DGJJ and National Disability Insurance Agency

[2018] AATA 1263

DGJJ and National Disability Insurance Agency [2018] AATA 1263 (8 May 2018)

Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION

File Number:           2017/4248

Re:DGJJ

APPLICANT

AndNational Disability Insurance Agency

RESPONDENT

DECISION

Tribunal:Mrs J C Kelly, Senior Member

Date:8 May 2018

Place:Sydney

The Tribunal sets aside the decision made on 30 June 2017 by an internal reviewer and substitutes for that decision, the decision that it is reasonable and necessary to provide the following funding for the Applicant’s care and community access pursuant to s 33(2) of the Act:

(a)Up to eight hours of active overnight assistance every night, i.e. seven nights a week; and

(b)Up to 10 hours of active daytime assistance every day, i.e. seven days a week, for personal care supports and community access supports;

except during hours when funding is provided by the NSW health system.

.........................[sgd]...............................................

Mrs J C Kelly, Senior Member

CATCHWORDS

NATIONAL DISABILITY INSURANCE SCHEME – reasonable and necessary supports – funding for personal care – applicant seeking funding for full time care – whether full time care is a reasonable and necessary support – whether care during hospitalisation is appropriately funded by the NDIA – decision varied

LEGISLATION

National Disability Insurance Scheme Act 2013 (Cth), ss 3, 33, 34

National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)

CASES

Mulligan and National Disability Agency [2015] AATA 974

Re Drake and Minister for Immigration and Ethnic Affairs (No. 2) [1979] AATA 179; (1979) 2 ALD 634

SECONDARY MATERIALS

National Disability Insurance Scheme Operational Guideline – Planning

Inquiry Report, Disability Care and Support, Productivity Commission, released on 10 August 2011

REASONS FOR DECISION

Mrs J C Kelly, Senior Member

8 May 2018

The Applicant and her family

1. DGJJ, the Applicant, is now 13 years of age.  She suffers from the following medical conditions:

   ·Turner’s Syndrome from her birth in January 2005 which caused mild developmental delay. 

   ·Severe brain injury post mycoplasma encephalitis, 2009, resulting in bilateral spasticity, particularly affecting her lower limbs.

   ·Epilepsy.

   ·Ureteric reimplantation for vesicoureteric reflux.

   ·Poor swallow and drooling requiring home suction and mixture of gastrostomy and jejunostomy feeding.

   ·Chronic obstructive lung disease required hypertonic saline nebulisers, Colomycin nebulisers and nocturnal CPAP.

   ·Hypogammaglobuliaemia with monthly IV IgG infusions.

   ·Scoliosis

2. In a letter dated 31 May 2017, Dr Katie Banerjee succinctly described the Applicant’s condition:

   She is fully dependent on carers for all her needs including mobility, toileting, hygiene and feeding.  She has significant communications difficulties although she is able to turn her head and eyes and has some limited movements of her upper limbs which she sometimes uses to indicate pain or discomfort. 

3. The Applicant was granted access to the National Disability Insurance Scheme (NDIS) from 2 September 2015.  Her mother (the mother) is her primary carer.  Her father (the father) works to support the family financially. She has a younger brother aged nine and a younger sister who is aged seven.

   The application before the Tribunal

4. The Applicant is asking the Tribunal to decide that the amount of funding for personal care support considered “reasonable and necessary” pursuant to s 34(1) of the National Disability Insurance Scheme Act 2013 (the Act) is for 24 hours a day seven days a week, that is 168 hours a week (full-time care).

5. The decision the Tribunal is reviewing was made on 30 June 2017 by an internal reviewer who approved:

   ·Eight hours of active overnight assistance every night for three months, then reducing to five nights a week;

   ·four hours of personal care supports a day; and

   ·two hours of community access supports each week day.

