Klewer and National Disability Insurance Agency - [2022] AATA 566

Klewer and National Disability Insurance Agency [2022] AATA 566 (30 March 2022)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2018/4118
Re:Robert Klewer
APPLICANT

AndNational Disability Insurance Agency
RESPONDENT

DECISION
Tribunal:Deputy President F Meagher
Date:30 March 2022
Place:Brisbane

The Tribunal affirms the decision under review pursuant to paragraph 43(1)(a) of the Administrative Appeals Tribunal Act 1975 (Cth).
...................................[SGD].....................................
Deputy President F Meagher
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – review of supports in plan – whether provision of overnight care for 10 hours per night, seven days per week is reasonable and necessary pursuant to section 34 of the National Disability Insurance Scheme Act 2013 (Cth) – if so, whether the Respondent should fund the Applicant’s mother to provide such support – decision under review affirmed.
Legislation
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
Cases
National Disability Insurance Agency v WRMF [2020] FCAFC 79
Secondary Materials
‘Including Specific Types of Supports in Plans’, National Disability Insurance Agency (Web Page, 30 March 2022) < FOR DECISION
Deputy President F Meagher
INTRODUCTION

Mr Robert Klewer has requested overnight care for 10 hours per night, seven days per week to be provided by his mother Ms Klewer. This matter concerns whether that is a reasonable and necessary support to be funded under the National Disability Insurance Scheme (the NDIS).
By way of background Mr Klewer is 34 years old and lives with Ms Klewer. He works at a nursery owned by her. He first had surgery at age four (4) for a left hemisphere astrocytoma with subsequent surgeries and treatment in Australia, Germany, and the United States.
After the surgery referred to above Mr Klewer developed epilepsy, which was controlled with anti-convulsant medication. From 1995 Mr Klewer remained seizure free despite being unmedicated, until 2006 when he had an accident on his bicycle, after which his epilepsy recurred. He historically and currently receives significant care from Ms Klewer, including that she monitors him overnight. He continues to experience seizures.
Mr Klewer became a participant in the NDIS in March 2018. Ms Klewer became his nominee for the purposes of the NDIS on 10 August 2018.
A Statement of Participant Supports (SOPS) in respect of Mr Klewer, which commenced on 31 May 2018, was approved by a letter dated 1 June 2018 from the National Disability Insurance Agency (the Respondent).
Prior to the approval of the SOPS and for some time thereafter Ms Klewer corresponded, including by email, with the Respondent requesting, inter alia, that she be ‘allow[ed] to continue to provide support as a service provider, and to be funded by NDIA.’[1]
[1] Exhibit 2, A22, A23 and A26.
The SOPS which commenced on 31 May 2018 did not provide funding for Ms Klewer to provide overnight support to the Applicant. This led to the decision under review which is a decision of a delegate of the CEO of the Respondent made on 23 July 2018 pursuant to subsection 100(3) of the National Disability Insurance Scheme Act 2013 (Cth) (the NDIS Act), which confirmed a reviewable decision made on 1 June 2018 to approve a SOPS in Mr Klewer’s plan, on the basis that certain supports requested by him were not reasonable and necessary supports pursuant to subsection 34(1) of the NDIS Act.
Of significance to the Tribunal, the SOPS which is the subject of this review did not provide funding for Ms Klewer to provide support to Mr Klewer.[2]
[2] Ibid, A28.
On 23 July 2018 Mr Klewer made an application, pursuant to section 103 of the NDIS Act, to the Tribunal for review of that decision which relevantly stated:[3]
The decision to refuse NDIS payment for certain services by way of Family Support, dlivered [sic] by my nominee [Ms Klewer] was wrong as there was sufficient evidence toward the required criteria regarding the Exceptional Circumstances case and further evidence was ignored and requests to acknowledge such further evidence were also not responded to.
[3] Exhibit 1, T1.
When the application for review was lodged with the Tribunal there was another support in issue which was resolved before the hearing.
On 15 February 2019, specific to this review, Mr Klewer crystallised the level of funding being sought with respect to overnight care from his mother, by an email from Ms Klewer to the Tribunal which stated the level of support sought as being 10 hours per night (8PM – 6AM) seven days per week for a two-year period that would be subject to further review at the end of such period.[4]
[4] Exhibit 2, A58.
Since the application for review, there have been a number of further decisions made by the Respondent pursuant to section 42D of the Administrative Appeals Tribunal Act 1975 (Cth) (the AAT Act) to ensure the continuity of funding for Mr Klewer of the reasonable and necessary supports not in contention while the proceedings before the Tribunal are on foot.
THE NATIONAL DISABILITY INSURANCE SCHEME
The NDIS is governed by the NDIS Act. Its objects are set out in section 3 of the NDIS Act. They should be used to assist in the construction of the NDIS Act, unless contrary to clear words elsewhere in the Act, notwithstanding they ‘may pull in different directions’ or be ‘aspirational’.[5] General principles guiding actions to be taken under the NDIS Act are set out in section 4. Such actions include ‘determining whether a statement of participant supports should be approved’.[6]
[5] National Disability Insurance Agency v WRMF [2020] FCAFC 79, [145] – [146].
[6] Pursuant to subsection 33(2) of the NDIS Act.
Participant Plans are covered in Chapter 3 Part 2 of the NDIS Act. Section 31 of the NDIS Act deals with the preparation, review, and replacement of a participant’s plan. Section 33 of the NDIS Act deals with matters which must be contained within a participant’s plan, including a statement of goals, objectives and aspirations and the participant’s environmental and living context, which must be prepared by the participant, and a SOPS prepared with the participant and approved by the CEO.
Subsection 33(5) of the NDIS Act states that the matters to which the CEO must have regard in deciding whether or not to approve the SOPS, including the participant’s statement of goals and aspirations and relevant assessments conducted in relation to the participant. The CEO must also be satisfied as mentioned in section 34 of the NDIS Act in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided, and must apply the relevant rules.
Subsection 34(1) of the NDIS Act contains criteria in respect of which a decision maker must be satisfied. All the criteria must be met. The phrase ‘reasonable and necessary’ is not defined in the legislation. It is a composite phrase and should be considered as such.
Further guidance with respect to the funding or provision of reasonable and necessary supports is found in the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (the Rules) which are made pursuant to subsection 35(1) of the NDIS Act.
Section 99 of the NDIS Act contains a table enumerating reviewable decisions under the NDIS Act. They include ‘[A] decision under subsection 33(2) to approve the statement of participant supports in the plan’.[7]
[7] NDIS Act, s 99, item 4.
Section 100 of the NDIS Act provides for review of reviewable decisions by the NDIA, by a different decision maker from the maker of the original decision. Pursuant to section 103 of the NDIS Act, an application may be made to the Tribunal in respect of any decision reviewed under section 100 of the NDIS Act.
Accordingly, by virtue of the application of section 103 of the NDIS Act, the Tribunal has jurisdiction to review this application.
There are also Operational Guidelines which constitute government policy, and should be considered if not inconsistent with the provisions or objects of the legislation.
HEARING
A hearing occurred in relation to this matter on 17,18 and 19 November 2021 by Microsoft Teams. The mode of hearing was ultimately determined by the Global Pandemic and the need to balance the Tribunal’s objective’s as set out in section 2A of the AAT Act. However, prior to it becoming clear that that was to be the mode of hearing, Ms Klewer was adamant that the hearing should be way of telephone, although ultimately, she agreed to the use of Microsoft Teams technology, with the expert witnesses giving evidence by telephone, in accordance with the Tribunal’s COVID-19 Special Measures Practice Direction - National Disability Insurance Scheme Division. The Tribunal is satisfied that the parties were given an adequate opportunity to present their cases notwithstanding some technical difficulties and the occasional comments of Ms Klewer that it was difficult when one could not see the witnesses.[8]
[8] Transcript P-49, lines 13 -14; P-69, line 18.
There was significant documentary evidence before the Tribunal as set out in the attached Exhibit Register and relevantly referred to in within these reasons.
Mr Klewer did not give oral evidence before the Tribunal. The Respondent noted that it did not ask the Tribunal to draw any adverse inference in that regard,[9] and the Tribunal has not.
[9] Transcript, P-72, lines 42 – 45.
Ms Klewer, who is Mr Klewer’s nominee pursuant to section 86 of the NDIS Act, represented him and gave oral evidence.
The Respondent was represented by Mr Liu of Counsel.
In addition to the documents before the Tribunal, referred to as relevant below, there was oral evidence on Mr Klewer’s behalf from Ms Jane Burford, and Mr Charles Lucas, and, on behalf of the respondent, from Dr Peter Ashkar.
CONSIDERATION
Issues
The primary issues in this matter are whether overnight care for 10 hours per night 7 days per week is a reasonable and necessary support for Mr Klewer, and, if so, whether Ms Klewer should be funded to provide that support. Further to this the Tribunal notes that in her closing submissions Ms Klewer suggested that it was also open to the Tribunal to find that a lesser amount of care be funded – for example eight hours per night for five nights per week.[10]
[10] Transcript, P-129, lines 1 – 3.
Contentions
Mr Klewer’s case is that his seizures are frequent and serious, possibly leading to serious injury, and that he therefore needs overnight monitoring and medication, and that the only person to provide that care is Ms Klewer.[11] The relevant contentions and submissions made on behalf of Mr Klewer with respect to the evidence before the Tribunal are referred to throughout these reasons. Ms Klewer is adamant that Mr Klewer experiences tonic-clonic seizures, but asserts that even if the seizures are psychogenic, that they can nonetheless cause serious injury. Further she contends that stress makes Mr Klewer’s seizures worse and that he has anxiety.[12] She emphasises that the stress must therefore be alleviated by her caring for Mr Klewer overnight.[13]
[11] Applicant’s Statement of Facts, Issues and Contentions, [5].
[12] Ibid, [8].
[13] Ibid.
Mr Klewer also contends that the only person who can provide his crucial overnight care is Ms Klewer due to the existence of ‘exceptional circumstances’[14] making it appropriate that a family member be paid to fund Mr Klewer’s overnight care.[15]
[14] As outlined in clause 11.1 of the ‘Including Specific Types of Supports in Plans Operational Guidelines’, National Disability Insurance Agency (Web Page, 30 March 2022)
[15] See example Exhibit 2, A67, [9] – [10].
The Respondent’s case is that the Tribunal cannot be positively satisfied[16] that the requested support of overnight care is reasonable and necessary for the purposes of the criteria in subsection 34(1) of the NDIS Act.[17] The Respondent broadly approached its case by contending that the Tribunal could not be satisfied that overnight care is reasonable and necessary, based on the lack of evidence regarding the nature and frequency of Mr Klewer’s seizures,[18] and that in any case, the exceptional circumstances referred to in the ‘Including Specific Types of Supports in Plans’ Operational Guidelines[19] (the Operational Guidelines), which would usually exist to warrant a family member providing paid supports, were not made out in this matter.[20]
[16] Citing National Disability Insurance Agency v WRMF [2020] FCAFC 79, [201].
[17] Transcript, P-122, lines 32 – 33.
[18] Respondent’s Statement of Facts, Issues and Contentions, [46].
[19] ‘Including Specific Types of Supports in Plans Operational Guidelines’, National Disability Insurance Agency (Web Page, 30 March 2022)
[20] Respondent’s Statement of Facts, Issues and Contentions, [84].
In its updated Statement of Facts, Issues and Contentions dated 9 September 2021 (the Respondent’s SFIC), the Respondent contended that there is no objective evidence as to the frequency of Mr Klewer’s seizures, and that the weight of evidence is that Mr Klewer is experiencing Psychogenic Non-epileptic Seizures (PNES) as opposed to tonic-clonic seizures.[21] In its submissions at hearing, the Respondent submitted that there is no evidence of serious seizure activity since May 2021 when changes to Mr Klewer’s medication became effective.[22] The Respondent also contended that: ‘Psychogenic seizures do not pose the same risks as epileptic seizures. They do not result in serious injury although they can result in bumps and bruises’.[23]
[21] Ibid, [64].
[22] Transcript, P-124, lines 43 – 46.
[23] Respondent’s SFIC, [53], citing Exhibit 2, A91.
The Respondent contended in its SFIC that there is no objective evidence that Mr Klewer cannot be cared for by an external support worker,[24] and that there are appropriately qualified service providers available in the Mr Klewer’s area.[25] The Respondent also contended that Mr Klewer’s concerns regarding privacy, and fear of someone watching him sleep, can be addressed using passive monitoring, such as a seizure watch,[26] and that there is no medical evidence that Mr Klewer’s stress is causing seizures.[27] Rather, on the available evidence it is not clear what is causing Mr Klewer’s seizures.[28] The Respondent also contends that it is not clear whether it is Ms Klewer’s cultural background which supports that she is the only person appropriate to care for Mr Klewer, or whether it is her personal strongly held views.[29]
[24] Ibid, [91(a)].
[25] Ibid, [91(b)].
[26] Ibid, [91(c)].
[27] Ibid, [91(d)].
[28] Ibid.
[29] Respondent’s SFIC, [91(e)].
Preliminary issues
Ms Klewer proceeded on the basis that the Operational Guidelines stood alone.[30] She contended that the application for her to be funded to provide overnight care for Mr Klewer was made at the suggestion of a staff member of the Respondent who referred her to clause 11.1 of the Operational Guidelines.[31] She contended that ‘at no time was it suggested that 11.1 as it stands alone cannot be appealable as it stands alone.’[32] That said, Ms Klewer also submitted that subsection 34(1) of the NDIS Act was met and it was on that basis that the Operational Guidelines applied.[33]
[30] Transcript, P-128, lines 39 – 40.
[31] See example Exhibit 2, A22.
[32] Transcript, P-128, lines 39 – 41.
[33] Transcript, P-128, lines 39 – 45.
Clause 11.1 of the Operational Guidelines states:
Funding a family member to provide supports to a participant can be detrimental to family relationships.
For example, the consequences of funding a family member to provide supports may include unintentionally creating an environment where a participant’s wishes in relation to their care arrangements or the delivery of their supports is diminished, or there is no or limited respite for the family worker taking on the role of support worker.
Generally, the NDIA will only fund family members to provide supports in exceptional circumstances. For example, when:
·there is a risk of harm or neglect to the participant;
·there are religious or cultural reasons for funding a family member to provide supports;
·or the participant has strong personal views, for example in relation to their privacy or dignity.
The NDIA will consider the circumstances of each case, any wishes expressed by the participant and also take into account what is reasonable to expect others to provide.
The NDIA will not fund a family member to provide personal care or community access supports unless all other options to identify a suitable provider of supports have been exhausted.
Note, if the funding for supports under a participant’s plan is managed by the NDIA, family members will only be able to be funded to provide supports if they are a registered provider of supports (see Registered Providers).
The Respondent submitted that the Operational Guidelines do not operate independently of subsections 33(2) or 34(1) of the NDIS Act.[34] It is only if the decision maker is satisfied that the criteria in subsection 34(1) of the NDIS Act are met that it becomes necessary to consider the Operational Guidelines.[35]
[34] Transcript, P-118, lines 40 – 42.
[35] Respondent’s SFIC, [80].
I agree with the Respondent’s submission on this point. The Operational Guidelines are framed in such a way as to make it clear that the need for support must be established before considering whether exceptional circumstances such as those included in the Operational Guidelines arise.
Further, the Tribunal notes the Respondent’s position is not that Ms Klewer should be prevented from providing overnight care for Mr Klewer.[36] Rather, it submitted that the Respondent should not fund such care taking into account the considerations in subsection 33(5) of the NDIS Act and the reasonable and necessary criteria in subsection 34(1) of the NDIS Act.
[36] Transcript, P-119, lines 9 -11.
EVIDENCE AND FINDINGS
The oral evidence in this matter was lengthy, repetitive and discursive. There was also substantial documentary evidence as referred to below. Ms Klewer was very adamant that the evidence made out the facts and contentions upon which Mr Klewer relies. Mindful of the remarks of the Full Court in National Disability Insurance Agency v WRMF [2020] FCAFC 79 (WRMF) (set out below) the Tribunal has extensively set out the relevant evidence in order to ensure that nothing was overlooked:[37]
152.Ultimately, as the Full Court in McGarrigle recognised, the statutory task of determining the contents of a participant's plan, and what are the reasonable and necessary supports, is a fact‑intensive exercise. More so than in many legislative schemes that confer an administrative benefit, the circumstances of each participant will vary greatly. The exercise is highly individualised. There will be an area of 'decisional freedom' (Minister for Immigration and Citizenship v Li at [28] (French CJ)) for the decision‑maker, about what supports fall within this description, given the circumstances of a particular individual. Provided no substantive legal error attends the choices made, it is possible for reasonable minds exercising the power under s 33(2) to differ. So too on merits review.
[37] WRMF, [152].
I make the following observations regarding the evidence of Ms Klewer and the manner in which the matter was conducted. Ms Klewer was disingenuous regarding the information she had with respect to a seizure watch. Even making allowance for the fact that Ms Klewer was a lay representative for Mr Klewer, Ms Klewer put words in their mouths and led them, even when asked not to by the Tribunal. She asserted for example that Ms Burford, Epilepsy Nurse Specialist, had spoken to one of the neurologists who had seen Mr Klewer, but this was categorically denied by Ms Burford.[38] Ms Klewer’s own evidence was diffuse – she often digressed, and when questioned, failed to answer questions directly, changed the subject and obfuscated. Ms Klewer also overstated the extent of evidence – for example with respect to the number and type of seizures Mr Klewer experienced on a specific occasion.[39]
[38] Transcript, P-65, lines 13 – 15.
[39] Transcript, P-96 – P-98.
Evidence of Mr Klewer

