Kelly and National Disability Insurance Agency
[2022] AATA 3786
•10 November 2022
Kelly and National Disability Insurance Agency [2022] AATA 3786 (10 November 2022)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number: 2022/1337
Re:Cassandra Kelly
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
Decision
Tribunal:Senior Member P Goward
Date:10 November 2022
Place:Sydney
The Tribunal affirms the decision under review.
.....................................[sgd]...................................
Senior Member P Goward
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME — reasonable and necessary support — Operational Guidelines — home modifications — installation of a water filtration system — Down’s syndrome — Immunocompromise — water quality — preventive support — decision affirmed.
LEGISLATION
Administrative Appeals Tribunal Act 1975 (Cth)
National Disability Insurance Scheme Act 2013 (Cth)National Disability Insurance Scheme (Supports for Participants) Rules 2013
CASES
McGarrigle v National Disability Insurance Agency [2017] FCA 308
McKenzie and National Disability Insurance Agency [2019] AATA 3275 (5 September 2019)JTMJ v Australian Securities and Investments Commission [2010] AATA 350
SECONDARY MATERIALS
Explanatory Statement issued by the Authority of the Minister for Families, Community Services and Indigenous Affairs and Minister for Disability Reform
Rules for Participants 2013Operational Guidelines of the National Disability Insurance Agency
REASONS FOR DECISION
Senior Member P Goward
10 November 2022
INTRODUCTION
The Applicant, Ms Cassandra Kelly, is a 27-year-old woman living with Down’s syndrome.
The Applicant became a participant of the National Disability Insurance Scheme (the NDIS) on 31 August 2016.
The matter under review relates to the Applicant’s NDIS plan for the period between 28 September 2021 to 28 September 2022.
The Applicant’s mother Mrs Fiona Kelly, the Applicant’s plan nominee and primary carer, applied for review of the Agency’s decision dated 19 January 2022 which itself confirmed the original decision to approve the Applicant’s 12 month NDIS plan dated 28 September 2021.
The Applicant seeks an additional support in the form of a ‘Puretec Hybrid-G7’ filtration system with ultraviolet light and weather cover (‘Water Filtration Unit’).
The Tribunal has jurisdiction to review the decision pursuant to section 103 of the National Disability Insurance Scheme Act 2013 (Cth) (‘the Act’).
The matter was heard before the Tribunal by videoconference on 23 September 2022. The Applicant’s father Mr Rodney Kelly appeared as the Applicant’s non-legal representative while the Applicant’s mother appeared before the Tribunal as a witness.
ISSUE
The Tribunal must determine whether the disputed support, namely the water filtration unit requested by the Applicant, is reasonable and necessary in accordance with the criteria provided for by section 34(1) of the Act and the relevant rules and guidelines.
The issues are narrowed down to:
(i)whether the Applicant’s Down’s syndrome gives rise to an elevated risk of infection, particularly from waterborne pathogens;
(ii)whether the water quality of the rainwater tank is likely to give rise to an elevated risk of infection and harm, or otherwise, by reference to the Down’s syndrome.
The Agency maintains that the evidence as it stands is insufficient on both grounds (a) and (b). The Tribunal concurs with this view and for the reasons which are set out below, the decision under review is affirmed by the Tribunal pursuant to s 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth).
BACKGROUND
The Applicant has been living with her parents in a property without reticulated water since October 2020.
The Applicant’s parents were concerned that the tank water at the property would not be to a safe standard for their daughter and sought the additional support of a water filtration unit which is the subject of this review.
The Applicant did not take issue with the NDIA’s decision to approve her 12-month NDIS plan but sought the additional support of a recumbent bike and the Water Filtration Unit.
The NDIA’s internal review decision, pursuant to section 100 of the Act dated 19 January 2022, provided the following reason for not reviewing (and therefore not approving) the relevant supports:
I have determined these supports are not reviewable because an original decision has not been made as part of the statement of supports under review. As a result, I have not considered this aspect of the request as part of the s100 internal review as it relates to assessments and quotes you have submitted in regards to plan review request. I have referred this request to the appropriate team to be assessed in the first instance by a planner to make an original decision.
The Applicant’s total funded supports would amount to $61,526.55.
On 15 February 2022, the Applicant applied to the Tribunal for a review of the internal review decision. The recumbent bike was no longer to be part of this review.
LEGISLATIVE FRAMEWORK & POLICY
The objects and principles of the Act are set out in Part 2 of the Act. Relevantly, at s 3(1) (d), the objects include the provision of reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme.
The objects and principles also include s 3(1)(g) of the Act; the promotion of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the mainstream community. This is reiterated in the functions of the NDIA.
Section 4 of the Act sets out the General Principles guiding actions under the Act, including Principle (5), that people with disability should be supported to receive reasonable and necessary supports, including early intervention supports.