6. The Respondent’s position changed before the hearing of this matter. In paragraph 33 of its Statement of Position dated 26 March 2018, it submitted that the “correct and preferable decision” was to vary the decision under review and allow the following funding for the Applicant’s care and community access pursuant to s 33(2) of the Act:

   (c)Eight hours of active overnight assistance every night, i.e. seven nights a week; and

   (d)Eight hours of active daytime assistance every day, i.e. seven days a week, for personal care supports and community access supports “each week day”.

7. In response to a question from the Tribunal after the hearing about the ambiguity of paragraph 33(b), the Respondent confirmed in writing that paragraph 33(b) of the Respondent's Statement of Position should state that the Applicant requires 8 hours of active daytime personal care supports seven days per week.

8. The Respondent accepts that the Applicant requires full-time care, but argues that the NDIS is not responsible for funding the full amount of care.  It is prepared to fund 112 hours of personal care per week.

9. Therefore, the Applicant is seeking funding from the NDIS for 8 hours of active daytime personal care supports per day more than the Respondent is prepared to grant, that is 56 hours a week.  

10. Following is an amended summary of the care the Applicant requires set out in the Applicant’s Statement of Position dated 23 March 2018:

    ·frequent suctioning, sometimes as frequent as every 30 minutes (when unwell every 10 minutes);

    ·feeding by a gastronomy port (the Home Enteral Nutrition (HEN) needs flushing every two hours and refilling every four hours), including regularly checking the port site for leaks;

    ·degassing into a bile bag twice a day;

    ·regular repositioning, and being moved between her bed, wheelchair and princess chair by hoist;

    ·changing continence aids, approximately four to five times a day, and then cleaning and applying creams;

    ·monitoring of urine output and catheterisation when needed;

    ·chest physiotherapy every morning and afternoon followed by a nebuliser;

    ·supervision on a CPAP machine;

    ·administration of medications which are distributed via PEG;

    ·overnight care which involves monitoring, suctioning, repositioning, medications, nappy changes and cleaning;

    ·regular bathing as she is unable to regulate her temperature which causes seizures;

    ·movement and massage of limbs to prevent stiffness and muscle tightness;

    ·regular observation of heart rate, oxygen levels and blood pressure, with appropriate interventions following;

    omonitoring of seizures, including reflex seizures which can occur when she is bumped;

    oconstant observation to prevent her from aspirating or choking;

    osensitive touching due to pain caused by scoliosis; and

    otwo carers whilst being driven in a car so that one person can monitor her seizures as she is at high risk of choking.

    The legislative scheme

11. Section 3(1) of the Act sets out the objects of the Act, which include giving effect to Australia’s obligations under various international conventions and covenants, in conjunction with other laws, and to provide for the NDIS in Australia.

12. Section 3(3) of the Acts sets out matters to which regard is to be had in giving effect to the Act, including the need to ensure the financial sustainability of the NDIS and the provision of services by other agencies, departments and organisations and the need for interaction between the provision of mainstream services and the provision of supports under the NDIS.

13. Section 33(2) of the Act sets out what must be included in the statement of participant’s supports, which must be included in the participant’s plan. The statement of participant’s supports must be prepared with the participant and approved by the Chief Executive Officer (the CEO).  Relevantly, the statement of participant’s supports must specify:

    …

    (b) the reasonable and necessary supports (if any) that will be funded under the National Disability Insurance Scheme

14. Relevantly, s 34(1) of the Act provides that the CEO must be satisfied of five criteria for the purpose of specifying the reasonable and necessary supports that will be funded. The two criteria that are in issue in this case are:

    (e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide; and

    (f)the support is most appropriately funded … through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services

    (i)     as part of a universal service obligation; or

    (ii)    in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.

15. When considering those criteria, the Tribunal has to take into account relevant National Disability Insurance Scheme Rules[1].

    [1] Section 34(2) of the Act.

16. Relevant to this case are the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Rules).  Rule 3.4 sets out matters that must be considered when deciding whether the funding sought takes account of what it is reasonable to expect families, carers, informal networks and the community to provide.  In respect of a participant child, they include:

    (i)that it is normal for parents to provide substantial care and support for children; and

    (ii)whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and

    (iii)the extent of any risks to the well-being of the participant’s family members or carer or carers; and

    (iv)whether the funding or provision of support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s well-being.

