EXBL and National Disability Insurance Agency
[2024] AATA 1543
•7 June 2024
EXBL and National Disability Insurance Agency [2024] AATA 1543 (7 June 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2022/6886
Re:EXBL
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:R Cameron, Senior Member
Date:7 June 2024
Place:Melbourne
Pursuant to subsection 43(1)(b) of the Administrative Appeals Tribunal Act 1975 (Cth), the Tribunal varies the decision under review in this application, as follows:
(a)Assistance with self-care activities, high-intensity, weekday;
i.20 hours per week (4 hours per day x 5 days);
(b)Assistance with self-care activities, standard intensity, weekday;
i.25 hours per week (4 hours per day x 5 days; + 5 hours once a week);
(c)Assistance with self-care activities-standard -intensity-On weekdays when the applicant is not at school;
i.141 days at 9 hours per day;
(d)Assistance with self-care activities - standard-intensity, Saturday;
i.4 hours x 52 weeks;
(e)Assistance with self-care activities, standard-intensity, Sunday;
i.4 hours x 52 weeks;
(f)Assistance with self-care activities-high-intensity, Saturday;
i.9 hours x 52 weeks;
(g)Assistance with self-care activities-high-intensity, Sunday;
i.9 hours x 52 weeks;
(h)Active overnight with high-intensity support worker;
i.7 nights per week.
.................................[sgd].......................................
R Cameron, Senior Member
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – participant supports – reasonable and necessary supports which will be funded – funding for carers and supports for high complex needs – request for parents to receive funding as parents – risk of carer burnout - value for money assessment – value relative to both the benefits achieved and the cost of alternative support – decision varied.
Legislation
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
Social Security Act 1991(Cth)Cases
ZNDV and National Disability Insurance Agency (2014) 144 ALD 652
REASONS FOR DECISION
R Cameron Senior Member
INTRODUCTION AND PROCEDURAL BACKGROUND
By an application made to this Tribunal on 22 August 2022 the applicant sought review of a decision made on 25 July 2022 by a delegate of the Chief Executive Officer of the respondent confirming a previous decision approving a statement of participant supports that was approved on 15 June 2022.
The respondent agency on 15 June 2022 had approved a plan containing the statement of participant supports referred to in the previous paragraph (‘the 15 June 2022 plan’).[1]
[1] References to “T” documents are references to documents required to be given to the applicant under s 37 of the AAT Act; T8.
Following consideration of a further internal review request by another delegate of the Chief Executive Officer of the respondent a new plan was created for the applicant which commenced on 6 June 2023 (‘the reviewable decision’).
By operation of s 37(3) of the National Disability Insurance Scheme Act 2013 (Cth) (‘the NDIS Act’) the 15 June 2022 plan ceased to be in effect because it was replaced by the new plan which commenced on 6 June 2023.
Under s 103(2) of the NDIS Act as a new plan for the applicant has come into effect under s 37 of that Act, the application before the Tribunal is taken to be an application for review of the new plan made on 6 June 2023, being the reviewable decision.
THE HEARING BEFORE THE TRIBUNAL
The hearing took place in person at the Tribunal in Melbourne on 10 and 11 April 2024.
The applicant was represented throughout the hearing by her parents. Mr Bird of counsel appeared for the respondent agency.
There was both oral and documentary evidence before the Tribunal.
The following witnesses gave oral evidence:
(a)The applicant’s father;[2]
(b)Ms Tivy, an Occupational Therapist;
(c)Ms Hegan, a Senior Clinician and Occupational Therapist;
(d)Ms Van Houston, an Occupational Therapist; and
(e)Dr Loveday, a General and Developmental Paediatrician from the Department of Neurodevelopment and Disability at the Royal Children’s Hospital.
[2] It should also be observed that the applicant's mother, who was present throughout the hearing of the application representing her daughter, made detailed submissions, and amongst other things, agreed in every particular with the evidence given by her husband. Given this fact, she elected not to give evidence on oath. No submission was made that an adverse inference ought to be drawn against the applicant by reason of her mother not giving sworn evidence. In any event, the Tribunal would not be prepared to draw such an inference given the explanation furnished and the submissions made by her jointly on behalf of the applicant together with her husband.
There was a significant amount of documentary evidence tendered before the Tribunal. It consisted of the following:
(a)An agreed Joint Tender Bundle;[3] and
(b)The “T” documents.[4]
[3] Exhibit "A". Hereinafter referred to as “the JTB”.
[4] Exhibit "B".
At the conclusion of the hearing, it was considered more appropriate for both parties to lodge written submissions. The applicant’s parents did make a brief closing oral submission which naturally has been taken into account by the Tribunal. Written submissions have now been lodged by all parties.
AN INITIAL OVERVIEW
The applicant is presently 16 years old having been born in September 2007. She is profoundly disabled. She suffers from the following conditions: [5]
[5] Precise details of the applicant's disabilities are contained in several expert reports in evidence before the Tribunal. Specifically, reference is made to the report of Dr Loveday, a General and Developmental Paediatrician of 11 April 2022, A1, and together with Dr Antolovich a Neurodevelopment & Disability Paediatrician also of 23 January 2023, A5.
Cerebral Palsy, GMFCS V, MACS V;
Lennox-Gastaut Syndrome, Epileptic Encephalopathy;
Intellectual Disability;
Cortical Visual Impairment (Cortically blind);
Dual Incontinence;
Neuromuscular Scoliosis;
Hip Dysplasia;
Drooling;
Gastrostomy in situ, on enteral nutrition at home;
Obstructive sleep apnoea;
Tonic clonic seizures;
Stridor;
Vomiting; and
Osteoporosis.
The applicant’s cerebral palsy has been described as quadriplegic cerebral palsy (meaning all four of her limbs are affected, she has no functional use of her limbs), complicated by both spasticity, dystonia, and functions at a GMFCS V - the most severe level of motor function impairment. Her epilepsy condition is described as complex. She is non-verbal and unable to communicate meaningfully in any way. It was also recorded in some of the expert material that the applicant’s bodily systems by reason of her disabilities are extremely weak.[6] The consequences of this fact are that she is highly susceptible to infections and other maladies requiring frequent admission, usually to the Royal Children’s Hospital. On several occasions she has almost died. Her condition is described as “extremely severe and fragile”.[7]
[6] Exhibit A10, 52.
[7] Ibid, 53.
She does attend the Glenroy Special School notionally for up to 5 days a week. On the days that she attends school she is picked up by the school bus at approximately 7:00 AM and taken to school in her wheelchair. She is returned home in the school bus at approximately 5:00 PM. However, it was explained that frequently she is unable to attend school due to a variety of illnesses or if, for instance, she has had a particularly bad night and not been able to sleep very well. In such cases she is not in a fit state to be able to attend school, and naturally, requires special care when she remains at home. These absences are, of course, quite unpredictable. In reality, by reason of these circumstances, more often than not, the applicant is only able to attend school approximately three days per week.
It is not in dispute between the parties that the applicant has a complex disability which requires very high care needs, which have been described as intensive and extensive, with such care necessary 24-hours per day. These complex needs pose challenges in terms of the care and assistance that she requires. The evidence was, which does not seem to be disputed, that she requires the assistance of 2 trained staff for all moving and handling. This includes changing her position in bed, moving to and from her bed, moving to and from her wheelchair and her seating, moving to and from a commode chair on and off the floor. It is also said that she requires 2 trained staff to attend to all her personal care needs.[8]
[8] The reports of the occupational therapists who gave evidence namely Ms Hegan, Ms Tivey and Ms Van Houston verify this fact. There was also a report of 8 November 2022 prepared by three professionals from "Very Special Kids" also to this effect. The joint authors of that letter were a Family Support Practitioner, a Physiotherapist and an Intake and Assessment Coordinator. A2,6.
The applicant’s conditions are lifelong and permanent.
The applicant, who was represented throughout the hearing before the Tribunal by her parents, attended on each day of the hearing. Her disabilities were readily apparent.
The applicant’s father gave evidence from the witness box and was also carefully, searchingly and sympathetically cross examined.
The evidence of the applicant’s father, not to mention the submissions made both by her mother and father, were compelling, very moving and in some respects confronting. The applicant’s father and mother are utterly devoted to her. They have at all times endeavoured to support and care for their daughter to the maximum possible extent. They contended, and the Tribunal agrees, that the burdens placed upon them are far beyond the responsibility of any parent. This was readily apparent to the Tribunal, from their own evidence, and that of several of the other witnesses who included several occupational therapists and the applicant’s treating paediatrician.
It is appropriate also to observe that in addition to the demands that caring for their daughter have placed upon them, the applicant’s mother suffers from Multiple Sclerosis (“MS”).[9] She is a participant in the National Disability Insurance Scheme (“NDIS”) and also apparently in receipt of a disability support pension by reason of that condition. Her husband in his evidence described that his wife uses a wheelchair from time to time as her MS, “is a condition that comes and goes. Sometimes you have a good day and sometimes a bad day. I am there to bolster her as well”. The applicant’s older brother suffers from Level 1 autism spectrum disorder, with elements of obsessive-compulsive disorder and attention deficit disorder and is also a NDIS participant.
