Kupke and National Disability Insurance Agency
[2023] AATA 2830
•7 September 2023
Kupke and National Disability Insurance Agency [2023] AATA 2830 (7 September 2023)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number:2021/7050
Re:Isobella Kupke
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Deputy President Mischin
Date:7 September 2023
Place:Perth
The reviewable decision, being the decision of the National Disability Insurance Agency dated 13 September 2021 under s 100(6) of the National Disability Insurance Scheme Act 2013 (Cth) which confirmed the decision made on 19 April 2021 to approve a statement of participant supports in the Applicant’s National Disability Insurance Scheme plan, is affirmed.
.............................[Sgd]...........................................
Deputy President Mischin
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – epilepsy – assistance animal – seizure-alert dog – efficacy of the requested support – decision under review affirmed
LEGISLATION
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)CASES
Drake and Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 634
Madelaine and National Disability Insurance Agency [2019] AATA 4025
McGarrigle v National Disability Insurance Agency [2017] FCA 308
National Disability Insurance Agency v WRMF [2020] FCAFC 79
QTBR and National Disability Insurance Agency [2021] AATA 1951
TYKL and National Disability Insurance Agency [2021] AATA 135SECONDARY MATERIALS
National Disability Insurance Scheme – Operational Guidelines – PlanningAssistance Animals including dog guides
Deputy President Mischin
7 September 2023
INTRODUCTION
The Applicant, Ms Isobella Kupke, is a participant in the National Disability Insurance Scheme (NDIS). She has an acquired brain injury, epilepsy, and an unspecified intellectual disability. She was represented during these proceedings by her mother, Ms Cindy Wheelehen.
On 19 April 2021 a delegate of the Chief Executive Officer (CEO) of the National Disability Insurance Agency (Respondent) approved a statement of participant supports for the Applicant under the National Disability Insurance Scheme Act 2013 (Cth) (the NDIS Act).
The Applicant sought a review of that decision, seeking funding for an assistance animal, specifically an epilepsy seizure-alert dog. On 13 September 2021 a delegate of the Respondent confirmed the original decision, rejecting the request for funding of a seizure-alert dog. It is that decision that is under review.[1]
[1] Exhibit R1, T1 1.
On 14 December 2021, Ms Wheelehen wrote to the Tribunal on behalf of the Applicant:
(a)requesting funding for a ‘Raizer’ chair hoist;
(b)confirming that she sought funding for a seizure-alert animal;
(c)indicating that if a seizure-alert animal is not funded, the Applicant will need to be funded for 24/7 awake-at-night staff although ‘this is not our preference’; and
(d)requesting that support coordination for the Applicant become self-managed.
On 24 March 2022 the Tribunal, pursuant to section 42D(1) of the Administrative Appeals Tribunal Act 1975 (Cth) (the AAT Act), remitted the decision dated 13 September 2021 to the delegate of the CEO of the Respondent for reconsideration following agreement between the parties that the Raizer chair hoist would be funded. The Applicant also agreed not to pursue the support coordination issue. Ms Wheelehen confirmed at the hearing of this matter that the issue of the Raizer chair hoist had been resolved.
Accordingly, the single issue joined between the parties is whether the Applicant’s statement of participant supports should include provision of a seizure-alert dog (the Requested Support). However, it has become apparent, based on the evidence, that it is necessary for the Tribunal to consider the question of whether the statement of participant supports ought to include a suitably trained support animal other than a seizure-alert dog, or awake-at-night carer support.
EVIDENCE
The application was heard by the Tribunal on 1 November 2022. The parties appeared via audio-visual link.
The Tribunal was provided with a tender bundle incorporating the T-documents.[2] These included:
(a)an Assistance Animal Assessment Template completed by occupational therapist Ms Sarah Carew and dated 17 November 2020;[3]
(b)two reports from psychologist Ms Jodie Logan dated 9 December 2020 and 15 July 2021 respectively;[4]
(c)an email from Smart Pups dated 3 September 2020;[5]
(d)a Ketogenic Diet Plan for the Applicant from Healthy Lifestyles Australia (undated);[6]
(e)a submission/report from occupational therapist Ms Sarah Carew titled ‘Request for NDIA for Internal Review of Decision Re Assistance Dog Application’ dated 22 June 2021, and appendices 1-4 thereto;[7]
(f)as Appendix 2 to (e), a Dogs for Life ‘Proposal to Provide Animal-Assisted Innovative Community Participation and Empowerment (ACE) Program and Service Dog’ from the Centre for Service and Therapy Dogs Australia (CSTDA) dated 6 April 2021.[8]
[2] Exhibit R1; Transcript 9.
[3] Exhibit R1, T1A 7-82.
[4] Ibid 83-84; T4 255-265.
[5] Ibid 85-86.
[6] Ibid 87-102.
[7] Exhibit R1, T1B 108-170.
[8] Exhibit R1, TB1 139-148.
At the hearing, the Tribunal also received into evidence, by consent:
(a)a report of psychologist Ms Georgia Bennie of CSTDA (undated but said by Ms Wheelehen to have been received by her on 19 April 2022; filed with the Tribunal on 29 April 2022) (Bennie Report), accompanied by ‘Appendix A – White Paper – Evidence for Seizure Alert Dogs – The evidence for the use of specially trained Seizure Alert Dogs’ by CSTDA Principal Psychologist Dr Pree Benton (Benton White Paper);[9]
(b)a note from Ms Wheelehen and link to video footage of the Applicant experiencing a seizure (undated but note said to have been prepared by Ms Wheelehen on 29 April 2022).[10]
[9] Exhibit A1; Transcript 7, 9.
[10] Exhibit A2; Transcript 7, 9.
The Applicant did not attend the hearing. She was represented by Ms Wheelehen.
Ms Wheelehen gave oral evidence at the hearing and was cross-examined by Mr Lessing for the Respondent. She presented as an honest and candid witness and, as a parent, anxious to obtain for the Applicant any support that might assist her daughter to deal with her affliction and improve the quality of her life. She is convinced that a seizure-alert trained support dog would be such a support.
No other witnesses were called to give evidence or speak to their reports.
I acknowledge and appreciate the assistance of the Respondent’s counsel in providing copies of some of the literature referred to in the reports of the Applicant’s witnesses, which included:
(a)La Trobe University ‘Reviewing Assistance Animal Effectiveness: Literature review, provider survey, assistance animal owner interviews, health economics analysis and recommendations’ Final Report to National Disability Insurance Agency (30 September 2016) (La Trobe Report);[11]
(b)Amelie Catala et al ‘Dogs demonstrate the existence of an epileptic odour in humans’ Scientific Reports (2019) 9:4103; doi.org/10.1038/s41598-019-40721-4 (Catala Report);[12] and
(c)Ana Martos Martinez-Caja et al ‘Seizure alerting behaviours in dogs owned by people experiencing seizures’, Epilepsy & Behaviour 94 (2019), pages 104-111 (Martinez-Caja Report).[13]
[11] Exhibit R2.
[12] Exhibit R3.
[13] Exhibit R4. In the absence of the report being provided by the Applicant, counsel for the Respondent advised at the hearing he could only access an abstract of the report; Transcript 35. The Tribunal has subsequently located and been able to download the report from openaccess.sgul.ac.uk/id/eprint/110594/1/MArtinez-Caja%20Ep%20&%20Beh%202019%20Accepted.pdf.
Otherwise, following the hearing the parties filed written submissions. The Applicant’s submissions were to a large extent annotated comments on those of the Respondent; I have disregarded those passages that consisted of evidence beyond that before the Tribunal at the time of the hearing.
I have considered the relevant parts of the factual and expert evidence and refer to particular parts of the evidence later in these reasons.
ISSUE
The Tribunal was required to determine whether the requested support satisfies each criterion in section 34(1) of the NDIS Act (and any applicable Rules) and therefore a ‘reasonable and necessary’ support to be funded by the Respondent under the NDIS.
THE LEGISLATIVE SCHEME
The question before the Tribunal requires consideration of the application of the NDIS Act and several statutory instruments made under it.
National Disability Insurance Scheme Act 2013 (NDIS Act)
The objects of the NDIS Act are set out in its section 3, which states, relevantly:
3 Objects of Act
(1)The objects of this Act are to:
(a)in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008] ATS 12); and
(b)...
(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;
(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; and
(ga)protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services provided under the National Disability Insurance Scheme; and
(h)…
(i)...
(2)These objects are to be achieved by:
(a)...
(b)adopting an insurance‑based approach, informed by actuarial analysis, to the provision and funding of supports for people with disability; and
(c)...
(3)In giving effect to the objects of the Act, regard is to be had to:
(b)the need to ensure the financial sustainability of the National Disability Insurance Scheme; and
(c)...
(d)...
I accept that in construing the Act and any instruments under it, the preferred construction is one that best achieves the stated objects of the Act.
Section 4 of the NDIS Act sets out general principles guiding actions under the Act, relevantly:
4 General principles guiding actions under this Act
(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.
(6)...
(7)...
(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, to the full extent of their capacity.
(9)...
(10)People with disability should have their privacy and dignity respected.
(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.
(12)The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.
(12A)…
(13)…
(14) …
(15)…
(16)Positive personal and social development of people with disability, including children and young people, is to be promoted.
(17)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.
Section 33 identifies the matters that must be included in a participant’s plan. This includes the ‘participant’s statement of goals and aspirations’, prepared by the participant,[14] and a ‘statement of participant supports’ (SOPS), prepared by the participant and approved by the CEO.[15] The latter specifies the general supports and any ‘reasonable and necessary supports’ that will be funded under the NDIS. Section 33(2) to (7) specify matters relevant to the preparation of a SOPS, including those that the CEO must consider when approving the SOPS.
[14] National Disability Insurance Scheme Act 2013 (Cth) (’NDIS Act’) s 33(1).
[15] Ibid s 33(2).
Section 33(5) provides that in deciding whether or not to approve a SOPS, 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.
Included in these mandated considerations is the requirement in section 33(5)(c) that, in relation to the reasonable and necessary supports to be funded by the NDIS, the CEO be satisfied of all of the matters listed in section 34 in relation to each support proposed in a participant’s plan.