17. Rules 3.5 to 3.7 and Schedule 1 to the Rules set out matters to be considered when deciding whether supports are most appropriately funded or provided through NDIS rather than other support systems.

18. Schedule 1, paragraph 7.13 of the Rules states:

    The NDIS will be responsible for supports that a student requires that are associated with the functional impact of the student’s disability on their activities of daily living (that is, those not primarily relating to education or training attainment), such as personal care and support …

19. The CEO has issued Operational Guidelines to assist decision-making and the performance of functions under the Act. The Tribunal accepts that Operational Guidelines represent policy that should be applied unless there are cogent reasons not to do so.[2]  Relevant in this case are paragraphs 10.7 and 10.8 and Appendix One of the National Disability Insurance Scheme Operational Guideline – Planning.

    [2] Re Drake and Minister for Immigration and Ethnic Affairs (No. 2) [1979] AATA 179; (1979) 2 ALD 634; Mulligan and National Disability Agency [2015] AATA 974 at [31].

    The Applicant’s reasons for seeking full-time care to be funded by the Respondent

20. The mother gave oral evidence and provided two written statements to the Tribunal, in addition to material in the T documents.[3]  A recently registered nurse, who had worked as a carer for the Applicant for two years until October last year, also gave oral evidence, based on a document she had prepared and which appears in the T documents.

    [3] The documents provided by the Respondent to the Tribunal and the Applicant pursuant to s 37(1) of the Administrative Appeals Tribunal Act 1975.

21. The father gave no evidence and provided no statement in support of the application.

22. The reasons raised by the evidence before the Tribunal supporting the claim for full-time care to be funded by the Respondents were:

    ·The mother is the primary carer for the Applicant and for two younger school age children and is subject to competing and onerous demands, including undertaking the majority of household tasks.    

    ·The mother provides ‘non-direct’ personal care support.  She has a very demanding and time-consuming supervisory, management and co-ordination role for the care of the Applicant, including: co-ordinating with the provider of the paid carers and rostering carers, supervising the paid carers in relation to daily needs; directing paid carers in relation to medication and other interventions, making medical appointments, and ordering and managing supplies of consumables and equipment, and arranging and co-ordinating multiple medical appointments and emergency admissions. 

    ·The Applicant needs a paid carer when the mother is fulfilling her other roles and cannot provide personal care for her.  

    ·The mother is able to care for the Applicant from 10 am to 2 pm on weekdays.  She has to take the two younger children to and from school, to before and after school activities and spend time with them, particularly the younger child, to maintain her relationships with them, and for her and their wellbeing.  The school is some distance from the family home.

    ·The younger child requires general parenting from the mother and father.

    ·The mother will assist the paid carer with some tasks during the morning and afternoon personal care routines.

    ·She requires time to herself once a month to assist her psychological well-being

    ·She has a shoulder injury which prevents her lifting or repositioning the Applicant.

    ·The Applicant requires a carer when she is admitted to hospital overnight.

    ·The Applicant requires two people to transport her to hospital for appointments and admissions.

    ·The Applicant requires two carers when she is unwell and her care needs increase.

    ·The father does not provide significant direct personal care for the Applicant because his time is consumed by working to sustain the family financially.

    ·The mix of care hours changes regularly in response to the Applicant’s care needs at any particular time, and the other demands on the mother.

23. The Applicant’s solicitor emphasised that the request for full-time care does not mean that the mother would stop providing direct personal care for the Applicant.  The Applicant acknowledged that the previous 12 months’ funding had already been expended, with approximately three months until the review date and argued that the funding the Respondent was prepared to provide “did not meet the Applicant’s care need and were not consistent with the reality of the Applicant’s needs and family life”.