[9] See also T1D and T1E which provide further details of the applicant's mother's MS condition are to be found in a letter of 10 February 2021 from her treating neurologist Dr Wesselingh and a further letter of 21 December 2021 from Dr Ganguly a specialist pain physician.
There is absolutely no doubt that the applicant’s parents consider the interests of their daughter to be paramount. It is not unreasonable to observe that it is readily apparent that the overall demands placed upon the applicant’s parents by reason of the matters outlined above have placed them under a significant level of stress and inevitably to some extent has taken a significant toll upon them.
ISSUES FOR DETERMINATION BY THE TRIBUNAL
The issues for determination by the Tribunal have not at all times been straightforward to identify.
The applicant’s parents lodged a Statement of Facts, Issues and Contentions on 16 May 2023 which identified several matters. In the section of that document entitled “Issues” the following matters were articulated:
(a)That the respondent was not willing to recognise the applicant’s parents as paid support workers as outlined in a report prepared by the occupational therapist Ms Hegan;
(b)It was difficult to find suitably qualified and trained support workers who could provide the level of care required for the applicant;
(c)The respondent was refusing to recognise the applicant's 24 hour care needs, with the level of care required being both 1:1 and 2:1 support level care, as per the report of Ms Hegan relied upon; and
(d)That the respondent had not recognised the family’s religious values in making the relevant decision.
Additionally, the applicant’s parents also lodged a document entitled “Responses to AAT Directions - 14 February 2023”. That document contained a breakdown of what was described as, amongst other things, “total cost of funding requested” together with a series of questions and answers concerning how the applicant’s parents would provide care for her and proposed arrangements concerning such care, including if they were to be paid as carers by way of reasonable and necessary supports under the NDIS.
On the other hand, the respondent in its Statement of Facts, Issues and Contentions and its “Closing Submissions” has formulated the issues for determination by the Tribunal in two slightly different ways.
In its Statement of Facts, Issues and Contentions, the respondent agency identified the two issues for determination by the Tribunal as follows:
(a)Whether the NDIS should pay the applicant’s parents to provide care to their daughter; and
(b)The nature and extent of paid care that the applicant requires.[10]
[10] Respondents Statement of Facts, Issues and Contentions, [5.1].
In its Closing Submissions the respondent identifies the two issues for determination by the Tribunal as:
(a)What level of care worker assistance constitutes reasonable and necessary support for the applicant; and
(b)Whether the NDIS should pay the parents to provide care to the applicant.
It seems that the most appropriate approach to adopt concerning issues is for the Tribunal to determine firstly, whether the NDIS should pay the applicant’s parents to provide for her care, and then secondly, determine the question of what level of care to be provided to her constitutes reasonable and necessary support as contemplated by the NDIS Act, applicable rules and operational guidelines.
THE EVIDENCE
The applicant’s father
Initially, in his evidence, the applicant’s father adopted as true and correct, a joint statement that was read by his wife to the Tribunal in opening. That opening raised several matters. They stated that they were requesting to become paid and recognised support workers for their daughter along with her high intensity support workers who are paid. It was emphasised that, amongst other things due to the demands of the applicant’s care over the past 16 years they have struggled to obtain consistent work outside the home. Additionally, one of their sons is also disabled and requires considerable extra attention. As the applicant has gotten older, which was confirmed by the expert evidence of several Occupational Therapists, the time and energy required for the applicant’s daily care has increased.
It was therefore submitted that the burdens placed on the applicant’s parents are far beyond what might be described, or would be deemed, as parental responsibility and now encompasses a role as full-time carers. These burdens are in addition to the fact that the applicant’s mother has her own medical condition, namely MS.
The applicant’s parents contended that they were not seeking to become her sole full-time carers or support workers, but only seeking acknowledgement of the functions they discharge as support care workers alongside the applicant’s high intensity care team.
It was pointed out that a lack of proper carers will always pose a high risk to the applicant’s health and well-being. When there is a change of carers who are not familiar with the applicant and her complex needs, the level of care she experiences can drop significantly. This is particularly the case if the applicant’s parents are not effectively working in conjunction with the applicant’s team of high intensity support workers who are able to manage those complex needs.
Therefore, he stated and contended that appropriate and adequate funding is needed desperately for the applicant who requires 24-hour care.
Several matters were touched on in cross examination of the applicant’s father. He was probed about his knowledge of an organisation that provides disability support workers and carers for participants in the NDIS, such as the applicant. He readily conceded that it is possible to obtain paid assistance from that organisation known as “Drake Medox”. When pressed he conceded that for a majority of the time that organisation could provide support workers able to care for the applicant.
Reference was then made to a letter sent by the applicant’s parents to the Chief Executive Officer of the respondent agency.[11] A sentence in that letter stated that they wanted to be paid as support workers, for the applicant because it would provide “financial stability” to their family by drawing a wage through funding provided to the applicant under the NDIS. He stated that was correct. His evidence then shifted when he denied that the main reason for seeking the funding was as described.
[11] T1A, 11-12.
A further passage from the same letter was put to him in which it was contended as a family they were doing the best they could for the applicant in an exceptional situation whilst trying to stay together as a unit and maintain a lifestyle financially. He stated that such words could be misconstrued.
In terms of what the applicant’s parents are seeking there was a document in evidence dated 14 February 2023 headed “Responses to AAT Directions”. The contents of that document are referred to in their entirety. In the first paragraph there is a breakdown showing “Weekly parental remuneration” in which a total is identified of is $6,245.30.[12] This was probed in cross examination of the applicant’s father. When it was suggested to him that it was a weekly funding sum claimed, he responded that that was not necessarily so. He reiterated that there had been a lot of misconceptions with the amount that they were actually seeking. However, despite reasonably careful probing he did not identify specifically what sum they were seeking. Further, he stated that it was incorrect and then specifically for the avoidance of any doubt disavowed any claim for weekly funding of the sum of is $6,245.00.
[12] As Ms Van Houston pointed out in paragraph 6 of her report this weekly some equates to an annual amount of $324,755.60. The applicant's parents, both in evidence from her father, and in submissions stated that they were not seeking an amount equal to this sum.
Finally, evidence shifted somewhat again to the point where he agreed with the proposition that they wanted to be paid some amount, but not $6,000.00 a week. They were seeking some amount in addition to having formal paid support workers assist them. Unfortunately, a precise sum, with a breakdown of how it was calculated or made up, and the grounds relied upon for seeking such sum, was not submitted to the Tribunal. This makes the Tribunal’s task, very difficult, if not impossible. It should be recorded that after an explanation was provided by the Tribunal to the applicant’s parents concerning the need for them to properly quantify or explain exactly what they were seeking in writing, a direction was made for further submissions to be lodged by them within 14 days.[13] Therefore, it is regrettable that an accurate written submission was not forthcoming from the applicant’s parents explaining precisely how much was being sought by them, and the grounds relied upon in doing so.
[13] There was an exchange between counsel for the respondent, the applicant's parents and the Tribunal concerning the need to state precisely what was being sought from pages 117 to 123 of the transcript.
Further evidence was given by him about the applicant’s seizure detection dog along the lines of that already recounted and given by other witnesses. There was also evidence from him about the type of and the number of seizures that the applicant experiences on most days. This fact has also been addressed in these reasons in several other places and need not be repeated. Similar evidence was also provided by the applicant’s father concerning her attendance at the Glenroy Specialist School which need not be repeated. Once again, it was in a similar form to that which has been articulated earlier and was also given by other expert witnesses.
Certain parts of Ms Van Houston’s report were canvassed in cross-examination of the applicant’s father. He acknowledged the comments in her report that she was prepared to commence an assessment at 4:30 AM, which he agreed, as was observed by Ms Van Houston, was the start of the applicant’s day. However, her parents declined this offer. When asked why in cross-examination he stated that they did so because they had already supplied to the NDIA reports by other Occupational Therapists and felt that a third one was in effect working backwards. They did however agree to an assessment by Ms Van Houston which did take place. He overall agreed with the observations made by Ms Van Houston in paragraph 26 of her report concerning the applicant’s “Medical history, diagnosis, symptoms and treatment”.
With respect to the applicant sleeping overnight her father, in cross-examination, stated that a camera and microphone were in place to alert her parents if she suffered a seizure at night. Additionally, he explained that they generally learnt to “sleep with one eye open”. He agreed that the agency’s proposal for an overnight carer to be present, in addition to the presence of the seizure detecting dog, was a reasonable support for the applicant. He further conceded that the provision of such support would adequately meet her care needs during the night. However, he reiterated, as he and his wife had done consistently throughout the hearing of the application, that they were also concerned about the quality of any carer who might be retained and paid for by the respondent agency.
The applicant’s father was referred to the paragraphs of Ms Van Houston’s report headed “Daily care routine” and agreed with the details recorded in that section. In that setting he also agreed that there were 2 hours in the morning and in the evening where the applicant required 2:1 support. The reason for this support at such ratios during those times included the need to use the hoist to effect transfers, changing her and carrying out like tasks. It was put at this point of the cross-examination of the applicant’s father that Ms Hegan in her reports had suggested that 1.5 hours were needed in the morning and the evening, however, he responded that he would say that it was more like 2 hours that was required. This fact does not seem controversial.
