sought as follows:
a)May 2022 – 15 hours each week Monday to Friday (3 hours each weekday);[63]
b)January 2023 – 3 hours each weekday for 48 weeks;[64]
c)June 2023 – 25 hours each week (5 hours each weekday);[65]
d)September 2023 – 3 hours each day, 7 days a week;[66]
e)May 2024 – 25 hours each week as recommended and particularised by Ms AP;[67]
f)June 2024 – 25 hours each week, to be used flexibly across the week.[68]
[63] E1, T6, 36.
[64] E2, A15, 86; A16, 91.
[65] E2, A28, 149.
[66] E2, A35, 201.
[67] E2, A39, 262, 264.
[68] Transcript, 11 [33-37]; 13 [42-43]; 14 [1-2].
28. In June 2023, Ms XVCP indicated 25 hours of support worker assistance each week would involve 1.5 to 2 hours to assist XVCP with his morning routine; and 3 to 3.5 hours to assist XVCP with his afternoon/evening routine.[69] The afternoon assistance would commence immediately after school on days when XVCP has no therapy; and later in the afternoon on days when XVCP has therapy.[70] In February 2024 and May 2024, Ms XVCP indicated that she was seeking funding for support worker hours to be used flexibly across different subcategories of services and at different times of the day, including on weekends and public holidays, as recommended and particularised by Ms AP.[71]
[69] E2, A28, 155.
[70] E2, A28, 155.
[71] E2, A31, 166; A39, 264; A40, 293.
29. At the hearing, Ms XVCP gave evidence that the requested 25 hours a week would ‘probably’ be used across the week, including weekends; is required in the mornings for approximately 1.5 hours; may be utilised once a week to check in on XVCP at school; and would be used after school, likely in 3 hours shifts, to take place somewhere between 3pm and 9pm.[72] Later in the hearing, she suggested she may use the requested support worker hours in the morning or the afternoon, or sometimes it may be that a support worker attends all afternoon and into the evening.[73] With respect to the support worker support being sought for community access, Ms XVCP gave oral evidence that this would be utilised to support XVCP’s participation in both a soccer program and a music program.[74] The soccer program involves 2 after school training sessions per week; and a soccer match on Saturdays.[75] Ms XVCP understood that the soccer season likely ran over 2 school semesters.[76] The music program involves after school rehearsals and morning tuition.[77]
[72] Transcript, 65 [12-16], 66 [18], 66 [18-27], 68 [12-13]; 115 [7-9]
[73] Transcript, 95 [5-11]
[74] Transcript, 131 [22-43]; 134 [13-22]
[75] Transcript, 131 [40-43]
[76] Transcript, 131 [45-47].
[77] Transcript, 134 [34-38]
30. As to the type of assistance the requested support worker would provide, Ms XVCP’s evidence over time has suggested they would supervise XVCP; keep XVCP away from hazards; prevent XVCP from accessing unhealthy snacks or allergenic foods; keep XVCP away from stimuli that triggers problem behaviours; prevent or control problem behaviours; set positive behavioural models and language; assist with feeding and other self-care activities; and implement therapeutic strategies.[78] The tasks with which a support worker would assist include daily routines and community participation.[79] With respect to community participation, Ms XVCP has indicated it would be beneficial for XVCP to engage in group activities such as music bands and sports teams, and that such participation is dependent upon a support worker being available to support him.[80] Ms XVCP has also stated that the requested support worker assistance is 1:1 not 1:2 as it is not practical for a support worker to support XVCP and his brother at the same time, as they have different disabilities and needs, and their development and cognitive abilities vary.[81]
[78] E2, A28, 154; A39, 270, 273; A40, 298, 313; Transcript, 50 [19-24], 57 [5-7]
[79] E2, A40, 284, 298; Transcript, 50 [18-23], 66 [12-17]
[80] E2, A40, 284; Transcript, 51 [18-44].
[81] E2, A28, 153; A40, 327; Transcript, 98 [14-35]; 125 [28-40]
31. With respect to the expected outcomes to be achieved by funding the requested support, in written evidence over time Ms XVCP has suggested it would ensure XVCP’s safety; improve his self-awareness and self-regulation skills; improve his eating and the variety of foods he consumes; increase his independence; ensure skills taught in therapy settings are effectively transferred and maintained across different settings; maintain a safe and structured environment; and address risks posed to XVCP’s family such as carer burnout, family functionality and longevity.[82] Ms XVCP has also suggested the requested support would enable XVCP to develop a better daily routine; build rapport and trust in the support worker; access therapy away from home; foster social skills; and contribute to personal development.[83]
[82] E1, T6, 37; E2A15, 86; A16, 91-92; A28, 153-15; A39, 270-271; A40, 316, 329; Transcript, 50 [21-24]
[83] E2, A28, 155.
32. The family’s weekly schedule is somewhat unclear. On several occasions in oral evidence, Ms XVCP referred the Tribunal to a weekly schedule in evidence, however consistently conceded that the document was dated, with the schedule having moved with time.[84] Her evidence regarding the family’s morning and afternoon routine on weekdays was broadly to the effect that:
a)With respect to XVCP’s brother, his waking time varies, but is usually around 5:00am to 6:00am.[85] A support worker usually attends to XVCP’s brother between 7:00am to 9:00am, however the time varies subject to support worker availability.[86] XVCP’s brother attends intensive Applied Behaviour Analysis (ABA) Monday to Thursday and has home therapies on Fridays; his intensive therapies finish around 4:00pm.[87] XVCP’s brother usually eats dinner around 5:00pm and that process takes approximately 30 minutes.[88] After dinner he needs to be supervised on the potty, which can take 40 minutes to 1 hour, depending on whether he requires an enema.[89] A support worker usually attends to XVCP’s brother from approximately 5:00pm or 6:00pm to 8:00pm.[90] The evening routine for XVCP’s brother starts around 8:00pm-8:30pm, which involves brushing his teeth, washing his face and changing his nappy.[91] Ms XVCP tries to have XVCP’s brother settled in bed by 9:00pm.[92] He will fall asleep between 9:00pm and 12:00pm; and it is not unusual for him to wake during the night for 3 to 4 hours.[93] An adult has to be in bed with him to pat him back to sleep.[94] Despite trialling medication, XVCP’s brother’s sleep has not improved.[95]
b)With respect to XVCP, he usually wakes between 7:00am and 7:45am; he leaves for school at 8:45am; and school commences at 9:00am.[96] He requires help to get ready and eat breakfast; and often exhibits behavioural issues.[97] Ms XVCP needs to get herself ready for work, whilst also assisting XVCP with his morning routine.[98] Sometimes Ms XVCP will take XVCP to school; whilst at other times Mr XVCP take him to school.[99] XVCP’s school day ends at 3:00pm.[100] He often has therapies after school; however, on days when he does not have therapies after school, he is with Ms XVCP and will watch TV, use his iPad, or read books until it is time for him to have dinner.[101] Ms XVCP will usually commence feeding XVCP dinner sometime between 5:30pm and 6:00pm, whilst at the same time supervising XVCP’s brother on the potty.[102] Feeding XVCP will take at least 40 minutes, but can take well over an hour, during which time there will be lots of arguing, threatening and meltdowns.[103] Between dinner and bed, XVCP might kick a soccer ball, be encouraged to do homework, watch TV or read a book.[104] Ms XVCP tries to settle XVCP for bed after his brother has settled, which will usually be somewhere between 9:00pm and 9:45pm, however he can take up to an hour to fall asleep.[105]
[84] E2, A29, 158; Transcript, 50 [36-43]; 51 [2-4]; 72, [44-47]; 73 [1]; 73 [34-41]; 84 [36-38]; 114 [40-46]; 116 [2-9]
[85] Transcript, 117 [29-32].
[86] Transcript, 117 [44-46]; 130 [30-32].
[87] Transcript, 120 [16-24]; 127 [46-47]
[88] Transcript, 83 [12-19].
[89] Transcript, 83 [21-31]; 84 [40-43]; 92 [20-24]; 115 [32-34]
[90] Transcript, 84 [43-47]; 91 [1-5]; 130 [35-38]
[91] E2, A15, 75; A34, 178.
[92] Transcript, 81 [23-25]; 92 [36-38].
[93] E2, A15, 75; A34, 178.
[94] E2, A15, 75; A34, 178.
[95] E2, A15, 75; A34, 178.
[96] Transcript, 122 [20-25]; 124 [31].
[97] Transcript, 122 [44-45]; 123 [23-29]
[98] Transcript, 118 [22-30]
[99] Transcript, 122 [27-37]
[100] Transcript, 115 [16-17]
[101] Transcript, 89 [5-14];
[102] Transcript, 89 [18-26]; 90 [32-36].
[103] Transcript, 92 [25-28].
[104] Transcript, 93 [4-29].
[105] Transcript, 92 [35-44].
33. With respect to the family’s weekend schedule, Ms XVCP’s evidence was broadly to the effect that XVCP’s brother has a support worker on Saturday mornings and afternoons, and subject to availability, Sunday mornings and afternoons.[106] He has a therapy session with his occupational therapist on Saturdays.[107] Both XVCP and his brother attend a place which is like a gym on a Saturday or Sunday.[108] Mr XVCP transports Ms XVCP and the boys to that event; and during the event Ms XVCP may do some shopping.[109] On Sunday mornings Ms XVCP takes the boys to a local temple.[110]
[106] Transcript, 121 [6-10] 130 [42-47]-131 [1-2].
[107] Transcript, 121 [31-34].
[108] Transcript, 120-121 [42-2]
[109] Transcript, 121 [2-5].
