QTBR and National Disability Insurance Agency
[2021] AATA 1951
•28 June 2021
QTBR and National Disability Insurance Agency [2021] AATA 1951 (28 June 2021)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2019/3300
Re:QTBR
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Member W Frost
Date:28 June 2021
Place:Canberra
The Tribunal affirms the decision under review pursuant to subsection 43(1)(a) of the Administrative Appeals Tribunal Act 1975.
..............................[sgd]..............................
Member W Frost
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – disability requirements – cerebral palsy – congenital cytomegalovirus – epilepsy – neural migrational defects – microcephaly – developmental delay – congenital profound sensorineural deafness – whether the disputed supports requested by Applicant are reasonable and necessary pursuant to subsection 34(1) of the National Disability Insurance Scheme Act – whether requested supports are duplicates of other supports already funded by the National Disability Insurance Agency – decision under review affirmed.
Legislation
Administrative Appeals Tribunal Act1975 ss 42D, 43.
National Disability Insurance Scheme Act 2013 ss 3-4, 33-35, 100, 209.
National Disability Insurance Scheme (Support for Participants) Rules 2013.
Cases
Drake and Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 634.
Madelaine and National Disability Insurance Agency [2019] AATA 4025.
McCutcheon and National Disability Insurance Agency [2015] AATA 624.
McGarrigle v National Disability Insurance Agency [2017] FCA 308.
TKCW and NDIA [2014] AATA 501.
TYKL and NDIA [2021] AATA 135.
Secondary Materials
A. Ulate-Campos, F. Coughlin, M. Gaı´nza-Lein, I. Sa´nchez Ferna´ndez, P.L. Pearl, T. Loddenkemper, Automated seizure detection systems and their effectiveness for each type of seizure, Seizure, (Volume 40, pages 88-101).
Bibbo, Jessica, Kerri E Rodriguez, and Marguerite E O’Haire, Impact of Service Dogs on Family
Members’ Psychosocial Functioning, The American journal of occupational therapy : official
publication of the American Occupational Therapy Association 73.3 (2019): 7303205120, pages 1-11 < Amélie et al., Dog Alerting And/or Responding to Epileptic Seizures: A Scoping Review, PloS one 13.12 (2018): e0208280. < align="left">Including Specific Types of Supports in Plans Operational Guideline - Assistance Animals
Lundqvist, Martina, Jenny Alwin, and Lars-Ake Levin, Certified Service Dogs – A Cost Effectiveness Analysis appraisal, PLoS ONE 14.9 (2019): e0219911. < Martinez-Caja, Ana et al. Seizure-Alerting Behavior in Dogs Owned by People Experiencing Seizures, Epilepsy & Behavior 94 (2019), pages 104–111.
Operational Guideline – Planning – Deciding to include supports in a participant’s plan
REASONS FOR DECISION
Member W Frost
28 June 2021
INTRODUCTION
The Applicant, QTBR, is eight years old and, since 2016, a participant in the National Disability Insurance Scheme (NDIS). She has multiple significant impairments, including cerebral palsy and epilepsy, that require substantial support from her family, medical practitioners, the community and the NDIS.
In June 2018, the National Disability Insurance Agency (NDIA) approved a statement of participant supports for QTBR under the National Disability Insurance Scheme Act 2013 (NDIS Act). A subsequent decision of the NDIA in May 2019 regarding QTBR’s supports is the decision under review by the Administrative Appeals Tribunal (Tribunal) in this proceeding.
Despite the parties resolving issues regarding many disputed supports while QTBR’s application has been before the Tribunal, including during the hearing, there are a number of supports that remain in dispute in this proceeding, primarily the provision of an assistance animal in the form of a seizure alert dog in relation to QTBR’s epileptic seizures.
ISSUE
The Tribunal must decide whether the disputed supports requested by QTBR are reasonable and necessary pursuant to subsection 33(2) of the NDIS Act for inclusion in the statement of participant supports in her NDIS plan.
BACKGROUND
QTBR lives with her parents and two siblings in regional New South Wales. QTBR has been diagnosed with cerebral palsy, congenital cytomegalovirus, epilepsy, neural migrational defects, microcephaly, developmental delay, congenital profound sensorineural deafness, she is also non-verbal and has food intolerances.[1]
[1] Exhibit R1, T1, page 2; T7, page 27.
Since September 2016, QTBR has been a participant in the NDIS.
Relevant to this proceeding, the NDIA approved a statement of participant supports for QTBR under subsection 33(2) of the NDIS Act on 19 June 2018.[2] A review of this decision was requested on behalf of QTBR.[3]
[2] Exhibit R1, T24, pages 114-122.
[3] Exhibit R1, T1B, pages 7-18.
On 24 May 2019, the NDIA made a decision regarding the supports provided to QTBR.[4] This is the reviewable decision before the Tribunal.
[4] Exhibit R1, T2, pages 19-21.
On 12 June 2019, QTBR applied to the Tribunal for review of the NDIA’s decision.[5] Because of the nature of the NDIA’s decision regarding QTBR’s supports, there was uncertainty about the Tribunal’s jurisdiction to review that decision. In late June 2019, the Tribunal, differently constituted, was satisfied that the NDIA’s May 2019 decision could be treated as one made under section 100 of the NDIS Act and was therefore reviewable by the Tribunal.
[5] Exhibit R1, T1, pages 1-5.
On 3 June 2020, pursuant to subsection 42D(1) of the Administrative Appeals Tribunal Act 1975 (AAT Act), the Tribunal remitted the reviewable decision to the NDIA for reconsideration following the parties’ agreement regarding certain disputed supports in this proceeding. As a result, on 22 June 2020, the NDIA issued a new twelve month NDIS plan for QTBR. The total funded supports for QTBR under this NDIS plan was $644,258.11 for core supports, capacity building supports and capital supports.
On 22 April 2021, again following the consent of the parties, the Tribunal remitted the decision under review to the NDIA for reconsideration pursuant to subsection 42D(1) of the AAT Act. On 3 May 2021, being the first day of the Tribunal hearing in this proceeding, the NDIA varied the decision under review to replicate QTBR’s existing supports until November 2021 and included further agreed supports.[6] QTBR’s total funding for this six month period is $288,343.42.
[6] Exhibit R3.
From 3 to 6 May 2021, the Tribunal held a hearing in this proceeding. In circumstances where the NDIA accepted a number of requested supports as reasonable and necessary during the course of this proceeding, and indeed accepted one communication support before closing submissions at the hearing due to the late provision of relevant evidence by QTBR, it is helpful to set out the following supports that remained in dispute between the parties and which are the subject of this decision:
(a)Funding in the sum of $40,000 for an assistance dog from the Centre for Service and Therapy Dogs Australia (CSTDA) to be delivered over a two year program, plus yearly maintenance funding in the sum of $2,664 (First Disputed Support);
(b)A Thermomix valued at $2,269 (Second Disputed Support);
(c)Feeding Support, comprising:
(i) an intensive feeding clinic of 10.9 hours; and
(ii) regular sessions totalling 35.8 hours (Third Disputed Support);
(e) Communication Support, being programming and training of assistive technology for 32 hours (Fourth Disputed Support);
(f) Neurological and Physical Abilitation Centre (NAPA) intensive therapy for 120 hours (Fifth Disputed Support);
(h) Low risk and low cost assistive technology totalling $2,690.45 (Sixth Disputed Support); and
(i) An additional 30 hours of Capacity Building Support for report writing (Seventh Disputed Support).
LEGISLATION & POLICY
The NDIS Act
The objects of the NDIS Act, set out in section 3, include to:
(a) in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008] ATS 12); and
(b) provide for the National Disability Insurance Scheme in Australia; and
(c) support the independence and social and economic participation of people with disability; and
(d) provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch; and
(e) enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports; and
(f) facilitate the development of a nationally consistent approach to the access to, and the planning and funding of, supports for people with disability;
(g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community; and
(ga) protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services provided under the National Disability Insurance Scheme; and
(h) raise community awareness of the issues that affect the social and economic participation of people with disability, and facilitate greater community inclusion of people with disability…
Subsection3(3) of the NDIS Act relevantly provides that, in giving effect to the objects of the NDIS Act, regard is to be had to the need to ensure the financial sustainability of the NDIS and to the provision of services by other agencies, Departments or organisations and the need for interaction between provision of mainstream services and the provision of supports under the NDIS.
Section 4 of the NDIS Act sets out the general principles guiding actions under the legislation, including:
1)People with disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development;
2)People with disability should be supported to participate in and contribute to social and economic life to the extent of their ability;
3)People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
…
5)People with disability should be supported to receive reasonable and necessary supports, including early intervention supports;
…
11)Reasonable and necessary supports for people with disability should:
(a)support people with disability to pursue their goals and maximise their independence; and
(b)support people with disability to live independently and to be included in the community as fully participating citizens; and
(c)develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment.
…
15)Innovation, quality, continuous improvement, contemporary best practice and effectiveness in the provision of supports to people with disability are to be promoted.
Subsection 4(17) of the NDIS Act also provides that:
It is the intention of the Parliament that the Ministerial Council, the Minister, the Board, the CEO, the Commissioner and any other person or body is to perform functions and exercise powers under this Act in accordance with these principles, having regard to:
…
(b) the need to ensure the financial sustainability of the National Disability Insurance Scheme.
Subsection 33(2)(b) of the NDIS Act relevantly requires a participant’s plan to include a statement, prepared with the participant and approved by the CEO of the NDIA, that specifies, among other things, ‘the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme’. Subsection 33(5) of the NDIS Act stipulates that in deciding whether or not to approve a statement of participant supports under subsection (2), the CEO of the NDIA, or in this proceeding the Tribunal, must:
(a) have regard to the participant’s statement of goals and aspirations; and
(b) have regard to relevant assessments conducted in relation to the participant; and
(c) be satisfied as mentioned in section 34 in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided; and
(d) apply the National Disability Insurance Scheme rules (if any) made for the purposes of section 35; and
(e) have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f) have regard to the operation and effectiveness of any previous plans of the participant.