It was put to the applicant’s father that he was paid a Centrelink carer’s pension. He stated that he had been but when the applicant turned 16 the benefit was terminated. There was no documentation produced to the Tribunal verifying the termination of this benefit or entitlement. This was notwithstanding that he was invited by both the Tribunal and counsel for the respondent agency to provide such documentation by way of corroboration of this evidence.
The applicant’s weekend routine was briefly touched on in cross-examination. Her father stated the morning, and the evening routine was the same and required support workers for 2 hours at a ratio of 2:1. As for activities undertaken with her, this varied, subject to some degree to the weather, but included going to watch a film, a concert, socialising or going out to see horses or engaging in other activities such as a visit to the zoo. They are family occasions. They can be demanding when they travel in a car as his wife also has a wheelchair which she sometimes needs as well. Her MS was again touched on, where he agreed that the neurologic system gradually worsens, and the level of disability accumulates. He also admitted that his wife experiences chronic fatigue.
Specific reference was also made in cross-examination to a sentence from Ms Van Houston’s report where she stated that she understood the applicant’s parents believed that they were already taking on the role of both informal and formal carer, but not being compensated for such a role. When suggested to the applicant’s father that it was an accurate description of his position, he readily conceded it was. Then it was suggested to him that if the respondent agency funded external paid carers or support workers, that would be a preferable outcome, he gave a qualified response. Whilst acknowledging it would be of some help, he was reluctant to concede that it would necessarily be better. He put it another way in that both he and his wife had been unable to seek employment, and because the applicant is approaching the end of her schooling, caring for her would become even more difficult for them. The reason for this is that as she grows older and physically increases in size, there will be greater demands required on her parents, and carers for her proper care. Therefore, certainly they needed support, which would help but their daughter needs 24-hour care.
Once again, it was put to the applicant’s father that if there were paid supports by external providers that would assist him and his family. His response consistently was to the effect that given his experience from history, on paper it might look appropriate, but in reality, it does not work out like that. Therefore, at the end of the day he and his wife end up being left to provide all, or perhaps more accurately a significant portion, of the care that the applicant requires. He further gave by way of an example of such demands the situation that arises from time to time where external support workers may be in place, but there may be a cancellation, they may not turn up or some other event occurs (and they have found that repeatedly) so “at the end of the day we are the ones who end up picking up the pieces”.
The applicant’s father was then taken to the proposal from the respondent agency which does contain a proposal to vary the applicant’s existing plan to provide additional funding for support workers.[14] He agreed that it was a substantial assistance package and that there had been some movement by the respondent agency. Further, he agreed with a question put to him that there was not much more that the agency could reasonably do than offer the intensive supports contained in that proposal. His response was that they understood that.
[14] See especially, details of the proposed additional funding is to be found at paragraph 6.16 of the respondent’s Statement of Facts, Issues and Contentions lodged with the Tribunal in this application.
Ms Tivey
Ms Tivey, an experienced Occupational Therapist, who has known the applicant and her family professionally for in excess of seven years, prepared an “Occupational Therapy Functional Assessment Report” dated 9 October 2023 comprising 30 pages together with eight annexures.[15] From the witness box she confirmed that its contents were true and correct in every particular. In the report she explained that she had been retained by the applicant’s parents. The purpose of the occupational therapy assessment undertaken was expressed by her to be to clearly explain the applicant’s functional capabilities and to address several concerns raised by the NDIA concerning this application and what was described as an ongoing request for a review of the applicant’s support hours.
[15] JTB, A10.
At the outset the Tribunal should observe that it found Ms Tivey, notwithstanding the lengthy time that she has known the applicant and her parents, to be a professional and impartial witness who genuinely saw her obligations to assist the Tribunal in this application and give her evidence with respect to the facts as she saw them. She also, when expressing a professional opinion did so genuinely from her extensive knowledge and considerable experience. A further impressive quality of her evidence was that in cross-examination on several occasions she made appropriate and important concessions. They are the hallmarks of a good witness.
The contents of Ms Tivey’s report of 9 October 2023 are referred to in their entirety. They need not be reproduced in any great detail for the purposes of these reasons. However, a summary of several parts of the report which are particularly relevant to the subject matter of this application will be referred to.
Part 4 “General Background” of Ms Tivey’s report outlines the applicant’s diagnoses and medical conditions together with other relevant medical history, the functional impact of the disability diagnoses on the applicant, her life transition together with her formal and informal support arrangements.
In Part 4 of her report there is a section addressing the topic of, “Current Housing & Living Arrangements”, which did occupy some considerable attention when she gave her evidence from the witness box during cross-examination. After outlining the disabilities suffered by the applicant’s mother and brother, Ms Tivey explained that this level of disability in a single household is a highly unique situation and places significant physical, emotional and financial strain on the family. She observed that the applicant’s parents are constantly putting the needs of the applicant above their own, and for that matter of their other children. Ms Tivey even went so far as to say that not doing so would potentially place the applicant’s life at risk. She stated that the applicant’s ongoing care has had a gruelling impact on her mother’s health. Notwithstanding this impact, Ms Tivey considered that due to a lack of sufficient support in the form of external support workers, and that she is a committed mother, she continues to do her best as she has no other choice despite the impact that it has on her health.
Ms Tivey also expressed the opinion that it is imperative in formulating a plan under the NDIS for the applicant, that the decision-maker appreciates that her mother has a significant and progressive disability, her elder brother has additional and very differing needs, that also need to be met, and that her younger brother is frequently left behind in what she described as a busy and complex household. Significantly, Ms Tivey also recorded in that section of her report that the applicant’s parents expressed to her that they felt due to their daughter’s high care needs and demands placed on their time, they are unable to fulfil their duties as parents to their two other children.
Several things emerged from the cross-examination of Ms Tivey with respect to the section of her report concerning “Current Housing & Living Arrangements”. In response to one question, she stated that the demands of caring for the applicant were having an impact on her mother’s disability, namely MS. The Tribunal considers this was an important and understandable concession. Similarly, when it was put to her that the applicant’s mother suffers from chronic fatigue, she readily acknowledged that to be the case.
She also stated in response to another question that her clinical preference would be for the family to have paid supports and considered that to be their desire. However, she to some extent, relying upon what clearly the applicant’s parents had explained to her, qualified that opinion by saying that the applicant’s parents want to be paid when all else fails. So that if for instance one of the applicant’s disability support workers called in sick, requiring her parents to fill the gap, they would be assisted presumably in a financial sense.
Ms Tivey stated that the applicant’s parents desire was for her to have a team of disability support workers that they could rely upon, have confidence in, and get to know. Historically, she said they have had a lot of trouble creating those relationships. She emphasised that her parents have struggled to get the level of regular care that the applicant requires in the past. She described it as a highly unique situation.
Several questions in cross-examination directed to Ms Tivey related to the applicant’s inability to attend school on relatively short notice, as has been articulated earlier. It was put to her that on the assumption that if funding was included for carer support for those days per week when the applicant was not at school, such funding would respond to her demands. Ms Tivey responded that in theory it should work. However, she expressed the concern that she did not know how logistically one could make that work. She expressed the opinion that it could be very difficult to get a high intensity carer to show up on the spot. She repeated the concern that she was not certain how fast an agency could arrange for a higher support care worker to attend the applicant’s home as soon as possible. It was suggested to her that a well-resourced agency should be able to do that. Ms Tivey stated that she did not know, especially if the agency did not know in advance what days of the week this would occur.
In part 6 “Functional Domains” of her report Ms Tivey addresses a variety of topics including, “Mobility & Motor Skills”, “Transfers”, “Communication”, “Cognition”, “Self-Care” and Self-Management”. Some attention was directed in cross-examination to a subsection entitled “Sleep/Overnight Assistance”, of the “Self-Care” portion of part 6 of her report. In that section she recorded that the applicant requires active overnight assistance each night. The time required during a night will depend on the applicant’s health and seizure activity. The evidence from several sources before the Tribunal, both expert and lay, was that the applicant usually experiences between 4 and 5 seizures a night. Additionally, as already noted, she suffers from Obstructive Sleep Apnoea resulting in Stridor, being respiratory impairment due to reduced airflow.
Ms Tivey explained that support workers attending to the applicant’s needs must be trained and have the level of experience to recognise when a seizure was occurring, escalating and requires the administration of appropriate medication and any necessary additional further management. She also noted that the applicant has a seizure alert dog sleeping on her bed of an evening. However, if the dog is sleeping, he frequently will not be aware of a seizure occurring. If a seizure occurs and the dog is not alerted, such seizures can pose a serious risk to the applicant’s life during the night.
In cross-examination Ms Tivey expanded on this aspect of her report in explaining the nature of different types of seizures experienced by the applicant. She stated that there are some seizures where the applicant will violently shake and foam at the mouth. It is those seizures that the applicant’s seizure detection dog is trained to detect. A second type of seizure experienced by the applicant she explained are known as “absence seizures”. These seizures, particularly of a night-time, are harder to detect. The manifestations of such seizures include eyes rolling in the back of the head and no visible movement. Also, there is not usually a noise associated with them. When these types of seizures occur, the patient will not always wake up. This is, she said, where measures such as the installation of a camera and a microphone in her bedroom, or the presence of a seizure detection dog, will fall down.
