WNLL and National Disability Insurance Agency
[2024] AATA 3374
•23 September 2024
WNLL and National Disability Insurance Agency [2024] AATA 3374 (23 September 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2022/4658
Re:WNLL
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Senior Member K Buxton
Date:23 September 2024
Place:Brisbane
The decision under review is set aside and the decision is remitted to the Respondent for reconsideration in accordance with a direction that the Applicant’s approved statement of participant supports specifies, from the date of this decision:
a)funding for the support of ten hours per day for a High Intensity Support Worker;
b)that the reasonable and necessary supports otherwise specified be replicated until the reassessment date;
c)that the reassessment date is six months from the date on which funding is provided for the additional supports specified in this decision.
...................................[SGD]....................................
Senior Member K Buxton
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – whether Supports are reasonable and necessary – Registered Nurse funding – passenger lift - High Intensity Support Worker funding – decision under review set aside
Legislation
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)Cases
Child Support Registrar v BKCZ [2023] FCA 1109
Drake v Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409
Esber v The Commonwealth (1992) 174 CLR 430
Le v Comcare [2014] AATA 291
McGarrigle v National Disability Insurance Agency [2017] FCA 308Pavlakis v National Disability Insurance Agency [2023] AATA 2485
REASONS FOR DECISION
Senior Member K Buxton
23 September 2024
INTRODUCTION
The Applicant is a 28-year-old woman who, with the assistance of her mother, has applied to the Tribunal, pursuant to section 103 of the National Disability Insurance Scheme Act 2013 (“the NDIS Act”), for review of a decision of the National Disability Insurance Agency (“the NDIA”) dated 3 June 2022. In broad terms, the decision concerned the NDIA’s refusal to fund various supports.
The Applicant and her mother have lived in their home in regional New South Wales since it was purchased by her mother in late 2015. The Applicant sought funding for various supports including 36 hours per day of care and support from Registered Nurses (RN supports). The Respondent now funds 24 hours per day in RN supports, together with additional support worker funding, and contends that this aspect of the statement of participant supports (SPS) provides the Applicant with reasonable and necessary supports. The Applicant also sought funding for modifications to provide for the installation of a passenger lift to be installed within the existing footprint of her mother’s home to connect the two levels of that home. The Applicant has stated through her mother, after some evidence about home modifications was adduced before the Tribunal, that she no longer wishes to pursue funding for the installation of a lift in this proceeding, and the parties have made submissions about what, if any, level of home modification should be funded.
Procedural History
On 6 January 2022 the NDIA approved a SPS for the Applicant under subsection 33(2) of the NDIS Act for a 12-month period. The Applicant sought internal review of that decision and, on 3 June 2022, the Respondent’s delegate made a decision varying the approval of the SPS such that it specified total funding of $724,171.40. The effect of this decision was to allow for 186 hours per week of high intensity assistance with self-care, rather than the requested 252 hours per week of Registered Nurse (RN) care, as reasonable and necessary supports pursuant to subsection 34(1) of the NDIS Act and not to allow funding for the passenger lift or for various other supports. It was from this decision that the Applicant applied to the Tribunal for review.
In December 2023 the Tribunal remitted the decision to the Respondent for reconsideration pursuant to section 42D of the Administrative Appeals Tribunal Act 1975 (Cth) (“the AAT Act”). As a result of the remittal, on 27 May 2023, the total funding specified in the SPS was increased to $392,524.34 for a 6-month period from that date (which is $785,048.68 when annualised). The re-made decision did not include funding for the RN supports, despite the Respondent having indicated prior to that date that it considered 24 hours a day RN support to be reasonable and necessary, nor did it provide for the alternative support of additional funding for a High Intensity Support Worker (HISW) which the Respondent had indicated was also reasonable and necessary. The re-made decision did not include funding for the passenger lift either. The Applicant decided to proceed with the review.
A hearing took place in two tranches, the first on 3, 4 and 5 April 2024 and the second on 26, 27 and 28 June 2024 and 9 July 2024. The commencement of the second tranche of the hearing was delayed at the request of the Applicant whilst she obtained legal representation. Between the first and second tranches, the Tribunal remitted the decision to the Respondent for reconsideration pursuant to section 42D of the AAT Act as the Respondent indicated that it had accepted that changes should be made to reflect increases in RN support. As a result of the remittal, on 19 June 2024, the total funding specified in the SPS was increased to $616,374.36 with a reassessment date 6-months from that date (which is $1,232,748.42 when annualised). The re-made decision included 24 hours a day RN support, but not the 36 hours per day requested by the Applicant and did not include increased funding for the passenger lift or for any HISW hours.
By operation of section 42D of the AAT Act, the reconsidered decision of 19 June 2024 became the reviewable decision. However, because section 48 of the NDIS Act has not been engaged, and for the reasons set out in the decision of Pavlakis and National Disability Insurance Agency,[1] that decision cannot operate as a “new” plan. When exercising powers on remittal, the delegate can only make a decision that is open to the Tribunal on review, and that review is limited to a reconsideration of the approved SPS in an existing plan. This approach is consistent with the Tribunal’s obligation to stand in the shoes of the CEO’s delegate and to re-exercise the functions of the delegate subject to the same statutory constraints as the delegate.[2] It follows that in reviewing the reviewable decision dated 19 June 2024, insofar as it reconsiders the SPS, all supports which could have been considered by the delegate in the original decision, made in January 2022, can be reconsidered in this review application.
[1] [2023] AATA 2485 at [14] – [39].
[2] Esber v The Commonwealth (1992) 174 CLR 430 at 440; Le v Comcare [2014] AATA 291 at [43]; Drake v Minister for Immigration and Ethnic Affairs (1979) 46 FLR 409 at 419; Child Support Registrar v BKCZ [2023] FCA 1109 at [29] – [34].
Prior to the hearing, the Respondent lodged with the Tribunal a joint tender bundle containing all relevant information provided by both parties in this case.[3] In reaching its conclusion, the Tribunal has considered the evidence taken during the hearing together with the evidence set out in the bundle (which included the documents provided by the Respondent under subsection 37(1) of the AAT Act) and other documentary exhibits tendered during the hearing.
[3] Exhibit 1, Joint Hearing Bundle (‘HB’).
The issues for determination by the Tribunal are whether sufficient funding is to be included in the Applicant’s SPS to allow for the RN support, any home modifications and any other supports.
For the reasons set out below, the Tribunal is satisfied that, in addition to the 24 hours a day of RN funding, funding should be specified for a HISW, for ten hours per day, to attend and assist the RN to support the Applicant during her waking hours. The Tribunal has not reached a level of satisfaction that it is reasonable and necessary that this additional support be provided by an RN, nor is it satisfied that 12 hours of 2:1 support is required when the Applicant is only routinely awake and out of bed from about 6pm to about 3am. The Tribunal has not reached a level of satisfaction that any additional supports are reasonable and necessary.
The Applicant is an adult capable of exercising choice and agency independently of her mother and the NDIS is designed to support that independence. However, the Applicant presents as completely dependent upon her mother, who exercises control over all aspects of her care and, in particular, how her funded supports are delivered and how she accesses medical care. The Applicant’s mother approached the Applicant’s care and living arrangements mother as non-negotiable and the Applicant’s preferences and choices were not always apparent. It is difficult to see how this approach aligns with stated goals of the Applicant in her participant’s plan and the relevant objects and principles of the NDIS Act that are set out below. Further, although current arrangements may also have led to a level of nursing care that is reasonable to be funded by the NDIS in the short term, the high cost and potentially negative impacts upon the Applicant indicate that this may not be a sustainable long-term protocol.
The re-assessment date in the decision under review is 18 December 2024. The Applicant submitted that the reassessment date should be specified between three and five years into the future and the Respondent submitted that a reassessment in 12 months was preferable.[4] However, it seems sensible to retain a re-assessment date that is not too far into the future and would allow the parties to take the steps necessary to investigate alternatives to the uninterrupted 24 hour per day care of the Applicant in her mother’s home by an RN and to consider home modifications for a more accessible bathroom in the upstairs part of the home. A period of six months will also allow the Applicant to explore the recommendations that have been made by a variety of medical and allied health professionals that may assist the Applicant to regain a locus of control over her symptoms and to assist her with seizure management and mobility. This approach may, in turn, impact the level of ongoing personal care supports that are reasonable and necessary when the Applicant is appropriately engaging with those recommendations.
[4] Applicant’s closing submissions dated 19 August 2024 [33]; Respondent’s closing submissions dated 27 August 2024 [260].
Modification of the bathroom currently used by the Applicant was not explored before the Tribunal because the Applicant, through her mother, had expressed the view that the installation of a passenger lift in the home, in order to access the already accessible downstairs bathroom, was the only acceptable outcome and the only home modification support she wished to be considered. This support had been pursued for over two years, and it was only after concessions were made in the hearing during the cross-examination of Ms McCann, an occupational therapist (OT) who had prepared a report for the purpose of the Applicant’s request for funding, that the Applicant’s mother informed the Tribunal that the Applicant no longer wished to pursue the funding of a lift “in this review”. The Tribunal took this qualification to mean that the Applicant would prefer to pursue this in a separate request to the Respondent at some later date, and perhaps when additional or different evidence was available. Given that so much of the hearing was dedicated to evidence relating to the installation of a passenger lift before the indication that the support was not being pursued, and as the Tribunal is required to conduct a full merits review, the Tribunal has made some observations below about that evidence. The Tribunal has not reached a level of satisfaction in this review that it is a reasonable and necessary support, and notes that the Tribunal’s observations will not bind the consideration by any future decision-maker, on different evidence, of a future request for a passenger lift as a reasonable and necessary support.
Submissions were made by the Applicant’s legal representatives prior to the resumption of the hearing in June that the issue of bathroom modifications could be explored as part of this hearing. However, the oral evidence of the Applicant, her expert OT and much of the evidence of her mother was by this time complete and the Tribunal determined that it would be inconsistent with the objects in section 2A of the AAT Act to further delay proceedings to allow for this additional issue to be considered, effectively at first instance in this hearing, in a way that would require substantial re-hearing of the oral evidence of those witnesses. It is open to the Applicant to raise the issue of bathroom modifications at the time of the next reassessment. The Respondent indicated during the hearing that it was open to consideration of this issue and the Tribunal notes that the reconsidered decision made on 19 June 2024 includes funding for a report on this issue.
The Applicant submitted after the hearing that the sum of $892 currently specified in the Applicant’s SPS was “not sufficient to properly scope” suitable home modifications. The Applicant did not point to any evidence to support this assertion, or that might assist the Tribunal in arriving at a figure that was “sufficient”. The Tribunal further notes that the Applicants SPS also specifies funds that can be used flexibly for such a report, including OT funding in the sum of $2,909.85 notionally allocated to “assessments/reports”. The Tribunal has not further considered this submission as it is satisfied that the current SPS makes reasonable and necessary provision to explore bathroom modifications.
