JFXZ and National Disability Insurance Agency
[2022] AATA 3196
•3 October 2022
JFXZ and National Disability Insurance Agency [2022] AATA 3196 (3 October 2022)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2021/1986
Re:JFXZ
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
Decision
Tribunal:Senior Member K. Parker
Date:3 October 2022
Place:Melbourne
The Tribunal affirms the Decision Under Review.
..............................[SGD]..........................................
Senior Member K. Parker
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – review of decision to approve statement of participant supports – child participant with a disability arising from Ehlers Danlos Syndrome (Type 3) (EDS) and idiopathic scoliosis – whether dynamic SpineCor Comfort spinal brace and dynamic movement orthotic suit meet the “reasonable and necessary supports” criteria under s 34(1) of the National Disability Insurance Scheme Act 2013 (Cth) – consideration of whether requested supports are likely to cause harm to the participant – consideration of whether the requested supports are, or likely to be, effective and beneficial – consideration of whether the requested supports represent value for money – lack of evidence showing that requested supports, or the use of a dynamic bracing system as opposed to a rigid-type brace, were endorsed by a medical practitioner as being medically appropriate for the Applicant given her significant scoliosis and comorbidity of EDS – Tribunal concluded requested supports do not meet the mandatory criteria under subsections 34(1)(c) and (d) – requested supports not “reasonable and necessary supports” and should not be included in Applicant’s statement of participant supports – Decision Under Review affirmed
Legislation
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013Cases
McGarrigle v National Disability Insurance Agency [2017] FCA 308
Secondary Materials
Operational Guidelines issued by the NDIA: Reasonable and necessary supports | NDIS
2016 SOSORT guidelines: orthopaedic and rehabilitation treatment and idiopathic scoliosis during growth”, Negrini S et al. Scoliosis & Spinal Disorders, (2018), 13:3 - 2016 SOSORT guidelines: orthopaedic and rehabilitation treatment of idiopathic scoliosis during growth | Scoliosis and Spinal Disorders | Full Text (biomedcentral.com)REASONS FOR DECISION
Senior Member K. Parker
3 October 2022
INTRODUCTION
The Applicant, JFXZ,[1] is a child participant of the National Disability Insurance Scheme (NDIS). She was represented in this proceeding by her mother and father (who will be referred to as Mr JFXZ and Mrs JFXZ or collectively as the Parents). On 1 April 2021, Mr JFXZ applied for a review of an internal review decision made by a “reviewer” under s 100 of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act) on 30 March 2021.[2] This internal review decision relates to an earlier decision, made under s 33(2) of the NDIS Act on 11 February 2021[3] by a delegate of the CEO of the National Disability Insurance Agency (NDIA), to approve a statement of participant supports forming part of her NDIS plan (Original SOPS). The total approved funding in the Original SOPS was $17,631.22, covering a notional plan duration of 12 months.[4]
[1] The Applicant is a 14-year-old child and so her name will be the pseudonym, JFXZ, and other identifying information has been omitted from these Reasons for Decision, where indicated, to maintain the Applicant’s confidentiality. Confidentiality orders have been made in this application pursuant to s 35 of the Administrative Appeals Tribunal Act 1975 (Cth).
[2] Refer T-Documents at T1A and T2. As a result of the internal review decision, a new NDIS plan was sent to JFXZ on 6 April 2021 approving total funded supports of $15,859.35 over a notional plan duration of ten months – refer T-Documents T20 at page 113.
[3] Refer T-Documents at T19.
[4] Ibid at T19 on page 101.
During the course of this proceeding, the Tribunal remitted this matter to the Respondent under s 42D of the Administrative Appeals Tribunal Act 1975 (Cth) (AAT Act). A delegate of the CEO of the NDIA approved a new statement of participant supports (Remittal SOPS) for JFXZ on 20 August 2021.[5] The Remittal SOPS approved total funded supports of $20,718.97 covering a notional plan duration of six months. The Remittal SOPS provided additional funding of $9,000 for “Custom Made Foot Orthotics”, and a total of 24 hours of Level 2 support coordination. By operation of s 42D(4) of the AAT Act, this application is taken to be an application for review of this new decision dated 20 August 2021 (Decision Under Review).
[5] Refer Hearing Tender Bundle (HTB) at pages 420 to 432.
Subsequently, a delegate of the CEO of the NDIA made a decision to approve a new statement of participant supports for JFXZ on 18 February 2022 (Current SOPS).[6] The Current SOPS approved total funded supports of $31,856.18 covering a notional plan duration of 12 months.[7]
[6] Refer Supplementary T-Documents ST1. In NDIA’s covering letter attaching this plan, it states this plan commenced on 17 February 2022.
[7] Refer Supplementary T-Documents at ST1 on page 11.
The Tribunal’s jurisdiction in relation to this application arises under s 25(1) of the AAT Act, operating in conjunction with s 103 of the NDIS Act.
Requested Supports
The NDIA in its written Closing Submissions dated 12 April 2022 described the requested supports as including “two SpineCor Comfort Plus Braces and Korthotic Dynamic Movement Scoliosis Suit”.[8]
[8] Refer NDIA’s Closing Submissions at paragraph [8].
In JFXZ’s written Closing Submissions dated 26 April 2022, Mr JFXZ requested, on behalf of JFXZ, that funding be included in her NDIS plan for the following supports (Requested Supports):
(a)48 hours per annum of support coordination services; and
(b)$15,000 per annum for a “dynamic body orthotic/DMO suit/SpineCor Brace”.
The Parents also sought reimbursement for “one SpineCor and one DMO suit” that they had already purchased for JFXZ. “DMO” stands for dynamic movement orthosis.[9]
[9] Refer HTB at page 27.
Mrs JFXZ states that the DMO suit “offers compression, easy toileting, can be used as a swimming costume, has built in bra, aides in controlling body temperature, improves core stability, improves posture, improves muscle function and muscle tone” and “[p]revents falls”. She states that the SpineCor body suit “offers comfort, spinal correction including derotation of the left shoulder, prevents twisting of her pelvis, prevents subluxation of the shoulder and hip joints, prevents falls, aides in controlling body temperature, improves posture, improves muscle function and muscle tone”. She states that this suit enables JFXZ to walk without other aides and assists her greatly in “fatigue management”. Mrs JFXZ asserts that this suit would allow JFXZ’s body to “develop naturally”.[10]
[10] Ibid.
Mrs JFXZ states as follows:[11]
These suits provide [JFXZ] the support, confidence and the ability to participate some normal daily activities.
Without these suits [JFXZ] is very prone to falling, subluxation of joints occurs, fatigue is extremely bad causing long periods of bed rest causing social isolation and lack of participation at school. This [in turn] impacts on her mental, physical and emotional health which deteriorates at a rapid rate.
[JFXZ] has exhausted all rigid bracing with NSW Health as advised by the NDIS. [JFXZ] experienced skin ulcerations, skin tearing, respiratory complications, top heaviness causing falls, increased levels of fatigue, over heating over her body temperature which caused her to collapse on several occasion. [JFXZ] has great difficulty in regulating her body temperature.
[11] Ibid.
Given that funding was provided for support coordination in the Remittal SOPS, the matter remaining in dispute between the parties is whether additional funding should be provided under the NDIS for one or more “dynamic body orthotic/DMO suit/SpineCor Brace” (Requested Supports).