    Consideration of the evidence and the issues

    The family

24. The Tribunal accepts the submission of the Respondent’s representative, Mr Eskerie, that the NDIS is not a replacement for family support and that there is no expectation that it should cover all the needs of a person.  It is normal for parents to provide substantial care and support for children.[4] The Tribunal has to determine the support that is reasonable for the Applicant’s family to provide to her, taking into account her and their particular circumstances. 

    [4] Rule 3.4(i) of the Rules.

25. The Tribunal uses the term “carer” to refer to paid carers.

26. It is not in dispute that the Applicant’s care needs are substantially greater than those of other children of a similar age.  She requires full-time personal care.

27. The mother’s evidence is that neither the mother nor father has family members in Australia who can assist. In the past, the mother’s sister came to Australia and helped from 2013 to 2015, and the father’s father, now 80 years old, came to Australia for a period.

28. The following table is based on the mother’s written statement dated 1 February 2018 and her oral evidence.  The table shows the weekly schedule for each member of the family, other than that the Applicant has a carer every night from 10 pm until 6 am.      

The Applicant’s Carer	Son	Daughter	Mother	Father
Monday	6am to 10am: carer 10am to 1pm: Mother cares 1pm to 7pm: carer 7pm to 10pm: Mother cares	9:30am to 3:30pm: school 6pm to 6:30pm: Guitar, Penrith	9:30am to 3:30pm: school 5:45pm to 6:15pm: Piano, Penrith	AM: takes son and daughter to school, 45 minutes each way Every Monday/once a month/whenever possible, cooks for homeless people 10am to 1pm or 2pm: cares for the Applicant PM: picks up son and daughter from school (45 minute drive each way) and takes them to activities until 7pm 7pm to 10pm cares for the Applicant	Uber driver: 12 hours
Tuesday	6am to 10am: carer 10am to 1pm: Mother cares 1pm to 7pm: carer 7pm to 10pm: Mother cares	9:30am to 3:30pm: school	9:30am to 3:30pm: school	AM: takes son and daughter to school, 45 minutes each way 10am to 1pm or 2pm: cares for the Applicant PM: picks up son and daughter from school (45 minute drive each way), prepares dinner and cares for son and daughter 7pm to 10pm cares for the Applicant	Uber driver: 12 hours
Wednesday	6am to 10am: carer 10am to 1pm: Mother cares 1pm to 7pm: carer 7pm to 10pm: Mother cares	9:30am to 3:30pm: school	9:30am to 3:30pm: school	AM: takes son and daughter to school, 45 minutes each way 10am to 1pm or 2pm: cares for the Applicant PM: picks up son and daughter from school (45 minute drive each way), prepares dinner and cares for son and daughter 7pm to 10pm cares for the Applicant	8:30am: leaves home, works as a sous chef from 10am to 10pm Home at 11pm
Thursday	6am to 10am: carer 10am to 1pm: Mother cares 1pm to 10pm: Mother cares	9:30am to 3:30pm: school 4:45pm to 7:20pm: pre uni maths tuition	9:30am to 3:30pm: school	AM: takes son and daughter to school, 45 minutes each way 10am to 1pm or 2pm: cares for the Applicant PM: picks up son and daughter from school and attends after school activities 10pm: returns home	8:30am: leaves home, works as a sous chef from 10am to 10pm Home at 11pm
Friday	6am to 10am: carer 10am to 1pm: Mother cares 1pm to 7pm: carer 7pm to 10pm: Mother cares	9:30am to 3:30pm: school	9:30am to 3:30pm: school	AM: takes son and daughter to school, 45 minutes each way 10am to 1pm or 2pm: cares for the Applicant PM: picks up son and daughter from school (45 minute drive each way), prepares dinner and cares for son and daughter 7pm to 10pm cares for the Applicant	8:30am: leaves home, works as a sous chef from 10am to 10pm Home at 11pm
Saturday	6am to 12noon: carer 12noon to 5pm: carer 5pm to 10pm: Mother cares	12pm to 2pm: library with Mother	12pm to 2pm: drama, Penrith	11am: leave home to take daughter to drama and son to library, does grocery shopping 4-4:30pm: arrive home, washing, cleaning, cooking. Sometimes projects with son or daughter 5pm to 10pm: cares for daughter	8:30am: leaves home, works as a sous chef from 10am to 10pm Home at 11pm
Sunday	6am to 12noon: carer 12noon to 2pm: Mother cares 2pm to 5pm: carer 5pm to 10pm: Mother cares	10:30am to lunchtime: swimming	10:30am to lunchtime: swimming	10:30am to lunchtime: swimming with son and daughter 12noon to 2pm: carer 2pm to 5pm: church with son and daughter if possible, if have carer 5pm to 10pm: cares for daughter	Sleeps AM Rest of day does things around the house, gardening and activities with son and daughter. In the afternoon, spends time with the Applicant if the rest of the family go to church

