Forbes and National Disability Insurance Agency
[2023] AATA 2408
•7 August 2023
Forbes and National Disability Insurance Agency [2023] AATA 2408 (7 August 2023)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2021/1771
Re:Emma Forbes
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Senior Member J Collins
Date:7 August 2023
Place:Brisbane
The Tribunal affirms the decision under review.
..................................[SGD]......................................
Senior Member J Collins
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – access criteria- NDIS Act s24(1)(c) – s24(1)(e) – s25 - end stage kidney disease - whether applicant meets disability requirements - whether impairments substantially reduce functional capacity- whether applicant meets early intervention requirements - whether likely to require support under National Disability Insurance Scheme for applicant’s lifetime - whether supports more appropriately funded through another service system
Legislation
Administrative Appeals Tribunal Act 1975(Cth) section 43
National Disability Insurance Scheme Act 2013 (Cth) sections 3, 4, 21, 22, 23, 24, 25, 27, 100, 103, 209National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth) rules 2.5, 5.4, 5.5, 5.6, 5.7, 5.8, 6.1
Cases
G v Minister for Home Affairs [2019] FCAFC 79
G v Minister for Immigration and Border Protection [2018] FCA 1229
National Disability Insurance Agency v Foster [2023] FCAFC 11
Mulligan v NDIA [2015] FCA 544; (2015) 233 FCR 201Re Drake and Minister for Immigration and Ethnic Affairs (No 2) [1979] 24ALR 577
Secondary Materials
NDIS - Applying to the NDIS guidelines, as of 1 July 2022.
NDIS - Assistive technology operational guidelines, as of 16 February 2023
REASONS FOR DECISION
Senior Member J Collins
Ms Emma Forbes is a 45-year-old woman, who has a diagnosis of End Stage Kidney Disease (‘ESKD’). In January 20221 Ms Forbes applied to the National Disability Insurance Agency (‘the Agency’) for access to the National Disability Insurance Scheme (‘the scheme’) so that she could receive supports. The supports sought included assistance with meals and maintaining her home.[1] That application was refused by the Agency at first instance and again upon internal review. Ms Forbes has now applied to the Administrative Appeals Tribunal (‘the Tribunal’) for review of that decision (‘the decision under review’).[2]
[1] T3.
[2] T1; section 103 NDIS Act.
For the reasons set out below, the Tribunal affirms the decision under review.
BACKGROUND TO THE APPLICATION TO THE AGENCY
On 24 February 2021 the Agency affirmed its original decision to refuse Ms Forbes access to the scheme. The Agency maintained that Ms Forbes did not meet the ‘disability requirements’ in section 24 of the National Disability Insurance Act 2013 (‘the NDIS Act’) or the ‘early intervention requirements’ in section 25 of the NDIS Act.[3] The Agency relied on the following:
·Subsection 24(1)(c) - that Ms Forbes’ disability did not result in a substantial reduction in her functional capacity;
·Subsection 24(1)(e) - that Ms Forbes was likely to require lifetime support from the scheme;
·Subsection 25(1)(b) - that early intervention supports will reduce Ms Forbes’ future needs for supports; and
·Subsection 25(1)(c) - that early intervention supports will mitigate or alleviate the impact of Ms Forbes impairment upon her functional capacity.[4]
[3] T2.
[4] T1A; T2.
THE NATIONAL DISABILITY INSURANCE ACT 2013 (Cth)
The disability requirements are contained in section 24 of the NDIS Act and provide as follows:
1.A person meets the disability requirements if:
(a)the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or the person has one or more impairments to which a psychosocial disability is attributable; and
(b)the impairment or impairments are, or are likely to be, permanent; and
(c)the impairment or impairments result in substantially reduced functional capacity to undertake one or more of the following activities:
(i)communication;
(ii)social interaction;
(iii)learning;
(iv)mobility;
(v)self-care;
(vi)self-management; and
(d)the impairment or impairments affect the person’s capacity for social or economic participation; and
(e)the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime.
2. For the purposes of subsection (1), an impairment or impairments that vary in intensity may be permanent, and the person is likely to require support under the National Disability Insurance Scheme for the person's lifetime, despite the variation.
3.For the purposes of subsection (1), an impairment or impairments that are episodic or fluctuating may be taken to be permanent, and the person may be taken to be likely to require support under the National Disability Insurance Scheme for the person's lifetime, despite the episodic or fluctuating nature of the impairments.
4.Subsection (3) does not limit subsection (2).
The requirements of section 24 of the NDIS Act are cumulative and all criteria must be met.
The early intervention requirements are contained in section 25 of the NDIS Act provide as follows:
1. A person meets the early intervention requirementsif:
(a)the person:
(i)has one or more identified intellectual, cognitive, neurological, sensory or physical impairments that are, or are likely to be, permanent; or
(ii) has one or more identified impairments to which a psychosocial disability is attributable and that are, or are likely to be, permanent;
(iii)is a child who has developmentaldelay; and
(b)the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by reducing the person's future needs for supports in relation to disability; and
(c)the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by:
(i)mitigating or alleviating the impact of the person's impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management; or;
(ii)preventing the deterioration of such functional capacity; or
(iii)improving such functional capacity; or
(iv)strengthening the sustainability of informal supports available to the person, including through building the capacity of the person's carer.
Likewise, the requirements of section 25 of the NDIS Act are cumulative and all criteria must be met
Section 27 of the NDIS Act provides for the making of rules in relation to the disability requirements and the early intervention requirements. The relevant rules in respect of this review are the National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (‘the NDIS Rules’).
The Agency also issues Operational Guidelines in relation to dealing with the assessment of whether a person meets the disability requirements or the early intervention requirements. The relevant guidelines in this review are the NDIS - Applying to the NDIS guidelines (‘the Access Guidelines).[5] There is no power conferred by the NDIS Act to make these Operational Guidelines, and they are issued in an exercise of executive power.[6] The Tribunal is therefore not bound by any policy set out in the Agency’s Operational Guidelines; however, in Re Drake and Minister for Immigration and Ethnic Affairs (No 2)[7] the Federal Court held that a Tribunal should take into account relevant government policy which is not inconsistent with the provisions or objects of the legislation. Further guidance for the proposition that the Tribunal is not bound by policy is found in G v Minister for Immigration and Border Protection[8] where Mortimer J held:
‘Justice or injustice is not found within a policy. It is found by looking at the overall circumstances of an individual’s case with the principal focus bring on the purpose and context of the statutory power, not the executive policy framed to guide it …’[9]
[5] ourguidelines.ndis.gov.au: Applying to the NDIS
[6] G v Minister for Home Affairs [2019] FCAFC 79 at [18].
[7] [1979] 24 ALR 577 at [590].
[8] [2018] FCA 1229.
[9] Ibid, at [171].
Therefore, unless the Access Guidelines are inconsistent with the provisions or objects of the legislation, they should be considered in any determination of whether Ms Forbes meets the disability requirements or the early intervention requirements.
Whether Ms Forbes meets the disability requirements, or the early intervention requirements is a question of fact to be determined on the balance of available evidence. The Tribunal is required to undertake a ‘fact-finding task’[10] with a relatively high degree of precision and be positively satisfied[11] that Ms Forbes meets either the disability requirements or the early intervention requirements.
[10] National Disability Insurance Agency v Davis [2022] FCA 1002 at [42].
[11] Mulligan v National Disability Insurance Agency (2015) 233 FCR 201 at 213 [55] cited in Re Schwass and National Disability Insurance Agency [2019] AATA 28 at [55]; National Disability Insurance Agency v Davis [2022] FCA 1002 at [61].
BACKGROUND
Ms Forbes suffers from medullary cystic disease (‘MCD’), a genetic condition which has, overtime, resulted in her kidneys no longer functioning. This is stage of MCD is known as end-stage kidney disease (‘ESKD’). There is no dispute that Ms Forbes has ESKD.[12]
[12] T3; A5.