The criteria in subsection 34(1) of the NDIS Act sets out what supports will be provided to an NDIS participant, as follows:
(1) For the purposes of specifying, in a statement of participant supports, the general
supports that will be provided, and the reasonable and necessary supports that will
be funded, the CEO must be satisfied of all of the following in relation to the
funding or provision of each such support:(a) the support will assist the participant to pursue the goals, objectives and
aspirations included in the participant’s statement of goals and aspirations;(b) the support will assist the participant to undertake activities, so as to facilitate
the participant’s social and economic participation;(c) the support represents value for money in that the costs of the support are
reasonable, relative to both the benefits achieved and the cost of alternative
support;(d) the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e) the funding or provision of the support takes account of what it is reasonable
to expect families, carers, informal networks and the community to provide;(f) the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i) as part of a universal service obligation; or
(ii) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
In McGarrigle v National Disability Insurance Agency [2017] FCA 308, Mortimer J observed that:[7]
Whether a support is “reasonable” requires a different assessment to whether a support is “necessary”. Again, it is not necessary in the context of this proceeding to be definitive about the nature and extent of the meaning of the phrase, or its components. It is enough to observe that using the concept of necessity would appear to tie one aspect of the CEO’s assessment to an evaluation of the kinds of factors set out in s 34(1)(a) and (b) and (d). The word “reasonable” would appear to be directed at factors such as those set out in s 34(1)(c) and (f). That is not to say the meaning of each word is exhausted by the factors set out in s 34(1): rather, it is to illustrate the different work that each concept does as an adjective in the phrase “reasonable and necessary supports”.
Relevantly to this proceeding, the factor set out in s 34(1)(e) (“funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide”) goes to both whether a support is “reasonable” (in the sense of it being subject to provision or funding by the Agency) as well as whether it is “necessary” (in the sense of whether it is a support that cannot be provided by others).
In my opinion, the text and context of s 33(5)(c), read with s 34(1) indicates that the CEO (or the delegate or Tribunal) must either be satisfied that a support has the character of being a reasonable and necessary support, or that it does not. Once a support is identified and described (to take an example away from this case, speech therapy lessons three times a week), then the question for the CEO (or the delegate or Tribunal) is whether she or he is satisfied that support, as identified, is reasonable and necessary for that particular participant. It may be open to the CEO to be satisfied that a differently identified support is reasonable and necessary: in this example, speech therapy lessons once a week. That determination can only be made on the basis of probative evidence.
[7] At [91]-[93].
The Rules
Subsection 34(2) of the NDIS Act authorises NDIS rules to prescribe ‘methods or criteria to be applied, or matters to which the CEO is to have regard, in deciding whether or not he or she is satisfied as mentioned in any of paragraphs (1)(a) to (f)’ in section 34. In this regard, pursuant to subsection 209(1) of the NDIS Act, the Minister may by legislative instrument make rules regarding the NDIS. The rules relevant to this application are the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Rules), which relate to the assessment and determination of the reasonable and necessary supports that will be funded for participants under the NDIS and which the Tribunal is bound to apply pursuant to subsection 33(5)(d) of the NDIS Act.
Part 3 of the Rules provides guidance for assessing a participant’s proposed supports under the criterion set out in subsection 34(1) of the NDIS Act.
Clause 3.1 of the Rules relates to the ‘value for money’ criterion in subsection 34(1)(c) of the NDIS Act and provides that:
In deciding whether the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support, the CEO is to consider the following matters:
(a) whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b) whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long-term benefit to, the participant;
(c) whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d) for supports that involve the provision of equipment or modifications:
(i) the comparative cost of purchasing or leasing the equipment or modifications; and
(ii) whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e) whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f) whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
Clauses 3.2 and 3.3 of the Rules relate to the ‘effective and beneficial’ criterion in subsection 34(1)(d) of the NDIS Act, as follows:
In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:
(a) published and refereed literature and any consensus of expert opinion;
(b) the lived experience of the participant or their carers; or
(c) anything the Agency has learnt through delivery of the NDIS.
In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.
Clause 3.4 of the Rules relates to the ‘reasonable family, carer or other support’ criterion in subsection 34(1)(e) of the NDIS Act and relevantly provides that:
In deciding whether funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide, the CEO is to consider the following matters:
(a) for a participant who is a child:
(i) that it is normal for parents to provide substantial care and support for children; and
(ii) whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii) the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv) whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
…
(c)for all participants – the desirability of supporting and developing the potential contributions of informal supports and networks within their communities. [emphasis in original]
Clauses 5.1 and 5.2 of the Rules set out general criteria for supports, as follows:
A support will not be provided or funded under the NDIS if:
(a) it is likely to cause harm to the participant or pose a risk to others; or
(b) it is not related to the participant’s disability; or
(c) it duplicates other supports delivered under alternative funding through the NDIS; or
(d) it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.
The day-to-day living costs referred to in paragraph 5.1(d) do not include the following (which may be funded under the NDIS if they relate to reasonable and necessary supports):
(a) additional living costs that are incurred by a participant solely and directly as a result of their disability support needs;
(b) costs that are ancillary to another support that is funded or provided under the participant’s plan, and which the participant would not otherwise incur.
Operational Guidelines
The NDIA has made numerous operational guidelines in relation to the application of the NDIS Act and the Rules. Relevant to this proceeding are the Operational Guideline – Planning – Deciding to include supports in a participant’s plan[8] and the Including Specific Types of Supports in Plans Operational Guideline - Assistance Animals (Assistance Animal Guideline).[9] The Assistance Animal Guideline contains guidance on the question of whether assistance animals are a reasonable and necessary support within the meaning of subsection 34(1) of the NDIS Act and Part 5 of the Rules.
[8] Exhibit R1, T29, pages 170-212.
[9] Exhibit R2, R13, pages 472-477.
These Operational Guidelines represent government policy and, to the extent they are consistent with the relevant legislation, should be applied by the Tribunal unless there is a good reason not to do so.[10]
EVIDENCE
QTBR’s Mother
[10] Drake and Minister for Immigration and Ethnic Affairs (No 2) (1979) 2 ALD 634. See also Madelaine and National Disability Insurance Agency [2019] AATA 4025 at [9].
Examination-in-chief
QTBR’s mother (Mother) gave evidence to the Tribunal by MS Teams. Although qualified and occasionally working in the natural health field, the Mother is now predominantly the full-time carer for QTBR.
QTBR’s mother and father (Father), a self-employed tradesman, also have two other children. The couple tragically lost another child after birth. QTBR’s Father was said to suffer Post-traumatic Stress Disorder (PTSD) due to this death and from witnessing QTBR suffering her seizures.
QTBR was born at 28 weeks gestation, but it was not until an MRI was performed at six months of age that she was diagnosed with severe disabilities. The couple first noticed QTBR’s experiencing her ‘first big’ epileptic seizure when she was four years old. Her Mother said the seizures can happen at ‘any time’ during either the day or night and these can become ‘clusters’ of seizures. These occurred between one and two times each week. On a ‘bad day’, QTBR can have thirty seizures. Her Mother said that she and her husband have been told that QTBR is at high risk of ‘SUDEP’, being sudden unexpected death due to epilepsy. This means ‘the best thing’ they can do is get to QTBR as ‘soon as possible’, even shaking her to ‘get her out the seizure’, because the longer a seizure continues the higher the risk of death.
QTBR’s Mother told the Tribunal that her daughter’s seizures are becoming ‘a lot worse’. When QTBR was four, she had a seizure once a month; they are now daily. QTBR is given the medication, ‘Midazolam’, for her seizures, but she is becoming ‘more resistant’ to this medication. She often requires intravenous assistance.
QTBR was said to have experienced a ‘big’ brain injury in February last year, following which she lost the ability to swallow and had to be fed by a feeding tube. She has slowly regained her oral feeding and drinking ability. The Tribunal was told by her Mother that QTBR having a longer fit can lead to brain damage due to a lack of oxygen; she turns blue and goes into hypoxia. QTBR requires oxygen ‘most times’ when she is having a cluster of seizures, at around four to five times each day for ‘big ones’.
Her Mother was asked to explain the difference between a tonic seizure and a clonic seizure. The Tribunal was told that most tonic seizures resulted in a stiffening of the body that was gradual and hard to detect, especially in someone with low muscle tone. Whereas a clonic seizure involves repetitive movement of the body. Her Mother said 90% of QTBR’s seizures are now tonic seizures, where she does not move. She said it is ‘hard to tell’ when QTBR is ‘fitting’; she has to keep an eye on her face and QTBR can be ‘blue’ or ‘frothing at the mouth’. When the other person looks directly at QTBR’s face they may notice a twitch of her lip or that her eyes are turning up to one side.
The SAMi (sleep activity monitor) mat and Embrace2 watch (to identify convulsive seizures and notify caregivers), both funded by the NDIA, require Wi-Fi and mobile telephone reception, respectively. The area of regional NSW where the family live does not have reliable mobile reception. Additionally, these devices are used to detect bodily movement to alert a person to a seizure, therefore they do not pick up the ‘majority’ of QTBR’s fits. The Mother told the Tribunal that the SAMi mat does not pick up movements and is only used at night when QTBR is in bed and the watch ‘doesn’t work for us at all’.
QTBR’s Mother said that they rely on 24 hour care and that it was ‘all we’ve got’ at the moment. This 24 hour care is funded by the NDIA, but there are ‘issues’ with securing care workers especially overnight and given the family’s location. These workers also find it difficult to detect QTBR’s seizures without shining a torch in her face, which would disturb her sleep. It was said that the family or carers can miss 90% of all seizures and gave a recent example of a carer sitting next to QTBR in the car. It was assumed that QTBR was looking out the window when she was in fact having a seizure. Her Mother identified this seizure from the front passenger seat when she saw that QTBR was ‘blue’. In this regard, her Mother said they were ‘not always’ aware of the length of time QTBR had been experiencing a seizure. When a tonic seizure is occurring its length is timed and QTBR is given oxygen because she can turn ‘blue’. After 5 minutes, the Midazolam medication is administered and she is placed on her side to avoid choking on saliva. After another 5 minutes, further medication is administered and an ambulance is called. The Tribunal was told that the quicker the family or another carer can identify and address a seizure, the quicker the medication works. Ambulances are called approximately every two weeks and take QTBR to hospital.
