Markaboui and National Disability Insurance Agency
[2021] AATA 1632
•8 June 2021
Markaboui and National Disability Insurance Agency [2021] AATA 1632 (8 June 2021)
Division:National Disability Insurance Scheme Division
File Number(s): 2017/7729
Re:Fouady Markaboui
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Deputy President J W Constance
Date:8 June 2021
Place:Sydney
The reviewable decision made 8 November 2017 is set aside and the matter is remitted for reconsideration with the recommendation that the National Disability Insurance Agency fund an assessment of the suitability of hydrotherapy for Ms Markaboui’s condition and the likely cost of the treatment should it be found to be suitable.
...............................[SGD].........................................
Deputy President J W Constance
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – voice and composition classes – hydrotherapy – education related expenses – spinal muscular atrophy – therapeutic value – value for money – application of National Disability Insurance Scheme Rules – where Tribunal not satisfied the requested voice classes will be effective and beneficial to the Applicant having regard to current good practice – where Tribunal not satisfied composition classes most appropriately funded through the Scheme – where Tribunal satisfied assessment of suitability of hydrotherapy appropriate – where Tribunal not satisfied educational expenses most appropriately funded through the Scheme – decision set aside and remitted
LEGISLATION
National Disability Insurance Scheme Act 2013 (Cth) ss 33, 34
CASES
McGarrigle v National Disability Insurance Agency [2017] FCA 308
Milburn and National Disability Insurance Agency [2018] AATA 4928
SECONDARY MATERIALS
National Disability Insurance Scheme (Supports for Participants) Rules 2013, r 3.1, 3.2, 3.3, 5.1, 5.2, 5.3, 7.1, 7.2, 7.3, 7.15, 7.16
REASONS FOR DECISION
Deputy President J W Constance
8 June 2021
A. INTRODUCTION
Ms Markaboui has been a participant in the National Disability Insurance Scheme since May 2016. The Scheme was established by the National Disability Insurance Scheme Act 2013 (Cth) and is administered by the National Disability Insurance Agency.
Ms Markaboui is 51 years old. She suffers from Spinal Muscular Atrophy, a rare disease which has caused her complete loss of muscle control of her limbs, except for some movement in her right finger and thumb. Ms Markaboui lives alone and is totally dependent on carers to meet her needs.
Fortunately, several issues previously in dispute between Ms Markaboui and the Agency have been resolved through the Tribunal’s alternative dispute resolution processes. However, there are three supports which Ms Markaboui is seeking to have funded by the Agency which remain in dispute:
·voice and composition classes;
·hydrotherapy; and
·education related expenses.
Ms Markaboui says that the supports she claims are reasonable and necessary and, therefore, should be funded under the Act. These claims will be set out in detail later in these reasons.
Ms Markaboui is asking the Tribunal to review the Agency’s decision made on 8 November 2017.[1] I will refer to this decision as the reviewable decision.
[1] Exhibit R1 at 8.
For the reasons which follow, the reviewable decision will be set aside and the matter will be remitted with a recommendation that the Agency fund an assessment of the suitability of hydrotherapy for Ms Markaboui’s condition and the likely cost of the treatment should it be found to be suitable.
B. OUTLINE OF SCHEME AND RELEVANT PRINCIPLES
I acknowledge submissions of the Solicitor for the Agency in an earlier application to the Tribunal[2] setting out the various provisions of the Act, Rules and Guidelines which provide the framework for determining the matters in dispute in this application. I am grateful for the assistance of those submissions, which form the basis of the content of this Part.
[2] See Milburn and National Disability Insurance Agency [2018] AATA 4928.
Preparation of a participant’s plan
The Chief Executive Officer of the Agency is required to facilitate the preparation of a participant’s plan.[3] The plan must include:
·the participant’s statement of goals and aspirations; and
·a statement of participant supports prepared with the participant and approved by the Chief Executive Officer.[4]
It is to be noted that the statement of goals and aspirations is a statement by the participant and does not require the approval of the Chief Executive Officer. The statement of participant supports must specify the reasonable and necessary supports (if any) that will be funded under the Scheme.
[3] Section 32 of the Act.
[4] Section 33 of the Act.
The provisions of the Act giving the participant alone the right to state his or her goals and aspirations and at the same time requiring the Chief Executive Officer to work with the participant to prepare the statement of supports, and then to approve those supports which will be funded, “strikes a balance between two of the Act’s objects:
(a)the need to enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports, and
(b)the facilitation of a nationally consistent approach to the access to, and planning and funding of, supports for people with disability.”[5]
[5] Milburn and National Disability Insurance Agency [2018] AATA 4928 at [11]; the objects of the Act are set out in section 3 of the Act.