The Agency accepts that Ms Forbes has a disability which is attributable to a physical impairment caused by her ESKD.[13] There is no cure for ESKD and the Agency also accepts that Ms Forbes’ physical impairment due to ESKD is permanent.[14].
[13] Section 24(1)(a) NDIS Act.
[14] Section 24(1)(b) NDIS Act.
As Ms Forbes’ kidneys no longer function she must rely on kidney replacement therapy (‘KRT’) to survive. KRT is directed at preventing and managing the complications of her ESKD and prolonging her life.[15] There are two types of KRT. The first is a kidney transplant, the second is dialysis. If Ms Forbes is not treated with some form of KRT she will not survive. A kidney transplant is generally accepted as the best and most preferrable form of KRT for ESKD.[16]
[15] A3; A6.
[16] Letter of Andrea Ward dated 11 October 2022.
Ms Forbes’ treatment history.
Ms Forbes was diagnosed with MCD at 7 years of age. In 1983 she received her first kidney transplant, donated by her mother. In 2018, this kidney transplant failed and Ms Forbes commenced peritoneal dialysis (‘PD’).[17]
[17] S1.
At the time of Ms Forbes’ application to the Agency in January 2021, she was receiving PD and on the waiting list for a second kidney transplant.
In November 2021, Ms Forbes was fortunate to receive a second kidney transplant. Therefore, at the time of the Tribunal hearing Ms Forbes was at a stage of 12 months, post- operatively, from her second kidney transplant.
Evidence about Ms Forbes.
Ms Forbes lives alone in a privately rented apartment in Toorak, Victoria and has done so for the past 7 years. Her apartment is accessible via three flights of stairs from the street level.[18]
[18] A2.
Ms Forbes works full-time as a personal assistant for a corporate entity.[19] She described her job as mainly a ‘desk job’ and computer-based. She completes her work mostly in a seated position,[20] however at times she is required to undertake errands out of the office. Working in a full-time capacity is a financial necessity for Ms Forbes[21] and she has a ‘...will to identify as a contributing and independent person, despite her disability and her responsibility to her financial obligations’.[22] She enjoys her work and her ability to maintain her financial independence, which includes her rental expenses. Ms Forbes described herself as ‘…an independent individual who is solely financially responsible for all of my living expenses’.[23]
[19] A3.
[20] A6.
[21] Transcript page 20 lines 31-32.
[22] A6.
[23] A3.
Ms Forbes described ESKD as an ‘unseen physical permanent impairment’.[24] She has been on medication, including ‘immunosuppressants’ since she was 14 years of age. She referred to her daily medication as a ‘life-long commitment’.[25] Immunosuppressants are an ‘anti-rejection medication’ which must be taken by Ms Forbes to reduce the ability of her body to reject her transplanted kidney.
[24] Transcript page 13 lines 17-18.
[25] A3.
Ms Forbes prioritises ‘staying well’ so that she can continue working for as long as possible, thereby maintaining her lifestyle and independence.[26] She has a driver’s license and is able to drive herself to work when feeling well enough. When she is feeling too unwell to drive, she will use taxis.
[26] A3.
Ms Forbes contends that PD and a kidney transplant each have ‘different’ and significant ‘challenges’.[27] Having received both types of KRT, Ms Forbes gave evidence in relation to these challenges and also the impact upon her functional capacity in the context of both PD and a kidney transplant.
Kidney transplant
[27] Transcript page 20 line 19.
A kidney transplant involves the transplant of a donated kidney into Ms Forbes’ body. As the transplanted kidney is effectively a ‘foreign body’ Ms Forbes must take immunosuppressant medication to suppress her own immune system from ‘attacking’ the transplanted kidney. Simply put, the effect of the immunosuppressant medication is to make Ms Forbes’ body more compatible with her transplanted kidney. Unfortunately, taking immunosuppressants has ‘enormous’ side-effects on Ms Forbes including lethargy, nausea and being more prone to infection.[28]
[28] Transcript page 14 lines 13-22.
Notwithstanding and despite immunosuppressant therapy, ‘antibodies’ will inevitably build-up in Ms Forbes body. This build-up of these antibodies compromises the likely success of a third kidney transplant in future.[29]
[29] Transcript page 14 lines 43-47.
Ms Forbes has already had two kidney transplants. She has been advised that her second kidney transplant is unlikely to last for the remainder of her lifespan.[30] The success and longevity of her second kidney transplant is therefore extremely important to her and a source of significant concern. Understandably Ms Forbes stated, ‘but I am very young, I have got a lot of life to live’.
[30] A1.
In addition to taking immunosuppressants, having had a kidney transplant requires a high level of monitoring and medical review. This includes frequent medical appointments, blood and urine tests, biopsies and bone scans.
Maintenance of a balance healthy diet in the context of ESKD is also extremely important. Whilst a kidney transplant does not require the same level of dietary restrictions as those associated with PD, a ‘holistic approach’ to diet remains extremely important.[31]
Dialysis
[31] Transcript page 24 lines 5-6.
Failure of Ms Forbes’ second kidney transplant means that she will have to resume PD as a means of life support. On the basis a third transplant is not possible, or not successful, dialysis will thereafter be the only form of KRT available to Ms Forbes.[32]
[32] Transcript page 22 lines 18-22.
PD, like a kidney transplant, is also a therapy with a ‘life span’, Ms Forbes explained ‘at the most 10 years before your body cannot handle the therapy anymore’.[33]
[33] Transcript page 15 lines 3-5.
PD is an onerous process and involves a significant amount of time, energy and planning. PD requires Ms Forbes to be connected to a Continuous Ambulatory Peritoneal Dialysis machine (‘dialysis machine’) via a catheter, each night for eight to nine hours, after an initial set up of 20-30 mins.[34] The process of PD provides sterile cleansing fluid exchanges which remove waste products from her body and excess fluid. Whilst connected to the dialysis machine, there are constant sleep interruptions. These interruptions are due to ‘restless legs’, ‘drain pain’ and the regular sound of the alarm system of the dialysis machine with various alerts.
[34] A3.
Despite the life-saving benefits of PD, there are consequences. These consequences include the development of ‘uremic symptoms’ which include significant fatigue, lethargy, nausea.
It is imperative that Ms Forbes ensures her diet is carefully managed whilst on PD. This is done ideally by consuming fresh foods and avoiding take away or processed foods high in compounds such as phosphate, potassium and sodium. The preparation and consumption of fresh foods is important; however, due to the demands of her full-time employment Ms Forbes does not always feel well enough to prepare a fresh food meal at the end of the day.[35]
Living with ESKD
[35] S1; A3.
As a consequence of ESKD, Ms Forbes described the limitations on her energy levels and her overall functional capacity in the context of severe and ongoing tiredness and fatigue. She explained that each day she must ‘choose’ how and when she uses her finite energy levels. In practical terms, and as a matter of necessity, Ms Forbes must forfeit certain activities in favour of others.
Ms Forbes prioritises working full-time at the expense of many other activities. These include daily activities such as grocery shopping, cooking, cleaning and laundry. Also forfeited and compromised is her social participation in activities such as spending time with friends.[36]
[36] Transcript page 20 lines 43-44.
Ms Forbes receives a significant amount of assistance from her 70-year-old mother. Ms Forbes’ mother generally attends at Ms Forbes’ home each week to help with cooking, cleaning, grocery shopping, changing bed linen and washing.[37] Her mother will also bring meals that can be frozen and eaten a later time. Ms Forbes is concerned should her mother no be longer able to provide her with this support.[38]
[37] Transcript page 18 lines 35-36, page 19 lines 2-4.
[38] Transcript page 18 line 16-17.
Ms Forbes finds working full-time challenging due to ongoing tiredness and lethargy. She stated it takes ‘great effort to continue to attend working’.[39] Ms Forbes manages this fatigue by working from home on a number of days during the week. On the weekend she will often sleep until midday and use the remainder of the weekend to prepare for the week ahead.[40]
[39] A6.
[40] A3.