Ms Tivey further observed in that subsection that if the applicant has no access to overnight support staff her parents provide all her overnight care. Ideally, therefore the applicant requires full active overnight support at a 1:1 ratio to monitor her for absence seizures. This includes listening for gasping breaths, changes in respiration and changes in pallor. In her opinion it is simply not safe for the applicant to be left alone or unmonitored in her room.
In cross-examination, it was conceded by Ms Tivey that the applicant’s parents had set up a camera and microphone so they could hear if a seizure was happening. Apparently, it is similar to baby cameras that are frequently used with young infants. She also repeated that there was the seizure detection dog.
Another reference by Ms Tivey in her report concerning the topic of “Sleep/Overnight Assistance” with respect to the applicant warrants mention. She noted that unfortunately, the applicant’s current NDIS plan does not provide sufficient funds to support overnight carers coming into the home. In the past her parents have alternated with one of them staying awake all night to monitor the applicant. Ms Tivey considered however that this arrangement is not sustainable or in any way reasonably considered a standard parental duty for a 16-year-old. Due to severe burnout and the simple need for sleep, the applicant’s parents are unable to provide this level of direct 1:1 and at times 2:1 care overnight every night, despite there being a clear need for such care to be provided. Ms Tivey concluded that by reason of this fact it does place the applicant’s life at risk as she may have an uncontrolled seizure, which would suppress her respiration, that her seizure detection dog would not alert her parents too. She concluded, that because of this there is a potential risk of death for the applicant.
Further in cross-examination with respect to the topic of “Sleep/Overnight Assistance” referred to in her report, she repeated that not having access to overnight support staff is clearly a problem both obviously for the applicant and her parents. Once again, to her credit she expressed the opinion that she did not think it was sustainable for the applicant’s parents to be her carers overnight. It was put to her that the respondent agency is prepared to fund an overnight support worker, which she agreed she was aware of, and believed was appropriate. She also conceded that such paid supports would in her view assist the family and increase their independence.
Part 7 of Ms Tivey’s report entitled “Typical Daily Schedule” should also be referred to. It was the subject of some considerable attention when she was cross-examined. This section of her report was divided into two parts namely, “Monday-Friday - When attending school” and, “Weekend/Non-Attendance school days”. The contents of both of those parts are referred to in their entirety. Reference should be made to several parts of them.
In the section describing the applicant’s typical daily schedule on Monday-Friday-When Attending school, the first block of time identified is from 4:30 AM to 6:30 AM. A description of the various tasks that must be undertaken by her carers is described in that section. Ms Tivey explains that these tasks require a 2:1 ratio due to the hoisting and complex care needs of the applicant first thing in the morning. The tasks required of a carer for the block of time from 6:30 AM to 7:30 AM was considered and it was stated by her that it is appropriate that these tasks can be completed at a 1:1 ratio.
Between 7:30 AM to 5.00 PM, as noted earlier, the applicant is at school. Ms Tivey observed that on days when the applicant is unwell, her parents must be available to provide 2:1 care required by the applicant. The effect of this necessity, or perhaps more accurately described as requirement, prevents the applicant’s parents from maintaining any successful ongoing employment.
The period between 5:30 PM to 7.00 PM was in the opinion of Ms Tivey, as expressed both in her report, and in the witness box during cross-examination, a time during which the applicant requires a 2:1 support ratio from her carers. This is because as she explained, due to the hoisting and complex care needs that the applicant has. When probed on this topic in cross-examination Ms Tivey stated that one of the carers has to be an intensive support worker. Further, in her opinion, the second support worker, due to the applicant’s special needs, should have a higher level of knowledge and skills. She explained the role of the second support worker as including, observation, guidance, verbal reassurance, monitoring of the applicant’s airwaves and for seizures, so that if something happens the applicant can be attended to with the utmost level of safety. In this setting Ms Tivey explained that two very high-level support workers are also needed because the applicant has a fixated spine, no head control, is prone to broken bones and her body is very fragile.
Importantly, Ms Tivey both in her report and whilst in the witness box, stated that the typical carer hours provided by the applicant’s parents (with intermittent support worker assistance) on a school day was 3.5 hours of care daily at a 2:1 ratio. The care and assistance that they provide to the applicant on a school day can occur multiple times throughout that day. Therefore, 7 hours of funding, she contended, is required daily, on a Monday to Friday for coverage at a ratio of 2:1 care, making a total of 35 hours of support weekly.
The applicant’s daily schedule as described in the second part entitled “Weekend/Non-Attendance school days”, is referred to in its entirety. Ms Tivey gave an example of carer hours provided by the applicant’s parents on a typical weekend or “non-school day”. Usually, she stated they provide 7.5 hours of care daily at a 2:1 ratio. This, therefore, equals 15 hours of funding required daily on a Saturday and Sunday, 30 hours per weekend, to support the required care ratio. In cross-examination it was put to Ms Tivey that the respondent agency has proposed to fund 4 hours for an additional support worker together with 9 hours for a high intensity support worker. She stated that she was unaware of this fact, and further, agreed that such funding was fair and reasonable.
Finally, with respect to Ms Tivey’s evidence Part 8 of her report “Address of Previous NDIS Correspondence” should be referred to. She mentioned correspondence from a NDIS planner to the applicant’s parents of 17 April 2023 which declined the request for funding by the applicant’s parents for their informal support. Ms Tivey recorded that they wish to utilise paid support workers whenever possible, however, historically they have been unable to find a company that can service the applicant’s high intensity support needs at the hours her daily routine requires. She noted also that a company that provides support workers “Drake Medox” had indicated that they would be able to meet the applicant’s complex needs. However, currently sufficient funds are lacking. This observation by Ms Tivey is consistent with the evidence of the applicant’s father from the witness box and the submissions made on her behalf by her parents during the hearing of the application.
Ms Tivey repeated these observations in the witness box when cross-examined. She also emphasised that she believed that the applicant’s parents would like to use a company like Drake Medox but that there had not been sufficient funds in the plan before to enable the retainer of a firm such as that to provide support workers or carers. She also stated that there are other companies like Drake Medox but off the top of her head she could not recall their names. Additionally, she emphasised that she was not aware that every such company is able to provide disability support staff that are able to provide high level and complex support such as that required by the applicant.
Ms Hegan
Ms Hegan is a Senior Clinician and Occupational Therapist and has been so for well in excess of 20 years. Her extensive experience and certainly expertise concerns complex disabilities. Amongst other things, her evidence was that she has given several papers or presentations at various conferences of healthcare professionals practising in the areas of disability such as those experienced by the applicant. She has presented at the International Cerebral Palsy Conference alongside the applicant’s treating orthopaedic surgeon. Another presentation made by her was at the Occupational Therapy Conference with respect to wheelchair prescriptions for patients with spasticity quadriplegia. There is no doubt that she is highly qualified and experienced in this field.
Ms Hegan was probed in cross-examination about whether she would describe herself as an advocate for the applicant’s parents with respect to this matter. Ms Hegan ensured to emphasise that such support was necessary for helping them in navigating, what she described as a complicated system, whose challenges brought much uncertainty to the applicant and her parents in seeking appropriate and permissible funding under the NDIS scheme. In response to another question which alluded to the issue of whether or not she was an advocate for the applicant and/or her parents, particularly for the parents to be paid as care workers, she responded that she was not there to decide either way. She emphasised that her expertise was in occupational therapy not about financial matters involving the NDIS.
Some comments should be made about the question of whether Ms Hegan was really an advocate for the applicant and/or her parents, as alluded to somewhat in cross-examination. It goes without saying that Ms Hegan has worked with the applicant and her family for many years. She presented to the Tribunal as a dedicated professional who is genuinely concerned for the welfare of both the applicant and her parents. The demands placed on the applicant’s parents over many years were clearly not lost on Ms Hegan.
The Tribunal did not view her as an advocate, but rather a genuinely concerned professional dealing with a profoundly disabled participant in the NDIS whom she wishes to see achieve the most beneficial outcomes. This is perfectly understandable. On occasions in her evidence, she was somewhat argumentative, but not in a way that detracted from the substance of her evidence. That she was somewhat argumentative needs to be viewed with a degree of realism in that she stated that this was the first time that she had given evidence as an expert witness and that the process was new to her. She emphasised that she saw her role to provide the Occupational Therapy evidence. At the end of the day, the Tribunal concludes that this is what she did.
She had prepared several reports that were in evidence before the Tribunal at the hearing of the application as follows:
(a)An untitled report of 19 August 2022 (updated on 6 December 2022) which described the goals of the applicant and the necessary supports required to meet such goals;
(b)An undated report consisting of 3 pages described as “Supplement to OT Report”;[16]
(c)A Functional Capacity Assessment of 28 April 2022 – 1 June 2023;[17]
(d)An updated report served on 6 November 2023 which responded and provided further information to itemised statements from a Crosslinks Rehabilitation report;[18]
(e)A report with further information to the report at (a) that was similarly completed on 19 August 2022, updated 6 December 2022”;
(f)A Functional Capacity Assessment of 28 April 2022 to 1 June 2023; and
(g)An undated report clearly prepared by way of response to the report of Ms Van Houston.