Implementing a plan
The plan comes into effect once the Chief Executive Officer has received the participant’s statement of goals and aspirations and approved the statement of participant’s supports.[6]
[6] Subsection 37(1) of the Act.
Money received by or on behalf of a participant must be spent in accordance with the participant’s plan.[7] An amount paid under the Scheme in respect of reasonable and necessary supports funded in accordance with a participant’s plan is referred to in the Act as the “NDIS amount.”[8]
[7] Subsection 46(1) of the Act.
[8] Section 9 of the Act.
The objects of the Act
The objects of the Act set out in section 3 make particular reference to the purpose of providing reasonable and necessary supports. Subsection 3(1) provides, in part:
The objects of this Act are to:
…
(c) support the independence and social and economic participation of people with disability; and
(d) provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch; and
(e) enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and
(f) facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability; and
(g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community; and
(ga) protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services provided under the National Disability Insurance Scheme; and
(h) raise community awareness of the issues that affect the social and economic participation of people with disability, and facilitate greater community inclusion of people with disability;
…
The objects are to be achieved by “adopting an insurance-based approach, informed by actuarial analysis, to the provision and funding of supports for people with disability.”[9] In giving effect to the objects, regard is to be had to, among other things, “the need to ensure the financial sustainability” of the Scheme and “the provision of services by other agencies, Departments or organisations and the need for interaction between the provision of mainstream services and the provision of supports under the National Disability Insurance Scheme.”[10]
[9] Paragraph 3(2)(b) of the Act.
[10] Subsection 3(3) of the Act.
General principles guiding action under the Act
The determination of the reasonable and necessary supports to be funded under the Scheme is a vitally important function of the Agency. Section 4 provides a set of principles to guide decision-making in respect of this and other functions under the Act.
The following principles are of particular relevance in making decisions as to reasonable and necessary supports:
(1) People with disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development.
…
(3) 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.
(4) People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports.
…
(5) People with disability should be supported to receive reasonable and necessary supports, including early intervention supports.
…
(8) People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.
(9) People with disability should be supported in all their dealings and communications with the Agency and the Commission so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.
…
(11) Reasonable and necessary supports for people with disability should:
(a) support people with disability to pursue their goals and maximise their independence; and
(b) support people with disability to live independently and to be included in the community as fully participating citizens; and
(c) develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.
…
(14) People with disability should be supported to receive supports outside the National Disability Insurance Scheme, and be assisted to coordinate these supports with the supports provided under the National Disability Insurance Scheme.
(15) Innovation, quality, continuous improvement, contemporary best practice and effectiveness in the provision of supports to people with disability are to be promoted.
…
Subsection 4(17) further references the need to ensure the financial sustainability of the Scheme.
Although the phrase “reasonable and necessary supports” is not defined in the Act, its meaning can be determined with the assistance of the provisions referred to above. As the Federal Court said in McGarrigle v National Disability Insurance Agency:
Section 13 expressly indicates that a “support” might be a service, or it might be an activity. In my opinion, although s 14 (which deals with funding by the Agency of others to assist the participant rather than the Agency assisting the participant directly) is expressed purposively, its subject matter is also “support” - whether by way of services of activities or any other matter that assists a person with disability in a way that is consistent with the general principles set out in s 4. The word “support” must be given a broad construction in this context, and there is no need for the purposes of this proceeding to seek to give it any comprehensive meaning. Rather, the point to be made is that it is a practical description of the means by which a person with disability is assisted. It is not intended, in my opinion, to encompass funding, especially because what s 14 contemplates is that the Agency will “fund” a support. The Agency cannot “fund” funding.
…
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”.[11]
[11] [2017] FCA 308 at [88] and [91].
Functions of the Agency
Section 118 of the Act outlines the functions of the Agency, which include supporting the independence, and social and economic participation, of people with disability, enabling them to exercise choice and control in the delivery of their supports, and ensuring that their preferences are respected and given appropriate priority. This section also provides that the Agency is to promote the provision of high quality and innovative supports which maximise independent lifestyles and inclusion in the community of people with disability.
By paragraph 118(1)(b), the Agency has a further function of managing the financial sustainability of the Scheme.