Ms Forbes has a small friendship group which consists of her mother, and two friends, ‘M’ and ‘S’. She states that she finds it incredibly difficult to socialise because she simply does not have sufficient energy to do so[41] and is physically incapacitated by ‘extreme fatigue’.[42] Ms Forbes chooses to use her limited ‘energy to go to work’ at the compromise of attending to activities at her home or spending time with friends.[43]
[41] Transcript page 19 line 45-46.
[42] A6.
[43] Transcript page 20 lines 40-45.
The requirement to take immunosuppressant medication also affects Ms Forbes’ ability for social interaction. Given immunosuppressant medication increases her risk of communicable diseases Ms Forbes stated that she must be cautious and restrictive of community activities such as going to the gym, a shopping mall, or events with crowds.[44]
[44] A6.
Evidence of Dr Charles Okraglik.
Dr Okraglik is Ms Forbes’ general practitioner. Dr Okraglik’s opinion, in January 2021, was that Ms Forbes required assistance with her self-care and self-management. At the time of providing his opinion Ms Forbes was receiving PD and on a waiting list for her second kidney transplant. Dr Okraglik stated that Ms Forbes tired easily due to her kidney disease and that this affected her ability to maintain her home and cook meals.[45]
[45] T3.
Evidence of Susan Forbes.
Susan Forbes (‘SF’) is Ms Forbes’ mother. She is 70 years of age and resides in Barwon Heads, Victoria, a driving distance of approximately one and a half hours from where Ms Forbes resides.
SF gave evidence that ESKD affects almost every area of Ms Forbes’ life.[46] She referred to a lifetime struggle to deal with ‘everyday life’.[47] SF explained that Ms Forbes’ level of support had varied over time, but for the most part had been fairly significant.[48] SF stated: ‘...it’s just been a very long and very hard struggle’.[49]
[46] A4.
[47] Transcript page 60 line 5.
[48] Transcript page 60 line 8.
[49] Transcript page 60 lines 14-15.
SF confirmed that Ms Forbes’ episodes of extreme tiredness and fatigue were frequently to the point of complete exhaustion. She referred also to many other difficulties experienced by Ms Forbes due to ESKD. These included anemia, nausea, high blood pressure, side effects of immunosuppressants, attending doctor’s appointments, blood tests, biopsies and managing a complicated medication regime.[50]
[50] A4.
SF explained her current routine of travelling from her home at Barwon Heads to Ms Forbes’ home in Toorak, Melbourne, ‘at least once a week’ to assist with various tasks including ‘shopping, cleaning, housework, those sorts of things’.[51] She also prepares multiple meals for Ms Forbes which she can freeze and eat at a later date.
[51] Transcript page 60 lines 8-11.
SF also assists Ms Forbes by driving her to medical appointments when she is too unwell to drive herself.[52] SF indicated that, at her age, the drive from Barwon Heads to Melbourne was becoming harder. SF acknowledged that some weeks she did not travel to Melbourne to assist Ms Forbes, however that this was not very often.[53] When a week of assisting Ms Forbes is missed, she described an accumulation of tasks upon her eventual return. These include a volume of dishes to be washed, laundry that would not have been done.[54] SF also stated ‘there wouldn’t be food there that’s she’s able to eat’.[55]
[52] A4.
[53] Transcript page 60 lines 33-34.
[54] Transcript page 61 line 20.
[55] Transcript page 60 lines 41–43.
SF stated that it upsets her when she observes Ms Forbes has not washed her hair or showered properly.[56]
[56] Transcript page 61 lines 1-3.
SF confirmed strict dietary guidelines when Ms Forbes was receiving PD. Notwithstanding, a healthy dietary regime still applied in the context of a kidney transplant, albeit to a lesser extent. She referred to Ms Forbes’ history of high blood pressure[57] and stated she ‘can’t just eat anything’.[58]
[57] Transcript page 61 lines 13-14.
[58] Transcript page 61 line 45.
SF’s opinion is that the demands of dialysis are balanced against a different set of demands that relate to a kidney transplant.[59] In comparing the two treatments SF stated:
‘I would say that she is slightly less fatigued (with a kidney transplant), I would say that the demands of a new transplant in terms of hospital visitations, appointments, they’re far more demanding than they were, so I guess, the balance of one against the other’.[60]
[59] Transcript page 62 lines 32-42.
[60] Transcript page 61 lines 24-27.
SF’s opinion is that the slow deterioration of Ms Forbes’ kidney function over her lifetime, and her eventual ESKD had taken a ‘toll’. She stated:
‘So it’s just starting to take a toll, I think that’s why she’s…tired, and struggling more as she’s become older. …………The blood pressure is a problem, that’s come along. Also, the fact that the immunosuppression is very high and has had, you know, so many side effects as well, yes, it’s just if you have a chronic illness like this and you have it for 40 years, you know, it just does damage over time’.[61]
[61] Transcript page 62 lines 6-15.
SF explained that Ms Forbes prioritises work at the expense of other activities in her life, and this means that she is not able to fully participate ‘fully in life’.[62] SF stated:
‘I just don’t feel she has enough energy for the rest of her life in order to go out, meet friends, have relationships, pets, you know, take care of herself in terms of doing exercise, you know, I think all she has the energy for most of the time is to do her work that she has to do and the rest of the time is just resting, or it’s a struggle. I just feel very much concerned that I would feel like I need to help her more, if I can. But it’s getting harder for me to, as I am getting older….’.[63]
[62] Transcript page 63 line 6.
[63] Transcript 62 lines 23-29.
SF referred to Ms Forbes’ motivation to maintain full-time employment and stated:
‘Emma has always made her paid work a priority, she is very aware of the high levels of poverty faced by people with disability and understands she would be unable to maintain her independence with adequate financial support’.[64]
[64] S2; A4.
SF stated that on a personal level, she experienced increased difficulty in providing support and assistance to her daughter.[65]
[65] S3; A4.
Evidence of Dr David Barit, Nephrologist.
Dr David Barit, Nephrologist, provided evidence confirming Ms Forbes’ diagnosis of ESKD and the serious associated complications which include fatigue, difficulty walking, blurred vision, problems with thinking, learning and planning together with the potential for serious impact upon mental health. Dr Barit confirmed the requirement for ongoing treatment for the remainder Ms Forbes’ life. He also states Ms Forbes’ ESKD substantially limited many of her major life functions and restricted her ability to participate in normal activities. He confirmed the role of immunosuppressant medication to prevent rejection of Ms Forbes’ transplanted kidney, and that by limiting social interaction possible exposure to Covid-19 and other communicable diseases can be limited.[66]
[66] A5.
Evidence of Dr Michael Cai, Nephrologist.
In correspondence dated March 2021, Dr Cai confirmed that Ms Forbes was dependent upon peritoneal dialysis and on the waiting list for a kidney transplant.[67] In his further correspondence of May 2021 Dr Cai explained:
‘ESKD means that you have irreversible kidney failure and you are dependent on renal replacement therapy for the rest of your life. Kidney transplant is the best form of kidney replacement therapy and likely to improve your symptoms of ESKD, but it is not a cure for ESKD. Furthermore, I don't expect that your next kidney transplant to last your lifespan…’.[68]
[67] T4.
[68] A1.
In referring to the ‘burden’ of ESKD and the complications which accumulate over time, Dr Cai identified Ms Forbes’ kidney function had been poor since childhood.[69] He also referred to the effect of associated lethargy on the ‘demands of day-to-day life’.[70]
[69] Transcript (day 3) dated 21 February 2023, page 31 lines 34-35.
[70] T4.
In his oral evidence Dr Cai, explained he had been Ms Forbes’ treating nephrologist in relation to her dialysis treatment only.[71] As Ms Forbes has now had a kidney transplant he is no longer responsible for her care.
[71] Transcript (day 3) page 28 lines 16-18.