[110] Transcript, 121 [10-12].
34. Ms XVCP was asked several questions at the hearing, to ascertain what an average working week looked like for both her and Mr XVCP. Her evidence was broadly to the effect that:
a)With respect to her own employment, she could not say exactly how many days a week she works from home; she may work from home approximately 2.5 days per week; her job is a serious one and when she does work from home it is not a holiday.[111] Her work hours are generally from 8:30am to 5:00pm Monday to Friday; however outside of core hours there is some flexibility.[112]
b)With respect to Mr XVCP’s employment, he leaves for the office between 7:00am and 8:30am, and arrives home after 7:30pm.[113] He works a maximum of 1 day a week from home; and his workday does not end when he arrives home as he will often work into the night and on weekends.[114]
[111] Transcript, 70 [35-42]
[112] Transcript, 68 [32-47].
[113] Transcript, 78 [9-16].
[114] Transcript, 78 [24-30], 87 [12-21].
AP, Behaviour Support Practitioner
35. Ms AP, a behaviour support practitioner, prepared a Behaviour Support Progress Report in relation to XVCP dated 1 March 2023.[115] The Overt Behaviour Scale completed by Ms AP indicated that XVCP’s behaviours of concern included extreme verbal aggression; severe physical aggression; severe inappropriate social behaviour; moderate wandering/absconding; and severe lack of initiation.[116] Ms AP indicated that initial assessment had shown a trajectory of increasing severity in behaviours of concern and a high risk of worsening social outcomes.[117]
[115] E2, A23, 128-136.
[116] E2, A23, 129-130.
[117] E2, A23, 129.
36. Ms AP reported that during the week, XVCP’s parents are unable to provide XVCP with the support necessary to enable optimal improvement and progress towards independence; and as such a NDIS funded support worker is essential to assist XVCP with achieving his goals and progressing his skills and development.[118] Ms AP also reported that XVCP’s parents are at risk of burnout; and that if XVCP’s behaviours of concern continue to escalate, there is a risk that his parents may be unable to continue caring for him long term.[119]
[118] E2, A23, 135.
[119] E2, A23, 129.
37. With respect to support worker assistance, Ms AP stated XVCP requires 1:1 support to build his capacity in managing his emotional needs and to develop independence in self-care skills;[120] and recommended 1,320 hours over a 12-month period, broken down as 10 hours per week x 52 weeks (i.e. 520 hours over a 12 month plan) assistance with self-care activities – standard – weekday daytime; 3 hours per day x 180 (school) days (i.e. 540 hours over a 12 month plan) assistance with self-care activities – standard – weekday evening; and 5 hours per week x 52 weeks (i.e. 260 hours over a 12 month plan) access community social and recreational activities – standard – Saturday.[121]
[120] E2, A23, 134.
[121] E2, A23, 135.
LD, Behaviour Support Practitioner
38. Ms LD is XVCP’s current behaviour support practitioner. Ms LD also prepared an Interim Behaviour Support Plan (IBSP) dated 7 May 2024 for the period April to October 2024.[122] XVCP’s risks of harm were identified in the IBSP as verbal and physical aggression, property damage, absconding from the family home, wandering away from family when accessing the community, and suicidal ideation.[123] Each of these risks of harm were reported to occur on a daily basis, at a high intensity.[124]
[122] E2, A38, 225-255.
[123] E2, A38, 230-232.
[124] E2, A38, 230-232.
39. In the IBSP, Ms LD recommends funded support workers for both in-home assistance and community access.[125] Ms LD reported that she concurs with Ms AP’s recommendation as outlined at paragraph [37].[126] Ms LD also spoke to the importance of XVCP joining group activities. She recommended 6 hours per week to assist with social and community participation, to support XVCP to participate in a soccer team and music program; which she clarified are included within, not in addition to, her abovementioned recommendation.[127]
[125] E2, A38, 244.
[126] E2, A38, 244.
[127] E2, A38, 245.
40. Ms LD also gave oral evidence at the hearing. She confirmed in oral evidence that she had personally observed XVCP running and absconding from his home,[128] and had completed a modified carers index with Ms XVCP, in which her scores were high.[129]
[128] Transcript, 156 [41-44]
[129] Transcript, 155 [21-24].
41. In cross-examination it was noted Ms LD recommended 2 hours of support worker assistance on weekday mornings for 52 weeks of the year, and 3 hours of support worker assistance on weekday evenings during school term. Ms LD was asked why the recommendation for weekday morning support was not limited to school mornings.[130] She responded:
‘So with these recommendations, to be frank, when I did this, again, it was in a short amount of time. I’m still in the process of actually creating another report with recommendations and updated hours for XVCP’.[131]
[130] Transcript, 165 [29-44].
[131] Transcript, 165-166 [44-3]
42. When asked to clarify whether her response meant the recommendation was a mistake, Ms LD clarified that the recommendations included in the IBSP were proposed by a previous practitioner and included in the IBSP ‘because it was something that we all agreed upon’.[132] She explained that what she meant by ‘agreed upon’ was that the hours were what Ms XVCP said she wanted, and what had also been recommended by the previous practitioner.[133]
[132] Transcript, 166 [5-9].
[133] Transcript, 166 [17-19].
43. When asked during cross-examination why she had recommended 3 hours of support worker assistance on weekday evenings, rather than 2 hours, Ms LD responded that 3 hours seems feasible.[134] She conceded that in recommending 5 hours of support worker assistance each weekday, she would not have given consideration as to how the five hours of support would be implemented in practice; and suggested that was not something she would think about; it would be for Ms XVCP to consider how she wanted to use the hours.[135]
[134] Transcript, 166-167 [43-8].
[135] Transcript, 167 [28-41].
44. It was put to Ms LD during cross-examination that her recommendation in the IBSP regarding support worker hours for social and community participation was uncertain, as she appeared to first recommend 5 hours per week, and later recommend 3 to 6 hours per week.[136] Ms LD conceded that the recommendation will need to be updated.[137] She also gave evidence that she had recommended 5 hours each Saturday for 52 weeks ‘just in case … those games were … to be held on a weekend, including the music band, but, look, he does require at least 3 to 6 hours throughout the week’.[138]
[136] Transcript, 179 [4-25].
[137] Transcript, 179 [25-28].
[138] Transcript, 179 [30-35].
45. With respect to her recommendation that XVCP be funded for support worker assistance to participate in soccer and music programs, Ms LD agreed that Ms XVCP had told her these were things XVCP could do, she thought they would be beneficial to XVCP, and she had been told he enjoyed music therapy.[139] Ms LD further stated that she understood XVCP did not do well in social groups, and 1:1 support would help him integrate into social activities.[140] With respect to whether it may be more optimal for XVCP to slowly integrate into a team environment, as opposed to the recommended soccer and music programs, Ms LD gave evidence that it would depend on the environment, the people, and the supports.[141]
[139] Transcript, 178 [9-15]; 182 [11-19]
[140] Transcript, 182 [21-36].
[141] Transcript, 178 [35-47]
46. Ms LD was asked during cross-examination whether, if XVCP’s SOPS were to include 25 hours per week of support worker assistance and Ms XVCP is the one who makes decisions how to use it, it would concern her that she might use the support in an ad hoc way that suits her in the moment to meet her respite needs rather than thinking through how the support might be utilised to optimise XVCP’s goals.[142] Ms LD’s evidence in relation to this was to the effect that this did not concern her.[143]
[142] Transcript, 170 [27-31].
[143] Transcript, 170 [31-44].
JD, Music Therapist
47. Mr JD has been XVCP’s music therapist since late 2021.[144] Mr JD provides weekly music therapy to XVCP at XVCP’s home on Tuesday afternoons at 5:00pm.[145] In reports dated 8 April 2022 and 3 February 2023, Mr JD stated that XVCP presents with significant difficulties with sensory and emotional regulation resulting in negative behaviours and impaired social relationships.[146] He is easily triggered and becomes defensive when things do not go his way.[147] Asking XVCP to engage in non-preferred activities is especially challenging and this often results in conflict.[148]
[144] Hearing, 17 May, oral evidence.
[145] E2, A25, 140; A40, 284.
[146] E2, A6, 26; A17, 99.
[147] E2, A6, 28-29; A17, 101-102.
[148] E2, A6, 29; A17, 102.
48. Mr JD gave oral evidence at the hearing.[149] In oral evidence, Mr JD discussed his observations of XVCP, which included that he gets frustrated very easily; is easily triggered; and he is quite impulsive. With respect to XVCP’s self-regulation issues, Mr JD said he has improved somewhat over time; however, it depends on the day and he remains unpredictable. During his weekly visits to the family home, Mr JD gave evidence that he has witnessed XVCP hit Ms XVCP quite often; damage instruments and toys; break and tear things; and regularly abscond from the house.
[149] Mr JD evidence referred to hereafter was oral evidence provided at the Hearing on 17 May, for which no transcript was obtained.
49. Mr JD gave evidence that he thought it would assist XVCP to have a support worker who could help him to practise and implement activities and strategies; and take him to therapies outside the home. Mr JD also gave evidence that in session, XVCP has spoken to him about his desire to play soccer and to do other extracurricular activities. He observed that XVCP’s gross motor and core skills are delayed. He stated that whilst XVCP knows how to play soccer, a support worker would be beneficial in that they could help him to navigate the social side of that activity. When asked whether he would be concerned with XVCP being placed into group activities like soccer or a music group, without a staged approach, Mr JD gave evidence that it would depend on the environment and how the activity is facilitated.
