VXVL and National Disability Insurance Agency - [2024] AATA 29

VXVL and National Disability Insurance Agency [2024] AATA 29 (16 January 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2021/0839
Re:VXVL
APPLICANT

AndNational Disability Insurance Agency
RESPONDENT

DECISION
Tribunal:Senior Member P J Clauson AM
Date:16 January 2024
Place:Brisbane

Pursuant to section 42C(2) of the AAT Act, the Tribunal decides that the Respondent’s decision made on 10 February 2021 under section 100(6) of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act) be set aside and remits the matter for reconsideration in accordance with directions that:
A.        From 10 February 2021 the applicant’s statement of participant supports specifies that the reasonable and necessary supports include:
(a)       An increase in Core Support – Daily Activities budget to access assistance with self-care, comprising:
(i)        16 hours support worker at the high intensity (level 2) rate for 16 hours per day, seven days a week for 12 months;
(b)       An increase in Core Support – Daily Activities budget to access:
(i)        8 hours active overnight care at the high intensity (level 2) rate for 7 nights a week for 6 months; and
(ii)       8 hours inactive overnight care at the high intensity (level 2) rate for 7 nights a week for 6 months
B.        Within 28 days of this decision, the applicant’s statement of participant supports specifies that the reasonable and necessary supports include:
(a)       An increase in Core Support – Social Community and Civic Participation to access social groups for 20 hours per week with 2:1 support worker assistance, including travel time and including the activities of:
(ii)       Surfing
(iii)      Horse riding
(iv)      Dancing
(v)       Drama
(b)       Approval for Home Modifications involving the addition of an ensuite bathroom to a bedroom in the main house as specified by Ms Tara Quinn in her Complex Home Modification assessment dated 16 June 2020 to the amount of $61,204.00;
C.       Assistive Technology Assessments should be conducted and funded for the applicant to trial seizure alert devices for a 6-month period;
D.       The support at (A)(b) above is to be reviewed 6 months from the date on which the support is included in the applicant’s statement of participant supports to allow for the applicant to trial and the respondent to assess the suitability of seizure alert devices; and
E.        The date by which the Respondent must reassess the applicant’s plan is to be 12 months after the date on which the supports in paragraphs (a)-(d) above are included in the applicant’s statement of participant supports.
...................................[SGD].....................................
Senior Member P J Clauson AM
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – severe epilepsy caused by rare genetic disorder – intellectual impairment – degenerative condition - applicant has intense and complex support needs - what it is reasonable to expect families, carers, informal networks and the community to provide – home modifications – value for money – whether there are comparable supports which would achieve the same outcome at a substantially lower cost – provision of social activities as therapy – when personally expended costs for reasonable and necessary supports should be considered - decision set aside and remitted.
Legislation
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules2013
Cases
Harris and National Disability Insurance Agency [2022] AATA 276
Hill and National Disability Insurance Agency [2023] AATA 3626:
LZMX and National Disability Insurance Agency [2021] AATA 378
National Disability Insurance Agency v Davis [2022] FCA 1002
Warwick and National Disability Insurance Agency [2023] AATA 3093
Secondary Materials
NDIS Operational Guidelines – Including Specific Types of Supports in Plans
REASONS FOR DECISION
Senior Member P J Clauson AM
16 January 2024
BACKGROUND

VXVL (the applicant) is a 19-year-old participant of the National Disability Insurance Scheme (the Scheme) diagnosed with SLC6A1 epileptic encephalopathy and associated intellectual disability.[1]
[1] R3, Document 17: Respondent’s Statement of Facts, Issues and Contentions.
This application is made on her behalf by way of her mother and primary carer (M). She is represented by Ms Julia Clancy of Spinal Cord Injuries Australia (SCIA).
On 12 November 2020 a delegate of the National Disability Insurance Agency (the Agency) approved a statement of participant supports with a review date of 12 November 2021.[2] On 18 November 2020 the applicant requested an internal review by the Agency of those supports funded.
[2] T-Documents, T1C.
On 10 February 2021 the Agency made a decision pursuant to section 100(6) of the National Disability Insurance Scheme Act2013 (NDIS Act) (the decision under review) as follows:[3]
(a)To approve an increase the applicant’s Core Support – Daily Activities budget to access assistance with self-care five hours per weekday and five hours per Saturday (less than the 52 weekday hours and 9 hours per Saturday requested);
(b)To not approve an increase in the applicant’s Core Support – Daily Activities budget to access overnight care 3 nights per week; and
(c)To not approve a request for a $25,032.50 increase in the applicant’s Core Support – Social Community and Civic Participation budget to enable her to access surfing, horse riding, dancing and drama sessions.
[3] T-Documents, T1A.
On 2 September 2021 the Tribunal made an order under section 42D(1) of the AAT act to remit the reviewable decision to the Agency for reconsideration, who on 7 September 2021 varied the decision under review to include the following as reasonable and necessary supports:
(a)48 weeks speech pathology;
(b)1 hour per week occupational therapy for 48 weeks – stated support; and
(c)8 hours overnight support worker 3 nights per week for 52 weeks – stated support.
On 7 October 2021 the parties agreed for the Tribunal to remit the decision under review as varied back to the Agency for reconsideration pursuant to section 42D(2) of the AAT Act. The Agency, on remittal, agreed to include the following supports for a four-month period:
(a)8 hours support worker per weekday (total);
(b)6 hours support worker per Saturday (total);
(c)6 hours support worker per Sunday (total); and
(d)10 hours social community and civic participation per week.
On 3 December 2021 the Agency conducted a “light touch plan review” to continue funding the applicant’s approved supports for a seven-month period.
On 24 December 2021 the applicant’s mother requested a further “light touch plan review” to change certain supports from self-managed to plan-managed. The Agency implemented the variation by way of a statement of participant supports commencing 24 December 2021 that otherwise incorporated the same supports pro-rated for a seven-month period.
On 21 April and 13 July in 2022 the decision under review was again remitted to the Agency to vary applicant’s statement of participant supports to include funding for supports that the Agency accepted as reasonable and necessary.
THE ISSUE BEFORE THE TRIBUNAL
The Tribunal’s jurisdiction is not contested by the Agency who does not make submissions in this regard, and the Tribunal is satisfied it maintains the jurisdiction to review this application. The issue before the Tribunal therefore is to decide:
(a)what supports are to be included in the applicant’s statement of participant supports as reasonable and necessary pursuant to section 34 of the NDIS Act; and
(b)the date from which the Tribunal, with regard to the Agency’s subsequent approvals of funding for further supports from the date of the decision under review, should approve those reasonable and necessary supports.
These questions are relevant to the applicant’s request for support worker assistance, overnight care and social, civic and community participation support. In order to meet the level of care she contends ought to have been funded in the applicant’s statement of participant supports, the applicant’s mother has personally expended funds to provide further hours for support workers and provided formal care to the applicant since the time of the decision under review.
The Tribunal refers to the findings of Mortimer J in National Disability Insurance Agency v Davis [2022] FCA 1002:[4]
“The NDIS Act is beneficial and remedial legislation designed to operate in relatively high volume decision-making, in a pragmatic context, and in respect of people (and their families and carers) already facing great challenges in their daily lives.”
[4] at [142].
The beneficial and remedial nature of the NDIS Act permits the Tribunal to consider reimbursement for funds expended for supports and hours of care provided that are found to be reasonable and necessary on review, as explained in Hill and National Disability Insurance Agency [2023] AATA 3626:
[86] …
“Once a participant’s statutory entitlement to review is enlivened by request under s 100(2) or by subsequent application to the Tribunal under s 103(1), such questions of utility may readily be dealt with in the review. Such considerations do not curtail the participant’s statutory entitlement to review, and they do not limit the scope of the review, which runs from the date the original decision had or could have had effect under applicable provisions of the NDIS Act.
[87] Thus, consistent with the approach adopted in QDKH, WRMF, McGarrigle and Davis, in consideration of the matters set out in s 33(5) and s 34, where a decision of the CEO to refuse to approve a support for a participant is varied or set aside and substituted on review with a decision to approve provision or funding of the support, where costs have been incurred to obtain the support for the participant, the participant may be entitled to recover from the earliest date the CEO’s original decision had or could have had effect, or if the cost was incurred at a later date, from that date.”
The Tribunal is therefore open to consider the approval of supports from 10 February 2021.