[16] JTB, A4.
[17] JTB A8.
[18] JTB A11.
The contents of all of Ms Hegan’s reports are referred to in their entirety. They have been read and considered by the Tribunal.
Most of Ms Hegan’s reports followed a similar format which included several relevant subject headings such as, “Current NDIS Plan Goals”, “Support is required to meet these goals”, “Risks”, “Other essential tasks that family provide without any expectation of funded support”, “Issues accessing carers”, “Risk to current care situation” and “Justification for goals and supports required.” With respect to the last subject heading, Ms Hegan has considered the applicable criteria for determining whether these supports sought should be funded by the NDIS.
Each of her reports, in considerable detail, articulate the applicant’s specific disabilities. They need not be reproduced for the purposes of these reasons, as they were not subject to any dispute between the parties and they have been, already articulated in some detail in other parts.
One report prepared by Ms Hegan referred to as (c) above recorded that she had completed a “36-item World Health Organisation Disability Assessment Schedule” (‘WHODAS’).[19] This assessment scale was as she explained, used to establish the applicant’s overall level of disability compared to the population norm and to identify the domains in which the applicant experiences the most difficulty. The results of the WHODAS assessment were produced in a table contained in that report. Whilst the contents of such a table speak for themselves, the Tribunal considers it important to note that the applicant’s level of disability with respect to each domain identified therein, and for which tests were administered, were recorded as being in the “Extreme” category. In several notes accompanying each of the domains identified, the applicant was recorded as being, amongst other things, “fully dependent” and having a “non-verbal, response to noise”.
[19] JTB A8.
There should also be reference made to another test administered by Ms Hegan. That test is known as “CANS”, being an abbreviation for the term “Care Needs Scale”. The results of that test administered to the applicant were found by Ms Hegan to be a “Level 7”.[20] This result means that the applicant “Cannot be left alone-needs support 24-hours per day”.[21] Whilst it is reasonably obvious why the applicant’s care needs would be categorised as level 7, it should be repeated that Ms Hegan based this upon the fact that the applicant requires PEG feeding, bed mobility support, has difficulty communicating, requires support with eating, drinking and transfers.
[20] Ibid 34.
[21] Ibid.
Several observations and opinions were expressed by Ms Hegan in her reports. Some of those key observations and opinions will be briefly recounted for the purposes of these reasons. In considerable detail, in tabular form, she has carefully identified the relevant blocks of time, the tasks to be performed, provided a description of those tasks, specified the care ratio required to undertake such tasks, the minimum requirements, the days per week and the total number of minutes per week in discharging those functions.
With respect to the topic of the applicant’s risks she described that in particular she is at risk of seizures during all tasks that must be undertaken. She considers that two carers are required for changing, showering, dressing, hoisting from commode to bed, and positioning her in the wheelchair. Ms Hegan expressed the opinion that a 2:1 support ratio with no support from the applicant’s parents would only be possible through extensive training and the recruitment of experienced carers.
Further emphasis was placed by Ms Hegan on seizure monitoring and care response at all times. This included the need for appropriate monitoring and recognition of the types of seizures experienced by the applicant and requires an appropriate plan with adequate training. These skills are essential for any carer, she opined, who would be recruited to assist the applicant. Similar observations were made with respect to PEG feed training as the PEG often detaches when in a standing frame. Also, with respect to this question she observed that although the applicant is PEG fed, she continues to be at risk of aspirating which can result in chest infections and shortened life expectancy.
The applicant’s therapy dog was also addressed by Ms Hegan in her reports. She considered that all support workers recruited to assist the applicant need to be trained dog handlers given the important role that the therapy dog plays, particularly with respect to detecting and alerting all present, including the applicant’s family, when she experiences a seizure.
It is fair to say that in most of Ms Hegan’s reports she emphasised the need for carers and support workers attending to the applicant be properly trained to address adequately all of the applicant’s needs, which are clearly complex. In this setting, she also opined that the applicant’s parents, given the unique knowledge of her disabilities and needs, should complete appropriate carer training for all new staff retained to care for her. She considered on that point that the applicant’s parents, in her opinion, probably had more expertise than trainers or carers, because they have probably seen more seizures, as they deal with seizures every single day of their lives. This does seem a perfectly understandable conclusion.
Several comments in Ms Hegan’s reports were directed to the care given by the applicant’s parents to her. She expressed the opinion that her parents are experts in her care and have provided a safe and supportive environment for many years. They are clearly, in her opinion well attuned to recognising the different seizures experienced by the applicant, and the risks posed by each type of such seizure. Additionally, their finely tuned capacity to interpret their daughter’s actions include the ability to recognise her limited communications, recognise pain cues and are experts in engaging with her socially, insofar as one is able to do so. Once again, this is perfectly understandable.
In one particular report Ms Hegan went so far as to express her opinion that the applicant’s parents potentially have more expertise than the carers or trainers engaged.[22] This was briefly explored in cross-examination. It was suggested to her however that she would expect a large organisation such as “Drake Maddox”, which provides specialist disability carers, would provide carers who would be trained in how to deal with seizures. She stated that she had not had any dealings with this company previously. She was not certain whether every carer provided would have such skills as she simply did not know.
[22] T1B,15 (fourth dot point).
On this note, with respect to the care given by the applicant’s parents to her, Ms Hegan did in some of her reports express what she described as a risk of carer breakdown, or as it was also referred to at various stages of the evidence as “carer burnout”, with the present situation concerning the applicant’s parents. She recorded that the applicant’s mother is able to provide the necessary and frequent supervision required when the applicant is unable to attend school. The applicant’s father she considered could not sustain both work, in whatever form that may be, and address all the requirements or needs of his daughter, particularly when emergency care may be required. Similarly, she considered that it was not reasonable for the applicant’s mother to provide all day care for her, which is understandable.
In cross examination, Ms Hegan was probed about her observations concerning a risk of carer breakdown in the current living situation. She readily conceded in response to a question that she understood that one of the really important features of the respondent’s proposal to support the applicant’s family was to provide an overnight carer. She also conceded that it was a reasonable and necessary support. The provision of paid carers would definitely, in her opinion, minimise the burden that the applicant’s parents were currently experiencing. In this setting, she also readily acknowledged that the applicant’s mother, as has been noted earlier in these reasons, has her own medical challenges. Therefore, provision of these supports, as proposed by the agency, would be appropriate in assisting to address those challenges.
It was further suggested to Ms Hegan in cross-examination that it would be preferable for professional paid support workers to be caring for the applicant rather than her mother who has challenges of her own, including MS and chronic fatigue. She stated that in terms of whether it was preferable she considered that the applicant’s mother was probably more in tune with her needs then a support worker coming in from outside. However, when pressed about the applicant’s mother’s own needs and health, she stated that she did not dispute that her mother needs adequate rest and clearly the applicant needs adequate support workers at all times. This does not seem controversial.
Reference should be made to a passage from one of Ms Hegan’s reports in the T documents concerning the number of hours per day that carers should be provided for the applicant on those days when she attends school.[23] She concluded that the applicant required carers on a ratio of 2:1 for a minimum of 3.5 hours per day and a ratio of 1:1 for the remaining 21.5 hours per day. It was put to her that the respondent agency is willing to fund two hours in the morning at a ratio of 2:1 and two hours in the afternoon at a ratio also of 2:1 on the days that the applicant attends school. She responded that when the report concerned was prepared the agency was not agreeing to that level of funding. It was readily conceded by her that the level of funding now proposed by the agency of two windows of two hours each in the morning and the afternoon when the applicant attends school was more than adequate.
[23] Ibid, 16 (second dot point under the heading "Risk to current care situation".
Another aspect of funding that was touched on during Ms Hegan’s cross-examination concerned the agency’s proposal to fund 9 hours of support on each weekday for a high intensity support worker to provide support and assistance to the applicant’s family when she is not attending school. She readily conceded that such funding was in addition to the 4 hours previously touched on. She also agreed that such additional funding was a reasonable and necessary support to assist the applicant’s family provided that she did not need to be transferred during those 9 hours because it is a Work Safe requirement that two support workers are needed to effect such a transfer.
Dr Loveday
Dr Loveday is a General and Developmental Paediatrician from the Department of Neurodevelopment and Disability at the Royal Children’s Hospital. She has been a paediatrician for more than 20 years. Her experience over those 20 years has been with many young people of various ages with severe disabilities, and in particular severe cerebral palsy such as that suffered by the applicant. In evidence from her was a brief report of 11 April 2022.[24]
[24] JTB, A1.
Her report outlined the various conditions from which the applicant suffers which have already been outlined in some detail earlier in these reasons. She reiterated these conditions when in the witness box.