After a seizure, QTBR is affected ‘a lot’ and she can be vomiting for 24 to 48 hours. A seizure can also turn into a ‘cluster’ of seizures, resulting in QTBR being unwell for a week. She is on an adult dosage of the medication to stop her vomiting, but was said to be resistant. Her Mother told the Tribunal that QTBR cannot walk for ‘a few days’ after a seizure, she often cannot sit up and has to ‘lie down for a few days’ and her alertness is affected.
Her Mother said that it can ‘take weeks’ to find and train a care worker and she has not found any with nursing experience. Once they are trained, which is ‘difficult’, the situation can be ‘too much’ for some carers, therefore requiring new workers to be trained. Her Mother said it was ‘hard to watch’ QTBR when she is experiencing a seizure. Her son, who is autistic, was also said to have PTSD due to witnessing QTBR’s seizures and will ‘run and hide’ because he cannot cope.
Additionally, QTBR’s Mother had breast cancer four years ago and was told to reduce her stress levels and get adequate rest. She had no support at that time, so discharged herself from hospital the day after surgery to care for QTBR. Her Mother now has the immunological condition ‘Mast Cell Activation Syndrome’, which is not aided by the pressures over the last eight years of QTBR’s life and the issues with securing her support. QTBR’s Mother gets anaphylactic reactions and chronic hives due to stress and sleep issues.
QTBR’s Father works long hours to fund QTBR’s required medication, which now includes ‘CBD’ (cannabidiol) oil. During the ski season, her Father works a second job and can be away over winter for 7 days a week. At other times, and depending on work, her Father can be away between 6am and 8pm. Her Father is also affected by QTBR’s condition including, but not limited to, sleep issues. As mentioned, her Father has PTSD due to the earlier loss of another child and witnessing QTBR’s seizures; he ‘can’t assist’.
QTBR was said to ‘love animals’; the family care for orphaned joey kangaroos and they have an aviary. They also have a family dog, aged 7, who goes to work with QTBR’s Father. QTBR was said to have never hurt an animal.
In relation to reports regarding QTBR’s behaviour, such as having tantrums and being upset, her Mother said that this was reported in a two year old letter from a carer and QTBR was on different medication at the time; she is ‘never violent’, and only tantrums due to her communication issues. QTBR is ‘not strong’ and ‘never hurts anyone’; she can stomp her feet, cross her arms in frustration and push things, such as a book off the couch. She has not attacked anyone by running at them; she is limited in her mobility.
QTBR’s overnight seizures require her Mother to have QTBR sleep ‘pretty much on top’ of her. QTBR’s parents take it in turn to watch her and often miss the start of the seizures. The Mother can wake up wet from QTBR drooling during a seizure. QTBR can also be struggling to breath during a seizure, which is a ‘terrible sound’. This has a ‘massive’ effect on QTBR’s parents’ sleep.
Her Mother told the Tribunal that having a trained seizure dog would ‘significantly help’, because it would let her or another carer know when QTBR was having a seizure. It would help reduce her Mother’s stress levels and enable her to get more sleep; she would not be relied upon the whole time as she is presently. It would also help identify when QTBR is having a seizure when they are driving in the car. In this regard, her Mother told the Tribunal that this has happened at least 5 to 10 times, requiring the Mother to pull the car over to the side of the road, remove QTBR from the car seat, lay her flat and administer medication. As a result, it is hard for QTBR’s Mother to drive safely especially on roads with a 100 kilometre speed limit.
When asked about a Thermomix, the Mother said QTBR is on a Ketogenic diet, is allergic to dairy and soy and all food must be homemade. It goes through a feeding tube once blended. If it is not fine enough, the tubes become blocked and need replacing. At the moment, her Mother uses a ‘Ninja Bullet’ to blend food. This can occur daily and she attempts to clear it by pushing water or pushing ‘other things’ in the tubing. Her Mother is required to go to hospital approximately monthly because QTBR is aspirated. She has borrowed a friend’s Thermomix to puree food. Sometimes the Mother cannot make the food thin enough in the Ninja Bullet to go through the tube so QTBR is fed chicken stock, which is not nutritious and she is not getting the foods she needs according to her dietitian’s recommendations. Additionally, QTBR would like to assist in the kitchen, and the Mother considers QTBR could put food in the Thermomix and blend it.
In relation to feeding therapy, repetition through intensive therapy was said to ‘work really well' and QTBR needs to learn ‘how to eat safely’ because she can choke on food. Following her significant seizure in February last year, QTBR’s ability to feed has diminished and she is again being taught how to do this, including drinking water. The need for this support has arisen as a result of QTBR’s recent inability to swallow.
The Tribunal was told that communication support is required because QTBR is non-verbal and now communicates using ‘basic signs’, but cannot use both hands due to her cerebral palsy. QTBR also has cochlear implants to assist her hearing, although she cannot always hear what a person is saying. Her Mother signs to QTBR but she can become ‘very frustrated’ not being able to communicate what she wants or needs. QTBR can stomp her feet, yell and cry sometimes, but is not violent at all. This is her way of communicating; she knows no other way, which is why communication support is important.
In relation to NAPA Therapy, which is an intensive therapy program, her Mother said QTBR responds ‘really well’ to this repetition and it assists in learning and embedding skills. It also helps the family to dedicate an intensive period of time to her therapy, rather than driving a number of hours each week to attend one particular session.
In relation to the low risk assistive technology, her Mother said a cooling vest for QTBR would assist in keeping her temperature down and reducing seizures at night and outside of the home. There is air conditioning in the home following funding from the NDIA. Her Mother said a waterproof blanket would assist because QTBR gets cold in her wheelchair, because it can snow in town and she would be comfortable. The family do buy QTBR ski clothing, but she gets cold because she does not move like her other children.
Cross-examination
By way of cross-examination, QTBR’s Mother confirmed she is QTBR’s primary carer. Another child is home schooled due to medical reasons and also an NDIS participant with autism, anxiety and PTSD. QTBR is also home schooled because she is ‘too unwell’ to attend. A further child does attend school. Her Mother sees the occasional client for work, but maintaining consistency is difficult due to QTBR’s needs and those of other family members. Her Mother said her husband is ‘sometimes’ home to care for QTBR while she works, otherwise non-family carers are required to be with QTBR; her Mother cannot watch QTBR 24 hours a day.
QTBR’s Father runs his business from home. He does the paperwork in their shed or at local cafes due to the poor home internet reception, but has a mobile phone for work. There is no landline telephone connection in the house. The family have a Wi-Fi internet connection but the signal is variable. There was said to be no telephone reception in certain areas of the house. The Mother said she often has to go outside to call an ambulance, but she then cannot monitor QTBR’s breathing, including because QTBR cannot be lifted outside during a seizure.
The Mother confirmed that the family had done a trial with assistance dogs, but was unsure whether they were trained seizure dogs and deferred to the Animal Physiotherapist, Dr Nicholson. The potential provider of the seizure alert dog would be CSTDA and an initial assessment was conducted by telephone due to the COVID-19 pandemic.
Counsel for the NDIA asked her Mother whether the nature of QTBR’s seizures had changed. She replied that they had been ‘consistent’ for the past 12 to 24 months, but prior to this they were ‘a bit different’. QTBR began experiencing more clonic seizures when she turned four. They received funding for the SAMi mat and the Embrace2 watch, but did not know that mobile reception was required. These devices do not pick up tonic seizures, because it only detects a ‘jerking’ movement that did not occur with these types of seizures.
Her Mother told the Tribunal that the medication, Midazalone, is administered five minutes after a seizure but this does ‘not always’ stop a seizure. Her Mother confirmed that the medication does not prevent a seizure; it is a ‘rescue’ medication to bring QTBR out of a seizure. This medication was not always administered after a seizure, but can be up to four times a day. While there is no medication to stop seizures, the Mother said the CBD oil does ‘lessen’ them and has made a ‘huge’ difference, although QTBR still has ‘a lot’ of seizures. When QTBR has a violent seizure, she is unconscious and is laid on her side to stop her from choking on saliva.
Her Mother said that QTBR’s seizures were getting worse and more frequent. Last year, Dr Scheffer, QTBR’s Neurologist, changed the administration of the medication from ten minutes after the start of a seizure to five minutes. Other medication had been unsuccessfully trialled. Dr Scheffer also manages QTBR’s diet and recommended the Keto diet she is now on. QTBR’s seizures were said to be ‘much worse’ when she was not on the Keto diet. For example, fruit or carbohydrates lead to worse seizures and ‘clusters’. This had been unchanged over the last 12 months, but it is worse than four years ago. Later in her evidence, her Mother said the severity of QTBR’s seizures were the same during both the day and the night.
QTBR’s Mother does not get a lot of sleep. She sleeps for the first part of the night while her husband stays awake, and then she watches QTBR and has her sleeping on top of her to wait for seizures. QTBR’s Father will wake the Mother if QTBR is suffering a seizure. QTBR no longer moves about the home at night. Her sleep is broken due to her neurological issues. Her Mother agreed that QTBR’s constant waking was different to epilepsy. When she does wake at night, QTBR is usually patted back to sleep, which can take hours. After a seizure, QTBR is ‘hyped up’, suffers insomnia and needs supervision.
In this regard, her Mother told the Tribunal that it was ‘difficult’ to find overnight care and she cannot spend the funding allocated by the NDIA for 24 hour care. The Mother has placed advertisements for carers on online job sites and forums and in newspapers, however, she has not been able to find ‘anyone’. Treating practitioners have not been able to assist in locating a carer and local general practitioners have not been able to ‘offer anything’ in terms of advice.
Her Mother was again asked about QTBR’s behaviour. She said her tantrums were a side effect from previous medication. QTBR was said not to kick, hit or scream, especially on her current medication. She will push her Mother if she does not want to be lifted and will yell for attention because she cannot talk. Her Mother was unsure of the dates for QTBR’s previous medication, but said she stopped these predominantly because of her ‘bad tantrums and temper’. QTBR still has her ‘frustrations’, especially around communicating, but she is ‘not violent in any way’. Her Mother refers to QTBR’s behaviour as ‘frustration’, not challenging behaviour. It was put by Counsel for the NDIA that a number of practitioners had raised QTBR’s behaviours of concern. The Mother said she did not believe this to be the case.