KS, Occupational Therapist
50. Ms KS is XVCP’s former occupational therapist. In a report dated 26 July 2022, Ms KS reported that XVCP requires constant supervision and physical support for most of his self-care skills.[150] Ms KS stated that whilst XVCP has the capacity to complete each task, he does not have the cognition to know or understand when he is required to initiate, sequence and execute a task independently.[151] Ms KS noted that Ms XVCP reported that XVCP is an extremely picky eater and it can take over an hour to feed him dinner as he becomes so dysregulated with eating.[152]
[150] E2, A12, 39.
[151] E2, A12, 39.
[152] E2, A12, 43.
51. Ms KS also reported that XVCP presents with poor finger strength and in hand manipulation, which make it difficult for him to engage in some daily living tasks;[153] experiences challenges filtering auditory input which may make it difficult for him to distinguish between the important information he should pay attention to and the information which can be ignored;[154] experiences challenges modulating his sensory input affecting his emotional responses, impacting his ability to self-regulate and to plan and organise himself in activities of daily life;[155] has a mixed response to tactile input, at times seeking it out, frequently showing distress during grooming and is oblivious to his hands or face being messy;[156] and does not appear to have the tools and strategies to independently and successfully acknowledge when a task is difficult and then to ask for assistance, resulting in behavioural issues and meltdowns.[157]
[153] E2, A12, 40.
[154] E2, A12, 42.
[155] E2, A12, 41-43.
[156] E2, A12, 42.
[157] E2, A12, 43.
52. In the abovementioned report, Ms KS recommended a schedule of supports for XVCP’s NDIS plan which included support worker assistance.[158] Ms KS opined that it is essential XVCP receive funding for a support worker for a few hours a day after school; although later in her report the recommendation appears to be a few hours each day.[159] Ms KS explained that Ms XVCP spends most of her time supporting XVCP’s brother who requires more support; and suggested a support worker would enable XVCP to be facilitated in completing a range of daily living functional activities so as to improve his independence.[160]
[158] E2, A12, 45-47.
[159] E2, A12, 46, 47.
[160] E2, A12, 46.
53. The activities Ms KS suggested a support worker would assist with included supporting XVCP to improve his independence in self-care skills; supporting him with being motivated to engage in preferred and non-preferred tasks; facilitating feeding activities to improve his eating and the variety of foods he eats; prompting him to successfully engage in anxiety provoking tasks and situations; grading and scaffolding difficult tasks to enable success; modelling language and scenarios to enable him to improve his sensory processing understanding and regulation techniques; supporting him to participate in community engagement such as playing in the park and meeting new people in order to improve his social interaction; and assisting him with his education around emotional regulations to enable him to become more independent in managing arousal levels.[161]
[161] E2, A12, 46.
54. Ms KS also provided a response to targeted questions on 17 May 2023, in which she stated that XVCP continues to experience delays with his communication and engagement, sensory processing and regulation, as well as aspects of his self-care, and gross motor skills.[162]
[162] E2, A24, 137.
LK, Speech Pathologist
55. Before the Tribunal are 2 reports and a letter prepared by Ms LK, speech pathologist.[163] In reports dated 24 March 2022 and 20 February 2023, Ms LK stated that XVCP is well below average in understanding and using social language, which impacts his behaviour, his successful relationship building, and his independence at home and in the community.[164] Ms LK reported XVCP has poor tolerance and intake of food and drink, which in combination with his poor self-regulation and impulsivity, have a negative impact on family life.[165]
[163] E2, A5, 15-25; A20, 108-122; A27, 146-147.
[164] E2, A5, 22, 23; A20, 118, 119.
[165] E2, A5, 22, 23; A20, 118, 119
56. With respect to self-care, in her report dated 20 February 2023, Ms LK stated that XVCP eats a very restricted variety of foods; has difficulty with the sensory input of foods; and has prolonged mealtimes in excess of 1 hour that often result in aggressive behaviours and cause emotional strain to his family.[166] Ms LK opined that XVCP’s parents are not able to participate in feeding therapy regularly in order to learn and implement strategies, because they work full-time and care for XVCP’s brother.[167] Ms LK recommended support worker assistance to enable XVCP’s parents to participate in sessions with XVCP in order to learn and implement strategies; and to provide support for the family with the afternoon/evening routine.[168]
[166] E2, A20, 117, 119
[167] E2, A20, 117.
[168] E2, A20. 117, 120-121.
57. In a letter dated 16 June 2023, Ms LK clarified that her recommendation for support worker assistance is 14 hours a week (2 hours per day); and that these hours are specifically to support XVCP’s social communication and feeding needs.[169]
[169] E2, A27, 146.
SO, Speech Pathologist
58. Ms SO is a speech pathologist. In a letter dated 8 October 2021, Ms SO reported that XVCP presented with feeding difficulties characterised by delayed oral motor skills, difficulties with mealtime routines and a restricted range of foods accepted.[170] With respect to mealtime routines, Ms SO reported that XVCP sits in the furthest corner to be away from other people who are eating so that he does not have to smell their food; is often fed by Ms XVCP or another family member; tends not to eat if he is not fed by someone; and can take a long time to complete his meal.[171] Ms SO further reported that XVCP is a fussy eater, often refuses food he thinks he will not like, and is highly sensitive to foods which have big smells.
[170] E2, A3, 7.
[171] E2, A3, 6.
AG, Paediatrician
59. In a letter addressed to the Respondent dated 15 July 2022, Dr AG, XVCP’s paediatrician, stated that XVCP has ASD Level 2 with associated sensory sensitivities affecting his feeding, significant communication and language difficulties affecting his communication and ADHD with inattentive and hyperactive features affecting his learning and peer interactions.[172] Dr AG identified priorities for early intervention that included, in addition to capacity building supports, a support worker to assist with behavioural difficulties and routines particularly after school.[173]
[172] E1, T8, 40.
[173] E1, T8, 40.
60. In a letter addressed to the Respondent dated 20 February 2023, Dr AG stated:
‘[XVCP] has particular sensory sensitivities affecting his self-care skills, particularly feeding and washing/showering. He is extremely sensitive to water and is very selective with his foods secondary to a sensitivity to strong tastes, flavours and smells. He has challenging behaviours relat[ing] to following instructions, paying attention and maintaining self-regulation of emotions. Transitions between activities are particularly difficult.’[174]
[174] E2, A19, 106.
61. Dr AG suggested XVCP’s support needs are high due to his co-morbidities and suggested that priorities for his early intervention program include a support worker to enhance community interaction.[175] Dr AG recommended ‘regular support worker hours to enhance independence appropriate for age – accessing community sports / events / public transport / clubs’.[176]
[175] E2, A19, 106-107.
[176] E2, A19, 107.
PH, Clinical Psychologist
62. In a report dated 24 February 2023, Dr PH records XVCP’s developmental and behavioural issues as reported by Ms XVCP, including an inability to regulate emotions, with frequent outbursts of anger; unusual mood or emotional reactions; use of hostile and threatening language; inappropriate language with teachers and peers; difficulty with articulating his needs, leading to frustration; unusual tone and pitch of speech; difficulty with concentration; impulsive and indecisive, overly sensory issues; inappropriate social behaviour; poor judgement and insight towards social situations; gross and fine motor impairment; and avoidance of water, including drinking, showering and swimming.[177] Dr PH also noted Ms XVCP reported XVCP had low self-esteem, often expressed life was not worthwhile and discussed living in the underworld.[178] In a letter dated 19 May 2023, Dr PH provides further information in relation to XVCP’s suicidal impulses.[179]
[177] E2, A22, 125.
[178] E2, A22, 125.
[179] E2, A26, 142-144.
DZ, Support Worker
63. Ms DZ has been a support worker for XVCP since approximately August 2022.[180] She usually supports XVCP after school for 2 to 3 hours, once a week.[181] In a witness statement dated 1 April 2024, Ms DZ states that the support she provides to XVCP includes feeding, safety supervision, homework assistance, self-care guidance, and community engagement.[182] At times when she finishes a shift with XVCP, she senses the family may revert to a state characterised by chaos and desperation.[183] Ms DZ opined that XVCP requires a comprehensive support structure that encompasses assistance before school, after school and during evenings on typical school days; and such support must be scalable during school holidays and difficult periods.[184] She suggested that her current support provides temporary relief by addressing XVCP’s immediate behavioural challenges, but that support worker assistance should be transformed into a more proactive and systematically structured approach.[185]
[180] E2, A33, 174; Hearing, 17 May, oral evidence.
[181] E2, A33, 175; Hearing, 17 May, oral evidence.
[182] E2, A33, 174-175
[183] E2, A33, 176.
[184] E2, A33, 175.
[185] E2, A33, 176.
64. Ms DZ gave oral evidence that what she does with XVCP varies.[186] She helps him with daily routines to keep him feeling safe, and to keep him physically safe. He requires a lot of minding just to keep him safe. She said he has significant issues around feeding. She has never provided XVCP with morning support.
[186] Ms DZ evidence referred to hereafter was oral evidence provided at the Hearing on 17 May, for which no transcript was obtained.
65. During cross-examination, Ms DZ confirmed that she never cares for XVCP and his brother together, and indeed does not consider that she is in any way equipped to provide support worker assistance to XVCP’s brother due to his high needs. When she is with XVCP, XVCP’s brother is sometimes supported by Ms XVCP, and at other times he is supported by a support worker. When XVCP’s brother is supported by a support worker, Ms XVCP is cooking dinner or working. Whilst Ms XVCP does not normally support XVCP contemporaneously with Ms DZ, Ms DZ will call out to her for assistance when XVCP is emotionally dysregulated.