A funding model that had not received careful consideration by the Applicant prior to hearing was the prospect of the Applicant sharing the delivery of her substantial support needs with other NDIS participants in shared specialist disability accommodation, perhaps with people of her own age, or in supported independent living. Achieving a level of independence from her mother may assist the Applicant to work on building her capacity by being in a position to accept the advice of medical and allied health professionals as to how she might learn to live with her seizures, including by improving her general health, and may also assist her to work towards her goals of independence and community engagement. Of course, such an option is only relevant if it aligns with the Applicant’s exercise of choice and control, and this is something that only she can decide. If this option is to be pursued, bathroom modifications to the Applicant’s mother’s home may not be required.
The Tribunal considers that these issues can be considered by the parties prior to the reassessment date, or at a later stage if that is more appropriate. It will be a matter for any subsequent decision-maker to consider these issues afresh at the relevant time having regard to the evidence then available.
RELEVANT LEGISLATION
The NDIS statutory framework
The objects and principles of the NDIS Act are set out in Part 2 of the NDIS Act. Subsection 3(1) of the NDIS Act relevantly includes:
(1) The objects of this Act are to:
…
(c)support the independence and social and economic participation of people with disability; and
(d)provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme; and
(e)enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and
(f)facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability; and
(g)promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community;
…
Section 4 of the NDIS Act sets out the General Principles guiding actions under the NDIS Act and they relevantly include:
(1)People with disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development.
(2)People with disability should be supported to participate in and contribute to social and economic life to the extent of their ability.
(3)People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
(4)People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports.
(5)People with disability should be supported to receive reasonable and necessary supports, including early intervention supports.
…
(8)People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives.
…
(11)Reasonable and necessary supports for people with disability should:
(a)support people with disability to pursue their goals and maximise their independence; and
(b)support people with disability to live independently and to be included in the community as fully participating citizens; and
(c)develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.
…
(15)In exercising their right to choice and control, people with disability require access to a diverse and sustainable market for disability supports in which innovation, quality, continuous improvement, contemporary best practice and effectiveness in the provision of those supports is promoted.
(16)Positive personal and social development of people with disability … is to be promoted.
Section 17A of the NDIS Act contains principles relating to the participation of people with disabilities including:
(1)People with disability are assumed, so far as is reasonable in the circumstances, to have capacity to determine their own best interests and make decisions that affect their own lives.
…
(3)The National Disability Insurance Scheme is to:
(a)respect the interests of people with disability in exercising choice and control about matters that affect them; and
(b)enable people with disability to make decisions that will affect their lives; and
(c)support people with disability to participate in, and contribute to, social and economic life.
The functions of the Agency are set out in section 118 of the NDIS Act and include the following relevant functions:
(1)The Agency has the following functions:
(a)to deliver the National Disability Insurance Scheme so as to:
(i)support the independence, and social and economic participation, of people with disability; and
(ii)enable people with disability to exercise choice and control in their pursuit of their goals and the planning and delivery of their supports; and
(iii)ensure that the decisions and preferences of people with disability are respected and given appropriate priority; and
(iv)promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and inclusion in the community;
…
Reasonable and necessary supports in participant’s plans
Chapter Three of the NDIS Act deals with individual plans under which reasonable and necessary supports will be funded for participants in the scheme. Section 31 of the NDIS Act sets out the principles relating to the preparation, review and replacement of a participant’s plan. These principles are generally reflective of the General Principles set out in section 4 and expressly include, amongst other things, that these processes should:
(a)Be individualised;
(b)Be directed by the participant; and
…
(j)Facilitate tailored and flexible responses to the individual goals and needs of the participant.
Section 33 of the NDIS Act deals with the contents of a participant’s plan. Subsection (1) sets out the requirements with respect to the participant’s statement of goals and aspirations, including that they are prepared by the participant. Subsection (2) applies to the statement of participant supports which must also be included in the plan, and which must be prepared with the participant and approved by the CEO. Subparagraph 33(2)(b) provides:
(2)A participant’s plan must include a statement (the statement of participant supports), prepared with the participant and approved by the CEO, that specifies:
…
(b)the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme; and
…
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 statement of participant supports are as follows:
(5)In deciding whether or not to approve a statement of participant supports under subsection (2), the CEO must:
(a)have regard to the participant’s statement of goals and aspirations; and
(b)have regard to relevant assessments conducted in relation to the participant; and
(c)be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d)apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e)have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f)have regard to the operation and effectiveness of any previous plans of the participant.
Subsection 34(1) of the NDIS Act provides, with respect to reasonable and necessary supports, as follows:
(1)For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
(b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
(c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
(f)the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i)as part of a universal service obligation; or
(ii)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
The term “support” is not given a meaning in the NDIS Act. A “support” is defined in section 9 of the NDIS Act as including “general supports”, being those defined in subsection 13(2) as the kind of supports provided by the Agency itself. However, the term “support” and the phrase “reasonable and necessary” are not further defined in the NDIS Act. In McGarrigle v National Disability Insurance Agency,[5] Mortimer J (as the Chief Justice then was) observed, with respect to those words:
[91] Whether a support is “reasonable” requires a different assessment to whether a support is “necessary”. Again, it is not necessary in the context of this proceeding to be definitive about the nature and extent of the meaning of the phrase, or its components. It is enough to observe that using the concept of necessity would appear to tie one aspect of the CEO’s assessment to an evaluation of the kinds of factors set out in s 34(1)(a) and (b) and (d). The word “reasonable” would appear to be directed at factors such as those set out in s 34(1)(c) and (f). That is not to say the meaning of each word is exhausted by the factors set out in s 34(1): rather, it is to illustrate the different work that each concept does as an adjective in the phrase “reasonable and necessary supports”.
[5] [2017] FCA 308 at [91],
The National Disability Insurance Scheme (Supports for Participants) Rules 2013 (“the Rules”) made pursuant to subsection 35(1) of the NDIS Act provides further guidance with respect to the assessment of reasonable and necessary supports that will be funded. Pursuant to section 209 of the NDIS Act, the Rules are a legislative instrument and are therefore binding to the Tribunal. In this case the relevant rules include:
Value for money
3.1In deciding whether the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support, the CEO is to consider the following matters:
(a)whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b)whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long‑term benefit to, the participant;
(c)whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d)for supports that involve the provision of equipment or modifications:
(i)the comparative cost of purchasing or leasing the equipment or modifications; and
(ii)whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e)whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f)whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
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Effective and beneficial and current good practice
3.2 In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:
(a) published and refereed literature and any consensus of expert opinion;
(b) the lived experience of the participant or their carers; or
(c) anything the Agency has learnt through delivery of the NDIS.
3.3In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary, seek expert opinion.
General criteria for supports
5.1A support will not be provided or funded under the NDIS if:
(a)it is likely to cause harm to the participant or pose a risk to others; or
(b)it is not related to the participant’s disability; or
(c)it duplicates other supports delivered under alternative funding through the NDIS; or
(d)it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.
5.2The day-to-day living costs referred to in paragraph 5.1(d) do not include the following (which may be funded under the NDIS if they relate to reasonable and necessary supports):
(a)additional living costs that are incurred by a participant solely and directly as a result of their disability support needs;
(b)costs that are ancillary to another support that is funded or provided under the participant’s plan, and which the participant would not otherwise incur.
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7.4The NDIS will be responsible for supports related to a person’s ongoing functional impairment and that enable the person to undertake activities of daily living, including maintenance supports delivered or supervised by clinically trained or qualified health practitioners where these are directly related to a functional impairment and integrally linked to the care and support a person requires to live in the community and participate in education and employment.
7.5 The NDIS will not be responsible for:
(a) the diagnosis and clinical treatment of health conditions, including ongoing or chronic health conditions; or
(b) other activities that aim to improve the health status of Australians, including general practitioner services, medical specialist services, dental care, nursing, allied health services (including acute and post-acute services), preventive health, care in public and private hospitals and pharmaceuticals or other universal entitlements; or
(c) funding time-limited, goal-oriented services and therapies:
(i) where the predominant purpose is treatment directly related to the person’s health status; or
(ii) provided after a recent medical or surgical event, with the aim of improving the person’s functional status, including rehabilitation or post-acute care; or
(d) palliative care.
EVIDENCE
The documentary evidence comprised the hearing bundle lodged by the Respondent on 27 March 2024 and several additional documents tendered and marked as exhibits during the hearing.
The Applicant’s current participant plan lists the following goals:
Short-term Goals:
I would like to build my independence.
I would like support to access the community and pursue my interests.
Medium or long-term goals:
I would like ongoing support from allied health professionals to improve my mental health and physical health.
The supports funded in the Applicant’s SPS relate, in particular, to her disabilities arising from functional neurological disorder (FND), a symptom of which is frequent psychogenic non-epileptic seizures (PNES), and from post-traumatic stress disorder (PTSD). Oral evidence was given during the hearing by the Applicant and her mother, together with a number of medical, nursing and allied health practitioners, which related to the nature of reasonable and necessary supports for the Applicant.
The most significant of the Applicant’s funded supports, in terms of cost, is her 24 hour a day nursing care. Both parties accepted that it is reasonable and necessary for an RN is to be funded 24 hours a day. This is consistent with the evidence before the Tribunal in relation to the Applicant’s current needs. Both parties also accepted that it was reasonable and necessary for additional personal support to be provided during the times when the Applicant is awake and out of bed. However, the Tribunal is to determine whether the additional personal care should be funded at the hourly rate for an RN, or at a lower hourly rate allowing for a HISW to provide that care, and for how many hours a day the additional care is to be funded.
Some context is helpful to understand the nature of the evidence before the Tribunal and the issues in this review. It is accepted by the parties that the Applicant lives in a two-storey home situated on a large parcel of land in regional New South Wales. The home is owned by her mother and they live there together and keep horses and other animals, although the Applicant has not ventured outside to care for the animals for many months. The upstairs layout of the house, accessed from the street via the long driveway, includes a master bedroom with walk-in-wardrobe and ensuite bathroom, located at one end of a long corridor, with three further bedrooms, a main bathroom and a laundry to one side of that corridor and a double garage to the other. At the other end of the home there is an open-plan kitchen, living and dining space, a powder room and a separate study. Down the stairs, which are arranged through a central void open to a foyer below, are two large rooms, one of which has an accessible shower room attached, together with a nook that could accommodate a washing machine.