In relation to food, QTBR’s Mother prepares her meals. QTBR is at risk of aspiration due to feeding tubes becoming blocked. QTBR is not at risk of aspiration with her PEG (percutaneous endoscopic gastrostomy) tube, but she is with her NG (nasogastric) feeding tube. She now has a PEG tube, which will likely be permanent. They attend hospital to unblock the tubes and insert a new ‘button’ into QTBR’s stomach. She is also at risk of aspiration when fed orally. At the moment, QTBR is being fed both by the PEG and orally for her muscles. QTBR does not need everything pureed but it depends on the seizures as to what she can be fed. If they are close together, all QTBR’s food is pureed. QTBR has four tube feeds daily and is offered oral consumption. Tube feeding takes fifteen to twenty minutes, in addition to administering medication and cleaning the feeding tubes. Preparation time can vary. A slow cooked meal, to get food fine enough, takes approximately six hours and needs to be pureed and batched-up for future consumption. This process can take one day each week. Cleaning up takes ten minutes, including washing and drying tubes so they are safe to re-use. In total, the feeding process takes around four hours each day excluding preparation time. Her Mother confirmed that QTBR is on ‘supplements’ and she has a plan for blended foods on the Keto diet, which have been approved by QTBR’s dietitians.
Counsel asked whether the Mother had tried a ‘Vitamix’ blender. She has not used one and said the family did not have the money to buy one to trial it. Her Mother was unsure why this option was not contained in the list provided by the occupational therapist, Ms Newman. Counsel further asked whether they had explored any alternatives to a Thermomix. Her Mother said she had spoken to QTBR’s doctors and occupational therapist and they agreed a Thermomix is required. Her Mother said she was unsure of the safety risks associated with a Thermomix and the specialists had not discussed these with her. She also had not looked at reporting regarding the burn risks associated with a Thermomix.
In relation to mobility, QTBR’s Mother confirmed she has balance problems with decreased function and perception and depth issues. In short she requires constant supervision. QTBR needs adult assistance with all personal and self-care needs. This was unlikely to change.
Her Mother agreed that QTBR has NDIS funding for physiotherapy, speech therapy, occupational therapy, hydrotherapy, an intensive therapy and gait and orthotic therapy. The funding can be used either weekly or on an intensive basis. QTBR was said to respond better with both weekly and intensive sessions. The family are currently able to do intensive therapy and monthly face-to-face therapies. Her Mother said the intensive therapy was a ‘good model’ for QTBR and her progress, but she also needs regular face-to-face local therapy. QTBR has done three intensive therapy blocks before COVID-19. Her Mother told the Tribunal that QTBR’s existing therapy funding was used to recently attend a three-week intensive therapy block with the NAPA, which meant she had to ‘give up a bit’ of her regular occupational therapy and physiotherapy. In-home therapy can be incorporated to QTBR’s daily life, rather than waiting for an intensive block of therapy, but the family does not have all the necessary equipment although they do try to do some of this at home.
In relation to an assistance dog, the Mother said she had seen other families who have seizure alert dogs. Her Mother discussed with the CSTDA the types of seizures detectable by their dogs, although she did not know how many epilepsy seizure dogs they had trained. She had seen three families’ dogs respond to seizures through her research. Her Mother said having a carer present overnight would not necessarily help her get more sleep, although overnight assistance was required. Her Mother said some nights QTBR would have no seizures, but she is unable to know this without being present at all times with QTBR lying on top of her. There is nothing presently that would alert her Mother to QTBR’s overnight seizures if she was in a separate room of the house. Having an overnight carer would be ‘very beneficial’, but this was not always possible given other circumstances can arise whereby they cannot attend and the difficulty in securing such assistance in the area. Her Mother said if an assistance animal was provided it would not be alone with QTBR, it would assist the support worker and watch QTBR’s face while the worker attended to her other needs.
Re-examination
By way of re-examination, QTBR’s Mother said lack of oxygen was her biggest concern when she discovers QTBR having a seizure and does not know how long it has been occurring because the longer they continue the higher risk of brain damage and regressing in her functions. In this regard, fewer prolonged seizures were said to be better for QTBR’s general prognosis and early administration of medication can limit the cluster of seizures. The limitations of a human to identify a tonic seizure has led her Mother to consider a seizure-alert dog for QTBR, noting that she can wake up with QTBR on top of her in an advanced seizure state.
Professor Ingrid Scheffer – Paediatric Neurologist and Epileptologist
On 3 May 2019, Professor Scheffer provided a report following QTBR’s admission and assessment under the Children’s Epilepsy Program at the Austin Hospital in Melbourne. Professor Scheffer relevantly stated in relation to QTBR’s epilepsy and seizures that:[11]
From the age of 3 years, [QTBR] had seizures every 2 weeks and seizures have increased in the last 6 months. The vast majority of seizures occur in sleep but she does have some awake or in the bath. She has the following seizures types:
a. Focal motor seizures: These begin with facial twitching and [the Mother] was unsure if these were more on one side. She is alerted by hearing her lips smacking or by hearing the covers making a rhythmic movement, or she sees [QTBR] on the monitor. She stiffens all over and will twitch bilaterally but this is asymmetric. This occurred daily over Christmas for about 2 weeks after missing some doses of CBD. These seizures last 10 minutes and there is postictal dry retching and she is drowsy; they have never continued for 30 minutes and they have never used diazepam. She does have some briefer seizures lasting 2 minutes and last had one seen over Easter when they missed a CBD dose.
b. Tonic seizures evolving to tonic-clonic seizures: These last 2-3 minutes and the tonic component can be quite prolonged.
c. Staring episodes: These were evident from age 6 months and last 5 seconds. There is no eyelid fluttering, oral automatisms or dystonia. They see 3 per day and are more likely in the afternoon when [QTBR] is tired.
…
At present her tonic-clonic seizures are fully controlled with CBD which is prescribed by her parents…It is wonderful that her major seizures are fully controlled….Certainly her 10 minute seizures have the potential to be life-threatening and were frequent occurring every fortnight. We talked about the mortality associated with the severe epilepsies and [the Mother] is aware of the risk of Sudden Unexpected Death in Epilepsy (SUDEP).
[11] Exhibit A1; Exhibit R2, R8, pages 452-455.
On 14 April 2020, Professor Scheffer relevantly reported that:[12]
Seizures are largely tonic to tonic-clonic seizures which last 10 minutes. I suggested we bring back the time of administering midazolam from 10 minutes to 5 minutes. She also has some focal facial clonic seizures. She has 5 staring episodes seen per day by her mother but she will respond if her name is called, so I do not think we can be sure they are seizures.
In addition, [QTBR] has frequent episodes of nonconvulsive status epilepticus each month, triggered by fatigue. She is confused all day and will vomit. She will stare blankly on and off for a minute and then vomit and sleeps all day. Sometimes this will evolve to a tonic-clonic seizure.
[12] Exhibit A2; Exhibit R2, R8, pages 449-451.
On 12 August 2020, Professor Scheffer responded to questions from the NDIA for the purpose of this proceeding, relevantly as follows:[13]
The patient has a highly complex, severe seizure disorder with multiple seizure types…
The patient’s seizures do involve physical movement which is normal for specific seizure types. She has convulsive seizures.
The patient also has seizures that do not involve physical movement.
The frequency of the patient’s seizures fluctuates which is the usual pattern in epilepsy. She has tonic to tonic-clonic seizures and these seizures last 10 minutes. She also has focal facial clonic seizures. In addition she has 5 staring episodes a day but it is unclear if these are definitely seizures. She has frequent episodes of nonculvulsive status epilepticus where she will seize throughout the day.
…
It is very difficult to train a person to recognise pre-seizure markers. Often parents are better at this because they are acutely aware of subtle differences in their child’s presentation. I do not think it is possible to definitely train an outside carer unless there are very specific markers.
I understood this was about obtaining funding for a seizure-alert dog. There is no scientific evidence to my knowledge that seizure-alert dogs are reliable.
[13] Exhibit R2, R8, pages 447-448.
Professor Scheffer was unavailable to give evidence at the hearing of this proceeding.
Dr Helen Nicholson – Animal Physiotherapist
Dr Nicholson and Ms Stephanie Anne D. Duque, Occupational Therapist, both from Whole Family Health in NSW, provided an ‘Assistance Animal Allied Health Assessment’ dated 23 August 2019, which relevantly stated that:[14]
[14] Exhibit R2, A38, pages 177-186.
[QTBR]’s parents expect the assistance dog to sleep on [QTBR]’s bed, to assist [QTBR] to be more independent, and to give her company.
…
The dog will lie next to [QTBR] to prevent her falling out of bed and will bark to wake [QTBR]’s parents if she has a seizure
…
The provision of an assistance dog meets the reasonable and necessary supports criteria in s34(1) of the NDIS Act 2013 by:
…
d) The support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice
✓ Current research and practice guidelines for assistance dogs are still evolving
o Refer to videos in powerpoint file for evidence of effect and benefit during [QTBR]’s trial
o Our clinical experience during animal-assisted therapy is that participants make faster progress because they are motivated to engage with the animals
On 30 August 2019, Dr Nicholson completed an NDIS General Assistive Technology Assessment Template and summarised the evidence regarding assistance animals as follows:[15]
Although research in the field is still developing, there are many published reports in peer-reviewed journals of the benefits assistance dogs can bring to the lives of people with disability and their carers, society and the economy. Further, trained dogs have been used for decades by other Australian government agencies, including law enforcement (e.g. police search and rescue dogs, police and prison drug detector dogs, police cadaver dogs) and the armed forces (explosive detector dogs). This fact, as well as the evidence showing that dogs’ ability to detect scents is up to 99% as accurate as that of expensive machinery, and the evidence in section 2.2 (above) [Participant Goals], the assessment report and video files (attached) leave no credible argument against the provision of assistance dogs to carefully assessed NDIS participants like [QTBR].
[15] Exhibit R2, A42, pages 191-205.
