QZHH and National Disability Insurance Agency - [2018] AATA 1465

QZHH and National Disability Insurance Agency [2018] AATA 1465 (31 May 2018)
Administrative Appeals Tribunal
ADMINISTRATIVE APPEALS TRIBUNAL )
) No: 2017/3464
NATIONAL DISABILITY INSURANCE SCHEME DIVISION)
Re: QZHH
Applicant

And: National Disability Insurance Agency
Respondent
CORRIGENDUM
TRIBUNAL:  Member Kim Parker
DATE OF CORRIGENDUM:   1 June 2018
PLACE:           Melbourne

The Tribunal directs the Registrar, pursuant to subsection 43AA(1) of the Administrative Appeals Tribunal Act 1975, to alter the text of the decision in this application as follows:

In paragraph [65], the reference to “presently” is amended to be a reference to “presenting”;

In paragraph [165], the reference to “760” is amended to be a reference to “800” and the reference to “6,728” is amended to a reference to “6,688”;

In paragraph [251], the reference to “12” is amended to be a reference to “13”.

..................................................................
Member
Division:NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number(s): 2017/3464
Re:QZHH
APPLICANT

AndNational Disability Insurance Agency
RESPONDENT

DECISION
Tribunal:Member Kim Parker
Date:31 May 2018
Place:Melbourne

The decision under review in this application is the internal review decision made on 13 June 2017 by a delegate of the CEO of the National Disability Insurance Agency (NDIA), affirming an earlier decision by the NDIA to approve a statement of participant supports for inclusion in the Applicant’s National Disability Insurance Scheme (NDIS) plan which commenced on 1 December 2016.
For the reasons set out below, the Tribunal sets aside the decision under review dated 13 June 2017 and in substitution, decides:
1.to set aside the decision of the NDIA on 1 December 2016 to approve the statement of participant supports as referred to above, and in substitution, approves a statement of participant supports that:
a.specifies the following reasonable and necessary supports for the Applicant as follows:
Support Area: Support Coordination
Details: Specialised Support Coordination and Support Coordination. Assist family to implement and manage NDIS plan.
Support Area: Assistive Technology
Details: Equipment requirements for the next 13 months, pending quotes and NDIA approval. This may include communication device and wheelchair mounts, slings, knee orthoses, eye gaze controls, change table, power wheelchair, body splint, AFO and orthotic shoes. Also funding is available for repairs of equipment that is not covered under the warranty.
Support Area: Improved Daily Living
Details: Provision of therapy services across all environments; with therapists to work in collaboration to support your family to implement strategies to assist in meeting your goals as per the plan including support to staff where required. Detailed progress report on strategies implemented and outcomes against relevant goals in plan, to include ongoing functional needs with goals to inform the next plan. Therapists are to adhere to the NDIS guidelines relating to NDIS interface with education and health. Therapy allocation including therapy travel – can be used flexibly as required by family.A component of the budget for this support area is to include at least 26 hours for music therapy for the Applicant.
Support Area: Core Supports
Funding for your continence products including delivery. Funding for your assistive technology products are level 1 of the AT complexity Level Classification document and available ‘off the shelf’. Warning: some low cost equipment like bed rails, sticks, covers and weighted blankets are high risk and should NOT be purchased with these funds as they require an AT assessment. Therapy items should not be purchased.
Assistance with self-care to be provided by a support carer, 24 hours a day for four days each week and 16 hours a day for three days each week. This includes Saturday, Sunday and public holiday rates. 800 hours per year of personal care by a support carer will be deducted for when you are in attendance at your school.
Eight days (for 24 hours) of short-term accommodation for the Applicant should the Applicant’s parents choose this support as an alternative form of personal care for the Applicant. If this support is provided to you on any day, it will take the place of a day of carer support with self-assistance as set out in the above paragraph.
In circumstances where:
(a) a support carer was previously scheduled to fill a shift to care for you; and
(b) within 24 hours before that shift is due to commence, the carer advises the agency they can no longer care for you; and
(c) the agency and your parents exhaust all options of engaging another carer to fill that shift; and
(d) your father is due to work that day or if the shift in question is a night shift, your father is due to work the following day;
assistance with self-care by a qualified nurse will be provided to you.
The provision of initial client-specific carer training to NDIS-funded support carers (currently $1,000 per carer) (beyond the first five carers per year who are funded by the Royal Children’s Hospital (RCH)). The cost of paying the NDIS-funded support carer for the hours they will spend to undertake this training, will not be funded under this plan by the NDIS.
The provision of refresher client-specific carer training to NDIS-funded support carers provided that the training is required as a consequence of a change to the seizure management protocols in the RCH Care Manual.

b.to extend the review date on the plan to 30 June 2019; and
c.to amend the global budget figures for each Support Area to accord with calculations to be undertaken forthwith by the NDIA to make the necessary adjustments for the new period of the plan which runs from the date of this decision to the date of the new review date (13 months); and to incorporate the recalculation that is required as a consequence of the decision of the Tribunal in relation to the Improved Daily Living Support Area and the Core Supports Area. General liberty to apply to this Tribunal if any dispute arises between the parties as to the basis upon which the budget calculations are performed.

...........................[sgd].............................................
Member Kim Parker
NATIONAL DISABILITY INSURANCE SCHEME – NDIS participant is a young child who has complex and high care needs - review of an interim review decision of the National Disability Insurance Agency relating to a decision to approve a statement of participant supports in the participant’s NDIS plan – participant’s plan ceased to have effect as it was replaced by subsequent NDIS plans – characterisation of the Tribunal’s decision – whether the Tribunal’s decision enlivened the participant’s previous plan to allow for the participant to access the approved supports at the current time – supports in dispute included the level of personal care support, client-specific training of carers, backup nursing support at times when there were no carers available to provide personal care to the participant, and music therapy – whether the requested additional or increased supports were reasonable and necessary supports – level of personal care support that is reasonable to expect each of the participant’s parents to provide, in light of their respective mental health conditions and simultaneous need also to care for the participant’s sibling – consideration of the Carer Recognition Act 2010 – intersection with supports provided under the general health system – intersection with supports provided under the general education system – reviewable decision set aside and decision of Tribunal substituted
Legislation
Administrative Appeals Tribunal Act 1975 (Cth), s 37, 43
Carer Recognition Act 2010 (Cth) s 7, 10 and Schedule 1
Disability Discrimination Act 1992 (Vic)
National Disability Insurance Scheme Act 2013 (Cth) ss 3, 4, 31, 32A, 33, 34, 35, 37, 99, 100, 103
National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth)
Cases
Re Drake and Minister for Immigration and Ethnic Affairs (No.2) (1979) 2 ALD 634
Re FJKH and National Disability Insurance Agency [2018] AATA 1294
Re LNMT and National Disability Insurance Agency [2018] AATA 431
Re PNMJ and National Disability Insurance Agency [2015] AATA 866
Re SHGH and National Disability Insurance Agency [2018] AATA 674
Re SSBV and National Disability Insurance Agency [2017] AATA 2174
Secondary Materials
NDIA Operational Guidelines – Planning (Chapter 10), Appendix 1
COAG Principles to Determine the Responsibilities of the NDIS and Other Service Systems
REASONS FOR DECISION
Member Kim Parker
31 May 2018
INTRODUCTION

