Spires and National Disability Insurance Agency

[2023] AATA 1230

Spires and National Disability Insurance Agency [2023] AATA 1230 (17 May 2023)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Number(s):      2021/8688

Re:Jaydee Spires

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

DECISION

Tribunal:Senior Member Joanne Collins

Date:17 May 2023

Place:Brisbane

The decision under review is remitted to the Respondent (the ‘Agency’) with the direction that the statement of participant supports in the plan dated 11 August 2021 include, as a reasonable and necessary support, funding for reimbursement for the costs of the installation of a hydrotherapy pool in Ms Spires’ home in the sum of $22,700.00.

......................[SGD]........................

Senior Member Joanne Collins

Catchwords

NATIONAL DISABILITY INSURANCE SCHEME – Hydrotherapy pool – reasonable and necessary support – consideration of section 34 National Disability Insurance Scheme Act 2013 (Cth) – decision set aside and remitted to the Respondent

Legislation

Administrative Appeals Tribunal Act 1975 (Cth) ss2A, ss33

National Disability Insurance Scheme Act 2013 (Cth) ss4, ss21, ss24, ss28, ss34, ss31, ss35

National Disability Insurance Scheme (Supports for Participants) Rules 2019

Cases

Re Drake v Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 60

G v Minister for Immigration and Border Protection [2018] FCA 1229

Mulligan v National Disability Insurance Agency [2015] FCA 544

Shi v Migration Agents Registration Authority (2008) 235 CLR 286

McGarrigle v National Disability Insurance Agency [2017] FCA 308

Secondary Materials

NDIS – Operational Guidelines - Home Modifications    

REASONS FOR DECISION

Senior Member Joanne Collins

17 May 2023

1. Ms Jaydee Spires, a 30-year-old woman, is a participant in the National Disability Insurance Scheme (the ‘scheme’). She seeks funding for a hydrotherapy pool in her home. The issue is whether an in-home hydrotherapy pool (the ‘hydrotherapy pool’) is a reasonable and necessary support[1] for Ms Spires and should be included in her participant’s plan made pursuant to the scheme.

   [1] Section 34 NDIS Act.

2. For the reasons set out below, the Tribunal remits the matter to the Agency with the direction that the statement of participant supports in Ms Spires’ plan dated 11 August 2021 include funding for reimbursement for the costs of the installation of a hydrotherapy pool in Ms Spires’ home in the sum of $22,700.00.

BACKGROUND

1. Ms Spires applied to become a participant in the scheme on the basis of having a ‘Physical Impairment’ as a result of a ‘Chromosome Abnormality – 15q 11.2 deletion’.[2] In considering and approving access to the scheme the Agency’s interaction notes state,

   [2] T7, page 86.

   ‘The information provided confirms that they (the Applicant) have Ehlers-Danlos syndrome, and this meets the disability requirements set out in section 24 of the NDIS Act…’[3]

   [3] R4, NDIS Screenshot.

   …………………………………………………

   “I considered their other reported disabilities. The information does not indicate that these meet the disability or early intervention requirements.

   NB: To not delay the access process PP meets for Ehlers-Danlos Syndrome but more information would be required for chromosomal deletion.’[4]

   [4] Ibid

2. After becoming a participant in the scheme Ms Spires subsequently applied for funding of a hydrotherapy pool in her home as one of her supports.[5] The Agency considered her application and approved a further statement of supports. The further statement of supports did not however include funding for a hydrotherapy pool. The Agency refused such funding on the that basis it considered a hydrotherapy pool did not fulfil all of the criteria in section 34 of the National Disability Insurance Scheme Act 2013 (Cth) (‘NDIS Act’). In this regard the Agency relied on the following criteria as not being satisfied:

   [5] T11; section 48 NDIS Act.

Section 34 - Reasonable and necessary supports

(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;[6]

[6] NDIS Act 2013.

The Agency also relied on the NDIS (Supports for Participants) Rules 2013 (‘NDIS Rules’)[7] and referred to the following.

[7] T12; T1E; T16.

Part 3 Assessing proposed supports – Value for money

3.1(a) – There are comparable supports which would achieve the same outcome at a substantially lower cost.

3.1(b) – there is evidence that the support will substantially improve the life stage outcomes for, and be of long-term benefit to, the participant.

Part 5 - General criteria for supports

Rule 5.1(b) - It is not related to the participant’s disability.

Rules 5.1(d)- It relates to day-today living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.[8]

[8] Section 34 NDIS Act, NDIS (Supports for participants) Rules 2013 Part 3; Part 5.

1. Ms Spires was dissatisfied with this decision and requested an internal review.[9]In considering her request the Agency’s interaction notes state:

   [9] T1H; section 100 NDIS Act.

   ‘Plan Dates: 19/10/2021 – 19/10/2024

   Disability: Autism (Tribunal emphasis added)

   I confirm that this meets all criteria of an s100 (sic)’[10]

   [10] T14.

2. That internal review decision affirmed the original decision on the basis the Agency remained satisfied that a hydrotherapy pool related to ‘day-to-day living cost’ and therefore could not be funded under the scheme. Ms Spires subsequently applied to the Administrative Appeals Tribunal (the ‘Tribunal’) for review of that internal review decision (the ‘decision under review’).[11] The Tribunal’s task in reviewing the decision under review is to stand in the shoes of the original decision maker and make the correct or preferable decision on the material before it.[12]

   [11] Ibid; T1.

   [12] Shi v Migration Agents Registration Authority (2008) 235 CLR 286, [37]-[38], [45]-[46] (Kirby J), [99] (Hayne and Heydon JJ), [140]-[143] (Kiefel J); Drake v Minister for Immigration and Ethnic Affairs (1979) 2 ALD 60.

3. Ms Spires did not attend or give evidence at the hearing. Counsel for the Agency submitted that this approach was ‘an inexplicable course, on the evidence’.[13] I disagree. Ms Spires is autistic and I accept the evidence of her mother, Kaylene Spires (‘KS’) that her daughter is profoundly shy,[14] suffers from severe anxiety and sensory overload, has verbal dyspraxia, was unable to even speak until 7 years of age and continues to require speech therapy for her speech and language difficulties.[15] I am satisfied that it is entirely reasonable that Ms Spires did not attend the hearing and give evidence and that this was in the best interests of her health and well-being.

   [13] Respondent’s Outline of Submissions dated 9 December 2022, at [9].

   [14] Transcript, page 7 at lines 19-20.

   [15] Transcript, page 9 at lines 44-46.

4. Ms Spires was not legally represented and KS advocated on her behalf. During the hearing KS advised of her difficulties with her task as advocate, having only had a formal education to 15 years of age. Subsequent to the hearing and after closing submissions had been provided the Tribunal raised the following matters with both parties:[16]

   [16] Email to parties from AAT dated 20 January 2023.

   (a)    Comments and submissions were sought in relation to the following;

   i.     A journal article titled ‘Ehlers-Danlos Syndrome’ by Tyler Miklovic; Vanessa C. Sieg updated 9 June 2022, and

   ii.   The reference in the Respondent’s material to ‘autism’ as being the Applicant’s disability;[17]

   [17] T14.

   (b)    Ms Spires was also given an opportunity to provide further evidence from her treating cardiologist, Dr Pavlia regarding her cardiac condition and any possible relationship with the Applicant’s diagnosis of Ehlers-Danlos Syndrome.

Neither the Agency nor Ms Spires provided any further comments, reports or submissions in relation to the matters raised by the Tribunal.

THE NATIONAL DISABILITY INSURANCE ACT 2013 (CTH)

1. In respect of what constitutes a ‘reasonable and necessary’ support for the purposes of the NDIS Act, section 34 provides as follows:

   Reasonable and necessary supports

   (1)  For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:

   (a)  the support will assist the participant to pursue the goals, objectives and aspirations included in the participant's statement of goals and aspirations;

   (b)  the support will assist the participant to undertake activities, so as to facilitate the participant's social and economic participation;

   (c)  the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;

   (d)  the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;

   (e)  the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;

   (f)  the support is most appropriately funded or provided through the NationalDisability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:

   (i)  as part of a universal service obligation; or

   (ii)  in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.

   (2)  The National Disability Insurance Scheme rules may prescribe methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (1)(a) to (f).

2. Section 34(1) is cumulative and therefore all criteria must be met.

3. The phrase ‘reasonable and necessary’ is not defined in the NDIS Act. It is a composite phrase and should be considered as such. In McGarrigle v National Disability Insurance Agency, Mortimer J stated as follows:

   Whether a support is “reasonable” requires a different assessment to whether a support is “necessary”. Again, 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”. [18]

   [18] [2017] FCA 308, at [91].

4. Section 35 of the NDIS Act provides for the making of rules in relation to prescribing reasonable and necessary supports or general supports that will not be funded or provided under the scheme.

