HVMQ and National Disability Insurance Agency
[2024] AATA 86
•29 January 2024
HVMQ and National Disability Insurance Agency [2024] AATA 86 (29 January 2024)
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2022/10387
Re:HVMQ
APPLICANT
AndNational Disability Insurance Agency
RESPONDENT
DECISION
Tribunal:Member T Bubutievski
Date:29 January 2024
Place:Sydney
The Tribunal sets aside the decision under review and remits the matter for reconsideration, with a direction that HVMQ meets the early intervention requirements for access to the National Disability Insurance Scheme as set out in section 25 of the National Disability Insurance Scheme Act 2013 (Cth).
............................[SGD]............................................
Member T Bubutievski
Catchwords
NATIONAL DISABILITY INSURANCE SCHEME – access – VACTERL Association – neurogenic bladder and bowel – unable to toilet independently – whether there is substantially reduced functional capacity – whether the provision of early intervention supports is likely to benefit the person – whether early intervention supports are most appropriately funded by the NDIS – decision under review set aside
Legislation
National Disability Insurance Scheme Act 2013 (Cth)
National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth)
Cases
Mulligan v National Disability Insurance Agency [2015] FCA 544
Madelaine and National Disability Insurance Agency [2020] AATA 4025
National Disability Insurance Agencyv Foster [2023] FCAFC 11
HPSC and National Disability Insurance Agency [2021] AATA 727
Kilgallin and National Disability Insurance Agency [2017] AATA 186Young and National Disability Insurance Agency [2014] AATA 401
Secondary Materials
National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) < Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) < Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) < FOR DECISION
Member T Bubutievski
29 January 2024
This application is about whether HVMQ should be granted access to the National Disability Insurance Scheme (the NDIS). At the time of her application to become a participant, she was 12 years of age. In her application for access to the NDIS, HVMQ’s primary disability is described as VACTERL association with associated neurogenic bladder and bowel, hypoplastic sacrum, congenital single right kidney, and hydronephrosis. This is a congenital condition which has been present since birth and is a lifelong condition.[1] Section 2 of this form was completed by Dr Heather Burnett, a paediatric rehabilitation medicine physician with HNEKidsRehab (HNEKids).
[1] Exhibit 1, 27-34.
Following her application to become a participant, the National Disability Insurance Agency (NDIA or the Agency) decided, on 30 September 2022,[2] that HVMQ was ineligible to access the NDIS. Her mother, Ms HVMQ, sought internal review of this decision by the Agency and on 2 December 2022,[3] an Agency decision maker affirmed the decision. It is this reviewable decision of the Agency which is the subject of HVMQ’s application to this Tribunal for exernal merits review under section 103 of the National Disability Insurance Scheme Act 2013 (Cth) (the NDIS Act).
[2] Ibid 64-69.
[3] Ibid 35-45.
HVMQ contends that she meets the access criteria under section 21 of the NDIS Act.
To gain access to the NDIS, under section 21 of the NDIS Act, HVMQ is required to meet:
(a)the “age” access criteria;
(b)the “residence” access criteria; and
(c)either the “disability” access criteria or the “early intervention” access criteria.
The Agency accepts that HVMQ meets both the “age” and “residence” access criteria but contends that she does not meet the “disability” or “early intervention” access criteria.
LEGISLATIVE FRAMEWORK
Section 24 of the NDIS Act provides as follows:
(1)A person meets the disability requirements if:
(a) the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or the person has one or more impairments to which a psychosocial disability is attributable; and
(b) the impairment or impairments are, or are likely to be, permanent; and
(c) the impairment or impairments result in substantially reduced functional capacity to undertake one or more of the following activities:
(i)communication;
(ii)social interaction;
(iii)learning;
(iv)mobility;
(v)self-care;
(vi)self-management; and
(d)the impairment or impairments affect the person’s capacity for social or economic participation; and
(e)the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime.
(2) For the purposes of subsection (1), an impairment or impairments that vary in intensity may be permanent, and the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime, despite the variation.
The early intervention requirements are set out in section 25 of the NDIS Act:
(1)A person meets the early intervention requirementsif:
(a)the person:
(i)has one or more identified intellectual, cognitive, neurological, sensory or physical impairments that are, or are likely to be, permanent; or
(ii)has one or more identified impairments to which a psychosocial disability is attributable and that are, or are likely to be, permanent; or
(iii)is a child who has developmentaldelay; and
(b)the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by reducing the person’s future needs for supports in relation to disability; and
(c)the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by:
(i)mitigating or alleviating the impact of the person’s impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management; or
(ii)preventing the deterioration of such functional capacity; or
(iii)improving such functional capacity; or
(iv)strengthening the sustainability of informal supports available to the person, including through building the capacity of the person’s carer.
Note: In certain circumstances, a person with a degenerative condition could meet the early intervention requirements and therefore become a participant.
(1A) For the purposes of subparagraph (1)(a)(i) or (ii), an impairment or impairments that are episodic or fluctuating may be taken to be permanent despite the episodic or fluctuating nature of the impairments.
(2)The CEO is taken to be satisfied as mentioned in paragraphs (1)(b) and (c) if one or more of the person’s impairments are prescribed by the National Disability Insurance Scheme rules for the purposes of this subsection.
(3)Despite subsections (1) and (2), the person does not meet the early intervention requirements if the CEO is satisfied that early intervention support for the person is not most appropriately funded or provided through the National Disability Insurance Scheme, and is more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or through systems of service delivery or support services offered:
(a)as part of a universal service obligation; or
(b)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
Section 27(a) of the NDIS Act provides that the NDIS rules may prescribe circumstances in which, or criteria to be applied in assessing whether one or more impairments are, or are likely to be, permanent for the purpose of section 24(1)(b) or section 25(1)(a)(i) or (ii) of the NDIS Act. Such rules have been prescribed, namely, the National Disability Insurance Scheme (Becoming a Participant) Rules 2016 (Cth) (NDIS Access Rules). The Tribunal is bound to apply the legislation as enacted, including the NDIS Access Rules.
Specifically, rule 5.8 of the NDIS Access Rules elaborates upon when an impairment is taken to have resulted in a ‘substantially reduced functional capacity’ to undertake any one or more of the relevant activities in relation to subsection 24(1)(c) of the NDIS Act and provides as follows:
5.8An impairment results in substantially reduced functional capacity of a person to undertake one or more of the relevant activities—communication, social interaction, learning, mobility, self-care, self-management (see paragraph 5.1I)—if its result is that:
(a)the person is unable to participate effectively or completely in the activity, or to perform tasks or actions required to undertake or participate effectively or completely in the activity, without assistive technology, equipment (other than commonly used items such as glasses) or home modifications; or
(b)the person usually requires assistance (including physical assistance, guidance, supervision or prompting) from other people to participate in the activity or to perform tasks or actions required to undertake or participate in the activity; or
(c)the person is unable to participate in the activity or to perform tasks or actions required to undertake or participate in the activity, even with assistive technology, equipment, home modifications or assistance from another person.
[Paragraph 5.8 is made for the purposes of paragraph 27(b) of the Act.]
The objects of the NDIS Act are set out in section 3. These include giving effect to international treaty obligations; supporting the independence and social and economic participation of people with a disability; and providing reasonable and necessary supports for participants. Section 4 sets out general principles guiding actions under the NDIS Act. These include that people with disability have the same right as other members of society to realise their potential and should be supported to participate in and contribute to social and economic life to the extent of their ability. They should also have certainty that they will receive the care and support that they need over their lifetime. The Tribunal has considered the objects and general principles of the NDIS Act in making its decision.
The NDIA has issued Operational Guidelines including in relation to the access criteria under the NDIS Act (Operational Guidelines). The Operational Guidelines are published on the NDIA’s website.[4] The way they are written has changed significantly over time to make them more user friendly for potential applicants and participants in the NDIS, but the important parts of the content have not been greatly altered. The Tribunal also had regard to the Operational Guidelines in coming to its decision.
[4] National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) <>
At the Tribunal’s request, the Respondent provided a joint tender bundle, which contained the sum of all the documents lodged by both parties. This was taken into evidence (Exhibit 1). As a statement made by Ms HVMQ, dated 31 August 2023, had not been included in full, it was also admitted separately (Exhibit 2).
The Respondent relied upon its Statement of Facts, Issues and Circumstances (SFIC), dated 18 July 2023.[5] The Applicant relied on her SFIC dated 1 September 2023.[6]
[5] Exhibit 1, 285-297.
[6] Ibid 226-240.