66. Ms DZ gave evidence that in the time she has spent at XVCP’s home, she has never seen Mr XVCP help with XVCP or his brother. There are times when Ms XVCP is really needing extra help, like school holidays. Ms DZ gave evidence that Ms XVCP is ‘stressed out’ and ‘absolutely worn out’.
Psychologists and General Practitioner – LG, FN, Dr GC, PJ
67. Before the Tribunal is a letter dated 31 August 2021 from Ms LG, psychologist.[187] Ms LG stated that Ms XVCP had been referred to her due to symptoms of anxiety, depression and stress.[188] Ms LG concluded that Ms XVCP is under significant stress, in an isolated environment, with minimal support from Mr XVCP and no local extended family.[189] She further concluded that Ms XVCP has been juggling household duties, caring for 2 children with extra support needs, and full-time work. This leaves little time for Ms XVCP’s own self-care or respite and she is experiencing significant mental health concerns.[190]
[187] E2, A2, 2-4.
[188] E2, A2, 2.
[189] E2, A2, 4.
[190] E2, A2, 4.
68. In a letter dated 3 May 2022, Mr FN, a psychologist, stated that Ms XVCP has been caring for her 2 boys with ASD, managing their therapies and working full-time.[191] This has led to years of sleep deprivation and stress, and she has little support at home.[192] He opined that she needs more assistance daily to help with therapies as she is exhausted and stressed.[193]
[191] E1, T4, 30.
[192] E1, T4, 30.
[193] E1, T4, 30.
69. Dr GC, the family’s treating general practitioner, in a letter dated 3 May 2022 recorded that Ms XVCP is under much stress due to her children’s conditions and health.[194] He suggested she is persistently sleep deprived and her health was deteriorating.[195] Dr GC recommended support worker assistance to help the family during what he described as a ‘long term crisis’.[196]
[194] E1, T5, 32.
[195] E1, T5, 32.
[196] E1, T5, 32.
70. Mr PJ, a registered psychologist, provided a letter dated 27 March 2024 regarding Ms XVCP.[197] Mr PJ reported the physical, emotional, and cognitive symptoms Ms XVCP displayed on referral.[198] He noted that Ms XVCP reported experiencing upsetting thoughts, anxiety, internalised shame, repressed anger, headaches and somaticism including nausea; feeling physically and emotionally depleted, flat, angry and irritated; exhibiting low and liable mood with impaired energy, dark thoughts and suicidal ideation; and her sleep is extremely impaired and fragmented, both qualitatively and quantitatively.[199] Mr PJ further reported that the impact of caring for XVCP and his brother has negatively impacted Mr and Ms XVCP’s relationship; and severely limited the family’s social life and ability to holiday.[200]
[197] E2, A32, 169.
[198] E2, A32, 170.
[199] E2, A32, 171.
[200] E2, A32, 172.
71. Mr PJ opined:
‘…it is crucial that the family be given increased ongoing home support and respite as [Ms XVCP’s] circumstances are incredibly stressful and the situation has had a debilitating impact on her mental and physical health.’[201]
[201] E2, A32, 169
72. Mr PJ further opined:
‘The risk of [Ms XVCP] breaking down is real and genuine. She is besieged, fatigued and wearied. Should assistance be inadequate or removed the children would be at serious risk of neglect and harm psychologically and physically. There remains definite serious risk of [Ms XVCP’s] depression worsening and the likelihood of her mental health declining. If her mental health were to deteriorate further the children would be at serious risk of harm and neglect.’[202]
[202] E2, A32, 172.
73. Mr PJ suggested the risk of neglect or harm will be reduced by the provision of increased in-home assistance and community support, respite for the parents, and extra support during school holidays.[203] He further suggested such support would also help to improve the developmental outcomes of the children; improve the psychological and physical wellbeing of the parents; and improve the safety, welfare, health and stability of the family.[204]
[203] E2, A32, 172.
[204] E2, A32, 172.
SB, Registered Psychologist and Behaviour Support Practitioner
74. The Respondent obtained a report from Ms SB. Ms SB has been practising as a registered psychologist for 15 years; and is also an NDIS-endorsed behaviour support practitioner.[205] She gathered information about XVCP’s level of functioning by reading reports and speaking with Ms XVCP, Ms SW (XVCP’s current occupational therapist), Mr JD (music therapist), and Ms KS (school counsellor).[206] The Adaptive Behaviour Assessment System Third Edition (ABAS-3) – Parent and Teacher Forms and the Achenbach Child Behaviour Checklist (CBCL) and Teacher Report Forms (TRF) were also administered.[207] Ms SB’s report dated 14 August 2023 recorded information reported to her by Ms XVCP, Ms SW and Ms KS; and her scoring of the abovementioned ABAS-3, CVCL and TRF.[208]
[205] Transcript, 191 [1-5].
[206] E2, R5, 55.
[207] E2, R5, 55-56.
[208] E2, R5, 57-62.
75. In her report dated 14 August 2023, Ms SB opined that XVCP is experiencing significant difficulties in a variety of areas; and recommended a multi-disciplinary support plan.[209] Relevant to the issue on review, Ms SB noted that XVCP requires help with daily tasks which include eating, bathing, dressing and homework.[210] She opined that XVCP requires most support in the afternoon after school and to complete his evening routine; needing 1:1 support to learn daily living skills, stay on task with routines and homework, and eat his evening meal.[211] Ms SB also reported that the Caregiver Burden Scale was administered with Ms XVCP and her responses indicated she was experiencing severe levels of caregiver burden; impacting her health, marriage and other relationships.[212]
[209] E2, R5, 63-65, 66.
[210] E2, R5, 75.
[211] E2, R5, 75.
[212] E2, R5, 76.
76. Ms SB recommended 480 hours of support worker assistance over a 12-month period (2 hours per weekday for 48 weeks).[213] Ms SB recommended support workers provide in-home afternoon support with regard to eating and building independence on weekdays;[214] and that they implement programs developed by XVCP’s occupational therapist and speech therapist to teach independence in daily living skills and eating, and implement strategies as documented in XVCP’s behaviour support plan.[215].
[213] E2, R5, 65.
[214] E2, R5, 66.
[215] E2, R5, 65.
77. Ms SB suggested that the recommended support worker assistance would increase XVCP’s independence with respect to daily living skills and feeding; improve his health and wellbeing; build capacity in the family; and decrease future burden on the NDIS for such intensive supports.[216] With respect to XVCP’s NDIS goals, Ms SB opined that the recommended support worker assistance would help to improve XVCP’s self-care and emotional skills.[217] Ms SB opined that the support she had recommended would be considered a good level of support for a child XVCP’s age and attending school.[218]
[216] E2, R5, 75.
[217] E2, R5, 65.
[218] E2, R2, 25.
78. Ms SB provided a supplementary report dated 19 April 2024.[219] Ms SB suggested the high level of carer burnout Ms XVCP was experiencing was of concern, and more supports are required.[220] Upon review of documentation provide to her, Ms SB opined that the focus of the reports have been to highlight the need for extra support, which is clearly apparent, however there is a lack of a clear outline as to how the supports will be utilised and implemented to manage risk, build skills and independence, and provide capacity and respite for parents.[221] Ms SB opined that with respect to support worker assistance, the risk of carer burnout is real and must be considered; and suggested extra focus should be on the school holiday period with funding provided for appropriately-resourced school holiday programs for children with special needs and in-home supports during this time.[222] In circumstances where it is expected that support worker hours may vary, depending on daily need, Ms SB could not provide a clear recommendation of number of support worker hours to be funded.[223]
[219] E2, R4, 41.
[220] E2, R4, 50.
[221] E2, R4, 50.
[222] E2, R4, 50.
[223] E2, R4, 50.
79. With respect to funding for a therapy assistant, which appears to have been a suggestion made by the Respondent as opposed to a request made by XVCP, Ms SB opined that considering the time spent in school and XVCP’s already busy therapy timetable, it is unclear how further therapy assistant supports and skill building sessions would not add to fatigue and diminishing gains for a child 8 years of age.[224] She further noted that there is a lack of specific goals and plans regarding how these therapy assistant hours would be used, as well as no indication of monitoring or review of outcomes in this regard.[225] Ms SB recommended that therapy assistant funding should be granted only in response to a specific plan written by an appropriately-qualified allied health professional; and that the same is required for Skill Development funding.[226]
[224] E2, R4, 50.
[225] E2, R4, 50.
[226] E2, R4, 50.
Ms SB gave oral evidence at the hearing. When asked why she had recommended 480 hours of support worker assistance over 12 months, Ms SB explained that she understood what was being sought on review exceeded that, but for her to recommend a high level of support for an 8 year old, she would need to see a clear plan of how that would be implemented, and how the requested hours are going to be used to support XVCP, support the family and not be overwhelming.[227] She further explained this is because XVCP attends school, there are a lot of therapies and a lot of people, considering XVCP’s brother also has high support needs.[228]
[227] Transcript, 194 [19-44]; 197 [12-17].
[228] Transcript, 194 [19-44]; 197 [12-17].
