Charters and National Disability Insurance Agency

Charters and National Disability Insurance Agency [2021] AATA 4762 (21 December 2021)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2019/6715
Re:Meghan Charters
APPLICANT

AndNational Disability Insurance Agency
RESPONDENT

DECISION
Tribunal:Mrs J C Kelly, Senior Member
Senior Member M Griffin QC
Date:21 December 2021
Place:Sydney

The reviewable decision made on 30 September 2019, which affirmed the decision made on 4 February 2019 to refuse the Applicant’s access request, is affirmed.
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......................................[sgd].................................
Mrs J C Kelly, Senior Member
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME - access to the scheme – disability requirements not met – whether applicant meets early intervention requirements – where applicant has permanent impairments under s 25(1) – Ehlers-Danlos Syndrome – Narcolepsy – whether provision of early intervention supports is likely to reduce the applicant’s future needs for supports in relation to disability – decision affirmed
LEGISLATION
Administrative Appeals Tribunal Act 1975 (Cth) ss 25, 43
National Disability Insurance Act 2013 (Cth) ss 20, 21, 24, 25, 33, 99, 100, 103
CASES
Frugtniet v Australian Securities and Investments Commission (2019) 266 CLR 250
Grant v Repatriation Commission (1999) 57 ALD 1
McLaughlin v National Disability Insurance Agency [2021] AATA 496
Shi v Migration Agents Registration Authority (2008) 235 CLR 286
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SECONDARY MATERIALS
Access to the NDIS Operational Guideline
National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth)
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
REASONS FOR DECISION
Mrs J C Kelly, Senior Member
Senior Member M Griffin QC
21 December 2021
Introduction