Currently, the Applicant’s mother sleeps in the master bedroom and the Applicant sleeps in one of the upstairs bedrooms located next to the main bathroom. Neither the main bathroom nor the ensuite bathroom are modified in a way that is accessible to the Applicant and funds are available in the Applicant’s SPS for further investigation into how best to modify the home so that the Applicant can access a suitable bathroom on this level and for reasonable and necessary modifications to then be funded. Various proposals have been made for the modification of the main bathroom, including by incorporating part of an adjacent bedroom. These have not been put into effect because each has been rejected by the Applicant’s mother, who would not accept any outcome other than the downstairs area, including the bathroom being made accessible from upstairs via a lift. No evidence was available to the Tribunal that considered, for example, modification of the bathroom ensuited to the master bedroom so that the Applicant could access this space. During the hearing the Applicant’s mother rejected this idea as this was “her space” and that this would not be a “value adding proposition”. The effect of the Applicant’s evidence was that she wished a lift to be installed, although she accepted she was not well enough to sleep downstairs at the moment. The effect of the evidence of the Applicant’s mother was that the only acceptable home modification was the installation of the passenger lift so that the Applicant could access the bathroom downstairs and, potentially, also sleep there. This shaped the evidence available to the Tribunal about home modifications and supports more generally, and ultimately rendered much of the hearing time dedicated to evidence about the lift of no assistance to the Tribunal after the support was later abandoned.
The evidence given during the hearing, which is summarised below, was also shaped and dominated by particular details about the Applicant’s PNES and how these had been recorded. There was disagreement between the parties about the accuracy of a seizure diary and claims by the Applicant’s mother and employed RNs about the frequency of the Applicant’s seizures. The Respondent suggested that the Applicant, her mother and the RNs together decided to exaggerate the number of seizures and evidence about them to advance the Applicant’s case. Unsurprisingly, each witness rejected that suggestion.
Despite this focus on the number of seizures and the records of these seizures, and the sustained cross-examination of the Applicant’s nurses, the number of seizures ultimately had only a marginal impact on the nature of the care supports to be funded. Whilst some of the expert witnesses accepted that they had been given a different impression about the frequency of seizures and, more broadly, the seriousness of the Applicant’s condition, these witnesses did not change the recommendations about the supports that were reasonable and necessary that related to seizure-related care. The only question before the Tribunal in relation to care providers for the Applicant is whether her second carer during waking hours should be an RN or a HISW and the answer to this question does not depend on number of seizures, or whether they have been accurately recorded, but on the qualifications and training necessary for a second carer when it is accepted that the first carer is to be an appropriately qualified and experienced RN.
As can been seen from the more detailed summary below, Consultant Neurologist Dr Lehn explained quite simply that once an FND patient has drop attacks or other seizures which are unpredictable, the appropriate care regime is not significantly affected by whether the patient suffers 12 seizures a day or a couple of seizures a week. It is the uncertainty of when they will come that leads to the need for appropriate care. There is, however, a real question about what appropriate care should look like, and how this impacts the supports to be funded for the Applicant.
This matter has been before the Tribunal for over two years. During this time the RNs and the Applicant’s mother appear to have been entirely focussed on demonstrating that “line-of-sight” supervision of the Applicant is necessary so that any sign of potential seizure activity in the Applicant is managed by carers. As can be seen from the summary of the medical evidence below, the assertion that the Applicant required “line-of-sight” supervision is not supported by any medical or allied health specialist. It is not clear where this term comes from. The line-of-sight approach appears to have been introduced to the RNs at the insistence of the Applicant’s mother, rather than at the recommendation of any medical or allied health expert.
Dr Lehn opined that this type of laser-focus on the Applicant’s physical symptoms by multiple care givers is likely to have reduced the Applicant’s locus of control and self-determination and this, in turn, may continue to negatively impact her FND symptoms. Insistence on this model of care also appears to have been prioritised over taking steps towards supporting other aspects of the Applicant’s wellbeing and addressing her physical or mental health in accordance with various recommendations by health care professionals. These have included supporting the Applicant to increase movement and exercise, arranging for her to consult with a neurologist, arranging treatment and retraining through engagement with a psychologist and exercise physiologist and, potentially, consulting with a multi-disciplinary team specialising in FND. The RNs have not been asked to assist with any aspect of the Applicant’s physical deconditioning. The Applicant’s mother, who has taken on the responsibility of making medical appointments for the Applicant, has not facilitated the Applicant in accessing the recommended care to address her symptoms.
Dr Lehn noted that family members of FND patients, and even their professional carers, can find FND symptoms, including the care of PNES, confronting. The Applicant’s mother repeatedly stated during her evidence that the Applicant was going to die. Such concerns provide an explanation for the diversion by the Applicant’s team of formal and informal supports away from facilitating her functional capacity building and towards the recreation of a hospital-like environment at home where they await a seizure so that it can be managed. However, the NDIS will only fund supports that are effective and beneficial, which meet an Applicant’s goals, and which relate to the Applicant’s disabilities. A nursing regime that is not consistent with these aspects of the legislative scheme cannot be funded. Dr Lehn noted that PNES “can look very, very scary but it’s important to understand the event itself is not harmful to the brain unlike epileptic seizures … it’s more like the brain’s way of trying to protect itself rather than causing more damage”.[6] He considered that it is possible to learn to live with and to better manage these types of seizures. The Tribunal must determine supports that are reasonable and necessary for the Applicant in her current circumstances, and the Tribunal has done so based on a short to medium term view of her needs, but the current care regime may not continue to meet the requirements of the Act if the Applicant continues to choose to ignore medical advice that may assist her to gain functional capacity as her need may begin to depart from those that are related entirely to her disability.
[6] Transcript 28 June 2024, p. 105, lines 7-14.
The Applicant
During the hearing, the Applicant gave evidence via a Microsoft teams link. She was in a reclined position in a chair and the Tribunal adjourned shortly after the beginning of the hearing to accommodate the Applicant as she was having a seizure. The Applicant indicated after the seizure that she was able to, and wished to, continue with the hearing. She presented as an articulate and engaged young woman who has become accustomed to relying on others, and particularly her mother, to support her because of her health concerns. The Applicant was diagnosed with FND in 2017 and became a participant in the NDIS in 2019. The Applicant stated that she also lives with bipolar II, chronic fatigue and OCD and was accepted as a participant in the NDIS as a result of her disabilities.
The Applicant provided some background and context to her life as a young adult and the development of her disability. She completed year 12 in 2014 and, until June 2016, studied an Advanced Diploma at ACTT Surry Hills, attending in person as a musical theatre student and performer. Her mother purchased their current home and moved in December 2015. The Applicant commuted from there to complete the Diploma. After that she was not employed in the theatre and performing arts but was going to auditions with her agency and seeking work. She attended a handful of auditions at that time. She was aged 19 years when they moved in and turned 20 in March 2016. Prior to moving she had some casual jobs and has been in receipt of the disability support pension for some time but could not recall from when. The Applicant has a piano, guitars and a ukulele, digeridoo, and bongo drums plus a microphone system, all located downstairs, that she used when they first moved to the home. She now accepts that her FND symptoms would need to improve before she could use any of her instruments or sit safely at the piano.
Initially the Applicant planned to live downstairs with her fiancé. When she first moved in her bedroom was in the room downstairs with the kitchenette and her fiancé did move in too. When that relationship ended it was decided, “quite a while ago,” that the Applicant would reside upstairs. By June 2020 the Applicant had accepted that she was no longer living with her partner downstairs and had no intention of moving back downstairs and, at that time, the request for a lift was no longer pursued. It has now been “some years” since the Applicant walked to the downstairs part of her home.
The Applicant stated that she would not presently be able to sleep downstairs because of her health but that she wished “in time [to] sleep downstairs if my health permits”. She also stated that, if she were to receive the supports she needed and a lift were installed, she wished to sleep downstairs and live independently of her mother, in that her mother would live upstairs and the Applicant would live downstairs.
She explained the layout of the house and location of her bedroom and nearby bathroom that she uses for showering, teeth brushing etc. The other bathroom in the house is downstairs and she can no longer access it because it is only accessible via a staircase which she can no longer use. At the bottom of the stairs there is a stone foyer to the right of which there is a large room that could be a bedroom or living space, and to the left another room that is more likely to be a bedroom, and also a corridor, nook for a washing machine and bathroom attached to the room on the left. The downstairs bathroom is open plan and suitable for her disability but she cannot presently access it.
In the main bathroom upstairs, there is a small glass screened shower. The Applicant requires assistance to access this shower and has only showered three or four times in the last month as she finds the process exhausting. She described the physical build up as “like working up to a marathon” and stated that, afterwards, she will have a seizure because of the physical exhaustion. She is not able to use a shower chair in the space. After a shower she needs assistance to get out. She will dry herself and get changed with assistance. The Applicant’s mother will brush her hair. The Applicant will be shaky and can barely stand and need assistance due to exhaustion.
The Applicant has adopted a nocturnal pattern of sleeping during the daylight hours and wakefulness during the night. She awakes and rises from bed at about 6 or 6.30pm and sometimes later and retires to her bed at about 3am. The Applicant explained that this pattern is better to manage her symptoms of PTSD. She is attended by at least one RN during her waking hours. The Applicant stated that her mother handles the timetabling for the nurses’ roster, but she is able to recall her own medication needs. She requires medications during the day in different groupings at 10am, 2pm and 6.30pm, then at 10pm and 2am and medication with her evening meal.
On an average day the Applicant will wake at 6.30pm, take her medication (Nexium) and be assisted from the bedroom to her chair in the lounge room. She will remain sitting in her chair and get up only to go to bathroom. She will otherwise stay in her chair whilst playing on devices, watching TV and playing with her support animals. If she experiences a seizure or is tired, she will be transferred to the couch.
The Applicant stated that everything around her space is set up intentionally. Candles with scents, aromatherapy, crystals, lighting and a heater with light that gives a fake fire effect are all used as calming techniques to manage her anxiety and seizure activity. The TV and technology are used to keep her brain active. Her bird next to her in his cage and her dog is with her to provide comfort and stimulation. The Applicant stated that the reason for these measures is that if the Applicant feels any form of stress she goes into seizure. She also stated that she has extreme anxiety which is detrimental to her health.
The Applicant gave evidence about the nature and frequency of her seizures. She stated that sometimes they occur with no or very little notice and are painful and uncomfortable. Anything could trigger a seizure, including movement, pain, light, flashing images or distressing images, heat or cold. She stated that the seizures were “life threatening” and were distressing for everyone involved. The Applicant stated that she can have up to 12 seizures a day and stated that they were “always dangerous to some degree”.