The NDIA in its Closing Submissions made the following two primary contentions:
(a)JFXZ should be reviewed following further scanning by a deformity spinal specialist to monitor spinal curve progression and before any bracing is recommended, in line with a medical opinion expressed by Dr Anil Nair, Orthopaedic Surgeon. The NDIA states that this type of review has not occurred since 2019 and therefore, the criteria under ss 34(1)(a), (b), (c) and (d) of the NDIS Act are not met;[12] and
(b)the SpineCor Comfort Plus Brace and Korthotic Dynamic Movement Scoliosis Suit treat her scoliosis condition. The NDIA contends that the primary purpose of the brace is to correct or to minimise the curve of the spine, and that this support is more appropriately funded through the health system as opposed to the NDIS and therefore, the criteria under s 34(1)(f) of the NDIS Act is not met.[13]
[12] Refer NDIA’s Closing Submissions at paragraph [9.1].
[13] Ibid at paragraph [9.2].
LEGISLATIVE FRAMEWORK
The NDIS was established under the NDIS Act and operates in pursuit of the objectives set out in s 3 of the NDIS Act. Section 4 establishes general principles that are to guide actions to be taken under the NDIS Act.
A participant’s plan must be prepared in accordance with the NDIS Act and regulations made under s 32A of the NDIS Act. It must include a SOPS. The SOPS must be approved in accordance with the NDIS Act, and any regulations made under the NDIS Act such as the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Support Rules).
Section 33(5) of the NDIS Act requires that the CEO (or his or her delegate), in deciding whether to approve the SOPS under s 33(2), have regard to several factors including the participant’s statement of goals and aspirations and relevant assessments conducted in relation to the participant; and be satisfied that the supports are “reasonable and necessary supports”.
Section 34(1) of the NDIS Act requires six mandatory criteria be met before a support is considered to be a “reasonable and necessary support”. Section 34(2) provides that the NDIS rules may prescribe methods or criteria to be applied or matters to which the decision maker is to have regard, in deciding whether they are satisfied that the criteria under s 34(1) have been met in respect of a requested support.
Section 34(1) of the NDIS Act provides as follows:
34 Reasonable and necessary supports
(1)For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
(b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
(c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and community to provide;
(f)the support is most appropriately funded or provided through the [NDIS], 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.
The Support Rules deal with supports for participants under the NDIS.
The Tribunal notes the observations of Mortimer J in McGarrigle v National Disability Insurance Agency [2017] FCA 308 (McGarrigle) at [43] as follows:
The [Support Rules] are an important element of the legislative scheme, introducing the ability to modify the operation of ss 33 and 34 by, for example, excluding certain kinds of supports from inclusion in participant plans. It is through the Rules that the executive is able to implement… some policy decision-making about the nature and extent of supports to be provided or funded under the NDIS.
The Tribunal has also considered the Operational Guidelines published by the NDIA on its website; specifically, those relating to the assessment of whether a requested support meets the “reasonable and necessary” criteria under s 34(1) of the NDIS Act.[14] The Tribunal will take into account those guidelines. However, the Tribunal will not apply them in this application if to do so would be inconsistent with the provisions of the NDIS Act and/or the Support Rules.
[14] Refer NDIS Operational Guidelines - Reasonable and necessary supports | NDIS.
ISSUES
The ultimate task for the Tribunal in this matter is to review the decision made to approve a SOPS for JFXZ. This will involve reviewing the funding provided in the SOPS for supports for JFXZ, the notional duration of the SOPS, and who should manage the funding or other aspects of the plan. There was no issue in relation to the latter two matters.
As mentioned above, the area of dispute between the parties is whether funding should be included to pay for the Requested Supports. This will depend upon whether those supports meet the six mandatory “reasonable and necessary supports” criteria in s 34(1) of the NDIS Act (see s 33(5)(c) of the NDIS Act). If so satisfied, the Tribunal must also consider the other factors as set out in s 33(5)(a), (b) and (d) to (f) of the NDIS Act.
Based on the NDIA’s contentions referred to in paragraph [11] above, the Tribunal considers that the main issues arising in this application include:
(a)whether the Requested Supports are likely to cause harm to JFXZ, noting that Rule 5.1(1)(a) of the Support Rules provides that a support will not be funded under the NDIS if it is likely to cause harm to the participant;
(b)whether the Requested Supports will, or are likely to be, effective and beneficial for JFXZ (see s 34(1)(d) of the NDIS Act);
(c)whether the Requested Supports represent value for money in that the costs are reasonable, and relative to the benefits to be achieved and the cost of alternative supports (see s 34(1)(c) of the NDIS Act); and
(d)whether the Requested Supports are most appropriately funded through the NDIS or more appropriately funded through the general health system (see s 34(1)(f) of the NDIS Act).
EVIDENCE AND SUBMISSIONS
Documentary evidence
Pursuant to its obligations under ss 37 and 38AA of AAT Act, the NDIA lodged a set of documents on 30 April 2021 (the T-Documents).
On 9 December 2021, the NDIA, on behalf of both parties, lodged a joint hearing tender bundle (HTB), comprising 742 pages. The HTB included the following evidence:
(a)a letter by Associate Professor (A/P) George Williams, JFXZ’s treating Paediatrician, dated 9 August 2021;[15]
[15] Refer HTB at page 27 & 28.
(b)an article published in 2006 about the use of dynamic Lycra orthosis in the treatment of scoliosis;[16]
[16] Ibid at pages 29 to 36.
(c)an undated document entitled “SpineCor treatment for children” by Mr Tim Cook, CEO, Spine Corporation Limited;[17]
[17] Ibid at page 37.
(d)an E-book entitled “Ehlers-Danlos Syndrome: A Multidisciplinary Approach” published online in 2018;[18]
[18] Ibid at pages 38 to 407.
(e)information published by the Royal Prince Alfred Hospital on “Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD)”, dated 9 May 2019;[19]
[19] Ibid at pages 408 & 409.
(f)a functional assessment report by Ms Kimberly Elter, Occupational Therapist, Family Connections, dated 28 September 2021;[20]
[20] Ibid at pages 410 to 419.
(g)an expert medical report by Dr Nair dated 21 October 2021;[21]
(h)two emails from the NDIA to Mrs JFXZ dated 2 February 2021 advising that JFXZ’s request to fund the spinal orthosis was declined;[22]
(i)extracts from The Sydney Children’s Hospitals Network website regarding “Orthopaedics at The Children’s Hospital at Westmead” and “Spine referral webform”;[23]
(j)a set of medical and clinical records produced under summons by A/P Williams; [24]
(k)a set of medical and clinical records produced under summons by Dr Dean Zekis, Osteopath;[25]
(l)a set of medical and clinical records produced under summons by Dr Vinay Kulkarni, Orthopaedic Surgeon (spinal surgeon), Westmead Hospital;[26]
(m)the T-Documents including:
(i)NDIS Prosthetics & Orthotics Assistive Technology Assessment Template form completed by Mr Victor Phan, Orthotist, Korthotics Pty Ltd, on 3 March 2021 recommending a DMO suit for JFXZ,[27] and a quotation for the DMO suit showing a cost of $3,823.80;[28] and
(ii)NDIS General Assistive Technology Assessment Template form completed by Dr Dean Zekis, Osteopath, Korthotics Pty Ltd, on 3 March 2022, recommending two SpineCor dynamic braces for JFXZ,[29] at the cost of $11,200.[30]
[21] Ibid at pages 447 to 456.
[22] Ibid at pages 458 to 461.
[23] Ibid at pages 462 to 464.
[24] Ibid at pages 466 to 519.
[25] Ibid at pages 520 to 523.
[26] Ibid at pages 524 to 526.
[27] Refer T-Documents at T10.
[28] Ibid at T9.
[29] Ibid at T11.
[30] Ibid at T11 on page 56. While nothing turns on it, Dr Zekis provided a quotation for the two SpineCor braces showing a total cost of $11,000 – see T-Documents T12.