5. Parts 3 and 5 of the NDIA Rules provide as follows:

   Value for money

   3.1     In deciding whether the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support, the CEO is to consider the following matters:

   (a)     whether there are comparable supports which would achieve the same outcome at a substantially lower cost;

   (b)     whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long-term benefit to, the participant;

   (c)     whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);

   (d)     for supports that involve the provision of equipment or modifications:

   (i)      the comparative cost of purchasing or leasing the equipment or modifications; and

   (ii)     whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;

   (e)     whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;

   (f)      whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).

   Effective and beneficial and current good practice

   3.2     In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:

   (a)     published and refereed literature and any consensus of expert opinion;

   (b)     the lived experience of the participant or their carers; or

   (c)     anything the Agency has learnt through delivery of the NDIS.

   3.3     In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.

   Reasonable family, carer and other support

   3.4     In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:

   (a)     for a participant who is a child:

   (i)      that it is normal for parents to provide substantial care and support for children; and

   (ii)     whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and

   (iii)     the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and

   (iv)    whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;

   (b)     for other participants:

   (i)      the extent of any risks to the wellbeing of the participant arising from the participant’s reliance on the support of family members, carers, informal networks and the community; and

   (ii)     the suitability of family members, carers, informal networks and the community to provide the supports that the participant requires, including such factors as:

   (A)     the age and capacity of the participant’s family members and carers, including the extent to which family and community supports are available to sustain them in their caring role; and

   (B)     the intensity and type of support that is required and whether it is age and gender appropriate for a particular family member or carer to be providing that care; and

   (C)    the extent of any risks to the long-term wellbeing of any of the family members or carers (for example, a child should not be expected to provide care for their parents, siblings or other relatives or be required to limit their educational opportunities); and

   (iii)     the extent to which informal supports contribute to or reduce a participant’s level of independence and other outcomes;

   (c)     for all participants—the desirability of supporting and developing the potential contributions of informal supports and networks within their communities.

   Supports appropriately funded or provided through the NDIS

   3.5     Schedule 1 sets out matters for the CEO to have regard to in considering whether supports are most appropriately funded or provided through the NDIS, rather than through other service systems (service systems is defined in paragraph 6.4).

   3.6     The matters to have regard to are set out under the following headings in the Schedule:

   (a)     Health (excluding mental health);

   (b)     Mental health;

   (c)     Child protection and family support;

   (d)     Early childhood development;

   (e)     School education;

   (f)      Higher education and vocational education and training;

   (g)     Employment;

   (h)     Housing and community infrastructure;

   (i)      Transport;

   (j)      Justice.

   3.7     Where particular supports are set out in the Schedule as being appropriately funded or provided through the NDIS, the CEO must still be satisfied of a number of other matters in order for the supports to be funded or provided (see paragraphs 2.3(a)-(e) of these Rules and paragraphs 34(a)-(e) of the Act).

General criteria for supports

5.1     A support will not be provided or funded under the NDIS if:

(a)     it is likely to cause harm to the participant or pose a risk to others; or

(b)     it is not related to the participant’s disability; or

(c)     it duplicates other supports delivered under alternative funding through the NDIS; or

(d)     it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.

5.2     The day-to-day living costs referred to in paragraph 5.1(d) do not include the following (which may be funded under the NDIS if they relate to reasonable and necessary supports):

(a)     additional living costs that are incurred by a participant solely and directly as a result of their disability support needs;

(b)     costs that are ancillary to another support that is funded or provided under the participant’s plan, and which the participant would not otherwise incur.

1. The Agency also issues Operational Guidelines in relation to what it considers are ‘reasonable and necessary supports’ in a participant’s plan. There is no power conferred by the NDIS Act to make these Operational Guidelines, and they are issued as an exercise of executive power.[19] 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)[20] 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 where Mortimer J held:

   [19]    G v Minister for Home Affairs [2019] FCAFC 79 at [18].

   [20] [1979] AATA 179 (1979) 2 ALD 634.

   “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 …”[21]

   [21] [2018] FCA 1229 at 171.

2. Therefore, unless the Operational Guidelines are inconsistent with the provisions or objects of the legislation, they should be considered in this determination of whether an in-home hydrotherapy pool is a reasonable and necessary support for Ms Spires.

PARTICIPATION IN THE SCHEME

1. Based on review of the material before the Tribunal I am satisfied Ms Spires has the following medical conditions:

   ·Ehlers-Danlos syndrome (‘EDS’),

   ·a chromosome 15 q11.2 deletion (‘chromosome deletion’),

   ·autism spectrum disorder (‘ASD’),

   ·postural orthostatic tachycardia syndrome (‘POTS’),

   ·verbal dyspraxia,

   ·dysautonomia,

   ·endometriosis and adenomyosis,

   ·developmental delay and

   ·insomnia. [22]

   [22] T4; T6.

1. The Agency’s position is that Ms Spires was admitted as a participant to the scheme in response to her disabilities resulting in impairment relevant to her EDS. The Agency accepts that whilst Ms Spires has other impairments these impairments are not the subject of her participation in the scheme.[23]

   [23] Respondent’s Outline of Submissions dated 9 December 2022.

2. KS does not agree with this position. She maintains Ms Spires was granted access to the scheme also on the basis of a diagnosis of autism. KS refers to her historical discussions with the Agency advising that Ms Spires was diagnosed with ASD as a child. Further, that in the absence of Ms Spires obtaining an ASD assessment as an adult (which was considered costly and relatively inaccessible), KS’s evidence was that the Agency advised as follows:

   “So that’s when we were advised to go more down the Ehlers-Danlos thing as the primary, and then the autism as the secondary. So that’s what I thought it would be, her ASD would be listed as the secondary.’[24]

3. I accept the evidence of KS and am satisfied her recollection is accurate. Her evidence is supported by the Agency’s interaction notes mentioned in paragraph [5] which specifically refer to an additional diagnosis of autism.

4. KS describes Ms Spires’ health as being multifaceted and not just confined to her condition of EDS. She refers to Ms Spires’ wider range of needs.[25] She submits that all of the disabilities affecting Ms Spires, as a consequence of her numerous medical conditions,[26] ought to be considered in relation to whether a hydrotherapy pool is a reasonable and necessary support.

5. Given these submissions I consider it is necessary to consider whether Ms Spires’ participation in the scheme is in fact confined to her disabilities resulting from EDS. This requires consideration of the purpose and operation of both Part 1 and Part 2 of Chapter 3 of the NDIS Act and the general principles contained in section 4 of the NDIS Act.

Part 1: Becoming a participant.

[24] Transcript, page 43 at lines 20-31.

[25] Transcript, page 28 at line 37.

[26] Paragraph 15 of these Reasons for Decision.

1. Part 1 of the NDIS Act deals with the requirements to become a ‘participant’ in the scheme, which is effectively on the basis of whether or not a person meets the ‘access criteria’. The criteria by which a person meets the access criteria are set out in Part 1 of Chapter 3 of the Act (sections 21-25). Section 21 of the Act provides that for a person to meet the access criteria, they must meet the age, and residence requirements in addition to either the disability requirements (section 24 of the Act) OR the early intervention requirements (section 25 of the Act).

2. Section 28 of the Act provides that a person becomes a participant in the scheme on the day the Agency decides that the person meets the access criteria (the ‘grant of access’). Once a person becomes a participant in the scheme the Agency’s statutory powers in respect of revocation of their status as a participant are confined to section 30 of the Act which provides as follows:

   Revocation of participant status

3. The CEO may revoke a person's status as a participant  in the National Disability Insurance Scheme if:

   (a) the CEO is satisfied that the person does not meet the residence requirements (see section 23); or

   (b) the CEO is satisfied that the person does not meet at least one of the following:

   a. the disability requirements (see section 24);

   b. the early intervention requirements (see section 25).

   2. The CEO must give written notice of the decision to the participant, stating the date on which the revocation takes effect.

4. Therefore, once a person has been granted access to the scheme there is no statutory power available to the Agency to subsequently and unilaterally attach a condition or conditions to a grant of access, particularly a condition or conditions which seek to limit or modify the nature and extent of the grant of access to the scheme. This construction of the mechanism under Part 1 is reflected in section 4(3) of the Act which provides;

   “People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.”

5. In my view, Part 1 provides a statutory mechanism for entry to the scheme. It is then Part 2 which follows and provides the ‘mechanism’ for the subsequent review, re-assessment and variation of the supports that will be provided to a participant. This ‘mechanism’ has regard to the nature and circumstances of a participant’s needs throughout their lifetime. It occurs at statutory intervals and is also available at other relevant points in time, including at the request of the participant and also at the initiative of the Agency.[27]

   [27] Section NDIS Act.