The Applicant is a participant under the National Disability Insurance Scheme (NDIS). The NDIS operates under the National Disability Insurance Scheme Act 2013 (Cth) (Act) and regulations made under that Act. The National Disability Insurance Agency (NDIA) is a Commonwealth government agency responsible for administering the NDIS.
The Applicant seeks review by this Tribunal of a statement of participant supports in the Applicant’s NDIS plan which was approved and commenced on 1 December 2016.
The Applicant’s parents consider that the Applicant requires the following supports:
(a)an increase in the total number of hours of carer support (Carer Support) to 168 hours per week (representing one-to-one 24/7 care for the entire year);[1]
(b)funding for the training of carers by Barwon Health in excess of five carers per year (funding for the first five carers per year is provided by the Royal Children’s Hospital (RCH) under its Family Choice Program) (Top Up Carer Training Support);
(c)funding for the additional costs associated with engaging nurses, instead of support carers, when there are no support carers available to provide personal care for the Applicant (Back-up Nursing Support); and
(d)an increase in the total number of hours per year for music therapy (Music Therapy Support) to 26 hours per year.
[1] The reference to 24/7 care in these reasons for decision is a reference to one support carer providing the Applicant with personal care for 24 hours per day, 7 days per week. The reference to 16/7 care is a reference to one support carer providing the Applicant with personal care for 16 hours per day, 7 days per week.
The NDIA considers that the provision of year-round 24/7 care for the Applicant is not a reasonable and necessary support under s 34 of the Act. Essentially, the NDIA contends that the Applicant’s parents should provide personal care for the Applicant for some hours in the day, as would be appropriate for any parent caring for a five-year old child.
The Applicant’s parents consider that 24/7 care is required for the Applicant on account of the particular care needs of the Applicant; the complex family circumstances of the Applicant’s family; limitations on the Applicant’s mother being able to provide care independently to the Applicant due to her long-standing mental health condition; and to provide sufficient opportunity for the Applicant’s parents to work and study to protect their own mental health and well-being and to care for their other child.
This application for review was lodged by the Applicant on 14 June 2017.
On 14 July 2017, the NDIA lodged with the Tribunal a set of documents pursuant to its obligations under s 37 of the Administrative Appeals Tribunal Act 1975 (Cth) (AAT Act) (T-Documents).
On 26 September 2017, the NDIA lodged a set of documents comprising the T-Documents that it had lodged in connection with the Applicant’s previous application for review in 2015 (see paragraph [15]) (Reissued T-Documents).
On 9 October 2017, a statement of position on behalf of the Applicant in support of her application was lodged with the Tribunal (Applicant’s SOP).
The NDIA filed its statement of position on 25 October 2017 (NDIA’s SOP).
Other evidence and documents were filed with the Tribunal and will be referred to by the Tribunal as relevant throughout these reasons for decision.
The hearing of this application took place over three days on 8 and 9 November 2017 and 15 December 2017. At the hearing, Ms Angie Wong of counsel appeared on behalf of the Applicant and Ms Kathleen Foley of counsel appeared on behalf of the NDIA.
The Applicant called the following witnesses to give evidence at the hearing:
(a)her mother’s psychologist;
(b)her father;
(c)a Divisional general manager the Applicant’s current care agency;
(d)the Applicant’s paediatric neurologist based at the RCH;
(e)one of the Applicant’s current support carers;
(f)the Applicant’s treating general paediatrician; and
(g)the Applicant’s current music therapist.
The Applicant filed closing submissions on 4 January 2018 (AC Submissions). The Respondent filed closing submissions on 12 January 2018 (RC Submissions). The Applicant filed a reply to the RC Submissions on 22 January 2018 (AC Submissions in Reply).
The Applicant previously sought review by this Tribunal of the statement of participant supports in one of the Applicant’s earlier NDIS plans. In the decision of PNMJ and National Disability Insurance Agency [2015] AATA 866 (PNMJ) the Tribunal, constituted by two members, found that funding for year-round 24/7 care for the Applicant was a reasonable and necessary support under s 34 of the Act. The Tribunal varied the statement of participant supports to include year-round 24/7 care and decided in effect that this support was to be funded for a period of six months from the date of the Tribunal’s decision. While this Tribunal is not bound to that previous decision, it has closely reviewed the reasons for decision in PNMJ.
Following the decision in PNMJ, the NDIA reduced the number of carer hours in a subsequent NDIS plan for the Applicant to 16/7 care for 39 weeks of the year and 24/7 care for the remaining 13 weeks of the year. In the most recent plan for the Applicant, the NDIA approved, as “core supports” for the Applicant, year-round 16/7 care and eight days of short-term accommodation for the Applicant per month.[2]
BACKGROUND
[2] Refer to paragraph [101] to [106] which describes why the structure of this particular support changed following the hearing before this Tribunal.
The Applicant’s medical conditions
The Applicant is a five year old girl who has been diagnosed with the following conditions:[3]
[3] Refer Exhibit “A7” – letter from the Applicant’s treating paediatrician dated 27 September 2017.
(a)infantile epileptic encephalopathy;
(b)intractable epilepsy;
(c)global developmental delay;
(d)hypermetropia (long-sighted);
(e)nystagmoid movements;
(f)cortical vision impairment;
(g)hearing impairment;
(h)hypotonia (low muscle tone) and dystonia;
(i)percutaneous endoscopic gastrostomy (PEG) and jejunostomy (PEJ);
(j)gastro-oesophageal reflux disease/reflux – the Applicant is susceptible to inhaling stomach contents (aspiration) as she also has an impaired swallow reflex;
(k)laryngomalacia (throat abnormality resulting in airways obstruction);
(l)small capillary heamangioma on right hip;
(m)constipation/anal fissures;
(n)cholesteatoma – right ear (with severe hearing loss in the right ear);
(o)recurrent atypical pneumonia;
(p)scoliosis; and
(q)oxygen desaturation during sleep (low respiratory reserve).
These conditions have been present since the Applicant was born, or shortly thereafter, and have significantly impacted upon her. The Applicant has frequent seizures every day, sometimes requiring medication. She is unable to walk, stand, sit independently or move her limbs to any great or controlled extent without assistance. Her vision and hearing is impaired and her communication is greatly hampered.
To help prevent the risk of aspiration, the Applicant is fed through a PEJ tube in her stomach, which has a PEG for venting and medications. It is sometimes necessary to administer oxygen to the Applicant and her oxygen levels and pulse must be monitored. The Applicant has gastric reflux and coordination problems with chewing and swallowing. At the time of the hearing, the Applicant weighed approximately 22 kilograms.
It was not in dispute between the parties that since her birth, the Applicant has complex and high care needs.
The Applicant’s family situation
The Applicant has two parents and an older sister aged nine (who I will refer to as the Mother, Father and Sister). The family live in Geelong, Victoria; in a home which was recently purpose-built by the family, using (in part) funding provided under the NDIS, to provide greater ease for the day to day care of the Applicant (including, for instance, the installation of ceiling hoists and ramps and a separate unit annexed to the house to accommodate the Applicant).
The Applicant’s family situation is complex.
The Mother is an NDIS participant who suffers from a significant long-standing mental health condition (bipolar adjustment disorder) that fluctuates and requires careful medical and environmental management to minimise the impact of this condition upon her and her family. The core support in the Mother’s NDIS plan is the provision for funding for six hours per week of cleaning and household activities to achieve the Mother’s first goal of maintaining her mental health by reducing her stress to allow time for her university studies and her children.[4]
[4] Refer Exhibit “A15” - the Mother’s NDIS Plan commencing 6 December 2017.
It was contended that the Mother’s mental health condition prevents her from providing independent care to the Applicant; however, she is able to interact with the Applicant as a parent. Essentially, it was contended that her role has been limited to spending time with and playing with the Applicant.
The Father has been the primary family care giver for the Applicant, alongside the Applicant’s current professional support carers. He has been diagnosed with depression with the symptoms being managed by appropriate medication. The Father also provides regular care and support to the Mother with respect to her mental health condition during the times that it becomes symptomatic and impact upon her.
The Father and Mother share the parenting and care for the Sister, who does not have any diagnosed medical conditions impacting upon her, although reference was made in the evidence to more recent concerns arising in relation to her psychological and emotional wellbeing.
The Applicant has grandparents who also live in the Geelong area (Grandparents). The evidence suggests that they do not take an active role in the physical care of the Applicant. However, they spend time with the Applicant and more so, the Sister who occasionally stayed overnight with the Grandparents.
The Applicant’s history as a NDIS participant
The Applicant commenced as a NDIS participant on 11 July 2013. Since that time, a number of NDIS plans have been approved for the Applicant describing her goals; the range of supports to be provided to the Applicant; and the approved level of funding for each.
On 1 December 2016, the NDIS approved a plan for the Applicant which contained the approved statement of participant supports under review in this application (December 2016 Plan)[5].
[5] Refer T-Document T43/243 & 244; and 245 - 251 – the scheduled date for review of this plan was 1 December 2017.
A request was made on behalf of the Applicant that the CEO of the NDIA conduct an internal review under s 100 of the Act of the decision to approve the statement of participant supports included in the December 2016 Plan. As part of that internal review, as relevant to this application, the Applicant sought the supports listed in paragraph [3].

