Tralongo and National Disability Insurance Agency

Case

[2023] AATA 447

21 March 2023


Tralongo and National Disability Insurance Agency [2023] AATA 447 (21 March 2023)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Number(s):      2020/6779

Re:Maria Luisa Tralongo

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

Decision

Tribunal:Member I Thompson

Date:21 March 2023

Place:Adelaide

For the reasons set out below, the Tribunal decides that the reviewable decision is affirmed.

.............[Sgnd]..........................................

Member I Thompson

Catchwords

NATIONAL DISABILITY INSURANCE SCHEME – access to the scheme – disability requirements – early intervention requirements – consideration of medical history – Churg Strauss disease – permanency – available treatments – remedy for impairments – decision affirmed

Legislation

National Disability Insurance Scheme Act 2013 (Cth) National Disability Insurance Scheme (Becoming a Participant) Rules 2016

Cases

FBJV & National Disability Insurance Agency [2021] AATA 913

Jourifan and National Disability Insurance Agency [2020] AATA 1883

MRLK and NDIA [2021] AATA 913

Mulligan v National Disability Insurance Agency (2015) FCA 544

National Disability Insurance Agency v Davis [2022] FCA 1002

Timofticiuc and National Disability Insurance Agency [2021] AATA 3015

XMFS and National Disability Insurance Agency [2022 AATA] 568

Secondary Materials

National Disability Insurance Scheme – Operational Guidelines – Access

REASONS FOR DECISION

Member I Thompson

21 March 2023

INTRODUCTION

  1. The Applicant, Ms Tralongo, made an access request to the National Disability Insurance Agency (the Agency) to become a participant in the National Disability Insurance Scheme (NDIS) on 18 May 2020.[1]

    [1] T-documents T11 p 43

  2. In Ms Tralongo’s request for access to the NDIS her primary impairment was recorded as Churg Strauss disease from 2008, and other impairments were listed as diabetes myelitis from 2015 and cardiac arrhythmia.[2]

    [2] T-8 p 33

  3. The Agency declined the request by letter dated 17 August 2020, on the basis that Ms Tralongo did not have an impairment which is permanent or likely to be permanent.[3] Ms Tralongo sought an internal review of that decision, which was subsequently affirmed by a delegate of the Agency on 28 October 2020.[4] It was noted that Ms Tralongo met the age and residency criteria set out in sections 22 and 23 of the National Disability Insurance Scheme Act 2013 (NDIS Act), however it was decided that she did not meet the disability or early intervention requirements in sections 24 and 25 of the NDIS Act.

    [3] T12 p 51

    [4] T1 p 9

  4. Ms Tralongo applied to the Tribunal for review of that decision. In her written application Ms Tralongo claimed that the Agency’s decision about access was wrong and that a different decision should be made. She has a rare chronic disease, Churg Strauss, which she described as inflammation of her blood vessels which attack her vital organs. The side effects of medication have resulted in diabetes type II, irregular heartbeats and numbness in her hands and legs.[5]

    [5] Application for Review of Decision, 2 November 2020

  5. Ms Tralongo was 64 years old when she applied to become a participant in the NDIS. She is now 67. She resides alone in a regional city in South Australia.

    ISSUE

  6. The issue for the Tribunal to determine is whether Ms Tralongo meets the requirements for access to the NDIS. In order to qualify as a participant in the NDIS, an applicant must meet the criteria outlined in s 21 of the NDIS Act. The Agency was satisfied that Ms Tralongo meets the age and residency criteria, which are outlined in ss 22 and 23 of the NDIS Act. The age requirements include a provision that a person is aged under 65 when an access request was made.

  7. Specifically, the Tribunal must determine whether Ms Tralongo meets the disability requirements under s 24 of the NDIS Act, or the early intervention requirements under s 25 of the NDIS Act.

    THE HEARING

  8. The audio-visual hearing in the Tribunal took place on 27 April, 28 April and 26 July 2022. Ms Tralongo was self-represented by choice. Similarly, Ms Tralongo had represented herself at directions hearings during the course of the matter. Throughout her presentation of her case, she made it clear that she understood the processes for seeking independent advocacy and support services for applicants in NDIS hearings conducted by the Tribunal. Consistently, she maintained her right and preference to represent herself. The Agency was represented at the hearing by counsel, Mr Schatz.

  9. Ms Tralongo gave audio-visual evidence from home. The Agency arranged for an assessment on the papers by Professor Paul Gatenby, who is a consultant physician in clinical immunology and an immunopathologist. The Agency also arranged for an occupational therapy assessment of Ms Tralongo, which was conducted by Ms Julia Parini. Both Professor Gatenby and Ms Parini gave audio-visual evidence at the hearing. Dr Walker (now Associate Professor) also gave evidence by video. She is a consultant rheumatologist, who provided specialist medical oversight and care to Ms Tralongo for several years. The Tribunal received in evidence a vast quantity of documents which comprised numerous medical reports, medical notes, allied health reports, letters, forms and other documents. The medical records and allied health records and associated material date back to 2008.

    LEGISLATIVE FRAMEWORK

  10. The NDIS comprises coordination, strategic and referral services or activities, funding to persons or entities to assist the participation of people with disability in economic and social life, and funding through individual plans for reasonable and necessary supports for participants in the NDIS.[6]

    [6] NDIS Act s 8

  11. It is important to note the comments of the Federal Court (per Mortimer J) in Mulligan v NDIA, at [34]:

    It is clear from the legislative scheme that the decision whether a person is or is not a participant is the threshold decision under the scheme, and the decision which enables access to most benefits and funding available under the NDIS. However, what benefits and supports are provided, and how they are funded is subject to a separate decision-making process.[7]

    [7] (2015) FCA 544 at [34] per Mortimer J

  12. The question whether an applicant satisfies the access criteria to become a participant in the NDIS involves a consideration of the following questions:

    a)Does the applicant have a disability that is attributable to one or more intellectual, cognitive, neurological, sensory, or physical impairments, or one or more impairments to which a psychosocial disability is attributable, within the meaning of section 24(1)(a) of the NDIS Act?

    b)Are the impairment or impairments likely to be permanent within the meaning of section 24(1)(b) of the NDIS Act?

    c)Have the impairment or impairments resulted in substantially reduced functional capacity to undertake relevant activities within the meaning of section 24(1)(c) of the NDIS Act?

    d)Do the impairment, or impairments, affect the applicant’s capacity for social or economic participation within the meaning of section 24(1)(d) of the NDIS Act?

    e)Is the applicant likely to require support under the NDIS for their lifetime within the meaning of section 24(1)(e) of the NDIS Act?

    f)Does the applicant meet the early intervention requirements within the meaning of section 25 of the NDIS Act?

  13. The criteria in each of the sections 24(1) and 25(1) of the NDIS Act are cumulative. Accordingly, all of the requirements in either of those sections of the NDIS Act must be satisfied to enable a person to become a participant in the NDIS.

  14. Under s209 of the NDIS Act, the Minister has made rules about becoming a participant in the scheme. The National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (the NDIS Rules) are relevant to this case. The NDIS Rules form part of the legislation.

  15. The CEO of the NDIA has made an Operational Guideline for staff in exercising their functions under the NDIS Act. The National Disability Insurance Scheme – Operational Guidelines – Access provides information and guidance regarding the disability requirements (s 8) and the early intervention requirements (s 9), and will be referred to later in this decision.