Ms SB was asked whether, if XVCP’s plan allowed 25 hours per week of support worker assistance to be used at Ms XVCP’s discretion, would she have concerns about a plan of that nature in terms of XVCP’s goals being achieved, NDIS money being wasted etc.[229] Ms SB acknowledged reports that spoke to Ms XVCP’s carer burnout and opined that XVCP’s parents do need respite: an extra set of hands to protect their mental health.[230] However, Ms SB stated that in order to ensure the family is supported with the support worker funding, there needs to be a plan that is made in collaboration with the parents on how that support is implemented.[231] Doing this in a planned way, Ms SB opined, is going to have much better outcomes, not just for XVCP, but also for the family as a unit.[232] Ms SB gave oral evidence to the effect that she did not think it would be optimal if Ms XVCP was the sole person responsible for choosing how support worker hours were used.[233] In explaining why this was her view, Ms SB stated:
‘I think on the one hand … mother knows the child best, but on the other hand, there is so much going on for this family. Their children are very complex from what I’ve read. To give that just to one person who is in a difficult situation, takes away the ability for other people that are outside that are well trained and know … research and best practice, and gold standard ways of working … to take that away, then that’s not going to the gold standard plan’.[234]
[229] Transcript, 195 [31-36].
[230] Transcript, 195 [36-46].
[231] Transcript, 196 [10-14].
[232] Transcript, 196 [21-23].
[233] Transcript, 198 [31-36].
[234] Transcript, 198 [35-44],
Ms SB gave evidence that if she were preparing a plan for how support worker hours in XVCP’s SOPS would be used, she would need to know the routines for both XVCP and his brother, given there are 2 sets of high support needs going on at the same time after school, to ensure they are not triggering each other. Keeping in mind what the parents’ needs are, she would also need to know what their routines are, such as work commitments.[235] Ms SB said she would:
‘scoop that altogether with the family, and then put together all the pieces of the puzzle of the therapies, and the goals, and the NDIS, and then, kind of, work in a collaborative way. And that’s … why I think a team is best … placed to put that all together’.[236]
[235] Transcript, 197 [22-29].
[236] Transcript 197 [29-33].
Ms SB agreed in oral evidence with the suggestion that to write a plan of the nature she thinks necessary, she would want to timetable it to optimise caring for XVCP, giving the parents respite, and also building skills and independence.[237]
[237] Transcript, 198 [16-20].
When asked whether, in her opinion, a support worker could support a child with ASD Level 3 and a child with ASD Level 2 simultaneously, Ms SB gave evidence to the effect that she could not make a blanket statement that that would be possible without more information.[238] When asked whether she could see a support worker and a parent co-managing children, Ms SB gave evidence that if a support worker was appropriately trained, and the support worker and parent were tag-teaming or swapping over, she would imagine that a possibility.[239]
[238] Transcript, 199-200 [38-11].
[239] Transcript, 200 [25-30].
At the hearing Ms SB was asked whether, if one parent was reluctant to help out with disabled children, there was something that could be done to change that.[240] Ms SB’s response was ‘Yes, of course. Yes, absolutely.’[241] Ms SB elaborated that there are many reasons why a parent may be disengaged, and from what she had read in relation to XVCP’s family, they were in ‘survival mode’.[242] Ms SB expressed a view that it was about trying to ‘bring the stress levels down in the family, getting out of survival mode and into … therapy mode, and parent mode, and having time, and working on mental health, and having headspace to be able to do that’.[243]
[240] Transcript, 200 [32-34].
[241] Transcript, 200 [37].
[242] Transcript, 200 [38-44].
[243] Transcript, 201 [11-15].
Ms SB was asked whether, in her view, it was premature for Ms LD in the IBSP to assess the number of support worker hours before more details are known, and a more concrete plan is in place.[244] Ms SB gave evidence that she thought that was premature, and in particular suggested that a gap in the IBSP to her mind was information such as ‘who is going to do what when, and so how did we get to those hours, and what are we going to … do with them’.[245] Later in her oral evidence, Ms SB elaborated on this, stating:
‘I don’t know where the plan is to justify those calculations. That’s all. So show me a great plan to be implemented that I think is, you know, based on NDIS goals, great, but that is missing here … how is this going to support this child’s needs? I can’t see that information. It’s like a missing step.’[246]
[244] Transcript, 202 [17-21].
[245] Transcript, 202 [24-30].
[246] Transcript, 212 [20-25].
With respect to Ms LD ‘s recommendation for support worker funding to support XVCP to participate in a soccer program, Ms SB raised concerns that it may, for XVCP, be better to start with something like a one-on-one, or small group where the support worker can plan things, minimise triggers, work on specific social goals, and then work towards something like a sports team.[247] Ms SB’s rational for this suggestion was that from what she had read, XVCP has had some challenging behaviours in team sports; in team sports children are unpredictable; and whilst a support worker could be on a sideline, they could not be on a field supporting XVCP.[248] With respect to Ms LD’s recommendation for support worker funding to support XVCP to participate in a music program, Ms SB stated that if that is a community activity where children are in a band or orchestra, or something such as that, she thought that would be fine in that that would be an easier thing to support for a support worker.[249]
[247] Transcript, 203 [5-19]
[248] Transcript, 203 [5-19].
[249] Transcript, 203 [19-34].
CONSIDERATION
Ms XVCP is seeking to have additional funding for support worker assistance specified in XVCP’s SOPS. As outlined above at paragraph [27], the particulars of that request have moved with time, and going into the hearing there was some confusion around the particulars of the support worker assistance being sought on review.[250]
[250] Transcript, 9 [4-29].
The Tribunal understands from Ms XVCP’s evidence at the hearing that what is broadly being sought is 25 hours of support worker assistance each week, to be used flexibly across the entire week for a combination of assistance with daily activities (home based assistance), and assistance to access community, social and recreational activities (community access support).[251] Whilst Ms DL recently recommended that XVCP be funded for 6 hours each week community access support, she qualified that such hours ‘are included rather than in addition to the above-suggested core support hours’.[252] Further, Ms XVCP clarified at the hearing that she was not seeking funding for 6 hours each week community access support in addition to 25 hours of support worker assistance each week; yet rather she was happy for that 6 hours to be included within the 25 hours of support worker assistance each week that she had already sought.[253]
[251] Transcript, 11 [19-37]; 13 [42-43]; 51 [35-38].
[252] E2, A38, 245.
[253] Transcript, 51 [35-38].
In closing submissions, the Respondent outlined their understanding that XVCP was requesting funding for 25 hours each week of support worker assistance plus an additional 6 hours each week community access support.[254] The Respondent submits that support is not reasonable and necessary;[255] and contends that in lieu of XVCP’s request, the following supports are reasonable and necessary:
a)A support worker support in the total sum of 547.50 hours over 12 months to assist with feeding XVCP (including the provision of any other support worker assistance associated with any attendance on XVCP for the aforementioned purpose) [approx 1.5 hours per day or 2.3 hours per workday];
b)A support worker support in the total sum of 104 hours over 12 months for individual skills development and training to assist with building capacity for social and community participation [2 hours per week at a weekday rate]; and
c)104 hours over 12 months for a therapy assistant (level 2) [2 hours per week].[256]
[254] Respondent’s closing submissions (RCS), [11], [23]
[255] RCS, [127]-[144].
[256] RCS, [145].
The Tribunal and the Respondent both understood that 6 hours each week community access support is being sought on review. The point of difference is that the Tribunal understood this was included within the request for 25 hours of support worker assistance each week (such that the requested home based assistance is 19 hours each week), whereas the Respondent understood this was in addition to that request (such that the requested home based assistance is 25 hours each week). In fairness to parties, and out of an abundance of caution, the Tribunal will consider the requested support as the Tribunal, and the Respondent, each understood it to be.
Ms XVCP contends that the requested support is reasonable and necessary when one considers XVCP’s complex needs;[257] the circumstances of XVCP’s family, which include a range of factors that bear upon Mr XVCP’s and Ms XVCP’s capacity to meet all XVCP’s support needs;[258] and recommendations made by XVCP’s treating practitioners.[259]
[257] E2, A40, 322-323, Applicant’s closing submissions (ACS), 1, 3; Applicant’s reply to the Respondent’s closing submissions (AR), 1
[258] ACS, 1-2, 3; AR, 1-2.
[259] ACS, 3; AR, 2
The Respondent contends 25 hours each week of support worker assistance is not reasonable and necessary when one considers the state of the evidence about the family’s typical routine, the children’s needs, and how it was envisaged a support worker would be utilised; the lack of any properly formulated plan to ensure funding will be used optimally; the lack of proper consideration about the extent that a support worker could (either alone or in conjunction with XVCP’s mother) support both XVCP and his brother; the lack of evidence to enable the Tribunal to be satisfied of the s 34(1)(e) criterion; duplication of support with funding provided for in XVCP’s capacity building budget; and inadequate investigation of alternative supports to support worker funding.[260]
[260] RCS, [52]-[110].
With respect to the request for 6 hours each week of community access support, the Respondent contends this is not reasonable and necessary as the proposed use of the support has not been properly thought through and there was insufficient evidence establishing it would achieve optimal outcomes for XVCP and the use of scheme funds if utilised in the way Ms XVCP proposed to use it.[261]
[261] RCS, [111]-[126].
With respect to XVCP’s care needs, the Tribunal has considered the evidence before it as it relates to XVCP’s functional capacity and behaviour. The Tribunal accepts that XVCP has sensory sensitivities which affect his capacity to complete particular self-care activities, specifically feeding and showering. Reports provided by Dr AG, Ms SO, Ms LK, Ms KS, Ms DS and Ms SB, together with Ms DK’s oral evidence, corroborated Ms XVCP’s evidence that feeding is an activity XVCP finds particularly challenging and requires significant support to complete. Ms XVCP’s evidence suggests that whilst XVCP can now wash his hair in the shower, he is extremely disturbed by water getting onto face or into his eyes. This is consistent with Dr AG’s and Dr PH’s reporting that XVCP is extremely sensitive to and avoidant of water; and Ms SB’s opinion that bathing is a task with which XVCP requires support. In relation to other self-care activities, more recent evidence suggests, and the Tribunal finds that at the time of this decision, with the exception of shoelaces, zippers and certain buttons, XVCP is able to dress himself with minimal assistance and prompting; can brush his teeth independently; and can toilet independently other than calling for assistance to wipe.