The NDIA completed its internal review and made a decision on 13 June 2017 (Internal Review Decision). The outcome of this review in relation to the four supports in dispute is set out below:[6]
(a)Carer Support – no change – affirmed earlier NDIA decision providing for 16/7 care for 39 weeks per year and 24/7 care for 13 weeks per year;
(b)Top Up Carer Training Support – no change – affirmed decision not to approve this support;
(c)Back-up Nursing Support – no change – affirmed decision not to approve this support; and
(d)Music Therapy – partial change – decision varied to this support by adding eight hours of therapy to the Capacity Building Daily Activities budget (specialised individual therapy for early childhood) which the Applicant was at liberty to use to fund additional music therapy.
[6] Refer T-Documents T1/T2.
On 14 June 2017, the Applicant sought review of the Internal Review Decision by this Tribunal under s 103 of the Act.
Since then, the Applicant’s December 2016 Plan has been replaced by a number of subsequent NDIS plans. There is a detailed description given below in paragraph [70] about the evolution of the Applicant’s plans.
ISSUES
Substantively, this application raises for consideration whether each of the four proposed supports (or increased level of supports), as listed in paragraphs [3], should be included in the statement of participant supports in the December 2016 Plan, following a consideration of the factors set out in subsection 33(5) of the Act (see paragraph [40]), which includes that the Tribunal is satisfied that those proposed additional or increased supports meet the “reasonable and necessary supports” requirement under s 34 of the Act.
This application also raises for consideration a preliminary jurisdictional issue about whether any decision made by this Tribunal would have current effect or operation. This will require a consideration by the Tribunal as to whether its decision will have the effect of enlivening the December 2016 Plan, to allow for the Applicant to access funding at the current time and into the future (until that plan is replaced by another) for the provision of the supports which this Tribunal concludes should be included in the approved statement of participant supports.
LEGISLATIVE FRAMEWORK
The NDIS was established under the Act. Persons with disabilities may apply to become a participant in the scheme, subject to certain eligibility requirements.
A NDIS participant’s plan is prepared in accordance with the Act and regulations made under s 32A of the Act. The supports described in the plan must be approved by the NDIA in accordance with the Act and regulations made under it.
Section 31 of the Act establishes a set of general principles that apply to the “preparation, review and replacement” of a NDIS participant’s plan as reproduced below. These principles have been considered by the Tribunal in making this decision:
31       Principles relating to plans
The preparation, review and replacement of a participant’s plan, and the management of the funding for supports under a participant’s plan, should so far as reasonably practicable:
(a) be individualised; and
(b) be directed by the participant; and
(c)   where relevant, consider and respect the role of family, carers and other persons who are significant in the life of the participant; and
(d) where possible, strengthen and build capacity of families and carers to support participants who are children; and
(da)if the participant and the participant’s carer agree – strengthen and build the capacity of families and carers to support the participant in adult life; and
(e) consider the availability to the participant of informal support and other support services generally available to any person in the community; and
(f)    support communities to respond to the individual goals and needs of participants; and
(g) be underpinned by the right of the participant to exercise control over his or her own life; and
(h) advance the inclusion and participation in the community of the participant with the aim of achieving his or her individual aspirations; and
(i)    maximise the choice and independence of the participant; and
(j)    facilitate tailored and flexible responses to the individual goals and needs of the participant; and
(k)   provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability services where there is more than one disability service provider.
Section 33 of the Act sets out certain matters that must be included in a participant’s plan, including the participant’s statement of goals and aspirations (subsection 33(1)) and a statement of participant supports (subsection 33(2)). The statement of participant supports is prepared with the participant and approved by the CEO of the NDIA, and in accordance with subsection 33(2) as detailed in paragraph [61].
Subsection 33(5) of the Act requires that the CEO, in deciding whether or not to approve the statement of participant supports under subsection 33(2), must;
(a)have regard to the participant’s statement of goals and aspirations;
(b)have regard to relevant assessments conducted in relation to the participant;
(c)be satisfied as mentioned in s 34 of the Act in relation to the reasonable and necessary supports that will be funded and the general supports that will be provided;
(d)apply any methods and have regard to any criteria prescribed by the NDIS rules in relation to the manner in which the reasonable and necessary supports will be funded;
(e)have regard to the principle that a participant should manage his or her plan to the extent that he or she wishes to do so; and
(f)have regard to the operation and effectiveness of any previous plans of the participant.
Section 34(1) of the Act provides as follows (emphasis added):
For the purposes of specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded, the CEO must be satisfied of all of the following in relation to the funding or provision of each such support:
(a) the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations;
(b)the support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
(c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and community to provide;
(f)the support is most appropriately funded or provided through the [NDIS], and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i) as part of a universal service obligation; or
(ii)in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
Section 35 of the Act allows for NDIS rules to be prescribed establishing a method for assessing, or the criteria for deciding, the reasonable and necessary supports or general supports that will be funded or provided,[7] or for declaring particular reasonable and necessary supports or general supports that will or will not be provided or funded, either generally or for prescribed participants.[8]
[7] Refer to subsection 35(1)(a) of the Act.
[8] Refer to subsections 35(1)(b) and (c) of the Act.
Rules have been prescribed and are in force, being the National Disability Insurance Scheme (Supports for Participants) Rules 2013 (Cth) (Rules). Section 33(5)(d) of the Act requires that those Rules be applied in the making of a decision to approve a statement of participant supports. Schedule 1 of the Rules requires the CEO of the NDIA to have regard to certain matters in relation to reaching a state of satisfaction with respect to subsection 34(1)(f), namely that supports are appropriately funded or provided under the NDIS.
The NDIA provided the Tribunal with an extract from its internal operational guidelines, namely, Operational Guidelines – Planning (Chapter 10) (Guidelines) which guides delegates of the CEO of the NDIA in reaching the requisite state of satisfaction under s 34 of the Act in relation to the statement of participant supports. The Tribunal was also provided with a document which was said to be Appendix 1 to the Guidelines.[9] The Tribunal considers it appropriate to consider those Guidelines and act consistently with them, unless there are good reasons not to or unless the Tribunal considers them to be inconsistent with the legislative regime – see Re Drake and Minister for Immigration and Ethnic Affairs (No.2)(1979) 2 ALD 634.
[9] The Guidelines were accessible on the NDIA website; however, Appendix 1 did not seem to be accessible on the NDIA website.
Subsection 37(2) provides that a participant’s plan cannot be varied after it comes into effect, but it can be replaced under Division 4 of the Act.
The plan ceases to be in effect when it is replaced by another plan under Division 4 or when the participant ceases to be a participant, whichever occurs first – see subsection 37(3) of the Act.
JURISDICTIONAL ISSUE
As the Applicant’s December 2016 Plan has been replaced by subsequent NDIS plans, by operation of s 37(3) of the Act, the December 2016 Plan ceased to be in effect as from 3 February 2017.
At the hearing, the effect of this provision was addressed, specifically, whether it meant that any decision made by the Tribunal in relation to the December 2016 Plan would have no practical effect or operation with respect to funding the provision of supports for the Applicant at the current time and going forward.
The NDIA proffered an undertaking to the effect that if this Tribunal found that additional or increased supports for the Applicant were reasonable and necessary under s 34 of the Act, the NDIA would be prepared to adopt such findings by incorporating those supports in a new plan for the Applicant, which it would put in place immediately following any such findings by this Tribunal.
This jurisdictional issue has arisen in other applications before the National Disability Insurance Scheme Division of this Tribunal for a review of statements of participant supports under NDIS plans. It is often the case, as in this application, that by the time the application for review by this Tribunal has been heard and finalised, the NDIS plan containing the statement of participant supports at issue has been replaced by a new plan.
I have closely considered recent decisions by other members of the Tribunal concerning or touching upon this issue, including the decisions in Re SSBV and National Disability Insurance Agency [2017] AATA 2174, LNMT and Re National Disability Insurance Agency [2018] AATA 431, Re SHGH and National Disability Insurance Agency [2018] AATA 674, Re FJKH and National Disability Insurance Agency [2018] AATA 1294 and PNMJ.
It is commendable that the NDIA has sought to deal with this jurisdictional challenge in a pragmatic way by proffering the undertaking referred to in paragraph [49]. However, upon close examination it appears that this is not necessary. For the reasons expanded upon below, I consider that the previous December 2016 Plan, containing the statement of participant supports under review, is enlivened when the Tribunal makes its decision upon review and the enlivened plan (and the approved statement of participant supports within it) will have current operation and continue into the future, until replaced by another NDIS plan.
Under section 103 of the Act, this Tribunal has the power to review a decision made by a reviewer under subsection 100(6) of the Act.
Subsection 43(1) of the Administrative Appeals Tribunal Act 1975 (Cth) (AAT Act) provides that for the purpose of reviewing a decision, the Tribunal may exercise all the powers and discretions that are conferred by any relevant enactment on the person who made the decision; and shall make a decision in writing affirming, varying or setting aside the decision under review and if the latter, make a decision in substitution or remitting the matter for reconsideration in accordance with any directions or recommendations of the Tribunal. A short-hand way of putting this is that the Tribunal will stand in the shoes of the decision-maker who made the decision under review.
This requires the Tribunal to identify the powers and discretions conferred on the reviewer. The reviewer derives their power under subsection 100(6) of the Act. Under this provision, the reviewer is required to make a decision confirming, varying or setting aside the reviewable decision, and in the latter case, to substitute it for a new decision. The effect of subsection 43(1) of the AAT Act is that the Tribunal may also exercise such power.
Section 99(d) of the Act sets out that a decision under s 33(2) of the Act, to approve the statement of participant supports in a participant’s plan, is a reviewable decision. Consequently, in this application, the reviewable decision the reviewer was reviewing under subsection 100(6) of the Act was the decision made on 1 December 2016 by the delegate of CEO of the NDIA to approve a statement of participant supports for the December 2016 Plan.[10]
[10] Refer T-Documents T43.
Under subsection 37(1) of the Act, a participant’s plan comes into effect when the CEO has received the participant’s statement of goals and aspirations and approved the statement of participant’s supports.
When this Tribunal makes its decision in this application, standing the shoes of the reviewer, the effect of it will be to approve the statement of participant supports forming part of the December 2016 Plan. It follows then, by force of s 37(1) of the Act, that the Applicant’s December 2016 Plan containing the (newly) approved statement of participant supports, will come into effect. The second and only other requirement under s 37(1) of the Act has already been met, namely, that the CEO has received the participant’s statement of goals and aspirations.[11]