In the section of Dr Loveday’s report headed “Access to support workers” she emphasised that this is critical need for the applicant. It was repeated that the applicant has an epileptic encephalopathy and experiences 3 to 5 seizures a day. Accordingly, the applicant is on multiple antiepileptic medications. It was stressed that she needs care for every aspect of her life. She stated that it is critical to note that the applicant needs carers who are able to manage her degree of complexity. In this context she expressed the opinion that it would be beneficial for the applicant’s parents to be recognised as her carers because she has such a high level of care needs. It was also noted by Dr Loveday that the applicant’s mother has MS, as noted earlier. This complexity, she stated, adds to the burden of care for the applicant’s parents.
When in the witness box Dr Loveday largely reiterated, in more detail, what was encapsulated in her report. It is appropriate to briefly recount the substance of that evidence given by her from the witness box. She emphasised that the applicant requires carers day and night to look after her. It was reiterated that the applicant suffers from severe epilepsy which means she could have a seizure at any time which could put her at significant risk of real illness and/or death. In this context, she emphasised that highly trained carers must be looking after the applicant both day and night.
Dr Loveday also stated from the witness box that when the applicant did get out into the community, which the evidence was she does from time to time particularly on weekends such as with trips to the zoo, she would always need at least two people (or carers) with her. The reasons for this were that to transfer her from her motorised wheelchair while in the community, or to be able to mobilise her, more than one carer is required. This is particularly so because she is an older person and there are greater physical demands that require more support.
Another feature of the applicant’s care that was emphasised by Dr Loveday concerned the difficulty she experiences with swallowing. A carer must be present at all times when she is swallowing to ensure that she doesn’t aspirate her feeds or her saliva. If this were to occur, it could get into her lungs making her very sick with the potential of her dying from a chest related disease. This requires carers to be very aware when the applicant is eating, how she is swallowing and being able to adopt preventative measures or remedies when required in the event of difficulty.
In response to another question asked of her, concerning the level of high intensity support worker required for the applicant, Dr Loveday stated that she did not think it would be appropriate to have untrained people who did not know the applicant, as it would put her at some risk. In other words, she considered that it was necessary for potential support workers to have some training, handover and introduction or induction about the applicant’s very specific and complex needs.
In this context Dr Loveday also expressed the belief that the applicant’s parents had exceptional skills in looking after her. She described them as well trained and believed they should be recognised as carers.
It was also stated by Dr Loveday that universally, and her experience across all families that she has looked after, that they find it really hard to retain suitable carers who can appropriately discharge all that is required to properly care for children with severe disabilities such as those experienced by the applicant. She emphasised that the search for carers becomes more difficult as the child gets older because more carers are required. By way of example, with a child under five the physical demands of such tasks as lifting are not so difficult, and only one carer at a time is required.
However, when people get older and have cerebral palsy, they develop much more significant care needs. This makes it harder for families of the patient because not only do they have to find carers, but they have to locate two carers at any time to provide the appropriate level of care required by the patient. Dr Loveday emphasised that these carers need to be really well trained to appropriately manage all the different demands and needs that providing care for such a patient necessitates.
Dr Loveday gave several examples of the varying tasks that carers of the applicant are required to undertake. It clearly involves some level of training, experience and expertise. They include how to use a gastrostomy, correctly feed and use a hoist together with different equipment.
In cross examination Dr Loveday, in response to several questions, emphasised that her overriding concern was to see that the applicant had the appropriate level of care. In this context she, on several occasions in response to questions put to her, reiterated that she considered the applicant’s parents have always had her best interests at heart. Additionally, she stated that the applicant’s parents have always provided very good care for her. She wanted the applicant’s parents to be recognised as her carers and that they be paid. Dr Loveday stated that it is not uncommon for people in the position of the applicant’s parents being unable to find appropriate carers and having to fulfil that task themselves by reason of which they are financially penalised. Sometimes, therefore she does advocate for parents to be recognised as paid carers so that they would not be financially penalised in that sense.
Importantly, on several occasions in cross-examination Dr Loveday properly conceded that adequate and appropriate care for the applicant did not necessarily have to be provided by her parents if external professional support workers could be arranged. Such support could be provided by an organisation such as Drake Mdox. Although, she did not know of that company and its ability to provide appropriate carers.
Ms Van Houston
Ms Van Houston is an experienced occupational therapist. She prepared a report, comprising 43 pages (together with several annexures), concerning the applicant, entitled “Occupational Therapy Assessment and Evaluation” after she had been provided with a detailed letter of instruction on behalf of the respondent agency by its solicitors. She was furnished in the letter of instruction with an array of documents including the T documents filed in this application and 4 reports prepared by Ms Hagen.
In the witness box Ms Van Houston adopted the contents of her report as true and correct.
In the witness box, the Tribunal observed Ms Van Houston to also be an impressive, fair-minded witness who understood her obligations were to assist the Tribunal at all times. It does consider that the report she prepared and the opinions she expressed in it, as confirmed whilst she was in the witness box, were genuine opinions properly held by her as derived from her clinical observations of the applicant, and her parents together with their surroundings, and from her qualifications and lengthy experience as an Occupational Therapist, plus from her store of specialist knowledge.
Once again, the contents of Ms Van Houston’s report are referred to in their entirety. It is divided into several subject headings, “Background and Assessment Process”, “General Presentation”, “Medical history-diagnosis, symptoms and treatment”, “Functional Status/Capacity”, “Daily care routine”, “Family and home environment” and “Leisure”. Annexure A provided Ms Van Houston’s response to a series of questions that were directed to her in the letter of instruction provided by the respondent’s solicitors.
Several observations should be made about Ms Van Houston’s report. In the section detailing the applicant’s medical history-diagnosis, symptoms and treatment, she has recorded, quite accurately, the conditions from which the applicant suffers. They need not be repeated. Similarly, in the section entitled “Functional Status/Capacity” the matters recorded were the same as other evidence before the Tribunal. With respect to the “Daily care routine”, likewise that was in accordance with the other evidence, both lay and expert that was before the Tribunal. It identified what care and attention was undertaken with respect to the applicant on both schooldays, days when she is at home from school and weekends.
In response to one of the specific questions put to her in the letter of instruction from the respondent’s solicitors Ms Van Houston expressed the opinion that the applicant’s significant functional limitations from her clinical observations were consistent with what had been reported by her parents and Ms Hegan.[25]
[25] This observation is contained in Annexure A of Ms Van Houston’s report in response to question 5.
Ms Van Houston provided a response to a question contained in the letter of instruction concerning her opinion as to the applicant’s reasonable and necessary supports required on a weekly basis. She expressed the opinion that weekly 2:1 support was needed for the applicant’s morning and night routine. This required 2 hours in the morning, 7 days per week which equals a total of 14 hours. Similarly, 2 hours are required in the evening, 7 days per week which equals a total of 14 hours. This was explored whilst she was in the witness box, and as is apparent from reading her report, she confirmed that the 14 hours referred to, such as in the morning was care provided by two individual carers support workers at the same time.[26]
[26] The response of Ms Van Houston in Annexure A to question 6, in her report is referred to. When in the witness box she gave evidence to a similar effect.
In another section of her report addressing a specific question Ms Van Houston expressed concerns with respect to family members being paid support workers. Amongst other things she identified the risk of “burnout for the caregiver, and the potential for a lack of a suitable and experienced support network being available to step in should the family caregivers become ill or unavailable.”[27]
[27] This observation is contained in Annexure A of Ms Van Houston’s report in response to question 8.
A further concern expressed by Ms Van Houston about having support provided exclusively by a family member was that in the long term there is a risk the applicant would become dependent on the family member or members, and then subsequently would not accept any external support worker if something were to happen to the family members providing care. This could lead to an adverse effect for the applicant. She stated to what extent this would occur is difficult to determine due to the applicant’s level of intellectual disability and cognitive impairment.
These concerns were briefly probed by the applicant’s parents when they cross-examined Ms Van Houston. It was suggested to her that the bulk of her report was “geared towards debunking” the applicant’s parents’ request to be exclusive care providers for her. Additionally, it was suggested that Ms Van Houston’s opinion was that such an arrangement was unreasonable and unsustainable. The Tribunal took Ms Van Houston not to agree with this suggestion. Having had the opportunity to observe Ms Van Houston give her evidence, as noted above, the Tribunal is quite satisfied that her report was not geared or directed towards “debunking” the applicant’s parents’ claims. It was a genuinely held professional opinion based upon her clinical observations, specialist knowledge and experience. She was not a witness motivated by such considerations as contended for by the applicant’s parents. For the reasons explained in her report as outlined above, which is accepted by the Tribunal, she had significant reservations about the applicant’s parents’ desires to be paid full time carers for her. It is perfectly understandable when one considers such reasoning from an arm’s length.
CONSIDERATION
Should the applicant’s parents be paid to provide for her care?
At the outset of the consideration of this issue it should be stated that the actual basis of the applicant’s parents’ claims to be paid in an arithmetic sense has shifted in the materials that have been lodged by them.
As noted earlier, in the document dated 14 February 2023 weekly parental remuneration, based upon a timetable contained therein, totalled $6,245.30. This sum sought, it should be pointed out, was claimed by the applicant’s parents at the same time as she continued to receive support from external disability support workers or carers funded by the respondent agency.