    CONTENTIONS

  16. In its statement of issues, facts and contentions prior to the hearing, the Agency accepted that the disability requirement in s 24(1)(a) of the NDIS Act is met in relation to Ms Tralongo having a disability attributable to Churg-Strauss Vasculitis, which is also known as eosinophilic granulomatosis polyangiitis (EGPA). The Agency did not accept that she has a disability attributable to diabetes or to asthma.[8]

    [8] Respondent's Statement of Facts, Issues and Contentions, paragraphs 79, 80

  17. Next, the Agency contended that the Tribunal should not be satisfied that the requirements of s 24(1)(b) of the NDIS Act are met in relation to permanency of Ms Tralongo’s “relevant conditions”, namely, EGPA, diabetes myelitis, asthma, cardiac arrhythmia and dilated cardiomyopathy.[9]

    [9] As above paragraphs 81-92

  18. The Agency did not accept that there is sufficient evidence to be satisfied that Ms Tralongo has an impairment or impairments that result in a substantially reduced functional capacity to undertake any of the activities specified in s 24(1)(c) of the NDIS Act.[10] Further, it was contended that if impairments which are claimed to have resulted in reduced functional capacity are not permanent, the Tribunal should not attempt to assess the criteria regarding reduction in functional capacity set out in s 24(1)(c).[11] In support of that contention, it was suggested that, for example, fatigue or breathlessness which Ms Tralongo experiences could improve when her EGPA or other relevant conditions are adequately treated.

    [10] As above paragraph 95

    [11] As above paragraphs 104–106

  19. The Agency accepted that s 24(1)(d) is met for an impairment only from EGPA that affects Ms Tralongo’s capacity for social or economic participation.[12]

    [12] As above paragraph 3.4 and 4.1

  20. The Agency contended that the lifetime support requirement under s 24(1)(e) of the NDIS Act is not met. That is because the requirement for permanence in s 24(1)(b) is not met.[13] It was submitted that Ms Tralongo’s health conditions are properly addressed through the health system in relation to any requirements for clinical treatment, allied health services, therapies or other treatments. In any event, it was contended that there is insufficient evidence to support a finding that Ms Tralongo is likely to require support through the NDIS for her lifetime.

    [13] As above paragraphs 107–113

  21. The Agency contended that Ms Tralongo does not meet the early intervention requirements in s 25 of the NDIS Act, noting that many of her conditions are chronic over several years and the treatment for EGPA commenced in 2008. It was contended that there is insufficient evidence that the provision of early intervention supports is likely to benefit Ms Tralongo in the ways that are specified in s 24(1)(b) and (c), and even if there was sufficient evidence in that regard, nonetheless Ms Tralongo’s conditions are health conditions which would ordinarily be addressed through the general health system.[14]

    [14] As above paragraphs 107–120

  22. Ms Tralongo did not provide a written statement of contentions in reply, and she relied upon her oral submissions and evidence at the hearing .She had provided an email dated 20 April 2022, in which she commented that “…this rare chronic disease has no cure, I have to stay on steroids for life, the specialist Dr Walker was suggesting to change to cancer drugs, which side effects are liver cancer, which she said may not happen, plus I still have to stay on low steroids. I had all the side effects of all my drugs, do not want to die of cancer any cancer. She is upset with me. I am a guiney [sic) pig with this disease? Doctors said there is no cure. America, Baltimore, are investigating it, to get a cure one day.”

    EVIDENCE

    Medical evidence

  23. Much of the documentation refers variously to the condition of Churg-Strauss Vasculitis, or EGPA, and through degrees of necessity and convenience its name is used interchangeably in this discussion.

  24. Emeritus Professor Gatenby, at the Australian National University Medical School, provided written and oral evidence by video. His professional expertise is in clinical immunology and immuno-pathology. He has worked in clinical practice and in research with a focus on chronic inflammatory diseases, including many forms of vasculitis. He provided written reports at the request of the Agency’s solicitors, having been provided with the medical reports and documents regarding Ms Tralongo’s medical history. He noted that Ms Tralongo presented to the Flinders Medical Centre in 2008 with features consistent with Churg-Strauss Vasculitis, which is now called eosinophilic granulomatous polyangiitis, or EGPA. It is a disease which includes damage to small blood vessels, with a persistently high eosinophil count. He explained that eosinophils are toxic in themselves and damage tissue. The disease is described variously as serious and severe.

  25. Associate Professor Walker is a visiting rheumatologist to the Flinders Medical Centre. Ms Tralongo’s care was transferred to her clinic – the rheumatology clinic of the Flinders Medical Centre – for management of her EGPA in 2011. Numerous reports and letters from Associate Professor Walker were included in the documentary material which was received in evidence. In addition, Associate Professor Walker gave oral evidence by video at the hearing. She has seen Ms Tralongo on numerous occasions following the first consultation in 2011. However, the last face-to-face consultation occurred on 16 December 2019. Ms Tralongo has not felt comfortable coming to the city since that time. There was a telephone conversation in June 2022 about an abnormal urine test following concern about the disease flaring up again.

  26. In the supporting evidence form[15] for Ms Tralongo’s NDIS access request, Ms Tralongo’s general medical practitioner, Dr Rampatige, recorded Churg Strauss disease as the primary impairment from 2008, which is likely to be lifelong, and diabetes mellitus as another impairment, since 2015, which has a significant impact and is likely to be lifelong. Dr Rampatige did not give oral evidence at the hearing.

    [15] T8 p 33

  27. Dr Rampatige provided additional information[16] to the Agency, in which she referred to Ms Tralongo’s Churg Strauss disease as a permanent auto immune condition. She wrote that there is no identified cure for the disease. She noted Ms Tralongo’s medical issues result in fatigue, leg pains and problems with breathing. Dr Rampatige wrote that Ms Tralongo’s brittle diabetes and asthma are associated with the Churg Strauss disease. She noted that Ms Tralongo needs significant support with activities of daily living that include hygiene, feeding and mobility. In another letter, she described Churg Strauss as a condition which fluctuates, and she noted that Ms Tralongo has atrial tachycardia and dilated cardiomyopathy.[17]

    [16] Supplementary T-documents ST80 p 317

    [17] ST75 p 306

  28. From the time of her initial admission to hospital through to the present time, Ms Tralongo’s Churg Strauss syndrome has been treated with high doses of steroids, with tapering of doses occurring intermittently. They have had extensive side effects. Throughout her treatment, doctors have discussed with Ms Tralongo the benefits of using a steroid sparing agent. They have discussed with her the risks of her long-term use of a steroid medication, namely prednisolone. They have consistently recommended that she reduce the dosage of prednisolone. They have endeavoured to ascertain whether she could reduce her reliance on prednisolone without using a steroid sparing agent. She developed diabetes secondary to her use of prednisolone.[18]

    [18] ST217 p 1057 – letter, Hawkins Medical Clinic, 17 April 2012

  29. The extensive reports, correspondence and notes of Ms Tralongo’s medical history confirm that she was diagnosed with Churg Strauss vasculitis in 2008. She was 52 at that time. She had been admitted to hospital because of pain in her legs, with numbness over the toes on her right foot, shortness of breath and chest pain. A report from the Flinders Medical Centre on 10 April 2008 confirmed the principal diagnosis, together with secondary diagnoses of asthma, depression and normocytic anaemia. The shortness of breath on exertion was attributed to asthma, which had been diagnosed two years previously. Investigations included consultation with the rheumatology team, the cardiology team, the neurology team and the ENT team. She improved clinically on the ward and was discharged after 12 days, with a tapering dose of prednisolone at 50 mg for two weeks, to be reduced by 5 mg every week.[19]