1. The difficulty the Tribunal has in this case is that the mother’s evidence is central to its findings and it found her evidence to be unreliable. She is the person who communicates on behalf of the Applicant.  To the extent that evidence before the Tribunal relies on information provided by the mother, the Tribunal does not accept that it is reliable. 

1. The Tribunal found the mother’s evidence unreliable for the following reasons.

2. The mother emphasised that two carers, or one carer and she, are necessary to transport the Applicant or to take her outside.  That is not consistent with contemporaneous records made by the carers. There were two bundles of those records provided to the Tribunal by the Applicant.  One was described as “Handover notes for period 20 January 2018 to 13 March 2018” and the other was described as “Progress Notes” for the period 16 February 2018 to 13 March 2018. The hearing was on 27 March 2018. The Tribunal does not accept the mother’s explanations given in response to questions about those inconsistencies.

3. The mother emphasised that the Applicant’s health changes all the time.  The contemporaneous notes do not support that evidence.

4. The mother emphasised the degree to which she is involved in supervising care and assisting in providing care, and giving instructions, when carers are present. The contemporaneous notes do not support her evidence. 

5. The mother said that the contemporaneous notes are kept in the Applicant’s room but that she does not read them.  She also said that she does not know what happens when she is not at home. The Tribunal finds that not checking the readily available carer records from time to time to see what the carers are recording, particularly when she is not at home, is not consistent with the degree of supervision the mother claimed she exercises.  That her supervisory role is not as she claimed is reinforced by her evidence that she was unaware that only one carer had taken the Applicant out in the van to the pond and for a walk to the pond.  The undated Summary of Daily Care Routine from the provider specifies in the Afternoon Routine “commence activity (games, reading, going to the mail, or for a walk to the pond”.  Going to the pond is a regular activity carers undertake with the Applicant.   

6. During cross-examination about the activities set out in the above table, the mother said that when she provided that information, the company were having a lot of trouble getting carers and she did not have a carer from 7 pm to 10 pm during the week but she had one at the time of the hearing and needs one.  She said that between 7 pm and 10 pm she needs to get dinner ready, get the son and daughter showered, ready for bed and help with their homework.  In particular, her daughter will not go to bed without her.  At that time her daughter was not going to bed until 10.30 pm.

7. The Tribunal would have expected the mother to have set out those matters in her statement.  It finds that she was exaggerating her need for paid care for the Applicant to support the claim for 24 hour care.

8. The mother told the Tribunal that that she leaves home at 8 am to take her son and daughter to school and gets home at 10 am, and leaves at 2 pm to pick them up from school and does not get home until 4.30 pm to 5 pm.  In her written statement, the mother had said that it was a 45 minute drive to and from the children’s school. The Tribunal accepts that the time the journey takes will depend on the traffic, but while the return journey may be two hours, the Tribunal has difficulty accepting that it regularly takes two and a half to three hours.  The Tribunal found other estimates of time taken to get to activities with the son and daughter were also exaggerated, particularly between her home and Penrith which is about 10 kilometres distance.