Section 33 of the Act deals with what must be in a participant’s plan. Sub-paragraph 33(2)(b) specifically provides that:
A participant's plan must include a statement (the statement of participant supports), prepared with the participant and approved by the CEO, that specifies:
(a) …; and
(b) the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme; and
…
Sub-section 33(5) of the Act states that the matters which the CEO must consider in deciding whether to approve the statement of participant supports are, relevantly to:
(a) have regard to the participant’s statement of goals and aspirations; and
(b) have regard to relevant assessments conducted in relation to the participant; and
(c) be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d) apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e) have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f) have regard to the operation and effectiveness of any previous plans of the participant.
Clause (c) of sub-section 33 (5) of the Act, the requirement that supports be reasonable and necessary, is of most relevance in this case.
Subsection 34(1) of the Act then provides, with respect to reasonable and necessary supports, as follows:
(1) For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a) the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
(b) the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
(c) the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d) the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e) the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
(f) the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i) as part of a universal service obligation; or
(ii) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
The Act does not define the phrase ‘reasonable and necessary’. In McGarrigle v National Disability Insurance Agency (McGarrigle),[1] Mortimer J stated as follows:
[91]Whether a support is “reasonable” requires a different assessment to whether a support is “necessary” It is not necessary in the context of this proceeding to be definitive about the nature and extent of the meaning of the phrase, or its components. It is enough to observe that using the concept of necessity would appear to tie one aspect of the CEO’s assessment to an evaluation of the kinds of factors set out in s 34(1)(a) and (b) and (d). The word “reasonable” would appear to be directed at factors such as those set out in s 34(1)(c) and (f). That is not to say the meaning of each word is exhausted by the factors set out in s 34(1): rather, it is to illustrate the different work that each concept does as an adjective in the phrase “reasonable and necessary supports”.
[1] [2017] FCA 308 (28 March 2017).
Further guidance with respect to the funding or provision of reasonable and necessary supports is found in the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (‘the Rules’) (emphasis added) which are made pursuant to subsection 35(1) of the Act. By reference to section 209 of the Act, the Rules are a legislative instrument, thus binding on the Tribunal.
The Rules for the determination of a reasonable and necessary support include, but are not limited to prescribing:
(i)methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding, the reasonable and necessary supports or general supports that will be funded or provided under the National Disability Insurance Scheme; and
(ii)reasonable and necessary supports or general supports that will not be funded or provided under the National Disability Insurance Scheme; and
(iii)reasonable and necessary supports or general supports that will or will not be funded or provided under the National Disability Insurance Scheme for prescribed participants.
The Rules set out the matters the CEO is required to consider when determining if a requested support is reasonable and necessary, in accordance with s 34(1) of the Act, which is outlined under paragraph twenty-six of this decision.
The Tribunal is required to apply the Rules in order to determine whether the provision of the water filtration unit for the Applicant is a reasonable and necessary support.
In Ms Kelly’s application, the Respondent has argued, and this was not disagreed with by her father, who was also the Applicant’s representative at the hearing, that the relevant considerations under s 34 of the Act and the Rules for this decision are 34(1)(c) and 34(1)(d).
I agree with the Respondent’s contention that only the two aforementioned considerations are immediately relevant to this case. Whether the support could reasonably be provided by the family or a carer or other supporter, and whether the support is most appropriately funded by the NDIS, only need to be determined once the support is demonstrated to be value for money, effective, beneficial and current good practice.
Criterion under s 34(1)(c) - Value for money
The Tribunal must be satisfied that the funding of the water filtration unit represents value for money, that is, that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support. In deciding this, the CEO (and the Tribunal, standing in the shoes of the decision maker) is to consider the following matters pursuant to Rule 3.1 of the Rules:
(a) whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b) whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long‑term benefit to, the participant;
(c) whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d) for supports that involve the provision of equipment or modifications:
(i) the comparative cost of purchasing or leasing the equipment or modifications; and
(ii) whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e) whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f) whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
Criterion under s 34(1)(d) - Effective and Beneficial
In deciding whether the requested support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice; the CEO (and thus the Tribunal) is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:[2]
(a) published and refereed literature and any consensus of expert opinion;
(b) the lived experience of the participant or their carers; or
(c) anything the Agency has learnt through delivery of the NDIS.
[2] NDIS Act s 34(1)(d); NDIS (Supports for Participants) Rules, rr 3.2-3.3.
The Rules also allow the CEO, when deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, to take into account, and if necessary seek, expert opinion.
General criteria for supports
In addition to the requirement that a support meet the criteria outlined in s 34(1), Rule 5.1 stipulates that a support will not be (italics added) provided or funded under the NDIS if:
(a) it is likely to cause harm to the participant or pose a risk to others; or
(b) it is not related to the participant’s disability; or
(c) it duplicates other supports delivered under alternative funding through the NDIS; or
(d) it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.
The day-to-day living costs referred to in Rule 5.2 do not include the following
(a)additional living costs that are incurred by a participant solely and directly as a result of their disability support needs;
(b)costs that are ancillary to another support that is funded or provided under the participant’s plan, and which the participant would not otherwise incur.