Submissions made prior to the hearing
The parties lodged the following submissions in this application:
(a)NDIA’s statement of facts, issues and contentions dated 3 November 2021 (NDIS’s SFIC);[31] and
(b)Applicant’s statement of facts, issues and contentions dated 24 November 2021 (JFXZ’s SFIC).[32]
[31] Ibid at pages 1 to 21.
[32] Ibid at pages 22 to 26.
Oral evidence
At the hearing, Mr and Mrs JFXZ gave oral evidence as lay witnesses, and the following expert witnesses were also called to give evidence:
(a)Mr Victor Phan and Mr Merrick Smith, both Orthotists at Korthotics Pty Ltd; and
(b)Dr Nair.
Further report obtained from A/P Williams, further closing submissions made after the hearing and email from Mr JFXZ after closing submissions attaching letter by Dr Gray
This application took quite an unusual course. At the hearing, it was identified by the Tribunal that there was a significant gap in the medical evidence. The Tribunal indicated to Mr JFXZ that it wanted to know that he had the backing of JFXZ’s doctors in relation to the Requested Supports.[33] The Tribunal made directions for a further medical report to be obtained from A/P Williams, who has been the treating Paediatrician for JFXZ since birth, containing answers to a list of questions that the parties were directed to prepare jointly. This resulted in a medical report being issued by A/P Williams on 18 March 2022 (A/P Williams’s Report).
[33] Refer Transcript at P-83.
The Tribunal indicated to the parties at the hearing, that it was open to them to request cross-examination of A/P Williams, given that a detailed report would be lodged by him after the hearing.[34] The Tribunal did not receive any such request from either party. The parties proceeded to lodge the following written closing submissions after A/P Williams’s Report became available:
(a)the NDIA’s closing submissions dated 12 April 2022 (NDIA’s Closing Submissions); and
(b)the JFXZ’s closing submissions dated 26 April 2022 (JFXZ’s Closing Submissions).
[34] Ibid at P-82.
After the hearing and the lodgement of closing submissions by the parties, Mr JFXZ sent an email to the Tribunal on 1 June 2022 attaching a medical letter by Dr Angus Gray, Paediatric Orthopaedics Scoliosis & Limb Lengthening, Sydney Orthopaedic Specialists, dated 17 May 2022, in respect of JFXZ. The NDIA sent an email to the Tribunal on the same day (that is, 1 June 2022) stating that it objected to the provision of further evidence by Mr JFXZ because the evidence was closed, and the decision was reserved. The Registry of the Tribunal emailed the parties on the same day and advised that Mr JFXZ would need to make an application to reopen this matter (if the Parents wished for Dr Gray’s letter to be received into evidence); and that any such application should identify the reasons why the Tribunal should reopen the case. The Tribunal did this as it was likely that if the Tribunal granted an application to reopen the matter, a resumed hearing would need to be listed to allow the parties to recall the expert witnesses to question them about the medical opinions expressed by Dr Gray. The Tribunal requested that Mr JFXZ indicate to the Tribunal within seven days whether he wished to make such an application to the Tribunal. The Tribunal did not receive a reply from Mr JFXZ. Registry staff contacted him again on 1 August 2022 to ask if he was intending to make any such application. Mr JFXZ sent an email to the Tribunal on 1 August 2022 stating: “We do not request that the case be reopened for any new evidence such as the letter from Dr Gray. Our wish is not to delay a [decision] being handed down as soon as possible”.
BACKGROUND AND MEDICAL HISTORY
JFXZ is a 14-year-old girl and lives with the Parents. JFXZ attends school five days per week.
In January 2013, JFXZ was diagnosed with Ehlers Danlos Syndrome (Type 3) (EDS). She was diagnosed with scoliosis in 2016,[35] and adolescent idiopathic scoliosis in July 2019.[36]
[35] Refer A/P Williams’s Report on page 1.
[36] Ibid at page 3.
EDS refers to a set of inherited disorders that affect connective tissues supporting the skin, bones, blood vessels, and other organs and tissues in the body. It is characterised by a variable degree of joint hypermobility, skin hyperextensibility, easy bruising and skin fragility, and causes JFXZ to have low muscle tone, muscle fatigue, hypermobility and to be prone to joint dislocation and subluxation.[37] A/P Williams states that JFXZ has “generalised hypotonia with hypermobility”.[38] He states that she also has “moderate hypermetropia of her eyes”, “hyperhidrosis (excessive sweating)”, asthma and eczema.[39]
[37] Refer medical reports issued by A/P Williams on 17 January 2013 and 18 March 2022. Refer also to page 23 of set of documents produced by A/P Williams under summons.
[38] Refer A/P Williams’s Report at page 1.
[39] Ibid.
Treating Paediatrician – Associate Professor Williams
A/P Williams saw JFXZ on 27 February 2022 and confirmed that she had both thoracic and lumbar scoliosis. Her weight was recorded as 65.9kgs, and her height as 174cm. He stated that she was wearing a DMO suit at this consultation.[40] A/P Williams reported that JFXZ’s current recommended treatment included:[41]
(a)seeing a Paediatric Spinal Orthopaedic Surgeon twice a year and an Occupational Therapist four time a year;
(b)undertaking regular exercise to improve her low muscle tone and hypermobility, but also to curtail further scoliosis;
(c)the accommodation of her EDS and scoliosis in the school and home settings;
(d)physiotherapy; and
(e)“spinal support to prevent further exacerbation of scoliosis and protection of her muscles and joints”.[42]
[40] Ibid.
[41] This list of recommended treatments is not exhaustive.
[42] Refer A/P Williams’s Report at page 2.
A/P Williams explained that on 21 October 2016, he had referred JFXZ to Dr Michael Bellemore, Paediatric Orthopaedic Surgeon. Dr Bellemore examined her in January 2017 and diagnosed JFXZ with scoliosis in the thoracic region from T5-T10 measuring 20 degrees. Dr Bellemore considered the scoliosis at that stage to be “mild” and he recommended further X-rays and review in June 2017. An X-ray of JFXZ’s spine was undertaken in mid-2017 and Dr Bellemore provided medical advice that JFXZ did not require bracing at that time.
Dr Bellemore also saw JFXZ in relation to lateral collateral leg damage of her right ankle after she sprained her ankle in 2016. In January 2017, Dr Bellemore considered that she did not require orthotics for her sprained right ankle.
In A/P Williams’s Report, he states that JFXZ developed sciatica of her right leg in early-2018. In this year, she saw Dr Bellemore who considered that the reported “pins and needles” did not require intervention, noting that JFXZ was receiving hydrotherapy at that time.[43]
[43] Ibid.
In June 2019, an EOS (low dose X-ray) was performed on JFXZ’s spine and lower limbs. This revealed a leg length discrepancy of 0.2cm with the left leg being longer than the right.[44] It also showed there was a mild thoracic spinal curve convex to the right with the apex at T7 and a thoracolumbar curve convex to the left with the apex at L2/3.
[44] Ibid at page 3.
Dr Bellemore saw JFXZ on 9 July 2019 and considered there to be no progression of the scoliosis since 2016, but in the previous 12 months there had been “significant progression of the curve” and that she would require “brace treatment”.
Dr Bellemore referred JFXZ to an Adult and Paediatric Spinal Surgeon, Dr Kulkarni, who saw her on 11 October 2019. He recommended that she undergo X-ray review in January 2020 and consult with the Orthotist at The Children’s Hospital at Westmead.[45] A/P Williams noted that JFXZ was wearing orthotics in her shoes.
[45] Ibid.