Principles relating to the participation of people with disability
As part of Chapter 3 - Participants and their plans - subsections 17A(1) and (3) provide:
(1) People with disability are assumed, so far as is reasonable in the circumstances, to have capacity to determine their own best interests and make decisions that affect their own lives.
…
(3) The National Disability Insurance Scheme is to:
(a) respect the interests of people with disability in exercising choice and control about matters that affect them; and
(b) enable people with disability to make decisions that will affect their lives, to the extent of their capacity; and
(c) support people with disability to participate in, and contribute to, social and economic life, to the extent of their ability.
Matters which must be taken into account in deciding whether or not to approve a statement of supports
Subsection 33(5) provides:
(5) In deciding whether or not to approve a statement of participant supports under subsection (2), the CEO must:
(a) have regard to the participant's statement of goals and aspirations; and
(b) have regard to relevant assessments conducted in relation to the participant; and
(c) be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d) apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e) have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f) have regard to the operation and effectiveness of any previous plans of the participant.
Matters of which the decision-maker must be satisfied in relation to the funding or provision of supports
Subsection 34(1) provides:
(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.
It is to be noted that all of these conditions must be satisfied in relation to each support.
In McGarrigle v National Disability Insurance Agency the Federal Court said:
Therefore, what is entered in a plan as a support becomes a determinative factor in the administration of the scheme. As the respondent submitted, by s 33(3), supports may be generally described or may be specifically identified. Either way, the function being performed on review by the Tribunal is to approve, vary of modify the supports as set out in a participant plan. In performing that function, the Tribunal must have regard to the matters set out in s 33(5), and form its satisfaction in accordance with s 34.[12]
[12] [2017] FCA 308 at [85].
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
Sections 35 and 209 of the Act provide for the making of rules in connection with the funding or provision of reasonable and necessary, as well as general, supports. I will refer to these rules as the “Supports Rules”. As a Legislative Instrument, the Supports Rules bind the Tribunal in making decisions under the Act.
Part 3 of the Supports Rules provides, in part:
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.
Part 5 of the Supports Rules sets out general criteria for supports and supports that will not be funded or provided:
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.
Supports that will not be funded or provided
5.3 The following supports will not be provided or funded under the NDIS:
(a) a support the provision of which would be contrary to:
(i) a law of the Commonwealth; or
(ii) a law of the State or Territory in which the support would be provided;
(b) a support that consists of income replacement.
The Schedule to the Rules sets out the considerations relevant to determining whether supports are most appropriately funded through the NDIS:
7.1 The Act limits the supports that can be provided or funded under the NDIS to supports that are not more appropriately funded or provided through other service systems, for example as part of a universal services obligation or in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
7.2 The considerations set out in this Schedule must be taken into account by the CEO in deciding whether a support is more appropriately provided or funded by the NDIS or another service system.
7.3 For the avoidance of doubt, while this Schedule sets out considerations relevant to whether a support should be considered to be more appropriately provided or funded through another service system, it does not purport to impose any obligations on another service system to fund or provide particular supports.
…
7.15 The NDIS will be responsible for supports that a student requires which are associated with the functional impact of the student's disability on their activities of daily living (that is, those not primarily relating to education or training attainment), such as personal care and support, transport to and from the education or training facility and specialist supports for transition from education or training to employment that are required because of the person's disability.
7.16 The NDIS will not be responsible for the learning and support needs of students that primarily relate to their education and training attainment (including teaching, learning assistance and aids, building modifications, transport between education or training activities and general education to employment transition supports).
In its judgement in McGarrigle v National Disability Insurance Agency, the Federal Court said, in part:
[The rules] are an important element of the legislative scheme, introducing the ability to modify the operation of ss 33 and 34 by, for example, excluding certain kinds of supports… It is through the Rules that the executive is able to implement, within the federalism constraints imposed in s 209, some policy decision-making about the nature and extent of supports to be provided or funded under the NDIS.[13]
[13] [2017] FCA 308 at [43].
C: THE ISSUES
The following issues require determination.
(1)Are the voice and composition classes requested by Ms Markaboui reasonable and necessary supports which should be funded under the Act?
(2)Are the hydrotherapy sessions requested by Ms Markaboui reasonable and necessary supports which should be funded under the Act?
(3)Are the education related expenses reasonable and necessary supports which should be funded under the Act?
D: REASONING
Issue 1: Are the voice and composition classes requested by Ms Markaboui reasonable and necessary supports which should be funded under the Act?