The Tribunal accepts that XVCP is impulsive, has difficulty self-regulating and exhibits challenging behaviours. Ms XVCP’s evidence paints a picture of XVCP being easily triggered, having persistent meltdowns, being verbally and physically aggressive, acting impulsively and routinely absconding. Ms DZ and Mr JD have each worked with XVCP within his home over an extended period, and both gave evidence to the effect that XVCP is unpredictable and easily triggered, and they have each observed him abscond and exhibit challenging behaviours. The Tribunal found Ms DZ and Mr JD to be frank witnesses, who gave oral evidence without embellishment. Ms DL reported that whilst in the family home in May 2024, she too observed XVCP run and abscond. These first-hand observations of XVCP’s behaviour were consistent with Ms XVCP’s evidence. As behaviour support practitioners, the Tribunal considers that both Ms AP and Ms DL are suitably qualified to identify behaviours of concern; and found that component of their respective reports’ persuasive. The Tribunal has also given some weight to information included in Ms SB’s report as having been reported to her in August 2023 by XVCP’s current occupational therapist and school counsellor with respect to XVCP’s emotional dysregulation, behavioural problems, and emotional outbursts.[262]
[262] E2, R2, 19.
The Tribunal accepts that XVCP experiences functional deficits with respect to social interaction. Ms SB reported that as at August 2023, at both school and home, XVCP was functioning in the below average to extremely low range (on the ABAS-3) for his social and emotional development; and the low average to extremely low range for his social interaction (on the ABAS-3).[263] In circumstances where ABAS-3 questionnaires were completed by 2 separate individuals in 2 different settings (home and school), and scored by a registered psychologist, the Tribunal found this evidence persuasive. The Tribunal also considers that Ms DL is appropriately qualified to identify inappropriate social behaviours and has therefore given some weight to that component of her report.[264]
[263] E2, R2, 15, 17.
[264] E2, A38, 232.
Having considered the evidence before it, and based on the above findings, the Tribunal is satisfied that XVCP’s care needs with respect to feeding, bathing, self-regulation, behaviour, and social interaction are substantially greater than other 8-year-old children that do not live with disability.
With respect to the family’s circumstances, the Tribunal accepts that Mr XVCP and Ms XVCP are the extent of informal support for both XVCP and his brother; and that XVCP’s brother has significant support needs arising from his diagnoses.
Mr XVCP did not provide written or oral evidence in relation to this matter. The Tribunal accepts that Mr XVCP works full-time and will sometimes need to work outside of ordinary hours given his employer is a global company. However, the Tribunal found Ms XVCP’s evidence with respect to Mr XVCP’s employment vague, such that the Tribunal has been unable to gauge the extent to which he is in fact required to work outside of normal business hours; or whether flexible working arrangements are available to him generally or given his children’s support needs. That uncertainty, together with Ms XVCP’s concession that she thinks Mr XVCP sometimes uses his work as an excuse to withdraw, leads the Tribunal to conclude that Mr XVCP is not prevented by his employment from doing more than he currently does to provide care and support for XVCP.
Whilst the Tribunal accepts Ms XVCP’s evidence that Mr XVCP lives with diabetes, and that she thinks he is on the autism spectrum, in the absence of objective clinical evidence the Tribunal is not persuaded that Mr XVCP’s diabetes does generally impact his capacity to provide care and support for XVCP; or that Mr XVCP is in fact on the autism spectrum. Whilst the Tribunal accepts Ms XVCP’s evidence that Mr XVCP displays some sensory and self-regulation issues, the Tribunal was not persuaded that those issues do impact his capacity to provide care and support for XVCP in any significant way, and finds accordingly.
With respect to Ms XVCP, the Tribunal accepts that she is the primary carer for both XVCP and his brother. As both boys, particularly XVCP’s brother, have care needs that exceed those of other children their age that do not live with disability, there can be no doubt that Ms XVCP carries an onerous load. The Tribunal acknowledges Ms XVCP’s evidence that this review process, which was preceded by a review process concerning XVCP’s brother’s SOPS, has only added to the relentless demands made of her.
A significant basis on which Ms XVCP claimed the requested support was reasonable and necessary was her experience of carer burnout and the need to sustain XVCP’s informal support. The Tribunal accepts that Ms XVCP is experiencing significant carer burnout. In this regard, the Tribunal found Ms XVCP’s evidence as it related to her mental and physical health to be frank and consistent over time. Her evidence was corroborated by clinical evidence provided by Ms LG, Mr FN, Dr GC and Mr PJ. Ms SB similarly reported in May 2024 that the high level of Ms XVCP’s carer burnout was of concern; and that the risk of carer burnout is real and must be considered.
Regarding Ms XVCP’s professional commitments, the Tribunal accepts that she works full-time in a demanding role, and that the flexible working arrangements available to her are subject to organisational needs. However, the Tribunal found Ms XVCP’s evidence ambiguous with respect to what her typical working week looks like. This has made it difficult for the Tribunal to gauge the extent to which her professional obligations impact her capacity to care and support XVCP. However, doing the best it can on the evidence before it, the Tribunal finds that Ms XVCP’s role is such that she is expected to meet her full-time employment responsibilities; she will sometimes work from home; when working from home she cannot contemporaneously provide care and support to XVCP and / or his brother; and she will sometimes catch up on work late at night.
An understanding of what a typical week looks like for XVCP and his family is relevant to the Tribunal’s consideration of whether the requested support is reasonable and necessary. For example, such information would help identify how often, when and for how long XVCP requires formal support; and how the proposed utilisation of the support will fit within XVCP’s week. Ms XVCP was asked numerous questions at the hearing to ascertain what is happening with XVCP over the course of each day, including what care and support he needs; how his needs are met; and how and to what extent the care and support needs of XVCP and his brother are in conflict. The Tribunal was careful to explain to Ms XVCP why it considered this information particularly relevant to the issue on review.[265] Despite that explanation, the Tribunal found Ms XVCP’s evidence in relation to this lacked detail and was ambiguous. This was unfortunate given her oral evidence that the weekly schedule in written evidence was outdated and, in some respects, inaccurate. Whilst the Tribunal accepts Ms XVCP’s evidence in relation to the family’s typical week as outlined at paragraphs [32] and [34], the Tribunal finds that evidence does not demonstrate the extent to which the care and support needs of XVCP and his brother are in conflict (particularly in circumstances where Ms XVCP’s evidence is that XVCP’s brother is funded for 25 hours of support worker assistance each week), such that XVCP’s support needs cannot be met without 1:1 formal support.
[265] Transcript, 118 [34] -120 [6].
Further to the above, Ms XVCP’s evidence with respect to XVCP and his family’s typical week is difficult to reconcile with her evidence regarding how she intends utilising the requested support. For example, Ms XVCP’s evidence suggests she would utilise morning support in blocks that cover the entire period that XVCP is awake before school; and does not explain why all XVCP’s before school care and support needs must be met by formal support. Similarly, Ms XVCP gave evidence that she intends engaging a support worker for approximately 3 hours on weekday afternoons or evenings, however her evidence does not explain why XVCP requires 3 hours of formal support in the afternoon or evening (rather than, for example, 2 hours), particularly when XVCP’s brother has a support worker each afternoon from approximately 5:00pm or 6:00pm until 8:00pm.
Before the Tribunal are several recommendations made by allied health therapists regarding the support worker assistance that should be funded in XVCP’s SOPS. In July 2022, Ms KS recommended 3 hours of support worker assistance after school to enable XVCP to be facilitated in completing a range of daily living functional activities. In February 2023, Ms LK recommended 14 hours a week (2 hours per day) of support worker assistance in the afternoons, to support XVCP’s social communication and feeding needs.
In March 2023, Ms AP recommended 10 hours per week over 52 weeks for assistance with self-care at the standard weekday daytime rate; 3 hours per day over 180 (school) days for assistance with self-care at the standard weekday evening rate; and 5 hours per week over 52 weeks for access community, social and recreational activities at the Saturday rate. In describing the type of activities that a support worker would facilitate with XVCP, Ms AP appears to have relied very heavily on Ms KS’s July 2022 report. Over a 12-month period, Ms AP’s recommendation totals 1060 hours for assistance with self-care and 260 hours for assistance with community access. The financial cost of this recommendation, by reference to current pricing arrangements, is approximately $100,000.00.[266] In May 2023, Ms LD reported that it was her professional opinion the support worker assistance recommended by Ms AP in March 2023 remains what should be funded in XVCP’s SOPS. However, the Tribunal notes that whilst Ms AP recommended 5 hours per week over 52 weeks for access community, social and recreational activities, Ms LD appears to have recommended 6 hours, that is an extra 52 hours over 12 months.
[266] NDIS Pricing Arrangements and Price Limits 2024-2025 Version 1.2 (published 9 July 2024) (NDIS Pricing Arrangements), 39.
What is unclear from the abovementioned reports is how and why they each came to recommend a specific number of hours, whether in making the recommendation they considered if fewer hours or alternative support could achieve the same outcome for XVCP, how the recommended support will be implemented, and how it will achieve the expected outcomes. It is also unclear why, given Ms AP appears to have relied very heavily on Ms KS’s July 2022 report when identifying the types of activities that a support worker would facilitate with XVCP, the hours of support worker assistance she recommended are significantly greater than those recommended by Ms KS.