Ms HVMQ gave evidence and called Ms Jamila Bailey, clinical psychologist, and Ms Sharon Fenwick, clinical nurse practitioner, to give evidence. The Respondent called Ms Karolina Petrovska, an independent expert occupational therapist.
During the course of the hearing, the Applicant provided further documents about the NDIS’s funding parameters for continence consumables; its operational guidelines about continence support and disability related health support; and its code guide for assistive technology, home modification and consumables. The Tribunal also had regard to these documents.
Both parties made final submissions in writing - the applicant on 4 December 2023 and the Respondent on 8 December 2023.
ISSUES BEFORE THE TRIBUNAL
In making the access decision in HVMQ’s case, the Agency decided that HVMQ met the criteria in subsection 24(1)(a) of the NDIS Act, as having a disability attributable to ‘VACTERL association (with associated neurogenic bladder and bowel, hypoplastic sacrum, congenital single right kidney and hydronephrosis)’.[7]
[7] Ibid 64-70.
The Agency did not accept that HVMQ had a substantially reduced functional capacity as a result of her disability. It also decided that HVMQ did not qualify for access to the NDIS under the early intervention criteria because ‘…the recommended supports are not capacity building in nature, and are therefore not likely to reduce [HVMQ’s] future support needs’.[8]
[8] Exhibit 1, 64.
On internal review, the reviewer decided that HVMQ has a disability which causes a permanent functional impairment.[9] It was accepted that HVMQ meets the criteria in section 24(1)(a) of the NDIS Act in respect of the disability attributable to a physical impairment as a result of the condition of anorectal malformation secondary to VACTERL association including neurogenic bladder and bowel, hypoplastic sacrum, congenital single right kidney and hydronephrosis.
[9] Ibid 36.
The Agency accepted that HVMQ consequently has permanent neurological and physical impairments. It did not accept that these impairments cause a substantially reduced functional capacity, although it did accept that the condition means that HVMQ experiences challenges which prevent her from fully participating in some tasks, and some tasks may need to be completed in a modified way.[10] The Agency was of the view that HVMQ does not require a high level of support from other people, assistive technology or home modifications.[11]
[10] Ibid 38.
[11] Ibid 39.
The Agency was satisfied that HVMQ’s impairments impact on her capacity for social and economic participation but did not find that HVMQ would require support from the NDIS for her lifetime.[12] This is a conclusion which flows from a determination that a person does not have a substantially reduced functional capacity. The reviewer concluded that the criteria in subsections 24(1)(c) and (e) were not met.[13]
[12] Ibid 39-40.
[13] Ibid.
The Agency was also of the view that HVMQ did not meet the qualification requirements to access the NDIS through the early intervention criteria set out in section 25 of the NDIS Act. It was not satisfied that the recommended supports would reduce HVMQ’s future support needs in relation to her disability. It also did not find that the NDIS was the most appropriate system to fund the requested supports. This meant that the criteria set out in sections 25(1)(b) and 25(3) were not satisfied.[14]
[14] Ibid 41-42.
It was common ground between the parties that HVMQ met the age requirements in section 22 and the residence requirements in section 24 at the time that she applied for access to the NDIS. It was also common ground that HVMQ’s VACTERL association results in permanent impairment. The NDIA argued that:
(a)HVMQ does not have a substantially reduced functional capacity in any of the relevant domains – section 24(1)(c);
(b)HVMQ is not likely to require the support of the NDIS for her lifetime – section 24(1)(e);
(c)the recommended supports will not reduce HVMQ’s future support needs – section 25(1)(b);
(d)the recommended supports will not benefit HVMQ by achieving one or more of the outcomes listed in section 25(1)(c) - section 25(1)(c); and
(e)support for HVMQ’s conditions is not most appropriately provided through the NDIS – section 25(3).
HVMQ contended that she does have a substantially reduced functional capacity in the domain of self-care and will require the support of the NDIS for her lifetime. In opening submissions, the Applicant referred to the fact that HVMQ needs assistive technology, prompting and assistance to empty her bladder and bowel. She also experiences cramping and light-headedness following bowel washouts and may need to be in bed for up to a day. She requires prompting with eating and drinking as she is engaged in restricting her intake of food and fluid in an attempt to lessen the frequency of her catheterisations and washouts. It was argued that HVMQ’s impairments in the area of self-care cover personal care, hygiene, eating and drinking and health. Her goal is to ultimately have her MACE closed, and to be able to evacuate her bowel by doing her own trans-anal irrigation, which will require further surgery, equipment, education and support.
It was also argued that HVMQ meets the early intervention criteria for access to the NDIS because many of the recommended supports are in the nature of early intervention, intended to improve her confidence and skills and so reduce her future support needs. HVMQ contends that these supports are most appropriately funded by the NDIS.
The first question the Tribunal must answer is whether HVMQ’s impairments result in substantially reduced functional capacity to undertake one or more of the activities listed in section 24(1)(c) of the NDIS Act. The case law has established several important principles about how to undertake that assessment. In Mulligan,[15] it was found that what is being assessed is what an Applicant can and cannot do. It is sufficient for an Applicant to have substantially reduced functional capacity in relation to just one functional domain.[16] The relevant test is not how much better HVMQ’s life would be if she had access to NDIS supports, although such access would be likely to improve her quality of life.[17]
[15] Mulligan v National Disability Insurance Agency [2015] FCA 544 [56] (‘Mulligan’).
[16] Ibid.
[17] Madelaine v National Disability Insurance Agency [2020] AATA 4025, [72]-[73].
The next question that the Tribunal must consider is whether HVMQ meets the criteria for access to the NDIS through the early intervention pathway. This is dependent upon the requested supports being related to her disability and likely to reduce her future support needs. It also requires that the supports be best funded by the NDIS, not another agency or system.
For the reasons set out below, the Tribunal is satisfied that the evidence does not establish that HVMQ has a substantially reduced functional capacity in the domain of self-care. She does not meet the requirements of section 24 of the NDIS Act for access to the NDIS.
Nonetheless, the Tribunal is satisfied that the recommended supports are capacity building and will reduce HVMQ’s need for future support. Further, the Tribunal is satisfied that these supports are most appropriately funded through the NDIS. HVMQ does meet the requirements of section 25 of the NDIS Act for access to the NDIS under the early intervention criteria.
FACTS
The medical evidence
The medical evidence before the Tribunal is that HVMQ has VACTERL association. This is a congenital disorder which is responsible for a cluster of neurological and physical symptoms. These can vary from patient to patient. HVMQ experiences neurogenic bladder and bowel, hypoplastic sacrum, and has a single right kidney which is subject to hydronephrosis. In HVMQ’s case, she has an anterior anus with an anorectoplasty performed in 2010 and the subsequent surgical creation of a Malone antegrade colonic enema (MACE) channel in 2018, which is capped by a stoma or button for the purposes of performing anal washouts. HVMQ is unable to evacuate her bowel without a manual flush or manual evacuation, or disimpaction under general anaesthetic. HVMQ also cannot fully empty her bladder without performing clean intermittent catheterisation several times per day. She will need assistance to empty her bladder and her bowel for the rest of her life.[18]
[18] Exhibit 1, 7-10; 12-13.
There is also evidence before the Tribunal that as a consequence of her physical and neurological impairments and their impact on her, HVMQ has developed an adjustment disorder.[19]
[19] Ibid 54-55; 213-216; 217-220.
HVMQ’s diagnoses and disabilities are not in dispute, nor is the fact that she has disabilities which caused her to experience a functional impairment in the activity of self-care. The Respondent notes that the conditions for which HVMQ has sought access to the NDIS are those relating to the functional impairments from her VACTERL association, and not impairments of psychosocial functioning.
Ms HVMQ’s Evidence
Ms HVMQ confirmed the evidence she had already given in her statements of 10 July 2022 and 31 August 2023. She said that days in her household have a variable start. She wakes HVMQ about 6:00AM. Ms HVMQ confirmed that HVMQ has a bowel washout four days per week. Ms HVMQ prepares the solution for the washout and pours it into a kangaroo bag. Ms HVMQ primes the line and HVMQ now plugs the line into her MACE. Ms HVMQ stated that if the washout was not running correctly through the MACE, she may have to flush it with a syringe to clear the blockage. Ms HVMQ says that she does not stay in the bathroom with HVMQ, but she does stay within earshot in case she has a problem, and she does check on her regularly while the bowel washout is running. If the procedure has gone well, HVMQ will then have a shower and go to school. If it has not, she may experience cramping sweating and feeling unwell and will need to go back to bed for either half the day or the whole day. Ms HVMQ estimated that HVMQ misses 30% of school days and that she also frequently misses work because she needs to stay and keep an eye on HVMQ.