    [19] ST110 p 608

  30. At the age of about 50, Ms Tralongo had developed symptoms of asthma which were difficult to control with standard treatment. For several years she consulted a respiratory physician, Dr Bradbeer, in Hamilton, Victoria. He was corresponding with the Flinders Medical Centre about the treatment which Ms Tralongo was receiving for her Churg Strauss syndrome in the context of the treatment that he was providing for her symptoms of breathlessness and tiredness. He regarded her asthma as a manifestation of Churg Strauss.[20] He left the decisions regarding management of vasculitis to the rheumatology unit at Flinders Medical Centre, and he concentrated on management of asthma and tiredness. As early as 2008 Dr Bradbeer noted that treatment by an immunosuppressive/steroid sparing agent had not yet been introduced for the Churg Strauss syndrome. In April 2010, he suspected that deconditioning was a factor in her exertional breathlessness, rather than asthma, and he suspected that she had obstructive sleep apnoea and, although she was reluctant to have it investigated, he wanted to pursue a diagnostic sleep study.[21]

    [20] ST124 p 630

    [21] ST135 p 646,

  31. In addition to a past medical history of asthma, Ms Tralongo had previous symptoms of nasal obstruction. A report[22] written on 1 May 2008 by an ENT Registrar at the Flinders Medical Centre referred to symptoms of nasal obstruction over the previous 20 years occurring mostly at night. The results of an audiogram indicated very mild, low frequency hearing loss on the left side, with normal hearing on the right side.

    [22] ST115 p 618

    Allied health evidence

  32. At the request of the Agency’s solicitors, Ms Tralongo agreed to an assessment by an occupational therapist, Ms Parini, who wrote a report, together with a supplementary report, following two face-to-face interviews with Ms Tralongo. The assessment was directed to levels of function, with particular reference to the criteria regarding reduction of functional capacity in s 24(1)(c) of the NDIS Act. Ms Parini, who also gave oral evidence, wrote in her first report that she declined to provide responses to questions from the Agency’s solicitors about Ms Tralongo’s treatment, treatment options and the likely outcomes of various treatments. Quite properly, her assessment proceeded on the basis of medical diagnosis and secondary complications, which were reported by Associate Professor Walker, and she noted the conditions of EGPA, vasculitis, asthma, diabetes type 2, obesity, obstructive sleep apnoea, peripheral neuropathy, impaired hearing and osteoporosis.[23]

    [23] Exhibit 8

  33. The first assessment which Ms Parini conducted, on 27 September 2021, lasted for two hours. It included a 90-minute seated interview and a 20-minute functional mobility assessment. Following this initial interview, Ms Tralongo requested that subsequent sessions take place by telephone. Ultimately, a second session was arranged at Ms Tralongo’s nominated location, at a local shopping centre.

    Applicant’s evidence

  34. Ms Tralongo told the Tribunal about her impairments and their impact. She has problems with diabetes, numbness in the hands and legs; she has to lift her left leg with her hand to climb a stair; she has difficulties with mobility, and with hearing on the left side; and problems with excessive weight, shortness of breath, asthma and sleeping. She has tried using masks, without success, to minimise her sleep apnoea. She told the Tribunal about irregular heartbeats and her fatigue. She is endeavouring, with some success, to reduce her weight and improve her mobility. She has tertiary educational qualifications, and she aspires to work in a part-time role.

  1. Ms Tralongo said that she commenced on a dosage of 60 mg of prednisolone when she was first treated in hospital. She acknowledged that there have been continuing discussions with and recommendations from her medical practitioners warning her about the dangers of her use and reliance on prednisolone and her avoidance of steroid sparing agents. She acknowledged that she has been warned about side effects, including weight gain, hypertension and diabetes. She considers that even if she agreed to the advice about steroid sparing agents, she would still need a 5 mg dosage of prednisolone. As she aims to keep prednisolone at about 5 mg anyway, she cannot see the point of using steroid sparing agents. She said her daily dosage of prednisolone is currently 6 mg, and if she is feeling unwell, she may decide to increase the dosage to 13 to15 mg, or even 25 mg, for a few days, perhaps a week. She appears to believe these dosages are within the parameters of medical advice that she receives.

  2. Ms Tralongo gave evidence about her apprehension of getting liver cancer if she accepts the specialist medical advice in addition to other, possible, side effects from steroid sparing agents. Her evidence is that the medical treatment for her condition of EGPA is experimental and that the doctors really don’t know how to treat it.

    CONSIDERATION

    Disability requirements

  3. The concept of impairment, rather than a definition of disability, is central to the threshold provisions of the NDIS Act, such as s 24. In Mulligan, the Federal Court (Mortimer J) pointed out that, while the NDIS Act refers frequently both to “disability”, without defining it, and to “impairment”, without defining it,[24] “the undefined statutory phrase ‘people with a disability’ is not to be construed as limited to people who meet the access criteria in Ch3 of the Act. The access criteria have a number of components and thresholds”.[25] The Court pointed out in Mulligan, at [56]:

    No decision-maker need be satisfied a person’s impairment is “serious”, or more serious than another person’s. No qualitative judgments in that sense are called for. Rather, the legislative scheme is based on a functional, practical assessment of what a person can and cannot do.

    [24] As above (n 7) at [16]

    [25] As above at [18]

  4. Section 24(1)(a) of the NDIS Act provides that a person meets the disability requirements if:

    … the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or the person has one or more impairments to which a psychosocial disability is attributable.

  5. The Tribunal is satisfied, on the evidence, that the concession by the NDIA regarding s 24(1)(a) of the NDIS Act[26] is correct. The Tribunal finds that Ms Tralongo has a disability which is attributable to a physical impairment caused by EGPA.

    [26] Respondent's Statement of Facts, Issues and Contentions, paragraphs 79, 80

  6. The identification of the impairment is fundamental to this part of the review. As the Federal Court pointed out in National Disability Insurance Agency v Davis: [27]

    … what the legislative scheme focuses on is not the name of a person’s disability, nor the diagnosis given to a person – but rather what are the impairments experienced by a person which may require supports so that the person can participate in all aspects of personal and community life. It is the impairment which the scheme contemplates may affect the “functional capacity” of a person.

    [27] [2022] FCA 1002 at [69]

  7. The next step is to decide whether Ms Tralongo meets the requirements regarding permanency.

    PERMANENCE – S 24(1)(b) NDIS Act

  8. S 24(1)(b) of the NDIS Act requires that:

    (b) the impairment or impairments are, or are likely to be, permanent

  9. The provisions in s 24(2) of the NDIS Act address the permanency of impairments that vary in intensity, while ss 24(3) and (4) of the Act deal with episodic or fluctuating impairments.

  10. In Mulligan,[28] the Federal Court referred to requirements of the assessment under s 24(1) of the NDIS Act in this way:

    Using the concept of impairment enables assessment of the severity and permanency of a person’s condition and of the effects of that condition through not only the evidence of an applicant but also medical and clinical evidence.[29]

    [28] Mulligan v National Disability Insurance Agency [2015] FCA 544

    [29] As above at [55]

  11. In deciding whether an impairment is permanent or likely to be permanent for the purposes of the disability requirements of section 24(1)(b), the Tribunal must address the requirements of the NDIS (Becoming a Participant) Rules 2016; in particular, Rules 5.4-5.7, which are recited below, in paragraph 73.