In A/P Williams’s Report, he noted that JFXZ was fitted with a Boston-type rigid brace (Boston Brace) at the Orthotic Clinic at The Children’s Hospital at Westmead; and that the Boston Brace had caused “irritation, overheating, unbalancing and fatigue”.[46] A second rigid brace was fitted in February 2020 and similar complications were reported to have occurred; and that the brace could only be worn eight to 14 hours per day.[47] A/P Williams explained that JFXZ was having difficulty regulating her temperature whilst wearing the Boston Brace (and Boston t-shirt) and was required to be in an air-conditioned environment.
[46] Ibid.
[47] Ibid.
A/P Williams noted that JFXZ saw Dr Petros Kattou, a visiting Orthopaedic Surgeon and SpineCor advocate (from Greece), in February 2020; and that Dr Kattou and Dr Zekis, Osteopath from SpineCor, had recommended the SpineCor brace to JFXZ.[48] JFXZ was fitted with a SpineCor brace in mid-February 2020. A/P Williams reports that “great improvement was noted”, but the brace only lasted nine months due to “wear and tear” and the washing of it.[49]
[48] Ibid.
[49] Ibid.
A/P Williams noted that in late-May 2021 a SpineCor Comfort brace was fitted to JFXZ “with good effect”.[50] Subsequently, in November (2021), JFXZ wore a DMO suit which A/P Williams stated had “added flexibility in managing her spinal support”. He said that he was informed by JFXZ’s mother that JFXZ was wearing the DMO suit in July 2020 and that she required about two per year (at the cost of $3,148.80). He said that JFXZ was also wearing the SpineCor suit which cost $5,000, and they were being fitted by Dr Zekis.
[50] Ibid.
A/P Williams was asked whether it was his practice to directly treat children with scoliosis, or whether he would refer them to another specialist. A/P Williams stated in his report that he did not treat children with scoliosis and would refer them to Paediatric Spinal Surgeons.[51] He also said he was not an expert or experienced in the management of scoliosis.[52] In response to the question of who was currently overseeing the management of JFXZ’s scoliosis condition, A/P Williams stated that JFXZ was being seen by:
(a)Dr Nair (who, the Tribunal notes, is not one of JFXZ’s treating doctors but instead undertook an independent assessment of JFXZ for the purpose of this proceeding);
(b)Mr Phan, in 2021, who had recommended the SpineCor support;
(c)Mr Abdul Najjarine, a Podiatrist, who in March 2021 had recommended “custom orthotic devices with gait plates for sport” for JFXZ; and
(d)Dr Zekis, Osteopath, Zekis Osteopathic Clinic.[53]
[51] Ibid at page 4.
[52] Ibid at page 5.
[53] Ibid at page 4.
A/P Williams states in his report that Dr Zekis had opined on 2 March 2022 that JFXZ had “compensatory aggressive progressive idiopathic scoliosis and hyperhidrosis”; and that Dr Zekis had recommended “appropriate bracing for improvement of 30%”. Dr Zekis also recommended “Vagus nerve stimulation for hyperhidrosis”. Dr Zekis had noted that JFXZ no longer attended the Scoliosis Clinic at The Children’s Hospital because Mrs JVXZ considered that it had not “add[ed] value” to the management of JFXZ’s condition.[54]
[54] Ibid.
A/P Williams noted that Dr Nair and Dr Kulkarni had recommended that JFXZ’s scoliosis be managed at a “teaching hospital”.[55]
[55] Ibid.
A/P Williams noted that the Parents did not believe that Dr Kulkarni’s opinions, as set out in his correspondence, were helpful; and they considered that he had little experience with EDS.[56] He noted that the Parents felt that Dr Kulkarni “leaned towards surgery rather than conservative management”.[57] A/P Williams had consulted with Dr Kulkarni as part of the process of preparing his report on 18 March 2022. He said that Dr Kulkarni had informed A/P Williams that he was happy to see JFXZ again.[58] Notably, there was no statement made in A/P Williams’s Report reporting his conversations with Dr Kulkarni, that he approved of JFXZ being fitted with a brace.
[56] Ibid at page 5.
[57] Ibid.
[58] Ibid.
A/P Williams noted in his report that the literature suggests bracing, exercise and surgery as treatments for scoliosis; with surgery being indicated where the “Cobb angle” is more than 47% or the patient had respiratory difficulty and constant pain.[59] Specifically, A/P Williams refers to a medical article, “2016 SOSORT guidelines: orthopaedic and rehabilitation treatment and idiopathic scoliosis during growth”, Negrini S et al. Scoliosis & Spinal Disorders, (2018), 13:3” (the Negrini Article). A/P Williams described the Negrini Article as an international review initiated by world experts, and published in 2018, providing guidelines in the form of flow charts for clinical practice.
[59] Ibid.
A/P Williams stated that the Negrini Article recommended “bracing, exercise and surgery”, with:
(a)25 recommendations made for bracing;
(b)12 recommendations made for physiotherapeutic scoliosis-specific exercises (PSSE) to prevent scoliosis progression during growth;
(c)6 recommendations made for PSSE during brace treatment;
(d)2 recommendations made for other conservative treatments;
(e)3 recommendations for respiratory function and exercises;
(f)6 recommendations for general sports activities; and
(g)14 recommendations for assessment.
The Tribunal notes the following information provided in the Negrini Article (emphasis added):
To stop curve progression at puberty (or possibly even reduce it)
Recently, a multi-centre RCT demonstrated that bracing is effective at preventing progression to the surgical range (defined as ≥ 50°) [87], although on average the curves did not improve. Moreover, a long-term RCT found that PSSE improved Cobb angles at skeletal maturity in patients with AIS [88]. Current evidence suggests that conservative treatment for scoliosis is effective at stopping curve from progression, as well as improving the curves at skeletal maturity.
It is possible and usually sufficient to prevent further progression, even if recent research papers conducted according to the SRS criteria have shown that it is also possible to obtain some amount of curve correction [89,90,91,92,93].
A/P Williams noted that the Parents were happy with JFXZ’s use of the SpineCor and DMO suits.
A/P Williams recommended that JFXZ should see Dr Andrew Cree, who is the Director of the Spinal Clinic at The Children’s Hospital at Westmead, and that this Clinic will refer children to the Orthotic Department at this hospital for bracing.[60] A/P Williams was asked whether he agreed that a dynamic bracing suit would benefit JFXZ with living with EDS, hypermobility, and her other conditions. A/P Williams answered: “Yes, as it appears to have helped”.[61] When asked whether a rigid brace could cause problems or risks with JFXZ’s conditions, he said it could.[62]
[60] Ibid at page 4.
[61] Ibid at page 5.
[62] Ibid.
A/P Williams was asked whether he would agree that an Orthotist or Paediatric Osteopath would be well suited to recommend and fit a dynamic brace for JFXZ who has scoliosis secondary to EDS. He did not answer this question, stating he had no experience because he does not work with these specialists.[63]
[63] Ibid.
Independent Assessment by Consultant Orthopaedic Surgeon – Dr Anil Nair
Following an independent assessment of JFXZ by Dr Nair on 29 September 2021 (by videoconference due to the COVID-19 pandemic), Dr Nair prepared a medical report dated 21 October 2021 (Dr Nair’s Report). Dr Nair stated that he was “satisfied that [the] physical environment and technological equipment used was adequate for undertaking this assessment effectively”.[64] Dr Nair noted that “[m]eaningful physical examination was not possible due to the constraints of Telehealth”.[65]
[64] Refer HTB at page 448.
[65] Ibid at page 449.
Dr Nair is a spinal surgeon, and he is a Fellow of the Royal Australasian College of Surgeons and the Australian Orthopaedic Association.[66] He told the Tribunal at the hearing that his current role is to treat and operate on adult spinal patients. He said he also assesses paediatric patients, but he does not surgically treat them. Dr Nair said that 70 to 80 percent of his work is clinical work as opposed to undertaking medicolegal work.[67]
[66] Ibid at page 457.