Ms LD was called to give oral evidence at the hearing. The Tribunal did not find Ms LD to be a persuasive witness. When asked why she had recommended weekday morning support for 52 weeks a year, but weekend evening support only during school term, she was unable to provide any explanation other than to say her report was prepared quickly and she is reviewing her recommendations. Similarly, she could not provide any meaningful explanation for why she had recommended 3 hours of assistance with self-care on weekday evenings (rather than 2 hours), or that all community participation hours be funded at the Saturday rate. The Tribunal was concerned by Ms LD’s evidence that she would not have considered how the recommended hours would be implemented. Of particular concern to the Tribunal was Ms LD’s evidence that recommendations within her report were what Ms XVCP wanted and what had also been recommended by Ms AP. This caused the Tribunal to question whether recommendations included within Ms LD’s report were impartial, objective and based upon her own professional assessment of XVCP’s support needs.
Separate to XVCY’s allied health therapists, in August 2023 Ms SB recommended 480 hours of support worker assistance (2 hours per weekday for 48 weeks) to provide in-home afternoon support with regard to eating and building independence on weekdays. Ms SB’s evidence was to the effect that for her to recommend a high level of support for XVCP such as that sought on review, she would need a clear plan of how that would be implemented, and how the requested hours are going to be utilised to optimise caring for XVCP, giving the parents respite, and also building skills and independence. Such a plan was to Ms SB’s mind lacking in the material made available to her when preparing her reports. In oral evidence Ms SB explained the information she would need to prepare a plan concerning support worker assistance for XVCP. This included detailed information regarding the needs and routines of XVCP and his brother; the parents’ competing commitments; XVCP’s therapy schedule; and XVCP’s NDIS goals.
The Tribunal found Ms SB’s evidence to be measured and objective. Whilst Ms SB had not had an opportunity to directly observe XVCP, she did review material prepared by XVCP’s treaters, and spoke with Ms XVCP and XVCP’s current occupational therapist and school counsellor. The Tribunal found Ms SB’s evidence in relation to the considerations and details that should inform a recommendation for support worker assistance, as reiterated at paragraph [111], particularly forceful.
Request for home based assistance
Whilst the Tribunal accepts that XVCP’s support needs exceed those of other 8-year-old children that do not live with disability, the evidence does not demonstrate that XVCP’s support needs rise to such a level, or that he and his brother’s care and support needs are in conflict to such an extent, that XVCP requires funding for 19 hours of home based assistance each week. Further, Ms XVCP’s evidence with respect to XVCP and his family’s typical week is difficult to reconcile with her evidence regarding how she intends utilising home based assistance each week, and does not demonstrate that the need for formal support is to the extent requested on review. In these circumstances, the Tribunal considers that the same outcome would be achieved by funding less than 19 hours of home based support each week.
The Tribunal understands Ms XVCP broadly intends using the requested home based support flexibly across the week. Having given significant weight to Ms SB’s evidence, the Tribunal agrees with the Respondent’s submission that the apparent lack of any substantive plan formulated by XVCP’s therapists in collaboration with Ms XVCP regarding the practical implementation of that support, gives rise to a real risk that the support will not be used optimally to support XVCP, assist XVCP to pursue his NDIS goals, and support XVCP’s family.[267] Further, the Tribunal is concerned that utilising 19 hours of home based support in an ad-hoc way will undermine the potential for such support to reduce the cost of the funding of supports for XVCP in the long-term and to assist the family to transition from what Ms SB described as ‘survival mode’ into ‘therapy mode’.
[267] RCS, [75]-[86].
Having considered the matters prescribed in Part 3.1 of the Rules, and for the reasons outlined at paragraphs [113] to [115], the Tribunal is not persuaded funding 19 hours of home based assistance each week 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, as is required by s 34(1)(c). Accordingly, the Tribunal is not satisfied that the requested support, as framed, is reasonable and necessary. It follows that 25 hours of home based assistance each week is not reasonable and necessary.
Separate to the above, and consistent with the Respondent’s closing submission, the Tribunal is similarly not satisfied that funding 19 hours each week of home based assistance (or for that matter 25 hours each week of such support) takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.[268] The starting point in relation to this consideration is that it is normal for parents to provide substantial care and support for children.
[268] RCS, [91]-[104].
However, the Tribunal has accepted that XVCP’s care needs are substantially greater than other 8-year-old children that do not live with disability. It has also accepted that XVCP’s brother has significant support needs arising from his diagnoses. There can be no doubt that the combined care and support needs of both boys is extensive. Ms XVCP is experiencing significant carer burnout, and the risk to her wellbeing if she is not afforded some relief from caring responsibilities is significant.
The above matters need to be weighed and balanced with a consideration of Mr XVCP’s support of XVCP. Ms XVCP’s evidence was to the effect that the extent of support Mr XVCP provides to XVCP involves occasional school drop-offs and transporting him to a gym-like facility on Saturday or Sunday. At paragraphs [100] to [101], the Tribunal found that Ms XVCP is not prevented by his employment from doing more than he currently does to provide care and support for XVCP; he is not on the autism spectrum; and his capacity to provide care and support for XVCP is not generally impacted by his diabetes, or significantly impacted by his sensory and self-regulation issues. In those circumstances, and in the absence of further persuasive evidence to the contrary, the Tribunal considers Mr XVCP could reasonably be expected to provide more care and support for XVCP. This, to the Tribunal’s mind, is particularly so in the morning whilst Ms XVCP is getting herself and XVCP ready, and on weekends.
The Tribunal has considered Ms XVCP’s evidence that she cannot force Mr XVCP to do more for XVCP and empathises with that. However, the legislation requires the Tribunal to consider ‘what is reasonable to expect’ of families, and the Tribunal is not persuaded that Mr XVCP cannot reasonably be expected to provide more care and support for XVCP. As was identified in the Respondent’s closing submissions, ‘the viability of the scheme would be significantly undermined if supports had to be funded on account of a parent’s unreasonable choice not to support their child’.[269]
[269] RCS, [94].
Having considered the matters prescribed in Part 3.4 of the Rules, and for the reasons outlined at paragraphs [116] to [119], the Tribunal is not satisfied funding 19 hours each week of home based assistance (or for that matter 25 hours each week of such support) takes account what is reasonable to expect of families, carers, informal networks and the community to provide, as is required by s 34(1)(e). Accordingly that support is not reasonable and necessary.
The Tribunal has considered whether any additional home based assistance is reasonable and necessary such that it should be specified in XVCP’s SOPS. For the reasons that follow, the Tribunal is satisfied that 576 hours of home based assistance over 12 months to support XVCP in the afternoon with feeding and building independence (Support 1) is reasonable and necessary for the purposes of s 34(1). This equates to approximately 2.2 hours each weekday of home based assistance over 52 weeks.
Consistent across all of the evidence provided by XVCP’s treating therapists is a consensus that XVCP experiences significant challenges and has high support needs in relation to feeding. XVCP’s evening meal is protracted, and often triggers XVCP’s emotional dysregulation. The Tribunal is satisfied that funding Support 1 will assist XVCP to pursue the goals, objectives and aspirations included in his statement of goals and aspirations, particularly his goals to improve his self-care, cognitive skills and emotional skills.[270] The Tribunal is similarly satisfied that supporting XVCP in relation to feeding, and building his capacity and independence with that activity, will help him to engage with food in a more positive way around his family and peers, thus facilitating his social participation.[271]
[270] s 34(1)(a).
[271] s 34(1)(b).
Whilst the cost of the funding Support 1 is not insignificant, the Tribunal considers it will complement the funding in XVCP’s capacity building budget, helping to optimise the collective benefit of the reasonable and necessary supports funded in XVCP’s SOPS. This will likely reduce the cost of funding of supports for XVCP in the long-term. Building XVCP’s capacity with feeding will also substantially improve his life stage outcomes and be of long term benefit to XVCP, in that it will improve his independence and nutritional health. The Tribunal is therefore satisfied that funding Support 1 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.[272] The Tribunal is similarly satisfied that funding Support 1 will be, or is likely to be, effective and beneficial for XVCP, having regard to current good practice.[273] Ms AP, Ms KS, Ms LK and Ms SB all identified feeding as an activity with which XVCP requires support; and as an activity that a support worker should be funded to assist XVCP with.
[272] s 34(1)(c).
[273] s 34(1)(d).
Whilst it is normal for parents to provide substantial care and support for children, XVCP’s care and support needs are substantially greater than other children his age. Feeding is a particularly challenging activity for him and one which also causes his family, and in particular Ms XVCP, significant distress. Ms XVCP is experiencing significant carer burnout, and the risk to her wellbeing if she is not afforded some relief from caring responsibilities is significant. Funding Support 1 in the afternoon will offer Ms XVCP respite at what is on the material before the Tribunal a particularly challenging time of the day for XVCP. The Tribunal is therefore satisfied funding Support 1 takes account of what is reasonable to expect families, carers, informal networks and the community to provide.[274] There is no evidence before the Tribunal that Support 1 is more appropriately funded or provided through other services or systems.[275]
[274] s 34(1)(e).
[275] s 34(1)(f).
Accordingly, the Tribunal is satisfied that 576 hours of home based assistance over 12 months to support XVCP in the afternoon with feeding and building independence is reasonable and necessary for the purposes of s 34(1).