6. The mechanism in Part 2 is logical. A participant’s diagnosis, diagnoses, impairments and needs may, and often do, change with the advancement of age and the passage of time generally. Relevantly, this is reflected in section 31 of the Act which deals with the principles relating to plans and provides:

   “The preparation, variation, reassessment and replacement of a participant's plan, and the management of the funding for supports under a participant's plan, should so far as reasonably practicable:

   (a)  be individualised; and

   (b)  be directed by the participant; and

   ………………………………………………

   (j)  facilitate tailored and flexible responses to the individual goals and   needs of the participant”

   …………………………………………………

7. I do not consider that the intention of this legislation was to require Ms Spires to satisfy the disability requirements under section 24 in respect of additional impairments which may co-exist or subsequently develop in the course of her lifetime. Such a requirement would create a regime requiring multiple applications to the Agency over her lifetime. This would generate enormous cost and, in my view, does not accord with the prudent commercial practice of the Agency as an insurer with obligations also to ensure the financial sustainability of the NDIS Act.

8. The Tribunal will not read into the statute a requirement that is not expressed and would conflict with the letter and the spirit of the scheme which is intended to support people with disability for the duration of their lifetime. The Agency’s submission is not accepted as it is not consistent with the statute as drafted.

9. Accordingly, this merits review will not be confined to whether the funding of a hydrotherapy pool is a reasonable and necessary support on the sole basis of Ms Spires’ disabilities as a result of EDS.

MS JAYDEE SPIRES

1. Ms Spires lives in her own home with KS, her father and her companion and hearing assistance dog ‘Zander’ at Emu Park, Queensland. KS is her full-time carer, with her father working away from home for seven consecutive days each alternate week. Ms Spires has a number of pets including three cats, one parrot and a Labrador whom she describes as ‘my calming influences’.[28] In referring to herself Ms Spires states:

   ‘I used to have a very active outdoor life where I was a participant in spelunking and worked at the Capricorn Caves. I can no longer perform these actions and I very much miss being active. I love being creative, art, music and want to learn to sew. My disability has prevented me from doing the things I love and I would very much appreciate assistance to bring these things back to my daily life’.[29]

   [28] T16; NDIS Plan dated 11 August 2021, page 4.

   [29] Ibid.

2. Despite being refused funding for a hydrotherapy pool, on 1 December 2021 Ms Spires purchased a ‘Spa Oasis Swim 4.4 Pro Platinum’ swim spa, from a local pool shop. It was subsequently installed in her home.[30] The cost of the hydrotherapy pool, including installation, was $27,200.00.[31] The dimensions of the hydrotherapy pool are approximately 4.4m x 2.35m x 1.29m. It is described as a rectangle container of water, approximately twice as large as a spa bath with a bucket seat.[32] It is set up with a pole attached to a sling to allow access into the hydrotherapy pool. It also has handles for further assistance.[33]

   [30] Respondent’s Outline of Submissions dated 9 December 2022 at [7].

   [31] Transcript, page 16 at lines 46-47; page 17 at lines 2-6.

   [32] Transcript, page 85 at lines 20–30.

   [33] Transcript, page 78 at lines 24–29.

3. The Agency accepts that the Tribunal may order reimbursement of the funds expended in relation to the costs of the hydrotherapy pool.[34]

   [34] Respondent’s Outline of Submissions dated 9 December 2022 at [20].

Ms Spires’ medical conditions

1. Whether a hydrotherapy pool is a reasonable and necessary support for Ms Spires requires consideration of the nature and effect of the disabilities that arise as a consequence of her medical conditions. Based on the evidence I am satisfied the following medical conditions are relevant to determining whether a hydrotherapy pool is a reasonable and necessary support for Ms Spires.

Chromosome Deletion

1. Ms Spires has a chromosome deletion which was diagnosed in May 2014, by Dr Michael Gattas, geneticist. Dr Gattas advised that her chromosome deletion was a ‘risk factor for a range of neuro-developmental problems that include language delay, autism and behavioural problems’ and ’mental health problems that can include anxiety, depression or obsessive-compulsive disorder’.[35]

Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS)

[35] T4.

1. In June 2018 Dr Gattas also diagnosed Ms Spires with Ehlers-Danlos Syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS).

2. EDS is a condition affecting the connective tissues of the body. It is associated with hyper- flexible joints to the extent of recurrent dislocation, joint pain, significant fatigue and fragile and very sensitive skin.[36]

   [36] A1, Report of Mr B Snell.

3. POTS, a form of dysautonomia, is a disorder of the autonomic nervous system affecting blood pressure, breathing, heart rate and skin and body temperature regulation. Symptoms associated with POTS include fatigue, exercise intolerance, dehydration, noise and light sensitivity, poor balance, dizziness, poorly regulated blood pressure and difficult regulation of body temperature.[37]

   [37] Ibid.

4. Dr Gattas referred to Ms Spires’ EDS and POTS in the following terms:

   “Ehlers-Danlos syndrome refers to a group of several different disorders. The most common of these is hypermobile EDS. The hallmarks of this condition are increased joint flexibility, musculoskeletal pain and fatigue. The symptoms can include POTS, and clumsiness or poor awareness of joint position and space. The symptoms are quite variable between different individuals. The treatment involves building up muscle tone with regular by gentle exercise, getting adequate rest. Simple measures such as heat packs and massage are also important. For some people, the use of compression garments or stockings has been shown to help alleviate some of the pain and discomfort in the musculoskeletal system”.[38]

   [38] T5.

5. As a consequence of EDS, ‘bruising’ is also an issue for Ms Spires. Dr Ian Irving, haematologist, reviewed Ms Spires in 2018 and concluded her tendency to bruise easily was due to her EDS.[39]

Autistic Spectrum Disorder (ASD)

[39] T6.

1. Ms Spires was diagnosed with Autism Spectrum Disorder (ASD) as a child.[40] KS’s evidence is that Ms Spires was developmentally delayed as a child, has speech and language difficulties and suffers from severe anxiety (in particular social anxiety), stress, emotional dysregulation and sensory overload.

Heart condition

[40] Transcript, page 43 lines 19–20.

1. In June 2018 Dr Gattas recommended that Ms Spires have an ultrasound of her heart on the basis that;

   “Hypermobility is very non-specific and seen in many of the heritable disorders of connective tissue. The ultrasound of your heart is to look for dilatation of the aorta, which is seen in the condition Marfan syndrome”.[41]

   [41] T5.

2. Ms Spires receives ongoing treatment from a cardiologist, Dr Pavia. KS’s evidence refers to Ms Spires having a heart valve condition which may require surgery in the future.

Insomnia

1. Ms Spires is affected by insomnia, a condition relating to an inability to sleep or habitual sleeplessness.

Ms Spires’ disabilities

1. On the basis of this evidence, I am satisfied that Ms Spires is adversely affected by the following disabilities:

   ·hypermobile joints with a recurrent risk and likelihood of joint dislocation or other injury,

   ·skin fragility, sensitivity and bruising,

   ·clumsiness,

   ·social anxiety,

   ·difficulties with emotional regulation,

   ·sensory overload,

   ·poor balance,

   ·dizziness,

   ·poorly regulated blood pressure,

   ·dehydration,

   ·difficulty regulating body temperature,

   ·severe fatigue and tiredness,

   ·extremely low energy levels,

   ·poor exercise tolerance, and

   ·regular and unpredictable seizures.

EVIDENCE OF KS

1. At the hearing KS gave oral evidence. It was evident that she had an intimate understanding of the complexities and realities of Ms Spires’ disabilities. I found her evidence to be truthful, reasonable and persuasive. Her selfless commitment to her daughter is commendable.[42]

   [42] Section 4(12) NDIS Act.

2. KS described Ms Spires as having different abilities on different days.[43] As a further challenge, Ms Spires’ abilities vary at different times of each day with a high degree of unpredictability. The volatile and unpredictable nature of Ms Spires’ disabilities means that daily ‘plans’ must often be cancelled without any warning or notice, as Ms Spires is simply too unwell. On many occasions Ms Spires will wake and simply be too unwell to get out of bed. KS explained the reality as being ‘we just have to take it as it comes’.[44]

   [43] Transcript page 10 at lines 6-7.

   [44] Transcript, page 35 at lines 29-30.

3. Ms Spires suffers from constant fatigue and exhaustion. She has finite levels of energy which are easily and quickly depleted. She requires assistance 24 hours per day. She is unable to access the community unaccompanied due to her medical conditions and attachment issues associated with her autism.[45]

   [45] Transcript, page 34 at lines 6; 22-24.