On 8 March 2020, Dr Nicholson provided a letter in support of QTBR’s application for an assistance animal the subject of this proceeding and relevantly wrote as follows:[16]
It is imperative that [QTBR] has an assistance dog approved for her as a matter of utter urgency. Further delay in approving one amounts to nothing short of unconscionable behaviour and represents a gross breach of the NDIA’s duty of care to [QTBR].
…
Seizure monitors all rely on clonic movements to make them effective in picking up that a seizure is underway. However, as demonstrated to her neurologist during 4 days of inpatient Video-EEG monitoring, [QTBR]’s seizures are not always initially clonic – her seizures often begin in the tonic phase, meaning her body does not make enough movements to trigger the seizure monitors and her life is therefore in danger without 24/7 human or trained-animal monitoring.
Despite the above, [QTBR] has trialled a number of seizure devices, but as mentioned in my 2019 report, all have failed. The Embrace2 Seizure Watch and the SAMI overnight monitor that [QTBR] has trialled are both ineffective in detecting [QTBR]’s particular form of seizures. [QTBR]’s prognosis is that the seizures will worsen with age, and as she is non-verbal, she is unable to communicate if she can feel one coming. This means that the need for an assistance dog will only become greater with time–monitors cannot be relied on to prevent [QTBR]’s Sudden Unexpected Death Due to Epilepsy.
…
As mentioned in my 2019 report, the SAMI device is also limited by the lack of mobile signal at [QTBR]’s rural house; an assistance dog has no such limitations. Further, the Embrace2 seizure watch requires [QTBR] to carry a smartphone in order for it to Bluetooth to alert – she requires assistance with all gross and fine motor tasks and is therefore incapable of carrying a smartphone (even if it did have coverage, which it doesn’t at her house, and even if the Bluetooth was strong enough to pick up from the next bedroom, which it’s not); an assistance dog does not need to be carried, can easily notify occupants of the next bedroom and serves multiple other functions as well.
I draw your attention to a 2016 article in Seizure 40:88-101 Automated seizure detection systems and their effectiveness for each type of seizure (Ulate-Campos, et al, DOI which reviews the literature on seizure-alert dogs. It notes that the sensitivity of dogs trained to alert to seizures is around 80% and the specificity 100%, while the reduction in seizure frequency is a mean 43% - all things that [QTBR]’s medications and current devices have not been able to achieve. Further, the article reports that seizure-alert dogs are successful in detecting the types of seizures [QTBR] experiences and that concomitant video EEG has confirmed that the dogs detect seizures that electronic monitors cannot. [emphasis in original]
[16] Exhibit R2, A43, pages 206-207.
On 28 August 2020, Dr Nicholson provided a further letter in support of QTBR’s application for an assistance animal, which relevantly stated that:[17]
[17] Exhibit R2, A45, pages 212-220.
o As described in the 2019 La Trobe report to the NDIA, Assistance Dog International standards are generally that dogs should respond to commands 90% of the time on the first request, however, no minimum for seizure alert is specified, presumably because alerting to a seizure is not done “on command”.
o Instead, seizure alert dogs are trained to recognize the scent on swabs taken from the person during a seizure and, through repetition of positive reinforcement for responding appropriately, are operantly conditioned to respond to the scent of an impending seizure. This is in keeping with the methods described in Prof McGreevy’s co-authored book Carrots and Sticks: the principles of animal training.
o In literature quoted in my August 2019 report, seizure alerting technology may be 88% reliable, with more false positives than true positives detected. In contrast, studies of dogs detecting medically significant scents (e.g. lung and breast cancer) were accurate in the range from 85 to 99% at very small concentrations.
o Further, the Applicant’s seizure alerting technology is completely unreliable, due to the nature of her seizures and the poor internet signal at her rural home.
o Therefore, on the balance of probabilities and the lived experience of the Applicant and her family, the provision of an assistance dog trained to alert to seizures would be at least as effective as reliable technology – even though the technology does not work reliably for her. A trained dog is therefore the only reliable option in the circumstances and will provide a valuable material benefit to the Applicant, who is at risk of dying from her seizures.
…
· I agree with Ms Monch’s opinions on p16-17 (section 4.2) that:
o The Applicant behaves calmly and happily around animals and enjoys interacting with them.
o The provision of an assistance dog could be described as a duplicate of 24-hour carer assistance at this time.
▪ However, due to the nature of placing a dog and the length of time this takes, it is not possible to avoid some overlap of the two supports.
▪ It is also more cost-effective during the 8-year career of an assistance dog, to fund the dog than 24-hour carer assistance.
o The assistance dog would help the Applicant achieve other goals, including improved mobility, socialisation, independence and confidence.
▪ This means that, as the dog helps the Applicant more, adult support (both from parents and paid carers) will be needed less.
▪ Even if, on the worst case scenario example of it taking 7 of the 8 years of the dog’s career to reduce the Applicant’s requirement for 24-hour care, the provision of the dog would still be cheaper than providing 24-hour care for all 8 years.
Examination-in-chief
Dr Nicholson appeared by telephone at the hearing of this proceeding. In her evidence, she stated that she began working professionally with animals in 1999, including working dogs such as customs, police and guide dogs.
Dr Nicholson described the assessment that occurred with QTBR, including a sensory-profile assessment of QTBR regarding her response to touch, movement, body position. She was trialled with a therapy dog. QTBR was said to be ‘really delightful’ and engaged readily with the dogs.
Dr Nicholson stated that she had not worked with seizure-alert dogs or provided them with physiotherapy, but she has spoken with different trainers regarding their technique. Dr Nicholson said her understanding of the literature regarding the efficacy of seizure-alert dogs was that the research was ‘still emerging’, it is a ‘comparatively new field’ and the studies conducted are small. A recently commenced randomised controlled trial in the Netherlands is assessing the effectiveness of seizure-alert dogs, but the results of this research were said to be ‘probably another four years’ from publication. Dr Nicholson said ‘nobody knows how the dog actually manage to detect the seizures’. There are theories that it is due to physiological changes that it can smell or detect that a human cannot. The research is ‘in some cases, still quite conflicting results with regard to how accurate various dogs are, but then there are ranges of results where they can get as high as 100% sensitivity and their positive predictive value is similarly high’. In relation to the La Trobe University Report, titled ‘Reviewing Assistance Animal Effectiveness’ and dated 30 September 2016 (La Trobe Report), Dr Nicholson said there was ‘more objective evidence coming out’ for the diabetes dogs compared to the seizure dogs. Additionally, it would be ‘incredibly difficult’ to obtain a sufficiently high number of participants for a trial to be accurate. As a result, ‘pre and post measures’ could be utilised. For instance, identifying how many seizures a person had before and after an intervention, such as the placement of a seizure-alert dog.
Dr Nicholson said through her work she has discussed with dog trainers that usually during an epileptic seizure a person sweats more profusely, therefore a ‘sweat swab’ is taken from a person and the dog is taught that this is the correct scent to respond to. This is done through positive reinforcement. At the moment, scent is the foundation under the current theory that a seizure is imminent. Dr Nicholson said the benefit of a seizure-alert dog would be that it would not only rely on visual stimuli, it could smell a change or other physiological difference unable to be detected by humans to alert of a seizure. This would allow the medication to be administered in a timely manner and reduce the amount of time QTBR would have low oxygen. The dog would wake up after smelling a seizure and perform an alert. It would have playtime and not be restricted to a particular place, but would work when required. Dr Nicholson’s experience with autism assistance dogs working with children was that they co-regulate each other so as to keep the child calm for much longer than a child with the same condition but without such a dog.
Dr Nicholson told the Tribunal that a dog would alert someone sleeping to treat QTBR. A dog may not be 100% effective and does not negate the need for a full-time carer, hence the likely overlap. Dr Nicholson said she considered a carer, the SAMi mat and the watch each ‘do some of the help’, but due to the nature of QTBR’s seizures, the remote location, and lack of availability of care staff, a dog would provide further coverage to detect her seizures.
Cross-examination
Under cross-examination, Dr Nicholson agreed that animal physiotherapy assisted with the movement of animals and their injuries and needs regarding functioning and mobility. Dr Nicholson said she understood why it could be seen from her report that she crossed from being an independent expert in this proceeding to being an advocate for QTBR. In this regard, Dr Nicholson also understood she had made an improper statement in her report regarding the NDIA’s refusal to fund an assistance animal.
The three hour assessment was the only time Dr Nicholson has seen QTBR; she did not have a seizure or exhibit any challenging behaviours during this time. She was unaware of other supports funded by the NDIS and those requested for QTBR. Dr Nicholson told the Tribunal she did not endorse the CSTDA but had noted it did not rely solely on scent for a trained dog to detect a seizure. She has not trained a seizure-alert dog.
Dr Nicholson acknowledged that an overnight carer for QTBR would be required to be active, including by administering medication and oxygen which, it was agreed, a dog could never do. She agreed that a dog could only alert to a seizure. Dr Nicholson also agreed that QTBR requires constant, active adult supervision. In this way, the purpose of the dog would be to act as an ‘adjunct’, rather than a replacement for adult care.
Dr Nicholson was taken to the La Trobe Report regarding assistance animals and agreed that there was no robust evidence attesting to the general effectiveness of assistance animals or their value for money for people with disability. Dr Nicholson told the Tribunal that appropriate training and selection of a dog would see it do ‘its job’. She said there is no credible reason not to use the dog and ‘a number of articles’ show that seizure alert dogs ‘can be effective’. Counsel put to her that she was advocating for QTBR, in saying there was ‘no credible argument’ against the NDIA providing a seizure-alert dog, and that there was no proper basis for such a statement. Dr Nicholson apologised.
Dr Nicholson was referred to an article mentioned in her report, and specifically its conclusion that was not extracted, which said that no rigorous data confirms whether seizure prediction by seizure-alert dogs is better than chance. She said this was true and that the ‘classic conclusion’ in every article is that ‘more research is required’ to determine there is ‘no doubt whatsoever’. Dr Nicholson said a published article reported that a seizure dog reduces stress in a person with epilepsy, therefore reducing their seizure frequency. She accepted that QTBR’s seizures are getting worse. Dr Nicholson said the objective of the dog is to be a supplement to the SAMi mat and to alert an adult if there is a seizure to administer medication and oxygen, rather than the extra burden on the family or a carer to be awake all night watching QTBR. She did not suggest an adult can be dispensed with, but that they can fall asleep and be woken by the dog if QTBR is having a seizure.