[11] Refer paragraph [74] of these reasons for decision.
The intention of Parliament for the Tribunal’s decisions to have such an effect is consistent with subsections 43(5A), (5B) and (6) of the AAT Act which provide as follows:
Section 43
…
(5A)     Subject to subsection (5B), a decision of the Tribunal comes into operation forthwith upon the giving of the decision.
(5B)     The Tribunal may specify in a decision that the decision is not to come into operation until a later date specified in the decision and, where a later date is so specified, the decision comes into operation on that date.
…
(6)       A decision of a person as varied by the Tribunal, or a decision made by the Tribunal in substitution for the decision of a person, shall, for all purposes (other than the purposes of applications to the Tribunal for a review or of appeals in accordance with section 44), be deemed to be a decision of that person and, upon the coming into operation of the decision of the Tribunal, unless the Tribunal otherwise orders, has effect, or shall be deemed to have had effect, on and from the day on which the decision under review has or had effect.
Given that the December 2016 Plan will be enlivened by the decision of this Tribunal on the date this Tribunal makes its decision, it will be necessary for the Tribunal to extend the review date of the December 2016 Plan (the review date is presently 1 December 2017 which has since passed), to a date into the future that the Tribunal considers appropriate depending on the circumstances. I have dealt with this issue at paragraph [249] of these reasons for decision.
I consider the Tribunal has the power to extend the review date as it is one of the five mandatory matters that a statement of participant supports must have specified in it under s 33(2) of the Act. Section 33(2) of the Act provides that a participant’s plan must include a statement of participant supports that specifies five different matters (not only the list of supports), including:
(a)the general supports (if any) that will be provided to, or in relation to, the participant;
(b)the reasonable and necessary supports (if any) that will be funded under the NDIS;
(c)the date by which, or the circumstances in which, the Agency must review the plan under Division 4;
(d)the management of the funding for supports under the plan; and
(e)the management of all other aspects of the plan.
It is the approval of statement of participant supports and by extension, the matters contained within that statement (which includes the review date), that is at the heart of a review before the Tribunal in an application such as this.
If a decision of the Tribunal is made which has the effect of approving the Applicant’s statement of participant supports as referred to above and this causes the December 2016 Plan to come into effect by operation of s 37(1) of the Act, the plan will commence operation and continue to operate until it is replaced by a subsequent NDIS plan. Upon doing so, I consider that the Current Plan, in force as at the date of this Tribunal’s decision being made, will cease to have effect.
Based on my interpretation of the provisions of the Act and the Tribunal’s powers under the AAT Act as set out above, in practical terms, the consequence of the review process will be that the Applicant has current approval to access the supports that the Tribunal considers to be reasonable and necessary supports, until such time as the Applicant’s enlivened plan is replaced by a subsequent NDIS plan at some point in the future.
I consider that this approach is consistent with Parliament’s decision to establish a merits review process before the Tribunal in relation to certain decisions concerning the administration of the NDIS. Specifically, Parliament must have intended for the parties to an NDIS plan to have access to a way of resolving disputes between them about supports for the Applicant in a meaningful way, by presently them with a review process that delivers at the end of it, a decision that the Applicant may rely upon to enable him or her to receive funding now and going forward, for the supports ultimately approved by the Tribunal. By contrast, a resolution which is purely historical about what should have been approved and provided to the Applicant as reasonable and necessary supports at some earlier point in time (but the time has since passed for the Applicant to access those supports), would serve little or no benefit to the parties and is likely to lead to frustration.
MEDICAL EVIDENCE
Given the complexity and severity of the Applicant’s medical conditions, she has been treated by many medical specialists and therapists since her birth. The Tribunal has reviewed the available medical evidence as required by s 33(5)(b) of the Act, and in particular, notes the opinions and observations of the following doctors:[12]
[12] Refer Exhibit “R2”.
(a)Doctor One, paediatric neurologist, issued a report about the Applicant on 19 August 2013, stating as follows:[13]
[13] The various medical practitioners have been referenced in these reasons for decision by calling them Doctor One, Doctor Two etc. in response to a request by the Applicant’s parents that they remain anonymous.
[The Applicant’s] epilepsy probably began on day four when she had 2 staring episodes where her eyes elevated and were fixed for about 40 seconds. There was no colour change and she was still. She had notably increased tone and was agitated for up to 15 hours per day. A further 10 second staring episode occurred at 6.5 weeks. Epilepsy was diagnosed at 7.5 weeks when [the Applicant] presented with afebrile left sided clonic seizures lasting up to one minute. She did not have right sided seizures. These sometimes evolved to generalised tonic seizures. Hemiclonic seizures were only present for one month.
[The Applicant] developed tonic seizures at around 7.5 weeks which continue to occur 6-12 times per day lasting 3-5 minutes. The longest was 12 minutes but this included a period of staring towards the end. These occur both awake and asleep and she will be irritable for 30-60 minutes prior to the attack. The seizures are characterised by her eyes opening and deviating to either side or sometimes showing nystagmus. Her limbs can stiffen in an extended or flexed posture and sometimes she adopts an asymmetric tonic posture to either side. She may be pale or cyanosed.
At four months, [the Applicant] developed myoclonic jerks that occurred all day and she would have 80-120 per day. They tended to increase in clusters with 12 over 20 minutes on drowsing and sometimes they built up to a tonic seizure.
…
Absence seizures occur 5 times per day and last 30 seconds, her eyes elevate and there is no colour change. … She has never had a tonic clonic seizure.
…
Her seizures were at their worse at 8 months when she required resuscitation in the context of upper respiratory tract difficulties. In July this year they were worse as well requiring midazolam on 5 occasions.
…
(b)Doctor Two, a consultant, respiratory medicine, based at the RCH, in a letter dated 17 November 2017, stated as follows:[14]
[14] Refer Exhibit “A13”.
[The Applicant] has severe respiratory difficulties that make her particularly vulnerable to coughs and colds. She has had many episodes of pneumonia and chest infections in the past which have often been triggered by viruses/colds. As such, she should avoid ALL contact with unwell individuals and strict hand hygiene should be used at all times.
Cold or viral symptoms may include: cough, runny nose, fever/temperature, chills, vomiting, diarrhoea or sore throat. Individuals who have had such symptoms in the previous 24 hours should avoid contact with [the Applicant].
(c)Doctor Three, paediatric neurologist, who first saw the Applicant in 2012, provided a letter to the Applicant’s representatives dated 19 October 2017. Doctor Three stated as follows (emphasis added):[15]
[15] Refer Exhibit “A11”.
…Inpatient monitoring during her admissions confirmed a diagnosis of epilepsy…
…[The Applicant] has an undiagnosed neurological disorder despite an extensive work up which has included video-EEG monitoring, brain imaging, and testing for rare genetic and metabolic disorders. She has multiple neurological problems which include uncontrolled seizures global developmental delay, cortical visual and hearing impairment, and a mixed hypotonic dyskinetic movement disorder.
…[The Applicant] has uncontrolled seizures which have failed to respond to virtually every available anticonvulsant medication, and alternative medical therapies such as the ketogenic diet and medicinal cannabis. She is currently on three anticonvulsant medications for her seizures. Despite having uncontrolled seizures, her epilepsy has, in fact, been quite stable for well over twelve months. Her parents are very experienced in managing her epilepsy… There has been a reduction in need for rescue medications to stop prolonged seizures which is further evidence of the fact that her seizures are stable.
[The Applicant] has a movement disorder which consists of hypotonia (low muscle tone) but she has additional involuntary movements which we refer to as dyskinetic chorea… The medications trialled for her movement disorder were also ineffective.
[The Applicant] has cortical visual impairment which means that her brain does not process visual information. Once again this is a stable problem.
…
[The Applicant] most definitely requires monitoring 24 hours a day because of the complexity of her medical conditions. In particular, her seizures place her at risk of airway obstruction and require intervention if they last more than 5 minutes.
…
It would be inappropriate for [the Applicant] to be left unsupervised for several minutes because of the risk of seizures for reasons explained [above]. Monitoring devices for detection of seizures are generally ineffective.
…
I have no doubt that [the Applicant] will require ongoing monitoring for more than five years (and for her entire life) given the severity and complexity of her medical condition.
(d)Doctor Four, the Applicant’s treating paediatrician, who has treated the Applicant since her birth, provided a letter to the Applicant’s representatives dated 27 September 2017.[16] Doctor Four stated as follows (emphasis added):
[16] Refer Exhibit “A7”.
[The Applicant] has not had a period of 24 hours without a seizure in her life and averages 6 to 12 seizures greater than 1 minute in 24 hours. She can have up to 36 seizures lasting greater than 1 minute. Her average length of seizure is 5 minutes. The longest seizure she had had lasted 45 minutes. [The Applicant] also has greater than 100 myoclonic jolts a day and at least 12 seizures less than 1 minute per day. It is likely that [the Applicant] will continue to have a similar pattern of seizures for her life given it has been unchanged to date with all known antiepileptics. This is known as intractable or unstable epilepsy. If a patient has failed to respond to the first 3 antiepileptics it is unlikely that any other medications will be successful. [the Applicant] has not responded to 15 antiepileptics.
…
[The Applicant] cannot support her own body and requires support in all positions. She cannot sit independently, walk, grasp items or eat. Her tone is improving in small ways, e.g. holding her head up has increased over the past year from 30 seconds to several minutes. [The Applicant] has had very small gains with her body tone but it is likely to be an issue for life and she is likely to require full supportive equipment and carers to enable her to do everything.
[The Applicant’s] lack of body control means that she cannot correct her body position if she is slumped in a chair or slumped in bed. She cannot coordinate her hands to play. She cannot move her position if she is uncomfortable. She cannot roll in bed. She requires a support carer to enable her to move or to do anything. There are safety elements that if she unobserved and is in a compromised airway position which she cannot move herself from she is a risk of asphyxiation and potential brain injury. Constant vigilant carers are required to ensure safety.
…
In your opinion does [the Applicant] need 24 hr monitoring
Yes, she is at risk of further brain damage or death without it. She has a minimum of 4-5 seizures per week with high vulnerability and many more seizures that could see her positioning compromise her airway. A seizure lasting 5 minutes or longer (known as status epilepticus) is a medical emergency. Time and judgement of the type of seizure is important for intervention.
Is [the Applicant] safe unobserved for a few minutes in a wheelchair or bed?
She could potentially be having a seizure during this time and this could be life threatening if missed or not timed. She could obstruct her airway with her head flop. She could also be regurgitating and aspirating that repositioning would minimise. The seizure management plan for [the Applicant] states to observe when seizure starts – that is the plan doesn’t start at 5 minutes there is preparation and timing. Positioning is adjusted, oxygen is applied at 3 minutes and midazolam is drawn up ready. This all takes time and a second person would be valuable for example to lift to the floor from the wheelchair or if an ambulance is called.