Mr Klewer provided a statement of lived experience dated 9 May 2019.[40]
[40] Exhibit 2, A69.
Clause 11.1 of the Operational Guidelines is relied upon by Mr Klewer in seeking Ms Klewer be paid to provide overnight care. His contentions are that, if she does not provide such care for him, the need for which both Mr Klewer and Ms Klewer take as a given, there is a risk of harm or neglect to him.[41] He also contends that that there are cultural reasons supporting that Ms Klewer should provide the care, and similarly that his strong personal views are that she should do so, in order to protect his privacy and dignity.[42]
[41] Transcript, P-115, lines 30 – 32.
[42] Transcript, P-115, lines 38 – 42.
Mr Klewer’s statement dated 9 May 2019 states that he wished only for Ms Klewer to care for him. Mr Klewer said that he has ‘almost always suffered when… in hospital care’,[43] and that he suffers from extreme anxiety and stress which Ms Klewer tries to alleviate.[44] Mr Klewer states that, other than if he finds a partner in the future who can be trained by Ms Klewer, he fears anyone other than Ms Klewer watching over him while he sleeps.[45] He considers that there is significant risk to himself if Ms Klewer is not present at night and that he is entitled to have his ‘wishes and decisions respected by the NDIS’, as that is one of the premises upon which the scheme is founded.[46] Mr Klewer’s strong views in that regard were also referred to in the evidence of Mr Lucas, Ms Burford, Dr Choi, Dr Wong and Dr Ashkar.
[43] Exhibit 2, A69, 1(c).
[44] Ibid, [1(f)].
[45] Ibid, [1(b)].
[46] Ibid, [3].
Mr Klewer, in his statement, described the situation at night as follows:[47]
I am terrified about my condition and I worry a lot each time I go to bed at night as I don't know if I am going to suffer seizure. I am aware most times when these episodes occur and they are very scary. My heart rate is so fast and my jaw starts shaking then my whole body starts shaking and I try to talk and I can't. I tap my leg real hard to get mum's attention, she sleeps across the room, I feel like I am going to die.
My head twists one way and then I start falling toward the left and to the ground, [Ms Klewer] stops me from falling but at times she can't so she lets me fall on the pillows on the floor she places there. At times [Ms Klewer] injects me with medication if I have more seizures or if the seizure is too long. Such medication always stops the seizures.
[47] Ibid, [2(g) – (h)].
Mr Klewer outlined the exceptional circumstances he claimed to exist in a letter to the Respondent dated 27 April 2018 which was relevantly summarised within the Respondent’s SFIC as follows:[48]
[48] Respondent’s SFIC, [88].
88.Ms Klewer puts the “exceptional circumstances” upon which [Mr Klewer] relies in various ways:
iv.Letter to the NDIA dated 27 April 2018 (T7B; A22, 38-44)
i.Mr Klewer feels he will be at risk of harm or neglect if left with other people;
ii.Both Mr and Mrs Klewer have strong personal views that [Mr Klewer’s] privacy and dignity should be preserved;
iii.Mr Klewer is highly vulnerable;
iv.Mr Klewer only has trust in Mrs Klewer;
v.Any added stress can result in a deterioration of his epilepsy (ie he will suffer even more seizure episodes).
…
iv.[Mr Klewer’s] compilation of previous submissions dated 31 October 2019
i.[Mr Klewer’s] need for privacy and dignity;
ii.[Mr Klewer] has always received the best care from [Ms Klewer]. This is the best and safest option as safety is paramount;
iii.[Mr Klewer’s] mother is of Maltese background. Maltese people tend to always look after their loved ones and not put them into care;
iv.The risk of harm to [Mr Klewer] “by alternative night care” is high.
[Footnotes omitted]
Evidence of Ms Klewer
Ms Klewer provided two statements of lived experience, one dated 17 October 2018[49] and the other dated 8 May 2019.[50]
[49] Exhibit 2, A45.
[50] Ibid, A69.
Ms Klewer was adamant that Mr Klewer experiences frequent, serious, and particularly life-threatening seizures at night. She said that she and Mr Klewer are extremely close.[51] He was diagnosed with a left hemisphere astrocytoma when he was four years old, and she sought and obtained lifesaving surgery and treatment overseas after unsuccessful and traumatic surgery in Australia.[52] The surgery and treatment obtained overseas was generally successful however Mr Klewer experiences eyesight and mobility issues as a result of the surgery.[53]
[51] Ibid, A45, [3].
[52] Ibid.
[53] Exhibit 2, A45, [2]; Transcript, P-19, line 21.
Ms Klewer gave a history of Mr Klewer’s seizures, saying that in 2006 he had an accident while riding his bicycle, after which he was diagnosed with epilepsy.[54] His epilepsy was controlled until 2016, when it resumed in the form of ‘status epilepticus’ which had to be stopped by the injection of Midazolam administered by attending paramedics.[55]
[54] Exhibit 2, A45, [4].
[55] Ibid.
She said that between March 2017 and 8 May 2019 Mr Klewer experienced ‘over 70 serious seizure episodes, all at night apart from about six minor episodes, either on waking in the AM or soon after going to bed at night’.[56]
[56] Ibid, A67.
According to Ms Klewer, Mr Klewer experienced another ‘status epilepticus’ on 10 December 2018, having been stressed during an assessment by the Respondent’s expert Dr Peter Ashkar.[57] The seizure episodes experienced by Mr Klewer include ‘Grand Mal’ seizures, and they are frequent and unpredictable, meaning they can occur at any time during the night.[58]
[57] Ibid.
[58] Applicant’s Statement of Facts Issues and Contentions, [5].
Ms Klewer emphasised that epilepsy is an extremely serious, unpredictable and incurable condition, which can result in Sudden Unexplained Death in Epilepsy (SUDEP).[59] She said that even pseudo seizures, if that is what Mr Klewer experiences, can result in serious injury.[60] She said that as a result of his seizures Mr Klewer has ended up with carpet burns and a neck injury necessitating a neck brace as evidenced by the photograph tendered in evidence.[61] In his Statement of Facts, Issues and Contentions (the Applicant’s SFIC), Mr Klewer contends that this photograph is supporting evidence regarding the risks of harm during typical night seizure episodes, and shows him in the Emergency Department with a neck brace after having been thrown head first off his bed during an episode. Ms Klewer submitted that the photograph was taken on the day Mr Klewer was in hospital,[62] and that the hospital records state that Mr Klewer fell out of bed during a seizure and injured his neck as a result.[63] She stated that the records indicate he needed an x-ray and was enduring pain.[64] The Tribunal observes that the relevant ‘ED General Notes’ include that ‘[Ms Klewer] says [Mr Klewer] somersaulted forward and landed on head during seizure…’ [65] They note that Mr Klewer reported some neck pain and further record that Mr Klewer ‘repeatedly moved from the bed and removed collar overnight despite being stressed upon the risks of this’[66] and the X-ray taken at that time indicated ‘no acute vertebral fracture or vertebral subluxation identified’.
[59] Transcript, P-107, lines 35 – 36.
[60] Transcript, P-116, lines 43 – 46.
[61] Exhibit 2, A88.
[62] Transcript, P-109, lines 1 – 5.
[63] Transcript, P-109, lines 20 – 23.
[64] Transcript, P-109, lines 21 – 23.
[65] Exhibit 2, B2, 665.
[66] Ibid, 641.
Reports of neurologists relied upon by Mr Klewer
The Applicant’s SFIC references the following eight reports from various neurologists, namely:[67]
·Professor Somerville, Neurologist, dated 16 June 2015[68] and 7 September 2015,[69]
·Dr Spira, Consultant Neurologist, dated 12 October 2017,[70]
·Dr Taneya, Consultant Neurologist, dated 28 November 2017[71] and 18 April 2018,[72]
·Dr Loiselle, Neurologist, dated 19 September 2018[73] and 17 January 2019,[74] and
·Dr Kalband, Neurologist, dated 24 November 2020.[75]
[67] Applicant’s SFIC, [8].
[68] Exhibit 2, A6.
[69] Ibid, A8.
[70] Ibid, A15.
[71] Ibid, A16.
[72] Ibid, A21.
[73] Ibid, A41.
[74] Ibid, A54.
[75] Ibid, A100.
There was also a Discharge Report[76] and a report regarding Video – EEG Telemetry[77] prepared by Professor Somerville available to the Tribunal.
[76] Ibid, A73.
[77] Ibid, A72.
The Applicant’s SFIC states in respect of each of the neurologists’ reports that ‘these expert letters and reports confirm the Epilepsy/Seizure episode condition which mainly commenced in 2006 until current’.[78]
[78] Applicant’s SFIC, [8].
The historical diagnosis of epilepsy was confirmed by Professor Somerville, who also confirmed that in certain circumstances stress could provoke seizures.[79] The other neurologists accepted that Mr Klewer had epilepsy resulting from surgery for the tumour as a child, and further epileptic seizure activity caused by an accident in 2006. However, it was generally accepted that the seizures were well-controlled until 2015.
[79] Exhibit 2, A6.
The reports indicate that Mr Klewer was involved in an altercation with the police in January 2015, and according to Dr Spira ‘[I]t does not appear that there are any immediate sequalae to that incident but I was informed that in August, September and October of that year [Mr Klewer] suffered a string of seizures which [Ms Klewer] outlined was of the order of 6 attacks’.[80] While Ms Klewer described Mr Klewer as experiencing tonic-clonic seizures at that time, Mr Klewer himself told Dr Spira that he was awake during the episodes which Dr Spira considered ‘very difficult to reconcile with tonic-clonic convulsions’.[81] Dr Spira noted that Mr Klewer attributed the seizures to stress and observed that when he sought further detail as to what Mr Klewer was referring to in that regard, Mr Klewer responded that ‘[Ms Klewer] pisses me off at times’.[82] Ultimately Dr Spira concluded that he would ‘never associate’ Mr Klewer’s consciousness during the seizures with tonic-clonic seizures and ‘that there appears to be very powerful psychological triggers to the attacks’, that he ‘wonders whether some of the episodes may be psychogenic rather than representing epilepsy’, and that it is important to resolve the nature of the seizures by administering EEG telemetry.[83]