Ms Van Houston, as noted earlier, in paragraph 6 of her annexed report “Level of supports”, noted quite accurately that weekly remuneration sought of $6,245.30 equates to an annual amount of $324,755.60. She then opined that such figure seems somewhat inflated given that the average annual salary for a full-time disability support worker in Australia is $67,304.00. The Tribunal totally agrees with such observations as is manifestly apparent from the calculations.
The applicant’s father, as previously observed, when in the witness box disavowed a claim for funding in this sum. It did shift to a claim for some amount, but not in excess of $6,000.00. per week. The applicant’s parents maintained such a position in submissions during the actual hearing. At the conclusion of the hearing, they were invited to and given leave to file further submissions explaining what sums they were actually seeking.
Following the hearing, the applicant’s parents lodged further material by way of submissions in support of their claim, which they contended demonstrated exceptional circumstances justifying them being remunerated by the respondent agency as high intensity support workers or carers. In support of this contention a detailed spreadsheet was annexed to their written submissions. The spreadsheet was divided into days of the week, tasks, the applicable care ratio, the number of hours required per carer, the number of carers and parent carers with a total number of hours per week. The claim for the parents was divided into care provided by “Parent 1”, for a “Weekly Care Amount” of $3,756.34 and “Parent 2” of $2,152.79”. This makes a total of $5,909.13, which equates to a yearly sum of $307,274.76. Such a sum is manifestly excessive when compared with the average annual salary for a full-time disability support worker in Australia identified by Ms Van Houston of $67,304.00.
The Tribunal concludes that the applicant’s parents should not be paid to provide for her care in the manner that they seek. There are several reasons for this.
A starting point is of course the necessity on the part of the decision-maker in deciding whether the applicant’s parents should be paid to provide for her support to be satisfied that such payments made to them would be “Reasonable and necessary supports” within the meaning of s 34 of the NDIS Act. It is not necessary for the purposes of these reasons to reproduce the provisions of s 34 in full. However, this section requires for the purposes of specifying the general supports that will be provided, and the reasonable and necessary supports that will be funded, that the Tribunal as decision-maker must be satisfied of all of the criteria specified in that section in relation to the funding or provision of each such support. It is a matter of construction and application of the section to the facts before it. It has been held that the requirements in s 34 of the Act are stringent and each one of them must be met.[28] One might observe that this is hardly a novel concept of statutory construction.
[28] See for instance, ZNDV and National Disability Insurance Agency (2014) 144 ALD 652 at [18].
Critically, for the purposes of this application, s 34 (1)(c) provides that the decision-maker must be satisfied that the support represents value for money in that the costs of these supports are reasonable, relative to both the benefits achieved and the cost of alternative support.
Ms Van Houston’s unchallenged evidence, which was supported by reference to reputable external material concerning the salaries paid to disability support workers in Australia, demonstrates that the average annual salary for a full-time disability support worker in Australia, is as noted above $67,304.00. This fact alone means that a decision-maker, in the position of this Tribunal cannot be satisfied that the claim made by the applicant’s parents to be paid for her care in the terms that they do (namely the sum of $307,274.76) represents value for money. The costs of these supports sought by them cannot be categorised as reasonable. This is particularly because external disability support workers or carers obtained from an agency or company such as Drake Medox could be obtained for a substantially lower yearly salary. If not a salary of $67,304.00 as cited by Ms Van Houston, presumably for a significantly lesser figure than the one claimed.
It should be recalled that all the expert witnesses who were probed about the ability of Drake Medox to provide such disability support workers or carers did not dispute that organisation’s ability to provide such workers. The only area of some concern, which has been recorded in the evidence of several of those witnesses, including the applicant’s father, was whether such employees would be adequately equipped to properly address and attend to all of the applicant’s highly complex needs. It was considered that any external carers provided by such an organisation would probably need additional training or instruction concerning the applicant’s highly complex needs so that they could adequately and completely care for her. This is understandable and it seems on the evidence before the Tribunal, both from the applicant’s parents and all of the Occupational Therapists, that such additional training or an induction of carers provided by that organisation could be readily undertaken. No one in their evidence was bold enough to suggest otherwise.
Having reached the conclusion that the Tribunal as decision-maker cannot be satisfied that the applicant’s parents’ claim to be paid as her carers in the amount or amounts claimed do not represent value for money as contemplated by s 34(1)(c) of the NDIS Act, in reality it answers the question and resolves the issue against the applicant as a matter of statutory construction.
However, notwithstanding that finding, the Tribunal considers that there are several other reasons why the applicant’s parents should not be paid as her carers. These will be briefly addressed below.
A decision-maker in making an assessment and determination of the reasonable and necessary supports that will be funded for a participant under the NDIS is also bound to apply the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (“the Rules”). Amongst other things, the Rules refers to a number of objects set out in the NDIS Act. They are referred to in their entirety. In “Part 1 What these Rules are about”, Rule 1.2 identifies several objects relevant to the rules which include providing reasonable and necessary supports, including early intervention supports for participants. Rule 1.3 provides that in giving effect to these objects, regard is to be had to the need to ensure the financial sustainability of the NDIS. None of the objects contemplate a system of compensation or remuneration of the type or in the category as sought by the applicant’s parents in this application. One should observe that if this were the intention of Parliament, on such a fundamental question, it is to be expected that it would have said so.
In “Part 3 Assessing proposed supports”, Rule 3.1 “Value for money” it is prescribed that in deciding whether these supports represent value for money in that the costs of these support are reasonable, relative to both the benefits achieved and the cost of alternative support, the decision-maker is to consider several matters. One of those is whether there are comparable supports which would achieve the same outcome at a substantially lower cost. This matter has been addressed above. However, it should be repeated that once again, applying this rule given the evidence of Ms Van Houston, which was not disputed by any witness in their evidence, that the average annual salary for a fulltime disability support worker in Australia is $67,304.00 and that organisations such as Drake Medox are able to provide such support workers for the applicant. The Tribunal therefore concludes that there are comparable supports available, namely through an organisation such as Drake Medox, which would achieve the same outcome at a substantially lower cost as contemplated by Rule 3.1. It is just a much more economically efficient option and a significantly lower cost to the scheme.
“Part 5 General criteria for supports and supports that will not be funded or provided”, specifically includes Rule 5.3 “Supports that will not be funded or provided”, which states that support consisting of income replacement will not be provided or funded under the NDIS. In both documentation that was before the Tribunal and the applicant’s father’s evidence from the witness box, it was suggested that her parents had been unable to obtain or seek employment and were therefore seeking payment as their daughters’ carers. It has been described in various ways including drawing a wage through the funding provided via the NDIS. Given this categorisation of the payments that the applicant’s parents seek as wages (which is income), the Tribunal is persuaded that the support sought does consist of “income replacement” within the meaning of Rural 5.3(b) of the Rules and is therefore support that will not be funded or provided.
Another consideration that the Tribunal considers does weigh significantly against paying the applicant’s parents to provide for her care as sought, is due to her mother’s significant health challenges. It has already been recounted that she suffers from MS and the effect that this has upon her. There was also evidence that she suffers from chronic fatigue. There was before the Tribunal a report dated 10 February 2021 from her treating neurologist. The illness is described by him as a chronic autoimmune condition affecting the brain and spinal cord characterised by recurrent episodes of neurological deficits such as weakness, numbness, incoordination, dizziness and vision loss which can have a significant impact on a person’s function. The deficits can become permanent if the condition becomes progressive.
The specialist pain physician who also prepared a report which was in evidence before the Tribunal described the applicant’s mother’s 26-year history of now progressive MS. He described it as causing moderate to severe disability with impairment of walking function, limitation of engagement with domestic activities of daily living and participation restriction with social activities with NDIS support.
Rule 5.1 of the Rules also provides that a support will not be provided or funded under the NDIS if it is likely to cause harm to the participant or pose a risk to others. Given the specialist medical evidence that is before the Tribunal concerning the applicant’s mother’s condition, not to mention the evidence of her husband which includes that she uses a wheelchair from time to time due to the fluctuating nature of her condition and its symptoms, that she has good days and bad days, together with the fact that she is also a recipient of a disability support pension, it seems manifestly unrealistic to suggest that she can properly discharge the role of a full-time carer. There must be a realistic risk to her as her condition progresses. It also seems on the evidence before the Tribunal when she has a “bad day” she will either struggle or simply not be able to provide the level of care that her daughter requires. This is not good for her, nor her daughter. It does not seem appropriate to impose this demand on her when the agency is prepared to fund an external disability support worker or carer. It seems the very circumstance contemplated by Rule 5.1 (a) of the Rules which will not be funded.
Also, if the respondent agency does fund external carers or support workers as offered it will enable the applicant’s parents to discharge a vital parallel role that all parents do without the burdens of full-time or significant time devoted to it. In a sense they are likely to be more effectively able to meet their daughter’s complex needs.