These may be funded under the NDIS if they also relate to reasonable and necessary supports.
There are also Operational Guidelines which may be considered. As noted in the matter of McKenzie and National Disability Insurance Agency,[3] I am not bound by policy as set out in the Guide. However, it is further noted that:
[13] [I]n Re Drake and Minister for Immigration and Ethnic Affairs (No 2) (Drake No 2)[2], 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.
[14] Therefore unless the Operational Guidelines are inconsistent with the provisions or objects of the legislation, they are relevant to consideration of what is a “reasonable and necessary support”.
[3] [2019] AATA 3275 (5 September 2019).
NDIS Guidelines provide that home modification and assistive technology are recognised as valid supports. A water filter would be classified as assistive technology for the purposes of ensuring the safety of the applicant.[4]
[4] I note Page 2 of the NDIS Our Guidelines, Home Modifications, “We may also fund equipment or assistive technology to make your home safer and more accessible.”)
The NDIS Guidelines also stipulate that any request for a home modification or assistive technology for safety reasons must still meet the required tests for a reasonable and necessary support.
EVIDENCE AND SUBMISSIONS
The Respondent contends that a water filter is not a reasonable and necessary support because the requirements of s 34(1)(c) and 34(1)(d) of the Act have not been met. I will deal with s 34(1)(d) first, the provision that a support be effective and beneficial, as it is the more critical requirement in relation to which further information was provided, followed by s 34(1)(c).
The Applicant’s Contentions
The Applicant’s parents both contended that the tank water on which the family entirely relies is untreated and therefore likely to contain waterborne pathogens which could lead to infection in the Applicant. While this risk of infection would apply to all members of the household, they further contended that her Down’s syndrome causes her to be at greater risk of infection than other people; that is, the untreated water poses a heightened risk to the Applicant as a result of physical malformations associated with Down’s syndrome, rather than her intellectual impairment.
The Applicant’s mother, Mrs Kelly, described her daughter’s health problems, including mitral heart valve problems and the need for cataract surgery at a young age, as evidence that the Applicant was ‘more susceptible to any illness’ as a result of her Down’s syndrome. She considered her daughter was ‘at sufficient risk’ to justify a water filtration system. In her email to the tribunal and to the NDIA dated 20 September 2022, responding to the Respondent’s Statement of Facts, issues and Contentions, Mrs Kelly referenced the importance of preventing illness: ‘[t]he request for a water filtration system is designed to prevent illness and infections (which have been established as a very real risk in our circumstances).’
Further, Mrs Kelly submitted:
it would be reasonable [to] conclude that someone with congenial (sic) heart defects that required repair of atrioventricular canal and atrioventricular valve and that will require further heart surgery as the leaking of the valve increases slowly over time, should be taking preventative measures.
The Applicant’s parents have argued that a water filtration unit would be both effective and beneficial. Effective, because such a system would effectively mitigate the risk of infection from waterborne pathogens and, beneficial, in the sense of preventing infection and maintaining the safety of the Applicant.
Mrs Kelly told the Tribunal in her email of 24 June 2022, ‘[t]he water filtration system is to protect Cassandra from possible infection and the risk of illness as her heart condition is an ongoing issue …’ The Applicant’s parents were emphatic that the water filtration system would be an effective preventive measure and would benefit her safety.
Similarly, Mrs Kelly relies on the advice of her daughter’s GP and OT for evidence of effectiveness and benefit, stating in her application, ‘I obtained advice from both Cassandra’s regular doctor and specialist that the water filtration system was recommended and important for her wellbeing and health due to her ongoing heart condition.’
While it is self-evident that a water filtration system will reduce the risk of infection to any member of the household, the Applicant’s parents also needed to demonstrate that their daughter’s Down’s syndrome puts her at greater risk of infection, and specifically, infection from waterborne pathogens. This is consistent with Rule 5.1(b), that a support will not be funded if it is not related to the Applicant’s disability.
The Applicant’s parents have concluded that the most effective way of mitigating infection risk to their daughter’s health, and of benefit to her safety, is the installation of a water filtration unit. On this basis, they have concluded that this support was reasonable and necessary and should be provided as part of the Applicant’s plan.
Immunocompromise
As evidence of Cassandra’s greater physical vulnerability, Mrs Kelly detailed Cassandra’s heart defect, which she said had required surgery when Cassandra was a baby and will require further surgery. This is not disputed.
A Transesophageal Echocardiography Report verified by Dr Jason Kaplan at Macquarie University Hospital was provided by the Applicant and provides clinical confirmation of the Applicant’s heart condition as moderate to severe mitral valve regurgitation.
Mrs Kelly also claimed that children born with Down’s syndrome are more likely to have congenital heart conditions and provided some published evidence of that, which I accept.
Mrs Kelly also told the hearing that people with Down’s syndrome, like Cassandra, are ‘more prone to any illness, including childhood cancer’. I also accept that there is a greater risk of childhood cancer.