Re-examination
Dr Nicholson was taken by QTBR’s representative to the La Trobe Report and the relevant referenced articles. She identified a number of articles with the words ‘seizure dogs’ in their title.
Dr Leila Masson – Paediatrician
On 7 January 2020, Dr Leila Masson, Paediatrician, provided a report in support of QTBR’s request for various funded supports from the NDIA, which relevantly stated follows:[18]
[QTBR] is at a high risk of SUDEP (sudden unexpected death due to epilepsy) due to her uncontrolled seizures. Therefore it is important to reduce all seizure triggers which include fatigue, heat, stress, and consuming foods outside of the modified Atkins diet. QTBR is also at significant risk of regression and memory loss from her seizures so all steps need to be taken to avoid seizures.
[QTBR] has tried many different anti-convulsant medications since 4 months of age and all medications she has tried have been ineffective in preventing and controlling her seizures. Given the adverse reactions she is currently on CBD oil as recommended to continue by her Neurologist. Whilst this helps it still doesn’t provide full control and there are many triggers that cause [QTBR]’s seizures. She is also currently on a Modified Atkins Diet for her seizures.
[QTBR]’s tonic clonic seizures occur at least every 2 days and as frequently as 1-2 x daily. The seizures cause constant vomiting, disorientation, she is unable to walk for 12-24 hours after the seizure and she needs constant monitoring. The majority of [QTBR]’s seizures are overnight or can happen when she is awake or in the bath so she needs constant supervision because she is at high risk of Sudden Unexpected Death due to Epilepsy.
[QTBR]’s current seizure management plan is to administer 0.5ml of Midazolam after 10 minutes, if not resolved after 5 minutes give another 0.5ml of Midazolam and then call an Ambulance. [QTBR] also has sleep problems and constantly wakes during the night and needs resettling, this has been ongoing since birth.
Given [QTBR]’s polymicrogyria the neurologist has informed in her latest correspondence that [QTBR]’s seizures are likely to get worse with age as we have seen with the recent worsening of her seizures. These are severe life threatening seizures hence the need for constant supervision. Given that [QTBR] is non verbal she is unable to communicate if one is coming or give any indication therefore she needs constant monitoring.
…
Given [QTBR]’s worsening of seizures, all support workers that work with [QTBR] should be trained in the administration of Midazolam.
[18] Exhibit R2, A4, pages 13-15.
Examination-in-chief
Dr Masson gave evidence by telephone to the Tribunal and confirmed that she had been treating QTBR since May 2016, when QTBR was three years old. Dr Masson told the Tribunal of QTBR’s various diagnosed conditions and that her seizures had been sought to be addressed through medications prescribed by QTBR’s neurologist. These had not controlled her seizures or corresponding behaviour problems. However, QTBR was now on CBD oil, which she said does not reduce her seizures but does calm her down. Her seizures were described as ‘life threatening’.
Dr Masson last saw QTBR in mid-March this year and she was experiencing ‘clusters’ of seizures every three weeks. Despite her earlier evidence, this reduction was subsequently attributed to the CBD oil and QTBR’s diet. This was a change since her last report of January 2020 that was before the Tribunal.
The Tribunal was told by Dr Masson that QTBR could attend school if her seizures were controlled. To this end, a dog could alert people to a seizure and medication be administered. Currently, QTBR’s attendance at school was ‘too dangerous’ and the teachers were said to be ‘overwhelmed’ with the possibility of her having a life-threatening seizure at school.
Dr Masson said there every time a child has a seizure there is the potential for the brain to be affected. Additionally, hypoxic injury may worsen QTBR’s neurological issues. The longer the seizure, the worse it is for QTBR’s brain, cognitive skills, cerebral palsy and motor skills.
Dr Masson told the Tribunal it would be ‘very helpful’ for the family to have a carer. This need not be 24 hour care, but the Mother ‘needs help’; during the day ‘would be helpful’. A dog would provide 24 hour care and was said to be ‘better’ than a human carer because it could alert humans to QTBR’s seizures. It could be ‘life saving’ for QTBR. 24 hour human care was subsequently described as ‘not helpful’.
In relation to intensive therapy workshops attended by QTBR, Dr Masson said that she has ‘made progress’; at three she could ‘barely sit’, now she was walking and attempting to talk, but not at an age-appropriate level. In this regard, Dr Masson said it ‘looks like they boost’ QTBR’s development, but acknowledged it was ‘hard to say’. However, generally, the more intense the brain training, the better the outcomes.
Cross-examination
Under cross-examination, Dr Masson told the Tribunal that she sees QTBR approximately every four to six months. She acknowledged that her understanding of QTBR’s seizures was based on the Mother’s report and that the Neurologist, Dr Scheffer, was the ‘real expert’ in relation to those matters. Dr Masson confirmed that she is a general paediatrician.
Dr Masson’s assessment of QTBR’s development was based on her observations during the thirty to sixty minute consultations and she considered QTBR had ‘definitely made progress’ over the years. Dr Masson acknowledged that she could not definitively determine that the intensive therapies were the cause of this improved development, but such treatment is recommended for developmental delay. The more training in a particular area the better the outcome. She could not imagine that it would not be helpful to QTBR’s development. In her observation, QTBR is making progress and she assumes it is due to therapy, but does not know whether it is due to other therapies QTBR receives or in combination with the intensive therapies.
Dr Masson was asked about QTBR’s behavioural issues she noted in her reports. She described to the Tribunal QTBR’s irritability, low frustration tolerance, tantrums and oppositional behaviour. She had observed QTBR being irritated, but the last time she saw QTBR in March this year she was ‘happy’. She was said to be worse when on previous medication. To this end, Dr Masson said she was unsure whether there was any new medication that could prevent QTBR’s seizure, but CBD ‘seems to help’ more than other medication because she is having fewer seizures.
Dr Masson told the Tribunal that, based on her consultation with QTBR and her Mother in March this year, she understood that QTBR was having clusters of seizures every three weeks, which may last for a ‘few days’ and require hospitalisation and medication. Previously, QTBR’s seizures were constant. QTBR’s Mother had told Dr Masson that QTBR was having fewer seizures. Dr Masson was unsure whether QTBR’s night waking is a seizure. Dr Masson also said she understood that QTBR was being administered Midazolam ‘less often’; this is a ‘rescue’ medication when she experiences a seizure.
Counsel for the NDIA asked Dr Masson whether QTBR’s other impairments were lessening, together with the seizures. She replied that QTBR’s underlying illness is ‘not going away’; she would always have developmental delay and hearing loss, but she was gaining new skills, such as walking and playing with toys. Her communication is still ‘very different’ from that of an equivalent-aged child, but there is ‘encouraging’ progress.
QTBR’s feeding was said to be ‘very difficult’ and this mostly occurred through the stomach. Some water and food was occasionally given orally, but more for the taste experience, and there is a risk of choking.
Despite her earlier evidence that there was no benefit in QTBR having 24 hour human care, Dr Masson’s reports before the Tribunal indicated that she needs human assistance with all activities of daily living. Dr Masson agreed under cross-examination that this was the case and that QTBR required constant adult supervision; a dog could not replace this requirement and could not administer medication or oxygen, but it was said to be able to detect seizures and then alert a carer to attend to QTBR.
Dr Masson was asked about her evidence that medication should be administered as soon as possible after being altered to QTBR’s seizures, and not after a certain period of time, and she referred to Dr Scheffer holding this opinion but could not identify where this was stated in the neurology reports.
Dr Masson told the Tribunal that she had seen a seizure alert dog and said that they detect a seizure through scent. Dr Masson acknowledged that she did not have any relevant qualifications, training or experience to support this view, but said that she had seen seizure alert dogs at work and how they can assist. She knew about how the dog detects seizures from reading about relevant studies and her general understanding that dogs detect through smell. Dr Masson said that approximately seven years ago she had seen a dog working with an adult in New Zealand, who was a patient of a friend, and had the same type of epilepsy as QTBR. Dr Masson told the Tribunal that none of her patients had a seizure alert dog, including because she did not have many epileptic patients; this is not her area of speciality.
Dr Masson was unsure of the breakdown between the number of tonic seizures and the number of clonic seizures suffered by QTBR but said that she thought she mostly experienced tonic-clonic seizures. Dr Masson’s support for QTBR to be provided with an assistance animal was based ‘mostly’ on its seizure alerting ability; she ‘absolutely’ agreed with the proposition that, even with an assistance dog, QTBR would always need adult supervision.
Re-examination
In re-examination, Dr Masson confirmed that her understanding was that QTBR was now experiencing clusters of seizures every three months, which can last for a few days and require her hospitalisation. Dr Masson was asked about other seizures and she queried whether QTBR’s night waking was a seizure and noted that an overnight EEG would be required to be performed in hospital to determine whether these were seizures. Dr Masson said her opinion was that QTBR’s medication should be administered after a seizure-alert dog barks to get the attention of a family member or carer and before it was evident to a human. At the time of a dog smelling, Dr Masson said, a seizure would have started but this would not be apparent to human eyes.
Mr Kevin Picker – Chief Executive Officer of The Centre for Service and Therapy Dogs Australia (CSTDA)
In July 2019, the organisation of which Mr Picker is CEO, CSTDA, provided a proposal for an ‘Animal-Assisted Medi-Alert and Innovative Community Participation Empowerment (ACE) Program and Service Dog’, prepared by Dr Pree Benton, Psychologist, which stated that the overall aim of the program is to assist QTBR ‘develop life skills required to be empowered to gain access to her community as independently as possible’, in partnership with an ‘appropriate Service Dog to support and motivate [QTBR] to build her empowerment, and become able to lead her “ordinary life”’.[19] The proposal relevantly continues as follows:[20]
Specifically, the program will train [QTBR] and her support team to correctly and effectively manage and use her Service Dog to ensure the dog alerts [QTBR] prior to any trained event (i.e. seizure), allowing [QTBR] to be safe during seizures, maintain normal routines as much as possible during episodes of illness, enhance [QTBR]’s capacity to socialize and engage in life as normal at an age-appropriate level, and feel safe despite living with seizures.