[80] Ibid, A15.
[81] Ibid.
[82] Ibid.
[83] Ibid.
Similarly, Dr Taneja, who saw Mr Klewer on 27 November 2017, about seven weeks after the review by Dr Spira, thought that it was a very strong possibility that Mr Klewer was experiencing complex partial seizures, however he recommended a video EEG ‘to pinpoint diagnosis’.[84] He opined that based on the description provided by Mr Klewer and Ms Klewer he was unsure whether Mr Klewer was ‘actually having a seizure or a pseudo-seizure’.[85]
[84] Exhibit 2, A16.
[85] Ibid.
Following these reports, it appears that an EEG was administered between 12 and 14 March 2018.[86] The time required to complete the test was seven days but Mr Klewer discharged himself after two days and refused to cease anticonvulsant medication prior to the test, in accordance with testing requirements.[87] No seizure activity was recorded during Mr Klewer’s period of observation and the hospital discharge report states ‘[A]s this VEEG did not capture any events it does not change the prior to admission diagnosis of:
·Epilepsy;
·Non-epileptic events’.[88]
[86] Ibid, A72.
[87] Transcript, P-108, lines 3 – 5.
[88] Exhibit 2, A73.
Dr Taneja wrote a further report further report on 18 April 2018 confirming the outcome of the EEG and concluding that ‘…we have never really proven that these are seizures’.[89]
[89] Ibid, A21.
Dr Loiselle’s conclusion regarding the nature of Mr Klewer’s episodes, as contained in his report dated 19 September 2018, was that the historical epilepsy was controlled with medication, and that the ‘more recent events are probably panic attacks’.[90] He could not exclude epileptic seizures but considered Mr Klewer staying awake during them as very rare.[91] On subsequent review of Mr Klewer on 17 January 2019, Dr Loiselle concluded that he suspected Mr Klewer has a ‘combination of ongoing organic and non-organic events’ and ‘ongoing significant anxiety’.[92]
[90] Ibid, A41.
[91] Ibid, A41.
[92] Ibid, A54.
Dr Kalband, who conducted the most recent neurology review of Mr Klewer on 4 November 2020, considers that Mr Klewer’s ‘ailment’ ‘…is suggestive of focal dyscognitive seizures with secondary generalisation.'[93] Dr Kalband further opined that ‘there was a possibility raised of there being nonepileptic events as well which cannot be entirely ruled out at this stage’.[94] Dr Kalband noted that Mr Klewer’s seizures occurred once a month or once in 4 - 5 weeks.[95] Ms Klewer submits, in relation to Dr Kalband, that he was satisfied that Mr Klewer was experiencing tonic-clonic type seizures.[96]
[93] Exhibit, A102.
[94] Ibid.
[95] Ibid.
[96] Transcript, P-111, lines 6 – 8.
Evidence regarding the medication prescribed for, and the way in which it was taken by Mr Klewer, did not assist the Tribunal in understanding the nature and frequency of his seizure activity. Professor Somerville suggested increasing Keppra in September 2015.[97] Dr Spira recommended, after Mr Klewer experienced a ‘status epilepticus’ event in March 2020, that the Keppra dose be increased, which advice he noted was ‘countermanded’ by Ms Klewer.[98] Dr Spira also recalled that Ms Klewer ‘tended to block the use of medications’.[99] Dr Loiselle expressed concerns regarding the use of medicinal marijuana, apparently favoured by Ms Klewer.[100] He considered that medicinal marijuana had only proved beneficial for one type of epilepsy (by inference, not applicable to Mr Klewer), and could not be recommended for other types thus it would have no impact on ‘[Mr Klewer’s] behavioural events’, and furthermore that it could be a very inappropriate treatment for his anxiety.[101] In his later report, Dr Loiselle observed that Mr Klewer is not looking to change his medication and is ‘relatively comfortable with his seizure frequency and anxiety’,[102] yet Ms Klewer ‘continues to believe medicinal marijuana is the answer or should at least be tried and doesn’t seem to countenance trying anything alternative’.[103] Dr Kalband recommended medication changes in November 2020 and observed that Lamotrigine had been administered for the preceding 12 years at a ‘dismally sub therapeutic dose’ and that ‘[A]t some point [Ms Klewer] had tried to cease the dose of Lamotrigine herself and at that time [Mr Klewer] had an increase in the number of seizures following which she reinstated the dose to the current dose’.[104] Dr Kalband also cautioned Ms Klewer with respect to the use of Midazolam and its possible ‘respiratory adverse effects’,[105] and Dr Loiselle suggested its use be minimised.[106] With respect to the evidence of the neurologists, Ms Klewer submitted that there are ‘varying opinions’ regarding Dr Spira’s views that tonic-clonic seizures would be very unlikely to occur whilst conscious and accordingly the episodes may be pseudo or psychogenic episodes.[107] Ms Klewer stated that Mr Klewer had been placed on Effexor to address pseudo-seizures, but it had been discontinued, seemingly implying that therefore pseudo-seizures have been excluded.[108]
[97] Exhibit 2, A8.
[98] Ibid, A15.
[99] Ibid.
[100] Ibid, A41 and A54.
[101] Ibid, A41.
[102] Ibid, A54.
[103] Ibid, A54.
[104] Exhibit 2, A101.
[105] Ibid.
[106] Ibid, A41.
[107] Transcript, P-107, lines 30 – 33.
[108] Transcript, P-107, lines 41 – 43.
Ms Klewer agreed that there was nothing conclusive in the EEG testing.[109] She justified the cessation of the EEG telemetry on the basis that the seizures occur anywhere between two to four times per month and that Mr Klewer had been unwilling to cease his anticonvulsant medication as the test required[110] and thus seizure activity was unlikely to be captured, particularly in a seven-day period.[111] Ms Klewer considered, with respect to the EEG, that Mr Klewer had complied enough,[112] thus justifying Mr Klewer discharging himself from hospital two days into the necessary seven day testing period. Ms Klewer stated that Mr Klewer had undertaken alternative testing administered by SEER Medical, which necessitated him going to and from Byron Bay, and being ‘hooked up’ to all these electrodes’.[113]
[109] Transcript, P-109, lines 16 – 17.
[110] Transcript, P-108, lines 3 – 4.
[111] Transcript, P-108, lines 7 – 12.
[112] Transcript, P-51, lines 19 – 20.
[113] Transcript, P-47, lines 1 – 5.
Ms Klewer also maintained that Dr Kalband was satisfied that Mr Klewer was experiencing tonic-clonic type seizures rather than pseudo-seizures.[114]
[114] Transcript, P-111, lines 6 – 8.
In response to questions from the Tribunal it emerged that there is no scheduled or regular review of Mr Klewer by a neurologist.[115] Ms Klewer said that if Mr Klewer needed an appointment with a neurologist, he would see one who visited Coffs Harbour.[116]
[115] Transcript, P-43, lines 27 – 33.
[116] Transcript, P-43, lines 38 – 40.
Ms Klewer has kept a diary from 26 August 2018 to the date of the hearing recording her observations of Mr Klewer’s seizure activity.[117] It was provided in two parts – the first part was provided prior to hearing, and a second part, for the period 8 July 2019 and 3 May 2021, was tendered at hearing. Ms Klewer asserts that the diary is evidence of the number of seizures Mr Klewer experiences, although she acknowledged in cross examination that his seizures had improved since May 2021.[118]
[117] Exhibit 2, A82, and Exhibit 4.
[118] Transcript, P-24, lines 19 – 20.
As well Ms Klewer referred to the very substantial bundle of hospital and ambulance records before the Tribunal as evidence of Mr Klewer’s significant seizure activity[119] – contending that they represent ‘proof of condition’[120] and record episodes of seizure activity in the presence of paramedics or in the Emergency Department.[121] Of those, an Emergency Nursing Assessment of Coffs Harbour Health Clinic dated 29 July 2020, Discharge Referral Notes from Coffs Harbour Health Clinic dated 29 July 2020 and a NSW Ambulance Paramedic – Initiated Referral form dated 27 March 2021 were tendered during the hearing.
[119] Exhibits 2, B2 and B3.
[120] Applicant’s SFIC, [8](1).
[121] Ibid.
Further documents provided by Mr Klewer which he claims proves that he has a seizure condition, had ‘medical attendances’ and required pharmaceutical intervention include:[122]
·documents provided by the Department of Human Services, inclusive of all Pharmaceutical Benefits Scheme documents and all Medicare records for the period 1 January 2015 to 1 November 2019. [123]
·documents provided by NSW Ambulance from the year 2017 to 1 November 2019.[124]
·a very substantial bundle of documents from the Coffs Harbour Health Clinic from the year 2017 to 1 November 2019.[125]
·a Seizure Action Plan,[126] author unknown, which includes:
ounder the hearing ‘Seizure Information’ that Mr Klewer experiences ‘GRANDMAL’ seizures, which lasts around two minutes.
oThe Seizure Action Plan indicates, under the hearing ‘When rescue therapy may be needed:’, that in the event of a second seizure or a prolonged initial seizure lasting more than two minutes, 5mls of Midazolam IM is to be given to Mr Klewer Intramuscular.
oThe Seizure Action Plan notes, under the heading ‘Care after seizure’, that the type of help needed is to place Mr Klewer into the recovery position, call an ambulance if needed and to go to hospital.
[122] Ibid, [8].
[123] Exhibit 2, B1.
[124] Exhibit 2, B2.
[125] Ibid, B3.
[126] Exhibit 3. The Tribunal notes that the Seizure Action Plan appears to be tailored to those residing in the United States of America, as it bears the endorsement of Epilepsy Foundation of America Inc.