Mrs Kelly did not link Cassandra’s heart defect directly with her greater risk of infection, but considered it was part of Cassandra’s overall greater ‘complexity’. She did not propose that a waterborne pathogen was more likely to infect her daughter’s heart than persons without Down’s syndrome and/or heart valve problems. The treating heart specialist also did not make such a causal link in his report.
Similarly, in Mrs Kelly’s email of 24 June 2022, she said ‘the water filtration system is to protect Cassandra from possible infection and the risk of illness as her heart condition is an ongoing issue that will require further surgery.’ Mrs Kelly told the hearing she believed Cassandra was more at risk of infection, that is, that she was immunocompromised, compared with people without Down’s syndrome. I requested further submissions from both parties on the link between a person with Down’s syndrome and immunodeficiency at the hearing’s conclusion. I will return to this evidence later in my deliberations.
Mrs Kelly referred to the letter from the Applicant’s former general practitioner (GP), Dr Sunniya Zaheer, as expert evidence that Cassandra is immunocompromised. In an email to the Tribunal and to Patricia Lenehan, dated 20 September 2022, Mrs Kelly cited Dr Zaheer’s comment ‘she is more susceptible to pickup (sic) infections’. No further explanation of this statement was provided in that letter, including evidence which might support the claim, such as the Applicant’s history of recent infections treated by the GP.
In the same email of 20 September 2022, Mrs Kelly relayed an observation made by Cassandra’s dentist, Dr. Christina Foong, of Parramatta Pacific Smiles as ‘further support’ of Cassandra’s greater risk of infection. Mrs Kelly reported that ‘Dr Foong pays particular and additional attention to Gum health and supplementary application of tooth fluoride to help avoid any infections that could lead to serious illness for Cassandra’. No report was provided by Dr Foong.
Cassandra is the Kellys’ last child and was born following the tragic death of a brother the year before her birth. Mrs Kelly is concerned that an infection could lead to Cassandra’s premature death. As she said at the hearing: ‘We’ve buried one child and we don’t want to bury another.’
Although evidence was provided about the greater “complexity” of the Applicant’s health, particularly her heart problems and an early need for eye surgery, no explanation or evidence was provided about the kind of infection to which Cassandra might be more prone, or how it might result in complications leading to death.
The Water Supply
Although Cassandra lives with her parents, she has her own semi-independent unit with a kitchen and bathroom, with cameras present so that Cassandra can be monitored.
The Kelly family has been living in the property with only stored tank water to meet their drinking, washing and food preparation needs for the last two years.
Mr Kelly told the hearing that the tanks were manufactured by Pioneer Water Tanks. The water is currently not treated in any way, nor is its quality monitored.
On the question of whether the Applicant had done a water quality test on the tank water, the Applicant’s father responded:
No we’ve actually never done one and I do concede that is a fair question. We’ve never done one. I think the OT suggested we do one after the installation of the water filter. Which again was, I suppose, to be sure that it was doing what it was meant to do.
Following an adjournment, the Applicant’s father stated as follows:
the other point that I understand with water testing, it can be a little hit and miss. In a sense that what might be good last week, may not be good next week … it’s not a definitive thing. And the problem that we have with basically water tanks is that unwanted vermin can get in there and spoil the water for a couple weeks. It is not permanently bad water …
Mr Kelly advised after the adjournment that the Pioneer website reported that water testing was not recommended unless there was a change in taste or smell, and that the tank should be inspected every two to three years for sludge in the bottom of the tank. He advised that the Kellys had not done such an inspection.
Mr Kelly also considered that there was no point in regular monitoring of the water quality ‘because it could change very quickly’ (if an animal drowned in the tank, for example) but by then, Cassandra might already be ill. However, Mr Kelly did not offer further information about any other steps the family had taken to improve the water quality by reducing the risk of pathogens being present in the water.
Mr and Mrs Kelly stressed that the role of the sought-after water filter was to act as a preventive measure and keep Cassandra safe from waterborne pathogens. The Tribunal notes this is consistent with the NDIA’s guidelines that assistive technology can be used to improve the safety of a participant.
The advice of the Kelly’s GP, Dr Zaheer, that a water filter would help protect Cassandra from harm was echoed by the Occupational Therapist (OT), Ms Jessie Stephenson, who referenced the medical letter from the GP of 4 June, 2021. Mrs Kelly also advised that Ms Stephenson’s report was, in addition, based on ‘a lengthy discussion’ with her.
Both Mr and Mrs Kelly are reasonable people who presented to the Tribunal as honest and considered, with genuine concerns for their daughter’s safety.
Although Cassandra can both read and write, her parents were confident that she was not sufficiently able to understand the consequences of drinking water from an untreated source. For this reason, they opposed the installation of water filters for single taps and believed Cassandra’s movements in the house would be less restricted if all water was treated, not just kitchen water for drinking. The Tribunal notes this is consistent with the aims and objectives of the NDIA Act, which seek to promote the independence of NDIS participants.