Ms HVMQ explained that prior to the bowel washouts HVMQ required daily enemas. The bowel washouts commenced after the MACE operation in 2018. Ms HVMQ said that she received very little training about the bowel washouts in the hospital. She said that she and HVMQ have learnt a lot more about it from Ms Fenwick. Ms HVMQ stated that they had tried a number of solutions for the bowel washouts, including salt solution and Movicol. Each solution would stop working after a period of time and she would then have to have a manual disimpaction. HVMQ has not needed a manual disimpaction this year, although she has had many in the past.
They are now using Glycoprep for the bowel washouts, which is working well. Ms HVMQ explained that HVMQ’s faecal smearing decreases when her bowel is not so impacted by faeces. Originally the washouts were morning and night, but now they are just in the morning. If HVMQ needs them more than four times per week, she has them more often. HVMQ does have them when she is staying with her father. HVMQ has not had any training in bowel washouts. Ms HVMQ explained that there had been no stoma therapy nurse available at the time of HVMQ’s operation. Ms HVMQ stated that when HVMQ’s MACE prolapsed she had no idea what to do or who to contact. In the end, HVMQ had to be put under a general anaesthetic and have stitches to put the MACE back in place. Ms HVMQ explained that the MACE leaks and causes irritation and redness around the site of the MACE. They have gone through several different types of dressings in an attempt to control the leakage. The MACE requires regular replacement and Ms HVMQ cannot afford to have it replaced as often as is recommended. The hospital only replaces it for free if it is no longer functional.
Ms HVMQ advised that she prepares the solution for the bowel washouts as it fizzes up, and the one time she let HVMQ prepare the solution she spilt it and made a mess.
Ms HVMQ confirmed that the medical requirement is for HVMQ to catheterise six times per day. She said that HVMQ has only catheterise six times per day on around four occasions. She said that normally HVMQ catheterises in the morning, after school and before bed. Sometimes she catheterises less than three times a day. Ms HVMQ explained that the need to catheterise causes HVMQ to be resistant, and they fight about it a lot. She stated that HVMQ cries and says that she wants to be a normal kid, which Ms HVMQ finds very draining. Ms HVMQ stated: ‘nine out of 10 times I don’t get her to do it if there’s a fight’.[20]
[20] Transcript Day 1, 17, line 44.
Ms HVMQ stated that she has set up a caddy in the bathroom with the supplies that HVMQ needs to do her catheterisations. Ms HVMQ said that she waits outside the door. HVMQ can usually catheterise without Ms HVMQ’s physical assistance. She sometimes has to help HVMQ with the catheterisation and had done so once in the month prior to the hearing. She said that if HVMQ has difficulty with the procedure she may need to provide her with emotional support afterwards if she is in pain or upset. HVMQ refuses to catheterise at school, although the school offered to provide a private place for her to do it and a staff member to be trained to assist her if necessary.
Ms HVMQ explained that she had previously been reminding HVMQ to catheterise by using alarms on HVMQ’s phone. This technique was effective. HVMQ’s father asked her to take them off because they were interfering with his lifestyle. Ms HVMQ said that HVMQ also takes medication for bladder relaxation which she does routinely at 8:00AM and 8:00PM. Ms HVMQ said that they also tried encouraging HVMQ to catheterise by paying her $1 for each catheterisation or giving her a can of oysters, which she loves. This did not work for long. Ms HVMQ confirmed that HVMQ does not experience bladder linkages, but the frequency of HVMQ’s catheterisations has reduced since they stopped using the alarms. Ms HVMQ confirmed that she is home from work by the time HVMQ does her afternoon catheterisation.
Sometimes Ms HVMQ needs to give HVMQ an enema. She is not comfortable with anyone other than Ms HVMQ and her paternal grandmother giving her an enema. Ms HVMQ explained that the procedure takes two people and that HVMQ ‘will clench her bottom together’’[21] to try and prevent the enema being administered. Ms HVMQ stated that it could take anywhere from five minutes to thirty minutes to administer an enema if it is required. She said that after an enema HVMQ is hot, sweaty, clammy and won’t move, so Ms HVMQ needs to clean her up. Ms HVMQ said that HVMQ has not needed an enema for a while.
[21] Transcript Day 1, 19, line 30.
Ms HVMQ stated that HVMQ has a consultation with the continence nurse about three times per year. HVMQ also receives catheters through the Enable NSW program. Ms HVMQ said that the amount of catheters available to HVMQ currently meets her needs because she is only catheterising three times per day. If she was catheterising the recommended six times per day there would not be enough funding. Ms HVMQ noted that the catheters supplied by Enable NSW are harder than the one that is recommended, and they have not been able to access the preferred brand through that supplier. Ms HVMQ stated that she receives a small amount of CAPS funding ($300) which she uses for continence pads for smearing and Bonds undies with the pads in them. Ms HVMQ stated that they do not use the recommended brand of gloves and she pays most of the out-of-pocket costs for the needs associated with HVMQ’s condition.
Ms HVMQ stated the requirement for HVMQ to undertake clean intermittent catheterisation six times per day commenced in June 2022. At that time, Ms Fenwick, the continence nurse, came to their house and trained Ms HVMQ and HVMQ in the procedure. Prior to this they had spoken about the catheterisation and Ms Fenwick had demonstrated it for HVMQ. They also commenced to see Ms Bailey before they started trying to teach her to catheterise. Ms HVMQ said that HVMQ was unable to feel things properly while sitting on a toilet, although she could do so when lying on the bed. She was reluctant to ‘feel around’ in front of Ms HVMQ and Ms Fenwick. Ms HVMQ said it took a lot of time for HVMQ to be able to do the procedure. Ms HVMQ stated that Ms Fenwick had told her that HVMQ requires more training.
HVMQ is currently seeing Ms Jamila Bailey, a clinical psychologist, about every six weeks. This service is funded through NSW Health. Ms HVMQ explained that Ms Fenwick comes into HVMQ’s appointments with Ms Bailey and with Dr Burnett. She stated that HVMQ had seen Ms Fenwick five or six times in the past 12 months and Ms Fenwick had also always been contactable by phone. Ms HVMQ stated that HVMQ will talk to Ms Fenwick about the problems she is having but is reluctant to do so. Ms HVMQ stated that HVMQ refuses to talk to the bowel specialist at all.
Ms HVMQ said that HVMQ had recently had a break from seeing Ms Bailey but had recommenced psychology with a lady called Sarah, who she is seeing every two weeks. She had not seen anyone prior to Ms Bailey. Ms HVMQ said that her understanding was that these sessions are to help HVMQ with the continued transition to self-catheterisation and the sessions cannot be long-term. Ms HVMQ said that she was in the process of getting a mental health plan for HVMQ from the general practitioner (GP). She stated that HVMQ was more engaged with the psychology after a break.
Ms HVMQ noted that HVMQ says that she feels sick every time she eats and that at the time of the Tribunal hearing she appeared to have a urinary tract infection, and Ms HVMQ was planning to take her to the hospital. Ms HVMQ explained that her symptoms of a urinary tract infection are not the same as most people, as she gets pain in her thighs and is unwilling to walk. She was last hospitalised for a urinary tract infection over 12 months before the hearing, but since then she has had urinary tract infections which have been managed with antibiotics.
Ms HVMQ explained that HVMQ has faecal smearing nearly all the time and she is so used to it that she does not notice that she smells. She will often not notice the smearing until she sees it on her underwear. Ms HVMQ stated that she needs to tell HVMQ to change the dressings on her MACE, have a shower, or change her pants and then Ms HVMQ must check that she is clean. The skin on her perineum breaks down and needs to be treated with Bepanthen or Sudocream. Ms HVMQ said that she tends to be the one to apply the cream as HVMQ cannot get to the site because of its location.
Ms HVMQ stated that HVMQ does not like a lot of foods and needs to be prompted to eat. She also has to be prompted to drink. Ms HVMQ said that she supplies multiple water bottles, but HVMQ drinks very little. HVMQ also refuses to take food to school. Ms HVMQ said that she packs additional food with her sister who goes to the same school, but HVMQ does not eat it. Ms HVMQ said that she sits with HVMQ to make sure that she eats, as HVMQ can sit at the table for an hour and not take a mouthful.
Ms HVMQ said that her employment options are limited because of the care that she provides to HVMQ. She works permanent part-time as an assistant in nursing at a nursing home. Ms HVMQ is a single mother to 6 children. HVMQ stays with her father and paternal grandmother every Wednesday and every second weekend.