[19] Exhibit R2, A36, pages 168-175.
[20] Exhibit R2, A36, pages 168-175.
In addition, following a request from the NDIA, Mr Picker provided a report dated 16 August 2020 for this proceeding, which relevantly stated as follows:[21]
[21] Exhibit R2, R6, pages 430-438.
Please note that in all cases answers are generalised since we have not yet, as specified in the proposal, conducted and in person assessment.
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Report based on a telephone assessment only. Final assessment only after in person assessment and 3 month trial.
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A conflict may exist since I would assume, although there is no certainty that if successful this company will receive a client.
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Is there an accepted model or training process for seizure alert dog in Australia? If so, please outline the methodology and the steps that are typically followed. If not, are you aware of different models or training processes that have been utilised within Australia and are considered current good practice?
To my understanding there are no other trainers for seizure alerting dogs in Australia only seizure response dogs. Internationally the main thrust is through scent discrimination. Many dogs trained with this methodology fail. We utilise a proprietary methodology that has been developed over the past 25 years and receive a very high degree of success. (as long as participants have at least a seizure every week we can almost guarantee results) Our methodology concentrates on the dog using all of her senses and instincts since not all seizures have a changed smell as a precursor.
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How many hours can a seizure alert dog reasonably be expected to provide assistance to its handler within a 24 hour period.
The dog can alert 24 hrs a day. The dog does this as a game and second nature and will even continue while she is sleeping. With for some of our participants that are having multiple seizures per day ongoing we require that the dog is taken off site on a regular basis (weekend away) to chill, have a vacation and destress.
Is the proposed assistance dog intended to act as a seizure alter dog, seizure response dog, assistance dog or a combination?
Seizure Alert - We have not yet conducted an in person assessment and the proposal is provided subject to such an assessment however we would see the seizure being primary (it is life threatening) and social and physical input secondary. The secondary tasks would become part of the regular day while the primary task becomes the trained event.
Examination-in-chief
Mr Picker told the Tribunal he has been CEO of CSTDA for over ten years. It has trained seizure dogs for approximately 25 years; he is involved in the managerial side of the business. CSTDA operates in Australia, Germany and Israel and has delivered dogs across the world. It has trained more than 10 seizure dogs locally and more than 25 globally. Mr Picker said he was unaware of any other organisations that train a seizure-alert dog; others train seizure-response dogs.
The Tribunal was told that CSTDA’s methodology with a dog was to train it to respond without direct command, which is very different to other assistance dogs, such as a guide dog. They ignore instincts or behaviours that are not required or wanted and reward those that are. A dog is socialised for between 12 to 18 months without any reference to its specific participant. After socialisation, CSTDA train the dog to ‘play the game’, being to see changes in the behaviour, body language, smell, touch, or taste of a participant. Mr Picker said there is ‘no one way of training a seizure-alert dog’, because ‘we really don’t know exactly what the dog is picking up on’. It can be smell or body language, but CSTDA train them across all of their senses. Once comfortable that the game is understood, the dog is introduced to the participant for integration and bonding. This is when the dog understands the participant is the focus. The dog will have to be taught that the participant’s response is sufficient for its purpose even if others around the participant may be more attractive to the dog.
On the participant side, CSTDA look at a person’s environment, such as family, friends, community and school. The participant is trained how to utilise the dog, so they don’t make any mistakes once it is acquired. For QTBR, she will not be undertaking the training, this will be done with her support team. Handover is closely monitored and there is ongoing support provided to the participant and their family.
The Tribunal was told that there had been one dog that was unsuccessfully placed because it had not been properly supported by the participant. If the dog is not doing what is required then it will be replaced. Mr Picker said a seizure-alert dog had ‘no limit’ to the length of its work, the dog viewed it as a game, but can occasionally get tired and is required to have a break and be removed from the environment to rest. A full in-person review of the environment and an ‘initial stage’ has not been conducted for QTBR, but Mr Picker did not consider it would be outside of what they had previously encountered.
Cross-examination
Since provision of this report, the NDIA has funded all of the above requested communication supports for QTBR, except item 4 from Ms Barty’s recommendations, being 32 hours of programming and training for QTBR’s speech output devices. A further report from Ms Barty, provided in advance of the hearing and dated 16 April 2021, relevantly stated in relation to this remaining disputed communication support that:[91]
With regard to: Programming and training of assistive technology. Assistive technology is “Aided” communication: it uses a physical, technological device. It is designed to allow the user to produce speech output using simpler movements. Use of this technology allows the user to learn and use words, phrases, sentences and longer utterances when their physical skills make speech and gesture development difficult. It can allow a person who is [sic] has severe difficulty or is unable to produce longer sequences of sounds for expressing themselves. This technology when set up, properly maintained and programmed can enable a person to communicate directly with peers and others using speech.
Assessment and trial has identified a suitable device. [QTBR] needs guided practice using the device during daily activities. The people who provide [QTBR] with daily support need be provided with skills training to effectively support [QTBR] with access to individually meaningful content and content that can grow to meet her developing skills and daily participation. If the device needs to be sent away for programming, [QTBR] will be without access for that time (at which time she will rely on her other communication strategies). Training for family/familiar support will enable them to perform basic trouble shooting and maintenance, as well as to be able to add or modify icons/content to better meet her day to day needs. Her developing language skills can also be more readily supported. Early difficulty and failure using this technology is associated with poor outcomes, suboptimal use and abandonment. For [QTBR], this would reinforce her reliance on/resorting to using challenging/inappropriate behaviour.
[91] Exhibit A7.
The NDIA contended that this disputed support duplicates another support it has already approved under QTBR’s NDIS plan and it therefore engages clause 5.1(c) of the Rules, whereby a support will not be provided or funded under the NDIS if it duplicates other supports delivered under alternative funding thorough the NDIS. Specifically, the NDIA has provided funding for QTBR to access 25 hours for the assessment and trial of assistive technology, which encompasses training in the funded speech output devices.
QTBR plainly requires, and receives, substantial support to develop and maintain her communication. This is vitally important for QTBR given her conditions. However, having regard to the evidence, the Tribunal is satisfied that the other support already approved and funded by the NDIA, in the form of 25 hours for the assessment and trial of assistive technology, can be used to achieve the same outcome as this disputed communication support. That is, there would be a duplication of supports if this Fourth Disputed Support was also funded by the NDIA. The Tribunal further finds, based on its finding regarding the duplication of supports already delivered by the NDIA, that funding this support would not represent value for money as required by subsection 34(1)(c) of the NDIS Act. For these reasons, the Tribunal concludes that the remaining disputed communication support is not a reasonable and necessary support for inclusion in QTBR’s statement of participant supports.
Fifth Disputed Support – Neurological and Physical Abilitation Centre (NAPA) intensive therapy
QTBR sought funding for intensive therapy with the NAPA, which describes itself as:[92]
one of the world’s leading clinics for specialised paediatric therapy and rehabilitation, particularly for multi-disciplinary intensive therapy programs…NAPA provides the Intensive Model of Therapy (IMOT), combining physiotherapy, occupational therapy, and speech therapy programs of an increased frequency and duration schedule, as compared to traditional therapy programs offered in Australia.
[92] Exhibit A7.
In an email from the clinic manager at the NAPA to QTBR’s Mother in January 2020, it is confirmed that QTBR’s information has been ‘assessed by our NAPA therapy team’ and QTBR ‘is a candidate for our NAPA therapy programs’ which, based on the information and goals provided by the Mother, would be an intensive program for QTBR conducted over three weeks and consisting of a daily 4-hour therapy combination of each of speech therapy, occupational therapy, physiotherapy and feeding therapy.[93]
[93] Exhibit R2, A23, pages 130-133.
A cost estimate provided in 2020 by the NAPA was $11,400 for 60 hours at $190 per hour over a three week intensive therapy program.[94] A further email from the NAPA to QTBR’s Mother provided this cost estimate and also noted that the total cost and hours to attend three distinct intensive three-week blocks was $34,200 for 180 hours.[95]
[94] Exhibit R2, A24, page 134.
[95] Exhibit R2, A25, page 135.
QTBR sought NDIA funding for 180 hours of intensive therapy with the NAPA.[96] This equates to three three-week intensive blocks of therapy, rather than the one three-week block contemplated in the NAPA’s initial email and accounted for in the accompanying cost estimate.
[96] Exhibit R2, A49, page 268.
Approximately one month before the hearing of this proceeding, QTBR completed one three week intensive therapy program with the NAPA.[97] QTBR’s Mother told the Tribunal that this intensive therapy was paid for with NDIA funding for QTBR’s therapy. A letter from the NAPA dated 20 April 2021 relevantly states that:[98]
[QTBR]’s medical specialist team have recommended she access as much therapy intervention as possible, as early as possible, and have specifically recommended intensive programs as they feel this will be very effective.
[QTBR]’s NAPA allied health therapy team also feel it is reasonable and necessary to do everything possible to ensure [QTBR] leads a comfortable, healthy and fulfilled life. She needs to be able to function safely and have good access to her home and community environments. She needs to be able to learn the skills necessary to be able to clearly communicate her needs to everyone she meets. She needs to be able to have the social skills to develop friendships and play skills. She needs to increase her motor planning skills, strength, stamina, and endurance, so she can control her body and be as independent, successful and functional as possible. The aim is for [QTBR] to gain and maintain wherever possible age appropriate skills, and for them to be done independently, with minimal assistance, or with the appropriate assistive technology in place to support her.
As she is still young, [QTBR]’s ability to continually improve and maintain her goals will only be possible with continued financial support for continued regular weekly and intensive therapeutic intervention. Intensive therapy programs are well supported by the NDIS now, and for [QTBR] being school age and living where there are no appropriate local services, Intensive programs offer both her and her family the best potential for continued improvement.
It is our professional opinion that without continued intervention, particularly on an intensive basis, [QTBR]’s future developmental skills will be significantly more compromised or may not progress at all.
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Please note, that when [QTBR] is participating in an intensive program, her local/weekly services are put on hold, so there is no double-up/duplication in services. The services work in a complementary and supportive way to ensure [QTBR] continues to progress.