THE APPLICANT’S POSITION
The applicant seeks a review on the basis that the following supports sought are reasonable and necessary and should be included in the applicant’s statement of participant supports:[5]
(a)Increase in the Core Support – Daily Activities budget to access 1:1 support at the high intensity (level 2) rate for 16 hours per day between 8am and 10pm;
(b)Increase in the Core Support – Daily Activities budget to access 1:1 overnight care support at the high intensity (level 2) rate for eight hours of active overnight care, seven nights a week;
(c)Increase in the Core Support - Social, Community and Civic Participation budget to access social groups up to six hours per day Monday to Friday including 2:1 support worker assistance;
(d)Approval for Home Modifications involving the addition of an ensuite bathroom to a bedroom in the main house, quoted at a total of $61,204.00[6]; and
(e)For the applicant’s plan to be changed to a 24-month plan.
[5] Transcript of Proceedings, page 6 line 25 to page 7 line 5.
[6] ST1: “Plans for proposed building alterations prepared by Design Evolutions” dated 6 May 2020,
pages 309-311.
THE AGENCY’S POSITION
The Agency submits that 14 hours of 1:1 high intensity (level 2) support worker assistance, seven days a week, is a reasonable and necessary support for the applicant and that the additional 2 hours sought are reasonably expected to be provided by her mother and father.[7]
[7] Respondent’s Statement of Facts, Issues and Contentions (SFIC) at [207]-[210].
On review of the applicant’s recorded seizure activity the Agency finds the reasonable and necessary level of overnight care is six months active overnight assistance and six months of inactive overnight assistance per fortnight.[8] The Agency refers to a number of nights where only one or two seizures are recorded between 10pm and 6am and some nights with no seizures at all.
[8] Transcript of Proceedings, page 198 at lines 33 to 36.
On this basis, the Agency finds a 50 percent active and 50 percent inactive approach appropriate so that when the applicant experiences a relatively undisturbed night this can be charged as an inactive support.
The Agency currently provides for ten hours of social activity per week with 2:1 support worker assistance and maintains that further hours are a day-to-day living cost excluded from funding. Further, that the evidence does not establish that 2:1 support worker assistance is required for 30 hours of activity a week.[9]
[9] Transcript of Proceedings, page 198 at lines 40 to 47.
The Agency considers that 30 hours per week goes beyond the applicant’s current demonstrated requirements given the fluctuations in her health and tendency to fatigue quickly. In regard to 2:1 support the Agency submits that M already attends to some activities as a secondary support and that some activities have disability-trained staff who would be in a position to provide secondary support as needed.
Two hours a week are proposed to be provided for longer road trips or participation in activities where no secondary assistance is available.
The Agency accepts that the ensuite would afford the applicant more privacy and dignity in her sleeping area and that some modifications to the applicant’s home are needed in this respect. The Agency does not accept that the applicant is unable to achieve greater dignity and privacy via alternative less costly home modifications.[10]
[10] R3, Document 17: Respondent’s Statement of Facts, Issues and Contentions at [221].
The Agency states it is not in a position to agree to the proposed modifications without a more current occupational therapist assessment than the assessment made in June 2020. Further, that the cost estimate provided of the Agency’s proposed alternative lacks sufficient detail and is made without any consultation with an occupational therapist.
The Agency proposes to fund further investigations into the cost-effectiveness of modifying the applicant’s current sleeping area by including funding for an updated complex home modification assessment and scope of works in the applicant’s statement of participant supports.[11]
[11] Ibid at [19] and [226].
The Agency contends the applicant’s statement of participant supports should include the following:
(a)Increase in the Core Support – Daily Activities budget to access 1:1 support at the high intensity (level 2) rate for 14 hours per day;
(b)Increase in the Core Support – Daily Activities budget to access 1:1 overnight care support at the high intensity (level 2) rate for eight hours of active overnight care, seven nights a week and eight hours of inactive overnight care per fortnight;
(c)Support worker assistance for two hours per week for social activities in addition to the regular support worker assistance;
(d)Funding for an updated complex home modification assessment;
(e)48 weeks speech pathology;
(f)1 hour per week occupational therapy for 48 weeks – stated support; and
(G)All other supports in the applicant’s current plan be replicated.
RULES AND LEGISLATION
In determining whether a support is “reasonable and necessary” for the purpose of approving a statement of participant supports, the support must satisfy the cumulative criteria set forth in section 34 of the NDIS Act:
Reasonable and necessary supports
(1) For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a) the support will assist the participant to pursue the goals, objectives and aspirations included in the participant's statement of goals and aspirations;
(b) the support will assist the participant to undertake activities, so as to facilitate the participant's social and economic participation;
(c) the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d) the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e) the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
(f) the support is most appropriately funded or provided through the NationalDisability 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.
(2) The National Disability Insurance Scheme rules may 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 (1)(a) to (f).
The Agency submits that 16 hours of support worker assistance and eight hours of overnight care per day does not meet the prescribed criterion at section 34(1)(e) of the NDIS Act.
Section 33 of the NDIS sets out matters that must be included in a participant's plan, including:
(5) In deciding whether or not to approve a statement of participant supports under subsection (2), the CEO must:
(a) have regard to the participant's statement of goals and aspirations; and
(b) have regard to relevant assessments conducted in relation to the participant; and
(c) be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d) apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e) have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f) have regard to the operation and effectiveness of any previous plans of the participant.
Relevant to section 33(5)(d) is the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the NDIS Rules) which provides criteria by which to assess a reasonable and necessary support and decide whether the support ought to be funded by the Scheme.[12]
[12] Rule 1.1 NDIS Rules.
Relevant to section 34(1)(e) of the NDIS Act is Rule 3.4 which states:
Reasonable family, carer and other support
3.4     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:
(a)     for a participant who is a child:
(i)      that it is normal for parents to provide substantial care and support for children; and
(ii)     whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii)     the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv)    whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
(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.

The Tribunal notes that at the time of review the applicant was a child and, at the time of this deliberation, has since become an adult. This decision therefore considers the criteria under Rule 3.4(a),(b) and (c) to be applicable.
The applicant’s request of funding for six hours per day, 5 days a week for social activity has been excluded as a “day to day living cost” and prevented from being funding by virtue of Rule 5.1(d) which states:
General criteria for supports
5.1     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
(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.
5.2 The 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.
The Agency does not accept that the ensuite bathroom reflects value for money in accordance with section 34(1)(c) of the NDIS Act as there is a more cost-effective alternative as considered by Rule 3.1(a) of the NDIS Rules, which states:
Value for money
3.1     In deciding whether the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support, the CEO is to consider the following matters:
(a)     whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b)     whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long‑term benefit to, the participant;
(c)     whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d)     for supports that involve the provision of equipment or modifications:
(i)      the comparative cost of purchasing or leasing the equipment or modifications; and
(ii)     whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e)     whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f)      whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
The Tribunal must also have regard to Part 5 of the Operational Guidelines – Specific Types of Supports which relevantly states:[13]
[13]
“… the NDIA must also be satisfied, amongst other matters, that the home modification being considered 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 (section 34(1)(c)).
When determining whether home modifications represent value for money, the NDIA will specifically consider:
• whether the proposed home modification represents value for money when compared to the cost of other lower cost alternatives, for example less costly home modifications which reasonably achieve the same intended benefits or outcomes, or assistive technology;
• whether the proposed home modification is cost effective when compared to the cost of other supports such as assistance with the cost of moving to accessible premises; and
• the expected length of tenure for participants and whether this is commensurate to the cost of the home modifications.
…
Generally, the NDIA will fund reasonable and necessary home modifications:
• to the participant’s primary residence where, due to the impact of the participant’s
disability, the participant or their carers are unable to reasonably access and use
frequently used rooms and spaces using standard fixtures and fittings;
• when the participant’s primary residence, in its current condition, has a significant and adverse impact on the sustainability of current living and care arrangements; and
• where a suitably qualified Occupational Therapist has performed an assessment and recommended home modifications considering all possible alternatives, including the use of equipment.