Section 34(1) provides that the CEO must be satisfied of all of the following in relation to each support to be funded:
(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 phrase ‘reasonable and necessary supports’ is not defined in the NDIS Act.[16] However, its meaning can be derived from the context in which it is used, especially in section 4(11) read with section 14.[17] Section 4(11) prescribes that reasonable and necessary supports for people with disability should support them to pursue their goals and maximise their independence, support them to live independently and to be included in the community as fully participating citizens, and develop and support their capacity to undertake activities that enable them to participate in the community and in employment. Section 14 empowers the NDIA to provide assistance in the form of funding to enable persons or entities to assist people with disability to realise their potential for physical, social, emotional and intellectual development, and participate in social and economic life.
[16] National Disability Insurance Agency v WRMF [2020] FCAFC 79 at [144] (‘WRMF’), and the manner it should be understood and determined at [149]-[152].
[17] McGarrigle v National Disability Insurance Agency [2017] FCA 308 (‘McGarrigle’), per Mortimer J at [41].
In McGarrigle v National Disability Insurance Agency, Mortimer J observed that:
In my opinion, the text and context of s 33(5)(c), read with s 34(1) indicates that the CEO (or the delegate or Tribunal) must either be satisfied that a support has the character of being a reasonable and necessary support, or that it does not. Once a support is identified and described (to take an example away from this case, speech therapy lessons three times a week), then the question for the CEO (or the delegate or Tribunal) is whether she or he is satisfied that support, as identified, is reasonable and necessary for that particular participant. It may be open to the CEO to be satisfied that a differently identified support is reasonable and necessary: in this example, speech therapy lessons once a week. That determination can only be made on the basis of probative evidence.[18]
[18] McGarrigle (n 17), per Mortimer J at [93].
The CEO – and the Tribunal – must be positively satisfied about each matter in section 34(1).[19]
[19] WRMF (n 16) at [201].
National Disability Insurance Scheme rules (NDIS rules)
Section 34(2) provides for National Disability Insurance Scheme rules (NDIS rules) to prescribe methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (a) to (f) of section 34(1).
Section 35(1) of the NDIS Act provides that the NDIS rules may, inter alia, prescribe methods or criteria to be applied, or matters to which the CEO must have regard, in deciding the reasonable and necessary supports that will be funded or provided under the Scheme (see also section 33(5)(d)).[20] The rules ‘supplement and inform the way the criteria in section 34 needs to be considered’.[21]
[20] McGarrigle (n 17), per Mortimer J at [43].
[21] WRMF (n 16) at [221].
Here, the relevant rules are the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Support Rules).
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Support Rules)
Rules 2.1-2.5 of the Support Rules comprise, in substance, a summary and restatement of the criteria in sections 3, 33 and 34 of the NDIS Act to which the CEO must have regard in determining whether to approve a SOPS. Rule 2.3 restates the matters to which section 34(1) of the Act directs the CEO to have regard. Rule 2.5 requires the CEO, in approving a plan, to have regard to the objects and principles of the NDIS Act, including the need to ensure the financial sustainability of the NDIS and the principles relating to plans.
Part 3 of the Support Rules (‘Assessing proposed supports’) sets out matters the CEO is required to consider with respect to the criteria specified in section 34(1)(c), (d), (e) and (f) of the NDIS Act.
Section 34(1)(c) of the NDIS Act and Rule 2.3 of the Support Rules require the CEO to be satisfied that a 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’.
Rule 3.1 sets out what the CEO must consider when deciding whether a support represents ‘value for money’.[22]
[22] NDIS Act s 34(1)(c).
In deciding that, it requires the CEO to consider, relevantly, 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) …
(e) …
(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).
Rules 3.2 and 3.3 (‘Effective and beneficial and current good practice’), as the title suggests, set out what the CEO must consider when deciding whether a support will be or likely to be effective and beneficial for a participant, having regard to current good practice.[23] Relevantly, the CEO must consider:
[23] NDIS Act s 34(1)(d); Support Rules rr 2.3(d), 3.2.
3.2In 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.
Part 5 of the Support Rules (‘General criteria for supports, and supports that will not be funded or provided’) identifies supports that will not be funded or provided under the NDIS. Rule 5.1 (‘General criteria for supports’) relevantly provides that:
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.
Operational Guidelines
The NDIA has made numerous operational guidelines for the application of the NDIS Act and Rules.
The operational guidelines represent government policy and, to the extent that they are consistent with the relevant legislation, should be applied by the Tribunal unless there is a sound reason not to do so.[24]
[24] Drake and Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 634; Madelaine and National Disability Insurance Agency [2019] AATA 4025 at [9].
Guidelines applicable at the time of the decision under review included the National Disability Insurance Scheme – Operational Guidelines – Planning (Planning Guideline).[25]
[25] Exhibit R1, T11 320-393.
There are references in some documents to an Assistance Animal Operational Guideline. The Respondent’s Statement of Issues, Facts and Contentions refers to an Including Specific Types of Supports in Plans Operational Guideline – Assistance Animals as being applicable at the time of the decision under review, but other from purporting to quote passages from that,[26] the Respondent did not produce it to the Tribunal. The operational guideline governing that subject at the time of the hearing was Assistance Animals including dog guides dated 20 June 2022 (Assistance Animals Guideline).
[26] Respondent’s Statement of Facts, Issues and Contentions dated 21 June 2022 at [39(d)], [62(a)], [66].
Any reconsideration of the decision under review considers the evidence available at the time of the hearing. As at the time of the hearing the Assistance Animals Guideline informed the approach the Respondent would take to the question of whether assistance animals are a reasonable and necessary support within the meaning of section 34(1) of the NDIS Act and Part 5 of the Support Rules and, in the absence of the guideline applicable at the time, I have taken that into account in my analysis of this application as the one that would inform any current reconsideration of the issue by the Respondent.
EVIDENCE
The Applicant’s circumstances
The material before the Tribunal reveals that the Applicant was born on 19 February 1999 and at the time of the hearing was 23 years of age. She lives in her own home, a large single-level house on a large block owned by her family, into which she moved in May 2020.[27]
[27] Exhibit R1, T1A 10, 73.
The Applicant’s medical history includes intractable epilepsy, epileptic encephalopathy, intellectual impairment, and as reported by the Applicant’s mother, an acquired brain injury.[28]
[28] Ibid 11. Ms Carew refers to the Applicant having ‘PTSD’ [Post Traumatic Stress Disorder] resulting from ‘the unpredictability of [her] seizures, and the negative impacts they have on her life’, and attributes certain consequences to it; 26-27, 29, 30, 45, 48. However, the source of this diagnosis is not identified.
It appears that the Applicant experienced her first epileptic seizure when she was only three months’ old. They occurred frequently thereafter. In 2002, at the age of 3½ years, she had a right parietal occipital resection, but seizures resumed eight months later. When nine, a vagus nerve stimulator was inserted and at 16 years a corpus callosotomy was performed.[29]
[29] Ibid 11, quoting report of Dr Christine Watson 25 October 2019; T4 255.
The Applicant has Lennox-Gastaut syndrome, a complex condition with constant and multiple types of seizure which randomly change, and include tonic-clonic, cluster seizures, tonic, gelastic, subtle tonic, and absence seizures.[30] In addition to the vagus nerve stimulator and corpus callosotomy, which reduced the number of drop seizures and risk of severe facial and head injuries, efforts to reduce the level of disability caused by the seizures and head injuries have included multiple combinations of pharmaceutical polytherapy and a Ketogenic diet. Constant seizures of multiple seizure types have caused intellectual impairment and put her at high risk of Sudden Unexpected Death in Epilepsy (SUDEP).[31]
[30] Exhibit R1, T1B 111, 255-256.
[31] Exhibit R1, T4 255-256.
When the Applicant experiences a seizure, she does not lose consciousness but remains aware. The seizures can occur at any time day or night. Sometimes she may give notice of an impending seizure by saying ‘help’ or ‘seizure’.[32] In the 18 months previous to the hearing, she had been hospitalised on three occasions. On two of those she had been intubated in the Intensive Care Unit because of status epilepticus. During status she lapses into and out of visible seizure, although she remains in a seizure and during that time is, understandably, ‘really frightened’ and may reach for Ms Wheelehen or call for her because she is frightened.[33]
[32] Transcript 10.
[33] Transcript 9-10.
In Ms Wheelehen’s words:
Some of the seizures that present of late, is a clonic type seizure that just looks like a really slow motion roll. She looks fine, but in actual fact she’s in seizure and she’s not breathing, she’s struggling to breathe, she’s alert but stuck, so her movement is very slow. This can go on for a minute, a minute and a half, and staff have definitely missed that, I’ve definitely missed that, I can be sitting beside her, and she’s had one, where she’s just rolled onto the floor slowly, just through the process of the seizure. And then she’ll have those in clusters, so she might have one then she’ll have a break, and then she’ll have another one, and a break, and it’s these clustering type seizures, that when we’re able to intercept with Midazolam, a rescue medication, then we can break them. However, in the times that Isobella has presented at the emergency department in Status,[34] we’ve not been able to intercept a night full of these seizures ongoing. And so what has happened, instead of us giving Midaz say after five of these seizures, Isobella has continued to move into Status. And then she’s required, generally, intubation and Keppra[35] and Midazolam loading whilst sedated, to try and break the seizure patterns, so it’s the ongoing cluster that is the problem. The presentation is quite different, in that most people assume that seizures present as a tonic-clonic or an absent, or, you know, there’s some generic seizures that people assume occur. Isobella’s are quite different in that, it starts as a clonic and can move into a tonic-clonic, and then she pauses, and she will verbalise as if she’s aware, however there is still underlying seizure activity, when we look on an EEG. So she does present very differently, and sometimes it can’t be picked up by people. When we review back videos we can watch the signs, and that might be that her eyes will dilate, her fingers are extended, and she slowly moves, but she’s actually stuck in a seizure.[36]
[34] Status epilepticus.
[35] Brand name for the epilepsy treatment levetiracetam.
[36] Transcript 13.
The frequency of the Applicant’s seizures varies. The ability of the assistive technology she employs to adequately detect and record such instances is discussed later, but detected and recorded instances between August 2020 and May 2021 ranged from 34 to 172 per month; this may be the time that Ms Wheelehen spoke of as having been ‘a really tough period’ of nocturnal seizures. They had decreased, replaced by ‘silent clonic seizures’.[37] Ms Wheelehen estimated that by the time of the hearing the Applicant was having between 180 to 240 seizures a month,[38] including ‘up to 20 to 30 a night’.[39]
[37] Exhibit R1, T1B 112; Transcript 14.