It is our recommendation that [QTBR] can continue to attend 3 (Three) intensive programs each year as part of her ongoing capacity building needs. [QTBR]’s family are happy with the services and therapy program [QTBR] has recently received and have expressed a desire for [QTBR] to continue services with NAPA, but they will need funding to support [QTBR] joining the program, however.
[97] Exhibit A7.
[98] Exhibit A7.
The NAPA in this recent correspondence noted that a single three-week intensive therapy program for QTBR would cost $11,590, but recommended QTBR attend three three-week intensive therapy sessions each year, with the total cost being $35,530.[99]
[99] Exhibit A7.
There is no evidence in the recent NAPA report as to QTBR’s progress and how that is different to that achieved by the regular ongoing therapy already funded by the NDIA. QTBR’s paediatrician, Dr Masson, also could not say that intensive therapy had led to better outcomes for QTBR as opposed to her regular therapy already funded by the NDIA. In this regard, the Tribunal finds that this disputed support would result in duplication of therapies already funded by the NDIA as ‘reasonable and necessary supports’ under QTBR’s NDIS plan and that it therefore engages clause 5.1(c) of the Rules. The NDIA has funded the following supports for QTBR, exceeding 200 hours of therapy:
(a) 48 hours of occupational therapy;
(b) 48 hours of physiotherapy;
(c) 6 hours of hydrotherapy;
(d) 42 hours of prompt therapy (specialised speech therapy);
(e) 4 hours for gait and orthotic management; and
(f) 60 hours for HABIT_ILE intensive program (Hand and Arm Bimanual Intensive Training Including Lower Extremity).
As previously stated, the existing NDIA funding for QTBR’s therapy was used for her to undertake a three-week intensive NAPA session. As a result, there is nothing preventing this type of arrangement continuing with the existing therapy support funding provided by the NDIA, especially because it appeared to be the preference of QTBR’s family, due to their location and the purported benefits to QTBR, for intensive therapy to be delivered in conjunction with some ongoing therapy. That is, there is no obligation to use the current NDIA funding for QTBR’s therapy on a weekly or regular basis, rather than in an intensive block of therapy.
Having regard to the evidence, the Tribunal finds that clause 5.1(c) of the Rules is engaged in relation to this Fifth Disputed Support because it would duplicate other supports delivered under alternative funding through the NDIS. As a result, based on the Tribunal’s finding regarding the duplication of supports already delivered by the NDIA, funding this support would not represent value for money as required by subsection 34(1)(c) of the NDIS Act. Accordingly, the Tribunal finds that the Fifth Disputed Support is not a reasonable and necessary support for inclusion in the statement of participant supports in QTBR’s NDIS plan.
Sixth Disputed Support – Low risk and low cost Assistive Technology
QTBR sought funding in the amount of $2,690.45 for the provision of low risk and low cost assistive technology.
These items were said to include, but not be limited to, the following: angled built-up cutlery to allow independent feeding, dysphagia cup with spout to allow independent drinking, scoop dishes to allow QTBR to learn to self-feed, waterproof wheelchair poncho and blanket to be outside during inclement weather, side fastening snug to allow outside play in cold weather, wheelchair clothing while out in the community and at school, cooling vest kit to support QTBR to remain cool and comfortable when travelling with her family, applications for speech to allow QTBR to communicate her needs, and sign language applications to allow carers and family to communicate with QTBR.[100]
[100] Exhibit R2, A15, pages 87-92.
The NDIA has approved funding in QTBR’s NDIS plan for cutlery, a dysphagia cup and also a thumb splint. Additionally, communication supports have also been funded.
In relation to the remaining items for this Sixth Disputed Support, QTBR relied, in her Statement of Facts, Issues and Contentions filed in this proceeding, on the evidence of Ms Kinza Newman, Occupational Therapist, and specifically her report dated 7 January 2020, which relevantly stated as follows:[101]
[QTBR] requires a variety of low risk, low cost items. These are likely to include modified cutlery, cups, placemats, bowls, adaptive clothing and applications bought to assist with therapy and daily routines related to disability. These items will greatly increase [QTBR’s] safety and independence in activities of daily living and increase her capacity to participate in leisure and education pursuits throughout the year. These items will be bought by [QTBR’s] family as required and are likely to be in excess of $3,000.00 per year. It is therefore very beneficial and reasonable for [QTBR] to have access to these items which should be supported through the NDIS as they are required as a direct result of her disability.
[101] ibid.
Additionally, QTBR filed a further report from Ms Newman dated 21 April 2021 in advance of the hearing, which further referred to this Sixth Disputed Support. She was not called to give evidence at the hearing and was therefore unable to be questioned about her statements regarding this disputed support, in addition to the NDIA not having the opportunity to consider and provide any response to her subsequent report due to the lateness of its provision. However, the Tribunal notes that Ms Newman relevantly said in relation to this disputed support that ‘no other family with a 9-year-old child would need to consider the purchase of disability specific’ items and that they were ‘required due only to [QTBR]’s disability and is therefore most appropriately funded through NDIS.’ [102]
[102] Exhibit A7.
There was minimal substantive evidence before the Tribunal in relation to this Sixth Disputed Support and it is difficult, on the available evidence, for the Tribunal to be satisfied that the requested supports will be, or are likely to be, effective and beneficial for QTBR, having regard to current good practice. However, even if this criterion under subsection 34(1)(d) of the NDIS Act were met, the Tribunal is not satisfied that the subsequent criterion is met.
Subsection 34(1)(e) of the NDIS Act requires satisfaction that the funding or provision of the support takes account of what it is reasonable to expect families, among others, to provide. Despite Ms Newman’s above-mentioned statement, the Tribunal finds that this requested support does not take into account what it is reasonable for QTBR’s family to provide. The Tribunal is satisfied that it is reasonable to expect QTBR’s family to provide these requested items, which includes clothing and equipment for a child accessing the community in different types of weather, even in circumstances where many are wheelchair-specific or related items. For example, some of these items are a version of outdoor weather clothing that the family would ordinarily need to provide any of their children and the Tribunal considers it reasonable for them to do so, rather than the NDIA, having regard to the available evidence. To this end, Ms Newman had previously stated that the family will buy these items as required, although noted their cost. For the preceding reasons, the Tribunal is not satisfied on the available evidence that this disputed support meets the criteria in subsection 34(1)(e) of the NDIS Act.
Accordingly, as not all elements of subsection 34(1) of the NDIS Act are met in relation to this Sixth Disputed Support, the Tribunal is not satisfied that it is a reasonable and necessary support to be funded by the NDIA and included in QTBR’s statement of participant supports.
Seventh Disputed Support – An additional 30 hours of Capacity Building Supports for Report Writing
While QTBR sought funding for report writing, this disputed support was neither addressed in her Statement of Facts, Issues and Contentions filed in this proceeding nor were submissions made at the hearing on behalf of QTBR in relation to this disputed support. However, QTBR’s representative did confirm to the Tribunal at the hearing that she pressed her request for all disputed supports when the Tribunal discussed with the parties the supports that remained in dispute in this proceeding.
There was, however, little evidence regarding this disputed support advanced by QTBR in the proceeding. Ms Kinza Newman, Occupational Therapist, referred to this Seventh Disputed Support in her report dated 21 April 2021, which was filed shortly in advance of the hearing. However, it was unclear from her statements and on the evidence generally why this specific funding for report writing was required for QTBR in addition to already funded support that could be used for report writing expenses. For instance, Ms Newman said in relation to this disputed support that:[103]
Provision of additional hours for support would increase the capacity of services to provide adequate support for [QTBR] to have the optimal chance of reaching her goals… By having these additional hours available, [QTBR] will be able to get the required hours of therapy despite her illness and instability.
…
The frequency with which NDIS is rejecting initial requests for support an AT [Assistive Technology] also further increases the time required for clinicians to provide reports to meet client needs.
[103] Exhibit A7.
In QTBR’s current NDIS plan, which runs for six months, the NDIA has provided funding in the amount of almost $28,000 for improved daily living under Capacity Building Supports.
On the available evidence, the Tribunal is not satisfied that the existing capacity building funding from the NDIA is insufficient to meet any report writing expenses in relation to QTBR. Accordingly, the Tribunal is not satisfied that all of the criteria in subsection 34(1) of the NDIS Act are met in relation to this Seventh Disputed Support for them to be funded as a reasonable and necessary support in QTBR’s statement of participant supports.
CONCLUSION
It was readily apparent to the Tribunal that QTBR’s parents are doing everything possible to help her reach her goals, become as independent as possible and live as normal a life as possible given her impairments. The Family Impact Statement produced by QTBR’s Mother in this proceeding reflects their deep commitment to QTBR and her needs which, it is acknowledged, have been detrimental to other matters in their family life.[104] In difficult circumstances, their dedication is admirable. Understandably, QTBR’s family want to provide her with as much support as possible to help her live her best life. They say in their statement that:[105]
Our vision for our daughter is for her to be as independent as she can be throughout her life and because of this we are constantly exploring and trying new ways for her to develop, reach her milestones and be included in her community…
[104] Exhibit R2, A50, pages 283-289.
[105] ibid., page 283.
The NDIA is currently providing substantial support to QTBR. During the hearing, the NDIA approved further support that had until then been in dispute in this proceeding. However, at this time, and weighing all the evidence, the additional requested supports that remained in dispute do not, as a result of the Tribunal’s findings, meet the necessary criteria to be approved as ‘reasonable and necessary’ for inclusion in the statement of participant supports in QTBR’s NDIS plan.
DECISION
The Tribunal affirms the decision under review pursuant to subsection 43(1)(a) of the Administrative Appeals Tribunal Act 1975.
I certify that the preceding 252 (two hundred and fifty-two) paragraphs are a true copy of the reasons for the decision herein of Member W Frost.
.....................................[sgd]...................................
Associate
Dated: 28 June 2021
Date(s) of hearing:
3-6 May 2021
Date final submissions received:
Representative for Applicant:
26 February 2021
Mr Malcolm Charlton, Synapse NSW
Counsel for Respondent:
Ms Prue Bindon
Solicitor for Respondent:
Ms Clovelly Broad, NDIA
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