The Applicant, Ms Charters, seeks access to the National Disability Insurance Scheme (the NDIS).
She is 29 years old. The Applicant’s Statement of Facts, Issues and Contentions (SoFIC) listed the following “current” diagnoses:
(a)Ehlers-Danlos Syndrome (EDS);
(b)Narcolepsy;
(c)Chronic Pain Syndrome/Fibromyalgia;
(d)Postural Orthostatic Tachycardia Syndrome (POTS)/Orthostatic Intolerance;
(e)Cervical Spondylosis; and
(f)Scoliosis.
The SoFIC also stated that the Applicant has also been diagnosed with anxiety and depression for which she takes Lexapro daily.
The Applicant lodged her access request form with the Respondent on 9 January 2019. Her request was refused on 4 February 2019. That decision was affirmed on 30 September 2019 on internal review. The 30 September 2019 decision is the reviewable decision in the Tribunal.
The issues
The Applicant concedes that she does not meet the disability requirements for entry into the NDIS pursuant to subsection 24(1) of the National Disability Insurance Act 2013 (Cth) (the Act). She claims that she meets the criteria for early intervention in section 25 of the Act, which is set out below. The Respondent conceded that the Applicant satisfies subsections 25(1)(a) and (c) of the Act.
The questions to be decided are therefore whether the Applicant satisfies the criteria in subsection 25(1)(b) and, if so, whether subsection 25(3) applies.
It is necessary to determine whether the Applicant’s condition Cervical Spondylosis (CS) can be considered when deciding whether the Applicant satisfies the early intervention criteria. The date of onset was September 2019[1], around the time the reviewable decision was made and after the application for access had been lodged and the primary decision made. The Respondent contended that this condition cannot be considered. The Applicant’s legal representative conceded during the hearing that there was no evidence that there is a connection between EDS and CS but during submissions a possible connection was referred to.
[1] Report of Dr Jonny Wong, 28 January 2020, Tender Bundle, A7.
Section 25 of the Act
It is useful to set out section 25 of the Act in full. The provisions in dispute are highlighted. The section provides:
(1) A person meets the early intervention requirements if:
(a) the person:
(i) has one or more identified intellectual, cognitive, neurological, sensory or physical impairments that are, or are likely to be, permanent; or
(ii) has one or more identified impairments that are attributable to a psychiatric condition and are, or are likely to be, permanent; or
(ii) is a child who has developmental delay; and
(b) the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by reducing the person’s future needs for supports in relation to disability; and
(c) the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by:
(i) mitigating or alleviating the impact of the person’s impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self care or self management; or
(ii) preventing the deterioration of such functional capacity; or
(iii) improving such functional capacity; or
(iv) strengthening the sustainability of informal supports available to the person, including through building the capacity of the person’s carer.
Note: In certain circumstances, a person with a degenerative condition could meet the early intervention requirements and therefore become a participant.
(2) The CEO is taken to be satisfied as mentioned in paragraphs (1)(b) and (c) if one or more of the person’s impairments are prescribed by the National Disability Insurance Scheme rules for the purposes of this subsection.
(3) Despite subsections (1) and (2), the person does not meet the early intervention requirements if the CEO is satisfied that early intervention support for the person is not most appropriately funded or provided through the National Disability Insurance Scheme, and is more appropriately funded or provided through other general systems of service delivery or support services offered:
(a) as part of a universal service obligation; or
(b) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
The National Disability Insurance Scheme (Becoming a Participant) Rules 2016
The National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth) (the Rules) apply. Part 6 of the Rules sets out criteria for determining when a person meets the early intervention requirements.
Rule 6.2(b) restates subsection 25(1)(b) of the Act. Relevantly, rule 6.8 says that the main way the CEO can determine whether the provision of early intervention supports is likely to benefit the person as set out in rule 6.2(b) is to consider evidence as indicated in rule 6.9. Rule 6.9 states:
In deciding whether provision of early intervention supports is likely to benefit the person in the way mentioned in paragraph 6.2(b), the CEO is expected to consider:
(a) the likely trajectory and impact of the person’s impairment over time; and
(b) the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity and in reducing their future needs for supports; and
(c) evidence from a range of sources, such as information provided by the person with disability or their family members of carers. The CEO may also in some cases seek expert opinion.
Part 8 of the Rules includes definitions:
Service systems means general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(a) as part of a universal service obligation; or
(b) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
Access to the NDIS Operational Guideline
The Access to the NDIS Operational Guideline (the Guideline) includes provisions relating to the early intervention requirements at section 9. The second line of the first paragraph states:
The intention of early intervention is to alleviate the impact of a person’s impairment upon their functional capacity by providing support at the earlier possible stage. [Emphasis added.]
Section 9.4 of the Guideline requires regard being given to the considerations outlined in Schedule 1 of the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (Supports Rules) when deciding whether the early intervention support is most appropriately funded or provided through the NDIS.
Historical Medical Evidence
The Applicant provided a number of historical medical reports. The earliest related to a consultation on 30 September 2009 with Dr Louise Tofts, Rehabilitation Fellow, at the Rehabilitation Department of The Children’s Hospital at Westmead. Dr Tofts reported:
Meghan is significant symptomatic (sic) from her joint hypermobility syndrome, will need to maintain her exercise levels, work towards keeping a good posture and be conscious of treating symptoms as they arise to maintain a reasonable and tolerable pain level. We find that people with very flexible joints get more problems with pain as they become unfit and deconditioned and the more care and attention that is paid to keeping the body health (sic) pays off in improved endurance and reduced pain symptoms.
In a partially obscured report dated in October 2010, Dr David Barnes confirmed the Applicant’s diagnosis of narcolepsy and that he was applying to the Health Department for Dexamphetamine therapy. He thought she would do well.
In a report dated 21 October 2010, Dr Roberto Russo, consultant rheumatologist, referred to the confirmed narcolepsy diagnosis and “probable secondary fibromyalgia” for which he was reluctant to introduce any pharmacological treatment until her narcolepsy had been managed. He was concerned about her mood and felt that she would benefit from seeing a psychologist, and if needed, a psychiatrist and said that it may be an opportunity to commence cognitive behavioural therapy to assist her management of the fibromyalgia.
Dr Stephen Reddel, consultant neurologist, signed a report typed on 18 May 2011. It was addressed to Professor Sean Riminton at the Immunology Department of Concord Hospital. Dr Reddel referred to Dr Barnes’s diagnosis of narcolepsy and commented that he did not get any history of real cataplexy. He noted the Applicant’s clinical ligamentous laxity, previously diagnosed mitral valve prolapse, and that she has “something of an immunological problem”. After referring to two substances related to a known gene for EDS, Dr Reddel said that he wished to do a “high read cytogenetics but I will find out the most up to date test”.
Professor David Sillence, clinical geneticist, signed a report dated 14 November 2011, having reviewed the Applicant at the Outpatient Adult Connective Tissue Dysplasia Service. He related her “constellation of symptoms”, POTS, narcolepsy, respiratory symptoms, and immune dysfunction, to her Joint Hypermobility Syndrome.
Dr J M Spies from the Department of Neurology, Institute of Clinical Neurosciences, Royal Prince Alfred Hospital and University of Sydney, wrote a report dated 27 November 2012 about the Applicant’s orthostatic intolerance. Dr Spies wrote that test findings were consistent with orthostatic intolerance but the findings on tilt study did not meet the criteria for POTS. In the doctor’s opinion, there was a spectrum, and the treatment was the same. Dr Spies recommended that the Applicant “commence a targeted program to build up resistance in the lower limb anti-gravity muscles so calf presses leg presses and hip flexion against resistance is a bare minimum”.
Associate Professor Riminton wrote a report dated 9 April 2015. He listed the Applicant’s “problems”:
1. Complex partial antibody deficiency syndrome on subcutaneous immunoglobulin replacement therapy.
2. Connective tissue disease with hypermobility and mitral valve prolapse.
3. Orthostatic hypotension.
4. Narcolepsy.
5. Chronic pain.
6. Adjustment disorder/situational depression.
Dr Riminton commented that the Applicant was doing well with subcutaneous immunoglobulin replacement, but her general heath remained impaired by “multiple coexistent medical problems”. He reported active acne, narcolepsy, pain, memory difficulties and depression and that the Applicant was under review with a psychiatrist.
Evidence addressing the present application
In the Access Request Form dated 9 January 2019, the Applicant stated that:
·her carer was her mother, Rebecca Charters (Ms Charters);
·her primary disability (“This is the disability that has the most impact on your daily life”) was EDS;
·her other disabilities were:
i.narcolepsy; and
ii.specific immune antibody deficiency.
A Physiotherapy Assessment dated 23 November 2018 was prepared by David Zhang “in regards to applying for NDIS funding for physiotherapy”. The Applicant first attended the clinic on 4 September 2018 “with acute neck, right scapulothoracic and lower back pain after moving apartments and changing to a new bed”. Her past medical history included EDS. She presented with mild thoraco-lumbar scoliosis to the right with ribs more prominent than the left side. She had attended 11 times for ongoing physiotherapy treatment “with symptoms associated with pain, decreased muscular endurance and perceived instability around the shoulders”. That equated to approximately one physiotherapy session a week inclusive of soft tissue release, dry needling, joint mobilisations, mobilisations with movement and exercise prescription for long-term management, and injury reduction.
Mr Zhang reported that the Applicant’s current exercise regime consisted of strengthening and aerobic exercises. She was participating in Pilates once a week and had been prescribed TheraBand strengthening exercises for the shoulders. She had started to experience hip discomfort when jogging on the treadmill and had regressed to using the Ro machine (low resistance) and swimming as an alternative. She reported being able to perform all swimming strokes besides butterfly due to shoulder instability. They had spoken about specific part practice drills with flippers, kickboard, and pool buoy to train this functionally, as well as shoulder strengthening exercises at the gym.
Mr Zang reported a history of shoulder instability, with right shoulder subluxation in 2006 and left shoulder dislocation in 2007 (requiring an ambulance to be called). There had been no episodes since. She had reported that her right knee dislocated nine times between the ages of 11 and 17. Mr Zang observed that by introducing this strengthening exercise regime, the Applicant had started to regain confidence in land-based aerobic and functional activity.
The Applicant had reported to Mr Zhang that she had required physiotherapy for multiple years with intermittent injuries at practices in the following locations:
·Five Dock (Pre 2013);
·Double Bay - Musculoskeletal specialist (2013-2014) once a week to once a fortnight, with dry needling on the off weeks;
·Five Dock (2015-2018);
·Chiropractor in Belrose (2017) who the Applicant reported seeing once a fortnight;
·Dynamic Physio & Chiro CBD (2018).
At the time of this report, the Applicant was working full-time as an IT specialist doing office-based work. She reported getting up from her desk one or two times an hour to perform stretches and exercises. She was a casual photography assistant on the weekends as needed. She held a camera that was over 5 kg including the body and lens. She typically worked from 8 am to 8 pm from setup to pack up. She took a foam roller for self-myofascial release/symptomatic relief and had rest breaks every 30 minutes.
Mr Zhang reported that the Applicant’s main areas of complaint had been around the hips, knees, upper and lower back, shoulders, and neck with associated tension headaches. He set out details regarding each area.
The Applicant and Mr Zhang had worked together to set goals to maintain an active daily routine and exercise program, as follows:
·To continue with Pilates class and swimming l x per week, along with 2-3 gym sessions inclusive of strengthening and aerobic exercise for the next 3 months with appropriate exercise progressions and increasing load.
·To decrease body weight by 3kgs in the next 6 weeks through appropriate aerobic exercise and improving her diet
o Currently at 7lkgs. Reports gaining 13kgs in the past few years through decreased capacity to exercise, which has increased load on her weight bearing joints.
·To be able to swim in the butterfly stroke confidently and pain free in 3 months through her strengthening program and appropriate progressions
·To be able to perform all physical tasks in a social environment with her friends through improving global strengthening, increasing confidence and being more aware of her limitations through education.
Mr Zhang reported that pain was the Applicant’s main impairment at that time, with recurrent visits to physiotherapy for symptomatic relief. He considered that to be most likely due to poor muscular endurance, her presentation of EDS and the mild thoracolumbar scoliosis to the right. She also presented with weakness isolated to areas around the shoulder leading to decreased ability and increased risk of injury. The pain she experienced in the neck and upper and lower back was also consistent with her mild thoracolumbar scoliosis. She had reported that her rheumatologist recommended Pilates for strengthening which she had been inconsistently participating in due to the costs of classes.
The Applicant felt that she would benefit from physiotherapy. Mr Zhang noted “a few key points” that she mentioned:
·Having a professional to monitor stability/strength of joints.
·Getting assistance with injury prevention/reduction.
·Improving her confidence and body awareness through being educated.
·Receiving symptomatic relief within in the clinic to prevent setbacks and keep her on track.
·Exercise based intervention via an independently tailored strengthening and conditioning program with appropriate progressions.
·She has really seen the benefits of Pilates but has been limited due to her ability to pay for classes on a weekly basis. She would be really interested in participating in clinical Pilates at our clinic.
Mr Zhang believed that the Applicant required weekly ongoing physiotherapy treatment for the next three months and then fortnightly visits for the following three months, a total of 18 physiotherapy appointments over the next six months consisting of soft tissue release therapy, joint mobilisations, dry needling, exercise-based intervention and clinical Pilates for symptomatic relief, long-term management and injury reduction.
Mr Zhang noted the Applicant’s presentation with global joint hypermobility which makes her more prone to subluxations or dislocations, and her reports of joint pain which were consistent with the pathophysiology of EDS, along with the possibility for earlier onset of osteoarthritis. Mr Zhang went on to observe that although this was something which cannot change, keeping her on track with an exercise program and progressing to land-based, high impact weight-bearing exercise to increase bone density and decrease the risk of osteoporosis, would be highly beneficial to her quality of life.
Application for internal review of decision refusing access
Attached to the application for internal review of the decision refusing access made on 4 February 2019 were a statement by Ms Charters and a physiotherapy assessment by Mr Zhang dated 17 April 2019.
Mr Zhang reported that the Applicant had seen Mr Zhang 38 times when he wrote his 17 April 2019 report. The report was in almost identical terms to the 18 September 2019 report. The most relevant difference for present purposes was his recommendations for two physiotherapy sessions a week for hands-on therapy and exercise prescription with appropriate progressions. They would focus on soft tissue release therapy, joint mobilisations, dry needling, and prescribed independent exercise program for long-term management and injury reduction. He also recommended an additional physio-led and supervised exercise class inclusive of strengthening and reformer Pilates exercises to build up overall body strength.