…
The NDIS will generally not fund:
…
• capital building additions such as additions of rooms, stories or lifts or inclinators to allow access to multiple levels of a home or steep blocks of land. However, when considering whether the funding of items of this kind is reasonable and necessary the NDIA will also consider:
(i) whether other parts of the house can be reasonably organised as an alternative;
(ii) whether alternate accommodation which is more accessible or more easily
modified is available and the cost;
(iii) whether there are compelling factors related to the participant, their family,
community or employment which makes moving premises unrealistic; and
(iv) the long term costs and benefits of alternative funded supports against the costs
and benefits of the modifications to the home.”
CONTENTIONS AND EVIDENCE
In addition to substantial written submissions lodged with the Tribunal, the parties called a number of witnesses to give evidence including the applicant’s treating practitioners and mother. The Tribunal has reviewed all evidence put before it and summarised what it considers relevant to this decision as set out below.
Evidence of Angelina Broer
Ms Broer, Physiotherapist, assessed the applicant at her home in May of 2022 at the request of the applicant and produced a subsequent report for the purpose of providing NDIS support recommendations.[14]
[14] R3, Document 1: Report of Ms Angelina Broer dated 9 June 2022, page 4.
In her report Ms Broer described the deterioration of the applicant’s condition and decrease in functional capacity over the last year. She stated that the applicant now scored 7 on the Care and Needs (CANS) scale and required support worker assistance 24 hours per day to complete all daily living tasks.
She further noted the applicant’s goal to maintain and improve her muscle tone which, with improved coordination, would reduce her dependence on assistance for care supports. Ms Broer recommended 2:1 support “for VXVL to undertake activities within the community. VXVL requires this support up to 6 hours per day, three to four days per week. Depending on the type and risk of the activity”.
The applicant’s mother was stated to have scored 11 out of 12 on the “Caregiver Strain Index” indicating an “extremely high level of stress” due to the increasing level of support she was providing to the applicant.
Evidence of Ms Ilse van Oostenbrugge
Ms van Oostenbrugge, Senior Physiotherapist, examined the applicant on 7 April 2021 and provided a letter dated 14 April 2021 with recommendations for the applicant.[15]
[15] R2, ST1: Letter from Ms van Oostenbrugge to the NDIA dated 14 April 2021, page 384-387.
She observed the applicant’s chronic pain, postural changes and hypotonia (low resting muscle tone). She stated that further decline in the applicant’s general conditioning will most likely affect pain levels, general stamina, energy levels and ADL functions, which were already “severely compromised”.
Ms van Oostenbrugge spoke to the importance of exercise interventions, stating:
“Exercise can prevent a decline in general deconditioning, declining posture, which by itself frequently leads to further pain. Chronic pain if not addressed, is closely related to an increase in comorbidities.
Chronic pain has been identified to be a risk factor for compromised self-care, physical functioning, mood and frequently reduces the quality of one’s life.”
She stated that activities in a group environment are known to beneficially influence chronic pain, and that low-impact activities including swimming, horse-riding, surfing and group dance would prevent further deconditioning and improve the applicant’s quality of life.
Evidence of Ms Jana Loadsman
The applicant called Ms Jana Loadsman, Occupational Therapist, who had assessed the applicant on various occasions and provided subsequent reports dated 14 January 2020, November 2020, 7 April 2021, 20 June 2021 and 7 March 2022.[16]
[16] T-Documents, T8; R2, Documents ST1; ST5
Ms Loadsman confirmed that, in her view, the applicant required 24/7 support at a 1:1 or 2:1 ratio. She referred to the applicant’s daily complex seizures and need for safety in the home and community. She described the applicant as an active member in her community with “choice and control” across her daily activities.
Ms Loadsman explained that the applicant’s epileptic seizures made her oxygen-dependant which created a substantial risk of brain-damage and Sudden Unexpected Death from Epilepsy (SUDEP). She stated that, for a person with epilepsy, their highest rate of seizures were experienced when asleep or falling asleep and therefore the applicant required seven nights of active overnight care each week.
The 24/7 support she recommended for the applicant was due to the ‘unexpected’ nature of the applicant’s seizures, stating:[17]
“…because her seizures are so unexpected we can’t plan for them. We can’t anticipate when her next one is going to be. There’s no - like event - that show us that she’s going to have a large seizure and so - you know - always recommend that she has somebody with her 100 per cent of the time. And I guess that two-to-one support is in the event of the seizure.”
[17] Transcript of Proceedings, page 22 lines 39 to 43.
It was in the event of a seizure that Ms Loadsman prescribed 2:1 support for the applicant to have one person administer oxygen and another to call first aid support and ensure she was in a safety position. Ms Loadsman maintained that the applicant was “unable to maintain her own safety” and unable to do anything independently.
When asked for her opinion on whether the applicant required 2:1 support at all times when in the community, Ms Loadsman stated that “it depends on the seizure they have…none of this is predictable. It’s just, you know, providing a duty of care to ensure that we’re reducing risk of harm”.[18]
[18] Transcript of Proceedings, page 25 lines 1 to 3.
Ms Loadsman was asked to confirm the circumstances under which she believed the applicant required 2:1 support on cross-examination, stating:
“it depends every single day for that postictal period depending on the severity of her seizures on any given day at any given time will depend on the level of care that she requires at the time. Certainly through the day and through the night…
And whether that happens during the day or through the night, it’s hard to predict. I don’t - there’s not one person on this planet that could predict when she’s going to need it.”
She confirmed a reference to her report of April 2021 stating that the applicant experienced an average of six or more seizures a day, each without any warning and occurring in spite of trialling various medications and treatments. In her report of June 2022 Ms Loadsman calculated an average of 3.15 seizures per day over a period of 92 days.
In regard to the home modifications sought, Ms Loadsman affirmed the view of her reports that the applicant required modifications to her living and bedroom space for privacy, particularly now that the applicant was an adult and sharing a bedroom with her mother.
Ms Loadsman was asked to clarify her letter of June 2022 in which she had stated that the applicant experienced seizure activity “for a mean average of 94 percent of the time”, confirming that this number included the after-effects of seizures. She further evidenced that the applicant’s needs were ‘rapidly increasing’ and would continue to increase over time.[19]
[19] Transcript of Proceedings, pages 43 and 44.
In her report of March 2022 she identified the estranged relationship between the applicant mother and biological father, who lived separately with the applicant’s older twin sisters. Never once, she said, had she seen him in person during her time providing supports to the applicant or had any opportunity to discuss the applicant’s care needs.
Ms Loadsman was queried as to whether she had trialled any alert devices with the applicant. She stated that she had recommended alert devices but never trialled any because it trialling devices was a matter of choice and control for families.[20]
[20] Transcript of Proceedings, page 44 lines 41 to 42.
Evidence of Ms Berri Drum
Ms Berri Drum, a support worker of the applicant, provided the Tribunal with a statement dated 20 April 2021 and oral evidence at the hearing.
Ms Drum had been supporting the applicant since January 2019; however she no longer did overnight support as she found it was impacting her life too much. She described her response to the applicant’s seizures during the night as “quite high-intensity” and not something she could sustain in the long-term.[21]
[21] Transcript of Proceedings, page 49.
Ms Drum was asked if she felt the applicant required 2:1 care at times, particularly in the community in the event of a seizure. Ms Drum agreed that at home 1:1 care was enough for the most part and 2:1 was required for community access. Ms Drum identified various triggers for the applicant’s seizures, albeit adding that sometimes there was no reason.
She recounted her experience assisting the applicant with her personal care and feeding. She described feeding as “really difficult” owing to limitations being able to communicate with the applicant, and the need to provide food and drink in a way in which the applicant still had autonomy.[22]
[22] Transcript of Proceedings, page 50 lines 41 to 44.
After approximately 1.5 years of two to three shifts a week with the applicant, Ms Drum found the level of intensity of care she required too stressful and had since only been caring for her one day a week as that was the most she could manage.
Ms Drum confirmed that if the applicant was sleeping during the day she would observe her on a monitor rather than being in the bedroom in the absence of any sign that the applicant required immediate attention. This allowed Ms Drum to perform some light housekeeping tasks such as sweeping or tidying so long as she kept the monitor with her.
In her statement Ms Drum referenced the steps she would take trying to keep the applicant from falling asleep in the care when attending activities, as she would often have a seizure if she fell asleep and this created a difficult situation given the extra risk of traffic. Ms Drum found the efficacy of her skills varied according to how tired the applicant was but estimated them to be 50 percent effective.[23]
[23] R2, Document ST1: Statement of Berri Drum.