9. The mother’s evidence about her husband’s work commitment was inconsistent. Her written evidence was that he worked as a sous chef four days a week and as an Uber driver two days a week.  During her oral evidence, she said that he worked as a sous chef five or six days a week and if he was not working in that job, he would work as an Uber driver another one or two days, taking only Sunday off work. 

10. There is no objective documentary evidence about the father’s employment and no evidence from him before the Tribunal.  Because it does not accept that the mother’s evidence is reliable, it does not accept that Sunday is the only day the father does not work.  It also does not accept that he currently works 12 hours a day when he is working as an Uber driver. He may have done so in May 2017 when he had no other work and drove on Friday and Saturday. The Tribunal finds that the father would determine when and which jobs he accepted as an Uber driver.  

11. The Tribunal does not accept the mother’s claims that the father does not or cannot provide personal care for the Applicant.  She acknowledged that he had done so in the past. She claimed that he worked for nine years as the second in charge in a club and then was given notice to leave to take a lower position because of taking so much time off to care for the Applicant.  She said that in the last month he had taken time off work to help because carers were not available.

12. The contemporaneous records made by the carers refer to handover of the Applicant to the father and that he had performed suctioning for the Applicant.  In cross-examination, she accepted that the father could perform suctioning for the Applicant.

13. The mother said that the father leaves for work as a sous chef at 8.30 am, or, if he can take their son and daughter to school, he leaves at 7.30 am.  The mother said that the club where he works and the school are a 45 minute drive from their home.  Based on Google maps, the Tribunal estimates that an additional 20 minutes would be added to the father’s trip when he takes the children to school.  All those times would depend on the traffic conditions.

14. The Tribunal does not accept that the father provides as little to support to the Applicant, the mother, the son and the daughter as her evidence demonstrates.   It does not accept that the mother has to drive the son and daughter to school every school day, and in particular does not accept that she has to drive them to school on the days the father works as a sous chef at the club.

15. The mother claimed that she suffers from a shoulder and back condition which prevent her from moving the Applicant.  An ultrasound report dated 4 May 2017 is the only corroborative evidence about the mother’s shoulder condition. There is no corroborative evidence about a back condition.  In relation to her shoulder, the mother said that she had had physiotherapy treatment and had been advised by her general practitioner to have a cortisone injection. There is no corroborative evidence. The Tribunal does not accept that the mother’s physical condition prevents her from providing personal direct care to the Applicant, including moving her. 

16. The Tribunal accepts that caring for the Applicant is demanding for each of the other family members, and in particular for the mother.  The Tribunal has taken into account the school counsellor’s report and the report of the mother’s clinical psychologist.

17. The mother first consulted the clinical psychologist in August 2017. The application for review was filed in the Tribunal on 3 July 2017.

18. The school counsellor became involved with respect to the son and daughter at the request of their mother.   The school counsellor first saw the son in May 2017 when the Applicant was in palliative care.  He first saw the daughter in August 2017.

19. The Tribunal infers that the mother’s seeing the clinical psychologist and the daughter seeing the school counsellor, were in part at least, for the purpose of obtaining evidence for these proceedings.

20. The first mention of difficulties in the marriage between the father and mother was in the mother’s statement dated 14 March 2018.  In the statement dated 1 February 2018 the mother mentioned that the father suffered from diabetes “which makes things a bit harder for him”. The Tribunal does not accept that the marriage is in the state the mother claimed.

21. The case before the Tribunal is that the extent of the risk to the well-being of the mother is such that 24 hour care for the Applicant is necessary, including because the risk to the mother’s wellbeing is a risk to the Applicant’s wellbeing. 

22. The Tribunal accepts that the mother is the primary carer for the son and daughter. She has been providing personal care for the Applicant, on her evidence, up to seven hours a day on some days.

23. The Tribunal accepts that she has to liaise with doctors, the chronic critical nurse from the Children’s Hospital Westmead and the care provider, and ensure equipment and supplies are available for the Applicant. The Tribunal accepts that the mother has to maintain her own mental and physical health in order to undertake her caring roles. 