Ms HVMQ confirmed that HVMQ can communicate perfectly well, but often does not communicate. She agreed that she has no mobility issues unless she has a urinary tract infection. She has no impairments to her learning but is missing a lot of school. Socially, she has one good friend. This is the only friend that HVMQ has told about her condition. Ms HVMQ said that HVMQ does not have a big group of friends and does not participate in other social activities or sport due to needing to catheterise. She does often go to the park with her friend for an hour or so after her afternoon catheterisation. Ms HVMQ stated that HVMQ uses Facebook and Snapchat and is able to behave appropriately socially, but that she is very shy.
Ms HVMQ stated that HVMQ needs to be reminded to have breakfast and prompted to take food to school. Ms HVMQ told the Tribunal that there is often a fight about having breakfast and HVMQ usually refuses to take food to school. She has to be reminded to get ready for school. Ms HVMQ takes her to school. Ms HVMQ said that HVMQ refuses to do homework. She does participate in the weekly chore rota with her siblings, which includes cleaning the toilets, vacuuming, stacking the dishwasher and dusting. They are paid for these activities by having their phones remain connected. Ms HVMQ takes their phones until the chores are done.
Ms HVMQ stated that HVMQ does not like to accept responsibility for what she’s done or to see other’s point of view. She acknowledged that HVMQ probably manages her life as well as any other 13-year-old girl. Ms HVMQ stated that HVMQ will brush her hair and clean her teeth without prompting but does need to be prompted to have a shower.
Ms HVMQ explained that she would like a support worker to assist HVMQ with her catheterisations and bowel washouts, as it would take the pressure off her. She explained that her own mother had a stroke two years ago and cannot assist her.
Ms HVMQ was asked about the devices that have been requested – the MACE and the Trans-Anal Device (TAD). Ms HVMQ said that her understanding was that both devices do the same thing in washing out the bowel, but that the aim is to eventually use the TAD and close the MACE off. She understood that HVMQ would need both devices while she got used to the TAD, but that the TAD would ultimately be less invasive and less smelly. There would also be less chance of prolapse, leakage and infection with the TAD. Ms Fenwick showed them videos of the TAD and HVMQ has played with it. ‘HVMQ’s goal is to not have that MACE anymore, because when it is leaking it smells. It’s disgusting.’[22] They have not yet been able to start training with the TAD because both the training and the device cost money that they do not have.
[22] Transcript Day 1, 41, lines 22-23.
Evidence of Ms Karolina Petrovska, independent expert occupational therapist
Ms Petrovska provided an expert report dated 14 April 2023. Ms Petrovska graduated from University of Sydney in 1995 and has worked in Australia and internationally. She noted that she would like to make one amendment to her report. In this report she says that HVMQ requires assistance with mobility. Ms Petrovska advised the Tribunal that this was an error and HVMQ does not require assistance with mobility.
Ms Petrovska explained that she conducted a 90-minute assessment and spoke with HVMQ and Ms HVMQ. She did not observe HVMQ catheterising or ask her to simulate the tasks of catheterisation or bowel washouts. She states that her observation was that HVMQ had difficulty maintaining eye contact and that her observation and the report of Ms Bailey would be consistent with her experience that a child with HVMQ’s medical condition would have difficulties in social development and high levels of anxiety. Ms Petrovska was of the view that HVMQ would require additional supports but deferred to the continence nurse for an opinion about how long the supports would be required.
Ms Petrovska stated that in her opinion HVMQ’s impairment in toileting would impact on HVMQ’s self-care and personal care. It also impacts on her ability to maintain hygiene. Ms Petrovska was of the view that toileting is a facet of self-care, hygiene and health. Ms Petrovska stated that the report of the continence nurse also indicates that HVMQ’s toileting difficulties impact on her health. Ms Petrovska’s opinion was that HVMQ’s toileting and need for assistance with her hygiene impact on her independence and her self-care. Ms Petrovska stated that if a person cannot toilet it impacts on the way that they can care for themselves. She also gave the opinion that an inability to toilet would have a greater impact on a person’s ability to self-care than an inability to dress.
Ms Petrovska was of the view that if HVMQ does not receive support from the continence nurse and a psychologist her health will be affected and will deteriorate. She noted that this conclusion is predicated on accepting the evidence of the continence nurse and psychologist.
Ms Petrovska gave the opinion that if HVMQ’s condition is not managed properly to allow her to gain independence this can affect her mental health, her ability to move through puberty, to operate socially, to form relationships and to make friends and move into adulthood with some confidence. Ms Petrovska was of the view that the supports requested are early intervention as they would be intervening early with treatment to assist HVMQ’s development. She was of the view that HVMQ’s functional capacity will improve and she will not deteriorate with the supports the continence nurse and psychologist have recommended.[23]
[23] Transcript Day 1, 63, lines 7-25.
Evidence of Ms Jamila Bailey, Paediatric Clinical Psychologist
Ms Bailey advised in a report dated 21 December 2022 that HVMQ requires psychology and continence nursing and education funded by the NDIS.[24]
[24] Exhibit 1, 217.
Ms Bailey provided a report dated 11 September 2023. This report says that the effects of HVMQ’s disability are physical, social and emotional, and that she has experienced behavioural and emotional changes. On the Achenbach Child Behaviour Checklist, Ms HVMQ and the school rated HVMQ’s problems to be in the clinical range. Ms Bailey was of the opinion that under the Diagnostic and Statistical Manual 5th Edition (DSM-V-TR), HVMQ meets the diagnostic criteria for an adjustment disorder with mixed disturbance of emotions and conduct. She recommends support from the school, plus community psychological support by a mental health plan from her GP.[25]
[25] Ibid 213.
Ms Bailey is a Year 5 Clinical Psychologist and is able to supervise other Clinical Psychologists. She works for HNEKids. Ms Bailey told the Tribunal that psychoeducation and health literacy is protective for the wellbeing of any patient. Research shows that it leads to preferable health outcomes, and that early intervention helps.
Ms Bailey stated that catheterisation has physical and emotional impacts. Aversion and distress is more often reported by young people and women. Ms Bailey stated that the provision of supports to HVMQ would help improve her skills and empower her, leading to reduced supports down the track. She stated that she anticipated poorer health outcomes physically and psychologically for HVMQ without the supports, including depression, social withdrawal and kidney failure.
Ms Bailey explained that under the DSM-V-TR, an adjustment disorder is a stress response syndrome to a clearly identifiable stressor. It is associated with suicidality and poorer outcomes. Ms Bailey explained that HVMQ would have been referred to her by the continence clinical nurse consultant (CNC) or staff specialist around the new requirement to self-catheterise. Ms Bailey explained that her service does not have the capacity to provide long-term care. They provide interim short-term care and then refer to the most appropriate supports. In this case, a multidisciplinary meeting determined that the NDIS was the most appropriate support in HVMQ’s case.
Ms Bailey stated that HVMQ had already had more sessions with her than she should have. They did not want to suddenly cease psychological support without other supports in place. She had recommended that Ms HVMQ get a mental health plan from HVMQ’s GP, but only as a ‘stop-gap’[26] measure because her access request to the NDIS was rejected. HVMQ requires a paediatric psychologist and there are very few who would accept such a referral. Ms Bailey stated that the primary focus of the therapy for HVMQ was self-catheterisation. HVMQ did not want to self-catheterise. Ms Bailey stated that HVMQ was anxious and disengaged and she spent time trying to develop a rapport with HVMQ before reducing the frequency of the sessions. Ms Bailey said that she used motivational interviewing and positive reinforcement and talking about the underlying issues such as pain and not knowing where to place the catheter. They also talked about her condition, bowel washouts, HVMQ’s embarrassment at soiling and needing to wear pads and the impact on her school attendance. Ms Bailey said that her clinical observation is that a lot of the anxiety is around catheterising, feeling different and having a chronic health condition.
[26] Transcript Day 2, 75, lines 10-12.
Ms Bailey explained that HVMQ had been linked in with the well-being hub at her school which is part medical and health, and part therapeutic support. Ms Bailey noted that HVMQ had been minimally verbal when pressed on these issues and it has been difficult to get an insight into her thoughts. In her opinion, this is why HVMQ’s adjustment disorder has changed to an adjustment disorder with mixed conduct disorder symptoms over time.
Ms Bailey noted that HVMQ had responded better to psychological treatment around the need for her MACE washouts and her improvements in this area have been sustained. This was achieved with a combination of education and psychology, but the same strategies have not been as successful with catheterisation because the frequency required is a significant barrier, especially to her catheterising at school.