4. As a result of EDS Ms Spires has ‘hypermobility’ of her joints and ligaments which are ‘like an elastic band that’s over stretched’.[46] Ms Spires is prone to injuries undertaking even simple tasks like carrying a basket of washing, loading a washing machine or pegging out clothes.[47] She is also prone to subluxations of her joints,[48] twisting of her knees[49] and shoulder-joint subluxations.[50] Ms Spires wears support braces and has one rib bone that ‘pops out’ regularly. She has extreme difficulty coordinating her limbs, frequently trips over, is clumsy, bumps into walls and doors and regularly spills drinks. She can twist her ankle simply going for a walk. 

   [46] Transcript, page 13 at line 29.

   [47] Transcript, page 13 at lines 32-35.

   [48] Transcript, page 55 at line 11.

   [49] Transcript, page 31 at line 15.

   [50] Transcript, page 27 at lines 35-36.

5. Ms Spires has difficulty regulating her body temperature. She also has extreme skin sensitivity to chemicals such as chlorine. Historically she has broken out in hives and experienced a sensation of burning skin following exposure to chlorine.[51]

   [51] Transcript, page 20 at lines 2–11.

6. Ms Spires has difficulty retaining body salt and is severely affected by dehydration. Chlorine increases her propensity to dehydrate. She is required to drink at least three litres of water each day,[52] including electrolyte sports drinks. In order to retain a healthy salt and electrolyte balance Ms Spires requires fortnightly saline drip infusions.[53] Dehydration also lowers Ms Spires’ blood pressure and predisposes her to fainting.[54] She requires a member of the family to be nearby whenever she showers.[55]

   [52] Transcript, page 21 at lines 9-10.

   [53] Transcript, page 20 at line 38 to page 21 at line 22.

   [54] Transcript, page 20 at line 47.

   [55] Transcript, page 32 at lines 31-47.

7. Ms Spires experiences regular and unpredictable seizures. The frequency of these seizures has reduced since commencing heart medication approximately 12 months ago; however, they still occur every couple of weeks and are more frequent ‘when the weather is hot’.[56] After a seizure Ms Spires is generally unable to get out of bed for three to four days and can require wheelchair assistance to access the toilet.[57]

   [56] Transcript, page 15 at line 40 to page16 line 4; T1I: Statement of Kaylene Spires.

   [57] Transcript, page 16 at lines 2-3.

8. Ms Spires’ companion dog has an invaluable role in alerting others when she is likely to experience a seizure. In these circumstances, Ms Spires has learnt to lean on her companion dog, who then gently lowers her to the ground, thereby avoiding an impact fall.[58] KS described the companion dog as having changed Ms Spires’ life for the better in so many ways.[59] She explained the importance that the companion dog is not distracted and remains vigilant of Ms Spires at all times.[60]

   [58] Transcript, page 16 at lines 25–28.

   [59] Transcript, page 15 at lines 29-30.

   [60] Transcript, page 16 at line 41.

9. Over the years there have been numerous attempts by Ms Spires to access both land-based and water-based exercise programs. Ms Spires prefers water-based exercise as it allows her to move her body in a way that she knows will not result in an injury.[61] Even when injured, she is still able to gently exercise in the water with a healing effect.[62] By comparison, land-based programs such as gymnasiums have not provided the same benefit and have a greater level of risk of injury. Ms Spires’ attendance at gymnasiums has also been met with levels of resistance and concern from the operators of gymnasiums.[63]

   [61] Transcript, page 13 at lines 13-14.

   [62] Transcript, page 13 at lines 17-18; page 19 at lines 11-15.

   [63] Transcript, page 28 at lines 35-36.

10. Historically, accessing public swimming pools for hydrotherapy has been unsuccessful and considered unsuitable for a variety of reasons, including the following:

    ·It is like a ‘marathon’ for Ms Spires. This is because she has limited energy reserves and the effort required to access a public pool renders her to the point of exhaustion with little or no capacity to actually exercise once in the water;

    ·KS described the steps required to access a public swimming pool for a booked session of hydrotherapy with support workers as follows: getting out of bed, showering, having breakfast, getting dressed, packing a swim bag, packing supplies for her companion dog, getting herself and her companion dog in a car, driving to the public facility, getting herself and companion dog and swim bag out of the car, traversing to the public pool facility, changing into her swimwear and then finally entering the water, albeit all with assistance. When Ms Spires finally arrives at the public swimming pool she will often state “I can’t do this”;[64]

    ·A trip to a public swimming pool for therapy is a ‘huge chore’ for Ms Spires. It is highly stressful, anxiety provoking, embarrassing, not at all enjoyable and thoroughly exhausting. Furthermore, upon return home she has no energy for any other activity whatsoever;

    ·Ms Spires requires two people to attend with her at a public swimming pool; one person in the water with her and another person on the side of the swimming pool with her companion dog.[65] Support workers must be booked in advance, and if Ms Spires is too unwell to leave her home she must forfeit the costs associated with the support workers and transport;

    ·The toilets and showers at a public pool are ‘not a reasonable option’ for Ms Spires’ individual needs.’[66] Her companion dog is unable to fit inside the toilet cubicle and therefore another person must stand nearby with her companion dog when she is toileting or using change rooms;[67]

    ·Members of the public including small children regularly approach Ms Spires at the public swimming pool to her to talk to her about her dog. This adversely affects her in the context of her ASD and significant social anxiety. Ms Spires is extremely shy and strongly dislikes being the centre of attention. She will not talk to people that she does not know.[68] She finds random approaches from members of the public highly distressing and anxiety-provoking. This is further compounded by the fact that she is wearing swimwear and she perceives her dignity and privacy as being compromised.[69] Importantly, these approaches also compromise the dog’s level of vigilance in respect of monitoring her likelihood of seizure;

    ·Historically, the operators of public swimming pool operators have raised concerns in the context of her level of disability and the requirement for her companion dog to accompany. When this has occurred, as a result of her anxiety and ASD, Ms Spires will ‘dig her heels in’ become ‘immovable’[70] and simply be unable to undertake hydrotherapy;

    ·Ms Spires is affected by sensory overload which is so severe she is unable to tolerate the ticking of a battery-operated clock.[71] Her sensory overload is exacerbated in noisy public places such as shopping centres and public swimming pools;[72]

    ·The pavers at public swimming pools are often uneven, there are also trip hazards and wet surfaces. Toilets and showers represent a significant risk for Ms Spires who has poor limb coordination and is prone to tripping and fainting;

    ·Ms Spires is highly sensitive to the chlorine in public swimming pools; and

    ·Ms Spires vomits ‘all the time’. She must take vomit bags with her at times when accessing the community.[73]

    [64] Transcript, page 34 at line 39.

    [65] Transcript, page 14 at lines 20-27.

    [66] Transcript, page 12 at lines 14–15; T1I.

    [67] Transcript, page 14, at line 7-9.

    [68] Transcript, page 24 at lines 32–33.

    [69] Transcript, page 11 at line 42 to line 47.

    [70] Transcript, page 41 at line 23.

    [71] Transcript, page 12 at lines 36–43.

    [72] Transcript, page 13 at lines 2-3.

    [73] Transcript, page 48 at lines 41-41.

1. Prior to the installation of the hydrotherapy pool Ms Spires was very unwell and not able to access the community to any great extent.[74] Her cardiologist had discussed the likelihood of heart surgery, but for this not to occur until she had lost some weight and gained more strength, muscle tone and physical conditioning.[75] Ms Spires has now been advised by her cardiologist that this surgery is no longer urgent due to the improvement in her health as a result of regular hydrotherapy  and commencing heart medication. KS explained that the cardiologist has advised “keep doing what you’re doing because it is beneficial for you and it’s helping you”.[76] KS contends therefore that the hydrotherapy pool has been proven to be beneficial for Ms Spires.[77] KS described 2022 as being the ‘first year, in years that Jaydee has been able to access the community and she has really achieved a lot of her goals that she put in through the NDIS’.[78]

   [74] Transcript, page 18 at lines 39-40.

   [75] Transcript, page18 at lines 6-8; T1I.

   [76] Transcript, page18 at lines 38-39.

   [77] Transcript, page 18 at lines 25–32.

   [78] Transcript, page 18 at lines 38–42.

2. In the past, Ms Spires enjoyed socialising with friends, however she had been unable to do this in recent years due to severe fatigue and low energy levels. She now feels much better, with more energy and mobility and less pain. KS described Ms Spires as being able to do more in 2022 than in the past four years.[79] Recently Ms Spires even felt well enough to meet with a friend in the community for coffee. These achievements were described by KS as being both remarkable and amazing.[80]

   [79] Transcript, page 18 at lines 41-42.

   [80] Transcript, page 18 at line 47; page 19 at lines 23-25.

3. KS submitted that the therapy pool was ‘the best option for Jaydee for her health and wellbeing’[81] and could be justified as a reasonable and necessary support for the following reasons:

   [81] Transcript, page 7 at line 2.