Dr Cai explained that kidney failure results in the accumulation of toxins which are harmful to the human body. In order to prevent death from kidney failure a person must therefore either have dialysis treatment or receive a kidney transplant.[72] A kidney transplant is considered the preferable treatment[73] however is by no means comparable to the renal function of a natural functioning kidney. This is for a number of reasons which include the following:
·There is simply not the same kidney mass. The human body has two kidneys, whilst those receiving a kidney transplant have one transplanted kidney;
·The quality of the transplanted kidney can be variable; and
·There are ongoing immunity issues and a risk of rejection of the transplanted kidney.[74]
[72] Transcript (day 3) page 27 lines 21-26.
[73] Transcript (day 3) page 29 lines 13-14.
[74] Transcript (day 3) page 29 lines 17-30.
Dr Cai also explained that a kidney transplant was not a permanent treatment, stating ‘most transplants fail’.[75] He emphasised the importance that a kidney transplant last as long as possible and difficulty of making any predication as to the longevity of a kidney transplant. For many recipients, a kidney transplant may not fail until after 10 to 15 years, whereas others may have the benefit of a kidney transplant for 25 to 30 years. Notwithstanding, he has seen patients whose transplants have failed after as little as three months. In terms of the likelihood of the failure of a kidney Dr Cai acknowledged’ ‘it could happen at any time’.[76]
[75] Transcript (day 3) page 32 line 7.
[76] Transcript (day 3) page 31 line 21.
Candidacy for future and successive kidney transplant depends on a variety of factors including the volume of antibodies already accumulated in a recipient’s body as a consequence of previous transplants. Dr Cai explained that it is the accumulation of antibodies that makes subsequent and successive transplants more challenging.[77]
[77] Transcript (day 3) page 30 lines 24-32.
Dr Cai confirmed based on ‘first principles’ the importance for Ms Forbes to maintain medication compliance and a healthy lifestyle with exercise and dietary consideration.[78]
[78] Transcript (day 3) page 37 lines 11-12; 20-22.
In respect of PD as a treatment for kidney failure, Dr Cai advised of a 5-year survival rate for dialysis treatment, which he explained was a worse survival rate than a lot of stage 4 cancers.[79] He described PD as ‘very draining' and requiring a lot of mental and physical energy.[80]
[79] Transcript (day 3) page 30 lines 13–15.
[80] Transcript (day 3) page 32 lines 22–28.
Dr Cai referred to the development of uremic symptoms associated with kidney failure. These symptoms include tiredness, lethargy, anorexia, nausea and dizziness.[81] At first Dr Cai stated that uremic symptoms would be expected not ‘play a major part’ with a well-functioning kidney.[82] In a question from the Tribunal Dr Cai however qualified that uremic symptoms can occur in the context of both dialysis and a kidney transplant and that ‘as a kidney transplant fails, you will start accumulating, what we’ll call, uremic symptoms’.[83]
[81] Transcript (day 3) page 32 lines 12-31, page 42 line 24.
[82] Transcript (day 3) page 32 lines 44–45.
[83] Transcript (day 3) page 32 lines 11-12.
Dr Cai was cross-examined in relation to the likely alleviation of Ms Forbes’ symptoms following her second kidney transplant. Appropriately, he acknowledged that his treatment of Ms Forbes related to her PD and not her ongoing care.[84] He was careful to point out that he could only respond in the ‘hypothetical’ given he had not seen Ms Forbes since her second kidney transplant.[85]
[84] Transcript (day 3) page 41 lines 45-46
[85] Transcript (day 3) page 42 line 40 to page 43 line 3.
Evidence of Courtney Murray, Occupational Therapist.
Ms Murray assessed Ms Forbes’ functional capacity in January and February 2022, several months after her second kidney transplant.
Ms Murray’s opinion is that Ms Forbes relies heavily on her mother for support and this level of reliance is beyond what would be reasonably expected of a parent by a woman of Ms Forbes’ age. Her assessment concluded that Ms Forbes required weekly assistance to prepare meals so that she can maintain a healthy diet and conserve her energy. Also, that Ms Forbes requires weekly cleaning/laundry services to take over from the support her mother provides.
Ms Murray’s report refers to two aspects relevant to Ms Forbes’ ability to function. Firstly, her use of ‘compensatory strategies’ to reduce the load on her body. Secondly, her use of strategies to conserve her limited energy. [86]
[86] Transcript page 71 lines 29-31.
A Berg Balance test conducted by Ms Murray indicated that Ms Forbes represented a ‘low risk of falls’.[87] Ms Forbes was however observed to use compensatory strategies when undertaking tasks such as brushing her teeth, preparing a meal, sitting to stand, kneeling down to reach items on the floor and navigating stairs. Examples of these strategies include the use of support objects such as table-tops, benches and stair rails. Ms Murray’s opinion is that Ms Forbes uses these compensatory strategies as a consequence of her limited core strength and fatigue, and to ‘protect herself’ from abdominal pain and stability issues (Tribunal emphasis added).[88]
[87] Transcript page 69 line 42.
[88] R1; Transcript page 72 lines 13-18.
In terms of energy conservation Ms Murray identified Ms Forbes’ reliance on her mother for healthy meal preparation, home management support with laundry, washing dishes, making her bed, sweeping and vacuuming. In terms of energy conservation Ms Murray identified that Ms Forbes ‘must be mindful of energy conservation on a daily basis’ and that it would be ‘quite difficult’ for Ms Forbes to maintain an independent life without support.[89] Ms Murray stated there were ‘definitely things’ required to support Ms Forbes’ life choices of working full-time and living independently such as healthy meal preparation, home management support and cleaning.[90]
[89] R1; Transcript page 88 lines 14-17.
[90] Transcript page 88 lines 8-11.
Ms Murray recognised Ms Forbes as ‘relying heavily’ on her mother for these supports and stated that Ms Forbes‘ mother is playing a ‘vital role’ to increase her capacity to function in daily life.[91] Ms Murray referred to Ms Forbes’ working and social life as being ‘significantly impacted upon by her need to conserve energy’’[92]
[91] Transcript page 77 lines 38-47.
[92] R1.
Ms Murray’s functional assessment of Ms Forbes took place over a period of just over one hour.[93] Appropriately, Ms Murray was careful to qualify her assessment and in oral evidence she stated:
‘So I was able to assess Ms Forbes and her capacity to participate in a range of the activities that she would typically do within her own home, so in a location that was familiar to her. So I would say that this provided me with insight into strategies that she’s using within her home, to reduce her load on her body and to help her conserve energy, however, I would say that because this condition is variable it does make it difficult to determine the presentation of Ms Forbes during an acute episode of fatigue and dizziness, and during the day that I saw Ms Forbes she was not reporting fatigue or dizziness’.[94]
[93] Transcript page 71 line 17.
[94] Transcript page 71 lines 31-34.
Ms Murray also accepted the relevance that her assessment was conducted on a day when Ms Forbes had not been to work. Given her assessment took just over one hour she also further qualified her opinion as follows:
‘I was basing my assessment and my opinion based on the assessments we did together that day. So, I agree that there are definitely limitations in terms of assessing you for a longer period of time’.[95]
[95] Transcript page 83 lines 31-33.
Ms Murray further acknowledged that her assessment had been conducted in the morning, and had it been conducted at the end of a working day there would have been an increase in exhaustion or fatigue over the day.[96] In response to a question by the Tribunal Ms Murray stated:
‘I would say that after completing a day at work, since I didn’’t observe Ms Forbes at that time, it would be difficult for me to state what her capacity would be at the end of the day’.[97]
[96] Transcript page 83 lines 42-43.
[97] Transcript page 87 lines 44 -46
Ms Murray’s opinion is that Ms Forbes’ functional capacity is limited to the extent that she must choose how she used her limited energy resources.[98] Ms Murray explained:
‘I would say that without assistance from others, it would be difficult for Ms Forbes to maintain independence and a full-time job’.[99]
[98] Transcript page 88 lines 3–33.
[99] Transcript page 88 line 23-25.
Evidence of Ms Kate Green, Occupational Therapist.