  12. The evidence in this case requires the Tribunal to consider whether there are “any known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment.” (NDIS Rule 5.4)

  13. In Davis, the Federal Court (per Mortimer J) explained the meaning of “permanent” in s 24(1)(b) in this way:

    The phrase “permanent impairment” in s 24(1)(b) means an impairment which is of an enduring nature. In other words, the question for the decision-maker is whether the impairment(s) experienced by an individual (rather than the cause of the impairments or the specific diagnoses made about a medical condition) has or have an enduring quality so as to require supports funded and/or provided under the NDIS Act on an ongoing basis.[30]

    [30] As above (n 27) at [130]

    Medical Treatments

  14. Monitoring and regular reviews at the Flinders Medical Centre in 2008 recorded Ms Tralongo’s use of prednisolone and consistent recommendations that the use be tapered, for example by 5 mg every two weeks. Initially, she was on prednisolone 60 mg. Azathioprine was discussed with her in November 2008; however, she declined to use it. By May 2009, she was using 10 mg of prednisolone, tapered down to 6 mg, which apparently led to an asthma flareup, requiring an increased dose of prednisolone to 25 mg.[31] In fact, steroid side effects were reported as early as 30 July 2008.[32] At that time, she was on 20 mg of prednisolone. It was noted that she had put on weight and developed cushingoid features through steroid use. Those reviews included consistent advice given to Ms Tralongo that if the tapering of steroids was complicated by a relapse, consideration should be given to adding a steroid sparing agent.

    [31] ST126 p 632

    [32] ST117 p 622

  15. Ms Tralongo’s resistance to using a steroid sparing agent was reported, again, as early as January 2009, in a report from the immunology/rheumatology registrar at the Flinders Medical Centre, which noted a discussion with her about starting a steroid sparing agent. However, it was recorded that Ms Tralongo: “has not been keen to use any steroid spurring [sic] agents, including methotrexate or Imuran and will consider this if she relapses while there is a steroid taper.”[33]

    [33] ST121 p 626

  16. Further, in May 2009, a rheumatology registrar reviewed Ms Tralongo’s case notes and spoke with her about previous recommendations for using an immune suppressing steroid sparing agent, such as cyclophosphamide or azathioprine; however, Ms Tralongo: “declined it because of her concern that it would lead to more side effects, in particular, skin cancer.”[34]

    [34] ST127 p 634

  17. Ms Tralongo’s problems with fatigue were addressed at this time. In May 2009, the rheumatology assessment indicated that her Churg Strauss syndrome was under reasonable control with a current dose of prednisolone of 10 mg daily, and the cause of tiredness was probably multifactorial, “including obesity, deconditioning and probably obstructive sleep apnoea, for which she is awaiting a sleep study.”[35] Investigations endeavoured to clarify whether Ms Tralongo’s respiratory symptoms represented persistent and active Churg Strauss vasculitis or residual asthma. The vasculitis had affected her respiratory tract as well as her peripheral nervous system.

    [35] ST126 p 632

  18. Ms Tralongo was receiving consistent advice about prednisolone from the rheumatology clinic at the Flinders Medical Centre during this time. For example, in April 2010, a letter from the rheumatology registrar confirmed that she was reminded of the advice to reduce her prednisolone because of the “associated steroid side effects she is accumulating.” Those side effects were reported as obesity and osteopenia. She was advised about the need to reduce prednisolone and commence steroid sparing therapy. She was reassured that: “the risk of malignancy associated with immunosuppressive medication is small and she will be monitored carefully while on it.”[36]

    [36] ST136 pp 648-9

  19. Ms Tralongo’s care was transferred to Associate Professor Walker’s clinic at the rheumatology clinic of the Flinders Medical Centre for management of her EGPA in 2011. Associate Professor Walker is a visiting rheumatologist to the Flinders Medical Centre. Following a review on 24 August 2011, Associate Professor Walker wrote:

    I have explained these results to Maria. She is aware that the advice from the unit and from myself is that she consider a steroid-sparing agent such as azathioprine. She is aware of side effects of prednisolone including long term osteopenia/osteoporosis with fracture, weight gain, hypertension, unmasking underlying diabetes, early cataract formation. Despite this she wishes to pursue steroid therapy as a sole therapy for treatment. Therefore I have recommended that she reduce her prednisolone to 10mg daily over a 4 – 6 week period.[37]

    [37] ST163 p 699

  20. Associate Professor Walker told the Tribunal that steroid sparing treatment was always her preferred option for Ms Tralongo. That is because it is the standard, recommended practice. She considered that it would have provided better outcomes for Ms Tralongo in the long term. Associate Professor Walker confirmed that she gave that advice to Ms Tralongo regularly from 2011 onwards. She understood that other specialists provided similar advice to Ms Tralongo.

  21. Dr Bradbeer continued to monitor Ms Tralongo’s asthma. By December 2011, the treatment with Symbicort was helping to keep the asthma under control. Dr Bradbeer expressed his continuing concern about her use of prednisolone, which at that time amounted to 23.5 mg daily and was making her diabetes more difficult to control, and she had also gained weight to the point of obesity. In his view, Ms Tralongo was: “making some bad decisions with regards to her ongoing health. Nevertheless, she has reasons for not wanting to be on a steroid sparing agent. (There are concerns about side effects. She does have a family history of cancer and is particularly worried about that).”[38] He confirmed his opinion that she should follow the rheumatology advice and use a steroid sparing agent.

    [38] ST165 pp 703-4

  22. In advice that was consistent with the recommendations from the specialists, Ms Tralongo’s general medical practitioner, Dr Hough, was also expressing concern about the side effects of prednisolone and the need to consider a steroid-sparing agent. For example, in 2012, Dr Hough recorded that he had a long discussion with Ms Tralongo about the side effects of prednisolone and disease. He noted her reluctance to consider methotrexate and that she felt she was able to reduce the dose of prednisolone herself. [39] Clearly, the doctor was sufficiently concerned to note his reservation that self-reduction of the dose, even down to 20 mg, would occur, and a re-referral to a specialist may be necessary.

    [39] ST306 p 1757

  23. By December 2012, Associate Professor Walker reported that Ms Tralongo was remaining reasonably stable. Her medications included prednisolone 21 mg daily. She noted[40] that Ms Tralongo: “has declined azathioprine and cyclophosphamide as steroid sparing agents despite recommendations to the contrary.” Associate Professor Walker reiterated that she discussed with Ms Tralongo “the strong benefits of using a steroid sparing agent.”

    [40] ST167 p 707

  24. In November 2015, Ms Tralongo confirmed with Dr Bradbeer that she had increased the prednisolone dose to 25 mg but was in the process of dropping it down to 10 mg. She had been struggling with asthma but was much better. Dr Bradbeer was confident that she had a flareup with seasonal exacerbation of asthma, rather than an aggravation of her Churg Strauss syndrome. Once more, he asked her to reduce the prednisolone dose towards a target of 5 mg daily.[41]

    [41] ST169 p 710

  25. Ms Tralongo’s obstructive sleep apnoea was confirmed in a study conducted by the Flinders Private hospital on 22 August 2018.[42] Her cardiologist, Dr Judd, confirmed in July 2019[43] that it was obvious Ms Tralongo’s use of prednisolone decreased her sugar control. More recently, she was consulting a respiratory and sleep physician, Dr Kruavit, who confirmed, in February 2020,[44] that she was using prednisolone 13 mg per day. In consultation with Associate Professor Walker, approval had been given to an application by Dr Kruavit for her to use Mepolizumab as an option, once again, to wean her off prednisolone. Dr Kruavit confirmed, however, that Ms Tralongo: “… is not very keen at all to proceed with Mepolizumab injections at this stage. This has actually been approved. She would prefer to stick to prednisolone but I think she would start to struggle with more side effects soon going forward.”[45] Dr Kruavit also recorded that that Ms Tralongo’s poorly controlled type II diabetes and obesity were a result of her dependence and use of prednisolone.[46] Associate Professor Walker stated in evidence that the recent approval for Mepolizumab was a positive sign and she had hoped that Ms Tralongo would take it up.