Ms Drum stated that it was during her time with that applicant that the applicant’s mother was able to engage in university studies and engage in recreational activities. Whilst she was able to take care of the applicant by herself at such times, Ms Drum told the Tribunal that two support persons were required for the applicant to attend appointments.
Evidence of Ms Sonia Davidian
Ms Sonia Davidian, a support worker of the applicant, provided a statement to the Tribunal dated 17 November 2022 and answered questions arising from her statement at the hearing.
Ms Davidian stated she worked with the applicant three evenings per week although in the last two years she had also worked day shifts at the applicant’s home or engaging in activities outside.
When asked whether she felt the applicant required 2:1 support for daily activities such as swimming or dancing, Ms Davidian qualified that it would depend, and referred to the challenges associated with being alone with the applicant as opposed to undertaking an activity specifically designed for people with a disability. She considered the challenges associated with the applicant just making it out of the house and stated that the applicant would benefit from 2:1 support once outside.[24]
[24] Transcript of Proceedings, page 65 lines 1 to 30.
In her report, Ms Davidian supported a 24/7 care plan for the applicant, who in her opinion required “continuous, constant, surveillance and supervision and support”. In reference to the degree of activity involved in the applicant’s overnight care, she stated:[25]
“…how it’s handled is very much active, some nights are active, definitely, a couple of nights a week and yes, and other nights not.”
[25] Transcript of Proceedings, page 68 lines 11 to 13.
Ms Davidian reported that the stairs between the downstairs area of the main house to the upstairs bathroom presented a hazard to both the applicant and her carer, who would have to navigate them carrying oxygen tanks. The applicant’s bedroom, she said, was a separate dwelling next to the main house with an adjacent bathroom such that it was not practical for the applicant to use. The home modifications would be to provide an ensuite for a downstairs bedroom in the main house albeit that the applicant would require assistance to go to the bathroom no matter where it was.[26]
[26] Transcript of Proceedings, page 75.
Evidence of Dr Schulz-Robinson
The respondent called Dr Schulz-Robinson, Clinician and Registered Nurse, who observed the applicant over two eight-hour periods on consecutive days in October 2021 and subsequently prepared two reports for the purpose of these proceedings.[27]
[27] R3, Document 15: Report of Dr Robinson-Schulz dated 24 December 2021; Document 18, Supplementary report dated 19 April 2022.
Dr Schulz-Robinson confirmed she had observed the applicant used the outdoor bathroom during the observation days and was capable of walking between them although requiring assistance.
When asked whether there were any times at which she observed the applicant requiring 2:1 assistance, Dr Schulz-Robinson stated: [28]
“No. I mean, there was certainly - if I can clarify that, when she had the seizure in the morning, certainly the two support workers were there and there was some interaction between them. But I did - in terms of say, for example, her needing to move and do things, no there was not any need for physically two people to be doing something at the time that I was observing.”
[28] Transcript of Proceedings, page 81 lines 14 to 19.
Dr Schulz-Robinson agreed that the applicant required assistance with all activities in daily life and to be monitored during the evenings. In the proposed circumstance of the applicant having overnight support and sleeping in a separate bedroom to her mother, Dr Schulz-Robinson saw no reason why the applicant’s mother could not provide two hours of 1:1 care each day.
Dr Schulz-Robinson reported her observed changes in the applicant’s behaviour and alertness when she was swimming at the beach and dancing with her theatre group. She described these experiences as “a physically stimulating opportunity for the applicant to learn new skills, be emotionally engaged, and develop physical stamina”.
She stated that for a child with a disability, activities such as dancing and horse-riding are therapeutic as they facilitate a sense of achievement and provide opportunities for intellectual, social and physical skills development in a safe environment. In her proposed care plan she recommends the applicant participate in activities for four hours each day.[29]
[29] R3, Document 18: Supplementary report of Dr Schulz-Robinson, page 361.

Ms Schulz-Robinson was asked to specify if the applicant required 1:1 or 2:1 support for outdoor activities. Whilst she noted that the applicant’s support worker would need to carry medication and oxygen during any activities outside the home, it was for the applicant, her mother and her support workers to make that decision on a case-by-case basis.
She was also asked how often the applicant would be prevented from participating in scheduled activities due to fatigue. Ms Schulz-Robinson estimated this may be around two to four times per month, having observed that the applicant would be tired after engaging in activities but become more interactive with those around her. In both her reports she noted that the Epilepsy Foundation publications observe that inactivity and boredom can have a negative impact on seizure activity.
In regard to the applicant’s family, she stated “the impact of the Applicants health problems on family life cannot be overestimated”. The applicant talked about her sisters during her assessment even though she rarely saw them.
Ms Schulz-Robinson described the applicant’s story about her graduation as sad when told her graduation was only attended by her mother and carers. Due to the applicant’s social isolation and lack of social skills, she had no social group or other family to invite.
Evidence of Diane Core
Diane Core, Psychologist, performed a psychometric assessment of the applicant’s cognitive capacity and adaptive behaviours over two days in April in 2021 and provided a subsequent report upon which she was questioned at the hearing.
Ms Core described the psychological impacts of the applicant’s disability on her ability to navigate daily living activities, social connection and communication. She identified the applicant as having a “complex intellectual profile” which, as she explained, meant that the applicant’s cognitive performance spread across a diverse range of scores.
Ms Core confirmed that she reported the applicant as presenting with an intellectual disability and her visual, spatial, fluid reasoning, working memory and processing all scored in the “extremely, extremely low range”.[30]
[30] Transcript of Proceedings, page 92 lines 2 to 4.
In regard to her adaptive behaviour assessment, Ms Core stated that in the conceptual domain of communication, essential academic and communication the applicant had an age equivalent of less than five years old.
Ms Core stated the human need for a person to be able to interact and engage socially in the world, and that to engage in activities such as horse-riding was necessary for the applicant to have quality and meaning in her life.
In her report Ms Core stated:[31]
“Seizures necessitate full time care, 24 hours per day, 7 days per week. The nature of VXVL’s condition requires x2 full time carers, and a community nurse to manage her medication so that M can return to suitable employment to allow the family to resume to some normalcy financially.”
On cross-examination Ms Core admitted that it was not within her scope of professional scope of expertise to comment on how many people were required to support the applicant and that the opinions in her report had also relied on information provided by other health professionals.
[31] ST1: Psychometric Report of Dr Diane Core.
Evidence of Ms Georgia Fairhall
The applicant called Ms Georgia Fairhall, a support worker of the applicant for approximately two years. Ms Fairhall told the Tribunal she worked two nights and one-and-a-half days per week since finding her previous four nights a week too much.
Ms Fairhall described her night shifts as very busy, estimating that she would average two or three hours of broken sleep between responding to seizures and attending to the personal needs of the applicant. She recounted the applicant experiencing 17 seizures during a recent night shift, and a subsequent ten seizures the following night.
Ms Fairhall stated it was quite exhausting to be watching the applicant at all times in case of a seizure. When not caring for the applicant she would support the applicant’s mother with organising medical supplies, appointments and trying to find new carers.
When asked whether the applicant required 2:1 support for social activities, Ms Fairhall stated that she did as the applicant always had seizures in the car when travelling and frequently fell asleep as a result of her medications. Therefore a person other than the driver was needed to administer oxygen and manage the applicant’s post-seizure movements.
In her opinion, Ms Fairhall stated 2:1 support was also needed at the applicant’s home sometimes in circumstances such as oxygen bottles running out during a seizure or the applicant falling in an awkward position with food in her mouth.
Ms Fairhall confirmed that she took the applicant to the beach on occasions by herself but would not take her swimming without a second support person present. Further, that she would take the applicant to activities such as dancing or swim classes by herself as there were instructors trained in working with people with disabilities present.
In regard to the support required for the applicant to use the bathroom, Ms Fairhall stated the applicant needed assistance to access and use a bathroom wherever it may be. The applicant, she said, would use the upstairs bathroom during the day because the stairs were more convenient to access than the two doors to the outdoor bathroom.
Evidence of Ms Kaitlyn Haugh, Occupational Therapist
Ms Kaitlyn Haugh, Occupational Therapist, assessed the applicant on 22 March 2022 at the request of the respondent. She prepared a subsequent report dated 6 May 2022 answering specific questions about the applicant’s requested supports based on her review of extensive documentation and videos provided to her as well as her own observations of the applicant.[32] She also presented oral evidence on her findings at the hearing.