[38] Transcript 16.
[39] Transcript 31.
The Applicant’s condition requires frequent medical supervision. Ms Wheelehen speaks with the Applicant’s neurologist every six weeks, and the Applicant attends on a general medical practitioner monthly and has blood tests every three months. They attempt to address the Applicant’s seizures with medication, but their changing nature means that ‘we never really get ahead of those seizures’.[40]
[40] Transcript 13.
The Applicant is said to exhibit a slow and unsteady gait with a reduced stride length, that her left leg has reduced strength, her left side fatigues easily, and she has difficulties with bilateral coordination of her left and right upper limbs.[41] She is said to require supervision due to her poor balance and has difficulty navigating stairs and uneven surfaces. She has fallen, with resulting injuries, due to seizures, and experiences increased difficulties with coordination and stability post-seizure.[42] Although reports in evidence speak of her being able to walk without and not using a mobility aid,[43] there is also reference to the Applicant using a wheelchair.[44] This was unexplained, as was Ms Logan’s advice, purporting to be based on (unidentified) occupational therapy assessment reports, that the Applicant’s gait was ‘normal’ and that ‘she can run, jump, hop, ride a trike and enjoys swimming’, but is clumsier and weaker following seizures.[45]
[41] Exhibit R1, T1A 11-12.
[42] Ibid.
[43] Exhibit R1, T1A 11, 22; T4 256.
[44] Exhibit A1 2.
[45] Exbibit R1, T4 256.
In any event, it is said that the Applicant requires constant supervision for her safety, to monitor seizure behavior and poor balance and coordination. Apart from the seizures she suffers during the night, which may not always be detected, a seizure while she is standing can result in a fall and injury.
The Applicant is intellectually impaired, with significant deficits across all areas of adaptive functioning and with her receptive and expressive communication. She has fluctuating levels of memory retention, is only able to make basic, low-level, decisions, and is limited to following one-step commands or instructions. New skills are learned by frequent and consistent repetition and routine. She can recognize only a few letters of the alphabet. She can engage and attend to activities that interest her, but if she lacks that interest, engaging her can be ‘challenging’.[46] Her cognition levels, including memory, fluctuate with seizure activity. She has significant deficits in receptive and expressive communication skills, presenting as non-verbal approximately 80% of the time. She has a limited vocabulary. She will talk if interested, and mostly can be understood, but what she says may have no meaning or be out of context. She can use simple signs to communicate basic needs.[47]
[46] Exhibit R1, T1A 13.
[47] Ibid, T1A 12-13, 22-23; T1B 156-168; T4 255-256.
The Applicant is said to experience depression, anxiety, frustration, and low mood.[48]
[48] Exhibit R1, T1B156-168.
The Applicant has a history of challenging behaviors. A Positive Behavior Support Plan has been developed by Ms Logan, for ‘those times when Isobella is finding it difficult to self-regulate’.[49] The Plan was not put in evidence but, in her report of 15 July 2021, Ms Logan identified several behaviors involving the Applicant doing physical harm to herself, and physical aggression towards objects.[50] More will be said about this later.
[49] Exhibit R1, T1A 13, 83.
[50] Exhibit R1, T4 256-257.
The combination of her physical and cognitive deficits, along with the unpredictability of seizures, has limited the Applicant’s ability to live independently and her capacity to care for herself. The Applicant requires 7 days-per-week, 24 hours-per-day 1:1 ratio assistance from carers about the home (such as for showering, grooming, toileting, dressing, preparing meals and eating, managing medications, housework, and laundry and gardening) and abroad (such as for transport, shopping, community access and activities).[51]
[51] Exhibit R1, T1A 14-19; T1B 149-170.
Assistive technology
A range of assistive technology, comprising sensors, monitors and alarms, has been employed to support the Applicant, but with limited success in alerting carers to her seizures. Evidence was provided as to the efficacy of a SAMi-3 Sleep Activity Monitor, an Emfit Epilepsy Sensor Alarm, and an EpiAssist Sound and Movement Monitor.[52]
[52] Transcript 14-15.
The SAMi-3 Sleep Activity Monitor is an infra-red video camera positioned over the Applicant’s bed that detects movement consistent with a seizure and alerts carers. Events are recorded and archived.[53] It suffers the limitation of not being able to detect the full range of seizures the Applicant experiences at night notwithstanding that, according to Ms Wheelehen, it is set at its highest sensitivity.[54]
[53] Exhibit R1, T1B 111, 131.
[54] Transcript 14.
The Emfit Epilepsy Sensor Alarm is a mat-like sensor on the Applicant’s bed, intended to detect and alert carers when a seizure occurs. However, it operates by detecting physical movement and hence only prolonged tonic-clonic seizures. This makes it ineffective in waking and alerting the Applicant’s carers to many of her seizures at night.[55] According to Ms Wheelehen, the Epi-Assist Mat has ‘a failure rate of about 75 per cent, in that it doesn’t pick up all seizures … when we review the [SAMi-3 alert videos] there are usually about six or seven videos that have not registered via the Epi-Assist Mat, of seizures that have occurred during the night’. The silent clonic seizures, and even some of the tonic-clonic seizures, do not register on the Epi-Assist Mat.[56]
[55] Exhibit R1, T1B 111, 130.
[56] Transcript 14-15.
The EpiAssist Sound and Movement Monitor is said to be an adult-sized version of a baby-crib monitor but, by relying on movement, suffers the same limitations as the other movement-based monitoring devices.[57]
[57] Exhibit R1, T1B 111-112.
In any case, these devices rely on electricity and Wi-Fi, so they are ineffective if the power supply is interrupted. This has occurred on ‘many occasions’, along with battery or equipment failures that are realised only after the fact, notwithstanding a regimen of checks. They also depend on carers ensuring that the equipment is operating and them being awake to respond to the alarms.[58]
[58] Exhibit R1, T1B 111; Transcript 14-15.
Apart from seizure alert technology, the Applicant uses DoAbility breathable pillows to lessen, rather than be able to eliminate, the risk of her suffocating while in a seizure.[59]
[59] Exhibit R1, T1B 111, 135.
None of this assistive technology gives advance warning of a seizure.
Certain wearable devices may give more immediate warning of seizures by detecting changes in heart rate and other bodily activity but have not proved viable in the Applicant’s case. The Applicant is highly sensitive to certain types of touch and does not tolerate wearing things on her body, which she will remove and discard. According to Ms Wheelehen:
[W]e have been trying it now for the last 15 years when the Embrace [a smartwatch] was first released. We started practicing with pretend watches. We have a whole bundle of broken pretend watches because … she does not like those things on her body. … [E]ven a Band-Aid on her legs or arms, anything that’s unusual she’ll pick and remove. … She doesn’t like things on her arm. Yes, she’ll wear T-shirts and shorts, but she will not wear things on her arms or legs or in her hair.[60]
[60] Exhibit R1, T1B 110; Transcript 15, 19, 20: ‘Even when she was in hospital she removed her own drip lines because there was tape on her arm.’
The Applicant’s occupational therapist Ms Carew dismisses the currently used assistive technology as ‘ineffective’ and ‘unable to meet [the Applicant’s] current and future needs’.[61] Nevertheless, Ms Wheelehen would not wish this assistive technology to be relinquished as she believes that:
. . . as many pieces of equipment that we can have in place, the safer Isobella would be. … the SAMi Alert Camera, the Epi-Assist Mat, and the assistance animal trained to detect seizures would all be together, not just one item. Even … putting in place awake at night staff, people go to sleep, so, you know, I would still have those things in place, even with awake at night staff. Because the more that we have in place, the more that we perhaps, have an overlap, and we can protect Isobella.[62]
[61] Exhibit R1, T1B 111-112.
[62] Transcript 15.
Other supports
Ms Wheelehen manages the Applicant’s NDIS plan.
The Applicant has a team of seven support staff whom Ms Wheelehen has trained and organises. She says that the support staff ‘are very engaged in’ the Applicant’s life and there is always somebody present, but none of them are constant in her home and, although Ms Wheelehen has trained them to ‘continually reinforce that you’re there, that [the Applicant’s] safe’, ‘no two people provide the same response to seizures in terms of comfort and support’.[63]
Isobella when she was younger, she used to be able to say to me, “Seizure’s coming.” And I would then respond, “Sit down,” and she would sit where she was and then I’d go to her. Her ability to be able to verbalise that to me and for me to respond in that period of time would make her feel safe. And then I would just continually say over and over, “It’s okay, mum’s here. It will go soon,” and seizures would go. We found that when Isobella had new support staff that didn’t know her, that didn’t respond in exactly that same way as me, we would see a longer seizure period because the anxiety or the panic of the seizure would actually extend out that seizure. So that if there are only small snippets of information that she can hear and absorb, that hopefully she will. In my mind, if we had a dog that gave an alert in a really short period, then we have that opportunity to get to her and support her, or the dog would be there to support her.[64]
[63] Transcript 10.
[64] Ibid 21.
At present, the carers, while present overnight, are not rostered to stay awake overnight, but funded for ‘sleepover shifts’.[65] Apart, presumably, from visual checks, they rely on sensors, monitors and alarms to alert them to seizures while the Applicant is in bed. It is this consideration that gives rise to Ms Wheelehen’s contention that, in the absence of a seizure-alert animal, funding would be required for 24/7, 1:1 awake carer support.[66]
[65] Ibid 19.
[66] Ibid 39-41.
Although it had been referred to earlier, it was only at the end of the hearing, after both parties had closed their cases, that 24/7, 1:1 awake carer support was firmly advanced on behalf of the Applicant as a necessary alternative to an assistance animal, her case having been run on the basis that the matter in issue was the need for an assistance animal. Accordingly, what such support might entail, and other factors relevant to its reasonableness and necessity, was not the subject of evidence or submissions. After some discussion on the point, it was decided that, rather than have the hearing reopened for further evidence to be acquired, the Tribunal would decide the question of whether a suitable assistance animal ought to be funded and, if that were not the case, leave the question of alternative supports to a reassessment of the Applicant’s plan.[67]
[67] Ibid 40-41.