Doctor Four also gave evidence at the hearing and stated that the Applicant had unstable or intractable epilepsy and that meant that despite everyone’s best efforts and trying different medications, the Applicant had continuing seizures and was still on anti-convulsants. The doctor stated:
From my point of view the last 12 to 24 months has been a similar theme and types of seizures and numbers …
The Tribunal notes the Applicant’s Care Manual which was produced by the Complex Care Hub at the RCH (Care Manual).[17] The RCH website states that the Complex Care Hub is a multidisciplinary team that supports the care of children across the state with chronic complex needs. The Complex Care Hub was formerly known as the Family Choices Program.
[17] Exhibit “A12”.
This Care Manual provides an indication of the significant aspects of physical care that the Applicant requires from its carers on a day to day basis, including:
(a)the specific care that is required by the Applicant when she experiences absent seizures, tonic seizures, repetitive tongue chewing, myoclonic body jerks/jolts, infantile spasms or becomes atonic;
(b)the emergency plan for all seizures lasting five minutes. Emergency seizure medication is required to be administered if the Applicant is non responsive at five minutes of seizure and oxygen to the Applicant is to be maintained;
(c)monitoring instructions;
(d)instructions as to what information should be given to the ambulance if the Applicant’s parents are not home;
(e)instructions for the feeding, handling and cleaning of the gastro-jejunal tube;
(f)instructions to monitor the Applicant’s breathing and pulse, monitor oxygen levels and apply oxygen when required and to employ oral or nasal suctioning when the Applicant is unable to clear secretions independently by coughing;
(g)instructions for mobility and hygiene care; and
(h)safety checklist required to be completed by the carer at the beginning of each shift, before the Applicant’s parents or caregivers leave the home and also at the end of each shift.
EVOLUTION OF THE NDIA’S POSITION WITH RESPECT TO THE SUPPORTS IN DISPUTE
The following table summarises the approved funding in the Applicant’s NDIS plans over time for the particular supports in dispute as part of this application:

*NDIS Plan Period*[18]	*Carer Support*	*Top Up Carer Training Support*	*Back-up Nursing Support*	*Music Therapy Support*
4 Nov 2013 to 6 Oct 2014 (version printed as at 23 May 2014)[19]	76 hours per week for the provision of assistance with self-care comprising: 20 hours during daytime weekdays; 40 hours for night time sleepovers; 8 hours per week for Saturday activities; and 8 hours per week for Sunday activities	Not included	Not included	No specific provision for music therapy
4 Nov 2013 to 3 Nov 2014 (version printed as at 8 Sept 2014)[20]	3,216 hours per year (equivalent to average of approximately 62 hours* per week)*	Not included	Not included	No specific provision for music therapy
Exchange of correspondence between NDIA and Father seeking increase in hours of carer support – refer paragraphs [77] and [78].
4 Nov 2013 to 3 Nov 2014 (version printed as at 10 Oct 2014)[21]	3,216 hours per year (equivalent to approx. 62 hours* per week) plus a one off allocation for the period 8 Oct 2014 to 3 Nov 2014 of a further 648 hours)*	Not included	Not included	No specific provision for music therapy
4 Nov 2014 to 1 Nov 2015 (version printed as at 10 Nov 2014)[22]	3,549 hours per year (but as part of a total care package with provision of 136 hours per week* of care for 6 months).*	Not included	8 hours per week to be funded through NDIS	No specific provision for music therapy
4 Nov 2014 to 1 Nov 2015 (version printed as at 15 April 2015)[23]	As above - 136 hours per week.	Not included	8 hours per week to be funded through NDIS	No specific provision for music therapy
4 Nov 2014 to 1 Nov 2015 (version printed as at 29 April 2015)[24]	As above – 136 hours per week.	Not included	8 hours per week to be funded through NDIS	No specific provision for music therapy
4 Nov 2014 to 1 Nov 2015 (version printed as at 13 May 2015)[25]	As above – 136 hours per week.	$4,607.40 for Barwon Health to provide training to 3 additional carers[26]	8 hours per week to be funded through NDIS	No specific provision for music therapy
*On 11 November 2015, the Tribunal, in PNMJ, made a decision which had the effect of approving funding for 24/7 care (168 hours per week) for six months.*
11 May 2016 to 10 Nov 2016[27]	168 hours per week including provision for shadow shifts and training with specialists and activities to support provision of services	Included within core supports	Not included	13 hours per year
25 Nov 2016 to 27 Nov 2017[28]	Approximately 109 hours per week.[29]	Not included	Not included	12 hours per year
1 Dec 2016 to 1 Dec 2017 (December 2016 Plan)[30]	Assistance with self-care 24 hours a day, 7 days a week for 13 weeks, 16 hours a day, 7 days a week for 39 weeks including Saturdays, Sundays and 20 shadow shifts	Not included	Not included	12 hours per year
3 Feb 2017 to 4 Dec 2017 (approved on 3 Feb 2017)[31]	As above – 16/7 care for 39 weeks and 24/7 care for 13 weeks. Boost4Kids 3 weekends per year.	Not included	Not included	12 hours per year
7 Aug 2017 to 6 Sept 2017 (approved on 7 Aug 2017)[32]	As above – 16/7 care for 39 weeks and 24/7 care for 13 weeks. Boost4Kids – 3 weekends per year.	Not included	Not included	Remaining funding from previous plan and additional funding for 8 hours - to be used for range of therapies including music therapy.
6 Dec 2017 to 7 March 2018[33]	Assistance with self-care 16 hours a day includes Saturday and Sundays and public holiday rates and 8 nights of short term accommodation per month.	Not included	Not included	Global funding approved for $17,540.08 for “Provision of therapy services across all environments; with therapists to work in collaboration to support family to implement strategies to assist in meeting goals as per the plan including support to staff where required…”
2 March 2018 to 2 May 2018[34]	Assistance with self-care 16 hours a day includes Saturday and Sundays and public holiday rates and 8 nights of short term accommodation per month.	Not included	Not included	Global funding approved for $11,693.39 as above.
3 May 2018 to 3 July 2018 (Current Plan)[35]	Assistance with self-care 16 hours a day, includes Saturday and Sundays and public holiday rates and 8 nights of short term accommodation per month.	Not included	Not Included	Global funding approved for $11,693.39 as above.