It has been years since the Applicant has been into the yard or paddock. The Applicant last left the property when she saw her General Practitioner (GP) in January 2024. The Applicant asserted that she was unable to leave the house for other than essential purposes such as medical specialists. She explained that she was immunocompromised and cannot risk COVID or other infections. Outside her nursing team she has only rare contact with people other than her mother, whether by telephone or through social media. She stated that she does not have friends and has not for some time. The Applicant stated that she does have a degree of social anxiety in any event (although she did not recall having report to Dr Lehn that her OCD caused her to have a fear of germs and denied being a germaphobe). She stated that her social limitations were a “scenario-based thing, like in large crowds”. The Applicant has now let go of all of her friends, particularly after relocation and after COVID, but denied that this was disability related. She accepted she would be able to text and chat online with people in a moderated setting.
The Applicant described a day in October 2023 when she left home to attend a musical performance at a nearby RSL Club. This seems to have been a rare day when the Applicant left her home to undertake community engagement and participate in an enjoyable activity consistent with her stated goals. She accessed the premises in her wheelchair. She recalled that she met her musical idols Marina Prior and David Hobson. She also recalled that on the drive home she was sick in someone’s car and was embarrassed, describing this as a sour end to a positive experience. The Applicant accepted that she was out of her home for a period of five hours with her mother and RN, Ms Bonnie Nelson.[7] She also accepted that she expressed happiness in relation to the outing the following day.[8]
[7] HB, p. 667.
[8] HB, p. 668.
It is not clear on the available evidence how the Applicant managed her anxiety or her concerns about her immunocompromised state during that excursion. Further, given that these issues did not prevent her community participation on that day, it is also not clear why the Applicant has not been on other outings in the community to support her to pursue her interests.
After her diagnosis by Dr Herd diagnosed in 2017 the Applicant could not recall being in the regular care of a neurologist.[9] Dr Anna Schultz was consulted by the Applicant as a treating neurologist but the Applicant recalled seeing her only once. The Applicant recalled a telehealth consultation with her GP in April 2022 when it was recommended that she needed to see a neurologist but she could not recall whether the appointment was ever made.[10] The Applicant could not recall seeing Dr Sturm despite a referral made by her GP, at the suggestion of her Psychiatrist, on 21 February 2023.[11] The Applicant’s evidence was that she relied on her mother to make such appointments.
[9] HB, p. 39.
[10] HB, p. 1427.
[11] HB, p. 1436.
The Applicant understood that there is a recommendation for her to access psychological therapy and that she had funding in her plan to do so. She accepted that Dr Lehn[12] and Dr Van den Berg[13] had recommended this in their reports. She could not recall her treating psychiatrist, Dr Ramalingam, having made that recommendation.[14]
[12] HB, p. 1253 (R11). Report dated 17 October 2023.
[13] HB, p. 1231.
[14] HB, p. 94; p. 356.
The Applicant did not accept her condition may benefit from her undertaking movement or exercise. The effect of the Applicant’s evidence is that when she gets up for her waking day at 6.30pm, she sits in her chair for her waking hours, unless she is unwell in which case she will lay on the couch. The only times she gets up is to go to the bathroom which “is maybe two or three times an evening”. The Applicant was cross-examined as to whether she was resistant to undertaking movement. She seemed reluctant to be drawn on the issue, stating “I can move my finger or my eyes. I can’t be resistant if I do not understand what is being asked”.
It was the Applicant’s evidence that one of the triggers for her seizures is movement: “I could literally move my leg a centimetre and have a seizure”.[15] She further stated, “I have concerns of movement because I cannot move – I cannot exercise. So that’s just physically not possible”.[16] The effect of her evidence was that one of the reasons she cannot exercise is because it triggers seizures, stating that she could “barely move”.[17]
[15] Transcript 26 June 2024, p. 23, line 3.
[16] Transcript 4 April 2024, p. 102, lines 20-22.
[17] Transcript 4 April 2024, p. 102, line 38.
The Applicant was cross-examined about her GP’s recommendations for weight loss during 2022 and 2023. The Applicant accepted that, from April 2022, the GP was having discussions with her about weight loss, including dietary changes, possible bariatric surgery and prescribing Ozempic or similar protocols. The Applicant stated she was looking for assistance in relation to fatty liver disease at that time and that she, rather than the GP, raised the possibility. The Applicant commenced taking Ozempic in March 2023 and has lost weight since taking this medication but was unaware precisely how much.
The GP also recorded that the Applicant and her mother were “very resistant to the idea” of the Applicant undertaking movement or exercise. The Applicant frequently stated that she could not recall specific medical appointments but she also insisted a firm recollection that certain things recorded in her GP’s notes were not said, including notes about movement, diet and the prescription of weight loss drugs. The Tribunal observed the Applicant to be quite strident in insisting that she did not appear resistant to dietary change, exercise and movement. However, when it was suggested to the Applicant that her GP was recommending at that she “needs to continue diet and at least some movement”[18] the Applicant stated that she did not recall whether the GP had recommended this or not.
[18] HB, p. 1435.
The Applicant was questioned about the number of seizures she may have in a day and could not recall the number. She was aware that these were recorded in a book and relied on her mother and the nurses to record these. She was not therefore able to explain how she arrived at the assertion in her statement that she has had up to 12 seizures on many occasions.[19] Further, she could not recall whether she had told Dr Lehn, during his assessment of her on 9 October 2023, that the previous day she had attended a musical event.
[19] HB, p. 757.
The Tribunal noted that the Applicant had a good recall of a number of issues that were favourable to her case but she was frequently unable to recall information that may have been unfavourable.
Mrs WNLL
The primary informal support for the Applicant is her mother, Mrs WNLL. Mrs WNLL gave evidence via Microsoft teams during the hearing, in the presence of the Applicant in their home. She confirmed the living arrangements and timelines set out in the Applicant’s evidence, summarised above.
Mrs WNLL explained that the level and nature of informal support she provides to the Applicant can vary from day to day and can depend upon the formal (funded) supports that are available on that day. She wakes the Applicant at about 10am and administers the Applicant’s medication that is prepared by the nurse. The Applicant goes to the bathroom then she returns to bed while she and the RN in attendance will go outside and feed the animals. Mrs WNLL will then assist the nurses with their duties, including provision of medication, heat and cold packs for the Applicant, water, and making sure her daughter is comfortable until she returns to bed. Mrs WNLL explained that she will sleep for about four hours in the afternoon from 2pm and wake up around 6:30pm when she then wakes the Applicant. She will take her clothes in and help the Applicant to get dressed. She will then assist the nurses with all of the night duties. Mrs WNLL told the Tribunal her sleep schedule generally depends on the needs of her daughter.[20]
[20] Transcript 26 June 2024, p. 13, line 17.
By 7pm on most days the Applicant is watching television. Mrs WNLL feeds the horses and other animals in the evening and then cooks dinner. The RN on duty may make the Applicant’s bed. Mrs WNLL stated that there was no “normal” day. The Applicant may have four seizures in a short period of time. If she feels it is a “good day” she will sit in her recliner chair, and on a “bad day” will lie on the couch. The RNs will administer medications. Before the Applicant goes to bed Mrs WNLL will wash her all over with towels and get her into bed. Mrs WNLL will then go to bed at 6am and start again at 10am.
Mrs WNLL stated that, once the Applicant is in her chair, “you have to do everything for her”. This includes fetching her fans, cushions, drinks, dinner, and stated that always two to three people were required.
Mrs WNLL stated, “sometimes the job of a mother is to be company as [the Applicant] has a sad existence” and that she is worried that the Applicant will “die in her sleep”. She also stated, “I cannot imagine continuing like this. I know that she is going to die. At some point in time she is going to go. This case is all focussed on the fact that this beautiful human being is going to die and I think that the world would be a better place with her in it”. The Tribunal notes that, despite this evidence, Mrs WNLL has not taken up a number of suggestions made by medical specialists that may assist the Applicant to better manage her FND symptoms.
Mrs WNLL described her role in co-ordinating all supports and medical care for the Applicant. She stated that she would organise all medical appointments including with specialists. She would attend most of these, although an RN would attend at the Applicant’s GP for “certain reasons” (which appear to have related to Dr Gunn having expressed concerns about Mrs WNLL’s commitment to promoting the Applicant’s health, addressed in more detail below). Mrs WNLL stated that one or two RNs would accompany her and the Applicant to appointments outside the home, such as the dentist or the new GP.
In relation to the RN care, Mrs WNLL would undertake all the invoicing and recruitment, including interviewing and employing. Mrs WNLL described the nurses as “her” nurses and gave evidence consistent with her exercising complete control over employment, pay, shifts and tasking of the RNs. For example, Mrs WNLL stated, in relation to the seizure diary kept in the home, “my nurse (Ms Nicole Woods) and I put that together” and stated “my head nurse” will sometimes organise the appointments with the Applicant’s GP.
Mrs WNLL gave evidence about the Applicant’s seizures. She described the Applicant as sometimes going into rigour during the seizure, and on occasion experiencing drop seizures without warning “like someone turned off a switch”. The Applicant herself used identical language. The Applicant may also regress to a child-like state after a seizure. The effect of Mrs WNLL’s evidence was that seizures could happen to the Applicant at any time and were dangerous and life-threatening. However, the Applicant’s mother later accepted that the Applicant has never been taken to hospital or treated by ambulance staff for a seizure, and although one day an ambulance was called to the home because the Applicant’s breathing had stopped it was cancelled when she started breathing again.
She stated that there were a number of “triggers” for seizures including weather, heat or temperature change, meeting a new person, physical, environmental or emotional stressors. She stated that all seizures were recorded by the RN on duty. She also stated, on a number of occasions, that the Applicant required “line-of-sight” supervision at all times.
When asked about whether the Applicant could explore an independent living situation to further her goal, such as shared Supported Independent Living (SIL) or Specialist Disability Accommodation (SDA), Mrs WNLL stated that the Applicant would be “mortified” not to be in an environment “without me and her animals” and would need the same “line-of-sight” supervision that she requires at home. She noted that it was not always possible to maintain this if, for example, one of the RNs was sick but that, either and RN or Mrs WNLL “generally” always had the Applicant in their line-of-sight.
There was no evidence before the Tribunal of a medical or allied health professional recommending that the Applicant be kept in “line-of-sight”. Mrs WNLL stated that she was not sure where the “directive” came from and was not sure if it was her or “the fact that, over time, we have worked out that is what we need”.[21] The Tribunal notes that this evidence is at odds with the evidence of Dr Lehn who suggested that such a practice may be detrimental in that it may increase the Applicant’s anxiety and decrease her locus of control.[22]
[21] Transcript 26 June 2024, p. 10, lines 32-37.
[22] Transcript 26 June 2024, p. 74 line 30.