[32] R3, Document 16: Supplementary report of Dr Schulz-Robinson dated 19 April 2022.
Ms Haugh spoke to the unpredictable onset of the applicant’s seizures and the applicant’s inability to maintain her own safety both during and after seizure activity, stating “I definitely believe that she is constantly at risk”.[33]
[33] Transcript of Proceedings, page 126 at lines 25-26.
Ms Haugh stated that the applicant’s seizures were “very unpredictable, and very frequent”, varying in both frequency and severity. Ms Haugh stated that the applicant experiences seizure activity 94% of the time and requires support and supervision on a 24/7 basis.
The applicant, in her opinion, has an extremely limited capacity for independent mobility and will always need to have someone with her close by to mobilise. In the very short periods when the applicant was not experiencing seizure activity, she would be able to stand up and walk without physically being propped up or supported, but even in such case would nonetheless need someone with her in case of a seizure.
To support the applicant’s mobility, Ms Haugh recommended 1:1 support 24/7 provided by both formal support workers and M, which she was already accessing via M self-funding support workers. Ms Haugh stated that this “reviewed and addressed immediately” as M was experiencing significant carer burnout and financial hardship.
The applicant’s mother, she observed, was providing the care she needed but was experiencing quite significant carer burnout due to the high level of care required. Due to the limited formal support available, M was unable to engage in work or other activities.
Ms Haugh summarised her recommendations of support hours for the applicant as 12 hours formal support per day, and four hours informal support from her mother per day. In her professional opinion, M would be able to return to work within a regular 7am-7pm timeslot, and care for the applicant for an hour at 6am and a further three hours in the evenings.
In relation to overnight support, Ms Haugh recommended 1:1 passive support, five nights per week to be trialled with equipment to assist the support workers such as alert devices. The applicant, she said, was currently not using and any assistive technology or equipment and was recommended to undergo an assistive technology review with an occupational therapist and physiotherapist to identify and implement suitable aids to improve her safety.
Ms Haugh reported on the physical and mental fatigue experienced during her assessment, which was, for the applicant, on a “good day”. She observed the applicant perform the “six-minute walk test” whereby she walked a distance of six metres as many times as possible within a six-minute time frame. The applicant was able to complete this distance 30 times, totalling 180 meters. Over the course of the test Ms Haugh observed that the applicant’s body movements became increasingly uncoordinated and uncontrolled, her cognitive function declined and she was unable to process or respond to questioning or prompting due to fatigue.
The applicant was, with physical hands-on support, able to walk a maximum of 250 meters to access the local beach, however on arrival was heavily fatigued, unable to engage in any further activity and needed to be driven home. Ms Haugh stated due to her seizure activity the applicant is unable to access the community 94% of days and has a significantly limited capacity to engage in desired and required activity.
Ms Haugh acknowledged that evidence-based research has found that:
“types of sport that carry no significant risk, such as team sports, dancing, and golf, can be recommended for all patients with epilepsy. An individual risk assessment should always be carried out for moderate-risk types of sport such as alpine skiing, gymnastics, and swimming, as well as high-risk sports such as climbing, motor sports, and surfing.” [34]
[34] R3, Document 16: Supplementary report of Dr Schulz-Robinson dated 19 April 2022.
Ms Haugh recommended the applicant engage in physical exercise with physiotherapists and exercise physiologists, where she would require one support person with the practitioner as the second support person. She referred to exercises such as hydrotherapy to gradually increase the applicant’s endurance and tolerance for exercise.
Ms Haugh stated that it would be highly beneficial for the applicant to engage in dancing and drama activities, however; surfing and horse-riding carried a higher risk to her safety and deferred any opinion to the determination of medical practitioners.
In relation to the requested home modifications, Ms Haugh observed the applicant’s home to be an open-plan living with a sliding door to the outdoor decking where her bedroom and bathroom are attached to the main house as a flat.
Ms Haugh noted the applicant’s bedroom was moved from the upstairs of the home to the flat to reduce her need to use the stairs for safety purposes. In the flat, she said, the applicant did not have any privacy due to her supports sleeping in the same room.
Overall Ms Haugh found the layout of the home suitable but that modifications needed to be considered to facilitate the applicant sleeping in adjacent but separate rooms to her supports.
She stated that whilst modifications are reasonable and necessary to increase the applicant’s privacy and dignity, “the currently requested home modifications will not be beneficial to VXVL or in alignment with good practice as the addition of an extension to the main house is unnecessary as VXVL already has an established bedroom and bathroom area in the flat attached to the main house”.
Ms Haugh considered potential alternatives to extending the main house such as enclosing in part of the adjacent decking to create another room. She recommended modifications to the applicant’s current arrangement that would use the existing structures and plumbing, thereby substantially reducing the cost of modification.
Evidence of Dr Gregory Carmen
Dr Gregory Carmen, Consultant Paediatrician, provided letters to the Agency including a report of 28 July 2021 answering questions put to him by the Agency based on his assessment of the applicant.[35]
[35] R2, ST1: Letter of Dr Carmen dated 1 April 2021, page 383; ST1: Letter of Dr Carmen dated 1 September 2021, page 604; ST6: Report of Dr Carmen dated 28 July 2021, pages 591-592.
Dr Carmen explained that the applicant has a very severe drug-resistant epilepsy and consequently had very high rates on non-attendance at school. This frequent interruption, in his opinion, made school participation non-functional and of no great benefit to the applicant.
Dr Carmen outlined the 24/7 care the applicant required and day-to-day challenges of her condition. On many days, her function level is well below that of a three-year-old. He identified frequent pain related to her Vagal Nerve Stimulator and varying levels of communication and responsiveness depending how may seizures she is having.
He referred to the social isolation the applicant faced from her peer group and limited opportunities to socialise. In his opinion, external activities of interest to her such as horse-riding and surfing are important for her emotional well-being, physical health and to help ameliorate the discomfort of her conditions.
In reference to carer impacts to the applicant’s mother, Dr Carmen stated:
“It is in VXVL’s best interests that her mother’s emotional and physical health be maintained, as she is the most important person in her life.”
Evidence of the applicant’s mother
The applicant’s mother M gave evidence at the hearing. She recounted her difficult experience caring for the applicant as a single parent for the previous seven years, and of her wish to return to work whilst still providing support for her daughter.
She confirmed she had trialled seizure alert devices between 2013 and 2014 including a seizure alert mat and an oxygen and heart-rate monitor. She had stopped using them as the applicant would stiffen rather than shake during a seizure and not trigger the mat, and the monitors would often alarm due to other sleep states when there was no seizure. M found these devices made her situation “worse” and did not reduce the amount of time she had to spend helping the applicant.
In submissions, M stated that at the time of the decision under review the applicant’s father was no longer spending time with the applicant since he had previously visited on Sundays.[36] She shared the primary care of the applicant’s older sisters and had sole primary care of the applicant for several years since the applicant’s father struggled with her complex daily care needs.[37] In addition to managing the applicant’s care needs, M had been home-schooling the applicant since the previous year when the applicant’s condition made disability-specific school attendance too dangerous to attend.[38]
[36] R3, Document 12: Applicant’s response the Respondent’s Statement of Facts, Issus and Contentions, page 124.
[37] R2, Document ST1: Report of Tara Quinn dated 6 March 2020, page 278.
[38] R3, Document 12: Applicant’s response the Respondent’s Statement of Facts, Issus and Contentions, page 160.
M confirmed she had no family support and lived in a socially isolated environment with her daughter. In the previous year she had enrolled in a part-time counselling diploma but had to withdraw due to the demands of the applicant’s needs. She intended to return to full-time work using her science qualifications which would require 24/7 support for the applicant.
In explaining her request for 24/7 support assistance, M stated:[39]
“If I'm going to have the life that I'm hoping to have and the life that she's hoping to have, I won't be able to do that if I'm tied to looking after her one-on-one care which she needs every second, as you know, it's not flexible to be there in that time and providing that care at that time in a very real way… I would prefer to look after her informally for both of our wellbeing and do the other jobs that are required to look after her because I'm really good at them and, you know, I don't believe that someone else can do those things.”
[39] Transcript of Proceedings, page 172 at lines 16 to 25.