[18] The reference to NDIS Plan Period means the notional period from the date of commencement of the plan until the review date for plan. This period is notional because the plan may not necessarily operate for this entire period, if the plan is replaced by a new plan prior to the review date.

[19] Refer Reissued T-Documents T65 & T66.

[20] Refer Reissued T-Documents T81.

[21] Refer Reissued T-Documents T93.

[22] Refer Reissued T-Documents T98.

[23] Refer Reissued T-Documents T130.

[24] Refer Reissued T-Documents T134.

[25] Refer Reissued T-Documents T137.

[26] This funding was available only after the limit for training carers under the RCH Family Choice program had been exceeded.

[27] Refer T-Documents T45.

[28] Refer T-Documents T44.

[29] NDIA also approved funding for specialised support coordination for 6 months and for the following 6 months, standard support coordination.

[30] Refer T-Documents T43.

[31] Refer T-Documents T42.

[32] Refer Exhibit “A8”.

[33] Refer Exhibit “A14”.

[34] Lodged with the Tribunal on 1 April 2018.

[35] Lodged with the Tribunal on 21 May 2018.

The Tribunal notes that on 16 April 2015, the NDIA provided a letter to the Father following an internal review process as requested by the Applicant in which the NDIA delegate stated:[36]
There are 168 hours in a week. [The Applicant’s] approved plan includes 136 hours per week of funded care for 6 months. Considered the NDIS Operational Rules it is regarded as reasonable for [the Applicant’s] informal supports to provide care for her for the remaining 32 hours per week. The funded hours are flexible so you can use the supports as best suit [the Applicant’s] and your needs. I uphold the decision for the support hours to be reviewed within 6 months. This gives time for the establishment of interventions and the identification of reasonable family, carer and other supports. This also gives time for you as [the Applicant’s] primary carers to implement other supports to contribute to sustaining her informal support. NDIA consider it best practice to monitor intensive supports over periods of 3 to 6 months to ensure that we can proactively respond to evidenced participant needs.
[36] Refer Reissued T-Documents T131.
CONSIDERATION OF APPLICANT’S ENTIRE SET OF SUPPORTS
In making this decision, the Tribunal has considered the Applicant’s entire program of approved supports as listed in the statement of participant supports in her December 2016 Plan as follows:
(a)Informal supports: Mother, Father, Sister and the Applicant’s grandparents, although it was noted there was a limitation on the support the grandparents were able to provide due to the specialist care needs of the Applicant.
(b)Community and mainstream supports: the Royal Children’s Hospital clinics including dental clinic, neurology, ophthalmology, gastroenterology, metabolics, palliative care, genetics; HEN program, Barwon Health for support and monitoring of PEG feeding and provision of equipment; various other private medical specialists, Very Special Kids support group; community based church, the Family Choice Program at the RCH to provide training to a certain number carers each year.
(c)NDIS reasonable and necessary supports’ budgets (total $486,106.33):
(i)Support Coordination - $20,891.52
6 months of Specialised Support Coordination (78 hours) and 6 months of Support Coordination to assist family to manage the NDIS plan;
(ii)Assistive technology - $18,370
Includes manual wheelchair, communication device, review of sling, walker review of bed, floor seating, vision equipment and AFP and orthotic shoes;
(iii)Home modifications - $82,433.50
Project management of NDIS funded home mods re: home build. 15 hours at $140. I/R homebuild - additional sqmtr bedrm 16 sq, Ensuite 6sq, garage 10 sq, total: $45,500. Kitchen living dining, 9.6sqm $16,800. ensuite long shower hose, vanity, toilet and wall htr. total $2575. Difference between std insulation and sound deadening $1681.47, steel str $9900, thremostat mix valve $300, difference btw 5 wider std door $1350, ent level ramp $3151, vis monitoring system, $1760, spec. light cost $5065.50, bedroom ent lvl cool $2450
(iv)Improved life choices - $1,443.75
Financial intermediary monthly processing
(v)Improved daily living - $31,778.17
Occupational therapy, physiotherapy and speech therapy - 120 hours per year.
Music therapy - 12 hours per year
Orthotics - 6 hours per year
Continence assessment - 3 hours per year
Counselling - 40 hours per year
(vi)Core supports - $331,189.39
Continence package - $3,550.00
Assistance with self-care 24 hours a day, 7 days a week for 13 weeks, 16 hours a day, 7 days a week for 39 weeks. Including Saturdays, Sundays and public holiday reates. Includes 20 shadow shifts.
Boost4Kids, 3 weekends per year.
The Tribunal has also taken account of the Applicant’s entire program of supports in her Current Plan that commenced on 2 May 2018. The Applicant’s informal, community and mainstream supports described in the Applicant’s Current Plan remain much the same as in the December 2016 Plan. The reasonable and necessary supports in the Current Plan, for the two month period of that plan, included the following:
(a)Support coordination - $7,066.33 including specialised and standard support coordination;
(b)Assistive technology - $5,462.35;
(c)Improved daily living - $11,693.39 for the provision of therapy services across all environments; and
(d)Core supports - $90,487.55 for continence products, AT level 1 assistive technology products and 16/7 care plus eight nights of short term accommodation per month.
THE APPLICANT’S GOALS AND ASPIRATIONS
In the Applicant’s Current Plan, her goals were listed as follows:[37]
My First Goal is:
During this plan: [the Applicant’s parents] would like [the Applicant] to remain living at home with her family with adequate and appropriate supports to sustain the family and home environment.
My Second Goal is:
During the plan: [the Applicant’s parents] would like [the Applicant] to continue to learn through a range of therapies including vision and music.
My longer term goals and aspirations are:
Goal: [the Applicant’s parents] would like [the Applicant] to continue to build her communication skills so that others better understand her thoughts, wants and needs and she can express her own personality.
Relates to: Social and community activities.
CONSIDERATION
[37] Refer page 4 of the NDIS plan commencing 3 May 2018 lodged with the Tribunal on 21 May 2018.
Carer Support
This application requires the Tribunal to decide (among other matters) what level of funding for Carer Support for the Applicant should be provided under the NDIS.
Evolution of approved funding for Carer Support in previous NDIS plans
Up until September 2014, the NDIA approved funding for Carer Support for the Applicant to an equivalent of 76 hours per week. In September 2014, the NDIA reduced the approved funding for Carer Support to an equivalent of 62 hours per week.
The Father wrote to the NDIA on 9 October 2014 referring to a “reduction in funding with zero warning” and that the Mother had experienced “an acute flare up” requiring her to see her psychiatrist. The Father advised the NDIA that he had found it extremely stressful; it was hard to cope, sleep and concentrate; and that he had to take time off work to cover carer shifts and to care for his family.[38] At the time, the Father said the Applicant needed 24/7 care but 136 hours per week was the minimum that he considered would allow him to work full time and the Mother to study part time, as well as do “normal things like sleep, shower and dress every day”.
[38] Refer Reissued T-Documents pages 554 and 557.
In response, the NDIA made a decision that was recorded in an email to the Father on 9 October 2014 as follows:[39]
…
Going forward, in recognition of [the Mother’s] condition and to enable her to seek medical and clinical support to assist her in her caring role, NDIA will approve your request for 136 hours per week for a period of 6 months.
After 6 months it is intended that the funding will be scaled down as initially discussed with both at the plan review meeting last week.
[The Mother] commented that if she was able to get sleep at night, she would be able to better manage [the Applicant’s] care for periods of time throughout the day and what this looks like will be further discussed at the 3 month plan reviews throughout 2015.
[39] Refer Reissued T-Documents page 557.
Following the decision in PNMJ on 11 November 2015, the statement of participant supports in the Applicant’s plan provided the Applicant with funding for year-round 24/7 care (equivalent to 168 hours per week) for a period of six months.
Subsequently, the NDIA made a decision to reduce the approved funding for Carer Support in the Applicant’s plan approved on 25 November 2016, to an equivalent of 109 hours per week.
Shortly after, on 1 December 2016, the NDIA approved a new plan increasing this support again to 16/7 for 39 weeks per year and 24/7 for the remaining 13 weeks per year (and 20 shadow shifts).
Funding for Carer Support has remained at this level in the Applicant’s NDIS plans since 1 December 2016, until more recently when it was changed to year-round 16/7 care with an additional support of funding for short term accommodation for the Application for eight days per month – see paragraph [105].
Evidence given by the Father and the Mother
The Father is employed in the medical field; however, he is not a medical practitioner. The Father made a statement of lived experience in support of this application and also gave extensive evidence at the hearing. The Father stated as follows:
(a)he found it difficult to lift the Applicant by himself despite being fit and having received medical handling training through work to do so. Presently, he said he tended to lift the Applicant using the hoists and medical handling techniques or by doing an assisted lift with two people. He said the carers in the house tended to use the hoists and equipment. He said they had one carer who was strong enough to undertake the lifts unassisted, however, the other carers who were not as strong, were unable to do so;
(b)the amount of seizures the Applicant has had over the last two years had remained the same. He said the Applicant’s ability to interact with the environment and “us” had improved greatly, and she looked more alert now than she did two years ago;
(c)the Applicant used half a dozen slurred words. Otherwise, a Pragmatic Organisation Dynamic Display (PODD) book was used as a means for the Applicant to communicate. The Applicant started using the PODD book in its current form in 2017. It can take up to 15 minutes for the Applicant to answer a question about what she would like to do using the PODD book;
(d)in terms of the Applicant’s sleep routine, the Father described it as follows:
It has gotten a little bit better but she has no predicable sort of sleep routine. She has seizures any time of the day or night and seizures take a toll on her physically, can tire her out, they can also wake her from sleep so really her seizure states will dictate if she’s had a bad night of seizures with several waking’s throughout the night, or if they are significant seizures and fatigue her then the next day she may need to sleep during the day and we just have to let her sleep, or she might be extremely fatigued and just her energy levels are down. So, pretty much her seizures set her sleep routine.
(e)when caring for the Applicant at night, the carer is required to do the following: monitor her seizures; prepare one bag of feed, clean out lines and re-hook her to the feed; reposition the applicant as she is unable to move; undertake some paperwork duties, such as summarising the day’s data; do some washing; and change the Applicant’s nappies;
(f)there was always “a huge amount of duties to do, even on the simplest day”;
(g)while it was possible to undertake “play” with the Applicant with only one person present, this would compromise the things the Applicant could do. He said that multiple people were required to enable the Applicant to undertake, simultaneously, gross motor skills, fine motor skills and communication;
(h)it was not possible to predict when the Applicant required one person, rather than two, to undertake play and therapy, due to her varying levels of energy and alertness on account of her variable sleep routine;
(i)when asked what the Father and Mother did, whilst there was a carer present in their home, the Father said:
I do a lot of admin things for [the Applicant] in the background to ensure everything’s sort of running, I also run the house, take on sort of all the banking and all of those things. [The Mother] doesn’t do those jobs, as well as just running other things in the house. Looking after [the Sister].
(j)the Father took on the bulk of the role preparing the medications for the Applicant. When asked whether the Mother took a role in this, the Father said, “I try to do it most of the time. [The Mother] on the very odd occasion does do it”;
(k)there were eight or nine medical specialists involved in the medical care of the Applicant. The frequency of appointments with those specialists fluctuated. He said that over the previous two months, the Applicant had eight or so appointments with medical specialists, with about half of them being at the RCH in Melbourne. At least one parent will attend, together with the professional carer, to take the Applicant to those appointments and to liaise with the medical team. He said attending an appointment at the RCH would usually take about four to six hours, “maybe more”, when taking into account travel and wait times;
(l)there were four shifts, and accordingly, four “handovers”, in a day. He said at the handovers, the person who has cared for the Applicant during the last shift would explain to the carer taking over what the Applicant has been doing, what seizures she has had and when she last had a nappy change;
(m)the Father said he coordinated all of the scheduling of appointments for the Applicant, with some assistance from the RCH program. He also said in the main, he tried to coordinate the dissemination of information between the medical team and the therapists and carers, and there were some systems in place to assist with that;
(n)the Father said he was in contact with the Applicant’s care agency daily;
(o)the records maintained of the Applicant’s sleep patterns and seizure activity were reviewed by the Father (or the Mother) multiple times a day;
(p)the Father said it was not possible to call on other family or friends to take on the care needs of the Applicant, if a carer was unavailable, because “they feel they’re too hard for them”;
(q)the Father said that he would spend a couple of hours each day on administrative tasks to ensure that the Applicant received the support she needed;
(r)the Applicant’s previous care agency withdrew in about June or July 2017 stating as its reason for doing so was that it could not fund carer training and it considered a larger agency would “do a better job”. Five carers from the previous care agency transitioned over to the new care agency and continued to provide care to the Applicant. The Father said that the Applicant presently had nine carers and that it was hoped that this could be increased to “12 to 14”;
(s)through the Family Choice Program (now the Complex Care Hub) carers were required to have regular contact with the Applicant (at least fortnightly care for the Applicant). The Father suggested that this limited having arrangements with multiple agencies or having a larger pool of carers, because “you wouldn’t be able to give that minimum requirement of fortnightly contact on the roster”. He said a nurse would be able to step in because their medical knowledge enabled them to step in without that regular fortnightly contact issue;
(t)the Applicant attended kindergarten in 2017. Attendance was scheduled four days per week for 15 hours per week in total. He said the emergency management of seizures while in attendance at kindergarten were slightly different from at home and a different procedure applied. A nurse from Barwon Health provided training to carers to undertake the procedure that applied at kindergarten; and
(u)when getting the Applicant ready to attend kindergarten, the carer was required to think ahead about the Applicant’s needs. He said the carer would pack additional continence aids, spare clothes, and would need to consider when her medications and feeds were due. The Applicant’s equipment was required to be transported with her, including her oxygen saturation and suctioning equipment. He said the carer who undertook that preparation would also attend with the Applicant at kindergarten.