Evidence of Ms Markaboui
In her undated statement (filed 13 February 2019) Ms Markaboui said, in part:
I definitely want to get back to expressing myself artistically. I have a lot to say and express but right now I’m trapped. A long time ago I worked with a computer at the Joan Sutherland Performing Arts Centre and wrote my own lyrics. I enjoyed expressing myself through the lyrics and the singing was great for my diaphragm muscles. It was better than therapy. So I’d like funding so I can go to voice classes and composition class at the Joan Sutherland Performing Arts Centre.
When she gave evidence, Ms Markaboui said that she would like to pursue a career in the performing arts as a singer and songwriter. In addition, singing is the most effective way to strengthen the diaphragm and throat muscles.[14]
[14] Transcript, 5 March 2020 at 4-5.
Ms Markaboui started training at the Joan Sutherland Performing Arts Centre in 1993 when she was in her early twenties. She studied music literature and composition and was composing melodies and writing lyrics. She continued this study for about three years until she fell ill.
In 2014 Ms Markaboui returned to the Centre and worked with a musician and professional composer for about 11 months.
For a period in October 2014 Ms Markaboui was able to breathe without the assistance of any breathing device for an entire night and day. At the time she was taking a large amount of narcotic drugs which have a severe effect on the respiratory system. For approximately ten years prior to this time she had required the assistance of a breathing device in any one 24 hour period.
Ms Markaboui attributes this improvement to her lung function to the singing lessons she received at the Joan Sutherland Performing Arts Centre during the months prior to October 2014.[15]
[15] Exhibit R2 at 124-130.
Ms Markaboui provided a quotation for the music lessons she wishes to undertake at the Centre. Although it is in respect of the 2019 courses, it is indicative of the cost involved:
In response to Fouady Karkaboui’s (sic) music lessons quote, please find below the formal schedule of fees required to music lessons at Penrith Conservatorium, Joan Sutherland Performing Arts Centre.
Private music lessons with Amanda Handel: Composition
Hourly cost per lesson = $76
No. of lessons in Term 1, 2019 = 11
Compulsory administration cost per term = $10
Total Term 1 fees = $846
Private music lessons with John Hines/Rebecca Hilder/Michelle Foreman: Voice
Hourly cost per lesson = $76
No. of lessons in Term 1, 2019 = 11
Compulsory administration cost per term = $10
Total Term 1 fees = $846
Evidence of Ms Hilder, Singing Teacher
Ms Hilder is a singing teacher at the Performing Arts Centre and a vocal tutor at Western Sydney University. She holds a Bachelor of Music Education and a Diploma of Opera.
Ms Hilder provided a statement dated 7 February 2020[16] and gave oral evidence at the hearing.
[16] Exhibit R2 at 79.
In her report Ms Hilder stated, in part:
Fouady has already shown herself to be responsive to vocal developmental concepts, and has experienced a significant physical increase in singing ability and stamina. Further lessons can only work to develop Fouady into a commercially viable singer-songwriter.
Ms Hilder explained the nature of the training she provided to Ms Markaboui:
We worked on breathing, we worked on use of what we call diaphragmatic breathing in singing, which means we’re concentrating on a greater use of the thorax area in the breathing, greater development of muscles in that area, and we started to also work a little bit on the throat work which is that we have quite a lot of muscles in the throat that we need to be using in a very specific way as singers.[17]
[17] Transcript, 5 March 2020 at 32.
Evidence of Ms Millikan, Occupational Therapist
Ms Millikan assessed Ms Markaboui in late 2018 or early 2019 and provided a report dated 31 January 2019.[18] Ms Millikan gave evidence at the hearing.
[18] Exhibit R2 at 41.
In relation to Ms Markaboui’s request for singing and composition lessons, Ms Millikan reported:
Ms Markaboui has a strong goal to attend voice classes at the Joan Sutherland Performing Arts Centre at Penrith. Her goals are to participate in voice classes, with subsequent goal to participate in composition and recording. She considers that this would be a good use of the Social/Recreation part of an NDIS Plan. From an occupational therapy point of view benefits include respiratory exercise and strengthen of diaphragm and throat and also contributes towards increasing Ms Markaboui’s social activity and opportunities to meet new people and make friends.