   ·It can be accessed at any time of the day, for any length of time, including multiple short hydrotherapy sessions. If Ms Spires is unwell in the morning, she can delay her exercise to later in the day when she is feeling better;

   ·She can access the hydrotherapy pool, which is chest high, on her own. Unlike a public swimming pool, she does not require another person to be in the water with her. Her mother and companion dog only need remain nearby in the family home;

   ·The hydrotherapy pool provides a level of independence with access to hydrotherapy whenever she well enough,[82] and without significant support from her parents or others;

   [82] Transcript, page 12 at line 27.

   ·Ms Spires has not had a seizure in the hydrotherapy pool since its installation. This is because she has the ability to choose when she uses it. If she is unwell, she simply does not exercise until she feels well enough, which can include in the evening;[83]

   [83] Transcript, page 12 at lines 28-30.

   ·In the event of an injury or dislocation she can easily and quickly access the hydrotherapy pool and recover quickly by doing gentle water therapy;

   ·Natural products are used in the hydrotherapy pool thereby avoiding the complications of hives and rashes which occur as a result of the chlorine used in public swimming pools;[84]

   ·In a public facility Ms Spires becomes overwhelmed with social anxiety. In contrast, the hydrotherapy pool allows Ms Spires to concentrate on her hydrotherapy without high levels of anxiety;[85]

   ·She feels ‘safe’ in the hydrotherapy pool and has a sense of well-being and relaxation. It also assists in managing her stress levels;

   ·When experiencing sensory overload Ms Spires can easily access the hydrotherapy pool, float in it with the water over her ears and relieve her symptoms;

   ·Ms Spires’ sensory overload is amplified in public places including public swimming pools;

   ·Ms Spires struggles to regulate her body temperature. The temperature of the hydrotherapy pool can be easily regulated, unlike public swimming pools;

   ·Ms Spires has tried land-based interventions for many years without any significant improvement to her mobility. Since the installation of the hydrotherapy pool, she has made more progress in terms of her health and well-being than in previous years;[86] 

   ·The benefits of the hydrotherapy pool are evidenced by the improvement in Ms Spires’ health as confirmed by recent review by her cardiologist.[87] They are also evidenced by the fact she has felt well enough to access the community and engage with a friend;[88] and

   ·The hydrotherapy pool is portable as it is not built into the ground. It can be relocated should Ms Spires relocate.[89]

   [84] Transcript, page 20 at line 4.

   [85] T1I.

   [86] Transcript, page 30 at lines 31–34.

   [87] Transcript, page 18 at lines15–42.

   [88] Transcript, page 19 at lines 23-25.

   [89] Transcript, page 10 at lines 35–36.

4. KS contended the suggestion by Hannah Lewis, occupational therapist, that Ms Spires could walk to the nearby Emu Park Pool (EPP) was the ‘most dangerous suggestion I’ve ever heard’.[90] A trip to the EPP, even in a wheel chair, would leave her with ‘no energy to actually do the hydrotherapy lesson or even enjoy the hydrotherapy lesson and there would probably be no way that she would make it home because we’d have to call an ambulance and she would probably be hospitalised’.[91]

   [90] Transcript, page 8 at line 39.

   [91] Transcript, page 9 at lines 2-6.

5. From a practical perspective, the Tribunal raised with KS the scenario of Ms Spires being driven to the EPP as an alternative. KS acknowledged that whilst motor vehicle transport to the EPP was an option, it needed to be considered in the context of the following matters:

   • The cost of funding the transport;

   • The costs of funding accompanying support worker/s;

   • The requirement to book a time slot for this activity; and

   • The reality of ‘wasted costs’ in the context of Ms Spires being too unwell or too anxious to attend hydrotherapy on a given day, or weather not permitting.[92]

   [92] Transcript, page 11 at line 21; 40; 26.

6. KS submitted that the ‘therapy pool has to come first for her health and wellbeing, and if she doesn’t have that first then she’s unable to access the community.’[93] Further, that whilst the EPP may be suitable for many other people with a disability it is simply not a viable option for Ms Spires having regard to the nature of her particular disabilities.

   [93] Transcript, page 6 at lines 37-38.

EVIDENCE OF MS GREEN AND MS SNELL

1. Prior to the installation of the therapy pool, Ms Green, occupational therapist, assessed Ms Spires at her clinic and recommended a hydrotherapy pool as a therapy intervention.[94]

   [94] T1C.

2. Ms Green and Mr Snell, physiotherapist, then did a joint functional assessment of Ms Spires including a ‘trial’ of the hydrotherapy pool at the pool shop before its purchase.[95] They both considered the trial successful and recommended an in-home hydrotherapy pool referring to the following rationale:

   ·It would provide an opportunity for Ms Spires to exercise on a daily basis without having to leave the home;

   ·The increased exercise would improve Ms Spires exercise tolerance, strength, muscular endurance and co-ordination with less pain;

   ·As a consequence, Ms Spires would have greater energy reserves;

   ·With greater energy reserves Ms Spires could be more independent with her personal cares and activities of living without the assistance of her parents;

   ·Ms Spires would also have more energy to access the community for activities other than exercise and this included engaging with friends.[96]

   [95] A1.

   [96] T11.

3. As well as providing evidence prior to the installation of the hydrotherapy pool (and during the trial at the pool shop) Mr Snell also provided evidence of the benefits to Ms Spires after its subsequent installation in her home.[97]

   [97] T1J; A1.

4. Three months after the installation of the hydrotherapy pool in Ms Spires’ home Mr Snell reported the following benefits:

• The configuration of the hydrotherapy pool allowed Ms Spires to use the pool on her own without another person having to be in the water with her;

• It is one consistent, safe depth and there is a decreased risk of her falling;

• It is maintained with organic, low irritability non-chlorine-based products;

• The temperature can be easily regulated;

• It can be accessed twenty-four hours per day, seven days per week and Ms Spires has a choice over when it best suits her to exercise having regard to her health;

• Access is not subject to carer or transportation availability;

• Exercise equipment is accessible as it can be stored near the hydrotherapy pool. By comparison, exercise equipment needs to be transported each time to a public facility;

• Ms Spires’ sensitivity to auditory input, particularly sudden loud sounds as well as bright lights is avoided in a home environment; and

• It allows Ms Spires to complete an exercised-based therapy each day and still have sufficient energy reserves to engage in other activities of daily living and personal cares without total intervention from her parents, as well as social activities.[98] 

  [98] T1J.

1. Relevantly, at the time of the hearing, in his oral evidence Mr Snell was able to quantify for the Tribunal the improvements in Ms Spires’ exercise tolerance since the installation of the hydrotherapy pool. When first installed her exercise tolerance was limited to around five or six minutes. After a period of time, it plateaued at 15 minutes. At the time of the hearing Ms Spires was able to tolerate almost 25 minutes with a goal of 30 minutes.

2. Mr Snell attributed these improvements to regular and flexible access to hydrotherapy using the hydrotherapy pool in Ms Spires’ home. In particular, he emphasised the importance for flexibility as follows:

   “And even when I come to visit Jaydee I have to be so flexible on that day as to what type of interventions I do.  I can’t always get her in the pool on that day………. - maybe that afternoon she will message me and suggest that she was able – she felt better and she was able to get in the pool later that day and that’s purely because it’s at home and as her condition modifies to a state where it’s comfortable enough for her to get up and exercise, or the energy level is up, she can then walk the four metres across, you know, the back deck and then just sit in the pool”.’[99]

   [99] Transcript, page 58 at lines 25–33.

3. Mr Snell explained that in a public pool Ms Spires had to support her own body weight on her feet, with another person in the pool with her at all times. He compared this to the hydrotherapy pool which he described as a ‘container’ of water in which Ms Spires could sit in a bucket seat and exercise at a controlled depth based on how she was feeling. Mr Snell stated:

   “I’ll be honest with you, she presents more often that not in a position where she can’t just swim across the pool or, you know, chase a ball, or monkey around a wall. Often, it’s not really mobile and it’s just doing a bit of water therapy where she does something with one hand or two feet or something at a time. Her weight is on her backside in the pool, leaning up against the wall. A big difference, yes”.[100]

   [100] Transcript, page 80 at lines 34–39.

4. Mr Snell conducted assessments of local public swimming pools as alternative hydrotherapy facilities for Ms Spires.[101] A pool located at Zilzie was considered wholly unsuitable with inadequate access, including no ramp and no chair to lift Ms Spires from a wheelchair access point. The closest pool to Ms Spires’ home, Emu Park Pool (EPP) has a level of accessibility with a ramp into the pool followed by a ‘step off’ into the water. Mr Snell explained that a ‘manoeuvre’ is required when accessing this pool involving one pole that is hung onto when ‘stepping off’ into the pool. Mr Snell’s opinion is that Ms Spires could probably manage this manoeuvre ‘maybe’ once a month. Importantly, he explained that “if you get that wrong, you spin off”.[102]  He emphasised that using the EPP pool meant he would always need to be in the pool at the time Ms Spires was ‘stepping off’ into the water.