[67] Refer Transcript at P-77.
In reference to JFXZ’s functional capacity, Dr Nair noted that JFXZ had “difficulty with mobility”, “difficulty with function in school” and that she is “reliant on her parents for assistance for multiple aspects of her daily life”.[68]
[68] Refer HTB at page 451.
Dr Nair noted that JFXZ has been treated by a A/P Williams for her EDS; and she had previously consulted Orthopaedic Surgeon, Dr Bellemore, and Dr Kulkarni, whom he described as a “spinal surgeon”. Dr Nair also noted JFXZ was currently being managed by an Osteopath, Mr Zekis.[69]
[69] Ibid at page 448.
Dr Nair recorded JFXZ’s account of her experience of treatment by the Scoliosis Clinic at The Children’s Hospital at Westmead, where she was prescribed a rigid Boston Brace. Dr Nair recorded that JFXZ told him the Boston brace was “uncomfortable and resulted in fatiguing, gait disturbances as well as falling over”.[70] He further recorded JFXZ’s complaint about the Boston Brace being “uncomfortable during the warmer weather”.[71]
[70] Ibid at page 448.
[71] Ibid.
Dr Nair confirmed that JFXZ has scoliosis secondary to EDS and opined that the “magnitude of the major [and] compensatory curves” was “likely to progress over time”.[72] He stated that it would be typical for a spinal surgeon to monitor an adolescent with scoliosis of that magnitude. He explained that addressing curves of a lesser magnitude is technically less challenging and less risky, than addressing larger curves, which he said are “typically managed by a musculoskeletal unit at a quaternary teaching hospital”.[73]
[72] Ibid at page 450.
[73] Ibid.
Specifically, Dr Nair states in his report as follows (emphasis added):[74]
Yes, I would expect a child with a presentation like JFXZ’s to continue to be managed by a paediatric scoliosis clinic or orthopaedic surgeon experienced in scoliosis.
I would recommend continued clinical as well as radiological review by a deformity spinal surgeon which are typically orthopaedic spinal surgeons. Consultation with a deformity spinal surgeon does not mandate surgery. However, it is imperative to monitor curve progression. Rapid curve progression may be an indication for surgery. The fact that JFXZ has reached menarche typically heralds the onset of fairly rapid curve progression.
[74] Ibid at page 451.
Dr Nair confirmed that JFXZ no longer attended the Scoliosis Clinic at The Children’s Hospital at Westmead, noting that the Parents “felt the clinic did not add value”.[75] Dr Nair further stated that he would expect a child with JFXZ’s presentation to continue to be monitored by a Paediatric Scoliosis Clinic or Orthopaedic Surgeon with experience in scoliosis; and that he “would recommend continued clinical as well as radiological review by a deformity spinal surgeon which are typically orthopaedic surgeons”.[76] At the hearing, Dr Nair said that JFXZ should be managed by a “quaternary deformity clinic”, such as the Spinal Deformity Clinic at The Children’s Hospital at Westmead, with input from a spinal deformity surgeon.[77] He said that paediatricians typically do not treat scoliosis as such, and their role is to know when to refer a patient to deformity surgeons. Given Dr Nair’s area of speciality qualifications, training and practice, the Tribunal accepts this evidence.
[75] Ibid at page 450.
[76] Ibid at page 451.
[77] Refer Transcript at P-71.
In Dr Nair’s Report, he noted that JFXZ continually wore the brace prescribed by her Orthotist. When asked whether the orthosis needed reassessment, Dr Nair stated that as a rule of thumb, braces are continually worn and assessed approximately every two months by orthotists; and that “for further details about the technical nuances of a particular brace, [he] would suggest consulting an [orthotist] as opposed to a spinal surgeon”.[78]
[78] Refer HTB at page 452.
Dr Nair confirmed that he is “not familiar” with the SpineCor Comfort brace, stating that “it is not a brace that is typically prescribed by spinal orthopaedic surgeons”.[79] He said that in general, this bracing system is “almost exclusively used for skeletally immature individuals”, and “the duration of the bracing varies according to the individual patient”.[80]
[79] Ibid at page 453.
[80] Ibid.
At the hearing, Dr Nair was asked to describe the primary purpose for “spinal bracing generally”. He answered:
Broadly speaking, bracing is utilised to reduce the risk of curve progression in patients with scoliosis, and mitigate the requirement for surgery.[81]
[81] Refer Transcript at P-70.
Dr Nair was asked to comment on whether bracing was used to enable a person to undertake activities of daily living, or whether it was a clinical treatment of a health condition, aimed at improving the health status of JFXZ. Dr Nair said that they were simplistic categories, but it was more likely to fall into the latter category.[82]
[82] Ibid.
At the hearing, Dr Nair confirmed that he had reviewed the EOS scans of JFXZ’s spine performed on 15 August 2020 and 25 October 2021. He was asked to comment on whether the bracing of JFXZ’s spine “was working”. Dr Nair told the Tribunal that both curves were progressing, which he said was not atypical of growth. He reiterated that the brace reduced the rate of progression of the curve, as opposed to stopping it.[83] Later on, Dr Nair was asked whether the progression of JFXZ’s scoliosis was “rapid”. He said they were not progressing in a “rapid or a dangerous fashion”, but they were progressing.[84] He referred to a further EOS scan of 22 June 2019 and compared it to the subsequent scan of 13 January 2020 which was performed while JFXZ was wearing the Boston Brace. Dr Nair said that the, “proximal curve corrected quite significantly in the Boston brace. However, the distal curve didn’t”. He said he did not think they were comparing “apples with apples” because JFXZ was wearing different braces during the successive scans. Nonetheless, he still said he thought there had been a trend of progression.[85] Again, given Dr Nair’s area of speciality qualifications, training and practice, the Tribunal accepts this evidence.
[83] Ibid at P-71.
[84] Ibid at P-76.
[85] Ibid.
Dr Nair said there was “no material progression” or “significant progression” between April and October 2021. Mr JFXZ told the Tribunal at the hearing that JFXZ had been using the SpineCor brace for over 12 months (prior to 14 December 2021).[86] Mr JFXZ asked Dr Nair the following question at the hearing, “You could almost say that there hasn’t been any adverse things that have affected the spine in that time?”, to which Dr Nair answered (emphasis added):
Well, I can't - I would be very surprised if the brace was causing harm. I would be very, very surprised…[87]
[86] Refer Transcript at P-77.
[87] Refer Transcript at P-76.
Dr Nair was asked whether the SpineCor Comfort Brace would prevent spinal surgery as a result of scoliosis. He stated that it “is impossible to empirically answer this question”.[88] He recommended “serial clinical and radiological review”, with or without the SpineCor Comfort Brace.[89] Dr Nair stated in his report that it is important to note that despite bracing, the serial EOS scans have revealed the progression of JFXZ’s scoliosis deformity.[90] At the hearing, Dr Nair accepted that if surgery was required for a person with EDS, that it would be risky and it would be associated with complications.[91] He said the relevant specialist who would be best placed to provide advice about surgical options “in the face of EDS”, was a deformity spinal surgeon.[92]
[88] Refer HTB at page 453.
[89] Ibid.
[90] Ibid.
[91] Refer Transcript at P-72.
[92] Ibid.
Dr Nair was asked about the appropriateness of the SpineCor for treating a child with EDS. He said he was “unable to answer” this question, as he did not have any experience with the SpineCor brace.[93] However, he noted JFXZ’s preference for the custom brace, over the Boston Brace. He further stated that while custom bracing may be appropriate, he would recommend consultation with a spinal deformity surgeon; and that in his opinion, the brace should be prescribed by a spinal surgeon.[94] Again, given Dr Nair’s area of speciality qualifications, training and practice, the Tribunal accepts this evidence.