Parallel with this consideration the evidence of the expert Occupational Therapists should be recalled. There was in the context of the applicant’s parents being paid to undertake this task and reference by each of them to the concept of “carer breakdown” (in the case of Ms Hegan), “burn out for the caregiver” (in the case of Ms Van Houston) and the applicant’s “ongoing care has a gruelling impact on … (her mother’s) health” (in the case of Ms Tivey). Ms Tivey as recorded earlier, observed that the level of disability in a single household comprising of the applicant, her parents and siblings is a highly unique situation and places significant physical, emotional, and financial strain on the family unit. It seems that these professional opinions are properly held and must be viewed with a degree of realism. If the applicant’s parents were paid on a full-time basis to be her carers there must be a distinct and real risk of “carer burnout” or “carer breakdown” or otherwise an amplification of the significant physical, financial and emotional strain on the family unit, which is in no one’s best interests least of all the applicant’s.
Further, with respect to the applicant’s mother she has apparently qualified for a disability support pension. In order to do so she must have satisfied Centrelink to the requisite standard that her functional capacity was so impaired that she is sufficiently restricted in performing a range of activities. If such a conclusion has been reached by an agency such as Centrelink, one has to question whether given such impairments, it is appropriate for her to be undertaking the role of a full-time carer for her daughter.
Finally, another reason why the applicant’s parents should not be paid to provide for her care is because it seems that a more appropriate payment of funding or benefits to them can be obtained through Centrelink. It has been earlier touched on that the applicant’s father gave evidence that his carers’ allowance had been terminated because the applicant had reached the age of 16 years. Her parents were invited to provide to the Tribunal for its consideration documentation provided by Centrelink evidencing such termination of the benefit and hopefully, explaining why. This documentation has not been furnished.
The respondent agency referred the Tribunal to various sources of information including from Services Australia with respect to obtaining a carers payment. Additionally, there was reference to the entitlement of a carer to payment of a benefit when that person provides “constant” support to a person with a disability, and by reason of the provision of such support they are severely restricted or precluded in their capacity to undertake paid employment.[29] An extract of the Guide to Social Security Law (policy) was also reproduced in the respondent agency’s closing submissions. That extract is referred to in its entirety for its full force and effect. It did specify that a carer is said to provide constant care if they personally provide care on a daily basis for a “significant period” during each day. On the evidence before the Tribunal, it seems difficult to comprehend why the applicant’s father would not continue to have an entitlement to the appropriate benefit. He clearly provides such care to the applicant on a daily basis.
WHAT LEVEL OF CARE WORKER ASSISTANCE CONSTITUTES REASONABLE AND NECESSARY SUPPORT FOR THE APPLICANT?
[29] Social Security Act 1991 (Cth), Part 2.5 – Carer Payment.
The respondent agency has submitted that the applicant’s plan should be varied to provide for additional or further funding to engage appropriate disability support workers (to replace current daily activities funding) as follows:
(a)Assistance with self-care activities, high-intensity, weekday:
i.20 hours per week (4 hours per day x 5 days),
(b)Assistance with self-care activities, standard intensity, weekday;
i.25 hours per week (4 hours per day x 5 days; + 5 hours once a week);
(c)Assistance with self-care activities, high intensity, on weekdays when the applicant is not at school;
i.141 days at 9 hours per day;
(d)Assistance with self-care activities, standard-intensity, Saturday;
i.4 hours x 52 weeks,
(e)Assistance with self-care activities, standard-intensity, Sunday;
i.4 hours x 52 weeks,
(f)Assistance with self-care activities,high-intensity, Saturday;
i.9 hours x 52 weeks,
(g)Assistance with self-care activities,high-intensity, Sunday;
i.9 hours x 52 weeks,
(h)Active overnight with high-intensity support worker;
i.7 nights per week.
The level of funding proposed by the respondent agency largely accords with the evidence that was provided by the Occupational Therapists both in their reports and from the witness box.
There was the evidence from the Occupational Therapists concerning the applicant’s support worker requirements given a typical daily care routine, daily schedule or “timetable” on a Monday to Friday when she is attending school. That evidence was that in the morning between 4:30 AM and 6:30 AM (2 hours) the applicant typically requires 2 support workers for carrying out such tasks as showering, drying, hoisting in and out of her bed and to her wheelchair, and changing various soiled linens. In the evening, usually between approximately 5.00 PM and 7.00 PM, 2 support workers are required to carry out similar tasks which include hoisting from her wheelchair to her bed, changing incontinence pads, complete stretching, and muscle ranging.
Given the evidence of the Occupational Therapists about her typical daily care routine on a Monday to Friday whilst attending school, which is accepted by the Tribunal, it considers that the level of funding proposed in paragraph 139(a) and (b) above is reasonable and necessary support as contemplated by both s 34 of the NDIS Act and Part 3 of the Rules.
It will be recalled that although the applicant is notionally enrolled in school for 5 days a week, the realities are that due to her disabilities, more often than not, she is in a typical week only at school for three of those days. This evidence was confirmed by both the applicant’s father when he was in the witness box, and of course, the Occupational Therapists.[30]
[30] The Occupational Therapists gave similar evidence concerning this fact. For instance, Ms Van Houston in her report, in the table contained in paragraph 7, under the heading "Comments", recorded that the applicant would stay at home two days a week when she was unwell. Ms Tivey in her report under the heading "SCHOOL", recorded that the applicant regularly only attends school three times per week. Ms Hegan gave evidence to a similar effect.
As for the provision of reasonable and necessary supports during the days when the applicant is unable to attend school, the applicant’s father, the Occupational Therapists together with her treating paediatrician Dr Loveday, largely accepted that such supports could be provided by an agency or external provider such as Drake Medox. Whilst there was no further evidence about that organisation and its capacity to provide such supports, the Tribunal considers that there is no reason not to accept that it can provide support workers as required by the applicant on these occasions from time to time. No one suggested otherwise during their evidence in the hearing of the application.
The respondent agency has proposed that the applicant’s plan be varied to provide that for the 2 days per week when she may not be at school, or on days that are otherwise school holidays, supports by way of funding for one high-intensity support worker for 9 hours per day (in addition to the 2 hours in the morning and evening as previously described) and a standard intensity support worker for 5 hours, once a week, to provide a second support where one of the parents may be unavailable to fulfil that role.
The Tribunal considers, given the evidence of particularly the Occupational Therapists on this topic, that the support proposed by the agency for such days when the applicant is not at school are reasonable and necessary supports for the applicant as contemplated by s 34 of the NDIS Act and Part 3 of the Rules.
Finally, with respect to weekends the agency has proposed funding the beginning and the end of the day in a similar manner to that proposed for weekdays between the hours of 4:30 AM and 6:30 AM in the morning and 5.00 pm and 7.00PM in the evening. It has also proposed an additional 5 hours for a high-intensity support worker in addition to the two hours in the morning and evening which it described in submissions as “bookend hours”.
It seems to the Tribunal that this additional funding proposed over the weekend by the respondent agency would enable the applicant and her family to a considerable degree to engage in various activities that were described by her father in his evidence. These activities included such things as excursions to the zoo, attending a concert, watching a film, socialising or going out. Once again, this proposal by the respondent agency does not seem at odds with any of the evidence of the Occupational Therapists who gave evidence. Therefore, the Tribunal concludes that the support proposed by the respondent agency for weekends is reasonable and necessary as contemplated by s 34 of the NDIS Act and Part 3 of the Rules.
Finally, with respect to the respondent agency’s proposals for additional or further funding to engage appropriate disability support workers (to replace current daily activities funding) that have been referred to above, it should be noted that, save for what has already been recorded in these reasons concerning the applicant’s parents requests to be funded, there were no other submissions or contentions concerning reasonable and necessary funding levels for the supports sought. In the absence of such submissions or contentions providing an alternative means of calculating such funding, the Tribunal sees no reason not to accept the proposals of the respondent. The reasons for doing so having been explained above.
CONCLUSION AND DECISION
By reason of the foregoing matters the applicant’s plan of 6 June 2023, being the reviewable decision, be varied so that reasonable supports be provided for her as follows:
(a)Assistance with self-care activities, high-intensity, weekday:
i.20 hours per week (4 hours per day x 5 days),
(b)Assistance with self-care activities, standard intensity, weekday;
i.25 hours per week (4 hours per day x 5 days; +5 hours once a week);
(c)Assistance with self-care activities, standard-intensity, on weekdays when the applicant is not at school;
i.141 days at 9 hours per day;
(d)Assistance with self-care activities, standard-intensity, Saturday;
i.4 hours x 52 weeks,
(e)Assistance with self-care activities, standard-intensity, Sunday;
i.4 hours x 52 weeks,
(f)Assistance with self-care activities, high-intensity, Saturday;
i.9 hours x 52 weeks,
(g)Assistance with self-care activities, high-intensity-, Sunday;
i.9 hours x 52 weeks,
(h)Active overnight with high-intensity support worker;
i.7 nights per week.
I certify that the preceding 152 (one-hundred-and-fifty-two) paragraphs are a true copy of the reasons for the decision herein of R Cameron, Senior Member
......................[SGD]...........................
AssociateDated: 7 June 2024
Date of hearing: 10 & 11 April 2024 Advocates for the applicant: By her parents, self-represented
Solicitors for the respondent:
AAT Dispute Resolution and Litigation Branch, National Disability Insurance Agency
Counsel for the respondent: Mr John Bird
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