Ms Bailey stated that HVMQ had been making steady gains with her catheterisation with reminders in her phone and that as she did the procedure more frequently she increased in confidence and had less pain because she was becoming better at it. This year HVMQ has demonstrated marked social withdrawal and reluctance to miss school for her medical and psychological appointments. Ms Bailey stated that she began to be concerned towards the end of Term 1 and the beginning of Term 2 this year. HVMQ began to be non-verbal and teary, to find it difficult to hear the education, and to have difficulties articulating why she would not catheterise. She became very shutdown and worried about the social impact of self-catheterising. Ms Bailey said that HVMQ is:
‘at an age now where she’s not wanting to be identified as having to – she’s the kid that has to go to a whole bunch of medical appointments, and people, particularly friends, start asking questions, and that can be a really difficult thing to navigate, particularly if you don’t want people knowing about your diagnosis.’[27]
[27] Transcript Day 2, 80, lines 18-22.
This was part of the reason for the break in HVMQ’s therapy. Ms Bailey stated that HVMQ has been more engaged and more verbal after returning to therapy. Ms Bailey explained that she is on secondment, substituting for another psychologist by the name of Wendy. Wendy will be taking over HVMQ’s care and they had a joint session a couple of weeks prior to the hearing. At that session, HVMQ was able to talk about how she was feeling and was reporting that she had not catheterised at all for some time. Ms Bailey was of the view that HVMQ requires long-term psychological support in her local environment that is outside school. She did not think that Telehealth was a viable option due to HVMQ’s inability to engage. She noted that ideally HVMQ would have before or after school appointments.
Ms Bailey noted that HVMQ also engages in restrictive eating and thinks she is overweight although she is not. She said that this is a long-standing issue. Ms Bailey explained that these thoughts can affect brain structure and lead to body dysmorphia. It is a particularly difficult time for HVMQ as she is going through puberty and her hormones and body are changing. Ms Bailey noted that she had spoken to Stacey Jacobs at HVMQ’s school on several occasions and has also offered for herself or Ms Fenwick to go to the school. The school is asking about funded supports for this to occur. Ms Bailey said that Ms Jacobs had expressed concerns around HVMQ’s restrictive eating, not feeling good about herself, falling in with a less good peer group, falling grades, withdrawal, and a poor attitude.
Ms Bailey was of the view that psychological supports will be something that HVMQ would ‘tap in and out as needed across the life span’.[28] She said that the provision of intensive supports is early intervention around mastery and empowerment. The provision of early support would be with the hope that the frequency and intensity of psychological treatment in future will reduce.
[28] Transcript Day 2, 84, lines 34-35.
Ms Bailey stated that, if left untreated, HVMQ’s adjustment disorder is likely to worsen or become something else. Adjustment disorder is not necessarily a lifelong diagnosis, and it would be expected that as HVMQ matures and develops emotional maturity with intensive psychological support around catheterising, she would improve.
Ms Bailey agreed that Headspace would be available to HVMQ, but that it would also not be able to provide the long-term assistance that she requires. The Child and Adolescent Mental Health Service would only become involved if HVMQ was suicidal and then only for that period. Brighter Futures is not a relevant referral.
Evidence of Ms Sharon Fenwick, Continence CNC
Ms Fenwick has been a paediatric nurse for over 30 years. She explained that the reason HVMQ needs to perform clean intermittent catheterisation is to control kidney hydronephrosis. HVMQ only has one kidney, and she already has a degree of hydronephrosis. Ms Fenwick confirmed that HVMQ has a neurogenic bladder and bowel. They do not work correctly, and they will never be able to work correctly. If HVMQ does not empty her bladder completely, she experiences urine reflux, which causes kidney damage. Ms Fenwick said that this is a silent type of damage, and a person often will not know that they have it until they require dialysis or a transplant. Ms Fenwick explained that even if HVMQ does eventually have a kidney transplant she will still need to catheterise because it is her bladder that is the problem. Ms Fenwick confirmed that they had exhausted all other treatment options before recommending catheterisation.
Ms Fenwick said that ideally a person would have intensive continence support for the first 12 months. This would involve regular sessions with a continence nurse to make sure that HVMQ understands the procedure and can perform it. Ms Fenwick said that it is not easy to learn and takes a lot of support. In HVMQ’s case, her external genitalia does not look and behave the same as other girls because she has had an anoplasty, so it is even more difficult for her. Ms Fenwick said that the goal would be to have HVMQ performing self-catheterisation routinely and regularly while still being able to be a child. If she is non-compliant she will shorten her lifespan. HVMQ needs to be able to catheterise and maintain hygiene up to six times per day and at least four times per day. She also needs to be able to independently make and connect the fluid for her bowel washes, sit on the toilet and do all the necessary hygiene tasks.
Ms Fenwick said that in HVMQ’s case the sooner she can transition from the MACE to the TAD, the better. Ms Fenwick explained that the MACE creates an artificial hole in HVMQ’s stomach. It leaks, is uncomfortable, embarrassing and HVMQ cannot control what comes out of it. It is smelly even with the dressing. Ms Fenwick stated that HVMQ needs funding to have the TAD and catheters, and also to have support and training. She said that for the first couple of years HVMQ should have regular continence assessments to make sure that everything is working properly, and ongoing funding is supported, but that in the long-term such assessments would not need to be so regular.
Ms Fenwick said that the procedures HVMQ has to perform take a great deal of time and equipment and affect her function. She stated that it affects HVMQ’s activities of daily living, health, self-care, participation and social inclusion. She confirmed that it is the opinion of the multidisciplinary team at HNEKids that HVMQ requires support from the NDIS.
Ms Fenwick explained that although HVMQ is able to access part of her equipment through Enable NSW, it is not enough. The normal allocation is 200 catheters plus a small amount of CAPS funding. This is not nearly enough to meet HVMQ’s needs and the NDIS ‘should come to the party’.[29] Ms Fenwick stated that if a person is found to be qualified for the NDIS, Enable NSW encourages them to be funded by the NDIS.
[29] Transcript Day 2, 92, lines 45-46.
Ms Fenwick stated that she first saw HVMQ on 4 May 2022, but HVMQ has had the condition since birth. She said that she has seen HVMQ quite a lot and has also done a home visit. She explained that HVMQ will be seen by HNEKids until she is 18 years of age but that they are a tertiary referral service. Their view is that HVMQ should be managed day-to-day in the community through the NDIS. HVMQ is unable to receive the intensive supports that she requires through HNEKids. Ms Fenwick said that they do not make a recommendation that a child seek funding through the NDIS lightly and it is of no benefit to their service to do so. Ms Fenwick explained that such a recommendation is made by a multidisciplinary team which takes into account every domain of the child’s development.
Ms Fenwick told the Tribunal that in her view HVMQ probably came to them late and that was a failing of the health system. It is hard to get a 13-year-old girl to catheterise. It even takes a lot of time to teach an adult how to perform the procedure correctly. The ability to get HVMQ to do so is affected by her understanding, willingness, age and cognitive function. She explained that in her professional experience if they know that a child will require to catheterise at the age of two, they would be independent in doing so by the age of seven or eight. HVMQ has already passed that age where she would be compliant with the procedure.
Ms Fenwick stated that if they think the child is going to need catheterisation they start the training and familiarisation early. In her experience, after the age of five, a person needs intensive support and psychological support to be able to catheterise and be compliant. In HVMQ’s case, it was initially thought that they had surgically repaired her issue, but it was only after she had multiple hospital admissions for urinary tract infections that scans showed the hydronephrosis and they realised that she would need to catheterise. She noted that their records show that HVMQ has had 89 outpatient appointments and 23 hospital admissions for manual evacuations or urinary tract infections, which she described as ‘huge in somebody that’s 13 years of age’.[30] The day before Ms Fenwick gave evidence, HVMQ had presented at the emergency department with a urinary tract infection, a known consequence of neurogenic bladder. Ms Fenwick was of the view that if HVMQ had started catheterising earlier, she would have been independent by now and would have adjusted better to the procedure. She acknowledged that she does see non-compliance with teenage patients even when they have been self-catheterising since they were young.
[30] Transcript Day 2, 102, line 43.
Ms Fenwick said that, ideally, she would do at least five home visits with a child who was learning to catheterise as it requires lots of steps, troubleshooting and creating a muscle memory. She does not have the resources to enable her to do so. She explained that she has 600 patients and HVMQ is only one of them.