   [101] T1J.

   [102] Transcript, page 79 at lines 7-8

5. The third option considered by Mr Snell is a public pool located in Yepoon approximately 16 km from Ms Spires’ home. This pool has better access and uses a chair with arm rests that could lift Ms Spires into the pool. Mr Snell stated that whilst the Yepoon pool could ‘possibly work’, it was not a cost-effective option having regard to an admission fee of $3.50, transport costs and the amount of time Ms Spires would actually be in the water after factoring the return travel times. He also expressed concerns in respect of management of the chlorine levels at the Yepoon pool. In summary, Mr Snell’s view was that the effort of getting to and from the Yepoon pool would be so fatiguing for Ms Spires it would take away the benefit of any exercise.[103]

   [103] Transcript, page 82 at lines 39–43.

6. Mr Snell advised that his enquiries with the managers of the EPP and the Yepoon pool, indicated that the decision to remain open in the cooler months was always at the discretion of the managing authority.

EVIDENCE OF MS LEWIS

1. Ms Lewis, also an occupational therapist, provided a report and oral evidence. She has never met or assessed Ms Spires. She appropriately acknowledged the limitations of her opinion and stated:

   ‘In my opinion, a full assessment of Ms Spires’s (sic) home environment, her mobility/function within the home, and use of her current assistive technology, is required before determining her full (actual) functional capacity across all indoor and outdoor environments.’[104]

   [104]  R2, OT Report dated 26 February 2022 at page 7.

2. Ms Lewis’ opinion was based on the material provided to her by the Agency which included the reports of various medical practitioners and allied health professionals.  Relevantly she stated ‘I’ve done the best I can… I believe it was a difficult circumstance to work with yes. I’ve done the best I could.”[105] 

   [105] Transcript, page 99 at lines 25-27.

3. In her oral evidence Ms Lewis confirmed she does however have experience treating people with EDS and ASD. Ms Lewis gave evidence in relation to alternative public swimming pool facilities that could be accessed by Ms Spires. She explained that her opinion was based on ‘online searches’ and was very brief. She had not inspected any of the alternative facilities that she proposed. She had also not contacted the operators of these proposed facilities to ascertain whether they were suitable for Ms Spire’s needs.[106] Ms Lewis’ evidence was not persuasive and carried little, if any, weight at all to my decision.

Subparagraph 34(1)(a): Will the hydrotherapy pool assist Ms Spires to pursue her goals, objectives and aspirations.

[106] Transcript, page 99 at lines 39-44.

1. The Agency submits that the hydrotherapy pool does not assist Ms Spires in meeting her goals and aspirations and that s34(1)(a) of the Act is not satisfied.[107]

   [107] Respondent’s Outline of Submissions, dated 9 December 2022 at [26]

2. In her NDIS plan Ms Spires refers to the following goals:

   ‘I would like to engage with allied health professionals that can recommend therapies.

   I will engage with allied health professionals to have assistive technology assessments, quotes and recommendations completed.

   I will engage with supports who can assist me to maintain and improve my mobility and strength

   …………..

   My allied health professionals will assist me by recommending the appropriate assistive technology, consumables, modifications need to assist me to reach my goals’[108]

   I would like to as independently as possible compete my personal care, and all aspects of daily living tasks so that my parents are not doing everything for me

   I would like to attend activities in the community that I enjoy and prevent my social isolation.’[109]

   [108] T1B, page 166.

   [109] Ibid.

3. As Ms Spires has already installed a hydrotherapy pool in her home it is relevant to consider the events prior to installation of the hydrotherapy pool in her home. In doing so I am satisfied that prior to the installation of the hydrotherapy pool:

   ·Reasonable attempts had been made to access a number of local swimming pools within Ms Spires’ geographical location. This includes the purchase of annual passes and travel to various locations including discussions with various pool operators.[110]

   ·Ms Spires engaged in a trial of a hydrotherapy pool for a period over a number of weeks during which Mr Snell was present on at least 4 occasions.

   ·Mr Snell’s evidence referred to the challenges of using the hydrotherapy pool located at the local swim shop on the basis it rendered Ms Spires fatigued to the extent she was thereafter unable to participate in other activities of daily living (‘ADLs’) or social engagements. He thereafter recommended an in-home hydrotherapy pool for Ms Spires and stated:

   ‘By having a home therapy, Jaydee will be able to complete her therapy and then have the energy to attend social events with the time energy and opportunity to engage with people in a manner that allow greater social interaction.’[111]

   ·Ms Spires obtained an opinion from both Mr Snell and Ms Green that an in-home hydrotherapy pool was a support that would improve her mobility and strength and assist her in reaching her goals. These goals include being able to access hydrotherapy with a degree of independence from others including her parents, support workers and her physiotherapist. They also include achieving a level of sufficient health and well-being to be able to access the community for social activities.

   [110] Transcript, page 55 at lines 24-29.

   [111] T1J.

4. Subparagraph 34(1)(a) of the Act is satisfied.

Subparagraph 34(1)(b): Will the hydrotherapy pool assist Ms Spires to undertake activities, so as to facilitate her social and economic participation.

1. The Agency submits the hydrotherapy pool does not assist Ms Spires with her social and economic participation.[112]

   [112] Respondent’s Outline of Submissions dated 9 December 2022, at [26].

2. Ms Spires is affected by multiple medical conditions which need to be considered in combination in order to avoid a risk to her safety[113] and manage her levels of fatigue, sensory overload and anxiety.  Her therapy options are either land-based or a water-based and Mr Snell’s evidence in relation to the disadvantages of land-based therapy as compared to the benefits of water-based therapy was persuasive. The disadvantages and risks of land-based therapy include:

   • a lot more supervision,

   • the risk of dislocation, joint damage and pain, and

   • the risk of fall related injuries.[114]

   [113] Transcript, page 55 at lines 3-6.

   [114] A1.

3. In comparison, water-based therapy allows Ms Spires to use the natural resistance of water to regulate the load on her joints and avoid excessive joint loading. Hydrotherapy also provides many other benefits with a reduced risk of injury. These other benefits include improved strength, co-ordination, cardio-vascular fitness, exercise tolerance, muscular endurance, reduced pain levels and greater flexibility and range of joint motion.

4. I accept the evidence of the KS, Mr Snell and Ms Green that Ms Spires fatigues easily and only has so much energy on any given day. Accessing an exercise program outside the home, whether that be at a public swimming pool or a gym, exhausts Ms Spires to the extent she is unable participate in any further activities for the remainder of the day. The hydrotherapy pool in Ms Spires’ home has meant that she is no longer required to leave the home for her hydrotherapy. The energy reserves that she would otherwise use (to the point of depletion) in travelling to and from public swimming pools can be used for other activities including social participation and other activities of daily living.

1. I am satisfied that hydrotherapy is the preferable exercise for Ms Spires as compared to a land-based intervention such as a gymnasium. She can now exercise at home regularly, with a level of independence and a high degree of flexibility, having regard to how well she is feeling at any given time. The benefits of the hydrotherapy pool at her home have already been evidenced by an improved exercise tolerance from 5 minutes to 25 minutes and a favourable report from Ms Spires’ cardiologist. As a consequence of hydrotherapy exercise at more consistent and regular intervals, Ms Spires, for the first time in many years, has felt well enough and had sufficient energy reserves to access the community for social participation. This is a significant achievement for Ms Spires and should be facilitated and encouraged to the greatest extent possible.

2. I am therefore satisfied that the hydrotherapy pool in Ms Spires home has been responsible for significant improvements in her health and well-being. It has also allowed her to improve her health and retain sufficient energy reserves which can be used for engaging in the community, which includes social participation with others.

3. Subparagraph 34(1)(b) of the Act is satisfied.

Subparagraph 34(1)(c): Does the hydrotherapy pool represent value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support.

1. The Agency submits that there are alternative options for hydrotherapy for Ms Spires located at various swimming pools in the community and that s34(1)(c) of the Act is not satisfied.[115] This submission relies on the evidence of Ms Lewis and her references to a number of local swimming pools. One facility is the EPP, less than one kilometre from Ms Spires’ home which Ms Lewis proposes Ms Spires would be able to walk to in 18 minutes, with her wheelchair being pushed by a support worker if required.[116] Both KS and Mr Snell were adamant that Ms Spires would be unable to complete a return journey to the EPP and I accept their evidence. I also accept the evidence of KS in relation to the effort required to access this swimming pool despite being driven.[117]

   [115] Respondent’s Outline of Submissions dated 9 December 2022, at [26].