Request for community access support
Funding is sought for 6 hours of community access support each week. Specifically, the funding sought is 6 hours each week of support worker assistance for access community social and recreation activities to be specified in the core budget within XVCP’s SOPS. Ms XVCP gave evidence that she intends utilising that support to facilitate XVCP’s participation in a music program and a soccer program. The music program involves after school rehearsals and morning tuition; a total of 3 contact hours each week. The soccer program involves 2 after school training sessions per week, and a soccer match on Saturdays. Ms XVCP thought that the soccer program ran over 2 school terms. Ms XVCP appeared to know very little else in relation to these programs. There is no material from either of these programs in evidence. Whilst the Tribunal has no doubt Ms XVCP is genuinely wanting to support XVCP to explore activities of interest to him, and for him to have opportunities for community participation, Ms XVCP’s limited knowledge of these programs suggested proper consideration had not been given to whether they are in fact appropriate options to achieve those objectives.
The Tribunal is mindful of Ms XVCP’s evidence about the significant challenges XVCP experienced when he has previously tried to participate in group activities, such as robotics, public speaking and soccer. He was, on each of those occasions, removed from the class or denied ongoing enrolment, due to behavioural issues. Given XVCP previous experience when trying to engage in group programs, and the extent of his challenges with social interaction, the Tribunal considers it is extremely important that careful consideration is given to sourcing an appropriate program for him, both to set him up to succeed and to ensure that funding is utilised optimally. The Tribunal is not satisfied that that enquiry has taken place.
The Tribunal understands that the request is for 6 hours each week over 52 weeks. However, Ms XVCP thinks the soccer program runs for 2 terms; and the duration of the music program is unclear. It is, therefore, unclear on the evidence, what a significant portion of the requested funding will be utilised for during the coming 12 months; or whether in fact there is any plan for how the requested funding will be utilised for much of that time. Nor does the evidence explain how these 6 hours of group activities will successfully fit into XVCP’s week, which already includes school and therapies.
In the IBSP dated May 2024, Ms LD recommended 6 hours of community access support so that XVCP could participate in soccer and music programs. Ms LD gave evidence that she understood XVCP struggled with group activities and considered that 1:1 support would help him to participate. Ms LD’s evidence did not explain why she considered these particular programs appropriate; or how her recommendation for 1:1 support might be implemented within each program. In oral evidence Ms LD agreed that Ms XVCP had told her these were things XVCP could do, she thought they would be beneficial to XVCP, and she had been told he enjoyed music therapy.
Considered as a whole, the Tribunal was not satisfied that Ms LD had sufficient information in relation to each of the proposed programs to make an objective assessment of whether they would each benefit XVCP or whether they are appropriate programs within which XVCP’s participation could be facilitated. Ms LD’s evidence that she had recommended 6 hours each week over 52 weeks for community access at the Saturday rate ‘just in case … those games were … to be held on a weekend’, further suggests the recommendation was not carefully considered, and did not contemplate the need to expend public funds responsibly, and to ensure the financial sustainability of the NDIS.
Having considered the matters prescribed in Parts 3.1 and 3.2 of the Rules, and in light of the above, the Tribunal is not satisfied that funding for 6 hours of community access support each week over 52 weeks 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, as is required by s 34(1)(c); or that the support will be, or is likely to be, effective and beneficial for XVCP, having regard to current good practice, as is required by s 34(1)(d). Funding for 6 hours of community access support over 52 weeks is therefore not reasonable and necessary.
Alternative support
In closing submissions, the Respondent outlined that based on the evidence before the Tribunal, they considered the following support to be reasonable and necessary in lieu of XVCP’s request:
a)A support worker in the total sum of 104 hours over 12 months for individual skills development and training to assist with building capacity for social and community participation (2 hours per week at a weekday rate); and
b)104 hours over 12 months for a therapy assistant (level 2) (2 hours per week).[276]
[276] RCS [145].
At paragraphs [126] to [131], the Tribunal determined on the evidence before it, that the request to fund a support worker for access community social and recreation activities is not reasonable and necessary. However, the evidence before the Tribunal clearly demonstrates that XVCP experiences significant challenges in relation to social interaction, and his capacity for social and community participation is currently constrained by his disability. The question arising is however how XVCP might be supported to increase his social and community participation.
For the reasons that follow, the Tribunal is satisfied that funding 104 hours over 12 months for individual skills development and training to assist with building capacity for social and community participation, is reasonable and necessary.
The Tribunal has accepted that XVCP is impulsive, has difficulty self-regulating and exhibits challenging behaviours. It has also accepted that XVCP experiences functional deficits with respect to social interaction. In combination, these challenges have negatively impacted XVCP’s previous attempts to participate within group activities. Dr AG, Ms LD and Mr JD each recommend that XVCP be supported to develop social skills and to participate in the community. The Respondent does not doubt, and the Tribunal agrees, that in general, social and community participation will benefit XVCP.[277] Ms SB gave evidence that with respect to social and community participation, it may be best to start with something like a one-on-one, or small group where the support worker can plan things, minimise triggers, work on specific goals, and then work towards something like a sports team.
[277] RCS [113].
Individual social skills development funding is to assist participants to develop their social skills for participation in community and social settings.[278] It comes under the umbrella of capacity building, improved relationships, which is a support category for the provision of specialised assessment where a participant may have complex or unclear needs, requiring long term or intensive supports to address behaviours of concern.[279]
[278] NDIS Pricing Arrangements, 78.
[279] NDIS Pricing Arrangements, 77.
On the evidence before it, the Tribunal considers that funding 2 hours each week for individual social skills development to assist with building XVCP’s capacity for social and community participation will assist XVCP to pursue the goals, objectives, and aspirations included in his statement of goals and aspirations, as is required by s 34(1)(a), particularly his goals to improve his social skills, emotional skills and communication skills. Supporting XVCP to develop his social skills so that he can improve his capacity for social and community participation will assist XVCP to undertake activities, so as to facilitate his social participation, as is required by s 34(1)(b).
Whilst the cost of funding 2 hours each week of individual social skills development is not insignificant, the Tribunal considers that such support is vital to improve life stage outcomes for XVCP and will be of long-term benefit to him. Further, supporting XVCP to develop his social skills will help acquire the tools necessary to successfully engage in social and community participation. The Tribunal is therefore satisfied that the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support, as is required by s 34(1)(c). Having given significant weight to Ms SB’s evidence as outlined at [135], the Tribunal is similarly satisfied the support will be, or is likely to be, effective and beneficial for XVCP, having regard to current good practice, as is required by s 34(1)(d).
The Tribunal accepts that an appropriately trained and experienced support worker is best placed to support XVCP to develop his social skills for participation in community and social settings. Further, given the significance of XVCP’s challenges in this area, the demands already upon XVCP’s family, and Ms XVCP’s current experience of carer burnout, the Tribunal does not consider that Mr and Ms XVCP could reasonably be expected to provide this support to XVCP in any routine way. The Tribunal is therefore satisfied that the requirements in ss 34(1)(e) and (f) are met. Accordingly, funding for 104 hours (2 hours each week) of individual social skills development to assist with building XVCP’s capacity for social and community participation is reasonable and necessary for the purposes of s 34(1).
With respect to the Respondent’s submission in relation to funding a therapy assistant, the Tribunal considers that XVCP’s existing SOPS includes a significant budget for capacity building. The Tribunal has found that in addition to those reasonable and necessary supports already specified in XVCP’s SOPS, funding for 576 hours of specialised home based assistance for a child, and 104 hours of individual social skills development, are reasonable and necessary. The Tribunal considers in those circumstances, any funding for a therapy assistant would duplicate other supports delivered under alternative funding through the NDIS, and pursuant to r 5.1(c) of the Rules, will not be provided or funded under the NDIS.
Further, Ms SB’s evidence as outlined a paragraph [79] is the only evidence before the Tribunal from any allied health professional regarding funding for a therapy assistant. Ms SB’s evidence was to the effect that therapy assistant funding should be granted only in response to a specific plan written by an appropriately qualified allied health professional; and that considering the time spent in school and XVCP’s already busy therapy timetable, it is unclear how further therapy assistant supports and skill building sessions would not add to fatigue and diminishing gains for an 8-year-old child. On the evidence before the Tribunal, the Tribunal is not satisfied that funding a therapy assistant will be, or is likely to be, effective and beneficial for XVCP, having regard to current good practice, as is required by s 34(1)(d).
DECISION
Pursuant to s 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth) the decision under review is set aside and the matter is remitted to the Respondent for reconsideration in accordance with directions that:
The statement of participant supports specifies that the reasonable and necessary supports include:
a) 576 hours of specialised home based assistance for a child
b) 104 hours of individual social skills development
The Supports at (1)(a) will replace XVCP’s existing supports for specialised home based assistance for a child
The management of funding for reasonable and necessary supports is to remain the same as the management for those supports as specified in XVCP’s existing statement of participant supports.
All other reasonable and necessary supports in XVCP’s existing statement of participant supports are to be replicated pro-rata from the date on which the supports at (1) are specified in XVCP’s statement of participant supports until the reassessment date.
The date by which the Respondent must reassess XVCP’s plan is to be 12 months from the date on which the supports at (1) are included in XVCP’s statement of participant supports.
I certify that the preceding one hundred and forty two (142)
paragraphs are a true copy of the reasons
for the decision herein of Member L Proske
……[sgnd]………………………..
Associate
Dated: 24 July 2024
Date of hearing: 13, 16 and 17 May 2024
Last submission: 17 June 2024
Advocate for the Applicant: Julia Clancy
Spinal Cord Injuries Australia
Advocate for the Respondent: Ben McGlade
Deane Chambers
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