Ms Green assessed Ms Forbes’ functional capacity in June 2021, four months prior to her second kidney transplant.[100] Following Ms Forbes’’ second kidney transplant Ms Green conducted a Telehealth assessment in October 2022, and provided a further report dated 7 November 2022.[101]
[100] S1; A2.
[101] Report of Dr Green dated 26 October 2022 as amended 7 November 2022.
In oral evidence Ms Green explained that her assessments were based, for the most part, on self-reporting and that she had ‘focused on the accumulation of tasks and the associated fatigue and impact on functional impairment when tasks are completed in succession’.[102] In providing her opinion, Ms Green confirmed that she considered Ms Forbes’ self-reporting was truthful and accurate.[103]
[102] Transcript (day 3) page 10 lines 12-14.
[103] Transcript (day 3) page 10 lines 20-21.
Ms Green’s opinion is that Ms Forbes’ functional capacity needs to be considered ‘holistically’, so as to incorporate elements such as her fatigue. Ms Green made the following point in her evidence:
‘I think what - from my understanding with Ms Forbes that it’s the accumulation of tasks that causes fatigue. So, I’m of the opinion that going and observing Ms Forbes, you know, carry a load of shopping up her stairs, or prepare like a light meal for herself, I - I don’t feel there’s too much value in doing functional assessments like that in isolation because I don’t think that truly represents the difficulty that Ms Forbes is having, but, yes, I could have observed a functional task.‘[104]
[104] Transcript (day 3) page 22 lines 4-10.
Ms Green referred to the common process of ‘pacing and prioritising‘ tasks, used by persons with chronic fatigue as a coping mechanism and a means of conserving energy. She stated that following the second kidney transplant, despite having a greater capacity to complete tasks in isolation Ms Forbes continued to experience difficulties due to fatigue and tiredness as a result of ‘the accumulation of tasks’.[105]
[105] Transcript (day 3) page 12 lines 31-32; Report of Ms Green dated 26 October 2022 as amended 7 November 2022.
Ms Green referred to the following ongoing symptoms experienced by Ms Forbes:
·Fatigue and weakness.
·Decreased mental sharpness/brain fog.
·Shortness of breath.
·High blood pressure.
Ms Green also identified the following on going issues and difficulties despite having had a second kidney transplant:
·Breathlessness and fatigue when completing tasks ‘in succession’.
·The necessity to rest in between tasks, so as to conserve energy and manage her symptoms.
·The ongoing requirement to manage her diet carefully with fresh foods and foods that contain low levels of phosphate, potassium and sodium.
·Difficulty washing her hair due to low energy levels, resulting in her using dry shampoo as much as possible.
·Showering with increased time and effort, and usually sitting on the base of the shower to conserve energy and manage fatigue.
·Mobilising for long distances and being limited to 30 minutes before needing to rest.
·Completing moderate to heavy cleaning tasks such as vacuuming or changing her bed sheets due to fatigue.
·Following a day at work, an inability to complete any further tasks including cleaning and the preparation of meals or cleaning tasks.
·Difficulty dressing, with the loss of balance whilst dressing lower limbs. Ms Forbes manages this difficulty by sitting on the side of her bed to dress.
·The requirement to manage her rubbish by taking small bags of rubbish to the bin each day, as opposed to one large load.
·Requiring assistance with meals from her mother. On occasions when Ms Forbes is required to provide a meal for herself she relies on simple foods such as an egg on toast, a coffee, a pre-made salad, a sandwich or takeaway foods.
·Breathlessness and nausea when cooking, particularly if required to stand for large periods.
·Difficulty with laundry tasks. Ms Forbes often does not feel well enough to load clothing into the washing machine and the dryer. Often washing will sit on a drying rack for days.
·Difficultly carrying heavy shopping items, managed by purchasing fewer items, making numerous trips to the shops and doing so on numerous days.
·Whilst her capacity to participate in the community has increased, it is still limited to 2-3 hours outside of her home before the onset of fatigue.
·Following the completion of a workday, Ms Forbes struggles to complete self-care routines including feeding herself and has no energy to socialise.
·On weekends Ms Forbes will generally rest watching TV, go for a short work or catch up with a friend for coffee or a meal.
·Difficulty maintaining friendships. Ms Forbes is hesitant to arrange social outings because she is unsure she will feel well enough to commit on the day.[106]
[106] Report of Ms Green dated 26 October 2022 as amended 7 November 2022.
Section 24: The Disability Requirements.
Subsections 24(1)(a) and 24(1(b)
The evidence that Ms Forbes’ has ESKD, a permanent condition for which there is no cure is overwhelming.[107] The Agency accepts that Ms Forbes has a physical impairment which is medullary cystic kidney disease, in end-stage renal failure.[108] The Agency also accepts that Ms Forbes’ ESKD is permanent.[109]
[107] A1; A2; A5.
[108] Subsection 24(1)(a) NDIS Act; T2, Respondent’s Closing Submissions dated 7 March 2023 at [4].
[109] Subsection 24(1)(b) NDIS Act.
Subsections 24(1)(a) and 24(1)(b) are satisfied.
Subsection 24(1)(d): Does Ms Forbes’ impairment or impairment affect her capacity for social or economic participation.
I am satisfied that Ms Forbes’ evidence in relation to the impact of ESKD on her ability to work was truthful and persuasive. Her commitment to maintain full-time employment and ensure her own financial independence, despite significant symptoms and complex treatments[110] over many years is admirable and impressive.[111]
[110] In the form of both peritioneal dialysis and a second kidney transplant.
[111] Section 3 NDIS Act.
The Agency accepts that Ms Forbes’ condition causes her difficulties which include fatigue, nausea and dizziness and affects her capacity for social and economic participation.[112]
[112] Section 24(1)(d) NDIS Act; Respondent’s Closing Submissions [4]; R2 [12].
Subsection 24(1)(d) is satisfied.
Subsection 24(1)(c): Does Ms Forbes’ impairment or impairments result in a substantially reduced functional capacity for her communication, social interaction, learning, mobility, self-care or self- management?
Whether Ms Forbes’ impairments substantially reduce her functional capacity for communication, social interaction, learning, mobility, self-care or self-management is to be considered having regard to section 5.8 of the National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (the ‘NDIS Rules’). The relevant NDIS Rule provides as follows:
When does an impairment result in substantially reduced functional capacity to undertake relevant activities?
5.8 An impairment results in substantially reduced functional capacity of a person to undertake one or more of the relevant activities—communication, social interaction, learning, mobility, self-care, self-management (see paragraph 5.1(c))—if its result is that:
(a) the person is unable to participate effectively or completely in the activity, or to perform tasks or actions required to undertake or participate effectively or completely in the activity, without assistive technology, equipment (other than commonly used items such as glasses) or home modifications; or
(b) the person usually requires assistance (including physical assistance, guidance, supervision or prompting) from other people to participate in the activity or to perform tasks or actions required to undertake or participate in the activity; or
(c) the person is unable to participate in the activity or to perform tasks or actions required to undertake or participate in the activity, even with assistive technology, equipment, home modifications or assistance from another person (Tribunal emphasis added).
At the time of the decision under review Ms Forbes was receiving PD and utilising Continuous Ambulatory Peritoneal Dialysis (‘CAPD’) for her ESKD.
CAPD treatment required that Ms Forbes be connected to a dialysis machine for 8- 9 hours each night. I am satisfied that a dialysis machine providing CAPD is a form of ‘equipment’ contemplated by the operation of Rule 5.8(a) of the Access Rules. Without the benefit of a dialysis machine Ms Forbes’ health would have declined rapidly and immediately. The consequences for Ms Forbes would have been her inability to participate effectively or completely in activities including self-care, self-management, mobility and social interaction.
On this basis I am satisfied that the time of her application to the Agency, when Ms Forbes was reliant on a dialysis machine, she did meet the requirements of Rule 5.8(a) of the Access Rules and thereby did satisfy subsection 24(1)(c) of the Act. In this regard my considerations are as follows:
·The number of items of assistive technology and equipment that are used by people with a disability is an ‘exhaustive list’. This includes those items that enable them to perform the activities referred to in Rule 5.8(b) of the NDIS rules.