The possibility of using a seizure watch, specifically a Empatica Embrace Smartwatch, as recommended Ms Evans in her report dated 8 October 2018,[127] was raised with Ms Klewer. She was adamant, despite clear longstanding evidence to the contrary,[128] that a seizure watch would sound an alarm in Mr Klewer’s bedroom, thus possibly disturbing him, given his very good hearing, and therefore possibly causing a seizure.[129] Ms Klewer questioned Ms Evans’s expertise to recommend a seizure watch.[130] She said that she could not see the benefit in a seizure watch as it is not medication nor will it stop seizures.[131] She did not see any advantage in terms of enhancing Mr Klewer’s independence as a result of being able to be monitored from another room.[132] She considered a seizure watch, being made of metal, posed a risk to Mr Klewer as he could hurt himself, particularly his face during ‘vigorous twitching’ which she reports occurs during seizures.[133] Ms Klewer expressed doubt about the reliability and accuracy of a seizure watch. To the extent that a seizure watch could provide a record of seizure activity, Ms Klewer said that she was already keeping a record,[134] and no neurologist had asked her to obtain a seizure watch.[135]
[127] Exhibit 2, A43, 13.
[128] Ibid, 12.
[129] Transcript, P-21, line 45; P-22, line 8; P-129, lines 8 – 14.
[130] Transcript, P-22, lines 12 – 25.
[131] Transcript, P-22, lines 12 – 25.
[132] Transcript, P-21, line 45; P-22, line 8; P-129, lines 8 – 14.
[133] Transcript, P-23, lines 33 – 38; P-46, lines 10 – 15.
[134] Transcript, P-23, lines 25 – 29.
[135] Transcript, P-23, lines 29 – 30.
With respect to the suggestion in Dr Wong’s report regarding increasing Mr Klewer’s independence with devices such as a night monitor, Ms Klewer considers that independence at night time ‘goes out the window’ and that Mr Klewer ‘would not, at any time, say “[O]kay, I want to be more independent at night so let’s have a night monitor”’.[136] She submits that Mr Klewer wants her a ‘couple of metres away’ so that she ‘can hear the most subtle of noises’.[137]
[136] Transcript, P-111, line 29.
[137] Transcript, P-111, lines 11 – 32.
Ms Klewer’s oral evidence, consistent with her statements, was that the treatment of Mr Klewer while in hospital and in the care of paramedics on various occasions was irresponsible - he had been neglected and would be at risk of harm if looked after by someone else,[138] including if someone else monitored him from another room at night to increase his independence.[139] Her presence makes Mr Klewer feel safe and secure and preserves his dignity and privacy – which he really values.[140] She links Mr Klewer’s seizures with stress and considers that her presence in his room at night alleviates his stress.[141] She stated that by her provision of care she is ‘obviously reducing the stress, which is the most important thing’. [142]
[138] See examples Transcript, P-20, lines 18 – 31; P-115, lines 30 – 32.
[139] Transcript, P-129, lines 46 – 47.
[140] Transcript, P-116, lines 10 – 18.
[141] Transcript, P-114, lines 3 -8.
[142] Exhibit 2, A67, [8(a)].
She stated that she has provided excellent care for Mr Klewer all his life.[143] Ms Klewer said that she sleeps next to Mr Klewer at night as that is a critical time during which he is likely to experience seizures.[144] She sleeps very lightly and is therefore always awake when he has a seizure episode.[145] Ms Klewer states that she responds to Mr Klewer’s night seizures by reassuring him, trying to prevent him from falling out of bed, placing him in the recovery position and sometimes injecting him with Midazolam.[146] She also places pillows strategically around the left side of the bed, being the site from which Mr Klewer falls.[147] Her care of Mr Klewer makes him feel safe and secure and preserves his privacy and dignity.[148]
[143] Ibid, A67, [8(e)].
[144] Exhibit 2, A67, [5]. Transcript, P-16, lines 32 – 33.
[145] Exhibit 2, A45, [8].
[146] Ibid, [9].
[147] Ibid.
[148] Transcript, P-166, lines 10 – 18.
Ms Klewer confirmed that she receives a carer’s pension[149] and that she would continue to provide overnight care to Mr Klewer irrespective of the outcome of the proceedings before the Tribunal.[150] During her closing submissions, Ms Klewer stated that it was not a nice or fair comment for the Respondent to suggest that she should be ‘happy’ with the carers pension she receives in light of what it pays for.[151] She said that if she were not caring for Mr Klewer she could work in a range of other jobs.[152] Therefore, she said, a second reason for seeking funding to provide overnight care is to improve her life.[153]
[149] Transcript, P-18, line 35.
[150] Transcript, P-19, lines 5 – 9.
[151] Transcript, P-117, lines 20 – 24.
[152] Transcript, P-117, lines 38 – 43.
[153] Transcript, P-117, line 47.
In her closing submissions Ms Klewer stated that she had established that Mr Klewer ‘would be open to risk of harm or neglect if his current care that is in place is changed’.[154] She also submitted that her Maltese family background means there is a cultural reason for a family member to provide support – she says that there is, in Maltese families, ‘a tendency to watch over’ family members more[155] and ‘keep them closer and love them that little bit more’.[156] She maintained that, in accordance with her Maltese culture, it is appropriate for only her to care for Mr Klewer overnight.[157]
[154] Transcript, P-115, lines 31 – 32.
[155] Transcript, P-115, lines 42 – 43.
[156] Transcript, P-115, line 43.
[157] Transcript, P-115, lines 38 – 46.
She submitted that using an external provider might expose Mr Klewer to abuse.[158] Ms Klewer reiterated that the protection of Mr Klewer’s dignity and privacy, about which he has strong feelings, as reflected in Mr Lucas’s report, meets the first criteria in the Operational Guidelines.[159] As well Ms Klewer repeated her earlier submissions regarding the risks attached to epilepsy and other seizure conditions, including the risk of SUDEP occurring overnight during sleep.[160] She emphasised that Mr Klewer only experienced seizures at night and that they are tonic-clonic seizures.[161] She repeated many times her submissions that even if Mr Klewer’s seizures are psychogenic there is a risk of injury or death occurring.
[158] Transcript, P-116, lines 1 – 2.
[159] Transcript, P-116, lines 10 – 18.
[160] Transcript, P-116, lines 32 – 41.
[161] Ibid.
Ms Klewer was adamant that the care she provided is the only care suitable for Mr Klewer, and the only care with which he would be satisfied.[162]
[162] Exhibit 2, A67, [8(d)].
Ms Klewer submitted ‘that there is no doubt about the incidence of seizures now between the parties’.[163] She linked the seizures to Mr Klewer ’s statement of goals and aspirations[164] and stated that Mr Klewer’s condition is serious and requires the care to keep him safe.[165]
[163] Transcript, P-113, lines 40 – 42.
[164] Transcript, P-113, lines 38 – 40.
[165] Transcript, P-113, lines 42 – 43.
Mr Klewer also contends that the evidence of Ms Burford, Mr Lucas, Dr Choi and Dr Wong support the frequency and nature of his seizures.[166]
[166] Applicant’s SFIC, [7].
Evidence of Ms Burford
Ms Jane Burford, Epilepsy Nurse Specialist, provided a report dated 17 May 2021. She explained to the Tribunal that she had 10 years clinical experience working in the neurophysiology department at Royal Prince Alfred Hospital undertaking diagnostic tests on the brain and nervous system,[167] and over the last 21 years, spent 15 of them working for Epilepsy Action Australia.[168] Ms Burford is employed by Epilepsy Action Australia, a support organisation for people with epilepsy and sometimes other conditions. Its principal activities are in education, training and support, including counselling and advocacy.[169]
[167] Transcript, P-59, lines 46 – 47; P-60, lines 1 – 3.
[168] Transcript, P-60, lines 6 – 7.
[169] Transcript, P-63, lines 34 – 46.
The Applicant’s SFIC relied on Ms Burford to support the proposition that Mr Klewer needs night care to be provided by Ms Klewer, and contended that Ms Burford ‘opinionates [sic] that epilepsy/seizure episode sufferers are at risk of injury if not monitored and in cases [like this] where [Mr Klewer] suffers night Grand Mal and status epilepticus it can lead to death if not properly monitored’.[170]
[170] Applicant’s SFIC, [8(1)].
Ms Burford’s written report purported to provide information about Mr Klewer with respect to the frequency of his seizures, and confirmed uncertainty regarding whether his seizures are epileptic or PNES in nature.[171] It also provided information regarding the risks which flow from living with epilepsy, including fear, and lifestyle limitations of ongoing medical and psychosocial problems.[172]
[171] Exhibit 2, A104.
[172] Ibid.
However, in cross examination Ms Burford explained that she had not undertaken any neurological assessment of Mr Klewer,[173] nor seen any of his medical records prior to the preparation of her report,[174] although she was provided with the hearing bundle in respect of which she had ‘scrolled through the relevant bits’ prior to giving oral evidence.[175] She said that she had relied upon Ms Klewer’s reporting of Mr Klewer’s seizures including as to their severity and frequency,[176] and that she had never observed Mr Klewer having a seizure.[177] Ms Burford was clear that she had no basis upon which to assess Mr Klewer’s level of risk with respect to physical injury arising out of the seizures.[178] Ms Burford also explained that she had not discussed Mr Klewer’s medication with his neurologist, contrary to Ms Klewer’s assertion in that regard.[179]
[173] Transcript, P-64, lines 10 – 12.
[174] Transcript, P-64, lines 13 – 15.
[175] Transcript, P-58, lines 44 – 45.
[176] Transcript, P-64, lines 36 – 38.
[177] Transcript, P-64, lines 44 – 45.
[178] Transcript, P-66, lines 21 – 23.
[179] See Transcript, P-44, lines 13 – 15; P-65, lines 13 – 15.
Regarding the nature of Mr Klewer’s seizures, Ms Burford agreed in her evidence in chief that Mr Klewer experienced tonic-clonic seizures.[180] She also said, including adamantly in re-examination, that it was unclear whether Mr Klewer’s seizures were psychogenic or epileptic.[181] She opined that PNES would only occur at night if Mr Klewer woke first,[182] that both PNES and Grand Mal seizures could cause injury,[183] and that someone having nocturnal tonic-clonic seizures is at the highest risk of SUDEP.[184] Ms Burford also stated that the risk of SUDEP is much greater in people who are unsupervised.[185] She also confirmed that Mr Klewer is adamant about not having external people in the house. [186]
[180] Transcript, P-59, lines 25 – 28.
[181] Transcript, P-59, lines 7 – 9.
[182] Transcript, P-59, lines 14 – 15.
[183] Transcript, P-59, lines 20 – 21.
[184] Transcript, P-59, lines 26 – 27.
[185] Transcript, P-59, lines 40 – 41.
[186] Transcript, P-69, lines 8 – 12.
In cross examination she said that her opinions regarding risks to people with epilepsy, for example with respect to the incidence of SUDEP, were general observations, not specific to Mr Klewer and again confirmed that she could not ‘say with 100% certainty that [Mr Klewer] is having tonic-clonic seizures…’[187] She confirmed that epileptic seizures could be triggered by stress.[188] She also told the Tribunal that she was unaware of physical injuries to Mr Klewer from PNES – her statements in her report in that regard were also general observations.[189]
[187] Transcript, P-65, lines 44 – 46.
[188] Transcript, P-69, lines 9 – 12.
[189] Transcript, P-66, lines 10 – 23.
Ms Klewer asserted to Ms Burford that Mr Klewer being prescribed anticonvulsant medication is evidence that he currently experiences Grand Mal seizures. However, Ms Burford considered that anticonvulsant medication was prescribed because Mr Klewer had a history of seizures and scar tissue on his brain so that, without anticonvulsants, seizures would return,[190] rather than the fact of there being prescribed being conclusive of the nature of Mr Klewer’s current seizures. Ms Klewer also put to Ms Burford that Mr Klewer is not medicated for pseudo-seizures, suggesting therefore that he could not be experiencing pseudo-seizures. Ms Burford’s response was that usually psychogenic seizures would be treated with psychological support and physical therapy.[191]
[190] Transcript, P-68, lines 10 – 14.
[191] Transcript, P-68, lines 22 – 24.
With respect to a seizure watch, Ms Klewer asked Ms Burford to comment upon whether it is possible to ensure that timely assistance can be provided to a user in circumstances where the person assisting is out of the room. Her premise was that should Mr Klewer fall, someone in another room could not reach him in time to aid him, however Ms Burford did not respond directly to that question.
Ms Burford confirmed that seizure watches could alert up to five persons including emergency services,[192] that some seizure watches made a record of seizure activity,[193] and that she did not ‘believe the alarm goes off in [Mr Klewer’s] room’.[194]
[192] Transcript, P-60, lines 19 – 21.
[193] Transcript, P-60, lines 26 – 28.
[194] Transcript, P-61, line 14.
Evidence of Mr Lucas
The Applicant’s SFIC relied upon the reports of Mr Charles Lucas, Psychologist, dated 17 February 2019, 22 May 2021 and 26 May 2021 in support of the following propositions:
·That the evidence of Mr Lucas demonstrates ‘[Mr Klewer’s] psychological condition and his need for night care for his night seizure episodes’.[195]
·That the evidence of Mr Lucas details the ‘strong bond between [Mr Klewer] and [Ms Klewer] and his need for privacy and dignity during the night at which time the seizure episodes occur’.[196]
·That ‘Charles Lucas well documents the increased stress [Mr Klewer] would suffer if he had a stranger in his room at night, that that in itself would increase the stress, increase the seizures which is counterproductive’.[197]
·Mr Klewer’s need for night care to be provided by Ms Klewer is well supported by the expert report of Mr Lucas.
·Mr Lucas well documents the increased stress Mr Klewer would experience if he had a stranger in the room at night and that that in itself would increase the stress, increase the seizures which is counterproductive.
[195] Applicant’s SFIC, [8](2), citing Exhibit 2, A59, 106 and 107.
[196] Ibid.
[197] Applicant’s SFIC, [8](2).
There were also reports of Mr Lucas of 24 February 2017 and 4 July 2018 provided to the Tribunal prior to hearing and an email from Mr Lucas to Ms Klewer dated 25 May 2021 which was tendered during the hearing.
Mr Lucas’s initial impression, as contained in his letter of 24 February 2017,[198] was that Mr Klewer had a mild to moderate adjustment disorder arising from the ongoing presence of the various psychostressors in his life coupled with underdeveloped resources (cognitively and emotionally) in relation to actually being able to deal with these stressors.[199] He made a subsequent diagnosis of generalised anxiety disorder and anxiety in July 2018.[200] With respect to the nature and frequency of seizures, his subsequent reports, and oral evidence, suggest that, while he is uncertain as to whether Mr Klewer has seizures, pseudo seizures or panic attacks, the behavioural outcome is the same: it occasions the need for a carer and counselling to lower anxiety.[201] Mr Lucas opined that the seizures are more frequent at night,[202] their frequency is linked to anxiety[203] and they may require the administration of Midazolam,[204] which is best provided by Ms Klewer rather than any other service provider.[205] He also referred to Mr Klewer’s anxiety, which he said stemmed from background stressors, (which seemed to include Ms Klewer debriefing with Mr Klewer regarding her own stressors)[206] and stated that when Mr Klewer’s anxiety rose, the frequency of seizures increased, and that a change to his care could therefore be detrimental. [207]
[198] Exhibit 2, A10.
[199] Ibid.
[200] Ibid, A31.
[201] Transcript, P-87, lines 35 – 42.
[202] Transcript, P-94, lines 35 – 36.
[203] Exhibit 2, A31.
[204] Transcript, P-95, lines 21 – 27.
[205] Exhibit 2, A31.
[206] Exhibit 2, A59.
[207] Transcript, P-90, lines 35 – 47.
In a further report, dated 17 February 2019, seemingly responsive to Dr Ashkar’s report, Mr Lucas accepts the ‘high probability of the episodes being psychogenic in nature at this stage’,[208] but cautions that the return of Mr Klewer’s former epileptic condition ‘can never be dismissed’ and that in any case, irrespective of the cause of the ‘nocturnal disturbances’ Mr Klewer requires ‘a level of support at night. He says that the optimal situation is that [Mr Klewer] does not live alone and that there is always a sensible degree of monitoring, at least’.[209] In oral evidence Mr Lucas clarified that he was not specifically endorsing a level or amount of overnight care when using the phrases ‘level of support’ and ‘sensible degree of monitoring’ with respect to Mr Klewer.[210] He explained that he concluded that Mr Klewer’s need for consistent overnight care by Ms Klewer is due to the unpredictability of the seizures as reported by Ms Klewer.[211]
[208] Exhibit 2, A59.
[209] Ibid.
[210] Transcript, P-90, lines 25 – 33.
[211] Transcript, P-90, lines 35 – 43.
In the report of 17 February 2019 Mr Lucas also made reference to the association between the need he perceives Mr Klewer has for monitoring and the ‘strong dependency upon [Ms Klewer] over the years’ and her ‘strong and dominant parenting style’. He also notes Mr Klewer’s generalised anxiety disorder and hypervigilance are reinforced by Ms Klewer’s concerns about Mr Klewer. Ms Klewer submitted, with respect to this evidence of Mr Lucas, that Mr Klewer’s hypervigilance arises because he thinks the police are going to break in. She submitted that Mr Klewer’s strong dependency on her arose out of the traumas he experienced in 2015 and 2017 with the police, and that despite experiencing seizures between 2006 and 2011 he did not need support from a psychologist during that time.[212]
[212] Transcript, P-108, lines 30 – 44.
Mr Lucas provided a summary report dated 22 May 2021 for the purposes of the hearing which includes the contents of the reports of 4 July 2018 and 17 February 2019 and concluded that irrespective of the definitive diagnosis, the behavioural outcome (as reported by Mr Klewer and Ms Klewer) is that Mr Klewer can require Midazolam, and frequently that he be transported to hospital by paramedics and admitted for review.[213]
[213] Exhibit 2, A105 and A106.
Similar to his oral evidence, Mr Lucas’s latest report of 26 May 2021 stated that [Mr Klewer] ‘has been totally consistent over time in his absolute preference that [Ms Klewer] remains as his night carer and his preference is based on the degree of trust he has in [Ms Klewer], as well as issues relating to privacy and dignity, as we have discussed’.[214] According to Mr Lucas, Ms Klewer has a unique and specific skill set based on intuition with respect to caring for Mr Klewer.
[214] Exhibit 2, A105.
When asked in cross examination, Mr Lucas confirmed that his knowledge of Mr Klewer’s seizures was based on reporting by Ms Klewer[215] and did not include precise knowledge of the physical manifestations of either of the types of seizures Mr Klewer might experience.[216] This was reinforced in re-examination when it was put to Mr Lucas by Ms Klewer that the use of Midazolam would not be warranted without a ‘great physical manifestation’.[217] Mr Lucas responded: ‘…without seeing it, I can’t really comment’.[218] It was also clear from Mr Lucas’s evidence in re-examination that he thought the ‘main witnesses of the actual episodes have been the ambulance officers who have noted it in the records’.[219]
[215] Transcript, P-91, lines 32 – 33.
[216] Transcript, P-91, lines 18 – 30.
[217] Transcript, P-95, lines 23 -25.
[218] Transcript, P-95, line 25.
[219] Transcript, P-94, lines 21 – 25; P-95, lines 7 – 9.