It was both hers and the applicant’s preference, she said, that her daughter remain living with her “for as long as possible” with the appropriate supports for her independence rather than moving her to Supported Independent Living (SIL).
M confirmed the complex home modification assessment she provided to the respondent and upon which she relied was produced by Ms Tara Quinn, CHM Assessor and Occupational Therapist of Redtail Therapy in 2020.[40] The respondent had offered to fund an updated assessment by Ms Quinn or another person of the applicant’s choosing but was refused.
[40] R2, ST1: Complex Home Modification Assessment Template dated 16 June 2020, pages 315 to 336.
M stated she subsequently had a builder assess the alternate home modifications proposed by Ms Quinn and Ms Haugh, and that she was advised the latter would be more expensive than Ms Quinn’s proposal. This was due to the existing roof not being of a legal height for an indoor space and additional safety requirements needing to be built.
Evidence of Chris Walker
Chris Walker, Builder, was engaged by the applicant and provided a preliminary construction cost estimates to create a new bedroom and bathroom in the applicant’s home dated 20 May 2020 and 10 November 2022.[41]
[41] R2, ST1: Letter of Chris Walker Constructions, pages 288 to 289; R3, Document 13.
Mr Walker discussed the remodelling of the existing back bathroom and connecting deck area as well as modification to the back sliding door and stairs to the back of the house and compared this to the cost of a new smaller extension and bathroom addition to the front of the applicant’s home.
The former, he stated, would require demolition and reconstruction of the existing bathroom, raising the roof and new roof coverings and insulation in order to meet the relevant building codes for a habitable area. Decking boards would need to be removed and replaced with flooring with new floor coverings with modifications to the sub-floor framing, structural posts relocated and new sliding doors and windows needing to be installed. Mr Walker estimated this would cost around $100,000 and still presented the risk of complications around waterproofing and maintenance in the future.
On referral by Mr Walker, a detailed quotation for the ensuite was made by Design Evolution Town Planning and Building Design in consultation with Byron Bay Planning and Property Consultants. The estimated cost totalled $61,204.00.[42]
[42] R2, Document ST1: Byron Bay Planning - Floor Plan dated 6 May 2020, page 309.
Evidence of Dr Stephen Malone
Dr Stephen Malone, Paediatric Neurologist and Senior Medical Officer at Queensland’s Children’s Hospital, was a treating specialist of the applicant and provided reports and letters evidencing the applicant’s condition.[43]
[43] T5: Report of Dr Stephen Malone dated 11 March 2020; T6: Letter from Dr Stephen Malone dated 9 September 2020; ST2: Letter from Dr Stephen Malone, at page 542.
Dr Malone referred to the applicant’s disability as a “very rare” genetic disorder impacting her intellectual ability, her motor and adaptive behaviour, her socialisation and her capacity to perform independent daily living activities.
He stated the applicant had a “very severe” expression of the gene abnormality, likely being one of the more severe he had seen due to her extremely frequent seizures and overall regress in her abilities.
In his opinion, the applicant’s mother and support workers were doing a very good job but carried a huge risk of carer burnout when the applicant’s care was left to a single person. The only improvement, Dr Malone identified, would be for more people available to assist in situations such as the night times when the applicant had most of her seizures and required her sheets changed three or four times a night.
Dr Malone reported on the limited success of extensively trialled treatments and therapies, stating they would not be able to improve the applicant’s seizures in any meaningful way. Dr Malone believed the best approach was to try and minimise the impact of her seizures and improve the applicant’s general condition and quality of life.[44]
[44] T6: Letter from Dr Stephen Malone dated 9 September 2020; Transcript of Proceedings page 186 lines 10 to 14.

When asked for his recommendation for the applicant’s level of support workers he described it as an individualised need, her requiring consideration that the applicant’s mother is a single parent who needs a life of her own where she can work, study and contribute to society.
Dr Malone stated 1:1 care is “definitely appropriate” for the applicant with modification required in certain situations, such as when the applicant goes out and one person is driving and another needed to assist in the car or during the night when the applicant’s seizures are most frequent.
CONSIDERATION
Support worker assistance
Each witness in this matter has spoken to the constant level of supervision and care needed to manage the applicant’s condition, and there no doubt left before the Tribunal that the applicant requires 24/7 care. The evidence conclusively states, and the respondent does not dispute, that a minimum level of 1:1 care is required to assist the applicant during the 16-hour daytime period. The question is whether it is reasonable to expect the applicant’s mother to provide care for two of those hours each day.
Expert witnesses were asked to weigh in on this question. Ms Haugh found it reasonable to expect M to provide care for four hours each day, and Dr Schulz-Robinson saw no reason why two hours each day could not be expected.
Dr Malone deferred any conclusive recommendation to the needs of the applicant’s mother, who was of the firm opinion she can no longer sustain her role as a carer for the applicant even for two hours each day notwithstanding how those hours may be spread out over a week.
Section 34(1)(e) requires consideration of what is reasonable to expect the applicant’s family to provide. Rule 3.4(a) is relevant to the period since the decision under review until the applicant’s 18^th birthday in September 2022 and Rule 3.4(b) thereafter.
Rule 3.4(a)(i) is a broad proposition and the applicant’s mother has clearly provided such substantial care and support. There is sufficient evidence that the applicant is has significant care needs in relation to her epileptic seizures and intellectual disability such that Rule 3.4(a)(ii) is satisfied.
The applicant’s mother has borne substantial caregiver responsibilities managing the severe and complex nature of the applicant’s condition. She describes herself as “sleep deprived and depressed” when she provides 1:1 formal support for her daughter and unable to attend to her own self-care needs.
M’s experience is consistent with the stated experiences of the applicant’s other carers, who refer to the constant demands of the unpredictable and severe nature of the applicant’s seizures and the difficulties in providing such care for multiple nights a week and over an extended period of time.
There is overwhelming evidence that applicant’s care needs present real risks to the well-being of her mother and carers, and that this in turn compromises their ability to care for her. These risks have been realised in the carer burnout, sleep deprivation and depression referred to in the stated experiences of M and the applicant’s carers and in observation by treating professionals.
Rule 3.4(a)(iii) is satisfied.
In her report of May 2022 Ms Haugh spoke to the needs of the applicant as follows:
“Overall, VXVL’s function is impacted by physical and cognitive deconditioning and there are interventions available which are designed to increase her overall function and independence albeit in VXVL’s case these improvements will only be to a minimal effect due to the nature of her disabilities. The above outlined interventions are noted to improve VXVL’s quality of life and agency in her life; however, it is noted even with the implementation of these interventions VXVL will be unable to independently function without the requirement of 24/7 1:1 support provided in a combination of formal and informal supports.”
Extensive submissions evidence the constant risk of harm to the applicant as a consequence of her seizures and the subsequent need for her unbroken supervision and care. Whilst the applicant’s functional capacity may be unable to be improved upon, the provision of 1:1 support is an undisputed requirement to mitigate this risk.
Rule 3.4(a)(iv) is satisfied.
Observational assessments speak highly to the care M has provided in caring for her daughter, as well as raising concerns for the carer burnout brought on by years of physical, emotional and financial stress. In addition to her child’s care, M currently performs every non-carer role for the applicant and herself and including domestic and administrative tasks that she intends to continue with once she has returned to the workforce.
M submits that her ability to care for the applicant is compromised by lack of sleep and impacts to her physical and mental health. Further, that providing formal care for her daughter limits their relationship as mother and daughter. These impacts are reflected in the statement of the applicant’s sister:[45]
“The worst part about this is that VXVL's quality of life is deeply diminished with a lack of outside care. Having family as a sole means of care means that we can't interact and treat her like a true member of the family. Despite mum's incredible capability and resilience, constant care and sleep deprivation drains the energy most mothers use to interact and be with their children. If VXVL is to get meaningful interactions and a greater quality of life a community of carers is essential.”
[45] R2, Document ST1: Statement of Lived Experience dated 20 April 2021, page 527.
Rule 3.4(b)(i) is satisfied.
The Tribunal accepts the applicant’s evidence she is able to receive supports by the way of other family members or informal networks. M has provided evidence her role as a carer has limited her educational opportunities as she has twice attempted to enrol in studies and subsequently had to withdraw. M considers she is limited from establishing support networks within her community when she is tethered to her home providing her daughter’s care.
Rule 3.4(b)(ii) is satisfied.