24. It accepts that the son and daughter have experienced some difficulties arising from having a sibling who requires 24 hour care and frequent hospitalisation, whose future is uncertain.   The mother spends a lot of time taking them to and from school and to various activities, as summarised in the above table, which also shows that she has time to spend with each of them separately while the other is attending an activity. 

25. The Tribunal accepts that the son wants to spend more time with his father, but the mother claims she takes the son and daughter to church when she can on a Sunday afternoon or arranges for extra English lessons at that time, the only time according to the mother when the father is available to spend time with his children.

    Hospitalisation

26. The Respondent pointed to the Applicant’s history of hospital visits in support of its position that full-time care was not necessary because when she was in hospital, the NDIS will not be responsible for her care, as set out in paragraph 7.5 of Schedule 1 to the Rules.

27. The Patient Attendance summary from 1 January 2014 until 29 November 2017, show that the Applicant has been in hospital overnight 15 times in 2017 for a total of 91 nights until 29 November 2017, five times in 2016 for 37 nights, four times in times in 2015 for 17 nights and four times in 2014 for 11 nights.  There were also many additional admissions during the daytime from 2014 to 2017.

28. Ms Finlay, the Applicant’s representative, acknowledged that the Act limits the supports that can be provided or funded under the NDIS “to supports that are not more appropriately funded or provided through other service systems” but argued that the Respondent should fund the care during hospitalisation because that care is related to the Applicant’s “ongoing functional impairment and that enable (the Applicant) to undertake activities of daily living”.[5]  In particular, she needs a carer familiar with her who can communicate if she is in pain, or needs something, and to attend to her personal care including to change her nappy, and to attend to feeding and suctioning.

    [5] Paragraphs 7.1 and 7.4 of Schedule 1 to the Rules, entitled Considerations relating to whether supports are most appropriately funded through the NDIS to the Rules.

29. Ms Finlay’s secondary argument was that the Tribunal should not take the Applicant’s hospital admission history into account because, on the mother’s evidence, her admissions will not be as frequent as it was in the past.  Her mother said that the Applicant had only been admitted twice in 2018 and that the hospital discourages admission into hospital because of the risk of infection to the Applicant.

30. During cross-examination, the mother told the Tribunal that, following her representations to the Minister for Health in New South Wales, the hospital now pays for 12 hours of over-night care each night that the Applicant is admitted.  She explained that that was the reason there was no record of a carer being booked on two nights in September 2017 and one night in October 2017 when the Applicant was hospitalised.   

31. The mother’s evidence was unclear about when that arrangement began, however on comparing the records of admission to hospital and bookings for carers in evidence, the Tribunal finds that the arrangement was in place at least from the admission of 28 to 31 August 2017.  The mother did not mention that arrangement in either of her statements provided to the Tribunal dated 1 February 2018 and 14 March 2018 in which she referred to the need for carers to be with the Applicant when she was admitted to hospital.  That she did not disclose the arrangement in her written statements reinforces the Tribunal’s finding that her evidence is unreliable.

32. Appendix One of the Operational Guideline – Planning lists “care as an admitted patient in public and private hospitals” as a support that is “generally funded by other parties”. It lists “Assistance with daily personal activities” as a support “which, dependent on their purpose, may be funded by the NDIS or other parties” and then states when NDIS will provide that support:

    NDIS: where the assistance is related to an ongoing functional impairment (however not in hospitals, except where a continuation of any assistance for communication and challenging behaviours).

33. It is relevant that the Applicant has had many admissions to the Children’s Hospital at Westmead.  She has had close involvement with that hospital’s Palliative Care Team since she was first referred in February 2016.  At some point, a chronic critical nurse was appointed to liaise with the family. The hospital now provides 12 hours of care when the Applicant is admitted overnight, as set out earlier in this decision. The Tribunal has no independent evidence about the reasons that care was provided. 

34. The Tribunal does not accept Ms Finlay’s submission that the NDIA should provide for that care. It is being provided by the NSW health system.  There is no good reason to change that position.