To participate Ms Markaboui would require use of a reliable accessible vehicle (accessible taxi), a suitable experienced support worker, accessible bathroom (preferable an adult change facility) and location and space to have a break (quiet area). All her usual scheduled assistance (such as drinks, medications etc) would need to factored into the time away. Considerable research and preparation, plus a trial run of travel and access, would need to occur prior to Ms Markaboui being able to enrol in classes.[19]
[19] Exhibit R2 at 41.
Ms Millikan gave the following evidence at the hearing:
·she was unaware whether vocal physiotherapy (by a trained physiotherapist) is available as a sub-speciality in Australia;
·she was unaware whether singing lessons and vocal physiotherapy offered the same benefits to an individual;
·she was unaware whether there are ways of improving respiratory function other than by singing;
·a Physiotherapist can provide respiratory exercises;
·Ms Markaboui will need to be assessed by a Physiotherapist to determine her suitability for exercises to strengthen her diaphragm and throat;
·as an Occupational Therapist she seeks to find meaningful tasks that people want to do in order to improve function;
·before Ms Markaboui attended the Performing Arts Centre it will be necessary to assess the environment to determine if it is suitable for her.[20]
[20] Transcript, 5 March 2020 at 18-20.
Report of Associate Professor Madill, Speech Pathologist/Voice Specialist
Associate Professor Madill provided a report dated 27 July 2020[21] and gave evidence.
[21] Exhibit R2 at 119.
The report was provided at the request of Ms Markaboui. Associate Professor Madill set out the basis on which her report was prepared:
2) As a formal medico-legal report has not been requested of me, and I was not asked to assess Ms Markaboui, nor provide a professional opinion as to the positive effects of singing on Ms Markaboui specifically, I will present evidence from internationally published peer-reviewed scientific literature and information provided to me by Ms Markaboui’s singing teacher Louise Butler and her rehabilitation co-ordinator, Ms Rachel Henderson.[22]
[22] At [2].
Associate Professor Madill reported that “[as] singing involves co-ordination and use of increased air pressures to maintain sound over longer periods of time than speaking, respiratory function measures have been used to measure the benefits of…… singing.”[23]
[23] At [3].
A non-exhaustive literature search by Associate Professor Madill demonstrated an emerging body of scientific evidence that singing has a number of psychological benefits in certain ranges of the population. There is also detailed evidence which shows that singing is related to numerous beneficial physiological changes including “enhanced respiratory muscles and an optimized breathing mode”.[24]
[24] At [7].
Associate Professor Madill was provided with various reports of tests undertaken by Ms Markaboui. Associate Professor Madill reported:
As I am unaware of any other treatments or life circumstances that might influence Ms Markaboui’s lung function I cannot state equivocally that singing lessons were the cause of her increased FEV1 [Forced Expiry Volume in first second] and FVC [Forced Vital Capacity – total air expired].
The requirement to maintain consistent airflow and pressure during singing may influence Ms Markaboui’s performance on FEV and FVC tests.[25]
At the hearing Associate Professor Madill explained that by “equivocally” she meant “unequivocally”.[26]
[25] At [14] and [15].
[26] Transcript, 16 December 2020 at 12.
Associate Professor Madill gave evidence that there are many parallels between functions that occur in singing and those which occur in physical exercise, including greater expansion of the lungs and ribcage and greater recoil of the lungs. Singing also provides exercise for the throat, the same muscles as are used for swallowing.
The following exchange took place between Associate Professor Madill and Counsel for the Agency:
COUNSEL: So in your report you don’t provide an opinion on whether private singing lessons would be a means by which the applicant, as someone with spinal muscular atrophy would be assisted?
AP MADILL: Yes. I’m unable to make that opinion because I don’t have sufficient information to make that - to form an opinion.[27]
[27] Transcript, 16 December 2020 at 11.
Evidence of Ms Butler, Singing Teacher
Ms Butler provided a report dated 11 November 2020[28] and gave evidence at the hearing.
[28] Exhibit A1.
Ms Butler has given singing lessons to Ms Markaboui since 29 May 2020. During that period she observed a “notable increase” in the length of Ms Markaboui’s exhalations.[29]
[29] Exhibit A1 at 2.
Evidence of Ms Mabena, Home Support Worker
Ms Mabena provided a statutory declaration made 17 February 2020[30] and gave evidence at the hearing.
[30] Exhibit R2 at 80.
Ms Mabena has cared for Ms Markaboui and provided her with home support services since April 2018.
