FFNR and National Disability Insurance Agency

[2021] AATA 3890

FFNR and National Disability Insurance Agency [2021] AATA 3890 (21 October 2021)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Number:          2020/3289

Re:FFNR

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

DECISION

Tribunal:Deputy President B W Rayment OAM QC

Date:21 October 2021

Place:Sydney

The reviewable decision is set aside, and the matter remitted to the respondent with the direction that the support of the services of a Level 3 support worker for 24 hours a day to assist the registered nurse is a reasonable and necessary support. 

.............................SGD...........................................

Deputy President B W Rayment OAM QC

CATCHWORDS

NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – support worker for additional 11 hours a day seven days per week – whether support requested is mere preference – funding of support to take in account what is reasonable for families to bear – decision set aside and remitted

LEGISLATION

National Disability Insurance Scheme Act 2013 (Cth)

REASONS FOR DECISION

Deputy President B W Rayment OAM QC

21 October 2021

1. The applicant is a boy aged 9 years currently a participant in the National Disability Insurance Scheme.  As a result of a tragic near-drowning event in a swimming pool, he now suffers from the following conditions:

   ·Severe hypoxic brain injury secondary to accidental immersion;

   ·Cerebral palsy, profound visual score – GMFCS V;

   ·Spastic quadriparesis/flaccid paraparesis;

   ·Grade 3 subglottic stenosis-tracheostomy dependent, 4.5 cuffed tube;

   ·Epilepsy; and

   ·Gastro-jeunostomy[1].

   [1] T-Documents, T25, pg 25.

2. The applicant has funding for 24 hour support from a registered nurse and the assistance of a Level 3 support worker for 13 hours a day seven days per week.  The application is for the support worker to be provided 24 hours a day, to assist the registered nurse.

3. The respondent offers to provide an extra 3 hours per day of the services of the Level 3 support worker, and submits that 16 hours a day of the support worker and 24 hour support from a registered nurse is the upper limit of what is reasonable and necessary in the circumstances. The respondent says that the times at which the 16 hours are to be spent may be worked out according to what is convenient to the applicant, that is, in practice to be worked out by the applicant’s parents.

4. The child’s mother is herself a registered nurse who does not work.  She is the mother of the applicant and his two elder brothers.  The mother and father live at home with their three children. The applicant’s mother will need surgery for a back problem she has, and to recuperate afterwards. The surgery has been deferred for the time being, probably as a result of the COVID emergency, and possibly as a result of the present dispute as well.

5. Her husband is a medical practitioner in full time employment. 

6. The mother has interrupted sleep because of care she provides for the applicant during night hours, since the nurse needs regular assistance at night time, and the carer has gone home.

7. The applicant’s mother is usually exhausted as a result.

8. A view which the applicant’s mother and her husband assert, that circumstances require additional help at night time, is far from disputed in the oral evidence called by the respondent.

9. A witness called by the respondent, a registered nurse, Ms KB, noted her observation that the mother is awake all night and says she only sleeps during daylight hours for 2-3 hours when the (elder) children are at school.  By day, she stated that the mother is in the room with the applicant nearly all the time, issuing instructions to the nurses.  By the nurses, she means the registered nurse and the Level 3 support worker.

10. Ms KB expressed the opinion that there is no need for instructions to be given to them by the mother because they have been well trained and are competent.  This is an observation not made by other witnesses who were also in a position to observe the mother’s activities during the day.  For example, an occupational therapist who was qualified by the respondent, and whose oral evidence the respondent chose not to rely upon, unlike Ms KB, fully supported the applicant’s present claim, as did a number of other witnesses, including the applicant’s father and an occupational therapist qualified and called by the applicant.

11. The applicant’s mother is the only registered nurse called in the applicant’s case. She is, like her husband, medically qualified, and since the tragic accident of their youngest son, contributes very substantially to the care of the applicant.