Case for the requested support
In a NDIS ‘Assistance Animal Assessment Template’ submitted to the Respondent dated 17 November 2020,[68] Ms Carew argued in favour of the Applicant having an ‘assistance animal’. Although framed in terms of the benefits of a suitably trained assistance dog in general, she also expressed her views on the benefits of it being a ‘medical alert dog’ with the ability to detect epileptic seizures. Ms Carew submitted, in essence, that a seizure-alert assistance dog would help the Applicant with:
[68] Exhibit R1, T1A 7-82.
(a)Her balance issues resulting from Lennox Gastaut Syndrome and her acquired brain injury;
(b)Her propensity for falls resulting from her left-sided weakness, Lennox Gastaut syndrome and her epilepsy;
(c)Her other mobility issues, including issues with gait, slow speed of walking unassisted, unsteady movement and motivation to mobilise;
(d)Her difficulties with activities of daily living resulting from left-sided weakness, balance issues, limited motivation, emotional regulation and Post Traumatic Stress Disorder (PTSD);
(e)Her symptoms of PTSD, especially in mitigating her fear, anxiety and stress;
(f)Her issues around safety and feelings of being unsafe, especially in community spaces;
(g)Her communication issues, difficulties with and motivation to verbalise;
(h)Her emotional regulation and confidence issues; and,
(i)Her fear, anxiety, stress and negative responses to the unpredictability of her multiple seizures pre-, during, and post-seizure.[69]
[69] Exhibit R1, T1A 56.
On 3 September 2020 Smart Pups sent a letter of offer to Ms Wheelehen for a place on the Smart Pups Program in relation to a seizure-alert dog. It advised that the cost would entail a minimum donation of $20,000.00 with an expected timeline of 18 to 24 months.[70] The email referring to the letter of offer also referred to an ‘Information Sheet’, and ‘Terms and Conditions of Placement’, but none of these documents were before the Tribunal and no further information was provided regarding the Smart Pups Program.
[70] Ibid 85.
In her report dated 9 December 2020, psychologist Ms Logan noted that a functional behaviour assessment identified that the Applicant ‘has engaged/engages in behavioural escalations that can escalate rapidly’ and that she ‘experiences difficulties with self-regulation and requires supports to regulate her emotions at times’.[71] A Positive Behaviour Support Plan had been developed and implemented, with strategies and approaches to instances of the Applicant having difficulty in self-regulation including ‘supporting co-regulation, using deep breathing, and identifying emotions’.[72]
[71] Ibid 83.
[72] Ibid.
Ms Logan then went on to say that:
Animal-assisted therapy may provide additional supports to reduce stress and anxiety in those situations when Isobella is experiencing a situation and/or event that is stress provoking and leads to difficulties in her self-regulating independently. Animal-assisted therapy may provide additional supports to Isobella’s [sic] at these times and may reduce the frequency and intensity of behavioural escalations. Further to this, Isobella will experience an improved quality of life resulting from her ability to co-regulate with animal assistance. [emphasis added][73]
She recommended ‘that Isobella is supported to access an Assistance Dog via her NDIS funding’.[74]
[73] Ibid.
[74] Ibid 84.
On 6 April 2021, Dr Bree Benton, principal psychologist at CSTDA, reported in relation to a prospective ‘ACE Program’, which she described as an animal-assisted psychosocial program aiming ‘to enhance Isobella’s empowerment and personal goal attainment’ with ‘partnership of an appropriate Assistance Dog’.[75] The length of the program would be 20 months, with ‘handover’ of a certified and trained assistance dog occurring at 16-20 months. The overall cost of the program would be $62,000.00 (or $57,000.00 if funded up front) with $42,000.00 of that amount relating to the handover stage (including the costs of the assistance animal).[76] Dr Benton considered that the program should, in the long-term, reduce the need for interventions from health professionals such as psychologists, occupational therapists, and social workers, and the number of support hours the Applicant requires to attain her goals.[77]
[75] Exhibit R1, T1B 139.
[76] Ibid 143-144.
[77] Ibid 139.
Dr Benton reported that an initial assessment had been undertaken on 26 March 2021, which considered the Applicant and her ‘support team’ were suitable candidates for the program. She outlined the Applicant’s goals and described the role of the assistance dog in meeting those goals. These included several seizure identification-related tasks.[78]
[78] Ibid 139-142.
On 22 June 2021, Ms Carew provided a further report, headed ‘Request to NDIA for Internal Review of Decision Re Assistance Dog Application’ which, inter alia, annexed a copy of Dr Benton’s report.[79] In addition to reviewing the Applicant’s situation and needs, and the limitations of current assistive technology and carer supervision, Ms Carew reported that for the previous six months the Applicant had undergone a trial with an assistance dog as part of the ACE program, and had demonstrated the following:
[79] Ibid 108-170.
(a)She was extremely responsive to the assistance dog and the assistance dog was exceptionally responsive to her;
(b)She interacted well with the assistance dog;
(c)She was capable of learning to manage the assistance dog;
(d)She had learned both verbal and signed communication skills and used these effectively with the assistance dog and her mother’s dog Max;
(e)Her verbalisations had increased, especially in the presence of the assistance dog;
(f)She was more motivated to undertake a range of tasks and activities, especially with the assistance dog;
(g)She was more compliant in undertaking a range of tasks and activities, especially in the presence of the assistance dog;
(h)Her active participation in physical activities had increased as a direct result of interacting with the assistance dog, and when practising her learned skills with Max;
(i)She demonstrated enthusiasm to go out in the car into the community;
(j)Her mobility was much better balanced and secure with assistance from the assistance dog in the form of bracing;
(k)She was motivated and engaged to interact with the assistance dog;
(l)Her negative sensory sensitivities were reduced when interacting with the assistance dog;
(m)She was calmer and more responsive during and after seizures when the assistance dog was present, and
(n)Her assertiveness, choice and independence had increased as a direct result of training with the assistance dog and then practising her skills with Max.[80]
[80] Ibid 118.
Ms Carew said that during ACE program commencement training, Dogs for Life would match an appropriate assistance dog for the Applicant which has been bred ‘to scent’. It could therefore be trained to detect and alert in response to her specific seizure odours as well as perform a range of tasks specific to her other disabilities and needs.[81]
[81] Ibid.
Ms Carew’s report also included, as Appendix 3, ‘Bella’s daily routine’, a table detailing the Applicant’s morning, day, evening and overnight routines, how she performs them, and how an assistance dog would benefit her.[82] The majority of the benefits – such as less continuous direct supervision by support staff and greater privacy – are predicated on the assistance dog being a seizure-alert animal; others – such as enabling (through companionship, confidence, and motivation inspired by involvement with the animal) greater physical activity and social participation, and comfort when unwell before, during and after a seizure – might be available from a suitably trained assistance animal.
[82] Exhibit R1, T1B Appendix 3 149-155.
Ms Carew’s report lists the Applicant’s functional deficits as:
(a)reduced balance;
(b)poor mobility (with reluctance to engage in physical activity;
(c)risk of falls;
(d)sensory disturbances ‘(less seeking, low registration)’;[83]
[83] This is detailed in Appendix 4 to the report as, essentially, the Applicant’s sensory sensitivity that makes her intolerant to wearing articles on her body, and her need for a ‘high level of sensory input in order to respond’, resulting in her being ‘often disinterested in daily activities’: see Exhibit R1 158-159.
(e)poor communication and reluctance to verbalise;
(f)lack of motivation and engagement;
(g)mental health issues including low mood, depression, lack of confidence, anxiety;
(h)reduced ‘Quality of Life’;
(i)high seizure activity secondary to Acquired Brain Injury;
(j)a range of sleep issues;
(k)lack of privacy and dignity;
(l)lack of independence, choice, decision-making and control;
(m)lack of positive risk experiences;
(n)at high risk for SUDEP.[84]
[84] Exhibit R1, T1B 120.
In Appendix 4 to that report, ‘Bella’s functional capacity and AD benefits’,[85] Ms Carew addresses the implications and what she asserts will be the benefits to the Applicant of an assistance dog. Leaving aside whether some of these (such as reduced quality of life and lack of privacy and dignity are, strictly speaking, ‘functional limitations’ rather than the consequences of functional limitations), the majority of the benefits are again predicated upon the assistance dog having seizure alert capability.
[85] Exhibit R1, T1B Appendix 4 156-170.
On 15 July 2021,[86] Ms Logan provided a further report on the Applicant, including the results of a Vineland-3 adaptive behaviour assessment.[87] She noted the Applicant presented with intellectual disability, acquired brain injury, Lennox Gastaut syndrome and intractable epilepsy. She said the Applicant relied on high-level 1:1 supports to ensure her safety and wellbeing regarding personal care needs, medical needs, and personal safety, at all times.
[86] Exhibit R1, T4 255-265.
[87] Ibid 259-260.
Ms Logan noted the Applicant’s Positive Behaviour Management Plan and identified areas of concern as being:
(a)Physical harm to herself, including walking out onto a busy road, not moving out of the sun (which increases the risk of seizure), skin-picking and touching faeces; and
(b)Physical aggression towards objects, including pushing breakable items off the table and throwing items/objects.[88]
[88] Ibid 256-257.
Ms Logan was supportive of an assistance dog being provided, noting that it would allow the Applicant at times to remain out of direct supervision and that it ‘could support the development of Isobella’s emotional regulation skills’. Ms Logan considered that an assistance dog would:
(a)Provide support staff with a differentiation between seizure activity and behaviour incidents that will allow for strategies within the Positive Behaviour Support Plan to be implemented appropriately;
(b)Provide sensory input (touch);
(c)Provide companionship (affection and friendship);
(d)Provide distraction and redirection opportunities at those times Isabella is presenting with pre-cursor behaviours to an escalation which will support the development of self-regulation skills and capacity;
(e)Provide supports to increase engagement in preferred activities such as utilising the outdoors to engage with the assistance dog, playing games, and companionship when completing activities of daily living; and
(f)Increase independence, privacy, dignity, and autonomy within the home (which may support a reduction in behaviours of harm).[89]
[89] Ibid 265.
The Bennie Report, undated but received by Ms Wheelehen on 19 April 2022, notes the Applicant’s participation in the ACE program on a fortnightly basis since 26 May 2021 with two therapy – not assistance – dogs named Pluto and Kirby. Ms Bennie distinguishes a therapy dog as one used by many different participants, and a service/assistance dog as one specifically trained to work with a single participant.[90] The Bennie Report identified the following tasks that Ms Bennie suggested will be performed by an assistance animal:
(a)Sensing a seizure prior to its occurrence and providing an alert to the Applicant and, if necessary, her support team;[91]
(b)Providing a grounding point and assisting with recovery from a seizure;[92]
(c)Having public access rights, which will allow it to perform alerting tasks, provide motivation to engage with others (through being a talking point), and avoiding the need for a support worker to be present at all times;[93] and
(d)Assist with navigating and preventing unsafe situations.[94]
[90] Exhibit A1, 1.