In re-examination Mr Lucas linked seizure activity to Mr Klewer’s thought patterns, and anxiety.[220] His thesis is that Mr Klewer is occupied during the day, but at night his thoughts turn to anxiety about whether he will have a seizure, which in turn leads to seizure activity.[221] In that regard he drew a parallel with panic attacks which he said could occur as a result of the fear of having a panic attack.[222] He hypothesized that it may be that Mr Klewer has flashbacks at night, and that the consequent increased brain activity could trigger a seizure.[223] Ultimately, he conceded however that he is not a specialist in that regard – it is just his opinion.[224]
[220] Transcript, P-87, lines 34 – 42.
[221] Transcript, P-94, lines 33 – 40.
[222] Transcript, P-94, lines 40 – 42.
[223] Transcript, P-94, lines 45 - 46.
[224] Transcript, P-94, line 47.
Mr Lucas considers that while Mr Klewer is dependent upon Ms Klewer, so too is she dependent upon him. In cross examination Mr Lucas reiterated his conclusion as follows:[225]
…but I’m looking at it as a counselling psychologist point of view with a family, and family dynamic associated with it. In looking at it very pragmatically as well as thinking, well, okay, well this is the current situation, if we changed, it will just be impossible to know whether it’s 10 hours would be required per week or five hours would be, but that the truth of the matter is, is that [Ms Klewer] switches from the mother role to the carer role at the point when [Mr Klewer] has the seizure episode.
[225] Transcript, P-91, lines 2 – 9.
Mr Lucas states that would be desirable for Mr Klewer to develop greater independence and relationships outside his family but recognises the extremely strong bond between him and Ms Klewer, both at home and in their working environment.[226] He concludes his report of 17 February 2019 by stating:[227]
So, in consideration of the entire life circumstances which give rise to the conditions underlying the development of the strong co-dependencies between [Mr Klewer] and [Ms Klewer] it is a pragmatic fact that [Mr Klewer] has naturally developed a long time reliance, trust and faith in [Ms Klewer’s] capacity to care for him and she, in turn, has developed a highly specific skill set and intuition as a parent to anticipate [Mr Klewer’s] needs and generally provide the level of monitoring in respect of his disabilities to an optimum standard reducing the anxiety he might otherwise feel. Added to this, and as we have discussed, [Mr Klewer] understandably has strong concerns in regard to the compromises he will have to make in terms of his privacy and dignity if his nightly care and monitoring is outsourced at this stage.
[226] Exhibit 2, A59.
[227] Ibid.
Mr Lucas’s oral evidence concluded with the following statement:[228]
But it's also got to do with the fact that, he is very trusting of you and it could be said that he's very dependent - it could be said there's also a co-dependent relationship there. But the fact is the fact, the (indistinct) fact itself, and it's very hard to say, okay, well, we could have a different situation occur, which could be like a higher quality situation. And the problem is with that, there's going to be an increase in anxiety, which will then lead to a decrease in quality of life and quality of life functioning. Not only for [Mr Klewer] but also for you, [Ms Klewer], because you're very bonded, and you're very - and to spend time away and to allow the care to go to someone, and to trust that person, would be a very difficult thing for you to do too.
[228] Transcript, P-102, lines 15 – 24.
Evidence of Dr Wong
Dr Cara Wong, Clinical Neuropsychologist, provided a report dated 30 November 2020, in respect of an assessment which took place on 3 November 2020.[229] The Applicant’s SFIC relies upon Dr Wong as support for the proposition that Mr Klewer ‘requires a carer to monitor his epilepsy and provide pharmaceutical intervention if required’, that the most appropriate person to continue to provide night care is Ms Klewer as ‘Mr Klewer feels safe and comfortable’ with her as she ‘completely understands his needs’, and that his ‘need for such night care [to be provided by Ms Klewer] is well supported as per her expert report.’[230]
[229] Exhibit 2, A103.
[230] Applicant’s SFIC, [8].
Dr Wong’s report states that Mr Klewer was referred to her for an up-to-date review of his cognitive functioning.[231] Much of the report is therefore not relevant to the matters in issue before the Tribunal. The report summarises the neurologists’ reports of Drs Spira, Taneya and Loiselle, and sets out a range of possible seizure types which might be experienced by Mr Klewer, including psychogenic seizures or panic attacks. It also contains an extensive history of Mr Klewer and summarises reports from Ms Klewer and Mr Klewer as to the frequency of the seizures (every few weeks) and that they often occur at around 2AM, are exacerbated by stress, and may require Mr Klewer to be injected with Midazolam by Ms Klewer. Dr Wong recorded that Ms Klewer told her that Mr Klewer’s last seizure required resuscitation. [232] Dr Wong’s conclusions include:[233]
As [Mr Klewer’s] mother reported, [Mr Klewer] is constantly in fear that he “could die” in the middle of the night. [Mr Klewer] requires a carer to monitor his epilepsy and provide pharmacological intervention if required. It makes sense that while Mr Klewer is living with [Ms Klewer], she remains his night-time carer. Mr Klewer feel safe and comfortable knowing [Ms Klewer] completely understands his needs. However, should Mr Klewer want to become more independent or live with his girlfriend one day, devices like an [sic] seizure night monitor may be beneficial, and also give his carers/family some peace of mind overnight. I have included some links to devices below.
…
Mr Klewer and [Ms Klewer] could trial a seizure monitor which might help to decrease the carer burden and anxiety they both feel in the night-time, and increase Mr Klewer’s independence.
[231] Exhibit 2, A103.
[232] Ibid.
[233] Ibid.
Evidence of Ms Evans
Ms Gemma Evans, Occupational Therapist, provided a Functional Assessment dated 29 September and 8 October 2018[234] following a functional assessment that took place on 29 September 2018.[235] The Applicant’s SFIC contends that ‘Ms Evans attended [Mr Klewer’s] home and carried out an assessment of [Mr Klewer’s] health/physical problems and sleeping arrangements.
[234] The Tribunal notes that the report is dated 29 September 2018 and 8 October 2018.
[235] Exhibit 2, A43.
Relevant to these proceedings it recommended:[236]
Maintain current supports – Ms Klewer to monitor seizure activity and help as required – Ms Klewer and [Mr Klewer] declined external supports in the home to assist with seizure management. Continue to utilise cushioning around the bed to soften effects of falls – Ms Klewer stated that this has been the most effective of tested solutions to assist with falls due to seizure at night. It also recommended a seizure watch for a range of purposes including sleeping, to monitor seizure activities and maintain a thorough log/record of seizures to determine whether there is a pattern of events. With respect to the recommended seizure watch (an Empatica Embrace SmartWatch), the report stated that it: is an easy to use, non-invasive wristwatch that continuously monitors movements and instantly alerts family members and caregivers upon the onset of repetitive shaking, and also has an alert button for users to summon assistance. This watch will enable [Mr Klewer] the potential to be able to sleep in a room of his own whilst still alerting Ms Klewer of seizure episodes in a timeframe that allows her to access and provide medical supports quickly and as required.
[236] Ibid.
The Respondent contends that Ms Evan’s report was prepared on the basis of reports to her that ‘[Mr Klewer] had epilepsy’ and that ‘the majority of the seizures experienced were Grand Mal’.[237] The Respondent further contends that none of the treating neurologist’s reports were provided to Ms Evans – thus she proceeded on the basis that Mr Klewer only experienced epileptic seizures and did not consider that the seizures might be psychogenic in nature.[238] Ms Evans considers that one to one support is ‘required’, noting that ‘it has been recommended that [Mr Klewer] be provided with around the clock supports’.[239] It is not clear upon whose recommendation Ms Evans relies, however I note that the only report she referred to having viewed in the preparation of her report was that of Mr Lucas dated 4 July 2018, which states ‘just to relate [sic] that it is clear that under the scheme optimal care for [Mr Klewer] especially during the night period and during his sleep time, when he is more susceptible to seizures and when he may require intervention with midazolam is best provided by [Ms Klewer] rather than a service provider’.[240]
[237] Respondent’s SFIC, [65].
[238] Ibid.
[239] Exhibit 2, A43, 10.
[240] Exhibit 2, A31.
Evidence of Dr Choi
Dr Hyun Ah Hannah Choi, Psychiatrist, provided a report dated 23 May 2020 which was also before the Tribunal.[241] It is described as a general mental health assessment.
[241] Ibid, A100.
The Applicant’s SFIC contends that Dr Choi states that Mr Klewer ‘needs night carer for Epilepsy, wants [Ms Klewer], not NDIS carer’, and that he is well supported by Ms Klewer.[242] It also refers to Dr Choi as an expert whose report ‘well supports’ the need for such night care to be provided by Ms Klewer.
[242] Applicant’s SFIC, [8].
The report, which noted that Dr Choi saw Mr Klewer in the presence of Ms Klewer, summarised the ongoing concerns and treatment reported by Mr Klewer, including those flowing from police incidents in 2015 and 2017.[243] They included that Mr Klewer had been diagnosed by his psychologist with generalised anxiety disorder arising from the claimed assaults by the police. It also noted that the neurological assessment had indicated that Mr Klewer may have been having panic attacks.[244]
[243] Exhibit 2, A100.
[244] Ibid.
Evidence of Dr Ashkar
On behalf of the Respondent Dr Peter Ashkar, Neuropsychologist, provided a report dated 14 January 2019[245] and gave oral evidence at the hearing. Dr Ashkar’s report reviewed a number of reports which had been provided to him,[246] set out a history with respect to Mr Klewer which was provided to him almost entirely by Ms Klewer (who accompanied Mr Klewer to the appointment)[247] and set out the results of psychometric testing and concluded with a summary and opinion.[248] Dr Ashkar, based on the reports he had reviewed, could not conclude that Mr Klewer continued to experience tonic-clonic seizures,[249] and considered that ‘objective information is clearly needed about the role seizures play in Mr Klewer’s care needs to evaluate [Ms Klewer’s] claim of exceptional circumstances’.[250]
[245] Exhibit 2, A52
[246] Ibid, [2].
[247] Exhibit 2, A52, [9] – [17].
[248] Ibid, [18] – [23].
[249] Ibid, [24].
[250] Ibid.
Dr Ashkar also made a number of recommendations regarding referrals for Mr Klewer to a clinical neuropsychologist and speech therapist,[251] and in relation to employment, recommended that he be linked with a disability employment service.[252]
[251] Ibid, [27].
[252] Ibid.
Dr Ashkar opined that Mr Klewer’s anxiety is related ‘to his very limited sense of self-efficacy’ which should be ‘the focus of his psychological treatment’.[253] Dr Ashkar’s conclusion in his report, as confirmed in his evidence in chief, was:[254]
Anxiety is common in seizure disorders and Mr Klewer's anxiety in relation to his seizures (if indeed he is having seizures) is closely tied to his very limited sense of self-efficacy (i.e., his limited sense of control over his seizures and/or his life more generally). Increasing his sense of self-efficacy will be an important focus of his psychological treatment in helping him to manage his anxiety. [Ms Klewer’s] dominance and control (I do not use these words lightly) of his care needs (no matter how well intentioned she may be) limits his sense of self efficacy (and ultimately his dignity by compromising his independence) and this will have serious implications for his psychological health into the future if not addressed today. Mr Klewer and [Ms Klewer] are therefore encouraged to engage in counselling that fosters a healthy and mutual understanding of his need to achieve greater autonomy and independence into the future, with or without [Ms Klewer] or a partner to take care of him.
[253] Ibid, [28].
[254] Ibid.
Ms Klewer challenged Dr Ashkar’s evidence on a number of bases, including that it is unusual for the NDIA to retain an expert who is paid to provide reports for insurance companies and medico legal reports,[255] to which Dr Ashkar responded that he is frequently retained to provide reports for the NDIA, and others, for payment.[256] He explained that he has a professional and ethical obligation to be impartial and that he does not have ‘a particular interest in the outcome of any assessment’ he undertakes, and that he gets the same fee regardless of the outcome of the report.[257]
[255] Transcript, P-31, lines 7 – 10.
[256] Transcript, P-31, lines 10 – 12.
[257] Transcript, P-30, lines 35 – 40.
Ms Klewer said that Dr Ashkar’s assessment of Mr Klewer had been unnecessarily long and consisted of Dr Ashkar ‘bombarding’ Mr Klewer with questions.[258] Dr Ashkar disagreed that he ‘bombarded’ Mr Klewer with questions, confirmed that he provided Mr Klewer with the appropriate opportunities for breaks and stated that the assessment took longer than it otherwise might because it was attended by Ms Klewer who requested that Dr Ashkar listen to her and answer her questions.[259]
[258] Transcript, P-32, lines 22 – 23.
[259] Transcript, P-32, lines 5 – 14.
Ms Klewer also criticized Dr Ashkar’s evidence on the basis that he is not a neurologist and is not qualified to comment on Mr Klewer’s epilepsy, nor the outcome of the EEG, nor should he have concluded that there is no objective evidence that Mr Klewer is experiencing seizures.[260] In that regard she asserted that Dr Ashkar now has copies of the ambulance and hospital records evidencing seizures.[261] Ms Klewer also maintained that Dr Ashkar had failed to take into consideration the information that Mr Klewer mixes with the extended family and others including while at work at the markets.[262]
[260] Transcript, P-31, lines 38 – 39; P-35, lines 24 – 30.
[261] Transcript, P-35, lines 18 – 22.
[262] Transcript, P-40, lines 15 – 18.
Dr Ashkar acknowledged that he is not a neurologist and confirmed that he is not qualified to diagnose or comment upon the diagnosis of epilepsy.[263] He pointed out that his conclusions were based on the reports he reviewed and related to the absence of objective evidence regarding the status of the seizures. He explained that his statement that the ‘EEG telemetry over two days in March 2018 failed to identify seizure activity and the semiology Mr Klewer described in previous assessments is inconsistent with Grand Mal seizures’[264] was part of his evaluation of the reports with which he had been provided and supported his conclusion that further investigation and objective information was needed to better understand the nature of Mr Klewer’s seizures and hence his support needs.[265] He also reiterated that his report had taken into consideration all the material with which he had been provided, and that he had not failed to take account any of such information.[266] He also confirmed that he and not been provided with hospital and ambulance records to which Ms Klewer referred.[267]
[263] Transcript, P-35, lines 1 – 2.
[264] Exhibit 2, A52, [4].
[265] Transcript, P-35, lines 5 – 9; P-38, lines 2 – 11.
[266] Transcript, P-38, lines 42 – 47.
[267] Transcript, P-35, lines 15 – 18.
In oral evidence Dr Ashkar maintained his views as set out in his report,[268] notwithstanding Ms Klewer put to him that he only came to that conclusion because ‘he needed to write something negative’[269] and expanded upon them by saying: because ‘Ms Klewer is in control of [Mr Klewer’s] care needs, it limits his sense of self efficacy because it does not give him the chance to develop the autonomy and independence that he needs to navigate his health needs and right into the future’.[270]
[268] Transcript, P-39, lines 18 – 22.
[269] Transcript, P-39, lines 15 – 16.
[270] Transcript, P-39, lines 12 – 22.
Ms Klewer was at pains to point out the differences she considered exist between the reports of Dr Ashkar on the one hand, and Dr Wong and Mr Lucas on the other , and questioned Dr Ashkar about such perceived differences..[271] Dr Ashkar maintained that there was similarity between some of his conclusions and those of Dr Wong and Mr Lucas.[272] Dr Ashkar agreed with Mr Lucas’s statements regarding the extent to which Mr Klewer’s functioning and support needs are impacted upon by his anxiety,[273] and the impact of some of Ms Klewer’s behaviours upon his life.[274] Dr Ashkar also referred to the observations of Mr Lucas regarding the ‘dependent relationship [Mr Klewer] has with [Ms Klewer] and the need for him to develop autonomy in all areas of his life’[275] and concluded that it would be desirable for Mr Klewer to be more generally independent. He also agreed with both Mr Lucas’s[276] and Dr Wong’s[277] conclusions that Mr Klewer felt ‘safe and comfortable with [Ms Klewer]’.
[271] Transcript, P-32 – 35.
[272] Transcript, P-29, lines 10 – 15.
[273] Transcript, P-29, lines 18 – 19.
[274] Transcript, P-29, lines 24 – 27.
[275] Exhibit 2, A59.
[276] Transcript, P-34, lines 36 - 40
[277] Transcript, P-33, lines 33 - 34
Taking all of the evidence into account, the Tribunal accepts, as does the Respondent, that Mr Klewer experiences seizures. The evidence of the neurologists variously concludes that the seizures could be a mixture of epileptic and psychogenic or panic attacks. No testing as recommended by the neurologists to ‘pinpoint the diagnosis’ has been completed. There is no evidence before the Tribunal which rules out pseudo-seizures. Significantly, none of the neurologists recommend that Mr Klewer is monitored overnight.
I find that Mr Klewer has experienced no serious seizure activity since the medication change took effect in May 2021.[278] The Tribunal does not accept that the risk of harm which Ms Klewer asserts is evidenced by the photograph of Mr Klewer in a neck brace in hospital is typical, and further notes that the result of the x-ray undertaken to investigate the claimed neck injury found ‘no acute vertebral fracture or vertebral subluxation identified.’[279]
[278] Transcript, P-18, lines 1 – 2.
[279] Exhibit 2, A65.
In relation to medication Dr Kalband identified that the dosage of Lamotrigine had been ‘dismally sub-therapeutic’ for the preceding 12 years, and his recommendations made in November 2020 that it be increased were not fully adopted until May 2021. A number of the neurologists commented upon Ms Klewer’s attitude to medication and the medication regime generally, including with respect to the need for caution with respect to the use of Midazolam and the efficacy of medical marijuana in relation to Mr Klewer. This coupled with the evidence that there is no formal regular regime of neurology review of Mr Klewer causes the Tribunal to question the rigour with which Mr Klewer’s impairments are managed, and whether it is consistent with the level of risk and severity of the seizures as claimed by Ms Klewer.
Almost all of the evidence regarding seizures claimed to be experienced by Mr Klewer are reported by Ms Klewer. While Ms Klewer spent some time studying to become a nurse more than 20 years ago, she has no qualifications to assess the nature and frequency of seizures experienced by Mr Klewer.
Ms Burford relied on Ms Klewer’s reporting to reach her written conclusions and Ms Evans relied upon reports from Ms Klewer, Mr Lucas, and Mr Klewer. Mr Lucas seemed to rely on the reports of Mr Klewer and Ms Klewer as to Mr Klewer’s seizure activity, although he agreed with Ms Klewer that he had seen documents of neurologists, treating general practitioners and local hospital and ambulance.[280] He said, as set out above in paragraph [95] that he thought the main witnesses to the actual episodes were ambulance officers. Neither Mr Lucas nor Ms Burford have witnessed Mr Klewer having a seizure. Even if he had witnessed Mr Klewer’s seizures, Mr Lucas is not qualified to comment as to their nature or frequency, nor the level of care Mr Klewer requires, including with respect to the administration of Midazolam.
[280] Transcript, P-87, lines 15 – 17.