   [116] Transcript, page 9 at line 2.

   [117] Transcript, page 34 at line 31 to page 35 at line 15.

2. Ms Lewis’ opinion relies on a ‘tabletop’ review of the documentation provided to her. It was also subject to many assumptions and a number of limitations including the following:

   • She has never met or assessed Ms Spires;

   • She was unable to consider Ms Spires home environment including the hydrotherapy pool installed at her home;

   • Her suggestion of various alternative options of local swimming pools was based on ‘online searches’;

   • She has never visited any of the suggested swimming pools so as to be able to consider the suitability of each facility having regards to Ms Spires’ needs and disabilities.

3. Ms Lewis’ evidence carried little weight and I am satisfied that the hydrotherapy pool installed at Ms Spires’ home represents value for money. I am also satisfied that the cost of the purchase and installation of the hydrotherapy pool is reasonable having regard to the benefit it provides to Ms Spires and further as compared to the alternative hydrotherapy facilities. In this regard my considerations are as follows:

   • All alternative options for hydrotherapy are in the community and require that Ms Spires to:

   •   travel to and from these facilities in order the access hydrotherapy,

   •   be accompanied by two other persons; one person is required to be in the swimming pool with her at all times and another to remain with her companion dog, and

   •   commit to a specific day and time for hydrotherapy, without regard to whether she is in fact well enough to undertake hydrotherapy. In the event she is too unwell for hydrotherapy the costs of the arrangements with support workers and transport are wasted;

   • Travelling to public facilities exhausts Ms Spires to the extent it compromises her ability to undertake hydrotherapy effectively and beneficially. It also exhausts her to the extent she is virtually unable to undertake any other activity for the remainder of the day;

   • Ms Spires has significant skin sensitivity to the chlorine in public pools and has historically developed hives and rashes. Access to the bathrooms and toilet in a public facility is also problematic given her companion dog is required to accompany her at all times. The floors in public facilities are also often wet, slippery and uneven and pose a risk to Ms Spires who struggles with co-ordination and clumsiness;

   • Ms Spires is regularly approached by members of the community at public swimming pools who wish to engage with her companion dog. Ms Spires has ASD and finds this highly distressing. This affects her ability to focus on hydrotherapy. It also compromises the level of vigilance of her companion dog to monitor the likelihood of her having a seizure or fainting;

   • Ms Spires vomits regularly, and this of itself compromises a public swimming pool particularly if she were to vomit whilst in the water;

   • The loud noises at public swimming pools exacerbate Ms Spires’ sensory overload sensitivity and cause her significant stress and anxiety; and

   • It is uncertain as to whether the local public swimming pools will remain open throughout the year as there is a discretion for them to close at certain times of the year.

4. The benefits of a hydrotherapy pool in Ms Spires’ home mean that:

   • Ms Spires has the flexibility to exercise more regularly and when she is feeling well enough to do so;

   • She can access the hydrotherapy pool independently and without assistance.[118] This opportunity for independence is a significant benefit for Ms Spires who has limited opportunities for independence from her parents, carers and allied health professionals. This opportunity should be valued and encouraged;

   • A hydrotherapy pool in her home caters for the volatile and unpredictable nature of her medical conditions;

   • There is no need for the cancellation of arrangements made with carers and the ‘wasting’ of carer fees when Ms Spires is too unwell for hydrotherapy;

   • When Ms Spires is too unwell for hydrotherapy she does not necessarily loose the opportunity for hydrotherapy on that day. Having the hydrotherapy pool at home means that she can exercise at another time of the day or evening when her condition may have improved;

   • The hydrotherapy pool is portable and can be relocated should Ms Spires choose to live in another home;

   • The water temperature of the hydrotherapy pool can be varied. This benefits Ms Spires who has difficulty regulating her body temperature;

   • Ms Spires does not need another person to be in the hydrotherapy pool with her.  She can access the hydrotherapy pool independently provided that KS remains nearby. This reduces the costs of funding supports, as compared to the requirements for two people to accompany her to a public swimming pool at all times;[119] and

   • The benefits of regular hydrotherapy in the hydrotherapy pool have already been evidenced with improved exercise tolerance, the fact her heart surgery is no longer considered urgent and that for the first time in years she has felt well enough to access the community and engage with friends.

   [118] NDIS (Supports for Participants) Rules (‘NDIS Rules’), rule 3.1(f).

   [119] NDIS Rules, rule 3.1(c).

5. I consider the evidence supports that the hydrotherapy pool has significantly improved the outcomes for Ms Spires and will continue to be of long-term benefit to her.[120]

   [120] NDIS Rules, rules 3.1(a) and (b).

6. I agree with the opinions of Ms Green and Mr Snell that the option of travel to a public pool for hydrotherapy is unsuitable and not cost effective.[121] In accepting Mr Snell’s recommendation for hydrotherapy 3-4 days each week the following costs to attend a public swimming pool for hydrotherapy are relevant:

   • The admission fee for Ms Spires and the two people who must attend with her, one to assist with hydrotherapy and the other to remain with her companion dog whilst she in the swimming pool;

   • Assuming KS would attend as Ms Spires’ full-time carer and remain with her companion dog, there remains the cost of a suitably qualified person to be in the swimming pool with Ms Spires at all times to assist with hydrotherapy; and

   • Transport costs to the public swimming pool including petrol and car maintenance.

   [121] T11.

7. Mr Snell’s opinion is that the ‘minimum’ average lifespan of a therapy pool is 15 years.[122] On the basis of a purchase and installation cost of $27,700.00 this equates to an annual approximate cost of $1,813.00 or a weekly approximate of $35.00. Having regard to the costs that would necessarily be incurred and are referred to in [89], I am satisfied that the hydrotherapy pool represents a significantly lower expense than the costs which would be associated accessing a public pool three or four days a week. It also avoids the wastage of costs which must be forfeited should Ms Spires be too unwell to attend a public swimming pool.

   [122] T11.

8. Mr Snell’s opinion on the therapy options for Ms Spires was persuasive. He has treated Ms Spires for a number of years. He is therefore acutely aware of her functional limitations and the suitability of the alternative facilities in the local area, in the context of careful assessment. I have therefore formed the view that a hydrotherapy pool in Ms Spires’ home is the only facility that can achieve the outcome of regular exercise for Ms Spires and that it does so at a much lower cost than any proposed alternatives.

9. There was no evidence before me of the comparative cost of purchasing or leasing a hydrotherapy pool or whether there are any expected changes in technology relevant to Ms Spires.[123] 

   [123] NDIS Rules, rule 3.1(d).

10. Subparagraph 34(1)(c) of the Act is satisfied.

Subparagraph 34(1)(d): Will the hydrotherapy pool be, or is it likely to be, effective and beneficial for Ms Spires having regard to current good practice.

1. The Agency submits that the hydrotherapy pool is not consistent with good practice and that s34(1)(d) of the Act is not satisfied.[124] This submission is made despite there being a consensus opinion on the benefits of the hydrotherapy pool by Mr Snell, Ms Green and Dr Stephen Pavia, Ms Spires’ cardiologist.

   [124] Respondent’s Outline of Argument dated 9 December 2022 at [26].

2. The joint opinion of Ms Green and Mr Snell refers to a trial of the hydrotherapy pool before its purchase and installation and the benefits identified at that point in time. This joint opinion described the hydrotherapy pool as providing Ms Spires with the ability

   “to safely perform resistance-based movements, body weight-based movements, safely challenge her baseline strength, muscular endurance and cardiovascular system, work on her joint mobility and general flexibility, beginning further developing her co-ordination, all essential in ADL’s and progressing, long term, to greater activity in the wider community.”[125]

   [125] T11, at page 115.

3. Reference is also made in the joint opinion to two pieces of published and referenced literature which support the positive benefits of exercise which include benefits in respect of stress and anxiety and the ability to perform the activities of daily living.[126]

   [126] T11, Mikkelsens, K., Stojanovska, M, & Polenakovic, M., 2017, Exercise and Mental Health, Maturitas, Vol 106, pp 48-56; Chiung-ju, L., Keith, N., & Clarke, D. (2017), Promoting ADL Independence in Vulnerable, community dwelling Adults, Clinical Intervention Aging, Vol 12, pp 1141-1149.

4. Dr Stephen Pavia, cardiologist, in correspondence acknowledged and supported the hydrotherapy pool as an intervention which ‘would be extremely important to maintain what strength and muscle tone she has remaining at this time.’[127]

   [127] T1F.

5. The evidence of KS is that the benefits of the hydrotherapy pool have subsequently been confirmed by Dr Pavia in his recent assessment of Ms Spires.