·I note that neither ‘assistive technology’ nor ‘equipment’ are defined in the Access Rules or the NDIS Act.[113]
·The only references to assistive technology and equipment are those contained in the Agency’s Assistive technology operational guidelines (the ‘AT guidelines’).[114] The AT guidelines are issued to identify and select, from this ‘exhaustive list’, which items of assistive technology or equipment that will, and will not, be funded be funded under the scheme. An example being the reference in the AT guidelines that ‘items for treatment or rehabilitation’ are not included as a support which is funded under the scheme.
·CAPD utilising a dialysis machine is in fact ‘life support’ for Ms Forbes.[115]
·A dialysis machine should be included in the exhaustive list of equipment used by persons affected by a disability such as Ms Forbes.
·In the absence of CAPD utlising a dialysis machine, Ms Forbes’ health is significantly and profoundly affected. Her ability to participate effectively or completely in activities such as self-care, self-management, social interaction and mobility is substantially reduced to the extent of her eventual and inevitable mortality.
[115] A1.
Ms Forbes’ situation has however, changed. Since the decision under review, she has received a second kidney transplant and is longer dependent on a dialysis machine.
Having regard to the operation of subsection 24(2) of the Act I do not, however, consider it correct to simply proceed on an assessment of Ms Forbes’ functional capacity solely on the basis that her KRT is now provided through a kidney transplant.
Subsection 24(2) of the NDIS Act provides as follows:
‘For the purposes of subsection (1), an impairment or impairments that vary in intensity may be permanent, and the person is likely to require support under the National Disability Insurance Scheme for the person's lifetime, despite the variation’.
I am satisfied that Ms Forbes’ impairments are permanent and vary in their intensity depending upon which form of KRT she receives. In this regard I have considered the following:
·Ms Forbes has a physical impairment as a consequence of her ESKD.
·ESKD is a permanent condition for which there is no cure.
·There are two treatments for Ms Forbes’ ESKD, either a kidney transplant or CAPD. Both treatments have significant challenges and consequences.
·It is not possible to predict the longevity of either treatment.
·Ms Forbes’ second kidney transplant will not last for her lifetime. It could last as long as 25 years or as little as three months.
·The failure of Ms Forbes’ second kidney transplant will mean that she will have to resume CAPD.
·CAPD is a treatment also with a limited life span.
·Over time, due to the build-up of antibodies within Ms Forbes’ body, the success of a third kidney transplant reduces.
·ESKD of itself results in uremic symptoms which include fatigue, nausea, lethargy, tiredness, anorexia and dizziness. These symptoms vary in their intensity depending on which form of KRT she is receiving.
·Whilst the symptoms cause by uremia are generally less intense with a kidney transplant, as her second kidney inevitably transplant fails, so too will these symptoms increase in their intensity.
·Ms Forbes’ current kidney transplant could fail at any time and she will be required to re-commence PD as a form of KRT to avoid death.
Given Ms Forbes’ impairments vary in intensity as is contemplated by subsection 24(2). I therefore consider that the correct approach is to consider, as relevant, Ms Forbes’ functional capacity in the context of both forms of KRT.
Having determined that Ms Forbes satisfied subsection 24(1(c) at the time she was receiving KRT with CAPD, determination of her functional capacity following her second kidney transplant is the next task for consideration.
The assessment of Ms Forbes functional capacity in the context of her kidney transplant requires consideration of both Rules 5.8 (b) and (c) and the general statutory task prescribed under subsection 24(1)(c).
The fact that Ms Forbes does not satisfy the requirements of Rule 5.8 does not, disqualify her from satisfying of subsection 24(1)(c)[116] This is because the measure of whether Ms Forbes has a substantially reduced functional capacity for one, or a number of activities in subsection 24(1)(c) is not exhaustively defined by r 5.8. In Mulligan Mortimer J held;
‘As a deeming provision, r 5.8 has the effect of mandatorily including some people in the category of persons with substantially reduced functional capacity if the criteria in r 5.8(a), (b) or (c) are met. In that sense, a decision-maker must turn his or her mind to whether an applicant falls within the deeming effect of r 5.8. That is not necessarily the end of the exercise in terms of s 24(1)(c). The statutory task remains to consider whether a person’s functional capacity is substantially reduced in any of the six specified areas’.[117]
[117] Mulligan v NDIA [2015] FCA 544; (2015) 233 FCR 201 at [77]; [2023] FCAFC 11at [19].
Assessment of functional capacity following the second kidney transplant
In Mulligan in respect to the operation of subsection 24(1)(c) Mortimer J stated:
‘The legislative scheme contemplates a relatively high degree of precision by decision-makers (see, for example, the six activities in s 24(1)(c)) in assessing what a person can or cannot do. The assessment to be undertaken is avowedly functional, and multi-faceted.’[118]
Further that:
‘...No decision-maker need be satisfied a person’s impairment is “serious”, or more serious than another person’s. No qualitative judgments in that sense are called for. Rather, the legislative scheme is based on a functional, practical assessment of what a person can and cannot do.’[119]
[118] [2015] FCA 544 at [55].
[119] Ibid at [56].
More recently in Foster the Full Court considered the interpretation of subsection 24(1)(c) and made the following observation;
‘In the context of all the matters that comprise the concept of self-care, a decision-maker is required to make a functional, practical assessment of what a person can and cannot do’.
‘Rather than using the assessment tool, being the Guidelines, to reach a conclusion as to whether or not Mr Foster had substantially reduced functional capacity to undertake self-care by assessing his functional capacity with respect to the bundle of tasks and actions forming the concept of ‘self-care’, the Tribunal applied the Guidelines in such a way as to equate Mr Foster’s impairment with the single task of toileting and deemed that to be the relevant activity for which functional capacity was required to be assessed. That was an error.[120]
[120] National Disability Insurance Agency v Foster [2023] FCAFC 11 at [64] and [65]
For the purposes of subsection 24(1)(c) Ms Forbes does not contend that she has a substantially reduced capacity in relation to communication[121] or learning.[122] Accordingly, Ms Forbes must establish that she has a substantially reduced functionally capacity in relation to either her mobility, self-care self- management or social interaction in order to satisfy subsection 24(1)(c).[123] This requires that the Tribunal, undertake a with a high degree of precision, a functional, practical assessment of what Ms Forbes can and cannot do with respect to these activities. This assessment also requires consideration or more than just a single task of each or any of the activities provided for in subsection 24(1)(c).[124]
Subsection 24(1)(c)(ii): Does Ms Forbes’ impairment or impairment result in a substantially reduced functional capacity for her to undertake social interaction.
[121] Transcript page 53 lines 14-15.
[122] Transcript page 53 line 17.
[123] Transcript page 2 lines 32-43.
[124] [2023] FCAFC 11 at [65].
The Agency’s position
The Agency submits that subsection 24(1)(c)(ii) is not satisfied.
Reference is made to Ms Forbes’ capacity to interact with people, and to form and maintain friendships. Ms Forbes interacts with colleagues and strangers through her work,[125] has close friends with whom she can engage with in social interactions on the weekend[126] and it is only the duration and frequency of her social interactions that are affected due to fatigue. The Agency also contends that Ms Forbes’ fatigue has reduced to some extent since her second kidney transplant, and as such she is now able to engage in social interactions with reasonable regularity.
[125] Transcript pages 26-27.
[126] Report of Dr Green 7 November 2023.
In relation to the issue of being immunosuppressed, the Agency contends that Ms Forbes has not identified any impairment arising from being immunosuppressed. Further, that being more susceptible to illness is not itself a disability within the meaning of subsection 24(1)(a).
A further contention is that even if being more susceptible to illness is a disability within the meaning of subsection 24(1)(a) any impairment that arises has not substantially reduced Ms Forbes capacity for social interaction. Rather, it changes the type of social interaction in which Ms Forbes can engage.