Ms Charters wrote that the Applicant had been diagnosed with three rare diseases which were lifelong, incurable, and can only be managed: EDS, narcolepsy and specific antibody immune deficiency. The latter two are managed with “drugs etc” and “are not the main issue for applying” for NDIS assistance. EDS requires the most treatment “that is not covered adequately by mainstream funding”. EDS are a group of rare inherited conditions that affect connective tissue which provide support to skin, tendons, ligaments, blood vessels, internal organise and bones. People with EDS have joint hypermobility and loose, unstable joints that dislocate easily. EDS is likely to affect a sufferer in different ways through their lifetime and may be diagnosed with many other conditions known to occur in those with EDS.
Ms Charters wrote that without regular physical therapy and exercise, the Applicant’s mobility could become compromised and noted that some members of the EDS community use mobility aids from walking sticks to wheelchairs. She summarised the financial costs required for the Applicant to keep herself “healthy” and estimated an after-tax cost of $14,000, including $8,000 for physiotherapy, “at least once a week and ideally twice per week”. She noted that Pilates and gym membership “are not funded through any mainstream service”.
The T Documents contained NDIA Interaction Notes with Mr Zhang dated 24 September 2019. He said that it had been difficult to see the Applicant recently due to financial concerns. She often accessed therapy for symptomatic relief but was not able to engage with physiotherapy on a consistent basis. Therapy so far had focused on building strength and mobility to ensure that she is able to participate in activities of daily life to the best of her ability. She was compliant with the exercise programs which focussed on improving baseline strength and posture. He recommended two dynamic sessions per week in addition to a fortnightly one on one physiotherapy session to focus on strength training and ensuring she was on track with her exercises. That level of support would improve her functioning significantly. In the past, she has seen great improvement when she has been able to access physiotherapy consistently.
In summary, the NDIS Interaction notes with Ms Charters dated 24 September 2019 record that Ms Charters considered that intervention now will give the Applicant a greater chance of leading a normal life by managing but not curing her symptoms. Without it, she will most likely end up in a wheelchair.
Interaction notes with the Applicant of 26 September 2019 reported that the Applicant said that she needs physiotherapy three times a week. The NDIS representative noted that the main issue was whether or not the NDIS is the most appropriate support system for her needs because the treatment is considered to be clinical support which is more appropriately provided by the health system. The Applicant said that the health system is inadequate. She needs physiotherapy three times a week. With her private health funding and additional care plan, she usually runs out of funding within three months.
Evidence provided to the Tribunal
The Applicant applied to the Tribunal on 17 October 2019. In August 2019, the Applicant had suffered a disc protrusion at C6 which Dr Wong, neurosurgeon, addressed in his report dated 28 January 2020. He described the condition as “Cervical spondylosis (degenerative discs in the neck)”. She first had symptoms of neck pain with radiation to her arm consistent with right C6 nerve impingement in September 2019. He noted that her EDS was attended to by her rheumatology specialists and reported that that condition is stable. Her CS had slightly improved, but the Applicant continued to have neck stiffness and neck pain which was impairing her daily activities and work. Her treatment for that condition was a corticosteroid injection in September 2019 with mild improvement and physiotherapy from that time “and this needs to be ongoing”. The Applicant had been compliant with all recommended treatments.
Dr Wong believed the Applicant’s current treatment was appropriate.
In view of her [EDS], surgical treatment for her neck at her age would be associated with higher risks of causing long-term instability in her spine, or potentially, have the effect of accelerating her spinal degeneration and worsening cervical spondylosis.
Dr Wong stated that CS is “generally thought to be a degenerative condition” and he considered that condition and EDS “to be permanent conditions that will not be cured. Both disease processes are chronic conditions that will not reverse”.
The Respondent filed reports from Dr Bain Shenstone, Consultant Rheumatologist, dated 27 August 2019, 6 October 2019, and 29 December 2019 which were produced under summons.
Dr Shenstone reported that on 23 August 2019 the Applicant had reported right arm pain and dysaesthesia with no specific precipitant. She presented at Concord Hospital and was given a referral for physiotherapy and analgesia. Dr Shenstone organised an MRI scan of the cervical spine and prescribed Neurontin 100 mgs.
In the 29 December 2019 report, Dr Shenstone listed the Applicant’s rheumatology conditions as: common variable immunodeficiency with predominant abnormalities of B-cell numbers and function (CVID), hypermobility syndrome, ?fibromyalgia, narcolepsy and POTS. In the December report, the doctor reported her current rheumatology medications were one Naprosyn Tablet 250 mg and two Neurontin Capsules 100 mg. He commented that the arm dysaesthesia and paraesthesia had improved but she still had right sided neck pain and that her other musculoskeletal symptoms remained essentially the same. “She really is on maximal treatment that she will be able to tolerate given the concomitant issues of narcolepsy in particular”. He could only suggest that the Applicant continue with her current regime.
Associate Professor Riminton wrote a report dated 28 November 2019. The Applicant was very despondent about her current medical problems. She was in considerable pain, particularly related to a right C6 radiculopathy but also musculoskeletal pain from her hypermobile skeleton. She was doing well on subcutaneous immunoglobulin replacement therapy for her immunodeficiency, although she had had a lower respiratory tract infection requiring three courses of antibiotics.
Professor David Barnes, Respiratory & Sleep Physician, wrote a report dated 15 May 2020. He had treated the Applicant for her narcolepsy for a number of years. In his opinion, the Applicant was already using the supports that were available and they are not likely to reduce her future needs for supports in relation to her impairment. He believed that she is on the best medication currently available and the only way that she may show improvement is if a better medical therapy becomes available for her condition.
During cross-examination of Ms Charters, a report from Dr Roberto Russo dated 2 May 2020 addressed “Sir/Madam” was referred to. Dr Russo initially saw the Applicant in 2010 and most recently in April 2020. His report was in the form of questions and answers. It appears that it was prepared in response to a letter from the Respondent’s lawyers to Ms Charters dated 20 December 2019 seeking further information, which appears in the material produced in response to a summons to Dr Russo.
Dr Russo had diagnosed hypermobility spectrum disorder which in his opinion was related to heritable disorder of connective tissue. He believed that the Applicant has a hypermobility variant of EDS for which she meets the 2017 international criteria for the syndrome.
He had also diagnosed chronic pain syndrome/fibromyalgia which is likely related to the connective tissue disorder, although an entity of itself contributing to the symptoms experienced by the Applicant.
The hypermobility spectrum disorder is a heritable condition present since birth. The symptoms began in the Applicant’s pre-adolescent youth and have included the pain syndrome. The cause of her condition is genetic, although the testing had not identified the genetic abnormality but that does not exclude the diagnosis.
The Applicant’s condition will persist lifelong. She is at an increased risk of developing degenerative joint disease which in time will likely add to her symptoms. Dr Russo anticipated that the Applicant will would always suffer pain that will likely be of variable severity. He anticipated that the Applicant would continue to have associated symptoms arising from the chronic pain, including psychological effects and an adverse effect on her social functioning.
Dr Russo wrote that treatments are directed to managing symptoms in order to maintain and optimise function and to anticipate, identify and manage any secondary complications of the conditions as well as the treatments. He listed treatments that had been “implemented over the years” which “have included but are not limited to”;
a.    Exercise therapy, including Hydrotherapy
b.    Analgesia, including various options such as NSAIDs, Neuropathic medications.
c.     Physiotherapy and other physical therapies
d.    Psychological therapy
e.    Multidisciplinary pain clinics.
f.   Corticosteroid injections
g.    Supportive braces and bandages
h.    Non-pharmacological strategies of pain management.
Despite these treatments, which she has been engaging with for many years, [the Applicant] continues to experience significant pain which she describes affects her function, physically, functionally, and socially.
Dr Russo was not aware of any untried treatments which are likely to have any “differential benefits to those already trialled”.
The Applicant provided an undated statement to the Tribunal filed on 28 May 2020 and gave oral evidence. She set out her diagnoses of EDS, narcolepsy, fibromyalgia, scoliosis, mitral valve prolapse and orthostatic intolerance (tachycardia). She linked them to EDS.