Taking into consideration all of the evidence I am not satisfied that Ms Klewer providing overnight care to Mr Klewer will be, or is likely to be effective and beneficial for Mr Klewer, having regard to current good practice.
Paragraph 34(1)(e) – takes account of what it is reasonable to expect of families and Paragraph 34(1)(f) – most appropriately funded or provided through the NDIS
The Respondent’s contentions regarding these criteria were interrelated. They were that Ms Klewer has not forgone paid employment to care for Mr Klewer nor does she seek respite from providing such care.[320] She receives a carer’s pension.[321] She lives full time with Mr Klewer and will not allow an external carer into the house to care for him.[322] The seizures occur about one to three times per month.[323] If Mr Klewer requires overnight care it is not unreasonable for Ms Klewer to continue to provide overnight care on these occasions, and she is paid to do so through the social security system.[324] To that end the social security system is the more appropriate source of support if such is required.[325]
[320] Respondent’s SFIC, [114].
[321] Transcript, P-18, line 35.
[322] Respondent’s SFIC, [115].
[323] Ibid.
[324] Respondent’s SFIC, [115].
[325] Ibid.
The Respondent’s submissions at hearing relied on Ms Klewer’s evidence that she will continue to provide care for Mr Klewer irrespective of the decision of the Tribunal.[326] The submission also referred to the fact that Mr Klewer lives with Ms Klewer.[327] Subsection 33(5) of the NDIS Act provides that in deciding whether to approve the statement of participant’s supports the CEO must have regard to the participant’s statement of goals and aspirations, which by reference to subsection 33(1) of the NDIS Act must include a statement which specifies the environmental and personal context of the participant’s living, including the participants:[328]
(i)Living arrangements; and
(ii)Informal community supports and other community supports; and
(iii)Social and economic participation.
[326] Transcript, P-120, lines 7 – 10.
[327] Transcript, P-124, lines 29 – 31.
[328] NDIS Act, s 33(1)(b).
It follows therefore, the Respondent submitted, that given that Ms Klewer lives with Mr Klewer and will continue to do so, and will continue to provide care for him, that means it is reasonable for her to continue to do so and not be funded by the NDIS.[329]
[329] Transcript, P-120, lines 7 – 10.
Mr Klewer’s submissions in response to this submission are that the Respondent should not seek to take advantage of Ms Klewer, and that compared to supports provided in other matters these were reasonable supports to request.[330] Ms Klewer submitted that it takes a great deal of courage to support Mr Klewer and that without her care he would have had to go to hospital far more frequently.[331] It would be inhumane for him to be left alone at night because his seizure activity had reduced since May 2021.[332] Epilepsy is a serious condition with considerable risk, including violence associated with the seizures and that Mr Klewer needs Midazolam as injected by her. Mr Lucas considers that as Ms Klewer and Mr Klewer live together it is a pragmatic solution, and Dr Wong, on the assumption that a night-time carer is needed, considers that ‘it makes sense that while Mr Klewer is living with [Ms Klewer], she remains his night carer’.[333]
[330] Transcript, P-127, lines 30 – 31.
[331] Transcript, P-126, lines 41 – 43.
[332] Transcript, P-126, line 1.
[333] Exhibit 2, A103.
Mr Klewer’s seizure plan sets out his medication and provides that in the event he has a seizure he is to call an ambulance and go to hospital.[334] The Respondent submits on that basis the support should be characterised as something which helps Mr Klewer manage the severity of a seizure and is most appropriately provided through the health system.[335]
[334] Exhibit 3. The Tribunal notes that the Seizure Action Plan appears to be tailored to those residing in the United States of America, as it bears the endorsement of Epilepsy Foundation of America Inc.
[335] Transcript, P-125, lines 4 – 13.
As is set out above, I do not consider that Mr Klewer requires overnight care from Ms Klewer. If any overnight monitoring is needed it can occur by way of low-cost assistive technology. Mr Klewer’s submission regarding supports in other matters as set out in paragraph [158], the Tribunal does not consider the supports provided to participants in other matters is relevant. The Tribunal accepts that Ms Klewer considers that she has acted with courage and that epilepsy is a serious condition, and that generally, in accordance with Ms Burford’s evidence, there is risk. However, the evidence in this matter is that Mr Klewer’s epilepsy is now well controlled since his increase in medication and his other submissions related to these criteria are not supported by the evidence or findings.
Therefore, I cannot be satisfied that the funding sought by him takes account of what it is reasonable to expect families, carers, informal networks, and the community to provide, and it is accordingly not necessary to make findings about the other submissions made.
Similarly, with respect to whether the support is most appropriately funded by the NDIS, and 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 – clearly if Mr Klewer requires an ambulance that is the purview of the health system. However, beyond that, given that I am not satisfied that overnight care is needed I am unable to be satisfied that the support sought is most appropriately funded through the NDIS.
Operational Guidelines
As set out above, Mr Klewer submits that clause 11.1 of the Operational Guidelines 11 applies and that there are exceptional circumstances such that the NDIA should fund Ms Klewer to provide overnight care for Mr Klewer. As is set above, I am not satisfied that overnight care is reasonable and necessary, and accordingly the question of whether Ms Klewer should be funded to provide such care does not arise. However, for completeness I set out below Mr Klewer’s contentions and submissions in relation to exceptional circumstances.
The Applicant’s SFIC includes that Mr Klewer’s ‘privacy and dignity are not protected if his night care is outsourced’.[336] Ms Klewer made submissions consistent with that contention. She also submitted that her Maltese background provides cultural reasons that would never allow her to permit another to provide overnight care for Mr Klewer, based on the particular care Maltese families take of one another. She further submitted that there is a ‘high’ risk of harm if others care for Mr Klewer overnight, and that she has always provided the best care for him, keeping him safe, which is paramount. As well she submitted that Mr Klewer is highly vulnerable and feels safe and comfortable with her, that he will experience a deterioration in his epilepsy if there is added stress, and has strong personal views regarding his care.
[336] Applicant’s SFIC, [8].
The Respondent submitted that Ms Klewer’s statements were vague and only adopted the examples provided in the Operational Guidelines. I accept that submission. I accept that the phrase ‘exceptional circumstances’ is incapable of exhaustive statement, in accordance with the Respondent’s SFIC, which refers to the following statements regarding ‘exceptional circumstances’:
82.In Carr v The State of Western Australia [2007] HCA 47 [162], the High Court stated that the phrase “exceptional circumstances" should be given a meaning appropriate to the context in which it appears.
83.In Plaintiff M174/2016 v Minister for Immigration and Border Protection [2018] HCA 16 at [30], the High Court held:
Quite what will amount to exceptional circumstances is inherently incapable of exhaustive statement. The word “exceptional", in such a context, is not a term of art but "an ordinary, familiar English adjective": "[t]o be exceptional a circumstance need not be unique, or unprecedented, or very rare; but it cannot be one that is regularly, or routinely, or normally encountered".
With respect to Mr Klewer’s submissions I make the following observations. There is no independent evidence regarding the cultural considerations Ms Klewer raises. There is no objective evidence that Mr Klewer would be at risk of harm or neglect if not attended by Ms Klewer overnight – if overnight care were necessary, which I have found it is not. Ms Klewer’s other submissions regarding ‘exceptional circumstances’ are already dealt with in the reasons above – that, should overnight monitoring be required, Mr Klewer’s privacy and dignity can be preserved by the use of assistive technology. Based on the findings set out in paragraphs [136] and [137], I am not satisfied that Ms Klewer provides the best care for Mr Klewer, in terms of the impact she has upon his stress. I am also not satisfied as to the extent to which the ‘strong pFersonal views’ he expresses are genuinely his, particularly in view of the evidence of Dr Ashkar regarding Ms Klewer’s dominance and control and the evidence of Dr Spira as to Mr Klewer’s remarks to him regarding Ms Klewer. I am unable to be satisfied as to Mr Klewer’s vulnerability on the basis of the evidence before me. I accept that Mr Klewer feels safe and comfortable with Ms Klewer, but as set out above, do not accept that that is consistent with Mr Klewer’s goals of independence and to live a healthy and supported life, particularly in terms of his psychological health. I also observe that many of the matters raised by Ms Klewer as amounting to exceptional circumstances are issues regularly, routinely, or normally encountered with respect to the provision of supports for participants in the NDIS, and thus are not within the circumstances contemplated in the cases referred to above.
CONCLUSION
Given the findings set out above that I cannot be satisfied that Mr Klewer requires overnight care, that such a support will not assist him to pursue the goals, objectives and aspirations included in his plan, nor will it assist him to undertake activities so as to facilitate his social and economic participation, nor does the support he seeks represent value for money in that its costs are reasonable, relative to both the benefits achieved and the cost of alternative support (such as a seizure watch), nor is the support likely to be effective and beneficial for Mr Klewer, having regard to current good practice. Further, as I am not satisfied that the support should be provided, I cannot be satisfied that the funding of the support sought takes account of what it is reasonable to expect families, carers, informal networks and the community to provide. Nor can I be satisfied that the support is most appropriately funded or provided through the NDIS, as I am not satisfied that it needs to be provided at all.
Accordingly, the Tribunal affirms the decision under review pursuant to paragraph 43(1)(a) of the Administrative Appeals Tribunal Act 1975 (Cth).