Ms Fenwick confirmed that the clean intermittent catheterisation guidelines which appear in the Tribunal documents are correct, but that she also did an individual procedure for HVMQ which has all of that information plus additional information which is unique to HVMQ. She noted that the consequences of non-compliance with the catheterisation regime or not catheterising at all are the same - kidney damage. Ms Fenwick’s opinion was that HVMQ’s current regime of catheterising three times a day is insufficient.
Ms Fenwick confirmed that HVMQ also uses pads and pullups and experiences skin breakdown and bowel leaks. She was of the view that providing support now and giving HVMQ the tools that she needs to become independent in catheterising would assist her to quickly become independent in the procedure.
Ms Fenwick confirmed that each consultation with a continence nurse would be up to one hour. It is not possible to repeatedly attempt self-catheterising in a single session, so it is broken up with videos and resources. Three hours of consultations are required to help build the therapeutic relationship and explain the procedure before they can even attempt to start the process of teaching self-catheterisation. She stated that she had already spent between 10 and 12 hours with HVMQ, but she is not yet independent. Ms Fenwick was of the view that HVMQ would still require regular help and psychological support to be able to become independent. Ms Fenwick stated that she has also taught Ms HVMQ how to perform the procedure and that it is important to teach other family members for support. In addition, the continence nurse should also be able to attend HVMQ’s school to assist her to become confident in performing the procedure at school, probably in conjunction with an occupational therapist. Ms Fenwick explained that the plan had been for her to attend HVMQ’s school this term, but that HVMQ had to get her catheterisation routine in place first, which she had been unable to do.
Ms Fenwick stated that HVMQ is currently using a ‘LoFric’ catheter. Incorrect catheterisation can cause micro tears and strictures which create problems in the future. They decide what type of catheter to use by having a trial and prescribing the one that works best. ‘LoFric’ is the brand that is currently available through Enable NSW. The type and size of catheter that is prescribed varies according to a person’s life stage and Ms Fenwick noted that HVMQ is almost ready to transition to a larger size. This type of catheter is a non-standard catheter which means that Enable NSW will only provide 200 per year, although HVMQ would require 2,200 to catheterise as frequently as she is meant to. To be able to get any funding through Enable NSW, HNEKids must provide diagnosis, recommendations and supporting evidence which is then assessed by a continence nurse at Enable NSW. They may then ask for further evidence. Ms Fenwick stated that she always recommends the highest number of catheters which will be provided, being 600. Enable NSW also fund rectal catheters, but not enough to meet HVMQ’s needs, as the standard allocation is 24 rectal catheters per year. Ms Fenwick stated that there are no other funding sources available to HVMQ other than those that are only for temporary conditions or those that require a co-payment.
Ms Fenwick confirmed that HVMQ is not eligible for the NSW stoma program as she does not have a stoma, her MACE is not for collection for faeces or urine.
In relation to HVMQ’s bowel, Ms Fenwick said that prior to the MACE, HVMQ was having a manual evacuation every eight weeks or so. She has still required infrequent manual evacuations since getting the MACE. Ms Fenwick stated that the MACE in HVMQ’s stomach leaks and smells and is visible to everyone. She stated that in her view it is not a good option for a child in general. She thought that if HVMQ had presented to them earlier they would have tried trans-anal irrigation first. This is what the TAD does. Enable NSW may fund part of the cost of a TAD, but not the whole cost. HVMQ cannot rely on manual disimpaction and her bladder, bowel and kidney are all affected if her bowel is backed up. It also affects her health generally as she is not getting rid of her waste products. Ms Fenwick stated that if they are able to trial a TAD, and it is effective, they can then close HVMQ’s MACE. Ms Fenwick stated that as bowel washouts through the MACE are effective for HVMQ, they are confident that the TAD will also be effective. She stated that it would be unusual if it did not work. A usual trial period would be 1 to 2 months. The cost of closing the MACE would be covered by the health system.
Ms Fenwick stated that HVMQ would require ‘short-term support’[31] by a continence nurse on an intensive basis for her to be confident in using the TAD, but, like catheterising, the goal would be for her to become independent, including in mixing her solution. Ms Fenwick stated that ongoing psychological support is important as it is not possible to separate motivation and compliance from the performance of the procedure. Ms Fenwick stated that in her view HVMQ was more likely to be compliant in using the TAD as it would not be associated with smell, leakage, skin breakdown on her perineum and stomach, nor would there be less risk of prolapse.
[31] Transcript Day 2, 129, line 36.
Ms Fenwick estimated that HVMQ would require at least 50 hours of education including three hours initially on trans-anal irrigation and then one hour at least three times per week for the first month, reducing over time. Ms Fenwick noted that the usual recommendation from practitioners is 100 hours of education and support. Ms Fenwick said that she would expect that future funding would be limited to catheters and devices, plus some funding for an occasional continence assessment and troubleshooting. The education component is intensive for a relatively short period. She stated that HVMQ will always require support, but the support levels will look different. This support may be much more intensive to begin with and then reduce to a constant level, looking more like funding equipment. Ms Fenwick said, that in her view, without support HVMQ will not increase the frequency of her catheterisations which will result in kidney damage. In her view, intensive supports would increase HVMQ’s functional capacity to manage her condition herself and lessen her need for future supports.
Ms Fenwick explained that HVMQ’s MACE should be replaced every 12 months, but it will not be replaced by the health system unless it is no longer functioning, or Ms HVMQ pays the cost. The health system will continue to provide HVMQ with reviews every six months or year, urodynamics studies annually, and bowel function tests in conjunction with the surgeons. It has also provided initial training with the expectation that somebody else would do the day-to-day management as the support available through the health system is only short-term.
CONSIDERATION
The first matter in dispute is whether HVMQ has a substantially reduced functional capacity in any of the functional domains. The Agency’s Operational Guidelines say that an impairment substantially reduces a person’s functional capacity if they usually need disability-specific supports to participate in or complete tasks in the relevant functional domains. This includes a high level of support from other people, such as physical assistance, guidance, supervision or prompting; or assistive technology, equipment or home modifications.[32]
[32] National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) <>
It is common ground that HVMQ does need guidance, supervision and prompting from another person to undertake the activities of self-catheterisation and bowel washouts. She also requires specific equipment being urinary catheters, solutions for her bowel washouts, equipment to contain the washout solution and connect the bag to her existing MACE and/ or a TAD with rectal catheters and equipment. The consumables associated with maintaining a hygienic environment in which to perform these procedures are also necessary.
The Agency’s position is that overall, taking account of these requirements, HVMQ does not have a substantially reduced functional capacity in any domain, including self-care, as toileting is only one of the activities associated with self-care. The Agency argues that this functional domain is a composite of a number of activities including personal care, hygiene, grooming, eating and drinking, and health. This position is that HVMQ’s inability to complete the activities of toileting without equipment and supervision does not amount to a substantially reduced functional capacity in the domain of self-care.
HVMQ’s position is that HVMQ’s inability to complete the activities of toileting without equipment and supervision impacts not only on her personal care, but her hygiene and health. HVMQ argues that an inability to toilet without assistance is a significant component of self-care, which has a greater functional impact on HVMQ than if she was unable to complete any of the other activities of self-care. HVMQ argues that this inability amounts to a substantial functional impairment in the domain of self-care.
The evidence before the Tribunal indicates that HVMQ is not yet independent in the activities of self-catheterisation and bowel washouts, but that with additional training and support she can become so. This would mean that she would no longer require the prompting, supervision and assistance of another person to complete the activity, although her requirements for equipment and consumables would remain. Ultimately, additional supports are expected to result in an improvement in HVMQ’s functional capacity through increased compliance with the regime of self-catheterisation and bowel washouts, therefore reducing her potential for damage to her one kidney and the need for manual bowel disimpaction.
The Tribunal considered HVMQ’s impairments in each of the functional domains.
Communication
The evidence before the Tribunal indicates that HVMQ has some difficulties communicating her needs and feelings, but has no impediment to her ability to speak or write. The Operational Guidelines set out what communication is for the purpose of the NDIS Act:[33]
• Communicating – how you speak, write, or use sign language and gestures, to express yourself compared to other people your age. We also look at how well you understand people, and how others understand you.
[33] National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) <>
If a person is able to do all these things, it is unlikely that they have a substantial functional impairment in communication.[34] The Tribunal is satisfied that HVMQ’s disability does not cause her to experience an impairment in her ability to communicate. The Tribunal cannot conclude that HVMQ has a substantial functional impairment in the domain of communication. The requirements of subsection 24(1)(c)(i) of the NDIS Act are not satisfied.