She requires 15mg of Dexamphetamine every 4 hours during the day for her Narcolepsy, otherwise she cannot function cognitively at a high level and often falls asleep. Her medication lasts until about 6 pm, after which she is too exhausted to function properly. She has 12 hours per day of cognitive functioning, a much smaller window in which to do things than other people. However, the impact of EDS on her functioning means that it is not possible for her to get everything done in that 12-hour window. Once to two or three times a week, the medication does not work as well. She becomes exhausted, irritable, stressed, and frustrated, suffers memory lapses, struggles to say a sentence or forgets everyday words. Her brain feels like its “browning out” or “dimming”. She cannot get things done during those times.
The Applicant finds that regular physiotherapy, Pilates, and swimming help to strengthen and maintain her body. Strengthening her muscles combats her hypermobility. She has a long history of doing physiotherapy, aerobic and strengthening exercise recommended by healthcare professionals for pain and maintaining mobility.
Despite her treatments and therapies, her pain and fatigue are still present and have a big impact on her life and functioning.
She wrote that her rheumatologist told her that there is no medication that can help with her chronic pain and recommended ongoing, constant physiotherapy, swimming, and Pilates.
She usually attends physiotherapy once or twice a week for which she pays. It was on hold during COVID-19. She was out of pocket $60 each session and had run out of private health insurance and was paying $100 each session. She said that she is “required” to have ongoing physiotherapy and cannot afford the cost for this indefinitely.
Due to the lack of stability in her joints and hypermobility, the Applicant’s physiotherapist has recommended that her Pilates be physio-led in a studio, with one instructor to four customers. This allows the instructor to provide correction and advice to her because she tends to over-stretch joints without realising, which can lead to injuries. She cannot afford the $40 a session cost.
She said that she requires someone to help her exercise in a gym because of the high risk of injury due to hypermobility.
The Applicant described the impact of her disabilities from EDS and narcolepsy. They included stiffness and pain on getting up, and waking with acute, sharp, and stabbing pain in her ribs which is exacerbated by movement, including breathing. That pain sometimes goes away after a few hours or sometimes she needs to see a physiotherapist.
She described past dislocations of her shoulder and her knee. She experiences dislocations from general day to day activities and has to be very careful. She said that her most recent injury was a prolapsed C5/C6 disc in her cervical spine in (August) 2019 while drawing at a live drawing art class.
The Applicant’s ribs regularly sublocate and shift around because of EDS and cause issues for her shoulders and worsens the day-to-day pain, particularly in her neck.
Because of the impact of her disabilities caused by EDS and narcolepsy, she decided to stop living with her partner in order to be within walking distance of work and essential amenities such as shopping centres. That relationship has since ended.
The Applicant chose a motorbike rather than a car for transport because her medication does not work 100% of the time. She feared that she may injure someone if she drove a car.
Living on her own has presented challenges because EDS limits what the Applicant is able to do physically at home, work and for leisure. Pain causes exhaustion. She struggles with ordinary everyday tasks. She struggles to do her laundry, cook meals, and clean because of pain and exhaustion and generally cannot complete them. She cannot style her hair or lift more than 5 kgs. She relies on other people to assist with any lifting tasks.
During cross-examination, the Applicant said that she attends to personal hygiene, does small things around the house, and can prepare a meal when necessary, assuming she does not fall asleep. She does not have a plastic chair in the shower. When asked about that, the Applicant said “No 29 year old wants to have a plastic chair in their shower.”
The Applicant struggles to wake up and get out of bed. She never feels rested. She will not use the stove in the morning because she has fallen asleep on occasions with the gas burning.
The Applicant’s mother lives ten minutes away and assists her with shopping, cleaning, laundry, and moving things around the house. She comes over at least once a week.
On average, the Applicant has only six good days a month when she tries to do as much as possible around the house.
The Applicant’s social life has been impacted by her disabilities. She used to enjoy going out but “as I have gotten worse and my pain has gotten worse it’s been much harder to go out”, and people have stopped inviting her. She was spending a lot of time with her then partner and mother.
The Applicant wants to remain as independent as possible, contribute as a member of society and continue to be employed. Her therapies are expensive, and she cannot keep paying for them. She is now in the management stage of her illness which is very expensive. Medicare does not fund the frequency of the therapies she requires. Support at home would allow her to get everything done and have some social interaction. She wrote that her relationships with her mother and then partner would benefit if she did not “have to rely on them for everything and could do some fun things with them”.
During cross-examination, the Applicant said that she has year around access to a heated swimming pool at her current workplace which closed during the COVID-19 pandemic in 2020 but reopened late that year. She uses it as much as she can. She had worked throughout COVID-19. She would not have access to the pool if she did not work there. She associated the August 2019 recent disc prolapse in her cervical spine to her EDS. She said that she was doing very little physical activity when it occurred. She was drawing in a live drawing class. She conceded that before that event she was doing physiotherapy to the extent recommended by her physiotherapist.
The Applicant said that she had been shown exercise routines over the years, she can understand what the various physiotherapists and exercise physiologists have said about managing her condition, and she followed their advice. She took up Pilates because her mother started doing it and when she asked the physiotherapists about it, she was told to try it. She found that it worked quite well. She did it on and off and more regularly around 2015 but stopped due to COVID-19 and her prolapsed disc. She was hoping to start again and had been doing some at home. She tried online, but she needs someone in the room with her because she does not know the end or range of motion and it is pointless if you use the wrong muscle groups.
The Applicant acknowledged that many doctors recommended braces to control her rib subluxation problem.
The Applicant said that her condition was worse in 2012 because then she was fighting to stay out of a wheelchair, which she has continued to do. The prolapsed disc in August 2019 caused a lot of anxiety and depression about her body failing and a lot more pain, which is her main problem, rather than dislocations. Anxiety is a huge problem. The Applicant said that she had been unable to build up strength in her joints over the last few years because of the prolapsed disc and COVID-19.
Doctors have encouraged the Applicant to be physically active within the limits of her condition. Muscle bulk around the joints would make her less susceptible to subluxations and dislocations. Swimming was advocated by the Applicant’s doctors because it is a low impact exercise, and she enjoys it and feels better when she swims. Despite the positive outcomes of her physical activity, the Applicant suffered the prolapsed disc in August 2019.
The main objective of the Applicant and her mother when she applied to the NDIS was to access funding for physiotherapy to manage and maintain her function and minimise pain. Physiotherapy was the Applicant’s major cost in 2019 when she attended two or three times a week and ran out of health insurance by May. The Applicant did not know what the top cover or benefit was. The GP can only authorise 10 free sessions. Her mother helps her pay.
The Applicant had not inquired whether her health fund covered gym membership or Pilates in a gym setting. Her Pilates is offered in a gym setting of one instructor to 20 to 40 people. She had not inquired whether she could be observed.
The Applicant agreed that her physiotherapist recommended education and that she had been educated over a number of years about how to do exercises. She does not know when an exacerbation is coming. They can occur regardless of what she is doing or her level of fitness or health. She attends to them pharmacologically and with physiotherapy. The Applicant’s opinion is that physiotherapy is beneficial for the management of pain and mobility even without a flare up. She said that when she cannot attend physiotherapy, more problems appear. She expects that she will always need physiotherapy to help manage her condition.
In cross-examination, the Applicant talked about transport. She has had a 125 cc motorbike for five years which she can use. There is a bus stop outside her door and the train is a 15 minute walk away, which she can do depending on whether she has had a “flare up”. Standing for a long period on a bus or train can cause an issue because of tachycardia. She can become faint. Jerky movements can also cause an issue. She is alright if she gets a seat. She was unable to use public transport during COVID-19 because of her immune deficiency.