    [42] ST178 p 723

    [43] ST182 p 735

    [44] ST183 p 737

    [45] As above p 738

    [46] As above

  26. The concern about side effects of Ms Tralongo’s use of prednisolone is a continuing theme for at least eight years. In a report which she wrote on 16 December 2019 following an appointment with Ms Tralongo, who was then taking 8 mg prednisolone daily, Associate Professor Walker repeated the theme: [47]

    I have explained to Maria on multiple occasions that many of the symptoms she now experiences relate to steroid side effects rather than her Churg Strauss syndrome. Optimal control of her disease should include a DMARD[48] such as azathioprine or methotrexate.

    [47] ST54 p 267

    [48] DMARD – disease-modifying antirheumatic drugs

  27. In evidence, Associate Professor Walker confirmed that the major symptoms from the steroid side effects included exacerbation of diabetes, cataract formation, osteopenia and heightened risk to infections from any organism. By contrast, the control of the disease through a DMARD would, in Associate Professor Walker’s opinion, result in a longer period of remission that would not require therapy.

  28. Ms Tralongo expressed a fear of contracting liver cancer from use of the steroid sparing agents. Associate Professor Walker acknowledged that there are side effects from this medication. However, the risks are low and would be more likely, if they came at all, to be in the nature of damage, such as cirrhosis, and not liver cancer. Of course, Associate Professor Walker acknowledged her patient’s anxiety, and also acknowledged that it may have been difficult to wean Ms Tralongo permanently off prednisolone because of the length of time that she has been using it; however, the idea would be to keep the dose to minimal limits.

  29. Ms Tralongo told the Tribunal that there are times when she has increased her daily intake of prednisolone. Associate Professor Walker confirmed that some patients may self-direct increases in medication within prescribed parameters; for example, the patient was also suffering other health issues such as the flu. But it should definitely be in conjunction with advice from the respiratory physician and as part of active, ongoing medical review.

  30. By February 2021, Ms Tralongo’s history and condition were summarised by Associate Professor Walker in this way:

    She was diagnosed with vasculitis in 2008 when she presented with an eosinophilic pneumonia and foot drop as well as recurrent hearing loss. She has a persistent foot drop and hearing loss as a result of this condition. It is currently inactive under medical treatment.

    As a consequence of her vasculitis, she has received long-term steroids. These have exacerbated her type II diabetes mellitus and also weight gain and osteopaenia. She has had recurrent admissions with urinary sepsis and has chronic recurrent urinary tract infections. This problem is not related to her vasculitis but is exacerbated by the immune suppressive treatment that she receives.

    I anticipate that her foot drop makes it more difficult for her to mobilise. Her hearing loss may also impact on her day to day conversations.

    Her weight gain (exacerbated by steroids) has also reduced her mobility. Her recurrent infections mean that she is frequently unwell and requiring antibiotic therapy.

    Her asthma, which is separate but probably linked to her vasculitis, flares as steroids are withdrawn and she has frequent exacerbations. [49]

    [49] ST186 p 742

  31. In relation to cardiac involvement, Professor Gatenby wrote:

    …at the time of diagnosis there was clear evidence of cardiac involvement with ECG changes, echocardiographic abnormalities, elevated troponin and CK, and normal coronary arteries. Cardiac disease is common in EGPA and often overlooked. This is important when treatment is reviewed.[50]

    [50] Exhibit 6

  32. In October 2014, Ms Tralongo was referred to a professor of cardiovascular medicine, Dr Selva-Nayagam, who referred to her history of Churg Strauss syndrome, long-term use of prednisolone and “recently discovered mild to moderate LV systolic dysfunction.” He considered that the long-standing steroid use resulted in diabetes and cushingoid features. He listed comorbidities including hypertension, gastro-oesophageal reflux disease and asthma. He noted her breathlessness, obesity and nocturnal dyspnoea. As to the aetiology of the LV dysfunction, Dr Selva-Nayagam confirmed that it “is likely a non-ischaemic cardiomyopathy related to the Churg-Strauss vasculitis… It is probably secondary to small areas of necrosis in the myocardium as a result of the vasculitis. A second possibility is of myocardial ischaemia secondary to coronary artery disease. Clearly her diabetes and long-standing steroid use would be clear obvious risk factors and one cannot entirely discount this possibility.”[51]

    [51] ST252 p 1132

  33. Associate Professor Walker was able to retrieve some of her notes from this time and agreed that there was evidence of possible coronary artery involvement. Following the first consultation she had with Ms Tralongo in 2011, she arranged admission to the Repatriation Hospital, and the results of an echocardiogram were normal. More recently, Dr Judd has had charge of cardiac assessment, and Associate Professor Walker’s understanding is that there has been relatively mild cardiac involvement. She is unable to say whether that is the result of low-grade EGPA or, alternatively, diabetes and increase in body mass index.

  34. Professor Gatenby wrote:[52]

    … as a result of the fact that treatment of EGPA was based solely on prednisone, by itself suboptimal, Ms Tralongo has developed several complications that contribute to her current status. These include Obesity, Diabetes type 2, Obstructive Sleep Apnoea (OSA) and Osteoporosis. It is clear from the records provided to me that her Obesity and Diabetes are poorly controlled, particularly when her prednisone dose is increased and she is reported as being unable to tolerate the mask essential for control of OSA.

    [52] Exhibit 6

  35. Associate Professor Walker agreed that those complications of obesity, diabetes type 2, obstructive sleep apnoea and osteoporosis are aggravated by prednisolone. That is why she, and the other specialists, wanted to reduce the dose. She agreed also that the obstructive sleep apnoea is a continuing problem, and she has encouraged Ms Tralongo to continue to seek advice and input from her respiratory physician.

  1. Professor Gatenby considered that Ms Tralongo’s diabetes, obesity and obstructive sleep apnoea worsen her cardiac disease and lead to shortness of breath, reduced tolerance for exercise and swollen ankles. He considered that diabetes might contribute to the peripheral neuropathy, although the EGPA alone may have been sufficient. He considered that Ms Tralongo’s osteoporosis was treated and did not appear to contribute to any current impairment. He added that: “asthma is an intrinsic manifestation EGPA and often persists after all other manifestations appear to be well controlled. Many patients remain with a need for at least topical steroids and low dose prednisone. It is important to seek a more definitive immunosuppressive therapy…[53]

    [53] As above

  2. Professor Gatenby wrote:[54]

    I believe there is evidence in the clinical notes I have been provided with that two elements of her EGPA remain active and therefore potentially remediable with further therapy. These are Asthma and Rhinosinusitis. Furthermore, I think if her nasal airway can be improved allowing proper treatment of her OSA then her Cardiac condition may stabilise.

    [54] As above

  3. Associate Professor Walker agreed that therapy resulting in improvements in asthma and rhinosinusitis would improve her symptoms. She was not in a position to comment about the cardiac condition stabilising, as the last record she accessed indicated that the cardiac condition was stable. She reiterated her concern, however, that there were signs on examination in March 2022 that the EGPA was flaring again.[55]

    [55] Oral evidence

    NDIS RULES

  4. The NDIS Rules[56] address the question of when an impairment is permanent or likely to be permanent for the disability requirements. The applicable rules are r 5.4, r 5.5, r 5.6, and r 5.7, which provide that:

    5.4   An impairment is, or is likely to be, permanent (see paragraph 5.1(b)) only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment.