[93] Refer HTB at page 453.
[94] Ibid at page 454.
Dr Nair confirmed that he was also not familiar with the Korthotic suit.[95] Dr Nair was asked whether this suit would prevent spinal surgery. Dr Nair’s response was identical to that as summarised in paragraph [67] above; with all other responses to the effect that he was “unable to answer” as he had no experience with the brace in question, other than noting JFXZ’s preference for a custom-made suit.
[95] Ibid.
At the hearing, Dr Nair told the Tribunal that during his time working in scoliosis units, in Sydney and in Canada, that the use of dynamic braces to slow down curve progression, “were not utilised”.[96] He qualified this answer by stating that he last worked in a scoliosis unit in 2014.[97] He was unable to give evidence as to why they were not utilised.[98]
[96] Refer Transcript at P-72.
[97] Ibid.
[98] Ibid.
Under cross-examination, Dr Nair said he would not normally prescribe treatment for hypermobility or EDS.[99] He clarified that they would not treat hypermobility, because it is not a “treatable condition”. He said they would treat the sequelae of hypermobility and would try to reduce the risk of the patient requiring surgery because it would be complicated, and due to the high rates of morbidity. He said they would refer the patient to “the allied health professionals in the department”.[100] He said that if he has a patient with scoliosis who only requires observation of clinical and radiological parameters, he will happily do that himself. If, however, the patient required “ancillary support”, he said he would refer them to a “quaternary hospital” (the spinal deformity and scoliosis unit), because he considers them to be “better equipped in terms of resources”.[101] Dr Nair gave evidence that scoliosis patients are, broadly speaking, complex patients who require “lots of ancillary support” and that most of his peers would manage them in a “quaternary clinic”.[102]
[99] Ibid at P-73.
[100] Ibid.
[101] Ibid.
[102] Ibid at P-74.
Dr Nair was asked who would monitor a patient if there was a problem with the brace, such as how it is fitted and whether it has the desired effect. Dr Nair stated that it would be “multiple professionals in the clinic”, referring to the physiotherapists, occupational therapists, and the medical professionals in the clinic, specifically, the spinal surgeons, the Fellows, and the Registrars.[103] He said he would be surprised if there were osteopaths working in The Children’s Hospital, “performing bracing”, but he could not be categorical about that.
[103] Ibid.
Mr JFXZ asked Dr Nair at the hearing whether a brace could facilitate a direct functional outcome for someone with EDS. Dr Nair gave the following evidence (emphasis added):[104]
Look, I'll ask for some latitude. I have not seen that, but certainly it would not be a stretch - one wouldn't have to stretch imagination to imagine that a less cumbersome, lightweight brace is less demanding on the already fragile musculoskeletal system of a child. I have not seen a direct - or child with a connective tissue disorder. I have not seen improvement in neurological function as a consequence of a brace, however it would be logical to say that a lightweight brace would be better tolerated and allow for greater mobility.
[104] Ibid.
During re-examination, Dr Nair clarified that his evidence about this was by reference to comparing it to a rigid, or “plaster of Paris”-type brace.[105]
[105] Ibid at P-77.
Dr Nair said he was not able to express an opinion about whether dynamic bracing could be beneficial in the long-term for someone with hypermobility, as he was not familiar with this type of bracing.[106] Dr Nair acknowledged that treating a person with scoliosis by surgery is risky and the complication rate is “very significant”.[107]
[106] Ibid at P-75.
[107] Ibid.
Former treating Spinal Surgeon, Dr Kulkarni
On 11 October 2019, Dr Vinay Kulkarni, an adult and paediatric Spinal Surgeon, wrote two letters in relation to JFXZ. In the first letter of this date, he stated that he had seen JFXZ and her Parents in relation to her scoliosis, noting that she had been wearing her brace well since it had been fitted in September. He noted that JFXZ had not complained of any skin issues. He stated in this letter that JFXZ “has an excellent correction of her lumbar curve down to 20 degrees”. He considered that it was “probably worthwhile trying to brace her proximal curve also given that it has not corrected with control of the bottom curve”. Dr Kulkarni provided the following medical opinion (emphasis added): [108]
She is still premenarchal. I have discussed the current treatment and long-term prognosis of this curve. Hopefully we can keep this curve controlled throughout skeletal growth, with the aim of keeping the curve to its pre-brace levels. This may sill necessitate surgical treatment in the future, however this will be on a much more favourable curve to treat. Other options of vertebral body tethering do exist, however are very much in the experimental phase at present.
I will plan to see her again after the new brace is fitted for a clinical review. She should have another X-ray later in the year.
[108] Refer HTB at page 524.
In Dr Kulkarni’s second letter of the same date, he stated that he had seen JFXZ previously in Dr Bellemore’s rooms to provide an opinion on the management of her scoliosis. He noted that she had EDS and had previously recommended a spinal brace to help control her curve during the growth spurt. He referred to the plan to see JFXZ in January 2020 after she has another EOS scan and that he would so with the Orthotist from The Children’s Hospital at Westmead. He stated in this letter that JFXZ required two EOS scans per year for her brace treatment and scoliosis monitoring, and that after skeletal maturing, the frequency may be reduced to once annually.[109]
[109] Ibid at page 525.
On 17 January 2020, Dr Kulkarni wrote to the Orthotics Department at The Children’s Hospital at Westmead requesting, “Could you please try [JFXZ] in a different brace to control both her thoracic and lumbar curves. The current lumbar correction is excellent”.[110]
[110] Ibid at page 526.
Concurrent evidence given by two treating Orthotists
Mr Phan, Orthotist, Korthotics Pty Ltd, was called by the Parents to give evidence at the hearing. Mr Phan said he had treated JFXZ since February 2021.[111] Mr Phan’s supervisor, Mr Merrick Smith, Orthotist, Korthotics Pty Ltd, with 40 years’ experience, later joined Mr Phan concurrently in giving evidence at the hearing (at the request of Mr Phan). Mr Phan said he was not an expert on EDS, but that Mr Smith had extensive knowledge about this condition.
[111] Refer Transcript at P-48.
Mr JFXZ asked Mr Phan whether a dynamic brace could be beneficial or harmful when used to assist with scoliosis. Mr Phan said that any bracing system could have a “certain degree of risk” when it came to ensuring that the device is doing its job properly, in terms of holding the progress of scoliosis. He referred to considerations of whether the device was fitted and measured properly, and issues of compliance when using the device. In relation to compliance, Mr Phan said that there was usually a higher level of compliance, as well as acceptance by the user, because it was “a lot more subtle” and was “thinner”. It may also be used in conjunction with other therapies, such as water activities and may be used while the person is asleep as there is a less degree of heat intolerance.[112]
[112] Ibid at P-49.
The Tribunal asked Mr Phan to provide an opinion about whether there was a biomechanical trade-off when using a dynamic brace instead of a rigid brace, because it did hold the person in such a rigid position. Mr Phan said there was a “high level of requirement for the suit to be correctly donned”. He said that the garment was quite flexible and getting the correct position was “absolutely essential”. He said this was one concession to consider when it came to the DMO suit, compared to the rigid brace.[113] He then deferred to Mr Smith to answer this question more broadly.
[113] Ibid.