In the opinion of Ms Mabena it would benefit Ms Markaboui if she could breathe at night without the assistance of a BiPAP device. When Ms Mabena commences to care for Ms Markaboui at 5:30 am she has to treat Ms Markaboui’s eyes which have become dry and bloodshot as a result of air escaping from the device.[31]
[31] Transcript, 5 March 2020 at 28.
Discussion
After the hearing of this application commenced, I afforded Ms Markaboui significant time to provide further evidence of the therapeutic value of singing lessons in the treatment of her disability.
Having considered the evidence provided by Ms Markaboui, I am not satisfied that either the voice lessons or composition lessons are a reasonable and necessary support in accordance with the Act.
I accept without question that Ms Markaboui would experience benefits from a resumption of both lessons and that she has considerable talent in both fields. However, I must consider the requirements of the Act and Rules.
Counsel referred me to my reasons for decision in Milburn and National Disability Insurance Agency.[32] In that matter I accepted the Agency’s argument that the singing lessons proposed were a recreational activity of a kind which members of the community are required to access privately rather than being funded under the Scheme. However I went on to say that to support the proposition that such lessons should be funded, “the Tribunal would need evidence of, amongst other things, the nature of the lessons, their therapeutic value, and their value for money.”
[32] [2018] AATA 4928 at [65] –[67].
In this application there is evidence of the nature of the lessons. Taking into account the seriousness of Ms Markaboui’s condition I am satisfied that it is likely that singing lessons will strengthen her muscles to some extent, particularly those used for swallowing. I reach this conclusion based on the evidence of Associate Professor Madill.
Paragraph 34(1)(c) – the requirement that “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”
Ms Markaboui referred me to an article by Adam Lewis et al, “Singing for Lung Health – a systematic review of the literature and consensus statement”.[33]
[33] (2016) Primary Care Respiratory Medicine; exhibit R2 at 97-105.
In the article the authors state, in part:
There is an established repertoire of physiotherapy techniques for helping to manage breathlessness in patients with COPD, including postural modification, breathing control, pursed lips breathing and ‘blow as you go’. These improve respiratory muscle and/or lung and airway mechanics, prolonging expiratory time, allowing a reduction in operating lung volumes. Controlling expiration through singing techniques may have analogous effects, being useful when managing and recovering from episodes of extreme breathlessness. Singing may also enhance sputum clearance as both dynamic lung volume and airflow are increased, features present in conventional physiotherapy techniques[34]
[34] Exhibit R2 at 103.
I accept the contention of the Agency that, on the basis of the available evidence, the benefit Ms Markaboui may receive from singing lessons could be provided by physiotherapy, a support funded in her existing plan.
Turning to consider the Supports for Participants Rules, for the reasons stated later in these reasons in relation to the issue of the application of best practice, I am not satisfied that the evidence establishes that singing lessons will substantially improve the life stage outcomes for, and be of long term benefit, to Ms Markaboui (rule 3.1(b)).
Further, the evidence does not show that the voice lessons will reduce Ms Markaboui’s need for other kinds of support (rule 3.1(f)). On the basis of the evidence of Ms Millikan I am satisfied that for Ms Markaboui to attend voice lessons she will need additional carer support and additional transport.
Paragraph 34(1)(d) – the requirement that “the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice”
Associate Professor Madill is best qualified to express an opinion as to the therapeutic value of voice lessons for Ms Markaboui. However, she did not assess Ms Markaboui and did not have details of her medical history or symptomology. She did not have sufficient information to form an opinion on whether singing lessons would assist Ms Markaboui. Further, Associate Professor Madill was not of the opinion that the singing training undertaken by Ms Markaboui in 2014 increased her FEV1 or FVC results.
I accept the contention of the Agency that there is insufficient evidence to enable me to conclude that voice lessons will be effective or beneficial to Ms Markaboui having regard to current good practice. Associate Professor Madill referred to a study involving adults with chronic obstructive pulmonary disease which concluded that “ there was no significant improvement in general quality of life, anxiety, patient activation, breathlessness or inhaler use.” [35]
[35] Exhibit R2 at 120-121.
In the article I have referred to, the authors concluded, in part:
There is a significant risk of multiple forms of bias across the studies with heterogeneous interventions and a limited number of participants …… More information is required in the reporting of the singing exercises and other stages performed within studies to ascertain a potential therapeutic cause of this improved lung function measurements.
……….
For singing classes to become widely accessible to patients with lung disease, the evidence base will therefore need to be robust and be of sufficient quality for it to be included in clinical guidelines. This is not the case at present.