Mrs WNLL gave evidence about administering what she described as PRN medications. She stated that this referred to medication given “as and when” required. She was cross-examined about information given to Ms Henry that suggested an RN was required to administer such medication. However, when asked, the Applicant’s mother accepted that there is no medication prescribed to the Applicant for a seizure or after seizure. The Applicant may take Panadol for pain, Nurofen for inflammation and Ativan for anxiety. This is administered by an RN or the Applicant’s mother. The Tribunal notes the Applicant’s evidence that she is aware of her own regular medications and does not generally require assistance with these.[23]
[23] Transcript 4 April 2024, p. 56, lines 23-28.
The Applicant’s mother accepted during cross examination that she had assumed the role of booking medical appointments for the Applicant. She accepted that she has not arranged for the Applicant to see a neurologist, despite referrals and recommendations that she do so. Dr Herd was seen by the Applicant in December 2017 and one other time, then not again. Dr Anna Schultz, neurologist, was seen by the Applicant in May 2019 and this consultation was “quite traumatic” as she was “not a good fit” for the Applicant. The Applicant’s psychiatrist and her GP recommended that she Dr Jonathan Sturm, neurologist, in 2021. The Applicant’s mother stated that she “took the referral” but did not make an appointment as, to her knowledge, Dr Sturm was not an FND specialist and obtaining an appointment was a “big effort” in their local area. She stated that she had ceased accompanying the Applicant to appointments with her GP, Dr Gunn and, eventually, the Applicant ceased seeing Dr Gunn and now sees a different GP in that practice. She accepted that the Applicant does not see a psychologist, despite the fact that all doctors who had contact with the Applicant appeared to be recommending this and that this was the “treatment of choice” for FND.[24] Treatment from Ms Corcoran, a psychologist who saw the Applicant in early 2023, was ceased and the Applicant’s mother stated that she was “not a good fit” for the Applicant. Mrs WNLL then stated that Ms Corcoran’s notes were summonsed in these proceedings and this led to the decision that the Applicant would not participate in psychological treatment until this case was over. It was not put to the Applicant’s mother that the Applicant could seek orders limiting the inspection of treating notes, and she did not volunteer any preparedness to do so.
[24] HB, p. 92; p. 356; p. 1253; p. 1215.
Therefore, despite medical specialists identifying the need for the Applicant to access a neurology consult and ongoing treatment by a psychologist, she was not seen by a neurologist after 2019, and is not currently seen by a treating psychologist despite funding for this being specified in her SPS.
The Applicant was treated by exercise physiologist Ms Berg, who ceased working at her practice prior to April 2024, but the Applicant had not since engaged a new exercise physiologist. She stated that the Applicant’s support co-ordinator was “working on that”. She accepted that Dr Ramalingam, Dr Lehn and Dr Gunn considered that exercise physiology was recommended for optimal treatment of FND condition. The evidence of Mrs WNLL as to what exercise was undertaken presently by the Applicant was that she “does water-based exercise with her EP but not so much in the winter” and that her “seizures are triggered by any movement: she would literally move her leg a centimetre and it would trigger a seizure”. She stated that the Applicant “does move as much as she possibly can”[25] and that “it’s still movement going to the toilet”[26] also stating that, apart from walking to the toilet, she may swim “on a good day”.
[25] Transcript 26 June 2024, p. 22, lines 44-46.
[26] Transcript 26 June 2024, p. 23, line 14.
The Applicant’s mother gave inconsistent evidence about the need for a dietician and the Tribunal notes that the Applicant is seeking funding for a dietician to be specified in her SPS. A note of a “very long” consultation with Dr Gunn, on 28 April 2022,[27] included various recommendations for the Applicant’s dietary changes and to consult with a dietician. The Applicant’s mother recalled that this consultation did take place but the Tribunal notes that there are no reports before the Tribunal from a dietician.
[27] HB, p.1428.
When the Applicant consulted with Dr Gunn about Ozempic, Mrs WNLL recalled discussing with Dr Gunn that the Applicant’s diet was “very good at the time” and that this was the reason why “we needed Ozempic…physically she couldn’t do any more … we weren’t quite sure we could do much more with a diet”.[28]
[28] Transcript 26 June 2024, p. 24, lines 12-15.
Dr Gunn’s note of a consultation with the Applicant on 26 September 2022[29], when Dr Gunn had the results of the Applicant’s recent liver function tests and reported that the Applicant had fatty liver disease, also contained the following information:
“she needs medications or surgery as diet has not worked and she is not able to do any exercises…long discussion about benefits of weight loss…I do not feel that [Mrs WNLL] is going to be supportive of WNLL’s weight loss or any efforts to change her weight, her exercises or any other health promotion.”
[29] HB, p. 1431.
Mrs WNLL “strongly disagreed” with the accuracy of the sentiments attributed to her by Dr Gunn in this note and considered the statement as not “productive”. The Tribunal notes that this document was extracted from summonsed material and accepts that it reflects the genuine concerns held by Dr Gunn at that time.
In the note of a consultation with Dr Gunn on 21 February 2023[30], she noted that the Applicant “needs to try Ozempic” and the note also contained the following information:
“mother does not want her to try until June. I have recommended to start as soon as possible… WNLL is aware.”
[30] HB, p. 1436.
On this occasion the Applicant followed the recommendation of Dr Gunn and began Ozempic. She began to lose weight within a few months and continues to do so, now on a higher dose.
Mrs WNLL was subjected to extensive cross-examination about the recording of the Applicant’s seizures and the accuracy of her evidence about the number and severity of these. Ultimately, this time-consuming evidence was of limited assistance to the Tribunal. The Applicant’s mother was also cross-examined about the way that she had reported the Applicant’s capacities and the frequency and nature of the seizures to Dr Lehn during the Applicant’s assessment. Again, this evidence, including the suggestion that the Applicant’s mother had “actively misled” Dr Lehn, was of little bearing on the issues for determination by the Tribunal as his evidence was to the effect that his approach, and therefore his evidence, would not change with variations to the frequency and nature of the Applicant’s seizures.
The Applicant has in place a seizure management plan (SMP) which the Applicant’s mother stated she developed together with Ms Nicole Woods and Ms Cheryl Feeney when they were providing care to the Applicant. It seemed apparent from her evidence that the Applicant’s mother did not have a clear understanding of why a SMP was important and what role the plan might play in providing guidance and reassurance to those managing the Applicant’s seizures. The Applicant’s mother stated that a “template” was used and that she could not remember why it was created. She confirmed that the SMP was not prepared with input from a neurologist or from a treating psychiatrist, and seemed most surprised at the suggestion that a psychiatrist might assist in the planning for the stages of seizure management. Dr Lehn considered, in his October 2023 report, that the SMP should be assessed with a health professional with the relevant experience and that the Applicant should be supported to learn about her early warning signs for a seizure and be provided tools and techniques to stop or at least reduce attack severity.[31]
[31] HB, p. 1253.
The Applicant’s mother expressed the view that she required funded respite from her informal caring duties in order to do her own thing or leave the house. She stated that if there was only funding for one RN, she would not take respite as she “would not do that to an RN”. This seemed to be her position whether or not a second HISW was to be present at the time.
The Applicant’s mother accepted that she undertook training of the RNs at times and provided them with specific examples of how to manage the Applicant during seizures, such as placing cushions in her hands. Examples of this are noted in incident reports in the hearing bundle.[32] She accepted that she also trained the RNs as to the food and drinks the Applicant likes and her requirement that they vacuum and clean bathroom every day, stating that the Applicant “does have OCD”.
[32] HB, p. 571.
It is noteworthy that Mrs WNLL was, throughout her evidence, disinterested and dismissive of the view of others, apart from the view expressed by the RNs. She was unwilling to make concessions where it would have been reasonable on the evidence for her to do so. She did not present as a carer who had in the past, or intended to in the future, put into action recommendations for the care of her adult daughter made by various medical and allied health specialists. This was despite her dominance over the Applicant and the household and her assumption of the role of employing the Applicant’s carers, assigning their tasks and undertaking some training of the RNs, and taking responsibility for making the Applicant’s medical appointments.
Ms J Nelson, Ms B Nelson and Ms Sheeran, Registered Nurses
A number of registered nurses (RNs) currently providing care to Mrs WNLL in her home each provided the Tribunal with a statement and were the authors of multiple incidents reports in evidence, and three RNs gave oral evidence to the Tribunal. [33]
[33] HB, p. 759; p. 767; p. 779; p. 773.
Ms J Nelson gave evidence that her role in supporting the Applicant included constant observation such that the Applicant was always in line-of-sight, and to eliminate potential seizure triggers. She stated that “every day is completely different” and described Mrs WNLL’s seizures a “violent, life-compromising,” and “every one is different”.[34] She also stated that “the volatility of her seizures have increased”. She was trained by Rebecca Jones. The evidence demonstrated, and Ms J Nelson accepted, that Ms Jones was not an RN, but in fact a HISW. [35] Ms Jones was described by Ms J Nelson as having “the skill set of an RN not a high end support worker” and that she had assumed she was an RN.
[34] Transcript 27 June 2024, p. 8, line 11-21.
[35] HB, p. 1551.
Ms J Nelson stated that line-of-sight observation was required because the Applicant needs to be monitored constantly like in an intensive care setting, where don’t take your eyes off your patient. She would be constantly looking to identify and manage potential seizures and signs could include a flushed faced, look or behaviour that is different, guarding eyes from the light and, if she is aware that she may have a seizure, the Applicant may softly call out.
Ms J Nelson stated, “I am constantly watching [WNLL]. Making sure she is hydrated, spills are cleaned to avoid risks at transfer, and asking what does she need”?[36] However, Ms J Nelson she also stated that she does not accompany the Applicant into the bathroom, and that she undertakes various domestic tasks in the house during her shift which were not undertaken within line-of-sight of the Applicant. This evidence differed to that of Ms Sheeran, who stated that she keeps the Applicant in line-of-sight. She stated that she does so to observe signs of deterioration or distress. She stated that she will talk to the Applicant and ask her how she is feeling, or put an oxygen saturation monitor on finger, count her respirations and take blood pressure.
[36] Transcript 27 June 2024, p. 38, lines 19-24.
Ms B Nelson recalled a seizure when she found the Applicant on the bedroom floor and stated that she was concerned about the velocity at which she was hitting her head on the floorboard. It does not appear that the Applicant was in line-of-sight when that seizure commenced.[37] The statement of Ms Nicole Woods, who did not give oral evidence at the hearing, noted that the RN does not keep the Applicant in line-of-sight whilst she is asleep but, instead, conducts a check on the Applicant every 15 minutes.[38]
[37] HB, p. 693.
[38] HB, p. 781.
Ms J Nelson and Ms B Nelson both gave evidence to the effect that Mrs WNLL had provided instruction to them on various domestic tasks including vacuuming, laundry, cleaning the bird cage, feeding the dog and parrot and other domestic cleaning tasks, preparing medication, loading and unloading dishwasher, after meal clean up, the washing, removing dust, and a list of ADLs and task that the Applicant cannot complete herself, so that the RNs are not sitting around. Ms B Nelson stated that Ms Nicole Woods had trained her describing her as the “supervising RN” during trial shifts.