[91] Ibid 4.
[92] Ibid 6.
[93] Exhibit A1, 6.
[94] Ibid 7.
In summary, and as submitted at the hearing, the putative benefits that it is claimed will be delivered by a medical alert animal, capable of epileptic seizure alert, seem to fall into three broad categories:
(a)Seizure detection and related benefits (such as reduced direct supervision, increased sense of security and autonomy);
(b)Physical and safety assistance; and
(c)Comfort and motivational assistance including providing opportunities for caring for and training/interacting with the animal.
Experience with animals
The Applicant’s ability to interact with dogs is plainly material to whether an assistance dog is a reasonable support.
Ms Wheelehen spoke of her and the Applicant previously having dogs as pets. Ms Wheelehen’s dog, Max, was trained quite some time ago as a therapy assistance animal, so an intelligent dog that responds to people via verbal and physical cues. The Applicant engages very well with him when she visits. However, he is a large and boisterous animal with skills and training unsuited to what the Applicant requires – for example, his ‘reward system’ is ball-play rather than food or a clicker, and he has not been able to be trained ’to walk gently on the lead with her and things like that’.[95]
[95] Transcript 11, 20.
In the absence of the NDIA funding one, Ms Wheelehen had raised significant, but still inadequate, funds for a seizure-alert dog. That has enabled the Applicant to participate in the CSTDA ACE program.[96] The Applicant’s ability and inclination to engage well with therapy dogs appears to have been confirmed through her experience in program. They had been working with a number of different animals for more than a year and the Applicant interacts one-on-one with the animals and with Ms Bennie. She has learned skills to control and command a dog, has taken a dog out into the community, and has displayed more confidence when out in the community.[97]
[96] Transcript 9.
[97] Ibid.
The Applicant’s sensitivity and intolerance towards wearing assistive technology, jewellery and certain physical contact is a relevant factor to consider, not only for her but for an assistance animal’s wellbeing: some physical contact with an assistance dog will be necessary should she have one. The Applicant seems to be able to tolerate contact with – including being licked by – dogs such as Max and the two dogs from CSTDA she has been working with. Ms Wheelehen ascribes this to familiarity and an element of the Applicant being in ‘control’.[98]
[98] Ibid 20.
Benefits of a support animal
Ms Wheelehen saw the benefit of an assistance dog as two-fold. Although the skill of being a seizure detecting dog would be important, she has observed that the Applicant gets considerable value from a non-seizure-alert dog. It supports the Applicant to ‘feel confident in a number of different environments [and] for her to engage in her own life more and to actually engage in the life of another being, such as an animal’.[99] Accordingly, in Ms Wheelehen’s view, ‘the training for the alert dog is important but the last 18 months has definitely taught me more that it’s the feeling of safety and security that the animal brings that I am seeing Isobella responding to now’.[100]
[99] Ibid 11.
[100] Ibid.
In the past 18 months, the Applicant was choosing to go out less. She would travel in a car but not alight at destinations or would announce that she wanted to go home. Ms Wheelehen attributes this to the Applicant being ‘fearful’ and feeling ‘unsafe’.[101] However, when the Applicant goes out into the community with Ms Bennie, her support worker, and the assistance dog, the Applicant seems to focus on the animal. She is ‘invested in supporting the animal in different environments and we have seen 100 per cent success of getting out of the car and actually engaging in the community and the activities’. Ms Wheelehen has attributed this to the Applicant having a ‘sense of safety’ with dog and her confidence improving.[102]
[101] Ibid 9-10.
[102] Ibid 10.
Ms Wheelehen has also observed the animal give the Applicant a ‘sense of purpose’ when it is at her house. The Applicant has a bowl for water and for food, and engages in welfare activities for the animal in a way that is not observed in other activities.[103]
[103] Ibid.
Accordingly, aside from the benefits of an assistance dog that could detect prospective seizures, Ms Wheelehen saw value in the Applicant having a suitably trained assistance dog as a companion and support for her, as being more skilled, intuitive and responsive than a mere companion animal.[104] The mutual engagement that has been observed between the Applicant and an assistance animal with proper training has been of a superior quality.
[104] Ibid 22.
Ms Wheelehen’s observations are consistent with those in the Bennie Report, which advises that the Applicant had:
(a)demonstrated improved confidence and motivation to explore new places, evidenced by her being willing to leave the security of the car in which she was being transported, and entering different parks, a shopping centre, café and grocery store, and to leave her wheelchair to play with the animal;[105]
(b)shown increased willingness, at least when an assistance dog was present, to be in social settings and engage with other people in circumstances where she had previously lost interest: such as by commenting on statements made by Dr Bennie and a support worker, replying to questions, maintaining and switching eye contact, smiling and nodding in response and agreement, and responding more immediately than was usual;[106]
(c)demonstrated improved use of verbal and non-verbal communication, through communicating with the assistance dog physically through hand signals, patting and offering treats, and verbally through commands and praise;[107]
(d)shown an ability to reinforce the assistance dog’s training through giving commands and following through by rewarding the dog with praise and treats, and generally bonding with the animal;[108]
(e)improved opportunities for social inclusion and confidence, with members of the public approaching the Applicant and asking her questions and positively commenting when she is working with the assistance dog;[109]
(f)improved general mood after sessions with an assistance dog.[110]
[105] Exhibit A1, 1-2.
[106] Ibid 2.
[107] Ibid 2-3.
[108] Ibid 3.
[109] Ibid.
[110] Ibid.
The benefits that Ms Wheelehen had seen for the Applicant so far have been with a non-seizure alert, but a sufficiently disciplined and trained, dog.
The training that the Applicant has been doing had focussed on whether she was a suitable candidate for an assistance animal, observing her interaction with animals and their responses, and how she and they behave in the community. Ms Wheelehen considers that so far they have not explored the full extent of what the animal could be trained to do for the Applicant. She considered that with training an assistance dog could encourage the Applicant to go for walks with the dog, and assist with her safety, like pause her at roads. A dog may encourage her to stay within her ‘home space’ and, if she starts to ‘wander off’, ‘come back to where she’s meant to be’. It could be trained to support her ‘to engage more in her community and in her home, and in her own life’ and, so build her independence.[111]
[111] Transcript 12.
Ms Wheelehen hoped that a properly trained assistance animal would be able to provide the Applicant with more opportunity to be independent in her life. Presently, ‘she has a person with her virtually shadowing 24/7’. Even during toileting, a carer is present to respond in case of a seizure. This, understandably, makes the Applicant uncomfortable and she puts off going to the toilet. Ms Wheelehen considers an assistance animal could be trained to bark for help if the Applicant needed assistance, providing her with privacy, preserving her dignity, and improving her quality of life.[112] By way of further example, Ms Wheelehen considered that, instead of carers having to accompany her rather than be within call nearby, an assistance dog could go with the Applicant outside to hang up her washing.
[112] When Ms Wheelehen is with the Applicant, she can ‘stand around the corner’ and talk to her and intervene when the Applicant asks for help. The carers have a different duty of care and are obliged to be present and watch for when the Applicant needs help: Transcript 12. She has tried to train carers to reflect the same practices, ‘but they’re a group of independents. We have tried that, they don’t feel confident with doing that at this stage, I guess because there is always that concern that if she does hurt herself, and they become responsible’: Transcript 13.
Ms Wheelehen hopes that a trained seizure-alert dog would be able to detect seizures in advance of them occurring, so that in so far as possible measures could be taken to lessen their impact on the Applicant. This might be by the Applicant being able to take some protective action (such as sitting or lying down in a safe place) or carers being ready to assist the Applicant such as by getting her to a safe place, preparing to administer medication, and the like.[113]
[113] Transcript 16.
In Ms Wheelehen’s view, a trained seizure-alert animal can sense an impending seizure up to 20 minutes in advance. In her opinion, even ‘20 seconds’ notice would suffice, so someone could be aware that the Applicant may need help, and the Applicant would feel comforted and safer knowing someone is being alerted to her need for help.[114]
[114] Ibid.
Based on her own research, including speaking to families, Ms Wheelehen considered that a seizure-alert dog could detect a seizure up to 30 minutes, down to a few minutes, in advance. She had been communicating with a family in Toowoomba whose son is in a similar situation to the Applicant, in that he lives independently, and experiences multiple seizures. He has a seizure-alert dog funded through a ‘funding organisation’ – which I take to be other than the NDIA – trained specifically for him, which is able to alert the family within a five-minute timeframe of all seizures, with ‘virtually 100 per cent success’.[115]
[115] Ibid 17.
Such an animal would also assist in discerning whether the Applicant’s behaviour, such as her reluctance to leave a vehicle or engage with staff, was due to an impending seizure or some other reason she was unable to adequately communicate. This would assist support staff to determine how best to respond and assist her.[116]
[116] Ibid 16.
These objectives are supported by Ms Carew. In the Assistance Animal Assessment Template she prepared, referring to literature she had read on the subject, Ms Carew asserts that:
alert dogs are specifically trained [to detect an impending seizure and ensure their subject’s safety when they occur] with a significantly high success rate, and to alert carers of impending seizures up to 60 minutes before their onset.[117]
and
Recent research has conclusively demonstrated that specially trained dogs are able 100% of the time, to detect and discriminate the specific odour signature of their owner’s seizures (Catala et al., 2019) … [and can] “anticipate oncoming crises within minutes to hours before” an episode.[118]
and
… Martinez-Caja et al (2019), convincingly demonstrated alerting behaviour changes in their assistance dogs prior to the occurrence of seizures. In fact, they found that the alerting behaviours of the assistance dogs occurred in response to the presence of preictal symptoms. Preictal or prodrome is the period of time from minutes to even days before a seizure occurs.[119]
[117] Exhibit R1, T1A 33-34.
[118] Ibid 49-50.
[119] Ibid 50.