There is no evidence that the applicant could have her level of independence reduced with increased caregiver support. The Tribunal accepts it is the applicant’s wish to remain in her mother’s house independent of SIL accommodation and retain some degree of independent day-to-day living with her mother. It is the 24/7 support her mother applies for that, M states, is required for the applicant to be afforded such independence.
Rule 3.4(b)(iii) is satisfied.
The Tribunal finds the applicant requires 1:1 support worker assistance provided for 16 hours during the day, seven days a week and this has been reasonable and necessary since the date of the decision under review.
With reference to paragraphs [13] and [14] in the reasons for this decision, the applicant’s mother has expended funds and provided hours of care for and on behalf of the applicant that ought to have been funded in the applicant’s statement of participant supports.
Overnight supports
The respondent accepts the following overnight supports are reasonable and necessary per section 34(1) of the NDIS Act:
(a)8 hours active overnight care, 7 nights per week for first 6 months; and
(b)8 hours inactive overnight care, 7 nights per week for following 6 months.
The respondent submits that further trialling of seizure alert devices is needed before eight hours of active overnight support can be provided on an ongoing basis. Several years have passed since the applicant’s mother is known to have tried such devices and she spoke to only two such measures used- namely a seizure mat and oxygen/heart rate monitor.
Given the extensive period of time since the applicant has trialled alert devices and the limited number of devices used, it is reasonable to suggest engagement in an assistive technology review in consultation with an occupational therapist and physiotherapist.
Further, the applicant intends to sleep alone and no longer with a support worker or M in the bedroom with her. Such an arrangement enlivens an issue around whether a support worker would be awoken in the event of a seizure and this risk must be addressed.
The respondent submits a six-month trial period providing active overnight support while alert devices are trialled is reasonable, and on the evidence provided, the Tribunal agrees.
Social, community and civic participation supports
The applicant submits that 6 hours a day, 5 days a week is reasonable and necessary for her to be able to engage in social and independent activities of daily living. The respondent considers more than 10 hours per week is prevented by under Rule 5.1(d) of the NDIA Rules because there is insufficient evidence that the costs of attending the sessions goes beyond day-to-day living costs and are not attributable to the applicant’s disability support needs.
Ms Broer recommends the applicant be participating in activities six hours a day, five days a week. She identifies the social and therapeutic benefits of recreational activities that meet the high support needs of the applicant including swimming and surfing, stating that these will improve the applicant’s endurance, coordination and communication skills.
Dr Schulz-Robinson states that the applicant comes from a family that values outdoor activities, surfing and art and that she wants to participate in the activities of her family values.[46] The benefits of physical activity of interest to the applicant are supported by professionals consulted in this application, with reported post-participation improvements to the applicant’s behaviour and alertness.
[46] R3, Document 15: Report of Dr Schulz-Robinson, page 204.
Concerns are expressed for the applicant’s tolerance for physical activity, particularly in such circumstances as reportedly requiring a two-hour rest including a nap after a 30-minute dance class.[47] Ms Loadsman, Ms Schulz-Robinson and Ms Haugh maintain the applicant is unable to maintain her own safety which ought to be considered in the context of higher-risk activities of horse-riding and surfing.
[47] R3, Document 16: Report of Kaitlyn Haugh dated 6 May 2022, page 249.
Pursuant to section 33(5)(a) of the NDIS Act the activities will assist the applicant to achieve her goals and aspirations which relevantly include:[48]
Goal 1: Increasing participation in social activities to develop a peer network.
Goal 2: Improving health and fitness by engaging in physical activity
[48] R2, ST1: Letter from Tora Crockford, undated, pages 512 to 513.
The Tribunal considers that applicant attends groups specifically designed for individuals with high support needs. There is highly persuasive evidence of the social, emotional and physical benefits for the applicant in the context of her disability support needs from medical expert witnesses which is supported by positive feedback on her from her treating professionals.
Rule 5.1(d) does not apply.
The Tribunal must also determine whether the appropriate level of support is 1:1 or 2:1 when applicant attends activities including car travel.
Ms Broer submits that 2:1 support allows for the applicant to participate in group sessions and benefit from socially interacting with her peers.[49] The Tribunal considers there is limited evidence for other opportunities the applicant has for the social interaction she needs and therefore gives this considerable weight.
[49] R3, Document 1: Report of Ms Angelina Broer, dated 9 June 2022.
The Tribunal is presented with substantial evidence of the need for the applicant to have two people with her in the car in transit two and from activities. She can have a seizure at any time and would require immediate physical assistance including provision of oxygen.
The Agency’s submissions that a person in a public place could assist to make an area safe or call an ambulance cannot be described as a reasonable suggestion. It does not contemplate the circumstances of emergency left to an unaccompanied driver to deal with should the applicant have a seizure and the dangers they, or indeed any other drivers or pedestrians, are exposed to were that to occur.
Considering the high predictability that the applicant will have a seizure whilst in the car, it is necessary to ensure she has adequate support in place for her to be properly attended to by trained support workers who are familiar with her safety management plan. It is not reasonable to expect a support worker to deal with the applicant alone while engaging a nearby member of the public, if there were one, to assist.
Likewise, the disability-trained support staff at some of the applicant’s activities cannot reasonably be relied on as the applicant’s second support because they facilitate the activities for all participants in the class and should not be relied on to provide personal 1:1 care.
The applicant therefore requires 2:1 support for her social activities including car travel.
In determining the appropriate number of hours, the Tribunal is provided with invoices from the applicant’s providers. An invoice provided by the applicant’s Surf School confirms her attendance at 13 surfing sessions over an approximately ten-week period.[50]
[50] R2, Document ST1: Surf School Invoice dated 7 November 2020, pages 518 to 519.
The applicant’s Dance Theatre school quotes a total of 686 hours for the applicant’s participation over 12 months during 2021-2022.[51] This breaks down to approximately 13 hours per week. Her swimming and horse-riding groups do not detail how many hours she participated.
[51] R2, ST1: Dance Theatre quote, undated, pages 512-514.
The Tribunal accepts the recommendation of Dr Schulz-Robinson for four hours per day of activity is reasonable. The Tribunal considers that M states she is able to provide some of the 2:1 support for activities and that the applicant would not likely be physically able to attend 20 hours per week, each week. For this reason, the Tribunal makes no further transport allowance for 2:1 support for 20 hours for social activity.
The Tribunal finds that 20 hours per week with 2:1 assistance is reasonable and necessary be funded to support the applicant’s safe participation in future social activity.
Home modifications
The applicant seeks home modifications of an ensuite to the lower floor of the main house in the circumstances of her maturity and increasing support needs, so that she may continue living with her mother whilst retaining some form of independence.
The respondent agrees that the applicant requires some modification to her existing bedroom arrangement for greater dignity and privacy but submits that the ensuite would not represent value for money such that section 34(1)(c) of the NDIS Act is not satisfied.
Relevant to section 34(1)(c) is Rule 3.1 of the NDIS Rules. Rule 3.1(a) requires the CEO to consider whether there are comparable supports which would achieve the same outcome at a substantially lower cost.
The outcome sought by the applicant can be summarised as follows:
(a)The privacy, dignity and independence of her own bedroom;
(b)The ability to independently mobilise to a bathroom;
(c)To safely access all areas of her home by not needing to use stairs to access the internal bathroom or sliding to access the external bathroom;
(d)To be sustainably integrated with her mother in her main home so that she can continue living with her in the long-term; and
(e)Avoid the alternative of moving into formal SIL accommodation at a significantly higher cost.[52]
[52] R2, ST1: Report of Ms Jana Loadsman dated 7 April 2021, page 343.
The applicant previously used a bedroom upstairs until the stairs were deemed a safety hazard to her, although she will still prefer to use it during the day rather than have to go the further distance outside. Use of either bathroom is a “constant choice” between using the sliding door or stairs, both of which require a high degree of assistance for her to access.[53]
[53] R3, Document 12: Applicant’s response to Respondent’s Statement of Facts. Issus and Contentions, page 132.
The applicant’s mother submits that it is her wish to keep the applicant living with her as long as possible “because I can help to care for her better here in those kind of managerial ways with affection and love in a family way. She loves this house, she was born in this house and she wants to stay here with me. We get on with each other very well.”[54]
[54] Transcript of Proceedings, page 152 lines 39-44.