Mr Smith explained to the Tribunal that with a rigid bracing system, the patient is very braced and cannot flex laterally or anteriorly, or extend through the spine. He said there were two types of Boston braces. The original one designed in 1972 with a “three-point pressure system” and a new 3D bracing system, which is based on a European bracing system. Mr Smith said the “nice thing” about the dynamic bracing system is that it incorporated “it all in, whereas the patient actually exercises in and out of the brace”.[114] He said patients could swim in the dynamic brace. He explained the panels used on the DMO was a 3D corrective force, and “we can also put external rotational forces onto it as well”. He said it incorporates, “the static system or the rigid system, but in a dynamic sense”.[115]
[114] Ibid at P-51.
[115] Ibid at P-52.
When Mr Smith was asked why the original rigid braces have not been decommissioned, he said that was a lot of conjecture about rigidity versus flexibility. He said he was not going to talk about it because he was not a chiropractic physician. He said the dynamic brace does provide the patient with more flexibility and allows them to do more with their lifestyle. He said there was “little rejection related to these bracing systems because it is a garment to the skin” and is not applied over the top of a garment.
Mr Smith gave evidence that a dynamic brace had been made available to JFXZ on 26 November (2021). When asked how it was going, Mr Smith said they had not reviewed it because it was “too early to tell”. He said he was due to review JFXZ the following week or in early-2022 and that X-rays were the only way to determine if there was a correction and/or there was a holding of the curve. Mr Smith said that the brace is designed to prevent the curve getting any worse.[116]
[116] Ibid at P-53.
The Tribunal asked Mr Smith what checks he had made with JFXZ’s medical practitioners to discuss the dynamic brace he was proposing to offer JFXZ. Mr Smith answered this question as follows:
No, not at all. And the reason I state that is because looking at her condition - and we were treating the scoliosis - because of my experience and so on, most of the physicians that refer to us, all they will say is, "We'll leave it up to you."
Mr Smith said that they are not specialists in bracing systems or orthotics in general. He gave evidence that a specialist could say what type of brace they wanted for the patient and Mr Smith said that he would respond and provide his reasoning. Mr Smith said that with JFXZ, “knowing her condition of EDS and working with those patients”, she is very flexible which is why his option for her “straight up” was a DMO (suit). He said she still had a fair bit of growth to go, and the X-rays determined that as well. Mr Smith referred to having 3,500 scoliosis patients in his career and was able to read X-rays and understood growth patterns. Mr Smith said that in “probably” 10 per cent of cases had the treating medical specialist told him what type of brace to fit to a patient.[117]
[117] Ibid at P-54.
Under cross-examination, Mr Smith accepted that “normally” scoliosis and the treatment of scoliosis is assessed by a spinal surgeon; and that a lot of patients go through the paediatric system and would then be referred through the clinics. Mr Smith said that his referrer base was not always orthopaedics, and could also be neurosurgeons or paediatrics. Mr Smith accepted that it was imperative to monitor curve progression.[118] Mr Smith accepted that he was not medically qualified and could not give advice about whether surgery was indicated. He agreed that an orthopaedic surgeon would need to determine that. He also added that a neurosurgeon may also do so.[119]
[118] Ibid at P-56.
[119] Ibid at P-57.
Mr Smith accepted that the recommendation of the initial treatment of bracing and/or surgery should be determined by a medical practitioner.[120]
[120] Ibid.
Mr Smith was asked during cross-examination which medical practitioner was providing advice or clinical and radiological review of JFXZ’s scoliosis. His confirmed that it was Dr Zekis, who he described as “a doctor of chiropractic medicine”. Mr Smith also confirmed that Dr Zekis had referred JFXZ to him. Mr Smith gave evidence that he was not aware of any medical practitioner having referred the need for bracing of JFXZ to Mr Smith. He agreed that Dr Zekis was not a medical practitioner.[121]
[121] Ibid at P-58.
The Tribunal notes the following exchange with Mr Smith at the hearing (emphasis added):[122]
MEMBER: And with a person who has EDS that seems to be manifesting in a serious way, does that raise any alarm bells for you, that you would fit a brace based on what another allied health professional has asked you to do, rather than wanting to speak with the medical practitioner?
MR SMITH: No, not at all. The reason I also state that is because then I can reflect to America. In the southern states of America the chiropractors actually have the first bite at the apple, so to speak, when it comes to scoliosis. In the northern part of America, it's actually the orthopaedic surgeons. So, what can I say? The situation here, I can understand what chiropractors were looking at. I can understand how to read an X-ray. I can understand the progression of the curvature. They too also understand spinal mechanics and they too are also looking at bracing to allow the correction to come into the curvature. So, it was a continuation of service but with a different type of orthosis that would be more comfortable and more corrective, I might add.
[122] Ibid at P-59.
However, the Tribunal notes that this evidence by Mr Smith was somewhat inconsistent with his opinions as set out in paragraphs [87] and [88] above, where he accepted that the recommendation of the initial treatment of bracing and/or surgery should be determined by a medical practitioner.
CONSIDERATION
As required by Rule 3.2(b) of the Support Rules, the Tribunal has considered the lived experience of JFXZ.
Both Mr and Mrs JFXZ gave evidence at the hearing. Mr JFXZ gave evidence that his daughter’s condition was quite complex and there is not a lot of information readily available about it.[123] He said there were a number of things that affected the daily living of his daughter and they had been trying to support her to have a good quality of life, especially leading into high school. He told the Tribunal that his wife was JFXZ’s full-time carer and picks her up from school. He said JFXZ may return home from school if it gets too warm. He said at this stage, JFXZ does not need funding for a wheelchair.
[123] Ibid at P-5.
Mr JFXZ told the Tribunal at the hearing that he had realised there were a lot of problems with the rigid-type bracing, and that it could lead to muscle deterioration. He also said it could affect the skeletal development of the person. He said a person with EDS can have problems with their muscles and skeletal development, and he said they had found out that the rigid brace was not “best practice”.[124] Mr JFXZ said he raised these issues with Dr Kulkarni after JFXZ had been wearing the brace for 12 months.
[124] Ibid at P-10.
Mr JFXZ said Dr Kulkarni “was more focused on the curve developing outside the Boston brace, and then between him and The Children’s Hospital they explained that these braces are very limited to what they can do to a curve in the upper region of the spine”.[125] Mr JFXZ said that they would modify the brace even more, which had lifted up her shoulder and caused “even more” problems. He said his daughter had complained of soreness, fatigue and overheating. He asserted that the original Boston Brace probably made JFXZ’s muscles “even weaker”. He also said that “they say” that once a child is removed from such a brace, “they will relapse because their muscles are unable to support their spine”.[126] He said that “apparently” a dynamic brace will help to strengthen the muscle. He accepted that it did not give instant results, but he said it would have a “more long term or a possible more lasting effect”. He said the dynamic brace was “trying to limit” JFXZ’s fatigue as “her muscles were not working hard to create posture” and “the supportiveness of the suit was beneficial”.[127]
[125] Ibid.
[126] Ibid.
[127] Ibid.
Mr JFXZ confirmed at the hearing that he did not return to Dr Kulkarni to discuss the appropriateness of using the SpineCor Brace. He described the consultations with Dr Kulkarni as very limited; that Dr Kulkarni was not concerned about the design or implementation of the brace; and he would pass that onto the Orthotist at The Children’s Hospital at Westmead.[128] Mr JFXZ said he did not think Dr Kulkarni had “any great knowledge of the SpineCor Brace” but he accepted that this doctor “was available to see”.[129]
[128] Ibid at P-17.
[129] Ibid.
The Tribunal notes the statements made by Mrs JFXZ about her daughter’s lived experience, including those set out in paragraph [8] and [9] above.