12. Importantly under the heading “Reasons for Concern” Ms KB said that she has concerns that the mother has no down time.  She described the mother as obsessive about the applicant and every aspect of his care. Under the heading “Recommendations” she said that the mother needs some time for personal/self-care. She recommended that the times at which the carer works should be rearranged so that care hours can be used for work in the night to support the registered nurse and encourage the mother to go to bed.

13. That view involves that the Level 3 support worker on duty during daytime hours would, by contrast with the present situation, be absent for some number of hours during the day, so that the mother can have better sleep at night time, and assist the registered nurse as required during those hours of the day when the carer is not there.

14. I heard from the father of the child who said that his wife plays a major role in the care of the applicant and he also plays a role to some extent.  He described a typical night’s sleep for his wife and him, where the alarm goes off almost every hour, because the nurse needs help. He said that he also wakes up and is fatigued during his working day.  If there were a night-time carer, ready to assist the nurse as required, both of the applicant’s parents would benefit.

15. The father said that at the present time most of the night his wife needs to be with the carer (nurse) to assist with the applicant’s care.  That evidence was not the subject of cross-examination by the respondent.

16. The contest between the parties at an evidentiary level is that the applicant’s parents seek the services of a carer as an assistant to the registered nurse 24 hours a day, both day and night.  On the other hand, Ms KB’s recommendation would change the hours at which the carer would work, having the carer work at night so that the mother can sleep then.  It is obviously implicit in that proposal that the carer would work less hours by day, and during the hours at night when the mother sleeps. Of course, both the registered nurse and the level 3 support worker work shifts in alternation with others having the same qualifications.

17. The applicant’s mother has two elder children, and effectively runs the household by day especially when her husband is not there.  She also is a registered nurse, and has a very seriously disabled and ill child.  I have no doubt that she is extremely concerned on his behalf, and that is simply one of the circumstances of the case.  Whether the nurse’s observation that she is “obsessive” is correct is not something which the evidence establishes to my satisfaction.  Her own professional background and natural maternal affection would no doubt make her extremely concerned to ensure he is well looked-after. 

18. Far from demonstrating any impatience with the registered nurse and carer, the applicant’s mother made a number of statements which indicate that she is concerned for their welfare and she did not comment adversely on their competence or suggest that they be changed.  Neither the registered nurse nor the support worker gave evidence before the Tribunal.  The reason why the parents need other assistance at night time, which mainly relates to the mother’s need for what Ms KB described as “down time” is effectively not in dispute having regard to the matters to which I have already referred.

19. The suggestion of Ms KB that the carer be absent for some hours during the day but present at night seems to me to concede at least one aspect of the claim under consideration and to raise the question whether there is a need for a carer during the daytime hours.

20. There was also a high degree of agreement between the occupational therapists qualified by both the applicant and the respondent.

21. The occupational therapist qualified by the respondent, Ms AG, dealt with the question whether two carers were required for all transfers and positioning in bed. She expressed the opinion that two carers were required for all such operations, and that such operations were required all day and all night. At page 15 of her report she expressed the view that regardless of any assistive technology additions, the task of caring for the applicant demanded the presence of two people to enable his care to be managed across the 24 hour period[2].  If that view is correct, the practical result in the circumstances is that a level 3 support worker in addition to the registered nurse over 24 hours is necessary in order to manage the applicant’s care.

    [2] Report by Ms AG, Occupational Therapist dated 19 February 2021.

22. Those views may be compared with those of Ms MG, an occupational therapist qualified by the applicant’s parents. Her report of 17 March 2021 has the following concluding paragraph:

    FFNR requires two carers throughout the transfer procedure regardless of alternative methods or assistive technology used. Throughout the trials, FFNR has still required additional support from a third carer for specific steps as outlined above and in the original report, and to decrease the duration of the transfer. Please refer to original report for further details. FFNR’s mother is unable to perform the tasks of the second carer, as she already needs to provide additional support as a third carer as well as meeting the needs of FFNR’s two siblings.