I certify that the preceding 168
(one hundred and sixty-eight) paragraphs are a true copy of the reasons for the decision herein of Deputy President F Meagher.

169.

170.

…………………[SGD]………………..
Associate
Dated: 30 March 2022

Dates of Hearing: 17, 18 and 19 November 2021

Representative for the Applicant:

Counsel for the Respondent:

Ms L Klewer

Mr T Liu

EXHIBIT REGISTER

Exh. # Doc ID Description of Exhibit Date of Document Party who submitted

1 Section 37 Documents filed on 23 August 2018

Part A – General Documents

T1 Application for Review of Decision 23.07.2018 R

T2 Internal Review Decision 23.07.2018 R

T3 Neurology Report, Dr Paul Spira (Consultant Neurologist) 12.10.2017 R

T4 Neurology Report, Dr Sanjeev Taneja (Consultant Neurologist) 28.11.2017 R

T5 Email, Applicant’s Mother to Respondent, attaching Report, Dr Ivan Mark Young (Ophthalmic Surgeon), dated 01.06.2016 05.03.2018 R

T6 Letter, Respondent to Applicant, access granted 12.03.2018 R

T7 Email, Applicant’s Mother to Respondent, attaching: 27.04.2018 R

Declaration of NDIS Service Provider Suitability

01.05.2018 R

NDIS Service Provider Application

27.04.2018 R

T8 NDIS Service Provider Participant Agreement 01.05.2018 R

T9 Email correspondence, between Applicant and Respondent, NDIS Price Guide 1.05.2018 –
03.05.2018 R

T10 Email, Applicant’s Mother to Respondent, NDIS Participant Statement and Goals 02.05.2018 R

T11 Extracts of Interactions Record 14.05.2018 –
10.08.2018 R

T12 Email, Respondent to Applicant’s Mother, Accessing Funding 25.05.2018 R

T13 Email, Orthomotion Advance Rehab Centre to Applicant’s Mother, attaching Service Agreement 02.07.2018 R

T14 Email, Respondent to Applicant’s Mother, attaching: 13.07.2018 R

Psychology Report, Dr Charles Lucas (Consulting Psychologist)

04.07.2018 R

Plan Review Request Form, completed by Applicant’s Mother

13.07.2018 R

T15 Email, Internal Communication, Confirmation of Review Request (duplicate attachments omitted) 18.07.2018 R

T16 Email, Respondent to Applicant’s Mother, regarding Application Process to be Appointed Plan Nominee 24.07.2018 R

T17 NDIA Agreement to be Appointed Plan Nominee for Applicant Form 24.07.2018 R

T18 Email, Respondent to Applicant’s Mother, Review Process Queries 27.07.2018 R

T19 Letter, Respondent to Applicant, confirmation of plan nominee appointment 10.08.2018 R

T20 NDIS Access Request – Supporting Evidence Form -      R

Part B – Participant Plans

T21 NDIS Plan (31.05.2018 – 31.05.2019) – Original Decision 01.06.2018 R

T22 National Disability Insurance Scheme Act 2013 (Cth), s 44 -      R

T23 National Disability Insurance Scheme (Plan Management) Rules 2013 (Cth) -      R

T24 National Disability Insurance Scheme – Operational Guidelines – Planning Printed on 2.08.2018 R

2 Hearing Bundle filed on 20 July 2021

Volume A – Evidence

A1 Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon) 10.02.2010 -

A2 Letter from Miss Elizabeth Lewis (Neurosurgeon) 10.03.20210 -

A3 Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon) 21.04.2010 -

A4 Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon) 13.12.2011 -

A5 Notes of Dr Miroslava Kon 31.01.2015 -

A6 Letter from Associate Professor Ernest Somerville
(Neurologist) 16.06.2015 -

A7 Letter from Dr Syed Ali Raza, Tristar Medical Group – Coffs Harbour 24.08.2015 -

A8 Letter from Associate Professor Ernest Somerville
(Neurologist) 07.09.2015 -

A9 Medical Certificates, Dr Tosan Ajuyah 01.02.2017 -

A10 Psychologist Report, Charles Lucas (Psychologist) 24.02.2017 -

A11 Medical Certificate, Dr Tosan Ajuyah 24.02.2017 -

A12 Letter from Cisco Schmetzer (Osteopath) 30.03.2017 -

A13 Quotation for Orthotics by Orthomotion 26.05.2017 -

A14 Letter from Costal Medical Clinics 15.08.2017 -

A15 Neurology Report, Dr Paul Spira (Consultant Neurologist) 12.10.2017 -

A16 Neurology Report, Dr Sanjeev Taneja (Consultant
Neurologist) 28.11.2017 -

A17 Report by Dr Chandramouli Bharati, Radiologist 04.12.2017 -

A18 Reuber M and Brown RJ, Understanding Psychogenic Nonepileptic Seizures - Phenomenology, Semiology and the Integrative Cognitive Model, Seizure 44 2017 -

A19 Email, Applicant’s Mother to Respondent, attaching Report, Dr Ivan Mark Young (Ophthalmic Surgeon), dated 01.06.2016 05.03.2018 -

A20 Letter, Respondent to Applicant, access granted 12.03.2018 -

A21 Letter by Dr Sanjeev Taneja, Neurologist 18.04.2018 -

A22 Email, Applicant’s Mother to Respondent, attaching 27.04.2018 -

Declaration of NDIS Service Provider Suitability

01.05.2018 -

NDIS Service Provider Application

27.04.2018 -

A23 NDIS Service Provider Participant Agreement 01.05.2018 -

A24 Email correspondence, between Applicant and Respondent, NDIS Price Guide 1.05.2018 –
03.05.2018 -

A25 Email, Applicant’s Mother to Respondent, NDIS Participant Statement and Goals 02.05.2018 -

A26 Extracts of Interactions Record 14.05.2018 –
10.08.2018 -

A27 Email, Respondent to Applicant’s Mother, Accessing Funding 25.05.2018 -

A28 NDIS Plan (31.05.2018 – 31.05.2019) – original decision 01.06.2018 -

A29 Espay AJ et al, Current Concepts in Diagnosis and Treatment of Functional Neurological Disorders, JAMA Neurology 04.06.2018 -

A30 Email, Orthomotion Advance Rehab Centre to Applicant’s Mother, attaching Service Agreement 02.07.2018 -

A31 Email, Respondent to Applicant’s Mother, attaching: 13.07.2018 -

Psychologist Report of Dr Charles Lucas (Consulting
Psychologist) 04.07.2018 -

Plan review request form completed by Applicant’s mother 13.07.2018 -

A32 Email, Internal Communication, Confirmation of Review Request 13.07.2018 -

A33 Application for review of decision 23.07.2018 -

A34 Internal review decision 23.07.2018 -

A35 Email, Respondent to Applicant’s Mother, regarding Application Process to be Appointed Plan Nominee 24.07.2018 -

A36 NDIA Agreement to be Appointed Plan Nominee for Applicant Form 24.07.2018 -

A37 Email, Respondent to Applicant’s Mother, Review Process Queries 24.07.2018 -

A38 Letter, Respondent to Applicant, confirmation of plan nominee appointment 10.08.2018 -

A39 NDIS Access Request – Supporting Evidence Form -      -

A40 Letter by Harry Groom, Physiotherapist 30.08.2018 -

A41 Letter by Dr Andre Loiselle, Neurologist 19.09.2018 -

A42 Plan review request form by Applicant’s mother 04.10.2018 -

A43 Report of Gemma Evan, Occupational Therapist 08.10.2018 -

A44 Email from Applicant’s mother to Tribunal – Statement of Lived Experience 17/10/2018 -

A45 Statement of Lived Experience prepared by Applicant’s mothers 17.10.2018 -

A46 Email from Applicant’s mother to Tribunal and Bridget Lawler – further evidence 25.10.2018 -

A47 Briefing letter to Dr Peter Ashkar 01.11.2018 -

A48 Curriculum Vitae of Dr Peter Ashkar - -

A49 Curriculum Vitae of Gemma Evans -      -

A50 Email chain between Tribunal, Respondent and Applicant’s mother regarding the Respondent’s request for independent assessment 07.11.2018 -

A51 Email of Applicant’s mother to Tribunal and Bridget Lawler enclosing plan nominee registration 15.11.2018 -

A52 Report of Dr Peter Ashkar, Neuropsychologist 14.01.2019 -

A53 Email from Applicant’s mother to Health Care Complaints Commission 15.01.2019 -

A54 Letter by Andre Loiselle 17.01.2019 -

A55 Letter from Health Care Complaints Commission to Dr Peter Ashkar 29.01.2019 -

A56 Email from the Respondent to Tribunal and Applicant’s mother regarding conciliation arrangements 11.02.2019 -

A57 Email from the Applicant’s mother to the Tribunal with complaint regarding assessment 11.02.2019 -

A58 Email from Applicant’s mother to Tribunal regarding conciliation arrangements 15.02.2019 -

A59 Report by Charles Lucas 17.02.2019 -

A60 Email from the Applicant’s mother to the Tribunal regarding further evidence 18.02.2019 -

A61 Email from the Tribunal to Applicant’s mother and Respondent advising Applicant can attend conciliation by telephone 27.02.2019 -

A62 Medical Certificate by Dr Mary Yan Paredes, General Practitioner 08.04.2019 -

A63 Letter from Health Care Complaints Commission to Dr Peter Ashkar – Decision 11.04.2019 -

A64 Email from the Applicant’s mother to the Tribunal with concern regarding independent assessment 17.04.2019 -

A65 Email from the Applicant’s mother to the Tribunal and Bridget Lawler attaching Orthomotion quote 23.04.2019 -

A66 Email from the Applicant’s mother to the Tribunal and Bridget Lawler regarding Orthomotion quote 08.05.2019 -

A67 Statement of live experience by the Applicant 08.05.2019 -

A68 Email from the Applicant’s mother to the Tribunal regarding the Applicant’s further evidence 09.05.2019 -

A69 Statement of live experience by the Applicant 09.05.2019 -

A70 NDIS Plan (03.06.2019 – 02.12.2018) -

A71 Email from Applicant’s mother to the Tribunal – Report of Andre Loiselle - -

A72 Video-EEG Telemetry Report by Dr Ernest Somerville, Director of Comprehensive Epilepsy Services and Dr Rui Guan, Epilepsy Fellow - -

A73 Discharge Letter by Dr Ernest Somerville - -

A74 Record of Interactions (dated 13.12.2017 – 11.06.2019) Various -

A75 Correspondence from Applicant’s mother to Agency and Tribunal 03.07.2019 -

A76 Correspondence from Applicant’s mother to Agency and Tribunal 05.07.2019 -

A77 Correspondence from Applicant’s mother to Agency, Mr Lucas and Ms Maria Moreno from the Health Care Complaints Commission 06.07.2019 -

A78 Coffs Harbour Health Campus Discharge Referral Note 07.07.2019 -

A79 Correspondence from Applicant’s mother to Agency, Tribunal and Ms Maria Moreno from the Health Care Complaints Commission 08.07.2019 -

A80 Correspondence from Applicant’s mother to Agency 22.08.2019 -

A81 Letter from Northcott 07.11.2019 -

A82 Handwritten notes (assumed to be Mrs Klewer’s diary of seizures) Various -

A83 Applicant’s mother’s academic records Various -

A84 Applicant’s mother’s first aid certificate - -

A85 Applicant’s mother’s confirmation of employment Various -

A86 Correspondence from Applicant to Agency and Tribunal 11.11.2019 -

A87 NDIS Plan (16.12.2019 – 15.06.2020) -

A88 Photographs of Applicant - -

A89 Functional Neurological Symptom Disorder, MD Guidelines - -

A90 Functional Neurological Disorder (FND): A Patient’s Guide – Treatment of Dissociative Seizures/Attacks - -

A91 Dr Jon Stone, Treatment Advice for Dissociative Attacks (non-epileptic attacks) - -

A92 Mater Hospital Neuroscience Centre, FND Hope - -

A93 Epilepsy Action Group, Sudden Unexplained Death in Epilepsy – SUDEP - -

A94 W. Curt LaFrance, Jr et al, Psychiatric Comorbidities in Epilepsy - -

A95 Paul Gardiner, Occupational therapy for functional neurological disorders: A scoping review and agenda for research - -

A96 NDIS Operational Guidelines: Including Specific Types of Supports in Plans Operational Guideline – Sustaining informal supports - -

A97 NDIS Price Guide 2019-20 - -

A98 NDIS Support Catalogue 2019-20 - -

A99 NDIS Practice Guide – Epilepsy - -

A100 Report by Dr. Hyun Ah Hannah Choi, Psychiatrist 23.05.2020 -

A101 Report of Dr. Kalband, neurologist 24.11.2020 -

A102 Hospital and ambulance records (dated 28.07.2020 – 14.11.2020) Various -

A103 Report by Dr Cara Wong, Clinical Neuropsychologist 30.11.2020 -

A104 Letter by Jane Burford, Epilepsy Nurse Specialist, Epilepsy Action Australia 17.05.2021 -

A105 Revised summary report by Charles Lucas, Psychologist 22.05.2021 -

A106 Supplementary report by Charles Lucas, Psychologist 26.05.2021 -

A107 NDIS Plan (07.06.2021 – 07.06.2022) - -

Volume B – Summons Material

B1 Department of Human Services Various -

B2 NSW Ambulance Various -

B3 Coffs Harbour Health Clinic Various -

3 Seizure Action Plan for the Applicant 28.10.2021 A

4 Handwritten seizure diary notes (dated 8 July 2019 – 3 May 2021) Various A

5 Emergency nursing assessment 29.07.2020 A

6 Coffs Harbour Health Clinic records – discharge referral notes 29.07.2020 A

7 NSW Ambulance Paramedic-initiated referral form 27.03.2021 A

8 Email from Charles Lucas, psychologist, to Lucy Klewer 25.05.2021 A

ANNEXURE A

Date of Incident Description Reference to Exhibits

21 March 2017 Paramedics from NSW Ambulance noted that Ms Klewer had informed them that Mr Klewer had four (4) seizures and that, in the presence of paramedics, Mr Klewer had two (2) generalised tonic clonic seizures, the second of which completed after administering midazolam. Exhibit 2, B2 at 58 and B3 at 358

7 July 2019 Notes from the Coffs Harbour Health Clinic indicate that Mr Klewer had three (3) seizures, the first witnessed by Ms Klewer and the preceding two (2) witnessed by paramedics. Exhibit 2, B3 at pages 797, 801 and 812.

28 July 2020 NSW Ambulance reports indicate that Mr Klewer had three (3) seizures, the first two (2) witnessed by Ms Klewer and the third of which was witnessed by paramedics. Exhibit 6

15 August 2020 NSW Ambulance reports indicate that Mr Klewer had two (2) seizures, the first witnessed by Ms Klewer and the second of which witnessed by paramedics. It was noted that the second seizure ‘self-reverted’. Exhibit 2, A102

14 November 2020 Discharge Referral Notes from the Coffs Harbour Health Clinic indicate that Mr Klewer had a tonic clonic seizure in the emergency department, which lasted for approximately 40 seconds before self-terminating. Exhibit 2, A102.