In her report of 22 June 2021, she submits that
ADs [assistance dogs] specially trained in seizure detecting and alerting are 100% accurate and effective in detecting, discriminating and alerting to the specific odour signature of their owner’s seizures within minutes or even up to hours before a seizure occurs. This assistive technology and carers have been unable to do, but an AD will eliminate by being able to detect and alert to 100% of Bella’s seizures, prior to their occurrence, enabling Bella to get timely assistance and thus preventing rapid escalation of her symptoms. [120]
[120] Ibid 115.
The two reports from CSTDA expand on the benefits to the Applicant of a seizure-alert dog being able to detect and warn of impending seizures.
The first makes no claim as to how long in advance a dog might detect a seizure, or the level of success that one might expect.
In the second, Ms Bennie advises that:
The type of seizures the dogs are trained to detect is assessed on a case by case basis, based on the safety risk each seizure poses. Seizures that pose the greatest safety risk are considered a priority for the dog to learn. This is to ensure the dog’s capacity to detect is high and to avoid confusion or strain on the dog … The seizure alert dog’s [sic] learn to distinguish the different seizure activity from careful observations of behaviours, different scent, tastes (i.e. licking), deportments, and timing of rewards from supporting staff. It is not guaranteed that the seizure alert dog will be successful, as are all other modalities of support (i.e. psychological therapy, medications etc.) however, the probability is greatly increased with support, dedication and cooperation from the participants support team, consistent seizure activity (more than 1 seizure per every 2 weeks is a main criteria for applying for a seizure alert dog) and a well-formed relationship/bond between the participant and their dog. As such, Isobella’s support team has demonstrated dedication, cooperation and desire to assist Isobella with the assistance dog throughout the ACE program thus far. Isobella has also demonstrated desire and persistence to connect with the assistance dog in her own capacity and without prompting.[121]
[121] Exhibit A1 10-11.
The appendix to that report, the Benton White Paper, is said to be ‘an additional literature review to that provided in La Trobe University’s report to the NDIS “Reviewing Assistance Animal Effectiveness”’ and to ‘more specifically summarise the peer-reviewed evidence in support of seizure alert dogs’. It refers to some of the literature on the subject that ‘suggests that dogs can be specially trained to recognise changes preceding a seizure and give a warning to their owner.’’[122]
[122] Ibid 12.
It acknowledges that:
There is currently no gold standard evidence for the use of seizure-alert dogs due to the scarcity of research in this area, issues within study designs (articles are mostly case studies or correlational, rather than experimental) small sample sizes, and reliance on patient report rather than objective measurement (all of which reduce reliability and validity).[123]
Nevertheless, it is argued that
despite the lack of evidence that attests their utility … examples demonstrate that in spite of a lack of gold standard research, properly trained dogs can provide specialised assistance to those in need.[124]
[123] Ibid.
[124] Ibid.
In reviewing literature as to the accuracy of detection and alerting, Dr Benton advises:
Both Kirton et al. (2008) and Lyons et al. (2014) reported no false positives in alerting. Lyons et al. (2014) reported 100% accuracy in picking up on seizures, which was supported by EEG data. Kirton et al. (2008) reported 85% of the studied SAD’s [sic] picked up on their owners’ seizures. Kirton et al. (2004) reported 85% sensitivity in detecting seizures, stating that all alerting behaviours observed during the study preceded seizures. SAD’s [sic] have been reported to alert impending seizures up to 50 minutes prior (Burton, 2017), and even up to 5 hours prior to a seizure (Kirton et al., 2004). Having the buffer between the SADs alert and the seizure allows greater independence and safety, thus enabling owners to participate in life with greater ease, requiring less avoidance of activities or leaving the house in general. In some cases, owners have been able to take anti-seizure medication as a result of being alerted, avoiding the seizure altogether (Kirton et al., 2008).[125]
[125] Ibid 14.
It was put to Ms Wheelehen that seizure-alert animals might detect impending seizures minutes or even up to hours or days beforehand, but a days’ notice was not going to be much help. Ms Wheelehen advised that she ‘would hope that it’s just within a minute that an animal can sense those physiological changes, and, you know, I would perceive that’s possibly more accurate in this situation’.[126]
In my mind, if we had a dog that gave an alert in a really short period, then we have that opportunity to get to her and support her, or the dog would be there to support her.[127]
[126] Transcript 17.
[127] Transcript 21.
However, Ms Wheelehen has been given no indication as to how long before a seizure a dog may alert someone to the fact that a seizure may be coming.[128] In her understanding, it ‘would come down to identifying a potentially suitable animal and then assessing their response time’ and, based on what she was told by an experienced trainer at CSTDA, ‘if the animal was not responding in the appropriate response time then we would find another animal to ensure we do get that appropriate response time’. To date there had been no attempt by the CSTDA to assess the Applicant regarding exactly what signs she presents that a dog could respond to.[129]
The efficacy of epilepsy seizure-alert dogs
[128] Transcript 21.
[129] Ibid 20-21.
The authors of the reports upon which Ms Wheelehen relies did not give evidence. Accordingly, it was not possible to obtain confirmation or clarification of the contents of their reports, or of the professional literature they refer to in their reports and upon which they appear to rely but which was not produced in evidence. The Tribunal appreciates the efforts of the Respondent’s legal representatives in attempting to locate, and in providing to the Tribunal, some of that literature.
The issue of assistance animals, specifically seizure-alert dogs, was extensively considered by the Tribunal in QTBR and National Disability Insurance Agency (QTBR).[130] It is not binding authority upon me but there are features in common with this case, such as the benefits sought from such an animal, and it considers the applicable Rules, Guidelines and specialist literature. Although I have considered these myself, I am indebted to that review and analysis, with which I respectfully agree.
[130] [2021] AATA 1951, at [161]-[202] (‘QTBR’).
In particular, the Tribunal in QTBR considered the La Trobe Report, a report by researchers from La Trobe University, who reviewed the effectiveness and cost-benefits of assistance animals to enable decisions regarding provision of assistance animals to be based on the latest available scientific evidence.[131] The Tribunal in QTBR also considered subsequent literature, as well as evidence it heard from relevant experts, including the Chief Executive Officer of CTSDA. As noted by the Tribunal:
In summary, the La Trobe Report noted that ‘there is currently no robust evidence in the literature attesting to the general effectiveness’ of assistance animals as a support for people with disability. Eleven studies were identified which have examined the effectiveness of seizure alert dogs and, while they ‘generally suggest that these animals can be effective at alerting or response behaviours’, most of these are based on surveys or interviews with the person experiencing seizures. Some studies generally found a high level of reliability in ‘alerting/responding’, but there were exceptions. For example, two studies showed no effect, while another suggested that the assistance animal induced seizure-like activity. Additionally, a study reporting two cases of individuals presenting to a hospital with a seizure alert dog showed no benefit of the dog in the clinical setting. Other identified studies examined the effect of the animal on outcomes separate to responding to an epileptic seizure. A study of 10 dogs demonstrated ‘nearly all owners’ experiencing a reduction in seizure frequency; only one showed no improvement. A survey of 22 owners saw half suggesting their seizures occurred less frequently, were less intense and shorter. In conclusion, the La Trobe Report noted the limitations of the research in this area and concluded that the sample sizes are usually small and have a ‘heavy reliance on owner reports instead of objective measures’. In this regard, as stated in the La Trobe Report, while generally positive, ‘the existing evidence base is weak’ and that the ‘limitations of existing research make it difficult to draw clear conclusions about their effectiveness’. Accordingly, the current state of this evidence regarding assistance animals and epilepsy, as summarised in the La Trobe Report, is insufficient for the Tribunal to find that such a support is likely to be effective and beneficial for QTBR as required under subsection 34(1)(d) of the NDIS Act. In this regard, and noting the Operational Guideline on planning, there is no evidence from a sufficient number of qualified experts of positive outcomes in a sufficient number of people; emerging signs of positive outcomes is insufficient. As a result, the Tribunal is not satisfied that the support of an assistance animal, in the form of a seizure alert dog, will be effective for QTBR because it cannot be found on current evidence that this will have a definite or the desired effect. [132]
(footnotes omitted; emphasis added)
[131] Exhibit R2, ‘Reviewing Assistance Animal Effectiveness’, La Trobe University (30 September 2016); QTBR (n 130), at [169].
[132] QTBR (n 130) at [170].
The Tribunal in QTBR concluded that:
(a)The published and refereed literature referred to in the proceeding, including the La Trobe Report, indicated there was ‘insufficient published and refereed evidence at this time to support the use of epilepsy seizure dogs as an effective and reliable disability support’;[133]
[133] Ibid at [180].
(b)There was no evidence that a seizure-alert dog can reliably detect a seizure every time and the evidence indicated the applicant QTBR was at risk of dying from a seizure that may not be detected;[134]
[134] Ibid.
(c)The applicant QTBR’s lived experience, which included a 3-hour trial to determine QTBR’s suitability for an assistance animal, was not sufficient to conclude that the proposed assistance dog would be, or was likely to be, effective and beneficial;[135]
[135] Ibid at [185].
(d)The expert evidence was ‘inconclusive’ regarding the proposed seizure-alert dog for QTBR, which accorded with the state of the scientific evidence published;[136]
[136] Ibid at [198].
(e)The CEO of CTSDA gave evidence to the effect that:
(i)He was unable to say that seizure-alert dog would be completely reliable;
(ii)He was unable to provide the Tribunal with the rate of seizure detection by seizure-alert dogs CTSDA had trained;
(iii)He was unable to say how many of the 35 seizure-alerting dogs CTSDA had placed worldwide were epileptic seizure dogs compared with non-epileptic seizure-alert dogs and their reliability in this regard;
(iv)He conceded that he could not say that a seizure-alert dog would be likely to work for QTBR;
(v)Because QTBR was a child, and seizure-alert dogs could not be placed with her until she was 13 or 14 years old, notwithstanding the two years of training associated with a seizure alert dog trained by CTSDA and the parallel training required by a participant, it would be at least five years until QTBR could be provided with a seizure-alert dog.[137]
(f)The case of TYKL and National Disability Insurance Agency (TYKL),[138] in which the Tribunal found in favour of the Respondent funding an assistance animal, was distinguishable in that:
(i)It was in relation to an assistance dog, not a seizure-alert dog, to replace one that had died;
(ii)There were identifiable benefits to that applicant in her specific circumstances for the previous assistance animal, including for her activities of daily living, and a suitable dog had already been selected by the relevant training organisation;
(iii)The Respondent in TYKL accepted that the assistance animal will be, or is likely to be, effective and beneficial.[139]
[137] Ibid at [194]-[195].