Ms Forbes‘’position.
Ms Forbes submits that subsection 24(1)(c)(ii) is satisfied. As a consequence of ESKD she contends she has extremely low energy levels which are rapidly depleted each day. In the context of having limited and finite energy levels and debilitating symptoms, Ms Forbes must choose, each day of her life, how she will utilise her limited energy resources. The requirement to choose involves a process of prioritising certain activities and forfeiting or limiting other activities.
Ms Forbes’ first priority is the management and treatment of her ESKD. Thereafter, Ms Forbes prioritises working full-time for two reasons, firstly financial necessity and secondly to maintain her independence.
Both forms of KRT are challenging and time-consuming in different ways. Ms Forbes’ second kidney transplant is not expected to last her lifetime. In the event of a third transplant, monitoring in the first three months is ‘extreme’ and will have an ongoing impact on her social interaction including the emotional distress of feeling guilty about benefitting from a donor’s death.[127]
[127] Applicant’s Closing Submissions dated 3 May 2023 page 7.
As a consequence of her ESKD Ms Forbes experiences debilitating ‘symptoms’ which vary from day-to-day. These symptoms also vary in their intensity depending on her state of health, adjustments to medication, side effects and compatibility with medications and the type of KRT she is receiving.
Ms Forbes’ position is that the effort and energy required to manage the treatment of her ESKD (whether by kidney transplant or CAPD), together with the effort of working full-time leaves her little energy for other activities. One such activity is her ability for social interaction. She thus contends she has a substantially reduced functional capacity for social interaction.
Considerations
The question of what is meant by ‘effectively and completely’ as appearing in Rule 5.8(a) of the Access Rules was addressed in Foster. Justice Derrington provided the following observation:
[83] In the overall legislative scheme, the adverb “completely” appears to be redundant, and in any event, unachievable. If “completely” is to be given its ordinary meaning, what is being asked of the rule is an assessment of whether a person’s impairment results in substantially reduced functional capacity to participate “wholly” or “perfectly” in the activities of communication, social interaction, learning, mobility, self-care and self-management – an impossible bar for almost everyone.
...
[88] Within this statutory context, and having regard to the purpose of s 24 as described in the revised Explanatory Memorandum, a person will not necessarily be deemed to have substantially reduced functional capacity simply because one task is unable to be completed without assistive technology. The task remains to assess the degree to which the person can participate in the activity.
The Tribunal is therefore required to make an assessment ‘as a whole’ of the degree to which Ms Forbes can participate in the activity of social interaction.[128]
[128] [2023] FCAFC 11 at [85].
The Access Guidelines, whilst not prescriptive, provide guidance in relation to the question of whether the criterion under subsection 24(1)(c)(ii) of the NDIS Act has been met by Ms Forbes in relation to the activity social interaction. The Access Guidelines provide as follows:
Does your impairment substantially reduce your functional capacity?
Your permanent impairment needs to substantially reduce your functional capacity or ability to undertake activities in one of the following areas:
…………………………………………………………………….
Socialising – how you make and keep friends, or interact with the community, or how a young child plays with other children. We also look at your behaviour, and how you cope with feelings and emotions in social situations.
……………………………….
We consider how you’re involved in different areas of life like home, school, work and the community, and how you carry out tasks and actions. We also consider any other factors that may impact your day-to-day life.
Your needs might go up and down each day or each month. Progressive Multiple Sclerosis (MS) can be a good example of this. We consider your ability over time, taking into account your ups and downs.
Having considered the evidence of Ms Forbes and SF and the medical and clinical evidence, I am satisfied that Ms Forbes has a substantially reduced functional capacity to undertake social interaction. My considerations are as follows:
·Ms Forbes’ ESKD causes her to experience uremic symptoms which are debilitating and result in extreme fatigue, lethargy and nausea and anorexia.
·Dr Cai’s evidence is that whilst uremic symptoms can be expected to subside with a kidney transplant, they can continue. This is particularly so when a transplanted kidney starts to fail. Ms Forbes’ kidney transplant could fail at any time and is not expected to last her lifespan. I also note that Dr Cai has not been involved in Ms Forbes’ care or treatment since her second kidney transplant and is not in a position to comment on any symptoms experienced by Ms Forbes since her second transplant.
·Ms Forbes concedes that her level of fatigue has reduced somewhat with her second kidney transplant. I accept however, that her symptoms persist, and that she continues with a significant level of fatigue and reduction in her energy levels despite a second kidney transplant. In this regard I am satisfied that Ms Forbes’ evidence was honest, truthful and without exaggeration.
·I am therefore satisfied that Ms Forbes continues with uremic symptoms despite having had a second kidney transplant. I am also satisfied that Ms Forbes’ uremic symptoms of fatigue, lethargy, nausea and dizziness result in her having extremely limited energy, which she must carefully allocate each day.
·Ms Forbes is an intelligent woman. She makes every effort, on a daily basis to manage carefully her ESKD within the confines of significant fatigue, lethargy and limited energy. This involves the utilisation of compensatory strategies. It also involves, by necessity, the making of choices in respect of what activities that she can and cannot do.
·Understandably Ms Forbes prioritises the management of her ESKD. If she does not, she will die. Management of Ms Forbes’ ESKD through both forms of KRT is time consuming and both physically and emotionally demanding.
·Whilst a kidney transplant is less time-consuming than CAPD, there are other demands in relation to this form of KRT. These include regular medical reviews and monitoring of blood, urine and blood pressure, scans and biopsies to check the function of the transplanted kidney.[129]
[129] Transcript page 39 line 43-47.
·Ms Forbes chooses also, as a priority, working on a full-time basis. Working is a financial necessity for Ms Forbes, and also extremely important to her independence, dignity and self-worth. This is an admirable attitude and having regard to the principles of subsection 4(2) of the NDIS Act ought to be respected and encouraged.
·Managing her ESKD and associated treatment, combined with full-time work leaves Ms Forbes with a small and finite amount of residual energy.
·Ms Forbes chooses to use her remaining energy towards her self-care, in particular her diet and nutrition. This is an obvious choice. Ms Forbes diet and nutrition are fundamental to her well-being and will hopefully extend her life. Her failure to prioritise her diet and nutrition will lead to serious consequences.
·The same consequences to her physical health do not arise with the compromise and forfeiture of social interaction.
·I am satisfied that Ms Forbes compromises her level of social interaction to accommodate and anticipate her severe fatigue so that she is able to have sufficient energy to manage her treatment needs and regime and also maintain her employment and financial independence.[130]
[130] Applicant’s Closing Submissions at [20].
·Having been satisfied that social interaction as an activity receives an extremely low priority for Ms Forbes, the issue still remains as to whether Ms Forbes’ functional capacity to undertake social interaction is in fact ‘substantially reduced’.
·Ms Forbes maintains that her social interaction is substantially reduced and she refers to the following:
oHer limited walking endurance. When accessing the community for exercise Ms Forbes must rest after 30 minutes. This impacts on the activities she can undertake and she must ensure she is always in a position to rest within 30 minutes.
oOn weekdays, after completing a day at work and her self-cares including a meal, Ms Forbes has no energy for any social interaction whatsoever.
oFollowing her second kidney transplant, and only on the weekends, Ms Forbes is able to visit a friend for a coffee or lunch. This activity however is limited to two to three hours.[131]
oDue to the unpredictable and variable nature of her symptoms, Ms Forbes has a reluctance to make social plans for fear of having to cancel plans because she is unwell.[132]
oMs Forbes states ‘…the difficulty that I face informing new relationships has mostly to do with my amount of available energy’.[133]
oMs Forbes has had to make extreme changes in respect of time spent with friends in order to manage her treatment and be in a position to continue working and thereby maintain her financial independence.[134]
oMs Forbes must carefully consider her access to the community. She is vulnerable to communicable diseases and quite properly does not wish to risk infection. She does not access places such as a gym, a shopping mall or events with crowds.[135]
oWhilst Ms Forbes’ mother stays with her on the weekends to assist with tasks including laundry cleaning and meals, Ms Forbes states ‘but we’re not going out shopping and seeing a picture or going to a theatre’.[136]
oMs Forbes concedes her mother’s visits provide a type of social interaction, but for the purposes of her application and her submission in relation to subsection 24(1)(c)(ii) she states ‘on the basis of my application, my reference to social interaction, I guess, had more with the community and my friends, which I don’t – I find very difficult’.[137]
oAside from her mother Ms Forbes has two other people in her ‘friendship circle’. M who speaks to generally once a week and S who she speaks to generally twice a year.[138] These friends are aware of her illness. Ms Forbes finds spending time with friends as incredibly difficulty because a lot of the time she does not have the energy to do so.[139]
[131] Report of Dr Green 7 November 2023.