    5.5   An impairment may be permanent notwithstanding that the severity of its impact on the functional capacity of the person may fluctuate or there are prospects that the severity of the impact of the impairment on the person's functional capacity, including their psychosocial functioning, may improve.

    5.6   An impairment may require medical treatment and review before a determination can be made about whether the impairment is permanent or likely to be permanent. The impairment is, or is likely to be, permanent only if the impairment does not require further medical treatment or review in order for its permanency or likely permanency to be demonstrated (even though the impairment may continue to be treated and reviewed after this has been demonstrated).

    5.7   If an impairment is of a degenerative nature, the impairment is, or is likely to be, permanent if medical or other treatment would not, or would be unlikely to, improve the condition

    [56] NDIS (Becoming a Participant) Rules 2016

  5. In Davis, the Federal Court discussed the interrelationship between the NDIS Act and the NDIS Rules:

    … r 5.4 and r 5.6 prescribe circumstances where, if the repository of the power is satisfied on the evidence of the applicability of either of those rules, a person’s impairment will be excluded from meeting s 24(1)(b). Relevantly, r 5.4 directs attention to a negative state of fact. [57]

    [57] As above (n 27) at [131]

  6. Further, and on the assumption that NDIS Rule 5.4 is valid, the Federal Court stated:

    … some meaning and operation must be given to it as an exclusionary circumstance, in terms of when an impairment will not be a “permanent impairment.[58]

    [58] As above at [134]

  7. Assuming the validity of NDIS Rule 5.6, the Federal Court proceeded on the basis that the Rule:

    … prescribes circumstances where, if the repository of the power is satisfied on the evidence of the applicability of that rule, a person’s impairment will be excluded from meeting s 24(1)(b). Like r 5.4, r 5.6 directs attention to a negative state of fact – whether an impairment does not require further medical treatment or review in order for its permanency or likely permanency to be demonstrated. To be clear, although these rules are expressed in objective terms, their purpose is to guide the repository’s formation of a state of satisfaction for the purposes of s 21(1)(c) of the NDIS Act; namely that the repository (here the Tribunal):

    is satisfied that, at the time of considering the request:

    (i) the person meets the disability requirements (see section 24) …[59]

    [59] As above at [158]

  8. The Tribunal has considered the question of permanency in a number of cases. In Timofticiuc and National Disability Insurance Agency,[60] the Tribunal (Member Buxton) noted that the applicant in that matter had engaged in evidence-based clinical, medical or other treatments for an adjustment disorder, including taking recommended medications, participating in regular consultations with his treating psychiatrist and engaging in therapy. Accordingly, there was no further treatment available that would be likely to remedy the applicant’s impairment.[61]

    [60] [2021] AATA 3015

    [61] As above at [70]

  9. In Jourifan and National Disability Insurance Agency,[62] the evidence was inconsistent about the likelihood of surgery reducing the applicant’s back pain and assisting his functionality. In the absence of consistent medical evidence or recent specialist review, the Tribunal (Senior Member Bygrave) was not satisfied that surgery was not a treatment to remedy the applicant’s back injury. Accordingly, the Tribunal was not satisfied that his back injury was permanent within the meaning of s 24(1)(b) of the NDIS Act.

    [62] [2020] AATA 1883 at [41-43]

  10. Similarly, in FBJV & National Disability Insurance Agency,[63] the Tribunal (Member Frost) applied the reasoning in Jourifan that:

    … where a recommended treatment was not being undertaken by a prospective participant in the NDIS, it could not be concluded that they were accessing all “known, available and appropriate evidence-based… treatments that would be likely to remedy” the impairment and therefore the permanency criterion in subsection 24(1)(b) of the NDIS Act could not be met. Here, the Tribunal is not satisfied that FBJV has undertaken all recommended treatments that would be likely to remedy her impairment… The Tribunal does acknowledge that FBJV has undertaken a range of treatments for her endometriosis with limited success. This has included surgery, which is not recommended again, and various medications, including for pain relief. However, based on the evidence before the Tribunal… it is not satisfied that FBJV is accessing all “known, available and appropriate evidence-based treatments that would be likely to remedy”, here being substantially relieve, her impairment.

    [63] [2021] AATA 913 at [121–22]

  11. Professor Gatenby wrote:[64]

    … on multiple occasions over subsequent years at visits to Flinders Medical Centre it is recorded that steroid sparing agents were discussed with Ms Tralongo. She repeatedly declined what would be regarded as best practice therapy.

    (Emphasis added)

    [64] Exhibit 6

  12. Associate Professor Walker agreed, in her evidence, with Professor Gatenby’s opinion. She confirmed that she had repeatedly given that advice to Ms Tralongo and it had been repeatedly declined.

  13. Professor Gatenby wrote:[65]

    … a disease like EGPA is measured in research studies and sometimes in clinical practice by a “damage index”. Such an index incorporates the direct damage of the condition and damage attributable to the treatment. In Mrs Tralongo’s case the treatment is a very significant contribution to the observed damage.

    [65] As above

  14. Associate Professor Walker agreed that the treatment has been a significant contribution to the damage and that it would have been better for Ms Tralongo to pursue other treatments. The treatment which Ms Tralongo pursued persistently did not conform with Associate Professor Walker’s recommendations, which are documented in letters, reports and notes. Ultimately, she considers that Ms Tralongo’s choice of medication has contributed to the damage which she has from EGPA, and she would have done better with the alternative recommended best practice treatments. She gave that advice to Ms Tralongo consistently from 2011 onwards. She understood that her advice was consistent with the approach of other specialists who were concerned about the largely self-directed course of treatment which Ms Tralongo preferred.

  15. Associate Professor Walker stated that it is every person’s right to decide which treatment they use, and if the doctor provides appropriate information which is understood by the patient, it is the patient’s personal choice to pursue a particular line of treatment. Associate Professor Walker confirmed in her oral evidence to the Tribunal that steroid sparing treatment was always her preferred option for Ms Tralongo. That is because it is the standard, recommended practice. She considered that it would have provided better outcomes for Ms Tralongo in the long term. Clearly, Associate Professor Walker contended with a difficult dilemma in doctor-patient relationship, dealing with a serious disease with possible, serious health outcomes, in addition to the concerns which her patient has about theoretical side effects of cancer. As Professor Gatenby put it in evidence, “people are terrified of cancer”. Nonetheless, the overwhelming implication of Associate Professor Walker’s evidence, and the letters and notes of other treating specialists, is that there was continuing, long-term concern that some of the prednisolone dosing was determined by the patient rather than by advice from the general medical practitioner or the specialist.

  16. The Tribunal accepts Professor Gatenby’s evidence about the efficacy of available, best-practice medical treatments for Ms Tralongo. The Tribunal is satisfied that there are known and appropriate evidence-based medical treatments available to Ms Tralongo and that those treatments were available to her from the outset. In his evidence, Professor Gatenby confirmed that best practice medical treatments were available to Ms Tralongo from 2008, and, with the exception of cyclophosphamide, which was not recommended during the first admission, all of the recommendations which were provided to her for medication and treatment were in accordance with best practice and were available from the outset.