[138] [2021] AATA 135.
[139] QTBR (n 130), at [199].
As Ms Carew notes, there has been some further research undertaken since the La Trobe Report (some of which was considered by the Tribunal in QTBR). She particularly cites the 2019 Catala Report for the proposition that assistance dogs ‘specially trained in seizure detecting and alerting are 100% accurate and effective in detecting, discriminating and alerting to the specific odour signature of their owner’s seizures within minutes or even up to hours before a seizure occurs’.[140] However, this does not accurately reflect the findings of that study.
[140] Exhibit R1, T1B 155; Exhibit R3.
The Catala study was to explore whether there is a specific epileptic ‘seizure odour’ and whether trained dogs might be able to discriminate the seizure odour from odours of the same patient outside of seizures – not whether the dogs were able to detect impending seizures. On the contrary, the authors of the report emphasise:
As we focussed on ictal odour and not on pre-ictal, we did not make assumptions on seizure-alerting abilities of dogs, or on the timing of such anticipation, in this study.[141]
[141] Exhibit R3, 2.
Only five animals were studied, with each dog being involved in nine trials. While the authors concluded that all dogs succeeded in each trial, only three performed at 100% sensitivity and specificity; the two others displayed 67% sensitivity,[142] and 95% specificity – creditable results,[143] but short of what Ms Carew claims.[144] The authors concluded that this ‘clearly demonstrates for the first time that there is indeed a seizure-specific odour across individuals and types of seizures’, but say it is only ‘a first step towards identifying a seizure-specific odour’[145] and, moreover, point out ‘nothing is known about the potential pre-ictal presence of an odour, which would be important to help patients anticipate and seek security before a seizure occurs.’[146]
[142] Proportion of actual ‘positives’ that were correctly identified; ibid 2.
[143] Proportion of actual ‘negatives’ (i.e. no response behaviour on a non-epilepsy sample); ibid 2.
[144] Exhibit R3, 2.
[145] Exhibit R3, 3.
[146] Exhibit R3, 4.
In the circumstances, and given the insufficiency of evidence to be confident of the efficacy of the proposed support and the benefits which are likely to be achieved for the Applicant, the Tribunal is not satisfied that the requested support satisfies rule 3.1(a), (b), (c) and (f), and represents value for money as required by section 34(1)(c).
Section 34(1)(d): Will the requested support be, or is it likely to be, effective and beneficial for the participant, having regard to current good practice?
Effectiveness and benefit
Rule 3.2 of the Rules provides:
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.
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 take into account, and if necessary seek, expert opinion.
The Planning Guideline provides, at 10.6:
The NDIS Act does not define ‘effective' or ‘beneficial' but they are ordinary words that should be given their ordinary meaning (i.e. effective meaning having a definite or desired effect; efficient and beneficial meaning advantageous; having benefits; improving the health) (see McCutcheon and NDIA [2015] AATA 624 at [34]) (external).
The term ‘current good practice' means a practice which, even if not widely used, is recognised by sufficient numbers of practitioners as being based on sound evidence (see TKCW and NDIA [2014] AATA 501 at [70]) (external).
When deciding whether a support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice, the NDIA must consider the available evidence of the effectiveness of the support for others in like circumstances.
This evidence may include:
·published and refereed literature and any consensus of expert opinion (rule 3.2(a) of the Supports for Participants Rules);
·the lived experience of the participant or their carers (rule 3.2(b) of the Supports for Participants Rules); or
·anything the NDIA has learnt through delivery of the NDIS (rule 3.2(c) of the Supports for Participants Rules).
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 NDIA must also take into account, and if necessary seek, expert opinion (rule 3.3 of the Supports for Participants Rules).
The Supports for Participants Rules do not limit the kind of evidence that may be relevant, and nor do they suggest that more weight should be given to any kind of evidence over another. However, the Rules do indicate that expert opinion may be particularly relevant.
Also, the participant's lived experience (i.e. their first-hand knowledge, experience and understanding of their conditions and various treatments) will inevitably be subjective, however, this does not mean that it is of limited probative value. How much weight ‘lived experience' should be given will depend on all of the available evidence. Where lived experience is consistent with reliable, relevant, independent evidence, it will likely be given a good deal of weight. Where it is at odds with other evidence, it may be given less weight.
Where reliable, relevant independent evidence is lacking, evidence of ‘lived experience' may be particularly important (see McCutcheon and NDIA [2015] AATA 624 at [86]) (external).
Whether or not there is unarguable evidence of the benefits of a proposed support is not the test of whether a support is likely to be effective and beneficial having regard to current good practice. Rather, the NDIA will need to be satisfied that there is evidence, even if anecdotal, from a sufficient number of qualified experts, of positive outcomes in a sufficient number of people. Emerging signs of positive outcomes in isolation will not be sufficient (see TKCW and NDIA [2014] AATA 501 at [74] and [75]) (external).
A support may be effective and beneficial where the desired effect or benefit achieved is to maintain a participant's level of functioning (as opposed to effecting any long-term change in the disability itself) at a level which enables the person to engage in social and economic activities to the extent they are able to engage (see McCutcheon and NDIA [2015] AATA 624) (external).
Importantly, whilst one of the objects of the NDIS Act is to promote the provision of high quality and innovative supports (section 3(g)), innovation, of itself, does not displace the requirement that a support must be effective and beneficial, having regard to current good practice (see TKCW and NDIA [2014] AATA 501 at [71]) (external)
This requirement also reflects the need to have regard to the financial sustainability of the NDIS which is likely to be undermined if funding for supports whose effectiveness and benefits are largely unknown, especially where a reliable means of measuring the benefits of a support in a single case is lacking (see TKCW and NDIA [2014] AATA 501 at [76]) (external) and (section 3(3)(b)).
At the time of the decision under review, the Including Specific Types of Supports in Plans Operational Guideline – Assistance Animals, contained further guidance on the question of whether assistance animals are a reasonable and necessary support. According to the Respondent, it provided in relation to section 34(1)(d):
There is insufficient published and refereed evidence at this time to support the use of epilepsy seizure dogs as an effective and reliable disability support.
…
To meet this criterion, the NDIA needs information and evidence confirming the following:
•best-practice interventions that have been used or trialled and how effective they are;
•how the assistance animal will perform at least three tasks that the participant is unable to do;
•pre-and post-trial outcome measures and/or lived experience;
•how the outcomes are a direct result of the assistance animal;
•the assistance animal has completed relevant training, and been assessed as suitably qualified as an assistance animal, and
•how the assistance animal has been assessed as suitable for the participant.[163]
[163] Respondent’s Statement of Issues, Facts and Contentions dated 21 June 2022 at [66]-[68].
The current Assistance Animals Guideline takes a more nuanced approach. After referring to the La Trobe Report and (inter alia) advising that ‘companion’, ‘emotional support’ and ‘therapy’ animals are ‘unlikely’ to meet NDIS funding criteria, it provides that:
We’ll always consider your individual situation when we decide whether a support meets the NDIS funding criteria. But we generally won’t fund an animal if it doesn’t meet the definition of an assistance animal or dog guide. This is because they’re unlikely to be a disability-related support, effective and beneficial, or value for money.
We generally don’t fund medical alert animals, even though they can sometimes be seen as a type of assistance animal. This is because there’s currently not enough evidence about the effectiveness of these animals, having regard to current good practice.[164]
For example, there’s currently very little evidence that epilepsy seizure dogs are an effective and reliable disability support. It’s not clear that an animal can effectively detect and warn someone of an epileptic seizure. The existing evidence base is weak, and the narrowness of existing research make it hard to draw clear conclusions about their effectiveness.[165]
[164] NDIS Act 2013 s 34(1)(d); Support Rules r 3.2.
[165] Assistance Animals Guideline 4.
I am not satisfied that a seizure-alert dog will be, or is likely to be, effective and beneficial for the participant. Having regard to the evidence before the Tribunal, the La Trobe Report remains the most recent comprehensive study of the subject of assistance animals generally, and medical alert animals in particular, in Australia. There has been no evidence presented to the Tribunal that derogates from its findings and conclusions. The additional literature on the subject referred to in reports advocating the efficacy of seizure-alert dogs – to the extent made available to the Tribunal – does not significantly advance what was known to the La Trobe Report authors. It certainly does not support Ms Carew’s assertions of infallibility. The premises in the current Assistance Animals Guideline, on which the Respondent’s medical alert animal policy is based, are supported by the evidence before the Tribunal.
Further, if a suitable animal may be identified and trained to invariably detect the Applicant’s epileptic seizures in advance, there is no evidence as to how far in advance of an episode it may be able to give warning. Ms Wheelehen’s hope that it may be within a useful timely period in advance of an impending seizure is unsupported by any evidence from CSDTA or from the available literature. It seems to the Tribunal that, even if a reliable alert could be guaranteed, in the absence of evidence to the contrary an alert would need to be proximate to the seizure to protect the Applicant or ease her anxiety, especially as she seems to have many and frequent seizures. For carers to be put on notice that a dangerous seizure[166] will occur in hours, or even the next day, is unlikely to be of much assistance to prepare for it, and if the Applicant experiences up to 20-30 seizures of different types a night, it is unclear how a warning is going to improve on vigilance.
[166] Those that Ms Bennie describes as ‘Seizures that pose the greatest safety risk’: Exhibit A1, 10.
Ms Bennie reports that the Applicant’s support staff can misinterpret pre-seizure behavior as a refusal to communicate, which she asserts limits the Applicant’s choices and opportunity to participate in activities, whereas if a dog detected and warned that the behavior indicated an imminent seizure and that her ability to make choices and engage is impaired, carers could ‘respond accordingly and be considerate of Isobella’s voluntary decisions, thus empowering her’.[167] It is not clear how misinterpreting the Applicant’s pre-seizure behaviour as a choice not to communicate denies her empowerment, or how a dog warning of an impending seizure and thus triggering a protective response empowers her. It is also unclear why the support staff cannot be better trained to be aware that a refusal by the Applicant to communicate may, in fact, be seizure related.
[167] Exhibit A1, 4.