The Applicant does not see bumpiness or risk of riding a motor bike as an issue. She did not see that it caused pain.
During cross-examination, the Applicant said her neck pain was worse in June 2020, when she used Cannabidiol (CBD) and Panadeine Forte for pain control. She stopped using Neurontin. She has Panadeine Forte in the house and takes it as needed. She only requests prescriptions when she needs to. The pain is still there. During COVID-19 she was trying not to take narcotics. At 29, she does not want to spend her life on them.
During COVID-19, the Applicant’s swimming, Pilates, and physiotherapy (for a period) were reduced. She walked and was doing her best to do home exercises. She had no subluxations or dislocations, but pain continued and will continue whatever she does.
Ms Charters
Ms Charters provided to the Tribunal a statement dated 28 May 2020. She set out the Applicant’s medical history and treatment, the Applicant’s needs for therapies for her EDS, the impact of her disabilities, the practical and financial assistance she gives to the Applicant, and how she hopes the NDIS can help the Applicant to prevent further deterioration.
Ms Charters said that Connective Tissue Dysplasia (CTD) clinic at Westmead Children’s Hospital diagnosed The Applicant with “EDS - Hypermobile type” and recommended that the Applicant continue swimming (three times a week), perform a home-based muscle strengthening exercise routine, use anti-inflammatory and pain killer drugs as required, and attend regular physiotherapy. All therapies were aimed to increase mobility and muscle strength and reduce pain. The interventions reduced the number of dislocations the Applicant suffered and helped with pain management.
The Applicant was diagnosed with narcolepsy when she was 18 and prescribed dexamphetamine. There are no further supports or interventions for that condition.
Over the past ten years, the Applicant’s pain and fatigue have steadily worsened.
It is currently recommended that the Applicant attend physiotherapy as much as possible, ideally three times a week, and undertake muscle strengthening exercises such as Pilates and the gym, however she requires support to attend such activities due to her risk of injury. The Applicant also tries to swim regularly but COVID-19 had prevented that.
In her opinion, the Applicant would be in a much worse condition without access to the therapies she seeks, and her functioning would decline without them which would detrimentally affect her mental health. She had noticed the Applicant’s body changing over the years and feels that it is crucial that the Applicant gets the help that she needs to avoid further deterioration of her condition and increasing pain and fatigue.
The therapies the Applicant requires are very expensive and not available through the healthcare system.
During her oral evidence, Ms Charters said that the Applicant can shower, walk and work. She cannot do housework to a reasonable level, finds it hard to cook and shop and rides her motor bike for short local trips. For trips more than six kilometres, Ms Charters takes her. She also helps the Applicant to shop. The Applicant’s pain range is five to seven most days. The physiotherapist keeps the pain within that range.
Ms Charters believes that the Applicant is now in the pain phase of EDS, with fewer dislocations and she has not suffered a subluxation for some time. She has had more physiotherapy because of pain.
Ms Charters was cross-examined about having been present during the evidence of the Applicant and Ms Brest, physiotherapist, and about discussions she had with the Applicant about the evidence. She said that she was not asked to not be in the hearing which was conducted remotely by videoconference. They did their evidence individually. She did not think cross-contamination was an issue if you were telling the truth.
She was questioned about doctors treating the Applicant. She said that there is no EDS expert in this country. Dr Riminton, immunologist, has been treating the Applicant most holistically. She said that Dr Robert Russo, rheumatologist, was the most recent doctor relating to EDS.
The Respondent’s counsel put to Ms Charters Dr Russo’s opinions expressed in his report of 2 May 2020: that there is no intervention that will change the underlying cause of EDS which is heredity; that the Applicant’s symptoms are present and continue despite treatments engaged in; and that she continues to suffer pain that affects her physical and social function.The Applicant’s mother accepted each element of the doctor’s opinion. She did not agree that Dr Russo appeared to be unaware of the physiotherapy being requested.
Ms Charters was questioned about which medical specialist was recommending physiotherapy for EDS. She referred to recommendations made by the Westmead Children’s and Adults’ Hospitals and international recommendations. She could not point to any specialist report making that recommendation. She agreed that it was an opinion formed on her and the Applicant’s experience over the years. She had been advised that the third stage of EDS is stiffness. When it was put to her that the disease was following its expected trajectory she agreed. When asked if her expectation was that in future regardless of interventions, the disease will transition into stiffness, the Applicant’s mother said that it was an unknown quantity but appeared to be the course of the disease.
Ms Charters conceded that the difficulties the Applicant had in May 2020 when she wrote her statement, including having a problem lifting her hands over her head, dressing, and being unable to lift more than five kilograms, were a result of the disc prolapse.
She was firm in her view that the Applicant had been unable to live independently from 2017 to 2019. She said that her then partner did a lot of shopping, cooking, washing, and cleaning because the Applicant slept because of her chronic fatigue overlaid on her narcolepsy. The Applicant had seen a doctor at the University of Sydney. She does not suffer from chronic fatigue syndrome.
Ms Charters was also asked about the Applicant wearing a bicycle helmet, given the cervical spine disc prolapse. She said that she had asked Dr Wong about that and he did not have problem with it.
In re-examination, Ms Charters said that during discussions with Dr Russo, he said to continue with physiotherapy as often as needed, ideally a couple of times a week.
Ms Brest, physiotherapist
Ms Brest, physiotherapist, provided a letter dated 6 July 2020 and gave oral evidence. She stated the following in her letter.
The Applicant had been a patient of the practice in two different locations since 2015. Ms Brest had been treating the Applicant since January 2019, had been her primary provider since 25 March 2020 and had treated the Applicant 20 times from then until 6 July 2020. She listed the Applicant’s primary impairments, which included global joint hypermobility with increased susceptibility to subluxation/dislocation, most notably at upper limb, (shoulder) and poor proprioception of end of range during functional tasks. Poor proprioception is a lack of awareness of where the body is in space.
Ms Brest listed the treatment goals:
-    acute symptomatic relief for multiple flare ups of the lower/ upper limb and cervical spine as a result of the ongoing effects of hypomobility (sic) secondary to Ehlers Danlos Syndrome, in addition to the effects of C5/C6 Disc prolapse and fibromyalgia.
-    Increased muscular strength and endurance of the upper and lower limb
-    improved perceived stability of bilateral (R>L) shoulder complex
-     improved mobility throughout cervical and thoracic spine.
-    Education regarding best practice for the long-term management of her condition, support to empower Meghan to self-manage her impairments where possible to improve her activity limitations and reduce her participation restrictions.
Ms Brest addressed the question of whether the Applicant’s impairments resulted in substantially reduced functional capacity to undertake activities.
Ms Brest did not consider that the Applicant’s impairments impact her capacity for communication or learning.
The Applicant had expressed to Ms Brest on multiple occasions that she felt that her primary impairments caused social isolation because she was exhausted by daily activities (relating to poor strength and endurance) and does not feel adequately rested (Narcolepsy) which limits her interaction with family and friends. In addition, she prioritises physical and therapeutic exercise and appointments over social interaction to ensure she is able to function at the required level to attend work and complete activities of family living. That has affected her mental health.
The Applicant had full independent mobility and was able to undertake ordinary activities of daily living without the use of additional aids. She was impacted daily by chronic and acute pain relating to flare ups of primary impairments which impacted her capacity to leave home and move about the community. The Applicant works full-time as an IT specialist but had to get up from her desk one to two times an hour to stretch and exercise. Ms Brest recommended an ergonomic assessment and provision of appropriate equipment.
The Applicant was fully independent with activities relating to personal care, however, chronic and acute pain relating to flare-ups of primary impairments limits her capacity for pain free function. The Applicant regularly accessed multiple health services (physiotherapy/nutrition) to maintain her functional capacity to live independently.
In relation to self-management, Ms Brest said that the Applicant has sufficient cognitive capacity to organise her life, plan and make decisions and is able to take responsibility for herself. She has a full-time job, lives independently and provides her own transport. Pain and limited strength and endurance impact her capacity. She accesses services privately which collectively support her independent self-management.