Ms Millikan gave evidence that voice lessons would benefit Ms Markaboui’s breathing. However, she did not say whether she considered such lessons to be in accordance with current good practice.
Composition lessons
Unlike the voice lessons, there is no evidence that composition lessons will assist Ms Markaboui physically. On the basis of the evidence of Ms Markaboui and Ms Hilder, I am satisfied that the provision of composition lessons would assist Ms Markaboui to utilise her skills in this regard on a commercial basis.
Counsel for the Agency referred me to paragraph 34(1)(b) of the Act which provides:
A reasonable and necessary support is one which will assist the participant to undertake activities so as to facilitate the participant’s social and economic participation.
I accept the Agency’s proposition that funding under the Scheme is intended to assist a participant to facilitate economic participation (e.g. by funding transport and carer assistance) but is not intended to fund the economic activity itself.
As referred to earlier in these reasons, Schedule 1 of the National Disability Insurance Scheme (Supports for Participants) Rules 2013 sets out considerations relating to whether supports are most appropriately provided through the Scheme.
Under the heading Higher education and vocational education and training the Rules provide:
7.15 The NDIS will be responsible for supports that a student requires which are associated with the functional impact of the student's disability on their activities of daily living (that is, those not primarily relating to education or training attainment), such as personal care and support, transport to and from the education or training facility and specialist supports for transition from education or training to employment that are required because of the person's disability.
7.16 The NDIS will not be responsible for the learning and support needs of students that primarily relate to their education and training attainment (including teaching, learning assistance and aids, building modifications, transport between education or training activities and general education to employment transition supports).
I am not satisfied that the provision of funding for composition lessons meets the requirements of paragraph 34(1)(f) of the Act that the support is most appropriately funded through the Scheme.
Issue2: Are the hydrotherapy sessions requested by Ms Markaboui reasonable and necessary supports which should be funded under the Act?
Evidence of Ms Markaboui
Ms Markaboui is seeking funding for hydrotherapy to improve her muscular and lymphatic systems. The effects of gravity are reduced during hydrotherapy, allowing her to exercise more effectively.
Report of Dr Lui, General Practitioner
On 27 February 2017 Dr Lui reported, in part:
Fouady will benefit from a physiotherapy and hydrotherapy program, to help with improving her muscle function and help with alleviating her back and joint pains. The physiotherapy would be best performed at home, say one hour every week Attendance at a pool for hydrotherapy would be once weekly, with an allocation of about 3 hours for carer to allow for transport to and from the pool, as well as preparations before and after entering the pool.[36]
[36] Exhibit R1 at 66.
Evidence of Ms Frenopoulo, Physiotherapist
Ms Frenopoulo holds a Bachelor Degree in Applied Science Physiotherapy. She qualified as a physiotherapist in 2008 and has worked with patients in hydrotherapy since 2009. Ms Frenopoulo has treated patients suffering from neuro-muscular disease, including spinal muscular atrophy. It is her experience that exercise is beneficial to patients suffering from the latter condition.
Ms Frenopoulo assessed Ms Markaboui on 2 August 2019 and provided a report dated 16 August 2019.[37] She gave evidence at the hearing.
[37] Exhibit R2 at 67.
Ms Frenopoulo reported, in part:
Fouady was assessed in the clinic at AquaPhys on 2nd August 2019. She only has small active movements to her right index finger and thumb. She is unable to sit unsupported and requires full postural support (head and trunk) to maintain an upright position. Her passive range of motion was limited bilaterally for all movements assessed. She requires a hoist for transfers with a sling also providing head support and two carers.
Fouday (sic) would like to maintain her current abilities and increase her impendence.
An objective assessment of Fouady in the pool was unable to be undertaken as there was no hoist available at the facility, in the bathroom…
Recommendations
Fouady would benefit from weekly Aquatic based Physiotherapy, where she could be supported in the water to allow her some freedom of movement without the restraints of gravity. The Aquatic Physiotherapy would require a carer and physiotherapist in the water at all times to allow Fouady to maintain her current passive range of motion and muscle activation. Fouady has stated that she would require two carers to assist her with preparation to attend and changing after the session, so would require a total of two carers for 3 hours for each Aquatic Physiotherapy session.[38]
[38] At 68.
Ms Frenopoulo prefers to assess prospective patients in the hydrotherapy pool as it allows her to better understand the likelihood of the treatment being effective and the patient’s tolerance of the proposed treatment. Each treatment session usually takes one hour but can be adjusted to meet the needs of the patient. One session per week is usually the most beneficial.