The RNs did not give evidence that demonstrated that the Applicant is to receive PRN medications that can be administered only by an RN. She receives medication as needed for anxiety or pain and it is administered in accordance with the prescription.
Each of the nurses gave similar evidence about the nature of the work they do and, in particular, how they manage the Applicant’s seizures. The effect of their consistent evidence is that, whilst each situation is unique, care can involve getting the Applicant safely to the bed or on the ground, monitoring her blood oxygen levels, checking whether her airway is occluded and re-positioning her if possible, looking for signs that she is deprived of oxygen and managing the Applicant to recover. She may go into rigour, which makes management more challenging, and she may require the bag valve mask to be administered. Following a seizure, the Applicant will be monitored. She may require assistance with thermoregulation (heat or cold packs).
Ms J Nelson gave evidence about working with a second RN, stating that communication occurs by working as a team, intense with communication and compared the situation to working in a hospital but without other staff to assist. An “instant assessment” was necessary with eyes and ears, as well as vitals, and that the RNs would “go into overdrive” when a crisis happens.
Ms B Nelson stated that some seizures can be “very violent” and that it may be necessary to protect the Applicant with cushions around her or in her hands and to clear her airway etc.[39] She stated that a seizure may intensify, including to the state where she loses her breath and that the Applicant needs monitoring continuously throughout a seizure as it can change at any time.[40]
[39] Transcript 27 June 2024, p. 76, line 13.
[40] Transcript 27 June 2024, p. 76, lines 20-21.
Each of the RN’s who have evidence during the hearing expressed concern that, if they were working with a second person, this would need to be a fully trained and qualified RN, and not a HISW (as suggested on behalf of the Respondent). Various reasons were expressed:
(a)Training or direction from a support worker by the RN during a serious incident was impossible;
(b)A support worker may not know how take a manual pulse;
(c)A support worker may not know what needed to be done in the circumstances;
(d)If the Applicant fell awkwardly and her airway was impaired it may be necessary to keep a patent airway and a support worker may not be able to assist with this task;
(e)If a support worker was not registered with APRHA, the NSW nursing and midwife association states that the RN would be liable for any direction given to support worker during a critical incident. An RN’s registration could be “compromised” and their professional indemnity insurance would not respond if they were responsible for delegating to a support worker who was negligent. The considered they would be “accountable” and “putting the Applicant at risk” and did not want to be responsible for tasks undertaken by someone who doesn’t have adequate training; and
(f)The training of an RN is not replicated in descriptors for HISW training. Whilst NDIS guidelines state that an RN could delegate, the RN would remain responsible for delegated tasks and they did not wish to be responsible in that way.
Ms B Nelson stated that she had never worked with a HISW but had expressed the view in her statement that HISWs were untrained and did not have the necessary experience. She stated that she had formed that view by reading the skill descriptors in the relevant documents. She noted that the Applicant’s seizures differed from epileptic seizures and that it was “hard to see” how a HISW would know those differences.
When it was suggested to Ms Sheeran that a HISW could have assisted the nurse to support the airway she stated that she did not know whether or not this was correct. She also was reluctant to accept that, to the extent that a HISW needed training for the Applicant’s seizures, that training could occur when things were calmer and no seizure was occurring or that a HISW could have a period of training when they are observing others managing seizure. Ms Sheeran’s position was that it was RNs who were trained to have this skill, stating that “this is part of our standards of nursing practice and is what nurses are trained to do. RNs learn to do that every day”.
Exhibit 6, tendered by the Applicant, included a fact sheet and other documents relied open by the RNs in arriving at the conclusions they had expressed about the risk of delegating to a HISW. To the extent that the RN’s gave evidence about their responsibilities if a HISW did not having “adequate training”, those RNs who gave oral evidence indicated that they were not aware that it is the service provider’s responsibility to ensure that a HISW has the knowledge, skills and experience to perform their role in relation to seizure management.[41]
[41] HB, p. 932.
Similar concerns were raised in a report prepared by Ms Woods in relation to working with a HISW.[42] Ms Woods is also an RN but her evidence could not be tested as she was not available to give evidence at the hearing. Ms Sheeran and Ms J Nelson provided evidence as to their opinion of potential legal liability said to arise from training, supervising or delegating tasks to a HISW. However, they were unable to qualify or explain the basis for expressing that view and accepted that they were permitted to supervise at their discretion, and each stated that they had not obtained legal advice on this issue. Whilst the RNs expressed similar concerns, they did not explain the process by which they checked to ensure they were working with RNs (and in fact were not aware that one colleague was actually a HISW and not an RN).
[42] HB, p. 779-781.
The RNs’ evidence was consistent to the effect that it had not once been necessary to have the Applicant attended by an ambulance in the time they had been caring for her. On one occasion an ambulance was called but it was cancelled before it arrived. In recalling a particular incident, Ms J Nelson stated that she would have called an ambulance if the Applicant’s blood oxygen levels had gone under 94% depending on other factors such as whether her airway was compromised and stated that, if the Applicant had been non-responsive for the whole time, Ms J Nelson would have called an ambulance. Ms Sheeran considered that calling an ambulance was necessary in circumstances such as if she could not effectively resuscitate the Applicant and could not restore oxygen levels or breathing and required further medical attention or if the Applicant fell and required further medical assessment.
During the hearing, the RNs were cross-examined extensively about the frequency and intensity of the Applicant’s seizures and the accuracy of recording of her seizures. It was also put to each of the three RNs that they had selected to give evidence about particular incident reports on particular days in order to persuade the Tribunal to form a “worse-case scenario” about the Applicant’s seizures to best advance the Applicant’s case in these proceedings. Each nurse respectfully refuted that suggestion.
Questions about whether the RNs were aware of recommendations that the Applicant should consult with various health professionals were also answered consistently to the effect that this was not part of their job description. For example, Ms J Nelson stated, “I am there to look after the Applicant’s safety and health on my shift,” and “we are trained in managing decline”. Similarly, the RNs were not involved in making any recommendations to the SMP and, despite the management of seizures being the main task that the RNs considered could only be undertaken by someone with their skill and training, each was oddly unconcerned about the SMP and how to improve it.
Dr Lehn noted that it is difficult to improve a patient’s functional symptoms unless the underlying psychological drivers are addressed.[60] The aetiology of FND is a biopsychosocial framework with predisposing, triggering and perpetuating issues. The biological (structural) brain damage is not well understood but thought to be linked to genetic factors and the psychological stressor are most likely PTSD, anxiety and depression. Where the drivers of the disorder are not addressed it becomes very hard to address the symptoms. Long disease duration is the biggest factor in whether the symptoms are more likely to be refractory. It is hard to unlearn symptoms, particularly with poor underlying mental health, and the co-existence of other pathologies make it less likely that these symptoms will resolve. The Applicant would “very much” benefit from ongoing work on her underlying mental health conditions and long-term input from a psychologist. A psychologist’s support may help to manage her symptoms better and reduce attack frequency.
[60] HB, p. 1259.
In his report, Dr Lehn stated that it was apparent during his assessment of the Applicant that she had “a loss of sense of agency over her bodily functions”. He recommended that “an effort be made to give her more of a locus of control again, such as teaching her about awareness of early warning signs and tools and techniques to stop or reduce attack severity”.[61] Dr Lehn gave some further evidence about those comments with respect to the potential for loss of a sense of agency over bodily function and how this may impact seizure activity. It was noted that the Applicant’s mother had assumed control of the Applicant’s life, likely due to necessity, leaving the Applicant with very little sense of control over these things.
[61] HB, p. 1260.
Dr Lehn stated that educating the Applicant to control her own seizure triggers and to recognise warning signs may assist to understand her condition and to give her “more of a locus of control again”. Dr Lehn noted that this can be scary for anyone, including provoking anxiety in family and in health professionals such as the RNs, but if the NDIA funds more and more supports for the Applicant, her condition may get worse and not improve. It would be positive if the Applicant could have control over her own supports and to relieve her mother of this.
Dr Lehn explained that FND does not fit well into the current health system and that Emergency and Outpatient Departments and the NDIA drives locus of control away from patients. These are drivers in a direction that is not helpful. Dr Lehn noted that there is a subset of patients with severe refractory symptoms that do not shift who need long term disability services. In this case these patients need long term support. However, even if the Applicant cannot recover and improve, he did not consider that two nurses with her in line-of-sight at all times would be necessary.
Dr Lehn further stated that “line-of-sight” supervision drives a vicious cycle of less and less control and increases anxiety and drives away a person’s locus of control. He accepted that it was not possible for the Applicant to identify her early warning signs at the moment such that support was required for her seizures but ideally the Applicant would learn about her warning signs and could alert someone.
Dr Lehn stated that the Applicant’s obesity made seizure management difficult and that if her obesity was addressed this may make positioning her easier. He noted that this was largely a pragmatic observation and that weight loss did not guarantee increased mobility because of her FND. He also stated that whilst improved mobility may lead to the Applicant not needing 24-hour a day support he could not predict this with certainty.
Dr Lehn considered that the Applicant would benefit from regular and long-term physical therapy.[62] He accepted that it could be difficult to find expert FND physiotherapy services but noted that some of those principles were not complex and would be learned by a physiotherapist.
[62] HB, p. 1263.
When Dr Lehn was made aware of the Applicant’s attendance at a music performance the day prior to his assessment, he accepted that those events were not consistent with the Applicant’s functional capacity as reported, and the picture painted in that assessment was of a more severe disability. He also accepted that this could have been one exceptional day but noted that this provided “hope” that the Applicant could spend more time in the community than she currently does.
Dr Lehn agreed that a trained carer may well be able to manage the Applicant’s seizure activity during her inactive hours. He did not see why a trained support worker could not position the Applicant and check her oxygen levels. He accepted that the Applicant was at higher risk of having a seizure when awake and it would be ideal to have an RN present. He considered that a support worker under guidance of the RN would seem sufficient in terms of supports to manage those situations.
He noted that, importantly, the PNES type of seizures experienced by the Applicant can look frightening but are not harmful for the brain.
Ms Berg
Ms Berg, exercise physiologist, prepared a report dated 20 December 2023, but did not give evidence during the hearing. In her report, she identified a number of goals that she identified, with the Applicant, related to improving her physical capacity and tolerance.
Ms Berg stated that, due to the unpredictable nature of the Applicant’s FND, it was imperative for the Applicant to complete exercise under the supervision of an exercise physiologist to ensure her safety and that progressions are prescribed appropriately.[63] Ms Berg recommended that the Applicant receive ongoing support and guidance from an exercise physiologist to improve the Applicant’s exercise tolerance, weight management, mobility, global muscle strength, endurance, and also her confidence.[64]
[63] HB, p. 499.