[34] HPSC and National Disability Insurance Agency [2021] AATA 727 [50].
Social interaction
Ms HVMQ has indicated that that HVMQ’s social interaction is impaired by her need to self-catheterise and her unwillingness to disclose her condition to her peers. Ms HVMQ’s evidence is also that HVMQ can behave appropriately in social situations.
The Operational Guidelines focus on whether or not a person has the skills to engage in social interaction and how they behave when they do so, rather than any opportunity for social interaction which may be present in their lives, or any barriers which may make accessing social interaction more difficult for the person.[35]
[35] National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) <>
In Kilgallin,[36] the Tribunal was faced with the circumstances of an Applicant who had significantly reduced their social interactions as a result of their disability. In that case, the Tribunal found that the Applicant may well have reduced psychosocial functioning in undertaking such activities, but the skills required for social interaction were not significantly affected. The Tribunal is satisfied that HVMQ’s situation is substantially similar. It could not find that HVMQ has a significantly reduced functional capacity in the functional domain of social interaction outlined in subsection 24(1)(c)(ii) of the NDIS Act.
[36] Kilgallin and National Disability Insurance Agency (General) [2017] AATA 186 (‘Kilgallin’).
Learning
The evidence before the Tribunal is that HVMQ’s schooling has been affected by the absences caused by her disability, but she has no impairment in her ability to learn. The Tribunal could not find that HVMQ has a significantly reduced functional capacity in the functional domain of learning outlined in subsection 24(1)(c)(iii) of the NDIS Act.
Mobility
The evidence before the Tribunal is that HVMQ has no impairment in the domain of mobility, other than on those occasions when she has a urinary tract infection, causing her thigh pain, and making her unwilling to walk. The Tribunal could not find that HVMQ has a significantly reduced functional capacity in the functional domain of mobility as outlined in subsection 24(1)(c)(iv) of the NDIS Act.
Self-Management
There is no evidence before the Tribunal to indicate that HVMQ has a significant functional impairment in the domain of self-management, although it does note that there is evidence that she is making some poor choices. Ms HVMQ conceded that HVMQ is probably managing her life as well as any other 13-year-old girl. There is no indication that she is experiencing any form of cognitive impairment, although her diagnosed adjustment disorder does appear to be having an impact on her decision-making. The Tribunal could not find that HVMQ has a significantly reduced functional capacity in the functional domain of self-management outlined in subsection 24(1)(c)(vi) of the NDIS Act.
Self-Care
HVMQ’s functional capacity in the domain of self-care is the one which is specifically in dispute in this matter. The Applicant argues that she does have a significant functional impairment in this domain. The Respondent argues that although HVMQ has specific impairments in the activity of toileting, this is not sufficient to amount to a significant functional impairment in the domain of self-care as HVMQ is independent in the other activities which make up this domain, being hygiene, grooming, eating and drinking, and health. The parties take differing views on the meaning of the court’s decision in Foster.[37]
[37] National Disability Insurance Agency v Foster [2023] FCAFC 11 (‘Foster’).
The evidence before the Tribunal is that HVMQ is unable to complete the activities of toileting without specific equipment. At present, she is also unable to complete this activity without guidance, prompting, and assistance from another person. She also requires some assistance in the activity of hygiene, as she is unaware when she is smelly and needs to change her pants due to faecal soiling, her dressing due to leakage from the MACE, or have a shower. If she has skin breakdown on her perineum from the faecal soiling, she is unable to apply the prescribed creams without assistance. HVMQ is able to complete grooming activities independently, with the same amount of prompting generally required by teenagers. She is displaying restrictive food practices and needs to be encouraged to eat and drink. She is also making poor choices around the frequency of her self-catheterisation and this is causing conflict between her and Ms HVMQ, and verifiable health impacts in the form of hydronephrosis, which can be seen on scans of her kidney.
The Tribunal does not accept the Respondent’s position that HVMQ’s impairments are only in the area of toileting. While she has a significant impairment in the activity of toileting, she also has impairments in the areas of hygiene, eating and drinking, and health. These are as a consequence of her impairment of VACTERL association, although some of them relate to her consequent psychosocial impairment rather than her primary disability.
The Tribunal considered the Respondent’s position that HVMQ is not seeking entry to the NDIS on the basis of her psychosocial impairment, and that as a consequence, her adjustment disorder cannot be considered for access to the NDIS. The Tribunal acknowledges that HVMQ’s impairments in eating and drinking likely stem from her psychological impairment rather than from her physical impairment. Her health impairments may also be attributable to the same cause, as she is not catheterising as frequently as she needs to, in part because of her feelings around her impairment.
There is clear evidence before the Tribunal, from Ms Bailey, that HVMQ’s adjustment disorder is a direct consequence of her VACTERL association and her need for catheterisation and bowel washouts. Ms Fenwick’s evidence was that HVMQ requires regular psychological support in order to become independent in the activities of catheterisation and bowel washouts, as it is not possible to separate the motivation and compliance with the physical regime required from the performance of the procedures themselves.
The Tribunal came to the conclusion that there are in fact two distinct impairments at play here. The first is the physical impairment caused by the VACTERL association. The second is the consequent psychological impairment. The VACTERL association is a permanent physical impairment which will not improve, although HVMQ’s management of it may result in improvement. The consequent psychological impairment is amenable to further psychological treatment and support and may not be permanent. The Applicant has conflated these two impairments as being a single impairment, whereas the Respondent has separated them. The Tribunal agrees that the approach of the Respondent is correct in law. The permanent impairment which can be considered for access to the NDIS is the VACTERL association alone, not the associated non-compliance and restrictive food practices, which are caused by other factors.
The VACTERL association causes significant functional impairment in the activity of toileting, and a moderate functional impairment in the activity of hygiene. It may also cause intermittent impairment in health due to hydronephrosis. Other tasks which make up the activity of self-care are unaffected.
HVMQ’s psychological issues are causing impairments in the areas of eating and drinking and health, due to non-compliance with the required regime. The Tribunal agrees that overall it could be considered that at this time, HVMQ has a substantial functional impairment in the domain of self-care, as she is impaired in the areas of toileting, hygiene, eating and drinking and health. It could not agree that this level of impairment is permanent. The only permanent impairments are those related to the activity of toileting, and the health impact of hydronephrosis. The impairment in the area of hygiene is likely to improve as HVMQ becomes more mature, but some part of it may be permanent.
As stated in Foster, section 24(1)(c) of the NDIS Act requires an assessment of the ‘bundle of tasks and actions forming the concept of “self-care”’.[38] The Tribunal does accept Ms Petrovska’s evidence that an impairment in the activity of toileting has a greater impact on a person’s ability to self-care and impairments in other activities that make up the domain of self-care. Nonetheless, it is not satisfied that a substantial functional impairment in this activity alone, coupled with some impairment in the activities of hygiene and health, is sufficient to establish a substantial functional impairment in the entire domain of self-care.
[38] National Disability Insurance Agency v Foster [2023] FCAFC 11 [65] (‘Foster’).
The Tribunal considered whether the deeming provision contained in rule 5.8 of the NDIS Access Rules is of assistance to HVMQ. The Tribunal decided that it does not, as HVMQ requires equipment and assistance to participate in the task of toileting, not the activity of self-care. The requirement for equipment and assistance in relation to a single task, even if that task is considered to have greater ‘weight’ in the bundle of tasks which make up the activity, is insufficient to meet the requirements of rule 5.8.
The Tribunal could not find that HVMQ has a significantly impaired functional capacity in the domain of self-care as outlined in subsection 24(1)(c)(v) of the NDIS Act.
The Tribunal was therefore unable to find that HVMQ has a significant functional impairment in any of the activities set out in s 24(1)(c) of the NDIS Act. The decision that HVMQ does not meet the disability criteria for access to the NDIS is correct.
Section 25 – Early Intervention Requirements
Section 25 of the NDIS Act sets out the requirements for access to the NDIS under the early intervention criteria. On behalf of HVMQ, Ms Ghecham argued that if it was found that HVMQ does not meet the disability requirements for access to the NDIS, she does meet the early intervention requirements.
The Tribunal has found that HVMQ’s VACTERL association is a permanent condition and her psychological impairment is amenable to psychological treatment and support. While HVMQ’s condition of VACTERL association has been present since birth, it was not until May 2022 that it became apparent that it could not be managed surgically. It needed to be managed by altering HVMQ’s activities of daily living to include self-catheterisation. This was a significant change in management and a new requirement. HVMQ’s needs changed a great deal. The likely trajectory of HVMQ’s disability if HVMQ continues on her current course of catheterising less frequently than is required is permanent kidney damage, and perhaps the need for dialysis or transplant. The provision of appropriate supports to increase the frequency of catheterisation, and to change the management of her bowel washouts to trans-anal irrigation is expected to ameliorate the probability of kidney damage and also deal with the negative consequences of the MACE, which include skin breakdown, leakage, odour, hygiene issues and prolapse.