[132] Transcript page 84 lines 4-47
[133] Transcript page 52 line 16-17.
[134] Transcript page 20 lines 40-45.
[135] A6.
[136] Transcript page 19 line 23-26.
[137] Transcript page 19 lines 39-41.
[138] Transcript page 51 lines 10-22.
[139] Transcript page 19 lines 45-47.
Having considered what Ms Forbes can do and what she cannot do I am satisfied that her ability to interact socially is substantially reduced. The Agency refers to ways Ms Forbes can interact socially which Ms Forbes does not dispute. This includes Ms Forbes attending work and interacting with work colleagues and strangers. Also, the fact that Ms Forbes has close friends that she can socialise with on the weekend.[140] Ms Murray’s evidence is that Ms Forbes interacts in a friendly and approachable manner that would enable her to make and form friendships.[141] Notwithstanding, Ms Forbes’ level of social interaction, as a 45-year-old woman, is in my view, significantly and substantially restricted as a consequence of her impairments. As a further consideration Ms Forbes raises that she lives alone, has no intimate relationship, no children and no pets. This in my opinion amplifies the gravity of the effect of her already substantially reduced ability to interact socially.
[140] Respondent’s Closing Submissions at [27].
[141] R1, page 23.
Subsection 24(1)(c)(ii) is satisfied.
Having determined that subsection 24(1)(c)(ii) is satisfied, I am not required to consider Ms Forbes’ functionally capacity in relation to her mobility, self-care or self-management.
Subsection 24(1)(e): Is Ms Forbes’ likely to require support under the National Disability Insurance Scheme for her lifetime.
The correct approach in relation to whether Ms Forbes is likely to require support under the National Disability Insurance Scheme for her lifetime was recently considered in Foster with the following observation:
‘The focus of s24(1)(e) is on whether a prospective participant is likely to require support under the NDIS, or whether those support needs are most appropriately met by other systems’.[142]
[142] [2023] FCAFC 11 at [93].
Ms Forbes seeks supports in her home with tasks such as cleaning and laundry. She also seeks assistance with the provision of meals.
Ms Green’s opinion is that Ms Forbes should receive 12 hours per fortnight of supports with domestic tasks, cooking support and community access.
Ms Murray’s opinion is that Ms Forbes requires weekly assistance to prepare meals so that she can maintain a healthy diet and conserve energy. Also, that Ms Forbes requires a weekly cleaning/laundry service to take over for these services that are currently provided by her 70-year-old mother. In her evidence Ms Murray states:
'There are other services that could be explored, such as contacting your local council and also accessing equipment that could support you to conserve your energy throughout your day when you’re working from home. Also working from home could be an option that could be explored. I know that’s probably not something that you would like to do every day, but incorporating strategies into your life where we can reduce that, both cognitive load and physical load on your body could be explored, which I don’t believe they've been explored as yet’.’[143]
[143] Transcript page 85 lines 32-39.
Based on this evidence I accept that Ms Forbes requires the supports sought and that they would benefit her greatly.
The Agency refers to the Victorian Home and Community Care Program (the ‘VHACC program’).[144] The VHACC program is a home and community care program jointly funded by the Commonwealth and Victorian Governments. It provides a range of services which include ‘domestic assistance’, ‘delivered meals and centre-based meals’ and ‘personal care’ for ‘younger people with moderate, severe or profound disabilities…’.
[144] T2; S7.
Relevantly the VHACC program manual provides as follows:
‘In Victoria, approximately 460 organisations deliver HACC services to the community through local councils, hospitals, community health services, nursing services, Aboriginal community-controlled organisations, ethno-specific and multicultural organisations and a range of other non-government community organisations.
Local councils play a strong role in the provision of HACC services. This is unique to Victoria. Victorian councils have a long history and commitment to their communities to provide integrated community care services. According to the Municipal Association of Victoria (MAV), Victoria councils contribute over $100 million annually to ‘value-add’ to the HACC program.
The local council contribution assists the HACC program to meet both the increasing demand for services and to promote positive ageing strategies within local communities that keep people active and healthier for longer’.[145]
[145] T2; S7 page 75.
The evidence supports a finding that the supports Ms Forbes seeks are appropriately provided under the VHACC program.
Ms Forbes concedes that she has never sought to access the services of the VHACC program.[146] Rather, she relies on correspondence provided by a friend, Mr Shane Wilmann.[147] Mr Wilmann’s correspondence refers to the level of services provided by the Council, presumedly under the VHACC program to Mr Wilmann’s now deceased wife. Ms Forbes also relies on several newspaper articles titled ‘More Councils Ditch – home help’ and ‘Help four million not in NDIS, says Dylan Alcott’ respectively.[148]
[146] Transcript page 55 line 18.
[147] A7, document 4.
[148] A7, documents 5 and 6
This evidence does not assist the Tribunal, nor advance Ms Forbes’ position.
In the absence of any application by Ms Forbes to the VHACC and a subsequent refusal (including explanatory reasons) I am not satisfied that these supports are not more appropriately provided through the VHACC program. I therefore accept the submission of the Agency that the supports sought by Ms Forbes are more appropriately provided through another service system.
Subsection 24(1)(e) is not satisfied.
Section 25 – The Early Intervention Requirements
Ms Forbes’ position is that ‘formal support and a proactive approach’ to the treatment of her ESKD is crucial. She contends that if she has access to appropriate formal supports, her capacity to manage her ESKD and its complications will improve to achieve best possible outcomes. In this regard she again refers to complications which include anaemia, bone disease and cardiovascular disease.[149]
[149] Applicant’s Closing Submissions.
Currently Ms Forbes receives ‘informal supports’ which are provided by her 70-year-old mother SF. SF’s capacity to provide informal supports declines with her age and results in significant caregiver burden. Ms Forbes contends that ‘formal supports’ will alleviate the caregiver burden on SF and have a positive effect on the relationship between SF and Ms Forbes.
Ms Forbes’ submission identifies ‘formal supports’ as the ‘early intervention supports’ which she seeks and are ‘likely to benefit‘ her for the purposes of subsection 25(1)(b) and in the ways provided for in subsection 25(1)(c). As already identified by Ms Forbes these formal supports relate to the assistance with meals and maintaining her home.
Notwithstanding, section 25(3) of the NDIS Act provides as follows:
Despite subsections (1) and (2), the person does not meet the early intervention requirements if the CEO is satisfied that early intervention support for the person is not most appropriately funded or provided through the National Disability Insurance Scheme, and is more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or through systems of service delivery or support services offered:
(a) as part of a universal service obligation; or
(b) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
Having already determined that the supports sought by Ms Forbes are more appropriately funded and provided through the VHACC program Ms Forbes by virtue of the operation of subsection 25(3) of the Act[150] fails to satisfy the early interventions requirements.
[150] See also Rule 6.1 NDIS Rules
The Tribunal affirms the decision under review pursuant to subsection 43(1)(a) of the Administrative Appeals Tribunal Act 1975 (Cth).
I certify that the preceding 132 (one hundred and thirty-two) paragraphs are a true copy of the reasons for the decision herein of Senior Member J Collins
……………………[SGD].…………………..
7 August 2023
Associate
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