[64] HB, p. 499.
Ms Berg recommended the Applicant receive ongoing care from a podiatrist as she was unable to independently maintain foot care and hygiene as she is at high risk of falls when bending over and has significantly reduced flexibility and impaired mobility.[65] Further, Ms Berg stated that the Applicant required support and guidance from a dietitian related to nutritional needs, eating habits and aid with weight management.[66]
[65] HB, p. 500.
[66] HB, p. 501.
Dr Van den Berg
Dr Van den Berg is a clinical neuropsychologist who conducted a neuropsychological assessment of the Applicant and prepared a report dated 6 July 2023, in which she expressed the following conclusions, which were not challenged by either party:[67]
(a)Despite challenges during the assessment (the Applicant had a seizure) the Applicant was able to perform in the expected range in terms of mental speed, learning and memory, visual skills, language and executive functioning (complex thinking skills). Basic attention was somewhat reduced on testing, although likely compromised by being completed in the early post-seizure phase, and her functional attention and concentration skills were observed to be intact;
(b)There was no indication that the Applicant had any significant cognitive impairments;
(c)The Applicant’s observed cognitive difficulties, and her self-reported memory problems, were likely explicable in the context of her mood symptomatology, particularly as no notable deficits were identified on formal cognitive testing; and
(d)Continued treatment to manage and alleviate her psychological symptoms was recommended on the basis that this “will not only improve her wellbeing and quality of life, it will also optimise her cognitive functioning”.
[67] HB, p. 1215.
During the hearing, Dr Van den Berg was questioned about the impact of the seizure on the cognitive assessment undertaken. She stated that, whilst, she would have preferred to do more testing, she obtained enough information about her functioning from the assessment and was satisfied that the assessment was not compromised to the point that it was invalid.
Dr Van den Berg confirmed her recommendation that the Applicant “continue” to engage in ongoing psychological therapy.
CONSIDERATION
Registered Nursing Supports
The currently funded level of nursing and care for the Applicant is sufficient for an RN to be present 24 hours a day, and for a HISW to be present 12 hours per day. The Applicant sought funding for a second RN, rather than a HISW, for 12 hours per day.
The evidence from the Applicant’s mother and the RNs themselves, who all strongly support funding for additional RN care, is that when one RN is working and the Applicant is awake, they require another RN for support. That is the Applicant’s case even though Mrs WNLL, who has no formal medical training, is frequently the second carer when only one RN is available, and even though the Applicant previously engaged a HISW who was responsible for training a number of the RNs who gave evidence, without those RNs being aware of her status as a HISW at the time.
The Applicant’s goals include building her independence and receiving support to access the community and pursue her interests. However, the effect of the evidence about the Applicant’s physicality is that she is presently leading an almost complete sedentary life. The Applicant does not leave her home other than to attend medical appointments. One exception to this was an outing on 8 October 2023 to attend a musical performance which, by all accounts, was most enjoyable for the Applicant. She did not have a seizure before or during the performance and had an episode which appeared to be initiated by motion-sickness in the car on the way home, which is unsurprising give how “exceptional” this outing was compared with her usual, home-bound routine. It is not clear why the Applicant does not go out more frequently and there is no medical explanation for this or evidence that would suggest that the Applicant cannot go out.
The evidence of Dr Lehn is strongly suggestive of the benefits of weight loss and movement, but also of the more fundamental benefits to an FND patient that physical independence can bring.
The evidence demonstrates that the Applicant wakes and rises from her bed at about 6pm and goes back to bed at 3am. It is not clear why the Applicant has adopted a nocturnal lifestyle, other than her explanation that this is better for her mental health. However, there is no medical explanation for this. Further, the Applicant can get up earlier as she does so to attend medical appointments, did so to attend the musical performance and to participate in the hearing of this review across multiple days. There is no evidence available to the Tribunal of any negative impact this may have upon the Applicant’s mental health.
During her waking hours, it is the evidence of the Applicant’s mother and the RNs who attend to her that they keep her in their line-of-sight. However, the RNs are also given a wide range of household chores and other tasks which may conflict with this instruction. It seems that, sometimes, the Applicant is not in line-of-sight when a seizure occurs. The Applicant did not produce any medical evidence supporting the need for line-of-sight supervision. The RNs have apparently accepted instruction from the Applicant’s mother that this is how they are to care for the Applicant, and the Tribunal did not understand any of the RNs to have given evidence of their own view as to the necessity for this. In any event, none of the RNs have specific expertise in caring for patients with FND, other than their experience working with the Applicant.
The only evidence before the Tribunal from an independent specialist about whether “line-of-sight” care is required is from Dr Lehn. It is his opinion that attention upon the body of a patient with FND can bring on a seizure, and that a range of strategies can be learned by a patient to prevent that type of fixation and shift the locus of control of the patient’s body back to them.[68] The effect of this evidence is that line-of-sight observation is not necessary and may, in fact, be counter-productive to the Applicant’s effective management of her seizures, and to her goals based on achieving independence.
[68] HB, p. 1260.
A longer-term goal of the Applicant is to receive the ongoing support of allied health professionals to improve the Applicant’s mental health and physical health. However, the Applicant does not receive ongoing psychology, has ceased exercise physiology, and does not seem to have taken up her GP’s recommendation, or that of Dr Lehn, that she would be assisted by movement or exercise.
It appears that the thinking behind this is the opinion of the Applicant’s mother, also adopted by the Applicant, that any movement can trigger a seizure, coupled with the view of the Applicant’s mother, adopted by the attending RNs, that seizures are violent and life-threatening. This thinking is not consistent with the medical evidence available to the Tribunal, and particularly the opinions of Dr Lehn.
However, according to the anecdotal evidence, the most dangerous part of a seizure is occlusion of the Applicant’s airway. It is understandable that it is frightening for the Applicant’s mother, and even for qualified and experienced RNs, to manage the Applicant when she is positioned in a way that makes it difficult for her to breathe.
The Applicant has options available to her to minimise the danger to herself and the frightening nature of this for her carers, but they are not likely to produce immediate functional benefits and the Applicant will need ongoing RN care in the meantime. Firstly, she could take up the suggestion of Dr Lehn’s, her psychiatrist and her former GP and consult a neurologist to obtain up to date advice on how to manage her seizures as they now manifest. She will need her mother’s help to do this, or for her support co-ordinator to assist her directly, if her mother continues to not assist the Applicant in this way. Secondly, she could connect with an FND trained psychologist to develop strategies to anticipate and manage seizures. Thirdly, consistent with the recommendations of her former GP and Dr Lehn, the Applicant can engage in exercise, movement or whatever description of physical reconditioning is most palatable to the Applicant. This may continue to assist her with weight loss, making her easier to position when that is needed, but may also assist with her mobility which, in turn, can impact her functional capacity and thus be facilitative of social and economic participation. Finally, she could also develop a meaningful seizure management plan to assist those who may be near her when she has a seizure.
Unfortunately, to date, the team of RNs that have been funded to be available around the clock to support the Applicant do not appear to have regarded it as part of their role to encourage the Applicant to attend her recommended medical and allied health specialists, or to exercise, or even to move. They regard themselves as being available to meet the needs of the Applicant, and “preserving [her] life”.[69] However, as she receives funding to have a nurse with her 24 hours a day, it may be of assistance to the Applicant if those nurses could take the time to read and understand the expert recommendations made to the Applicant about movement, rather than to decry this task as irrelevant to their disability-related support of the Applicant. Dr Lehn identified that nursing experience in critical care is not nursing experience in FND, so the RNs may wish to spend some of the 24 hours a day, while they are not engaged in providing seizure management to the Applicant, in reading and understanding what has been recommended by doctors and allied health specialists and upskilling to assist the Applicant in this way. This approach may be a more effective and beneficial use of their time than attending to the substantial list of household chores insisted upon by the Applicant’s mother. This approach is also better aligned with the general principles for the provision of funded supports under the NDIS, which include a participant’s pursuit of their goals, to maximise their independence; to live independently and to be included in the community as fully participating citizens; and to develop and support the capacity of people with disability to undertake activities that enable them to participate in the mainstream community and in employment.
[69] Transcript 27 June 2024, p. 63, line 16.
The cost of around the clock nursing care is significant, and the RNs have a responsibility to discharge their duties to the Applicant in providing disability-related supports, rather than accepting instruction as to the scope of their work solely from the Applicant’s mother. Further, the provision of clinical treatment of health-related and other activities aimed at improving a participant’s heath status will not be funded under the scheme. Whether a support is rendered by an RN, a support worker or an allied health specialist it must be rendered consistently with the purposes and principles of the scheme.
The RNs manage seizures when they occur. It is common ground that there can be multiple seizures in a single day and that there can also be multiple days without seizures. There was inordinate focus, by both parties in this case, upon the frequency of the Applicant’s seizures and whether the frequency and intensity of the seizures is increasing. It is also common ground that the Applicant does not know when a seizure is coming and, on some occasions, she has found herself physically positioned where her airway is occluded and she has stopped breathing. That must have been frightening for the Applicant, her family and the nursing staff and support workers involved. The response to this frightening situation has been to erect a vigil of around-the-clock supports and to favour a line-of-sight approach when carers are not engaged in other tasks. Whilst understandable, there is scant evidence that this is best practice or even necessary. There is no evidence that this is assisting the Applicant in meeting her short, and longer term, goals of facilitating her social or economic participation.
Further, there is ample evidence that neurological and psychological consultation, treatment and support to assist the Applicant in managing her FND symptoms, learning when a seizure might occur and planning for how those around may assist may positively impact the Applicant’s functional capacity. However, the Applicant has not been accessing these recommended services. She is in a nocturnal, sedentary holding pattern at home. She is reliant on her informal and formal supports and neither her mother, nor any of her team of nurses, consider it is their responsibility to assist the Applicant with:
(a)Encouraging movement or exercise or engaging in physical therapy;
(b)Arranging outings or participation in activities in which she is interested;
(c)Ensuring that she has access to regular psychological care;
(d)Insisting that she see a neurologist; or
(e)Improving the seizure management plan.
What seems clear from the evidence is that the current, high level of care required for the Applicant is determined by three factors: multiple PNES per day, poor mobility and poor cognitive function. What is not clear is how these factors are being addressed, rather than simply managed, and how uninterrupted nursing care, without the taking of these important steps, will be effective and beneficial for the Applicant in the longer term. It is for this reason that the Tribunal has observed that a reassessment date in six months’ time is a sensible time frame within which to determine whether the Applicant intends to take up these various recommendations and access recommended services in a way that may improve her functionality and, in turn, potentially alter her support needs. Those disability-related needs, rather than any health-related issues arising from a failure to engage with those services, can be reassessed at that time in light of what is then reasonable and necessary.