In the Assistive Technology Assessment provided by the OT, the Applicant is described as ‘immunocompromised and more susceptible to viruses and illness’ as a result of her ‘disability and associated physical health concerns’. Ms Stephenson appears to rely on Dr Zaheer’s letter of 4 June 2021, for this diagnosis.
Ms Stephenson’s assessment concludes:
Cassandra remains at risk of becoming unwell from exposure to the tank water. As noted earlier, due to Cassandra’s disability and related physical health needs, she is immunocompromised and at higher risk if exposed to pathogens in the water.
Her report recommended a water filtration system on the basis that, as she said: ‘Research has shown the water filter to actively destroy pathogens in the water, and therefore reduce risk of illness from exposure to the water’.
In the Assistive Technology Assessment, the possibility of teaching Cassandra to only drink water from taps to which an in-line water filter was attached, such as under-sink filters used in kitchens, was not tested, although Ms Stephenson considered the possibility. Ms Stephenson described the Applicant as having only ‘limited cognitive capacity’ and:
limited ability to solve daily problems, due to her cognitive capacity and memory. For example, if a water filter was installed in Cassandra’s kitchen area directly onto the tap, she is highly likely to forget that she would only be able to drink from this tap, and not the other taps in the remainder of the house.
Further, the Applicant ‘would require constant supervision throughout the day’ if treated water was only available from certain taps.
Mrs Kelly agreed that the therapist had not examined the Applicant’s capacity to follow relevant instructions about drinking water and advised that the Applicant could dress herself but needed help, for example, in setting the temperature of the taps. Arguably, the parents’ understanding of their daughter’s capacities could be accepted as sufficient grounds for agreeing that the Applicant was incapable of learning from which taps to drink, but an OT assessment would have been valuable independent confirmation, or negation, of this belief for the purposes of funding this support.
Mr Kelly agreed during the hearing that there had been no infection suffered by anyone living in the house over the past two years, including the Applicant, that might be attributable to pathogens in the tank water.
The Respondent’s Contentions
The Respondent, accepting the parents’ concern to keep their daughter safe, has not argued that the Applicant should not have the water filter, but that ‘there is insufficient evidence’ to satisfy the requirements under ss 34(1)(d) and s 34(1)(c) of the Act.
For the support to be effective and beneficial, having regard to current good practice, consistent with Rule 3.3, the Respondent contended that the Applicant needed to provide expert witness evidence of the following:
·That the Applicant suffers an elevated risk of infection from waterborne pathogens as a consequence of her Down’s syndrome
·That the tank water is of sufficiently poor quality to compound the risk of infection to the Applicant, thus putting her at risk of serious illness.
Elevated Risk of Infection/Immunocompromise
The Respondent argued during the hearing that any preventive support provided by the water filter ‘required probative evidence’ of the degree of risk in what was, ‘necessarily, a speculative space, since there had been no water quality samples taken and the concept of immunocompromise relied upon ‘could be extrapolated to any sort of infection for people’.
The Respondent addressed the evidence of the two expert witnesses provided by the Applicant; her GP, Dr Sunniya Zaheer, and the OT, Ms Jessie Stephenson.
The Respondent described Dr Zaheer’s evidence as a ‘brief letter’ of one relevant paragraph in a letter written at ‘a high level’, without reference to scientific evidence about the water quality, and with no demonstrated scientific expertise to comment on the link between Down’s syndrome and immunocompromise. The Respondent maintained ‘the doctor’s qualifications were unclear”.
The Respondent considers the most apposite quote from the doctor’s letter, ‘It is advisable for her to use clean water for drinking purposes as she is susceptible to pick up infections’ to be, in the Respondent’s words, ‘stating the obvious’. The Respondent has argued in the Statement of Facts, Issues and Contentions, that Dr Zaheer does not state that the Applicant is more susceptible to picking up infections from waterborne sources than persons without Down’s syndrome and/or heart valve problems.
The Respondent considered that the report of an immunologist, qualified to comment on the relationship between the quality of the tank water and the Applicant’s risk of infection, was required.
I consider the report provided by Dr Zaheer fell well short of the level of detail necessary to sustain the doctor’s opinion that the Applicant was susceptible to picking up infections. Although I agree it could be inferred, obliquely, from that brief phrase, it needed far greater substantiation.
The GP’s report also failed to provide any detail about the Applicant’s alleged susceptibility and link with the Applicant’s Down’s syndrome, which is the basis for her admission to the NDIS. As her local treating doctor, Dr Zaheer could have provided evidence of infections suffered by the Applicant over the course of the last two years; whether the Applicant’s incidence rate was elevated compared to those of people without Down’s syndrome and medical research about the severity and likelihood of infection from waterborne pathogens suffered by people with Down’s syndrome.
Regarding the evidence of Ms Stephenson, the Respondent’s SFIC suggested that her probative evidence was ‘slight’. As an OT, she did not have the qualifications to comment on the Applicant’s cognitive capacity, her propensity to waterborne infections, the tank water quality or the efficacy of the proposed water filter in preventing infections to the Applicant.