  17. NDIS Rule 5.4 requires consideration of whether there are available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment. An understanding of the meaning of “remedy” in NDIS Rule 5.4 is essential to the issue before the Tribunal. In Davis, the Federal Court discussed “remedy” and explained it as follows:[66]

    In this context, “remedy” should be understood to mean more than just relieve or improve. That is because r 5.5 recognises that an impairment may be permanent notwithstanding the severity of its impact on a person may fluctuate, or there are prospects for improvement. These changes in the impacts of an impairment may occur because of, amongst other matters, treatment. Therefore, in r 5.4 the word “remedy” should be understood to mean something approaching a removal or cure of the impairment. That is consistent with the meaning I consider should be given to the statutory phrase “permanent impairment”, as an impairment which is enduring and, while its impacts on a person from time to time might fluctuate, is not an impairment which is likely to be removed or cured.

    [66] [2022] FCA 1002 at [136]

  18. The Operational Guideline provides guidance for assessing permanency:[67]

    [67] T18 at [105]

    8.2 When is an impairment permanent or likely to be permanent?

    The NDIA must be satisfied that a prospective participant's impairment/s are, or are likely to be, permanent (i.e. likely to be lifelong) (section 24(1)(b)).

    The following principles provide guidance:

    • an impairment is, or is likely to be, permanent only if there are no known, available and appropriate evidence based treatments that would be likely to remedy (i.e. cure or substantially relieve) the impairment (rule 5.4 of the Becoming a Participant Rules);

    • an impairment that varies in intensity (for example, because the impairment is of a chronic episodic nature) may be permanent despite the variation (section 24(2));

    • an impairment may be permanent notwithstanding that the severity of its impact on the functional impact of the person may fluctuate or potentially improve (rule 5.5 of the Becoming a Participant Rules);

    • an impairment is, or is likely to be, permanent only if the impairment does not require further medical treatment or review in order for its likely permanency to be demonstrated (rule 5.6 of the Becoming a Participant Rules).

    • In this context, an impairment may be permanent notwithstanding that it may continue to be treated and reviewed after its permanency, or likely permanency, has been medically demonstrated; and

    • if an impairment is of a degenerative nature, the impairment is, or is likely to be permanent if medical or other treatment would not, or would be unlikely to improve the condition (rule 5.7 of the Becoming a Participant Rules).

    If a prospective participant has multiple impairments, the NDIA will consider each impairment separately and determine whether each impairment is, or is likely to be permanent. However, the NDIA only needs to be satisfied that at least one of a prospective participant's impairments are, or are likely to be, permanent.

    Where there is a possibility of medical treatment (such as surgery) to treat the prospective participant's condition, and the treatment has some prospect of success, the NDIA should not conclude that the impairment is permanent but should wait until the outcome of the treatment is known (Mulligan and NDIA [2015] AATA 974 at [71]).

    (Emphasis in original)

  19. The word “remedy” is not defined in the NDIS Act or in the NDIS Rules. The first principle in the Operational Guideline refers to a remedy in the nature of providing a cure or substantially relieving the impairment. In FBJV and NDIA the Tribunal (Member Frost) considered a contention by the applicant in that case that the Operational Guidelines should not be applied because the use of the term “substantially relieve” is contrary to the statutory criteria and the word “remedy” must be construed as a reference to curing, not relieving, the condition. In rejecting that argument, the Tribunal observed that:

    Under the Rules, an impairment is permanent ‘only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment’... While the word ‘remedy’ can include ‘cure’, the Rules do not require that the treatments would be likely to ‘cure’ the impairment. In this regard, the word ‘remedy’ should be given its ordinary everyday meaning. The Macquarie Dictionary relevantly defines ‘remedy’ to mean ‘something that cures or relieves a disease or bodily disorder; a healing medicine, application, or treatment’… For completeness, the Tribunal notes that ‘relieve’ is defined to mean ‘to ease or alleviate (pain, distress, anxiety, need, etc.)… Accordingly, an impairment is ‘permanent’, or likely to be permanent, for the purpose of determining access to the NDIS, when there is no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to cure or relieve the impairment. This necessarily includes easing the impact or effects of the impairment. As a result, the Tribunal finds that the use of the term ‘substantially relieve’ in the Operational Guideline is not inconsistent with the term ‘remedy’ used in the Rules in relation to establishing the permanence of an impairment and should therefore be applied.[68]

    [68] [2021] AATA 913 at [117]

  20. In XMFS and National Disability Insurance Agency[69] the Tribunal (Senior Member Bygrave) referred to and adopted this approach and analysis of “remedy”. It was reiterated by the Tribunal (Member Frost) in MRLK & NDIA[70]

    [69] [2022 AATA] 568 at [115]

    [70] [2021] AATA 913 at [117]

  21. In evidence,[71] Professor Gatenby explained that steroid sparing agents are medications which are used widely in the treatment of inflammatory auto immune diseases. Most of them were developed for the treatment of other diseases, while some were developed as anti-cancer agents and included within them were medicines which the treating doctors had offered to Ms Tralongo. Professor Gatenby explained in his evidence that a dose of 5 mg of prednisolone may be required for some EGPA patients because it assists to control their asthma. He noted also the availability of the monoclonal antibody, Mepolizumab, which could be used successfully in a significant number of patients and its use could result in prednisolone being ceased completely.[72]

    [71] Transcript of evidence p 9

    [72] As above p 11

  22. Professor Gatenby considered[73] that two elements of the EGPA remained active, namely asthma and rhinosinusitis. He considered that they were both capable of remedy with further therapy. He also considered that a treatment regime aimed at improving her nasal airway would allow appropriate treatment of the sleep apnoea, which should lead to stabilising the cardiac condition.[74] In turn, that should lead to permanent reduction in the dose of prednisolone, which would also assist the management of Ms Tralongo’s diabetes and obesity.[75]

    [73] As above p 18; Exhibit 6

    [74] Exhibit 6

    [75] As above pp 18-19

  23. Professor Gatenby discounted the risk of liver cancer from the medication consistently recommended for Ms Tralongo. To the contrary, he explained in evidence that the risk factors for liver cancer in Ms Tralongo are her fatty liver disease secondary to her obesity and diabetes “caused in turn by her prednisolone in her case”.[76] He explained further that her obesity and diabetes will improve from reduced doses of prednisolone which, in turn, reduces the risk of liver cancer.

    [76] As above p 12

  24. Ms Tralongo has cardiac disease. Professor Gatenby considered that the aetiology is complex and includes EGPA, sleep apnoea, diabetes and possible prednisolone toxicity. The contribution of EGPA to her cardiomyopathy can be countered, in his opinion, by appropriate treatment, which would include Mepolizumab and minimal prednisolone.[77]

    [77] Exhibit 7

  25. Ms Tralongo has peripheral neuropathy. Professor Gatenby considered this is consistent with damage both by EGPA and poorly controlled diabetes.[78] With appropriate treatment, Professor Gatenby considered that there could be prevention of further damage to Ms Tralongo in her diabetic peripheral neuropathy. He explained in evidence that permanent reduction in the dose of prednisolone should also reduce her difficulties in walking, because the clinical evidence of her steroid myopathy and its effect on proximal muscles would probably contribute to difficulties that she has in walking. He considered that problems which Ms Tralongo may have with fatigue – for example, from walking for more than 50 metres – are less likely to be caused by peripheral neuropathy and more likely to be due to cardiovascular respiratory conditions and general deconditioning.

    [78] As above

  26. Further, Professor Gatenby considered that appropriate treatment should lead to better management of Ms Tralongo’s obstructive sleep apnoea and diabetes.