Further, on the available evidence, the need for the support staff is not removed by the provision of a seizure-alert dog. On the contrary, even if the evidence supported the efficacy and reliability of a seizure-alert dog, the frequency of such seizures and the uncertainty as to how far in advance of a seizure the alert may be given seems to require maintaining at least the current level of carer support. At best, a seizure-alert dog may be an additional level of support to reinforce that currently funded, albeit allowing a small relaxation of the direct supervision currently provided.
It is apparent from the current trial involving CSDTA’s therapy dogs that the Applicant is receiving quality of life benefits from increased independence, motivation and engagement. Nevertheless, the necessity of an assistance dog, rather than a suitably trained companion or therapy dog that can provide the same benefits, is not established.
In the circumstances, and having regard to the current evidence, the Tribunal is not satisfied that the requested support of a medical alert animal will be, or is likely to be, effective and beneficial for the participant. While there are indicia that a non-medical alert assistance animal has demonstrated some benefits to the Applicant, the evidence is insufficient for me to conclude that the same benefits could not be achieved by a suitably selected and trained companion, emotional support, or therapy animal.
Harm and duplication
The Rules at 5.1 provide:
A 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
…
(c)it duplicates other supports delivered under alternative funding through the NDIS.
Furthermore, the Animal Assistance Guideline provides:[168]
[168] Assistance Animals Guideline 10, ‘What about the welfare of the assistance animal?’
We will not fund an assistance animal if there’s a risk to its wellbeing and safety. We need to be sure the animal will:
·be properly cared for
·be treated well
·get enough rest and play time
This is so it can do its tasks and be an effective and beneficial support.
We need to make sure:
·you can provide the right diet for the animal and you can feed it regularly
·you can provide a safe, caring home
·the animal will get enough exercise
·if there are there [sic] other pets in the home they won’t stop the assistance animal from working effectively
·your home environment won’t disrupt or stress the animal. For example, if there are young or noisy children who might stress the animal
·the animal will be safe if you or anyone else in your home has behaviours of concern that might pose a risk to the animal.
The assistance animal shouldn’t be at risk of neglect or harm because of where it lives or works, or if you have behaviours of concern. The health care professional who prescribes you an assistance animal is responsible for making sure you can properly care for your animal. This isn’t our responsibility.
Your health care professional will do an assessment. This will work out if there are any risks to the assistance animal and whether you can take care of it.
We need to know you’re in a stable situation and can care for the animal. So, we won’t fund any assistance animal if:
·you have behaviours of concern including aggressive or violent behaviour
·you’ve been admitted to hospital for suicide attempts or self-harm in the past 12 months
·you’ve misused drug or alcohol in the past 12 months and are not stable
·the home where the assistance animal will live is unsuitable.
We’ll also look at your suitability assessment done by your provider, and will not fund an assistance animal if:
·there is risk to it when doing its tasks, for example, lifting or pulling heavy items or leading an electric wheelchair
·it’s likely it won’t have enough rest and play time.
The Respondent noted ‘behaviours of concern’ on the part of the Applicant that risk harm to both her and to the requested support, ‘particularly if unsupervised’.[169] Following Ms Wheelehen’s evidence, the Respondent noted that there was no positive behaviour support plan in evidence.[170] Its relevance was said to be in respect of behaviours of concern that needed to be addressed, and to identify any of those that might be harmful to the animal or expose the Applicant to harm.[171]
[169] Respondent’s Statement of Issues, Facts and Contentions dated 21 June 2022 at [77].
[170] Transcript 23.
[171] Transcript 24.
Ms Wheelehen advised that she had a behaviour support plan for the Applicant but was disinclined to provide it.[172] Ms Wheelehen explained that the Applicant’s aggression, including towards Ms Wheelehen, was linked to the Applicant’s sensory sensitivity, which she had little hope could be addressed,[173] and to medication that has since been ceased.[174] Her other harmful behaviours are of self-harm. The Applicant’s harmful behaviours were not aggression or harm towards animals.[175]
[172] ‘I’m happy to provide information with regards to a sensory profile in that sense, or to respond or get the behaviour support practitioner to respond specifically to questions that you may have. However, I think that I very much disclosed an awful lot about Isobella. I don’t think that you need any more information about her.’: Transcript 23.
[173] ‘I’ve been working on it for over 23 years. We identified early on that Isobella was highly sensory to the point that if I touched her arm she would bite me. So I’ve done a lot of stuff to try and reduce that sensitivity, but at this point in time it has not worked. So I can’t anticipate it will’: Transcript 19.
[174] Transcript 25.
[175] Transcript 24.
This is consistent with what Ms Logan identified as the behavioural issues prompting her preparation of the Positive Behaviour Support Plan.[176] Ms Logan, in her report referring to the behaviour support plan, and aware of the application for an assistance animal, raised no concerns about aggression or harm towards a prospective animal.
[176] See paragraph 82, supra: Exhibit R1, T4 256-257.
There was no evidence before the Tribunal of any adverse behaviour on the Applicant’s part during her engagement with either Max, or the animals in the CSTDA ACE program. In the absence of such evidence and having regard to the positive behaviour so far exhibited by the Applicant when engaging with those animals, I have no cause for concern about her safety or that of a suitably trained assistance animal.
Otherwise, I am prepared to infer from Ms Wheelehen’s experience with her dog Max, her commitment to her daughter’s well-being, and her eagerness to secure a suitable animal, that arrangements would be made to ensure the proper care and treatment of an assistance animal.
I do, however, have concerns about what may be expected of a seizure-alert dog. Issues with Ms Carew and CSTDA’s evidence as to the efficacy of a seizure-alert dog, and what may realistically be expected of one, have already been identified. However, the expectation appears to be that it will be able to alert carers to seizures in time for them to take action not only when the Applicant is awake and active, but at night.
Ms Carew, in her detailed schedule for ‘Bella’s daily routine’[177] has the assistance animal with the Applicant throughout her day, at home or abroad, and present whether she is active – including when bathing and toileting – or inactive. She advises that the Applicant rests due to fatigue between 30-60 minutes two to three times a day. It is during these times that she posits ‘the AD [assistance dog] can also rest’, albeit presumably still be expected to alert carers to an impending seizure or be available for support. The Bennie Report also seems to presume that the dog will be alert all and every day and night to detect seizures carers cannot or do not notice.
[177] Exhibit R1, T1B Appendix 3 149-155.
Plainly, in circumstances where there is an assistance animal some routine is likely to emerge which is mutually convenient to the animal and its charge, and where both can sensibly coexist. However, the expectation in this case is that a seizure-alert dog will detect – hopefully sufficiently in advance – what may be a large number of frequent seizures throughout the day and, particularly, the night. The expectation also appears to be that this alert and assistance capability will meet needs that assistive technology and carer support cannot. I have already indicated that this expectation is not supported by adequate cogent evidence. As to the animal welfare aspects of the Assistance Animals Guideline, the Tribunal has no evidence as to what the Applicant and CSTDA reasonably expect the animal to do, and how it is to do it, and not leave the Applicant at risk.
Further to this, the Applicant reportedly requires 24 hours-per-day care, 7 days-a-week on a 1:1 basis. This is understood to be necessary to ensure the Applicant’s safety in the event of a seizure and due to her risk of SUDEP.[178] There is force in the Respondent’s contention that relying upon a seizure-alert dog, in lieu of the care of another person, where the effectiveness of seizure-alert animals is not clearly demonstrated can lead to a false sense of security. In that respect, the provision of a seizure-alert animal is likely to cause harm to the Applicant.
[178] Exhibit R1, T1B 113.
The Respondent also contends, having regard to rule 5.1(c), that funding the requested support will result in a duplication of supports, on the basis that the Applicant is presently funded for assistive technology directed towards seizure alert detection and 24 hour-per-day, 7 day-a-week, support workers. This would be so, if an assistance animal did no more than the assistive technology or carers are able to do. As I have formed the view that a properly trained assistance animal – with or without alert capabilities – can provide more than that, there may be some overlap and reinforcement, but not necessarily a duplication. However, in the circumstances, I need not consider this aspect further.
Section 34(1)(e): will the funding or provision of the support take account of what it is reasonable to expect families, carers, informal networks and the community to provide?
Rule 3.4 of the Support Rules relevantly provides:
In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:
…
(b) for other participants:
(i)the extent of any risks to the wellbeing of the participant arising from the participant’s reliance on the support of family members, carers, informal networks and the community; and
(ii)the suitability of family members, carers, informal networks and the community to provide the supports that the participant requires, including such factors as:
(A)the age and capacity of the participant’s family members and carers, including the extent to which family and community supports are available to sustain them in their caring role; and
(B)the intensity and type of support that is required and whether it is age and gender appropriate for a particular family member or carer to be providing that care; and
(C)the extent of any risks to the long term wellbeing of any of the family members or carers (for example, a child should not be expected to provide care for their parents, siblings or other relatives or be required to limit their educational opportunities);
and
(iii)the extent to which informal supports contribute to or reduce a participant’s level of independence and other outcomes;
…
(c)for all participants—the desirability of supporting and developing the potential contributions of informal supports and networks within their communities.
Given the Applicant’s age and her desire to live independently, the Respondent accepts that she satisfies section 34(1)(e). The Tribunal concurs.
Section 34(1)(f): is the support is most appropriately funded or provided through the National Disability Insurance Scheme, and not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery 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 Respondent does not appear to argue that, should a seizure-alert or assistance dog be found to be a reasonable and necessary support, it would be more appropriately funded or provided by a system of service delivery or support services other than the National Disability Insurance Scheme. No other service delivery or support service has been identified.
CONCLUSION
Having considered the evidence, and for the reasons expressed, I am not satisfied that the requested support of a medical alert animal meets the requirements of section 34(1)(c) and (d) of the NDIS Act. I am not satisfied on the evidence that the benefits the Applicant has enjoyed from engaging with therapy animals can only be provided by an assistance animal. I have insufficient evidence to be satisfied that in lieu of a medical alert animal the Applicant requires awake-at-night staff, but consider that it is something that the Respondent should evaluate.
DECISION
The decision under review is affirmed.
I certify that the preceding 179 (one hundred and seventy-nine) paragraphs are a true copy of the reasons for decision of Deputy President Mischin
………………[Sgd].…………………
Associate
Dated: 7 September 2023Dates of the hearing: 1 November 2022
Date of final submissions: 6 December 2022
Representative for the Applicant: Ms C Wheelehen
Counsel for the Respondent: Mr J P Lessing
Solicitor for the Respondent: HWL Ebsworth
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