Exh. #	Doc ID	Description of Exhibit	Date of Document	Party who submitted
1	Section 37 Documents filed on 23 August 2018
Part A – General Documents
T1	Application for Review of Decision	23.07.2018	R
T2	Internal Review Decision	23.07.2018	R
T3	Neurology Report, Dr Paul Spira (Consultant Neurologist)	12.10.2017	R
T4	Neurology Report, Dr Sanjeev Taneja (Consultant Neurologist)	28.11.2017	R
T5	Email, Applicant’s Mother to Respondent, attaching Report, Dr Ivan Mark Young (Ophthalmic Surgeon), dated 01.06.2016	05.03.2018	R
T6	Letter, Respondent to Applicant, access granted	12.03.2018	R
T7	Email, Applicant’s Mother to Respondent, attaching:	27.04.2018	R
	Declaration of NDIS Service Provider Suitability	01.05.2018	R
	NDIS Service Provider Application	27.04.2018	R
T8	NDIS Service Provider Participant Agreement	01.05.2018	R
T9	Email correspondence, between Applicant and Respondent, NDIS Price Guide	1.05.2018 – 03.05.2018	R
T10	Email, Applicant’s Mother to Respondent, NDIS Participant Statement and Goals	02.05.2018	R
T11	Extracts of Interactions Record	14.05.2018 – 10.08.2018	R
T12	Email, Respondent to Applicant’s Mother, Accessing Funding	25.05.2018	R
T13	Email, Orthomotion Advance Rehab Centre to Applicant’s Mother, attaching Service Agreement	02.07.2018	R
T14	Email, Respondent to Applicant’s Mother, attaching:	13.07.2018	R
	Psychology Report, Dr Charles Lucas (Consulting Psychologist)	04.07.2018	R
	Plan Review Request Form, completed by Applicant’s Mother	13.07.2018	R
T15	Email, Internal Communication, Confirmation of Review Request (duplicate attachments omitted)	18.07.2018	R
T16	Email, Respondent to Applicant’s Mother, regarding Application Process to be Appointed Plan Nominee	24.07.2018	R
T17	NDIA Agreement to be Appointed Plan Nominee for Applicant Form	24.07.2018	R
T18	Email, Respondent to Applicant’s Mother, Review Process Queries	27.07.2018	R
T19	Letter, Respondent to Applicant, confirmation of plan nominee appointment	10.08.2018	R
T20	NDIS Access Request – Supporting Evidence Form	-	R
Part B – Participant Plans
T21	NDIS Plan (31.05.2018 – 31.05.2019) – Original Decision	01.06.2018	R
T22	National Disability Insurance Scheme Act 2013 (Cth), s 44	-	R
T23	National Disability Insurance Scheme (Plan Management) Rules 2013 (Cth)	-	R
T24	National Disability Insurance Scheme – Operational Guidelines – Planning	Printed on 2.08.2018	R
2	Hearing Bundle filed on 20 July 2021
Volume A – Evidence
A1	Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon)	10.02.2010	-
A2	Letter from Miss Elizabeth Lewis (Neurosurgeon)	10.03.20210	-
A3	Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon)	21.04.2010	-
A4	Neurosurgical Report, Miss Elizabeth Lewis (Neurosurgeon)	13.12.2011	-
A5	Notes of Dr Miroslava Kon	31.01.2015	-
A6	Letter from Associate Professor Ernest Somerville (Neurologist)	16.06.2015	-
A7	Letter from Dr Syed Ali Raza, Tristar Medical Group – Coffs Harbour	24.08.2015	-
A8	Letter from Associate Professor Ernest Somerville (Neurologist)	07.09.2015	-
A9	Medical Certificates, Dr Tosan Ajuyah	01.02.2017	-
A10	Psychologist Report, Charles Lucas (Psychologist)	24.02.2017	-
A11	Medical Certificate, Dr Tosan Ajuyah	24.02.2017	-
A12	Letter from Cisco Schmetzer (Osteopath)	30.03.2017	-
A13	Quotation for Orthotics by Orthomotion	26.05.2017	-
A14	Letter from Costal Medical Clinics	15.08.2017	-
A15	Neurology Report, Dr Paul Spira (Consultant Neurologist)	12.10.2017	-
A16	Neurology Report, Dr Sanjeev Taneja (Consultant Neurologist)	28.11.2017	-
A17	Report by Dr Chandramouli Bharati, Radiologist	04.12.2017	-
A18	Reuber M and Brown RJ, Understanding Psychogenic Nonepileptic Seizures - Phenomenology, Semiology and the Integrative Cognitive Model, Seizure 44	2017	-
A19	Email, Applicant’s Mother to Respondent, attaching Report, Dr Ivan Mark Young (Ophthalmic Surgeon), dated 01.06.2016	05.03.2018	-
A20	Letter, Respondent to Applicant, access granted	12.03.2018	-
A21	Letter by Dr Sanjeev Taneja, Neurologist	18.04.2018	-
A22	Email, Applicant’s Mother to Respondent, attaching	27.04.2018	-
	Declaration of NDIS Service Provider Suitability	01.05.2018	-
	NDIS Service Provider Application	27.04.2018	-
A23	NDIS Service Provider Participant Agreement	01.05.2018	-
A24	Email correspondence, between Applicant and Respondent, NDIS Price Guide	1.05.2018 – 03.05.2018	-
A25	Email, Applicant’s Mother to Respondent, NDIS Participant Statement and Goals	02.05.2018	-
A26	Extracts of Interactions Record	14.05.2018 – 10.08.2018	-
A27	Email, Respondent to Applicant’s Mother, Accessing Funding	25.05.2018	-
A28	NDIS Plan (31.05.2018 – 31.05.2019) – original decision	01.06.2018	-
A29	Espay AJ et al, Current Concepts in Diagnosis and Treatment of Functional Neurological Disorders, JAMA Neurology	04.06.2018	-
A30	Email, Orthomotion Advance Rehab Centre to Applicant’s Mother, attaching Service Agreement	02.07.2018	-
A31	Email, Respondent to Applicant’s Mother, attaching:	13.07.2018	-
	Psychologist Report of Dr Charles Lucas (Consulting Psychologist)	04.07.2018	-
	Plan review request form completed by Applicant’s mother	13.07.2018	-
A32	Email, Internal Communication, Confirmation of Review Request	13.07.2018	-
A33	Application for review of decision	23.07.2018	-
A34	Internal review decision	23.07.2018	-
A35	Email, Respondent to Applicant’s Mother, regarding Application Process to be Appointed Plan Nominee	24.07.2018	-
A36	NDIA Agreement to be Appointed Plan Nominee for Applicant Form	24.07.2018	-
A37	Email, Respondent to Applicant’s Mother, Review Process Queries	24.07.2018	-
A38	Letter, Respondent to Applicant, confirmation of plan nominee appointment	10.08.2018	-
A39	NDIS Access Request – Supporting Evidence Form	-	-
A40	Letter by Harry Groom, Physiotherapist	30.08.2018	-
A41	Letter by Dr Andre Loiselle, Neurologist	19.09.2018	-
A42	Plan review request form by Applicant’s mother	04.10.2018	-
A43	Report of Gemma Evan, Occupational Therapist	08.10.2018	-
A44	Email from Applicant’s mother to Tribunal – Statement of Lived Experience	17/10/2018	-
A45	Statement of Lived Experience prepared by Applicant’s mothers	17.10.2018	-
A46	Email from Applicant’s mother to Tribunal and Bridget Lawler – further evidence	25.10.2018	-
A47	Briefing letter to Dr Peter Ashkar	01.11.2018	-
A48	Curriculum Vitae of Dr Peter Ashkar	-	-
A49	Curriculum Vitae of Gemma Evans	-	-
A50	Email chain between Tribunal, Respondent and Applicant’s mother regarding the Respondent’s request for independent assessment	07.11.2018	-
A51	Email of Applicant’s mother to Tribunal and Bridget Lawler enclosing plan nominee registration	15.11.2018	-
A52	Report of Dr Peter Ashkar, Neuropsychologist	14.01.2019	-
A53	Email from Applicant’s mother to Health Care Complaints Commission	15.01.2019	-
A54	Letter by Andre Loiselle	17.01.2019	-
A55	Letter from Health Care Complaints Commission to Dr Peter Ashkar	29.01.2019	-
A56	Email from the Respondent to Tribunal and Applicant’s mother regarding conciliation arrangements	11.02.2019	-
A57	Email from the Applicant’s mother to the Tribunal with complaint regarding assessment	11.02.2019	-
A58	Email from Applicant’s mother to Tribunal regarding conciliation arrangements	15.02.2019	-
A59	Report by Charles Lucas	17.02.2019	-
A60	Email from the Applicant’s mother to the Tribunal regarding further evidence	18.02.2019	-
A61	Email from the Tribunal to Applicant’s mother and Respondent advising Applicant can attend conciliation by telephone	27.02.2019	-
A62	Medical Certificate by Dr Mary Yan Paredes, General Practitioner	08.04.2019	-
A63	Letter from Health Care Complaints Commission to Dr Peter Ashkar – Decision	11.04.2019	-
A64	Email from the Applicant’s mother to the Tribunal with concern regarding independent assessment	17.04.2019	-
A65	Email from the Applicant’s mother to the Tribunal and Bridget Lawler attaching Orthomotion quote	23.04.2019	-
A66	Email from the Applicant’s mother to the Tribunal and Bridget Lawler regarding Orthomotion quote	08.05.2019	-
A67	Statement of live experience by the Applicant	08.05.2019	-
A68	Email from the Applicant’s mother to the Tribunal regarding the Applicant’s further evidence	09.05.2019	-
A69	Statement of live experience by the Applicant	09.05.2019	-
A70	NDIS Plan (03.06.2019 – 02.12.2018)	-
A71	Email from Applicant’s mother to the Tribunal – Report of Andre Loiselle	-	-
A72	Video-EEG Telemetry Report by Dr Ernest Somerville, Director of Comprehensive Epilepsy Services and Dr Rui Guan, Epilepsy Fellow	-	-
A73	Discharge Letter by Dr Ernest Somerville	-	-
A74	Record of Interactions (dated 13.12.2017 – 11.06.2019)	Various	-
A75	Correspondence from Applicant’s mother to Agency and Tribunal	03.07.2019	-
A76	Correspondence from Applicant’s mother to Agency and Tribunal	05.07.2019	-
A77	Correspondence from Applicant’s mother to Agency, Mr Lucas and Ms Maria Moreno from the Health Care Complaints Commission	06.07.2019	-
A78	Coffs Harbour Health Campus Discharge Referral Note	07.07.2019	-
A79	Correspondence from Applicant’s mother to Agency, Tribunal and Ms Maria Moreno from the Health Care Complaints Commission	08.07.2019	-
A80	Correspondence from Applicant’s mother to Agency	22.08.2019	-
A81	Letter from Northcott	07.11.2019	-
A82	Handwritten notes (assumed to be Mrs Klewer’s diary of seizures)	Various	-
A83	Applicant’s mother’s academic records	Various	-
A84	Applicant’s mother’s first aid certificate	-	-
A85	Applicant’s mother’s confirmation of employment	Various	-
A86	Correspondence from Applicant to Agency and Tribunal	11.11.2019	-
A87	NDIS Plan (16.12.2019 – 15.06.2020)	-
A88	Photographs of Applicant	-	-
A89	Functional Neurological Symptom Disorder, MD Guidelines	-	-
A90	Functional Neurological Disorder (FND): A Patient’s Guide – Treatment of Dissociative Seizures/Attacks	-	-
A91	Dr Jon Stone, Treatment Advice for Dissociative Attacks (non-epileptic attacks)	-	-
A92	Mater Hospital Neuroscience Centre, FND Hope	-	-
A93	Epilepsy Action Group, Sudden Unexplained Death in Epilepsy – SUDEP	-	-
A94	W. Curt LaFrance, Jr et al, Psychiatric Comorbidities in Epilepsy	-	-
A95	Paul Gardiner, Occupational therapy for functional neurological disorders: A scoping review and agenda for research	-	-
A96	NDIS Operational Guidelines: Including Specific Types of Supports in Plans Operational Guideline – Sustaining informal supports	-	-
A97	NDIS Price Guide 2019-20	-	-
A98	NDIS Support Catalogue 2019-20	-	-
A99	NDIS Practice Guide – Epilepsy	-	-
A100	Report by Dr. Hyun Ah Hannah Choi, Psychiatrist	23.05.2020	-
A101	Report of Dr. Kalband, neurologist	24.11.2020	-
A102	Hospital and ambulance records (dated 28.07.2020 – 14.11.2020)	Various	-
A103	Report by Dr Cara Wong, Clinical Neuropsychologist	30.11.2020	-
A104	Letter by Jane Burford, Epilepsy Nurse Specialist, Epilepsy Action Australia	17.05.2021	-
A105	Revised summary report by Charles Lucas, Psychologist	22.05.2021	-
A106	Supplementary report by Charles Lucas, Psychologist	26.05.2021	-
A107	NDIS Plan (07.06.2021 – 07.06.2022)	-	-
Volume B – Summons Material
B1	Department of Human Services	Various	-
B2	NSW Ambulance	Various	-
B3	Coffs Harbour Health Clinic	Various	-
3	Seizure Action Plan for the Applicant	28.10.2021	A
4	Handwritten seizure diary notes (dated 8 July 2019 – 3 May 2021)	Various	A
5	Emergency nursing assessment	29.07.2020	A
6	Coffs Harbour Health Clinic records – discharge referral notes	29.07.2020	A
7	NSW Ambulance Paramedic-initiated referral form	27.03.2021	A
8	Email from Charles Lucas, psychologist, to Lucy Klewer	25.05.2021	A

Date of Incident	Description	Reference to Exhibits
21 March 2017	Paramedics from NSW Ambulance noted that Ms Klewer had informed them that Mr Klewer had four (4) seizures and that, in the presence of paramedics, Mr Klewer had two (2) generalised tonic clonic seizures, the second of which completed after administering midazolam.	Exhibit 2, B2 at 58 and B3 at 358
7 July 2019	Notes from the Coffs Harbour Health Clinic indicate that Mr Klewer had three (3) seizures, the first witnessed by Ms Klewer and the preceding two (2) witnessed by paramedics.	Exhibit 2, B3 at pages 797, 801 and 812.
28 July 2020	NSW Ambulance reports indicate that Mr Klewer had three (3) seizures, the first two (2) witnessed by Ms Klewer and the third of which was witnessed by paramedics.	Exhibit 6
15 August 2020	NSW Ambulance reports indicate that Mr Klewer had two (2) seizures, the first witnessed by Ms Klewer and the second of which witnessed by paramedics. It was noted that the second seizure ‘self-reverted’.	Exhibit 2, A102
14 November 2020	Discharge Referral Notes from the Coffs Harbour Health Clinic indicate that Mr Klewer had a tonic clonic seizure in the emergency department, which lasted for approximately 40 seconds before self-terminating.	Exhibit 2, A102.