In Ms Stephenson’s report, she relies on Dr Zaheer’s report of the Applicant’s susceptibility to infection, rather than any independently gained evidence.
The Respondent submits that Ms Stephenson’s evidence should be given no weight.
Ms Stephenson expresses the opinion that a water filter is required to “protect Cassandra’s physical health and vulnerability, by clearing any pathogens out of the water before water enters the house from the water tank”.12 She also states that “[r]esearch has shown the water filter to actively destroy pathogens in the water, and therefore reduce risk of illness from exposure to the water” and she “expects” the water filter to last for well over 10 years.
Ms Stephenson has strayed well beyond her area of expertise as she is not qualified to express these opinions. The principles developed by the Courts over the years regarding expert evidence remain equally applicable in the context of the Tribunal in determining whether expert evidence is probative, and if so, the weight that it should be given. When the Tribunal decides that the probative value is so slight or non-existent, it will often do so on the basis that the evidence would not be admissible in a Court according to the rules of evidence. In that context rules of evidence generally reflect the views reached by the Courts as to the evidence that can be relied on to have probative value. The Respondent submits that Ms Stephenson’s opinions as to the Applicant’s medical condition and the appropriateness of the Water Filter should be given no weight.
While the rules of evidence do not, in fact, apply equally in Tribunal hearings, it is true to say, as the Respondent has pointed out, that Ms Stephenson’s report consisted of several statements of opinion in areas outside her expertise. Further, with no attempt to substantiate those opinions with factual evidence such as a clinical assessment, other than by reference to Dr Zaheer’s report, or the provision of an engineer’s report. On this basis the Tribunal finds the probative value of Ms Stephenson’s report to be unsatisfactory.
I turn now to the report provided from the Applicant’s treating heart specialist, Dr. Jason Kaplan. While the Report was technically detailed, as the Respondent pointed out, it did not make a link between the Applicant’s Down’s syndrome and her heart condition. No link was made in the report between the heart condition and the Applicant’s level of immunocompromise, or between water quality and the risk it might pose to the Applicant’s heart condition through infection.
During the hearing, the Applicant’s representative and her witness made it clear that their concern for their daughter’s safety was:
more than about heart disease. She is immunocompromised according to the OT and Dr Zaheer believes she is immunocompromised … We think the water quality is a sufficient risk to justify the filter.
During the hearing, the Respondent concluded in the opening statement that ‘the witnesses are independent but no doctor is saying the two are likely to be linked. There is no specialist knowledge provided dealing with the cluster of issues …’
The Applicants have provided several publications to support their contention, and that of the GP, that people with Down’s syndrome are immunocompromised.
The Applicants have listed the following references concerning the immunity enjoyed by people with Down’s syndrome:
·The Guide to Good Health for teens and adults with Down Syndrome, authored by Brian Chicoine, MD and Dennis McGuire, PhD;
·Immune Dysregulation in Down syndrome, authored by Huggard et al;
·Anaesthesia for Children with Down’s syndrome authored by Dr Krishnan Melarkode;
·Down’s syndrome authored by Jules E Allt MBChB FRCA and Charlotte J Howell, MBBChir MA FRCA; and
·Down Syndrome: Clinical features and diagnosis, authored by Kathryn K Ostermaier, MD, FAAP.
I have read the information with great interest. I note there were several references to elevated respiratory/pneumonia infection risks for people with Down’s syndrome, and less information about more general immunocompromise in people with Down’s syndrome. There was no reference to elevated risks from waterborne pathogens. Overall, I am not satisfied, based on the additional information provided, that people with Down’s syndrome are at higher risk of infection from waterborne pathogens than other people.
The Respondent has also made closing submissions on the question of compromised immunity resulting from Down’s syndrome. The Respondent contends, in paragraph 12:
Whilst it is possible that the Applicant may be more susceptible to infections in a
general sense, the fact remains that there is no probative evidence or medical opinion
before the Tribunal to establish the Applicant is immunocompromised at all, much less
due to Down Syndrome. In the Applicant’s particular case, there is no evidence that
the Applicant has a propensity to infections over and above the general population,
and it is notable that no precautions appear to have been taken to mitigate against any
perceived risk posed by exposure to the consumption of tank water over the course of the last two years.
In order for s 34(1)(d) of the Act, requiring that the measure be effective and beneficial, to be activated, it is first necessary to demonstrate a link between the Applicant’s Down’s syndrome and the risk of compromised immunity. That link, notwithstanding some research-based evidence about the greater risk of respiratory infection and heart defects in people with Down’s syndrome, has not been made with respect to waterborne pathogens or the Applicant’s own medical history.
Water Quality
Similarly, to consider whether the water filter would be effective and beneficial under s 34 (1)(d), the water quality must first be demonstrated to be sufficiently poor to pose a risk to the Applicant’s health. The Respondent’s Statement of Issues (16 June,2022) had proposed that the Applicant seek a report from an immunologist and a water engineer, but this was not done by the Applicant and the water quality remains unknown.