In the opinion of Ms Frenopoulo, hydrotherapy may increase the range of movement in Ms Markaboui’s limbs and the warmth of the pool would lead to the relaxation of her muscles allowing for their greater movement. She was unable to say how long it would take for Ms Markaboui to show improvement but her experience is that hydrotherapy is more effective than the application of heat to specific parts of the body outside a pool. When asked if hydrotherapy would be likely to assist Ms Markaboui’s breathing, she said that patients find it easier to breathe in the moist environment of a hydrotherapy pool and that respiratory exercise improves lung capacity.
The cost of assessing Ms Markaboui’s suitability for the treatment would be the cost of two hours assessment time at standard Scheme rates and the cost of writing the report of $186.00 (being two hours writing time).
Discussion
The Agency contends that, based on the evidence of Ms Millikan that hydrotherapy is likely to cause harm to Ms Markaboui by aggravating her skin conditions, the treatment should not be funded as provided by Rule 5.1(a). However, I am satisfied that the effects of treatment on Ms Markaboui’s skin needs to be further evaluated before the applicability of Rule 5.1(a) can be determined.
The Agency also contends that it has not been shown that hydrotherapy represents value for money relative to the benefit achieved and the cost of alternative support (paragraph 34 (1)(c)). Although not in her report, when she gave evidence Ms Frenopoulo did refer to the benefits of hydrotherapy compared to the application of heat outside a pool environment. However this evidence was not detailed. On the evidence before me I cannot be satisfied that the support requested satisfies the requirement of this subsection.
Thirdly the Agency argues that “there is no evidence that hydrotherapy will be, or is likely to be, effective and beneficial to the Applicant, having regard to current good practice: s 34(1)(d).”[39] As the Agency points out, Dr Liu does not provide detail about how hydrotherapy would assist Ms Markaboui nor does she consider any harmful side-effects. Ms Frenopoulo did provide an opinion as to how Ms Markaboui may be assisted by the treatment but she was unable to carry out a proper assessment of its suitability for Ms Markaboui. On the evidence available to me I cannot be satisfied that the requirements of subsection 34(1)(d) are met.
[39] Respondent’s Statement of Facts, Issues and Contentions dated 27 February 2020 at [95].
Having considered the evidence I am satisfied that it is appropriate that the Agency fund an assessment of the suitability of hydrotherapy for Ms Markaboui’s condition and the likely cost of the treatment should it be found to be suitable. Given the severity of Ms Markaboui’s condition, the evidence so far available suggests that she would benefit from being able to exercise in a warm environment in which the effects of gravity are reduced. In these circumstances
I recommend that funds be provided to fully investigate the effectiveness for Ms Markaboui of the hydrotherapy proposed by Ms Frenopoulo.
Issue 3: Are the education related expenses reasonable and necessary supports which should be funded under the Act?
In 2018 or 2019 Ms Markaboui was considering resuming her study of journalism. With this in mind, she spoke to the Disability Counsellor at the University of Western Sydney who advised her that she would need additional education aids such as an updated laptop computer and voice recognition software.[40]
[40] Transcript, 5 March 2020 at 58.
When she gave evidence Ms Markaboui was uncertain as to the actual equipment she would need and the additional support she would require to enable her to study at a tertiary level. In any event she now would prefer to pursue a career in music.[41]
[41] Transcript, 5 March 2020 at 59.
In these circumstances I cannot be satisfied of the nature of the education related expenses sought by Ms Markaboui and therefore cannot be satisfied that the expenses relating to additional technology meet the requirements of section 34 of the Act.
As always, Ms Markaboui is able to renew her request for funding under the Scheme at any time.
E: CONCLUSION
The reviewable decision made 8 November 2017 will be set aside and the matter will be remitted for reconsideration with the recommendation that the National Disability Insurance Agency fund an assessment of the suitability of hydrotherapy for Ms Markaboui’s condition and the likely cost of the treatment should it be found to be suitable.
I certify that the preceding 91 (ninety -one) paragraphs are a true copy of the reasons for the decision herein of Deputy President J W Constance
.................................[SGD].......................................
Associate
Dated: 8 June 2021
Date(s) of hearing: 5 March 2020, 16 December 2020 Applicant: In person Counsel for the Respondent: C Trahanas Solicitors for the Respondent: C Broad, National Disability Insurance Agency
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Statutory Interpretation
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Judicial Review
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