As to the type of additional personal support in addition to the 24 hours a day of RN funding, Support Rule 3.1 provides additional “value for money” considerations in determining whether the support meets subsection 34(1)(c). There is evidence before the Tribunal of the comparable support of a HISW who can be paired with an RN during the Applicant’s waking hours and achieve the same care outcomes for the Applicant at a substantially lower cost than providing two RNs during this period. The Tribunal finds that the current funded support regime represents value for money in that the costs are reasonable, relative to both the benefits achieved and the cost of alternative support. However, the Tribunal is not satisfied that the higher cost of providing an additional RN, beyond 24-hour care, provides value for money. Support Rule 3.2 provides additional considerations in determining whether the support is effective and beneficial under subsection 34(1)(d). The consensus of expert opinion in this case, other than from the nurses who provide the supports, is that a HISW has adequate training to support the RN during the Applicant’s waking hours. The Tribunal accepts the conclusions drawn by Dr Lehn, Ms McCann and Ms Henry and, accordingly, the Tribunal finds that the requirements of subsection 34(1) of the NDIS Act are not met in relation to funding for a second RN, or any more than 24 hours per day of RN funding.
As to the number of hours to be funded, the Applicant’s position is that the second support (a second RN) should be funded for 12 hours per day and the Respondent’s position is that the second support (a HISW) should be funded for 8 hours per day for the period of time the Applicant is awake.[70]
[70] Respondent’s written submissions dated 12 September 2024.
At present, on a typical day, the Applicant is awake and out of bed for about 9 hours each day and, although the timing can vary, this is typically from about 6pm or 6.30pm until about 3am or 3.30am. Apart from allowing for the practicalities of handover and debriefing, there is no evidentiary basis for the second support to be in attendance when the Applicant is in bed and already attended by an RN. The evidence demonstrates that a HISW would need to arrive no earlier than 5.45pm ready for the Applicant to wake at 6pm and leave no later than 3.45am after the Applicant is settled in bed, which is a period of ten hours.
Having regard to the relevant evidence, the Tribunal therefore finds that the support model proposed by the Respondent of a HISW to adequately support the Applicant’s during her waking hours (which the Tribunal has found would be ten hours per day, rather than the eight contended for by the Respondent) is likely to assist the Applicant to pursue her goals, will support the Applicant to undertake activities so as to facilitate her social and economic participation and will be effective and beneficial for the Applicant, having regard to current good practice. The relevant requirements of subsection 34(1) are met in relation to the support of ten hours per day of HISW hours funding for which should be specified in the Applicant’s SPS.
Home modifications
Much of the evidence, at least in the early days of the hearing, was dedicated to the Applicant’s request, made through her mother, for the installation of a passenger lift into the Applicant’s mother’s home. Both parties have invited the Tribunal to ignore that evidence now that the Applicant, through her mother, no longer wishes to pursue the support “in this review”.
The Tribunal does not have sufficient evidence before it to determine that the support is reasonable and necessary and it cannot, therefore, be funded. The evidence relied upon by the Applicant indicated that the lift, in the form proposed and recommended by Ms McCann, could not be funded because, amongst other things, it would pose an unacceptable risk to the safety of the Applicant and lower cost alternatives had not been adequately explored. The Tribunal’s observations about the request in this case will not bind a future decision maker who may consider a future request for such funding.
Other supports
The Applicant submitted that the following additional supports were reasonable and necessary:
(a)up to twice weekly chiropractic sessions;
(b)sessions with a dietician over a 12 month period;
(c)hours per week for cleaning;
(d)3 hours per week for gardening; and
(e)increased funding for respite, being 2 x RNs at home, 24/7 for two weeks.
The evidence in relation to chiropractic care was limited. Various reports were provided by the Applicant from Mr Seisun, the Applicant’s treating chiropractor, who first saw her in 2016, prior to her FND diagnosis.[71] She was initially referred to him after suffering an acute sprain. Mr Seisun has stated more recently that he treats the Applicant for pain associated with her seizures.[72] In a report from Ms Berg, exercise physiotherapist, she recommended ongoing review and support from a Chiropractor to ensure that the Applicant has the necessary supports in place to assist her in managing disability-related symptoms and improving functional capacity.[73] She stated that this was because the Applicant found the support beneficial, but did not state that she was exercising her professional judgment that this was a reasonable and necessary support.
[71] HB, p. 1074 – 1079; HB, p. 430.
[72] HB, p. 1077.
[73] HB, p. 501.
The Respondent submitted that there is insufficient evidence linking chiropractic care to the Applicant’s disability. The Tribunal accepts this submission, noting that neither Mr Seisun nor Ms Berg gave evidence during the hearing. The Tribunal further notes that pain relief is a medical issue that is accepted from the scheme through the application of rule 7.5 as it relates to ongoing medical issues. As such, it is also a support that is more appropriately provided through the public health system and not a reasonable and necessary support to be specified in the Applicant’s SPS.
The Applicant stated at the commencement of the hearing that she did not seek funding for a dietician. However, some evidence about the Applicant’s diet emerged during the hearing at a reasonable interpretation of the notes of the Applicant’s former GP, Dr Gunn, which stated the Applicant “needs [a] dietician”[74] are consistent with Dr Gunn’s contemporaneously recorded concerns about the Applicant’s need to manage her weight. The Applicant has since started taking Ozempic and her mother has stated that she made various changes to her diet, but Dr Lehn observed that the Applicant continues to present as obese.
[74] HB, p. 1429.
The state of the evidence is such that the Tribunal cannot be satisfied that this is a reasonable and necessary support and this is in part a result of the Applicant choosing not to make relevant witnesses available after deciding not to actively pursue the support. However, the Tribunal observes that a dietician may offer additional practical support to the Applicant that may assist in meeting her goals. If evidence about this proposed support, which addressed the criteria in subsection 34(1) of the NDIS Act, before the reassessment date, it can be considered at that time.
The Applicant sought cleaning and gardening support. The Tribunal notes the extensive evidence from the RNs, who are funded to attend the house 24 hours a day, about the extensive cleaning regime put in place by Mrs WNLL and which they are required to undertake to avoid “sitting around”. The Tribunal is not satisfied that the Applicant has additional needs that are not met by this support and by the informal support of her mother, who tends to the garden and animals.
In relation to the issue of respite, the Applicant is requesting increased support for 14 days provided in her home by RNs on a 2:1 ratio, 24/7. This support is sought in addition to the funding the Tribunal has determined is appropriate, being 24/7 RN on a 1:1 basis with 2:1 support for ten hours provided by a HISW. The Respondent submitted that no funding for respite care in the Applicant’s home is required. As respite is apparently intended for the Applicant’s mother, as her informal carer, the Respondent submitted that the Applicant’s mother will be able to leave the Applicant in the care of the RN and the HISW whenever she wishes to do so and for as long as she wishes to do so, and that there is ample opportunity for her to sleep and undertake task at home as she wishes.
It was put to the Applicant’s mother by the Tribunal that “if there was a period of time where there were two supports in place, whether that is a registered nurse and a high intensity support worker or two registered nurses, depending on the view the Tribunal takes, is that not a time where you could leave the house completely and do what you needed to do?”. The response of the Applicant’s mother was “if there were two registered nurses, yes, I would do it. If there was a high intensity support worker, no I wouldn’t ….”[75] The Tribunal notes that this would be an election on the part of the Applicant’s mother and would not generate an additional need for further reasonable and necessary supports.
[75] Transcript 26 June 2024, p. 81, lines 1-7.
Ms Henry’s evidence in chief as to respite was equivocal and Ms McCann accepted, under cross examination, that, with the support of one RN 24/7 and 2:1 support during the Applicant’s waking hours, the Applicant’s mother would no longer have caring responsibilities while the Applicant was awake. The Tribunal accepts this evidence and finds that there is no basis to specify funding for respite from carer responsibilities for the Applicant’s mother and the Applicant is adequately cared for by the current and proposed supports.
If there is a need for respite for the Applicant herself, it is unclear what the Applicant’ preference would be. She did not give any evidence about whether she would prefer respite, with her caring team, by spending time away from the home in a different environment. Whilst the Tribunal has not reached a level of satisfaction that any respite from her informal caring requirements will be required for the Applicant’s mother, the issue of potential respite for the Applicant may be worth exploring on reassessment, if that aligns with the Applicant’s wishes and is determined to be reasonable and necessary.
For completeness, subparagraph 3(3)(b) of the NDIS Act requires regard to be had to the need to ensure the financial sustainability of the National Disability Insurance Scheme. In addition, subsection 4(17) sets out:
It is the intention of the Parliament that the Ministerial Council, the Minister, the Board, the CEO, the Commissioner and any other person or body is to perform functions and exercise powers under this Act in accordance with these principles, having regard to the need to ensure the financial sustainability of the National Disability Insurance Scheme. There was no evidence before the Tribunal regarding the supports potentially affecting the financial sustainability of the National Disability Insurance Scheme. The recreation of an hospital-like standard of care for a participant at home may be reasonable and necessary at the moment and has been accepted by the Respondent notwithstanding the provisions of subparagraphs 3(3)(b) and 4(17) of the NDIS Act. However, where there are steps that can be reasonably taken to manage the Applicant’s seizures and improve her functional capacity, and where this may have an impact on how much care she requires each day, failure of participants to take such reasonable steps will eventually impact the sustainability of the scheme. There is no basis at the moment to conclude that, in the particular circumstances of this case, funding of the proposed supports is likely to have an adverse impact on the sustainability of the NDIS but this issue may be the subject of consideration at reassessment.
CONCLUSION
For the reasons set out above, the Tribunal is satisfied that funding for ten hours per day for support from a High Intensity Support working meets the requirements of a reasonable and necessary support as defined in the NDIS Act until reassessment takes place in six months’ time.
DECISION
The decision under review is set aside and the decision is remitted to the Respondent for reconsideration in accordance with a direction that the Applicant’s approved statement of participant supports specifies, from the date of this decision:
a)funding for the support of ten hours per day for a High Intensity Support Worker;
b)that the reasonable and necessary supports otherwise specified be replicated until the reassessment date;
c)that the reassessment date is six months from the date on which funding is provided for the additional supports specified in this decision.
I certify that the preceding 186 (one hundred and eighty-six) paragraphs are a true copy of the reasons for decision of Senior Member K Buxton.
.................................[SGD]...................................
Associate
Dated: 23 September 2024
Dates of the hearing: 3, 4, 5 April 2024
26, 27, 28 June 2024
9 July 2024
Date of final submissions: 12 September 2024
Applicant: Ms Stephanie Blaker (appearing on behalf of WNLL)
Counsel for the Respondent: Ms Melissa Fisher
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