During the hearing, the Applicant’s father agreed that no one had suffered an infection from a waterborne pathogen since moving to the house and agreed that there had been no maintenance or cleaning of the tanks, nor monitoring of water quality. The Applicant’s father also advised they were not currently treating the water in any way.
The issue remains, however, as the Applicant’s father pointed out, that the water might be dramatically and quickly contaminated due, for example, to the presence of a dead animal. The Applicant said ‘the water would be spoiled for a few weeks’ and in that time, Cassandra might become sick.
As a general observation, the risk of accidental contamination of rainwater tanks is well understood in rural and regional Australia, and I am inclined to agree with the Applicant’s father, who argued that no amount of water monitoring would enable the anticipation of accidental contamination.
Further expert evidence about the likely nature of such contamination, accounting for factors including the volume of water involved and the possible health consequences of contamination, would have been helpful in establishing the case that the household water is a risk factor for Cassandra.
If the consequences of contamination are so serious that the water becomes unfit for human consumption, that is, unfit for all household members then, as the Respondent asserts in paragraph 3.3 of their Statement of Facts, Issues and Contentions: ‘It cannot be said that it is required on account of the Applicant’s Down’s syndrome’.
The assessment of water quality applies as much to a sporadic episode of water contamination as it does to the ongoing condition of the water. To demonstrate that the Applicant is more likely to suffer infection from contamination than other members of the household, as a result of her condition of Down’s syndrome, remains the threshold question.
The Respondent has established, through questioning the Applicant’s parents, that despite their perception of increased risk to the Applicant, the family took no steps to safeguard themselves or their daughter but has instead chosen to pursue the provision of a water filtration system, which would benefit the entire household.
Value for Money
The Applicant has considered alternative supports, such as the installation of one water filter to the tap in Cassandra’s kitchen, in the General Assistive Technology Assessment Report provided by Ms Stephenson on 17 November 2021. The cost of providing one water tap filter is quoted as $350.
In Ms Stephenson’s assessment, the provision of a water filtration system for the entire house would ‘protect Cassandra’s physical health and vulnerability’ and provide her with ‘increased independence in selfcare and meal preparation, as she will be able to use and drink water from all taps in the house. Providing a filter just in her section of the house will limit Cassandra’s daily routine to only her area, which is restrictive and not in line with how she currently spends her day’. Based on the quoted cost of $3,938, dated 20 May 2022, provided by Insight Plumbing, Ms Stephenson contends this is value for money.
The Tribunal agrees that a water filtration system for the entire house, rather than filters attached to one or two taps, would enhance the Applicant’s independence and reduce the need for monitoring, although no evidence was provided on how compromised the Applicant’s movements are currently, in the absence of any water filtration.
The OT has contended in this same assessment that the Applicant’s cognitive capacity restricts her ability to understand which taps in the house provide treated water if a water filter were to be installed at the tap in Cassandra’s kitchenette.
If an on-tap filter was installed in her area this would limit her safe use of all the other taps in the house. Cassandra has limited cognitive capacity to retain this information independently and would require constant supervision throughout the day, which minimises her independence and would place undue responsibility on her family.
I note no evidence has been provided about the relevant limitations of the Applicant’s cognitive capacity, or how the family currently manages this responsibility, in the absence of any water treatment.
In her assessment, Ms Stephenson further contends that to limit water treatment to only certain taps would also restrict the Applicant’s freedom of movement within the house. While in a sense this is self-evident, it does not seem to be a significant restriction if the Applicant were taught which taps to use.
The Respondent contends in the Statement of Issues (23 September 2022) that the OT, Ms Stephenson, is ‘not qualified to diagnose cognitive impairment’, and therefore Ms Stephenson’s advice rejecting the cheaper alternative of installing a single filter to the kitchen tap, is of little value.
The Applicant’s mother has also referred to the advice of the OT, Ms Stephenson, in contending that a water filtration system for the entire house is preferred to individual water filters. Mrs Kelly agreed that the OT did not assess Cassandra’s capacity to be taught instructions for using only one tap for drinking purposes, but instead relied upon a general statement about Cassandra’s cognitive capacity.
I share the Respondent’s conclusion about the OT’s assessment of the Applicant’s cognitive capacity. I also note the OT provided no psychometric test results about the Applicant’s cognitive capacity, or assessment of the Applicant’s capacity to follow the relevant instructions, in her report.
Consideration
The decision for the Tribunal is whether the installation of a Puretec Hybrid-G7 filtration system with ultraviolet light and weather cover is a ‘reasonable and necessary support’ within the meaning of subsection 33(2) of the Act to be included in the statement of participant supports in her NDIS plan. This requires the Tribunal to be satisfied that the requested support meets all limbs in subsection 34 (1) of the Act, noting the significance of sub-ss 34(1)(c) and (d).
For the following reasons, the Tribunal is not satisfied that the provision of funding for a water filtration system is either effective and beneficial or represents value for money.