23. Her cross-examination by Mr Lee of counsel for the respondent on 27 July 2021 did not lead her to withdraw or qualify any of those remarks.

24. The transfers to which the occupational therapists referred occurred both by day and night .If one accepts both occupational therapists, there seems to be no doubt that a nurse and a level 3 support worker are required by day, in addition to the mother acting as a third carer as required.

25. Ms KB’s evidence included a care plan which she prepared without input from the applicant’s mother or father[3]. The plan was criticised by the applicant’s mother in many respects. Ms KB prepared a Nursing Care Assessment in March 2021, in which she criticised aspects of the applicant’s home care.

    [3] Proposed Care Plan by Ms KB dated 29 June 2021.

26. Her “Key Recommendations” were four:

    1.FFNR is subjected to a high intensity rehabilitation program with little rest time. There needs to be a scientifically valid, evidence-based review of the current high intensity program, with the benefits and achievable goals clearly defined or an alternative comforting, supportive care pathway put in place. This could be achieved via a case conference with the medical specialists involved in FFNR’s care and the parents.

    2.This current level of activity does not contribute to FFNR’s quality of life. Indeed the schedule is so busy, with little rest time, and keeping him away from family interactions may well have a negative impact on his quality of life.

    3.The time used on a number of the low value care activities could be redirected and the timing of a number of activities, e.g. bathing routine starting at 4.30am, could be changed to allow adequate rest time.

    4.Current staff hours could be remodelled to allow for more care on the night shift. This would cover periods of concern to parents, such as overnight support, to encourage the mother to rest.

27. In written submissions, Mr Lee of counsel for the respondent put that the focus in the National Disability Insurance Scheme Act 2013 (Cth) (‘the Act’) is on what is reasonable and necessary for the participant; not the “mere preferences of the participant’s family”.

28. As to this submission, I do not see that the case made by the parents is about “mere preferences”.  Rather, it is about what the circumstances of the case are said to require.  The mother’s continuing good health is something that the participant needs. 

29. The statute does not forbid consideration of the circumstances of the parents. On the contrary, section 34(1)(e) of the Act makes it mandatory to take account of what it is reasonable to expect, inter alia, families to provide. This provision requires consideration of the demands made upon the parents by the circumstances of the participant, their youngest child, who has grave disabilities. They are both medical professionals, one of whom has given up her profession to provide and guide care for the participant. More should not be asked of them than they can reasonably bear. It seems to me that at present, more is being asked of the mother than she can reasonably bear, and the participant’s long-term benefit is best promoted by reducing the burdens on her.

30. Section 34(1)(e) relevantly provides as follows:

    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.

    If more is being asked of the applicant’s mother than she can reasonably bear, it seems to me that section 34(1)(e) bears a construction which prima facie requires a support to be provided, subject, in particular, to the other mandatory provisions of section 34(1). In other words, it can, and does in this case, operate not just as a factor to refuse to grant a reasonable and necessary support, but as a factor giving the respondent at least a prima facie preference to grant it, other things being equal.

31. Mr Lee referred to “mere preferences” for the purposes of a submission that one aspect of the care provided to the applicant is not within the recommendations of Dr HG, a general paediatrician, who wrote a report dated 13 May 2021[4]. In the course of his report, the doctor commented that the family currently implement continuous monitoring of the applicant’s heart rate and oxygen saturation levels. He said that he and a nurse consultant recommend that he be assessed on clinical grounds and seek help if they notice any change in his colour or work of breathing (e.g. increased respiratory rate or any sign of increased effort to breathe) and call an ambulance for further assistance or correct any clearly identifiable cause (e.g. tracheostomy dislodgement or obstruction). 

    [4] Further Supplementary T-Documents, FST38, pg. 1224 – 1229.