35. The Tribunal has taken into account the section 3(3)(b) of the Act, the object of needing to ensure the financial sustainability of the NDIS, and the Productivity Commission’s 2011 report entitled “Disability Care and Support” at pp 237-238.

    Access to generic services, such as health and housing, can affect demand for NDIS-funded services, and vice versa.  It will be important for the scheme not to respond to problems or shortfalls in mainstream services by providing its own substitute services. To do so would weaken the incentives by governments to properly fund mainstream services for people with a disability, shifting the cost to another part of government (such as from a state government to the NDIS, or from one budget ‘silo’ to another).  This ‘pass the parcel’ approach would undermine the sustainability of the scheme and the capacity of people with a disability to access mainstream services.

36. That leaves the question of whether the NDIS should pay for a carer for the Applicant for any other period when she is admitted to hospital. The Tribunal takes into account the exception for assistance for communication. The Tribunal has taken into account the evidence, including the mother’s evidence about the Applicant’s inability to communicate and the need for her to be watched closely.  She stated that the signs that the Applicant is in pain include hitting her stomach and scratching her PEG (percutaneous endoscopic gastronomy) tube, flushing and being in tears from the pain. The mother wrote that regular carers can read the cues from the Applicant, for example when she soils her nappy. The Tribunal does not accept that a carer is required for the purpose of assisting the Applicant with communication while she is in hospital during the day.The Tribunal notes that this issue was an aspect of the general argument about the care the family should provide.

37. The Tribunal has not followed the approach of the internal reviewer that hospitalisation would create a “surplus of funds” which could be used to fund supports.  Rather, it finds that a decision should be made which ensures that NDIA funding is not provided when funding is provided by the NSW health system.

    Education

38. The evidence before the Tribunal is that the Applicant was given a Certificate of Exemption from Attendance/Enrolment at School under Section 25 of the Education Act 1990 by the Principal of Kurrambee School on 1 March 2017 because she is “severe medically fragile…”  The mother said that the Applicant is enrolled for home schooling.

39. Mr Eskerie submitted that, if not for the risk to the Applicant’s health status, she would be able to attend a specialised disability school that would cater to her disability needs.

40. The Tribunal does not accept that argument. It accepts that the Applicant requires supports that are associated with the functional impact of her disability on her activities for which the NDIS is responsible in accordance with paragraph 7.13 of the Schedule to the Rules.

    Conclusion

41. For the above reasons, the Tribunal concludes that it is reasonable for the Applicant’s family to provide six hours personal support care a day.   

42. It finds that it is reasonable and necessary to provide the following funding for the Applicant’s care and community access pursuant to s 33(2) of the Act:

    (a)Up to eight hours of active overnight assistance every night, i.e., seven nights a week; and

    (b)Up to 10 hours of active daytime assistance every day, i.e. seven days a week, for personal care supports and community access supports;

    except during hours when funding is provided by the NSW health system.

43. The Tribunal advised both parties that it proposed to make a decision in those terms and provided an opportunity for both to comment.  Neither wished to do so.

    Decision

44. The Tribunal sets aside the decision made on 30 June 2017 by an internal reviewer and substitutes for that decision, the decision that it is reasonable and necessary to provide the following funding for the Applicant’s care and community access pursuant to s 33(2) of the Act:

    (c)Up to eight hours of active overnight assistance every night, i.e. seven nights a week; and

    (d)Up to 10 hours of active daytime assistance every day, i.e. seven days a week, for personal care supports and community access supports;

    except during hours when funding is provided by the NSW health system.

I certify that the preceding 73 (seventy-three) paragraphs are a true copy of the reasons for the decision herein of Mrs J C Kelly, Senior Member

.........................[sgd]...............................................

Associate

Dated: 8 May 2018

Date of hearing:	27 March 2018
Solicitors for the Applicant:	Ms J Finlay, Legal Aid NSW
Solicitors for the Respondent:	Mr K Eskerie and Ms A Bortone, Sparke Helmore