The Applicant’s Compromised Immunity
The evidence presented to the Tribunal to support the Applicant’s claim she has compromised immunity as a result of her Down’s syndrome is not positively borne out by either scientific research, or by any factual account of the Applicant’s history of infections, both over her lifetime and during the past two years when she has relied on untreated rainwater for cooking, drinking and bathing. While it is appreciated that the Applicant has complex health needs, including a heart condition, resulting from Down’s syndrome, there was no evidence provided that she also suffers from a heightened propensity to water-borne infections as a result of her condition.
The claim that the Applicant is immunocompromised was primarily made by the OT, Ms Stephenson, who was not qualified to make such an assessment and provided no evidence of it. The Applicant’s doctor made a fleeting reference to her being ‘more susceptible to pick up infections’ but provided no medical history to support this claim, or to expand upon it.
Therefore, the Tribunal finds there is insufficient evidence to show that the Applicant is at greater risk of waterborne infection as a result of her disability, Down’s syndrome. Consequently, a measure such as water treatment, which is designed to lower the risk of infection, is not related to the Applicant’s disability and therefore cannot be considered to be a reasonable and necessary support for the Applicant’s disability pursuant to Rule 5.1.
Water quality
Similarly, no credible evidence has been provided to the Tribunal that the tank water quality elevates the risk of illness to the Applicant. The OT was not qualified to comment on water quality, and notably did not suggest, as the Respondent outlined, that ‘it be tested for bacteria’. The water quality is unknown and is currently untreated, without illness being experienced either by the Applicant or other members of the household who have all entirely relied on tank water for approximately two years.
The Tribunal accepts that accidents, such as dead animals rotting in a rainwater tank, may cause the water to become tainted with pathogens temporarily, but this is also speculative and no evidence was provided to the Tribunal to provide a more comprehensive picture of the threat to Cassandra’s health should such an accident occur. In the absence of expert evidence and lived experience of the water quality experienced by Cassandra, a water treatment support cannot be considered as either beneficial or effective for the participant’s safety.
Value for Money
An alternative to the water treatment system, estimated to cost $3,938, was identified by the OT in her Assistive Technology Assessment. The alternative, a $350 water filter fitted to Cassandra’s kitchen tap, was rejected by the OT because of Cassandra’s cognitive impairment and consequent inability, she asserted, to understand she must only drink from the one tap providing the treated water. Further, the OT claimed it would restrict the Applicant’s freedom of movement around the house and the necessary supervision would place a burden of responsibility on her family.
The respondent has pointed to the lack of evidence to support such a level of impairment, and the Applicant’s mother acknowledged that no assessment of the Applicant’s capacity to be taught to only use the one tap was made by the OT.
The Respondent has also argued that the OT was not qualified to assess the Applicant’s level of impairment and no evidence of any psychometric testing was provided to the Tribunal.
Should water treatment had been found to have been necessary to safeguard the Applicant’s health from infection, there is insufficient evidence to rule out the option of a single tap filter in favour of the Puretec filtration system.
CONCLUSION
The Tribunal acknowledges that the Applicant has a range of health problems, including a serious heart problem, resulting from her Down’s syndrome. The Applicant’s parents have worked hard to provide a safe environment for their daughter and wish to protect her from other harms, such as those associated with the consumption of untreated water.
Having considered all the available evidence, the Tribunal is not satisfied that the provision of a Puretec water filter would improve the safety of the Applicant, because there is insufficient evidence, either clinical or scientific, to demonstrate that the Applicant suffers a higher risk of infection from waterborne pathogens than people without Down’s syndrome
Further, it cannot be demonstrated that the water quality is sufficiently poor to endanger the Applicant’s health and there has been no evidence, including a history of infections which might have been caused by water quality during the time the Applicant has relied solely on tank water, provided to the Tribunal.
In the case of accidental contamination of the Applicant’s tank water, it has not been demonstrated that she is more likely to develop an infection than people without Down’s syndrome, which is the basis for the Applicant’s entry into to the NDIS.
Overall, there is insufficient evidence that the water quality of the rainwater tank is likely to give rise to an elevated risk of infection and harm, or otherwise, by reference to the Down’s syndrome.
The Tribunal is also not satisfied that the option of a single water tap filter has been adequately considered by the Applicant.
DECISION
For the reasons set out above, the Tribunal considers that the criteria set out in subsection 34(1) of the Act, particularly (c) and (d), have not been met.
The Tribunal affirms the decision under review pursuant to subsection 43(1)(a) of the Administrative Appeals Tribunal Act 1975.
I certify that the preceding 133 (one hundred and thirty-three) paragraphs are a true copy of the reasons for the decision herein of Senior Member P Goward
.....................................[sgd]...................................
Associate
Dated: 10 November 2022
Date of hearing: 23 September 2022 Date final submissions received: 4 October 2022 Advocate for the Applicant: Mr Rodney Paul Kelly Counsel for the Respondent: Mr Marco Nesbeth Solicitors for the Respondent: In-house lawyers, National Disability Insurance Agency
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