32. Cross-examined about this statement by the doctor, the applicant’s mother said that when the applicant  was in Perth, doctors in that place gave them the monitor which was still being used, and a neurologist gave him a TENS machine.  Dr HG commented that the TENS machine was not based on his recommendations.

33. I comment that the applicant’s mother gave no evidence that the methods applied were her preferences.  Rather, she attributed their use to medical practitioners in Perth. A submission of the respondent that such Perth doctors ought to have been called to give evidence seems to me to involve that the evidence of the applicant’s mother ought to be rejected unless any medical advice is independently established by evidence. As a finder of fact, I was quite satisfied with the veracity of the mother’s evidence, and I would not reject it or require it to be formally proved otherwise than by the mother’s account.

34. The applicant’s mother also pointed out that even though Dr HG had not apparently agreed with his colleagues in Perth, he had not asked for their use to be stopped. 

35. The applicant’s mother and father clearly support the use of the monitoring and TENS machine.  Differences of opinion as to whether the practices should be recommended do not support a suggestion that the monitoring is the mother’s preferred treatment.

36. Dr LT, a rehabilitation medicine paediatrician from the Sydney Children’s Hospital, also wrote a report in May 2021. She described the applicant as fully dependent on caregivers to provide suctioning, because of the medical risks of obstruction of the tracheostomy, and/or displacement of it. She said that the caregivers have to monitor for when he needs suctioning, and said that the risk of obstruction is a cardiorespiratory arrest which would result in death within 3-5 minutes if the obstruction cannot be cleared.

37. He has pressure sores because he is completely immobile. At least three-hourly he needs to be turned.

38. She described him as a three person-hoist patient and needs two people to perform the physical items and activities to do the hoist, and one to protect his airway as he has no head control and is flexed into neck flexion while being hoisted. 

39. The application has the support of his parents, and both occupational therapists.

40. The assessment of Ms KB, when compared with that of others whose reports I received stands as a minority view, not only not supported by the applicant’s mother and father but not supported by other medically qualified personnel.  I treat the majority view as more persuasive.

41. The father’s description of the registered nurse ringing the alarm almost every hour so that usually his wife will get up to help the nurse graphically shows, in my opinion, that the nurse needs assistance throughout the night, and that it is not reasonable to require the mother to perform it.

42. It seems to me that each of the mandatory requirements of section 34(1) of the Act are satisfied by the support of an additional 11 hours of support from a level 3 carer, that is, 24 hours in all.

43. That service will assist the applicant to pursue the goal stated in his plan of getting supports to ensure his safety and avoid risks.

44. Remaining safe and avoiding risks to his health will facilitate his social participation, to the extent he will be able to participate.

45. The costs of the support are reasonable, and for reasons expressed by both occupational therapists, Dr HG and Dr LT, the support will be or is likely to be effective and beneficial for the applicant.

46. The funding of the support takes account, for reasons expressed above, of what it is reasonable to expect family to provide.  No informal network or the community will provide the support.

47. The support will not be funded or provided through other general systems of service delivery provided by any other person agency or body.

48. The applicant’s physical needs are for the registered nurse provided 24 hours a day, and a full-time Level 3 carer as well, in addition to the expected assistance from the mother, who is able to assist with activities requiring three persons.

49. For all of those reasons the reviewable decision will be set aside, and the matter is remitted to the respondent with the direction that the support of the services of a Level 3 support worker for 24 hours a day to assist the registered nurse is a reasonable and necessary support. 

I certify that the preceding 49 (forty-nine) paragraphs are a true copy of the reasons for the decision herein of Deputy President B W Rayment OAM QC.

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Associate

Dated: 21 October 2021

Dates of hearing:	15 - 16 and 26 - 27 July 2021
Date final submissions received:	23 August 2021
Solicitors for the Applicant:	Ms Jazas-Rogaris, Castle Law Group
Counsel for the Respondent:	Mr Li, 7 Wentworth Selborne
Solicitors for the Respondent:	Ms Musgrove, HWL Ebsworth