6. Mr Snell also gave evidence of a quantitative measure of significant improvement in Ms Spires’ exercise tolerance since its installation from 5 minutes to 25 minutes.

7. I’m satisfied that the evidence overwhelmingly establishes that hydrotherapy pool has been proven as an effective and beneficial support for Ms Spires having regard to current good practice.

8. Subparagraph 34(1)(d) of the Act is satisfied.

Subparagraph 34(1)(e):  Will the funding or provision of the hydrotherapy pool take account of what it is reasonable to expect families, carers, informal networks and the community to provide.

1. KS gave up work to become Ms Spires full-time carer. She has a hope of one day returning to the work force should Ms Spires become more independent. Mr Snell refers to Ms Spires’ parents experiencing a significant level of stress and caregiver strain in relation to her ongoing needs.[128] Ms Green measured a care-giver strain index of 9 where a score of 7 or higher indicates a significant level of stress.[129]

   [128] A1.

   [129] T1C.

2. Ms Spires requires support 24 hours per day and cannot be left alone.[130] She is unable to access the community on her own and cannot drive. She fatigues easily and often requires assistance to mobilise into a wheelchair. KS assists her with grooming, doing buttons and belts, mobilising from her wheelchair to the toilet and cutting up food. Ms Spires is prone to fainting and a parent is required to be nearby when she is toileting and showering.  She requires verbal and physical prompting to take medication. Her parents manage her finances and provide regular assistance with meal preparation, making her bed and shopping. Ms Spires is unable to assist with any cleaning tasks in the family home, including her own washing and ironing. Ms Spires’ father works remotely and as such KS has the primary responsibility for the care and support of Ms Spires. It is clearly apparent that this is a significant and time-consuming responsibility for KS.

   [130] T1C

3. The therapy pool provides KS with ability to be inside the family home and near to the hydrotherapy pool when Ms Spires is using it. KS described the scenario where she is able to be in the lounge room, and still be able to see Ms Spires in the hydrotherapy pool. She is also able to sit nearby Ms Spires and have a cup of tea during what I consider and agree would be well-earned break.[131] Given the intensity and level of support that is provided particularly by KS in the context of an assessment of a high level of carer-giver strain, I consider that the hydrotherapy pool provides KS with some level of respite, albeit for a brief period of time, from what must be an exhausting role.

   [131] Transcript page 14 lines 44- 46, Page 36 line 47.

4. Subparagraph 34(1)(e) of the Act is satisfied.

Subparagraph 34(1)(f): Is the therapy pool appropriately funded or provided through the NationalDisability Insurance Scheme.

1. The Agency submits the hydrotherapy pool is not appropriately funded under the scheme and that nearby public swimming facilities are the appropriately funded facilities for Ms Spires to undertake hydrotherapy. As such the Agency’s position is that s34(1)(f) of the Act is not satisfied.[132]

   [132] Respondent’s closing submissions dated 9 December 2022 at [26].

2. There is no doubt that there are a number of public swimming pools within the vicinity of the Ms Spires home. Mr Snell’s opinion is that whilst these facilities are suitable for many people with disability, they are not suitable for Ms Spires due to the volatile and unpredictable nature of her medical conditions. I am persuaded by Mr Snell and I accept his opinion and reasoning. KS also provided evidence in relation to Ms Spires’ limitations in accessing public swimming pools for hydrotherapy, which was logical, reasonable and persuasive. A hydrotherapy pool funded under the scheme is in my view entirely appropriate. The nearby public swimming pools are simply not suitable for Ms Spires’ needs having regards to the nature of her disabilities. Hydrotherapy exercise 3 to 4 times each week is essential therapy for Ms Spires, and this level of exercise cannot be achieved utilising public facilities for reasons already outlined. Finally, I do not consider it reasonable to expect Ms Spires or her parents to fund a therapy pool.

3. Subparagraph 34(1)(f) of the Act is satisfied.

Subparagraph 34(2): The general criteria for supports.

1. The general criteria in relation to whether a support will be provided are contained in Part 5 of the NDIS Rules as referred to in these reasons at [13].

2. The Agency contends that:

“Funding for a pool or a spa is a cost which many Australians may choose to purchase themselves”.[133]

On this basis, such funding is considered to be a day-to-day living cost.

[133] T1A.

1. The Agency also characterises the support as a ‘swim spa’ and submits that its installation in Ms Spires’ home is a luxury and primarily to meet her own convenience. The Agency further refers to the Operational Guidelines which provide that funding generally will not be provided for:

   “swimming pools and spas, including hydrotherapy”.

2. The Agency further submits, that the purpose of the Act is not to elevate a person into a special category beyond that of other members of the community, so as to satisfy their every want.[134]

   [134] Respondent’s Outline of Submissions, page 2 at [6]; MDCT and National Disability and Insurance Agency [2022] AATA 697 at [62].

3. My considerations in respect of these submissions are as follows:

   • Ms Spires is affected by multiple medical conditions that impact significantly on her independence and ability participate socially in the community. The disabilities affecting her are referred to in these reasons at paragraph [43].

   • I do not accept the categorization of this support as a ‘swim spa’. I am satisfied that the funding Ms Spires seeks relates to a ‘hydrotherapy pool’ with a primary purpose of hydrotherapy. I am also satisfied that regular hydrotherapy is the most appropriate exercise for Ms Spires and has already proven beneficial.  Without the benefit of the hydrotherapy pool in her home the recent improvements in Ms Spires’ exercise tolerance, general health and well-being would not have been achieved. It is essential to Ms Spires’ health and wellbeing that she exercise 3 to 4 times per week. If she does not, the limited strength and muscle control that she has will diminish further.[135] She will also be affected by reduced joint mobility. A hydrotherapy pool for Ms Spires is not ’whim’, a simple ‘want’ or a regular daily living cost. It is an essential support for Ms Spires and directly related to her disability. It provides her with access to essential and regular physical therapy. It has already provided significant benefits in her energy, health and well-being, facilitated her goal of developing a level of independence from her parents and allowed her to engage in social participation in the community for the first time in years.

   • Ms Spires is significantly affected by low energy levels, constant fatigue and hypermobility of her joints. Compounding factors also include dizziness, fainting and regular vomiting. These factors make it impossible for her to attend public swimming pools for hydrotherapy safely and regularly. Arrangements are regularly and invariably cancelled in the context of the volatile and unpredictable nature of her conditions. In these circumstances funding is effectively wasted. On the days that she is able to manage hydrotherapy at a public facility she is then rendered so exhausted she is unable to engage in any other activity for the remainder of the day. This includes her ability to access the community for social participation. Being reliant on a public facility for hydrotherapy means that on any given day Ms Spires must ‘choose’ between hydrotherapy and other activities such as accessing the community for social participation or the simple activities of daily living within her own home.

   • Public swimming pools generally provide a suitable facility for a large proportion of the community affected by a disability to access hydrotherapy. This is why the Operational Guidelines state that funding ‘generally’ will not be provided.[136] Ms Spires, however, falls into a sub-category of persons affected by a disability of which proximity to a public swimming pool does not resolve the issue of access hydrotherapy. On this basis I consider that deviation from the Operational Guidelines is appropriate and warranted. Ms Spires has limited ability to exercise any level of independence whatsoever in her life. A hydrotherapy pool in her home does however provide her with a level of independence in relation to hydrotherapy and this should be promoted and encouraged. There is no opportunity for any level of independence using a public swimming pool facility for hydrotherapy. A hydrotherapy pool in her home means that Ms Spires can access consistent and regular hydrotherapy which is essential for her health and well-being in the context of her disabilities. Maintenance of her health and well-being should be promoted and supported as it directly affects Ms Spires’ ability to feel well enough to participate in the community.[137]

   [135] T1F.

   [136] NDIS Operational Guidelines (Home modifications), page 3.

   [137] Section 3(1)(c)-(g) NDIS Act.

CONCLUSION

1. For the reasons set out above, I am satisfied that funding of a hydrotherapy pool for Ms Spires is a reasonable and necessary support within the meaning of section 34(1) of the Act.

DECISION

1. The decision under review is remitted to the Agency with the direction that the ‘statement of participant supports’ in the plan dated 11 August 2021 include, as a reasonable and necessary support, funding for reimbursement for the costs of the installation of a hydrotherapy pool in Ms Spires’ home in the sum of $22,700.00.

2. In respect of the costs relating to the maintenance and running of the hydrotherapy pool limited evidence was provided at the hearing.[138] Accordingly, as an expectation I propose that these reasonable costs be considered and also funded by way of reimbursement by the Agency to Ms Spires. 

   [138] T11.

I certify that the preceding 116 (one hundred and sixteen) paragraphs are a true copy of the reasons for the decision herein of Senior Member Joanne Collins

………………[SGD]..……………..

Senior Member Joanne Collins