Ms Brest recommended the following supports for the Applicant:
Short term:
·     2 x sessions of manual therapy and physio led exercises for management of acute exacerbation of pain/immobility/dysfunction (flare up) for 1-2 weeks to maintain independent functional capacity. Ideally with optimal preventative management flare-ups will be limited.
Medium - long term (ongoing maintenance and Prevention):
·     weekly sessions of 1x physiotherapy for manual therapy (joint mobility) and guided exercises to maintain mobility and mitigate risk of flare ups.
·     Additional to 1x session of Physiotherapy, Meghan would benefit from 1x session guided exercise (exercise physiologist OR instructor lead Pilates class) to work on: strength and endurance of upper limb/ lower limb, balance in standing and four-point kneeling for improved upper and lower limb dynamic stability.
o It is important that this instructor is qualified with the capacity to modify activities/ correct form for injury prevention relating to hypermobility and the effects of Ehlers Danlos syndrome.
·     I would additionally recommend a review with a nutritionist 2 x per year to supplement her performance.
Ms Brest gave the following response to the question “In your opinion would the provision of these supports now likely reduce Meghan’s future need for supports in relation to her impairment(s)?”. It was inappropriate to expect that the Applicant would not need ongoing support in relation to her impairments because there is no cure for the effects of EDS and it is expected that musculoskeletal injury may result as a secondary complication. However, if managed correctly, the risk of recurrent exacerbation is mitigated and when flare ups occur, it is within a supported framework so that minor flare ups do not escalate to severe injury.
Ms Brest noted in a record for 29 June 2020:
Poor compliance with home exercises for strength, but is completing some mobility and home pilates style exercises – wanting to get back into swimming but school pool remains shut d/t COVID
From March 2020 to 25 August 2020, Ms Brest had treated the Applicant 29 times over 23 weeks. During cross examination, Ms Brest agreed that in every consultation the predominant consideration was the cervical spine and that she had done everything she could to educate the Applicant about exercises she should/should not do. There had not been consistent progression. Ms Brest said that there could be non-compliance. The Applicant does it on her own and does not feel she understands it.
When challenged about 12 months of treatment not doing anything for the Applicant’s condition, Ms Brest said that the missing link is the additional session. Chronic conditions are really tricky. It is a life-long condition. The Applicant manages activities, goes to work and when she has not had treatment, has had to take time off work. Ms Brest had seen her weekly from August 2020 to 25 March 2021, apart from when she cancelled or did not arrive. Ms Brest said that she had tried to treat the Applicant as proposed in her report but has not succeeded. The Applicant has been prioritising her pain relief and has not come back for the second treatment.
Ms Brest agreed that in other cases, compliance with prescribed exercises outside the clinic accorded with outcome. There was generally control of symptoms. She agreed that in this case she seemed to have lost perspective.
In re-examination Ms Brest said that she did not think that the Applicant could do strength building exercises at home or she would have done them. Her lack of proprioception would impact her capacity to do exercises unsupervised.
Ms O’Sullivan, Occupational therapist
Ms O’Sullivan, occupational therapist, provided a report to the Tribunal. She did not give oral evidence. She assessed the Applicant on 3 March 2020. At that time the Applicant was living with her partner. Ms O’Sullivan noted the Applicant’s multiple conditions “which have combined to cause her disability” including hypermobility, narcolepsy, and orthostatic intolerance. She related C5/6 spinal stenosis to the joint hypermobility condition.
Ms O’Sullivan used the World Health Organisation Disability Assessment Schedule (WHODAS 2.0) to look at the overall impact of the Applicant’s impairment on her day-to-day functioning and the Adaptive Behaviour Assessment System (ABAS-3) to look at the Applicant’s functioning across a variety of domains which gives a picture of her functional capacity.
She then considered the functional impacts on the areas of mobility, self-care, social interaction, self-management, and the supports the Applicant required in each of those areas.
Ms O’Sullivan recommended therapeutic and assistive technology supports.
The therapeutic supports were: intermittent occupational therapy, maintenance physiotherapy (one hour, two to three times per week), psychology fortnightly, a support worker for four hours per week to help with household chores and organisational activities.
Ms O’Sullivan stated that the assistive technologies required by the Applicant included, but were not limited to: shower chair/stool, jarkey, cankey, Zyliss 5 in 1 opener (for bottles), kitchen stool for meal preparation, kettle tipper, hair dryer stand, long handled hair brush and light weight pots and pans.
Ms O’Sullivan wrote that there is no physiotherapy available for the Applicant’s impairment through the NSW Department of Health. There are no therapists or services with the health system who are suitably experienced to work with the Applicant, as there are no connective tissue disorder services available or funded in Australia. Services are fee-for-service through appropriately skilled private practitioners.
Consideration
The principal support in contention in the proceedings was physiotherapy. Pilates and gym classes are also relevant.
Can the disability caused by CS be taken into consideration?
Before considering the merits of the subsection 25(1)(b) question, it is necessary to decide whether CS and the disability arising from the CS can be considered. It is likely to be permanent as required by subsection 25(1)(a), based on Dr Wong’s evidence.
The Applicant put three arguments. The first relied on what was said to be Deputy President Humphries’ consideration of the meaning of “disability” as distinct from “impairment” in McLaughlin and National Disability Insurance Agency.[2] That case was concerned with the interpretation of section 34 of the Act. The Applicant sought a number of supports that did not relate to the impairments in respect of which access to the NDIS had been granted.
[2] [2021] AATA 496 (“McLaughlin”).
The relevant rule in that case was 5.1(b) of the Supports Rules which provides that a support will not be provided or funded under the NDIS if “it is not related to a participant’s disability” (emphasis added).
Deputy President Humphries had to decide, as a preliminary issue, whether the Tribunal had jurisdiction to review a decision to approve supports under section 33(2) of the Act if the supports did not relate to the impairments through which the person gained access to the NDIS. It is significant that the view of the NDIA in that case was that the term “disability” in rule 5.1(b) was not limited to the particular impairments which qualified a person for access to the NDIS under the “disability requirements” under section 24. Deputy President Humphries found accordingly.
The Applicant argued that the same interpretation should be applied to disability in subsection 25(1)(b) of the Act.
Subsection 25(1)(b) requires the decision-maker to be satisfied that “the provision of early intervention supports for the person is likely to benefit the person by reducing the person’s future needs for support in relation to disability”.
The Applicant pointed out that in contrast to subsection 25(1)(a), subsection 25(1)(b) does not refer to a person’s “impairment” but instead, requires consideration of a person’s “disability”. The provision does not require the disability to be “attributable to” one or more impairments, as subsection 24(1) requires. Therefore, the Applicant argued, “disability” in subsection 25(1)(b) does not have to be attributable to an impairment found in subsection 25(1)(a).
Chapter 3 of the Act is entitled “Participants and their plans”. Sections 24 and 25 are found in Part 1 of that Chapter which is entitled “Becoming a participant”. They are two of the access criteria specified in subsection 21(1) of the Act.
Part 2 of Chapter 3 is entitled “Participants’ plans”. Section 34, with which Deputy President Humphries was concerned, is found in Division 2 of Part 2 which is entitled “Preparing participants’ plans”. That provision is concerned with specifying general and reasonable and necessary supports in a statement of participant supports
The decision in McLaughlin does not assist to decide whether “disability” in subsection 25(1)(b) must be one that is related to the impairments found pursuant to subsection 25(1)(a) of the Act. It is a matter of statutory construction as was McLaughlin.
Section 25 sets out “early intervention requirements” that qualify a person to access the NDIS. The provisions of subsection 25(1) are conjunctive. They relate to each other and each has to be satisfied. Subsection (1)(a) is concerned with impairment, subsection (1)(b) is concerned with disability flowing from impairment(s), and subsection (1)(c) is concerned with the impact of the person’s impairment(s) found in subsection (1)(a) upon functional capacity. They are cascading provisions.
The word “impairment” appears in subsections 25(1)(a) and (c) but not in subsection 25(1)(b). It is implicit that the “disability” in subsection 25(1)(b) is disability flowing from the impairment found pursuant to s 25(1)(a), the impact of which on the person’s functional capacity is the subject of subsection 25(1)(c).