The Tribunal acknowledges the efforts that have been made by the Parents to seek out what they consider to be the best possible supports for JFXZ in respect of her scoliosis and EDS. It is clear that they consider that a dynamic bracing system for their daughter is the way to go.[130] However, the Tribunal considers it a matter of very significant concern that JFXZ has been fitted with a dynamic spinal brace instead of a rigid-type brace, which has not been prescribed, or at least broadly endorsed as a spinal treatment method, by a suitably qualified medical practitioner. In fact, it is not apparent on the evidence that any medical practitioner had formally prescribed any kind of brace for JFXZ, other than Dr Kulkarni who had originally prescribed a rigid-type Boston Brace for her. Nor had any medical practitioner recently referred JFXZ to a multidisciplinary scoliosis or spinal deformity clinic/unit to have JFXZ fitted with a spinal brace (other than the Boston Brace).
[130] Taking into account the lived experience of JFXZ as required under Rule 3.2(b) of the Support Rules.
The Tribunal acknowledges that JFXZ saw a visiting orthopaedic surgeon from Greece, Dr Kattou who, according to A/P Williams’s Report, recommended a brace for JFXZ. Dr Kattou is involved with SpineCor corporation, and it was noted he visits Australia once every three months. However, there is no evidence before the Tribunal to confirm the basis upon which Dr Kattou saw or treated JFXZ. There are no medical records verifying the specific recommendations made by him.[131] No medical report by him was tendered into evidence in this proceeding.
[131] Dr Kattou is referred to in Dr Zekis’s clinical notes, from Zekis Osteopathic Centre, showing an entry on 14 February 2020 stating “Petros Kattou – Fitting for spine core brace” – refer HTB at page 521. There is also a reference to Mrs JFXZ consulting Mr Kattou, who was described as a visiting orthopaedic surgeon from Greece, who came out every three months – refer HTB at page 492.
Mr Smith confirmed that the fitting of the dynamic brace to JFXZ was not based on a referral by a medical practitioner. Based on Mr Smith’s evidence, it was based upon a referral by Dr Zekis, who is not a medical practitioner. He is an allied health professional (Osteopath) and Mr Smith is aware of this.
The evidence of both JFXZ’s treating Paediatrician, A/P Williams, and independent Orthopaedic Surgeon, Dr Nair, was consistent.[132] The evidence highlighted that a spinal surgeon should be overseeing the treatment of JFXZ’s scoliosis, particularly, given its magnitude and her condition of EDS. They considered that a multidisciplinary team, which would be available in a spinal deformity and/or scoliosis clinic, or a unit at a quaternary hospital, should be managing JFXZ’s spinal conditions. If considered appropriate, the multidisciplinary teams could prescribe a brace for JFXZ, or refer her to be fitted with a brace considered to be appropriate by an Orthotist, if they considered one to be medically appropriate.
[132] Taking into account expert opinion about the use of the Requested Supports as required under Rule 3.3 of the Support Rules.
Mr Smith was asked to express an opinion as to how long it was likely that JFXZ would be using bracing. He said that EDS was a lifelong condition, so JFXZ could be using the brace for quite some time (that is, years or possibly, longer than a decade depending upon physiotherapy for strengthening).[133] Mr Smith considered that the brace would give her support, feedback, and spatial awareness.[134]
[133] Refer Transcript at P-55.
[134] Ibid at P-54.
The Tribunal acknowledges that the literature referred to in paragraphs [47] to [49] above, shows that the fitting of braces is commonly recommended for persons suffering from scoliosis.[135] On the basis of this, it would seem likely that the fitting of a brace to JFXZ would, in principle, not be harmful to her. However, the Tribunal considers that it may be harmful to JFXZ given the critical stage of her development, being 14 years old, if she is not prescribed and fitted with the most appropriate kind of brace given the individual characteristics of the scoliosis and condition of EDS. It is possible that the most appropriate kind of brace for JFXZ is, in fact, the SpineCor brace and DMO suit. Mr Smith seemed to be persuaded as to its benefits, although that carries little weight with the Tribunal given that he is an allied health professional and not a spinal surgeon, spinal deformity specialist, neurosurgeon, or orthopaedic surgeon. He is not a qualified medical specialist of any type. Mr Smith, himself, accepted when he gave evidence at the hearing that the use of a brace should be recommended by a medical practitioner. The Tribunal does not understand why then, if this was his opinion, Mr Smith accepted the referral from Dr Zekis and decided upon and fitted a brace to JFXZ without any consultation being made with JFXZ’s treating paediatrician since birth until the present, or with her treating spinal surgeon, Dr Kulkarni (or some other spinal surgeon or spinal deformity medical specialist).
[135] Taking into account the matters referred to in Rule 3.2(a) of the Support Rules.
The Tribunal is not satisfied on the balance of the evidence before it, that the use of a SpineCor brace or the DMO suit would be beneficial and effective for JFXZ. This is because there was no written confirmation (or medical evidence) that a medical practitioner had recommended that JFXZ use a dynamic brace that had been accepted into evidence and tested at the final hearing of this matter. Nor was there any formal referral by a medical practitioner to an Orthotist/Osteopath requesting that JFXZ be fitted with a brace. If JFXZ or her Parents have new evidence that they wish to introduce in support of seeking funding for the Requested Supports, such as Dr Gray’s recent letter, or any further detailed supplementary report that Dr Gray may be asked to prepare, JFXZ and her Parents are at liberty to make a fresh request for the Requested Supports as part of their next NDIA plan reassessment process with the NDIA in relation to JFXZ’s NDIS plan.
However, based on the evidence before the Tribunal in this proceeding, it cannot be satisfied at the present time that the use of a SpineCor brace or DMO suit represents value for money when compared to other alternative supports, because the Tribunal would first need to be satisfied that it is beneficial, and if so, in what way, in order to commence any assessment of whether it represents value for money. The Tribunal cannot be certain about the benefits to be achieved by the Requested Supports if used by JFXZ for the reasons set out in paragraphs [101] and [104] above; and specifically, in the absence of evidence from a suitably qualified medical practitioner endorsing that it is medically appropriate for JFXZ to be using a dynamic spinal brace as opposed to a rigid-type brace. For this reason, the Tribunal cannot undertake the consideration, as required to do, of the matters referred to in s 34(1)(c) of the NDIS Act, and under Rule 3.1 of the Support Rules.
For these reasons, the Tribunal concludes that these supports do not meet at least two of the six mandatory criteria under s 34(1) of the NDIS Act, being the criteria in sub-paragraphs (c) and (d). Given this conclusion, it was not necessary for the Tribunal to proceed to a detailed consideration of whether the Requested Supports also met the mandatory criterion under s 34(1)(f) of the NDIS Act (raised as in issue in this proceeding), or any of the other remaining criteria in s 34(1).
CONCLUSION
The Tribunal concludes that the Requested Supports do not meet all of the six mandatory “reasonable and necessary supports” criteria under s 34(1) of the NDIS Act and should not be included in JFXZ’s statement of participant supports and funded under the NDIS. On this basis, the Tribunal affirms the Decision under Review.
I certify that the preceding 107 (one hundred and seven) paragraphs are a true copy of the reasons for the decision herein of Senior Member K. Parker
..............................[SGD]..........................................
Associate
Dated: 3 October 2022
Date(s) of hearing: 13 and 14 December 2022 Date final submissions received: 26 April 2022 Applicant: In person Advocate for the Applicant: Mr & Mrs JFXZ (the Parents) Respondent: In person Counsel for the Respondent: Mr Phil Nolan of counsel Solicitors for the Respondent: Australian Government Solicitor
Key Legal Topics
Areas of Law
-
Administrative Law
-
Statutory Interpretation
Legal Concepts
-
Judicial Review
-
Procedural Fairness
-
Statutory Construction
-
Expert Evidence
-
Appeal
-
Standing
0
1
0