The evidence before the Tribunal from Ms Bailey is that the provision of appropriate supports to assist HVMQ in the management and resolution of the adjustment disorder, which has arisen consequent to her physical disability, is likely to change the trajectory of HVMQ’s psychological condition. Her psychological diagnosis need not be permanent and need not transition into another disorder, such as depression. If intensive supports are not provided, it is more likely to do so, therefore increasing HVMQ’s need for future psychological supports. The evidence from Ms Fenwick is that the psychological aspects of motivation and compliance to perform the physical acts of self-catheterisation and bowel washouts cannot be separated from the performance of the procedures themselves. The Tribunal is satisfied that intensive psychological support is also required by HVMQ as a consequence of her VACTERL association.
The Tribunal finds that the provision of these supports can only improve the trajectory of HVMQ’s disability.
The evidence before the Tribunal from Ms Petrovska, Ms Fenwick and Ms Bailey is that HVMQ requires intensive supports for a period of time to enable her to become independent in the activities of self-catheterisation and bowel washouts. This includes intensive support from a continence nurse, psychologist and perhaps an occupational therapist, in addition to her requirements for equipment and consumables. After this initial period, the support required is expected to substantially reduce to include equipment and consumables, plus a contingency for occasional review or troubleshooting with a continence nurse.
The Respondent has argued that as HVMQ’s condition has been present from birth, it cannot meet the requirements for access to the NDIS through the early intervention pathway. The Tribunal disagrees. The Tribunal is satisfied that the changed management of HVMQ’s condition, and the increased demands on her to manage that condition herself by catheterising up to six times per day, means that the early intervention pathway is available to HVMQ. The Respondent referred the Tribunal to the Operational Guidelines which provides:
'To help us decide if the early intervention will help you in these ways, we look at:
• how your impairment might change over time
• how long you’ve had your impairment
• if there’s been a significant change to your impairment
• if your needs are likely to change soon, such as if you’re finishing school….’.[39]
[39] Respondent’s Closing Submissions at [65].
The Tribunal finds that HVMQ’s needs have changed, although her condition is long-standing.
The Respondent also referred the Tribunal to rule 6.9, in particular the provisions in relation to likely trajectory and impact of a person’s impairment over time; and the need to consider the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity and in reducing their future needs for support.[40] The Respondent argued that the future trajectory of HVMQ’s condition is no change, as she will always be unable to empty her bladder and bowel without equipment. The Tribunal disagrees, as there are clearly likely health consequences of HVMQ continuing to fail to do so in the prescribed manner, which will worsen her level of disability. There are also impacts from her continued use of the MACE, and she has already required surgery for a prolapse.
[40] Respondent’s Closing Submissions at [66].
Rule 2.5(b) of the NDIS Access Rules includes the following passage about the rationale for the early intervention requirements as an alternative to accessing the NDIS through the disability requirements:
‘A person can access the NDIS through the early intervention requirements without having substantially reduced functional capacity. Instead, the early intervention requirements consider the likely trajectory and impact of a person’s impairment over time and the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity’.
The Respondent argued that the evidence of Ms Bailey and Ms Fenwick can only be considered in relation to HVMQ’s overall health, not her disability, and therefore the required link for qualification under the early intervention criteria is missing. The Tribunal disagrees. HVMQ’s disability from VACTERL association includes hydronephrosis, due to urine passing back up from her bladder into her kidney. This is worsened if HVMQ fails to catheterise as frequently as she needs to. Continued hydronephrosis leads to kidney failure. HVMQ’s failure to catheterise is coming from the psychosocial impairment consequent upon her VACTERL association and its management. The Tribunal is satisfied that HVMQ’s functional impairments all relate to her disability.
The Tribunal finds that HVMQ meets the requirements set out in subsection 25(1)(a) of the NDIS Act, in that she has a permanent physical impairment in VACTERL association and its attendant impairments of an inability to void her bladder and bowel without the use of equipment; and hydronephrosis. She also has a psychosocial impairment as a consequence of her physical impairment, which may be permanent if additional appropriate supports, in the form of psychology, are not provided.
The Tribunal is satisfied that the provision of early intervention supports for HVMQ is likely to benefit HVMQ by reducing her future needs for support in relation to a disability. These include a reduced requirement for ongoing education and monitoring by a continence nurse and psychological support. It also may include dialysis or kidney transplant. Subsection 25(1)(b) of the NDIS Act is satisfied.
The evidence before the Tribunal is that the provision of such supports is likely to improve HVMQ’s functional capacity. It is anticipated that she will become independent in the activities of catheterisation and bowel washouts and also increase her frequency of catheterising, so as to ameliorate the health impacts on her kidney. Subsection 25(1)(c) of the NDIS Act is satisfied.
A person does not meet the early intervention criteria if the support is most appropriately funded or provided through other general systems of service delivery or support services, including the health system. The Tribunal carefully considered the supports available to HVMQ in learning to manage her disability. She certainly does have considerable support through HNEKids, including annual review with a continence nurse, bowel function tests, and some degree of psychological support. She is also able to receive some supports in the form of catheters from Enable NSW and a small amount of CAPS funding. Ms HVMQ was in the process of seeking a mental health plan from HVMQ’s GP, although the evidence of Ms Bailey was that this will also be insufficient to meet HVMQ’s needs.
The Tribunal acknowledges that the supports available to HVMQ through other systems are generally insufficient to meet her needs. The fact that she has access to inadequate support through these mechanisms does not mean that the NDIS must fill that gap. In Young,[41] the Tribunal noted:
‘Whether or not funding is available through other general systems is not the test of whether it is most appropriately funded or provided through the NDIS. The fact that the health system does not fund entirely, or even at all, what is essentially clinical treatment, or some other form of support that is more appropriately funded through the health system, does not make it the responsibility of the NDIS’.
[41] Young and National Disability Insurance Agency [2014] AATA 401 [41] (‘Young’).
The Tribunal is satisfied that the majority of the supports required by HVMQ are not clinical treatment. They are for the day-to-day management of her condition so that she can perform the activities of daily living, and to support her increased functional capacity for self-care and ultimately independence in this functional domain. Although she will continue to need equipment for the rest of her life, she will not require the intensive education and support from a continence nurse nor psychological therapy on an ongoing basis. The health system will continue to provide her clinical treatment. The Tribunal finds that HVMQ requires supports for the purpose of performing the activities of daily living. This is avowedly the purpose of the NDIS.
The NDIS website states that the NDIS is responsible for supports that help a person go about their daily life and are related to their disability. It states that the NDIS funds supports that are related to things that a person can and cannot do due to a disability.[42] This includes personal care supports, help to learn how to manage an individual’s personal care, and regular therapy that is directly related to the things that a person can and cannot do because of their disability. This is exactly what HVMQ requires.
[42] National Disability Insurance Agency, Our Guidelines: Applying to the NDIS, (Web Page) <>
The Tribunal finds that HVMQ’s impairments satisfy section 25(3) of the NDIS Act. The required supports are not best provided by another system. They fall squarely within the purview of the NDIS. The Tribunal finds that HVMQ fulfils the early intervention requirements to enable her to become a participant of the NDIS.
CONCLUSION
The Tribunal is satisfied that HVMQ meets the early intervention criteria for access to the NDIS. The Agency’s decision on internal review dated 2 December 2022 is incorrect.
DECISION
The Tribunal sets aside the decision under review and remits the matter for reconsideration, with a direction that HVMQ meets the early intervention requirements for access to the National Disability Insurance Scheme as set out in section 25 of the National Disability Insurance Scheme Act 2013 (Cth).
I certify that the preceding 136 (one hundred and thirty-six) paragraphs are a true copy of the reasons for the decision herein of Member T Bubutievski
.............................[SGD]...........................................
Associate
Dated: 29 January 2024
Date(s) of hearing:
Date of final submissions:
26 and 27 October 2023
11 December 2023
Solicitor for the Applicant: S. Ghecham, Legal Aid NSW Solicitor for the Respondent: S. Quang, HWL Ebsworth Lawyers
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Most Recent CitationOczenaschek and National Disability Insurance Agency [2024] AATA 2889
Cases Cited6
Statutory Material Cited0
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