Rules are not to be used to determine the construction of a statute. However, it is relevant that rule 6.9 of the Rules, which applies to the consideration of subsection 25(1)(b), is consistent with the above interpretation. It states that in deciding whether provision of early intervention supports is likely to benefit the person in the way mentioned in paragraph 6.2(b), the CEO is expected to consider:
(a) the likely trajectory and impact of the person’s impairment over time; and
(b) the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity and in reducing their future needs for supports; and …
[Emphasis added.]
The proper construction of subsection 25(1)(b) does not allow the disability flowing from CS to be considered.
Following an exchange with the Tribunal during closing submissions, the Applicant put faintly a second argument that disability caused by CS could be considered because it is related to EDS, as fibromyalgia is. Dr Russo’s evidence was that fibromyalgia is likely related to EDS, although an entity itself.
Dr Wong clearly distinguishes between the conditions of EDS and CS. He said that CS was generally thought to be a degenerative condition. He wrote that in view of the Applicant’s EDS, surgical treatment for her neck at her age would be associated with higher risks of causing long-term instability in her spine, or, potentially, have the effect of accelerating her spinal degeneration and worsening cervical spondylosis. Dr Wong considered CS and EDS “to be permanent conditions that will not be cured. Both disease processes are chronic conditions that will not reverse”.
Dr Russo’s 2 May 2020 report does not refer to the Applicant’s diagnosis of CS. He did express the opinion that the Applicant is at increased risk of developing degenerative joint disease which in time will likely add to her symptoms. Her CS is consistent with that opinion based on Dr Wong’s evidence that it is a degenerative disease.
The three reports of Dr Bain Shenstone dated 27 August 2019, 6 October 2019, and 29 December 2019 are summarised at [44] to [46]. On 23 August 2019 the Applicant had reported right arm pain and dysaesthesia with no specific precipitant. She presented at Concord Hospital and was given a referral for physiotherapy and analgesia. Dr Shenstone organised an MRI scan of the cervical spine and prescribed Neurontin 100 mgs. In the December report, Dr Shenstone commented that the arm dysaesthesia and paraesthesia had improved but she still had right sided neck pain and that her other musculoskeletal symptoms remained essentially the same. He was not considering EDS.
The medical evidence does not support a finding that CS is relevantly related to EDS such that the disability caused by it can be considered although it was not diagnosed until after the application was lodged and was not specified in the application for access. The Applicant is at a higher risk of developing degenerative disease because of EDS, however, they are separate conditions.
The Applicant raised a third argument in the written submissions in reply. It may be summarised as follows:
(i)The task of the Tribunal is to make the correct or preferable decision on the material before it.[3]
(ii)The Tribunal is not bound by the grounds for review asserted by an applicant at some earlier point of time.
(iii)The Tribunal is required to determine the substantive issues raised by the material and evidence before it and is not to limit its determination to the case articulated by an applicant.[4]
(iv)By the operation of section 99 of the Act, the review is of a decision under section 20(a) that the Applicant does not meet the access criteria set out in section 21 of the Act, which relevantly include the early intervention criteria set out in section 25.
(v)The Tribunal would be satisfied that the Applicant has the permanent impairment CS.
[3] Shi v Migration Agents Registration Authority (2008) 235 CLR 286 (“Shi”) at [34]-[38] (Kirby J); [98]-[99] (Hayne and Heydon JJ) and [141]-[143] (Kiefel J).
[4] Grant v Repatriation Commission (1999) 57 ALD 1 at [18].
While propositions (i) to (v) may be accepted, they do not squarely address the fact that the primary decision made on 4 February 2019 pursuant to section 20(a) of the Act that the Applicant did not meet the access criteria, was made before the disc protrusion had occurred.
The reviewable decision made pursuant to section 100 of the Act was made on 30 September 2019 after the disc protrusion and consequential diagnosis of CS had occurred. It was reviewing the primary decision.
The Tribunal’s jurisdiction is governed by section 25(1) of the Administrative Appeals Tribunal Act 1975 (Cth) (the AAT Act) and section 103 of the Act. The Tribunal is reviewing the decision made pursuant to section 100 of the Act.
Has the Tribunal jurisdiction to consider an impairment that as a matter of fact did not exist when the primary decision was made?
The Tribunal stands in the shoes the internal reviewer and determines for itself the decision which should be made under section 100 of the Act.[5]
[5] Frugtniet v Australian Securities and Investments Commission (2019) 266 CLR 250 at [51] (Bell, Gageler, Gordon and Edelman JJ).
The Tribunal’s power on review is set out in subsection 43(1) of the AAT Act:
(1) For the purpose of reviewing a decision, the Tribunal may exercise all the powers and discretions that are conferred by any relevant enactment on the person who made the decision and shall make a decision in writing:
(a) affirming the decision under review;
(b) varying the decision under review; or
(c) setting aside the decision under review and:
(i) making a decision in substitution for the decision so set aside; or
(ii) remitting the matter for reconsideration in accordance with any directions or recommendations of the Tribunal.
The Tribunal’s decision is deemed to be a decision of the person who made the decision under review.[6]
[6] AAT Act, subsection 43(6).
Subsection 100(6) of the NDIS Act provides:
The reviewer must, as soon as reasonably practicable, make a decision:
(a)       confirming the reviewable decision; or
(b)       varying the reviewable decision; or
(c)       setting aside the reviewable decision and substituting a new decision.
In Shi, Kiefel J said:
[133] …As Sheppard J said in Secretary to the Department of Social Security v Riley, it is not possible to apply s 43(1) to the facts of any case without determining, first of all, what is the decision under review. It may therefore be appreciated that the decision, and the statutory question it answers, should be identified with some precision, for it marks the boundaries of the review.
…
[142] In considering what is the right decision, the Tribunal must address the same question as the original decision-maker was required to address. Identifying the question raised by the statute for decision will usually determine the facts which may be taken into account in connection with the decision. The issue is then one of relevance, determined by reference to the elements in the question, or questions, necessary to be addressed in reaching a decision. It is not to be confused with the Tribunal's general procedural powers to obtain evidence. The issue is whether evidence, so obtained, may be taken into account with respect to the specific decision which is the subject of review.
[143] Where the decision to be made contains no temporal element, evidence of matters occurring after the original decision may be taken into account by the Tribunal in the process of informing itself. Cases which state that the Tribunal is not limited to the evidence before the original decision-maker, or available to that person, are to be understood in this light. It is otherwise where the review to be conducted by the Tribunal is limited to deciding the question by reference to a particular point in time. [Citations omitted.]
Ultimately, the question in this case is whether on 4 February 2019 the Applicant met the access criteria under the Act. She could not have met the access criteria based on CS which did not exist at that time.
If the Tribunal were to set aside the reviewable decision and in substitution decided that the Applicant met the access criteria, that decision which would take effect from 4 February 2019 when the Applicant had not suffered the disc protrusion. That is not a course open to the Tribunal.
Subsection 25(1)(b) and rule 6.9
The Tribunal did not understand the Applicant to press narcolepsy as a permanent condition that satisfied subsection 25(1)(b). For certainty, Professor Barnes’s evidence was clear that there is no other treatment currently available that may assist the Applicant by reducing her future needs for supports in relation to the disability arising from narcolepsy which is fatigue.
As stated earlier, the principal support in contention was physiotherapy, although Pilates and gym classes were also raised. Ms O’Sullivan, occupational therapist, recommended a number of supports, listed at [125] and [126].
At the end of the oral submissions, the Applicant made an alternative submission that it was open to the Tribunal on the evidence to find that the current level of physiotherapy support reduced the Applicant’s future needs for support and therefore the current level of physiotherapy should be funded by the NDIA.