  27. Professor Gatenby acknowledged in his evidence that EGPA is a difficult disease to treat because of its persistence. He referred in evidence to various studies about a cure for EGPA. In one of the studies, in France, 54 per cent of patients recorded a 10-year disease-free survival, without symptoms, following appropriate treatment, which he described as an “impressive remission”.[79] He added his view that it is “absolutely untrue and gives people the wrong idea” to assert that there is no cure. Professor Gatenby considered that, on the medical reports that he had read, a remission had never been truly achieved, as only intermittent control has been achieved through increased doses of prednisone.[80] In her oral evidence, Associate Professor Walker expressed a similar view. She noted there were times when Ms Tralongo’s EGPA was inactive, albeit with the possibility of small, intermittent flareups. In a telephone consultation on 25 January 2021, Associate Professor Walker formed the impression that the EGPA was inactive at that time.[81] She explained in her evidence that, because Ms Tralongo has always taken steroids and, although there are times when her EGPA has been inactive, she has never had a treatment-free, or extended, period of remission.

    [79] Transcript of evidence p 10

    [80] Exhibit 6

    [81] ST 189 p 782

  1. Associate Professor Walker made important points about prolonged remission. This is a disease which will not go away completely, and, in that sense, there is no cure. Signs of prolonged remission can be confirmed from biochemical markers, clinical examination and imaging tests when appropriate. If Ms Tralongo went into prolonged remission, there is still a risk of a flareup or relapse. However, the best practice treatments have the optimal chance of leading to prolonged remission, which would mean that there is no active disease affecting the patient, the use of medication could be reduced or even ceased altogether. In order to remedy the impairments, the approach which Professor Gatenby outlined (with which Associate Professor Walker agrees[82]), namely, a course of Mepolizumab:[83]

    If benefit was achieved then she should receive a maintenance agent, Azathioprine, Methotrexate or Mycophenolate.  Mepolizumab would potentially improve control of both Asthma and Rhinosinusitis.

    [82] Transcript of evidence p 13; Exhibit 11

    [83] Exhibit 6

  2. The Tribunal is satisfied by the evidence of Professor Gatenby, that the best practice medical treatment which he described would be likely to provide a remedy for Ms Tralongo. That remedy would be in the nature of, and in the words of the Federal Court in Davis: “something approaching a removal or cure of the impairment”. The remedy would be a remission which substantially relieves the effects of the impairment.

  3. The Tribunal accepts the evidence of Professor Gatenby, that there are known, available and appropriate, evidence-based clinical, medical treatments available to Ms Tralongo. The Tribunal accepts that those treatments for EGPA are available now, and mostly available to her since first admission in 2008. On the question of the availability of evidence-based medical treatments, there is a commonality in the opinion and evidence of Professor Gatenby and Associate Professor Walker. Equally, those opinions and recommendations have been in accord with the views of other specialists in complementary areas, including respiratory and cardiac treatment. The various medical conditions from which Ms Tralongo suffers have been discussed extensively in these reasons. Going back to 2011, Associate Professor Walker wrote that Ms Tralongo: “… is aware that the advice from the unit and from myself is that she consider a steroid-sparing agent such as azathioprine. She is aware of side effects of prednisolone including long term osteopenia/osteoporosis with fracture, weight gain, hypertension, unmasking underlying diabetes, early cataract formation. Despite this she wishes to pursue steroid therapy as a sole therapy for treatment.”[84]

    [84] ST163 p 699

  4. The Tribunal accepts the evidence of Professor Gatenby and Associate Professor Walker about the choices which Ms Tralongo has made about the reliance on prednisolone and its negative effects. The Tribunal accepts the evidence that those effects should be addressed by appropriate best practice treatments which are available. The treatment which has been recommended to Ms Tralongo to treat her impairment has been declined. She has declined continuously to implement recommended treatment. It is clear that treatment is available which would be likely to provide a remedy for the impairment.

  5. Accordingly, the Tribunal is not satisfied that Ms Tralongo has accessed all “known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment”, within the meaning of NDIS Rule 5.4.

  6. The Tribunal finds that Ms Tralongo does not have an impairment or impairments that are or are likely to be permanent within the meaning of s 24(1)(b) of the NDIS Act and the NDIS Rules. Those impairments include impairments from EGPA, diabetes myelitis, asthma, cardiac arrhythmia and dilated cardiomyopathy, in addition to sleep apnoea and obesity. Accordingly, Ms Tralongo’s application for access to the NDIS cannot succeed as this criterion is not met.

    DISABILITY REQUIREMNTS – SUMMARY

  7. Ms Tralongo meets the age requirements under s 22 and the residence requirements under s 23 of the NDIS Act. She meets the disability requirements under s24(1)(a) of the NDIS Act.

  8. Ms Tralongo does not satisfy the requirements under s 24(1)(b) of the NDIS Act as her physical impairments are not permanent or likely to be permanent within the meaning of that subsection.

  9. Ms Tralongo must satisfy all of the requirements in s 24(1) in order to meet the disability requirements to become a participant in the NDIS. In view of the Tribunal’s finding that she does not satisfy paragraph (b) of the subsection, it is not necessary to determine if she satisfies the remaining subparagraphs.

    EARLY INTERVENTION REQUIREMENTS

  10. Section 25 of the NDIS Act sets out the requirements for access to the NDIS under the early intervention criteria.

  11. Section 2.5(b) of the NDIS Rules includes the following passage about the rationale for the early intervention requirements as an alternative to accessing the scheme through the disability requirements:

    A person can access the NDIS through the early intervention requirements without having substantially reduced functional capacity. Instead, the early intervention requirements consider the likely trajectory and impact of a person’s impairment over time and the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity…

  12. Section 9 of the Operational Guideline provides guidance about the purpose and potential benefits of early intervention. It states:

    Early intervention support is available to both children and adults who meet the early intervention requirements. The intention of early intervention is to alleviate the impact of a person’s impairment upon their functional capacity by providing support at the earliest possible stage. Early intervention support is also intended to benefit a person by reducing their future needs for supports.[85]

    [85] Exhibit B, T18, Operational Guidelines – Access, pp 105-106

  13. As already discussed and determined, Ms Tralongo’s impairment is not permanent or likely to be permanent, and therefore s 25(1)(a) of the NDIS Act is not satisfied. Accordingly, Ms Tralongo cannot fulfill the requirements for early intervention to enable her to become a participant in the NDIS.

    CONCLUSION

  14. The effect of the Tribunal’s decision is that Ms Tralongo does not meet the criteria for requiring support under the NDIS for her lifetime. She is now 67 years old and is not eligible to reapply to participate in the scheme. Her general medical practitioner, Dr Rampatige, wrote to the Tribunal on 4 April 2022,[86] and in that correspondence she noted that Ms Tralongo might need assistance with cleaning, falls prevention and daily activities. Dr Rampatige referred to several discussions which she has had with Ms Tralongo about accessing aged care funding. She commented that Ms Tralongo has declined to pursue that potential source of assistance.

    [86] Exhibit 10

    DECISION

  15. The reviewable decision is affirmed.

    I certify that the preceding 111 (one hundred and eleven) paragraphs are a true copy of the reasons for the decision herein of Member Thompson.

    .......[Sgnd]............................

    Associate

Date of Decision: 21 March 2023
Date of Hearing: 27 April, 28 April, 26 June 2022
Counsel for the Applicant: Self-represented
Solicitor for the Respondent: Ms Reedy
Mills Oakley Lawyers

Counsel for the Respondent:

Mr Schatz
Murray Chambers


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