In evidence Ms Haugh stated “This current bedroom and sleeping situation are not suitable for VXVL long term as she is not awarded any privacy from her formal and informal supports” but maintained her recommendation that the requested home modifications were reconsidered to include existing structures.
When questioned on her qualifications to comment on home modifications Ms Haugh admitted she had participated in some relevant professional development courses she had not completed the full home modification qualifications.
In Ms Haugh’s opinion, the applicant often needed hands-on support for toileting and would still need the support to go to the bathroom no matter where it is located. To this point the Tribunal considers that the applicant seeks independence to mobilise to access the bathroom, not to seek fully independent toileting:
“she does need assistance to go to the toilet or anywhere at all times. But I'm asking for the ensuite to be within the house so she can have a bedroom in the house again without accessing the upstairs toilet through the night and during the day because it will just mean that when she's well enough, she'll be able to some extent self-mobilise between the bedroom, the toilet and the rest of the house, the kitchen and the lounge room. You know, she'll have someone with her but she won't need somebody going and opening doors for her and it's not as far, it's less taxing for her. But I think because it's such a frequent journey between the bedroom, bathroom and couch, you know, in the lounge room and kitchen that it's a really high value modification that will just facilitate her life and connection with the me and whoever else is here. You know, she doesn't have to be out the back and isolated.”[55]
[55] Transcript of Proceedings, page 153 lines 6-20.
The Tribunal accepts that both the ensuite and modification to the outdoor area will provide the applicant with long-term benefits of dignity, privacy, independence and safer bathroom access over the lifetime she intends to spend living in her mother’s house.
The Tribunal does not accept that the ensuite will provide the applicant with the reduced risk of falls associated with use of the back sliding door as the assessment of Ms Quinn states: “Access to this bathroom would be directly off VXVL’s bedroom and accessed by a sliding door”.[56]
[56] R2, ST1: Complex Home Modification Assessment Template dated 16 June 2020, page 332.
The Tribunal does accept that the ensuite will provide the applicant with the reduced risk of falls associated with use of the internal stairs, the independence of being able to self-mobilise to the bathroom and the long-term closeness and sustainability of living with her mother in the main house.
Mr Chris Walker submits that the respondent’s proposal to enclose an outdoor area is a substantially more expensive option to meet compliance specifications of the Building Code of Australia and carries risk of future complications.
The respondent has not provided further inquiries into the costing of enclosing the outdoor area to create a separate sleeping area for the applicant’s support workers or the ensuite. The Tribunal is only able to consider the quotation and evidence of Mr Walker.
There is insufficient evidence before the Tribunal to be satisfied that:
(a)modifications to the outdoor area are a comparable support that would achieve the same outcomes to those listed at [164] above; and
(a)the cost of such modifications would be of a cost significantly lower than the ensuite bathroom.

Rule 3.1(a) is satisfied.
Rule 3.1(b) considers the life-stage outcomes and long-term benefits to the applicant. The applicant has had to move her bedroom to the flat outside due to her condition while her mother stays alone in the main house which becomes empty if she is sleeping in her daughter’s bedroom.
The Tribunal also has regard to section 4 of the NDIS Act which sets out “General principles guiding actions under this Act”:
(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…
(12) The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.
(12A) The relationship between people with disability and their families and carers is to be recognised and respected”.
The applicant’s disability constrains the dignity, privacy and independence she is afforded. She is supervised 24/7. Her mother is the only family she lives with since her sisters and father have moved out some years ago. The benefit offered by modifying the house so that she can be independent whilst living with her mother as a family under the same roof should not be underestimated.
The applicant’s mother, support workers and occupational therapists attest to the further independence offered by the applicant being able to mobilise between the bathroom, bedroom, lounge and kitchen in the main home rather than requiring physical assistance to negotiate the stairs or sliding door.
The Tribunal accepts the evidence of Dr Malone that the applicant’s condition is degenerative and will continue to decline over time. Further, that the most appropriate supports for the applicant will improve her general functioning and quality of life.
The Tribunal finds there is sufficient evidence that the ensuite will substantially improve the applicant’s independence and will allow her to remain living closer to her mother in the long-term.
Rule 3.1(b) is satisfied.
Rule 3.1(c) requires positive proof that a requested support is likely to reduce the funding of future supports for the applicant. In Warwick and National Disability Insurance Agency [2023] AATA 3093 the Tribunal held that the degenerative nature of the applicant’s disease would make consideration of future costs problematic for a decision-maker.
The applicant submits ensuite bathroom represents a lower-cost alternative to formal SIL supports she is likely to require in the future if she is unable to continue living with her mother in more suitable accommodation.
The Tribunal has not been provided any estimated costs of formal SIL support and finds that such an estimate, or indeed any future costs that could be avoided, highly uncertain due to the applicant’s worsening condition.
Rule 3.1(c) is satisfied.
Rule 3.1(d) and (e) are not considered applicable.
There is no dispute before the Tribunal that the applicant will have greater independence, dignity and privacy sleeping alone rather than with her mother or support worker in the room with her.
Rule 3.1(f) is satisfied for the reasons at [171]-[172] above.
The Tribunal in LZMX and National Disability Insurance Agency [2021] AATA 378 at [158], found that the value for money criteria involves a “balancing process” and “a sense of proportionality” in considering the benefits achieved and the cost of alternative support.
There is highly persuasive evidence that the outdoor area does not offer the benefits reasonable and necessary to support the applicant’s disability by improving her privacy, dignity, independence and quality of life.
In Harris and National Disability Insurance Agency [2022] AATA 276 when calculating the appropriate level of funding for the bathroom modifications the Tribunal found that consideration should be given to quotations provided by the applicant.
The Tribunal is satisfied the applicant in this matter has provided a detailed fee proposal from Mr Chris Walker in consultation with Town Planners and Surveyors, and this evidence is sufficient for the Tribunal to inform itself of an estimated cost of the ensuite proposed and weigh this against the respective benefits.
On balance of the benefits and costs of the home modifications discussed above the Tribunal finds that the appropriate home modification is an ensuite in the applicant’s main home area.
24 Month plan
The applicant has requested a 24-month plan. The Tribunal refers to the evidence of Dr Malone at paragraph [198] above of the applicant’s deteriorating condition. A 12-month plan provides for more frequent review of the changing needs of the applicant and is therefore the preferable approach.
DECISION
Pursuant to section 42C(2) of the AAT Act, the Tribunal decides that the Respondent’s decision made on 10 February 2021 under section 100(6) of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act) be set aside and remits the matter for reconsideration in accordance with directions that:

A. From 10 February 2021 the applicant’s statement of participant supports specifies that the reasonable and necessary supports include:
(a)An increase in Core Support – Daily Activities budget to access assistance with self-care, comprising:
(i)16 hours support worker at the high intensity (level 2) rate for 16 hours per day, seven days a week for 12 months;

(b)An increase in Core Support – Daily Activities budget to access:
(i)8 hours active overnight care at the high intensity (level 2) rate for 7 nights a week for 6 months; and
(ii)8 hours inactive overnight care at the high intensity (level 2) rate for 7 nights a week for 6 months

B. Within 28 days of this decision, the applicant’s statement of participant supports specifies that the reasonable and necessary supports include:
(a)An increase in Core Support – Social Community and Civic Participation to access social groups for 20 hours per week with 2:1 support worker assistance, including travel time and including the activities of:
(ii)Surfing
(iii)Horse riding
(iv)Dancing
(v)Drama

(b)Approval for Home Modifications involving the addition of an ensuite bathroom to a bedroom in the main house as specified by Ms Tara Quinn in her Complex Home Modification assessment dated 16 June 2020 to the amount of $61,204.00;

C.      Assistive Technology Assessments should be conducted and funded for the applicant to trial seizure alert devices for a 6-month period;
D.      The support at (A)(b) above is to be reviewed 6 months from the date on which the support is included in the applicant’s statement of participant supports to allow for the applicant to trial and the respondent to assess the suitability of seizure alert devices; and
E.      The date by which the Respondent must reassess the applicant’s plan is to be 12 months after the date on which the supports in paragraphs (a)-(d) above are included in the applicant’s statement of participant supports.
I certify that the preceding 214 (two hundred and fourteen) paragraphs are a true copy of the reasons for the decision herein of Senior Member P J Clauson AM.
……..…………[SGD]………………..
Associate
16 January 2024