Dr Russo’s evidence about the likely trajectory and impact of the Applicant’s EDS over time was that EDS will persist lifelong and the Applicant will always suffer pain that will likely be of variable severity. He anticipated that she will continue to have associated symptoms arising from the chronic pain, including psychological effects and an adverse effect on her social functioning.
Dr Russo wrote that treatments are directed to managing symptoms in order to maintain and optimise function and to anticipate, identify and manage any secondary complications of the conditions as well as the treatments. He listed treatments that had been “implemented over the years”, set out at [54] and commented:
Despite these treatments, which she has been engaging with for many years, Ms Charters continues to experience significant pain which she describes affects her function, physically, functionally, and socially.
Dr Russo was not aware of any untried treatments which are likely to have any “differential benefits to those already trialled”. Dr Russo did not refer to the physiotherapy regime recommended by Ms Brest or to her report.
As set out above, Dr Wong’s opinion was the EDS was a permanent condition that will not be cured; it was a chronic condition that will not reverse.
Ms Charters and the Applicant said that sufferers of EDS can end up in wheelchairs or having to use mobility supports such as walking sticks. During cross-examination Ms Charters said that she believes that the Applicant is now in the pain phase of EDS, with fewer dislocations and she has not suffered a subluxation for some time. She has had more physiotherapy because of pain.
She said that she had been advised that the third stage of EDS is stiffness. When it was put to her that the disease was following its expected trajectory, she agreed. When asked if her expectation was that in future, regardless of interventions, the disease will transition into stiffness, Ms Charters said that it was an unknown quantity but appeared to be the course of the disease.
Addressing the potential benefits of early intervention on the impact of the impairment (EDS) on the Applicant’s functional capacity and in reducing her future needs for supports (rule 6.9(b)), the Applicant’s primary argument was as follows. The physiotherapy regime proposed by Ms Brest will develop muscle strength which would reduce pain and the frequency of “flareups”. The Applicant has not been able to follow that regime because she could not afford to. Her current level of physiotherapy has just “kept her head above water”. The proposed regime would be the best possible chance for the Applicant to maintain functionality over time, to enable her stay out of a wheelchair and to live with the greatest possible dignity as long as possible. If she does not have access to the supports, her condition will degenerate, and she would need more supports in the future.
In oral and written submissions, the Applicant relied on the medical evidence of Dr Tofts, which is summarised at [14] and of Dr Spies, which is summarised at [19]. Dr Tofts’ evidence is consistent with that of Dr Russo. The objective of the treatment, such as physiotherapy, is to minimise the disability caused by EDS, pain, and consequently maintain maximum function. Dr Spies was addressing orthostatic intolerance specifically.
During cross-examination, Ms Charters was questioned about which medical specialist was recommending the physiotherapy regime recommended by Ms Brest. She referred to recommendations made by the Westmead Children’s and Adults’ Hospitals and international recommendations. She could not point to any specialist report making that recommendation. She agreed that it was an opinion formed on her and the Applicant’s experience over the years. During re-examination, Ms Charters said that during discussions with Dr Russo, he said to continue with physiotherapy as often as needed, ideally a couple of times a week.
Dr Shenstone provided a referral to the Applicant for physiotherapy for her right arm pain and dysaesthesia in August 2019 and recommended that she continue that treatment in his report dated 29 December 2019. He did not relate those symptoms to EDS or refer to physiotherapy for EDS or to Ms Brest’s proposed regime.
Mr Zhang reported that the Applicant told him that her rheumatologist recommended Pilates for strengthening which she had been inconsistently participating in due to the cost of classes. In her statement, the Applicant wrote that her rheumatologist told her that there is no medication that can help with her chronic pain and recommended ongoing, constant physiotherapy, swimming, and Pilates.
The Applicant has been advised by various doctors since 2009 to exercise to address the impact of EDS and POTS (orthostatic intolerance) which has been related to EDS. The evidence shows that she has followed that advice. Over the years, amongst other treatments, she has received physiotherapy, swum regularly, and attended Pilates and gym classes from time to time. Such treatment reduces her pain and consequentially improves her functional capacity.
It is relevant that since the disc protrusion in August 2019, the Applicant’s complaints and physiotherapy treatment have related predominantly to the CS symptoms. However, accepting that Ms Brest’s proposal is directed towards EDS, including the conditions of fibromyalgia and POTS, the medical evidence does not support a conclusion that the provision of that proposed support is likely to benefit the Applicant by reducing her future needs for supports in relation to disability, which is primarily pain. Assuming that Dr Russo commented to Ms Charters and the Applicant about continuing with physiotherapy, the Tribunal is not persuaded that he was endorsing Ms Brest’s physiotherapy regime or that his opinion was other than that expressed in his report.
Neither the evidence nor the submissions in respect of the condition of scoliosis support a finding that the provision of early intervention supports for the Applicant is likely to benefit the Applicant by reducing her future needs for supports in relation to disability.
Ms O’Sullivan’s evidence was directed to the Applicant’s functional capacity. It does not assist on the issue of whether the provision of the supports she recommends are likely to benefit the Applicant by reducing her future needs for supports in relation to disability.
While the Applicant, Ms Charters and Ms Brest may genuinely believe that the proposed support is likely to benefit the Applicant by reducing her future needs for supports in relation disability, the medical evidence does not support that belief. There was no suggestion that Ms Brest had liaised with a doctor about that regime.
It follows that the Tribunal does not accept the Applicant’s second argument that the current physiotherapy treatment the Applicant is receiving is likely to benefit the Applicant by reducing her future needs for supports in relation to disability.
If, contrary to the view the Tribunal has come to, CS were a permanent condition which could be taken into account, the medical evidence does not support a conclusion that the provision of the proposed support is likely to benefit the Applicant by reducing her future needs for supports in relation to disability, which is pain.
Conclusion
For the above reasons, the Tribunal is not satisfied that the provision of early intervention supports for the Applicant is likely to benefit her by reducing her future needs for supports in relation to disability. The Applicant does not satisfy subsection 25(1)(b) of the Act and therefore does not meet the early intervention requirements.
It is unnecessary to consider the question posed by subsection 25(3) of the Act, whether that early intervention support for the person is most appropriately funded or provided through the NDIS, or more appropriately funded or provided through other specified general systems of service delivery or support services.
Decision
The reviewable decision made on 30 September 2019, which affirmed the decision made on 4 February 2019 to refuse the Applicant’s access request, is affirmed.

I certify that the preceding 183 (one hundred and eighty-three) paragraphs are a true copy of the reasons for the decision herein of Mrs J C Kelly, Senior Member and Senior Member M Griffin QC

.......................................[sgd].................................
Associate
Dated: 21 December 2021

Date(s) of hearing: 6 and 9 April 2021

Date final submissions received: 13 May 2021

Solicitors for the Applicant: N Bhagwat, Legal Aid NSW

Counsel for the Respondent: M Gollan, Seven Windeyer Chambers

Solicitors for the Respondent: S Miller, Sparke Helmore Lawyers

[2021] AATA 4762

21 December 2021

Key Legal Topics

Areas of Law

Administrative Law

Statutory Interpretation

Legal Concepts

Judicial Review

Statutory Construction

Standing

Remedies

Procedural Fairness

Jurisdiction

Date(s) of hearing:	6 and 9 April 2021
Date final submissions received:	13 May 2021
Solicitors for the Applicant:	N Bhagwat, Legal Aid NSW
Counsel for the Respondent:	M Gollan, Seven Windeyer Chambers
Solicitors for the Respondent:	S Miller, Sparke Helmore Lawyers