The Mother made a statement of lived experience in support of this application dated 25 August 2017 (August 2017 Statement) and a further statement (undated) which was lodged with the Tribunal on 14 September 2017 (September 2017 Statement). A video was tendered into evidence and viewed at the hearing comprising footage of the Applicant, with a voice-over by the Mother. The Mother did not appear to give evidence at the hearing. The NDIA did not call the Mother for cross-examination.
The Mother, in her statements, stated (among other things) as follows:
(a)when under pressure, which included when the Applicant was having a life-threatening seizure, she found it very difficult to act and think and that she became overwhelmed. She said this was part of her biology; she had no control over it; and it was why her psychiatrist had stated that the Mother is not able to care, independently, for the Applicant. The Mother said:
[August 2017 Statement] - Since [the Applicant’s] birth there has only been one period of time were (sic) I actually found I was starting to be able to cope again, where I was able to get out of the house and start participating in the community, and that was when [the Applicant] was funded by the NDIA for 24/7 care with 20 hours of training per carer.
(b)she had not had any relapses of bipolar affective disorder or no hospital admissions during the period that funding was approved for 24/7 care for the Applicant. She said that her chances of avoiding a relapse were increased if she was able to prevent entering the initial stage of an episode, known as hypomania. During this phase, she said she felt energised, had very little or no sleep; talked quickly and had big ideas that she felt compelled to undertake. She said the following things were required to reduce the recurrence of her condition: a stable home environment; routine; exercise; regular sleep with an established sleep pattern; minimal stress and a meaningful, challenging outlet to provide her with a sense of purpose;
(c)she described the impact of the “NDIA funding cuts” in 2016 as follows:
[August 2017 Statement] - As time rolled on everything started to unravel. The few carers that we did have were working far too many shifts and started to call in sick more and more. With decreasing care hours [the Father] had to take carer’s leave and started to miss most of his shifts. In order to cope with the increased burden that placed on us, the only time I could do my studies was later in the night, and my sleep started to decrease. Our house became more stressful and I started to feel overwhelmed, not only by the direct impact of the lack of care for [the Applicant], but also by the resultant stress caused by it, particularly with [the Father] who was irritable all the time. Finally, I cracked and had an emergency admission to a psychiatric hospital [for a period of 16 days in April 2017]. I had a further admission a month later [for a period of seven days in June 2017] and had to withdraw from studies. This outcome was not only devastating for me but also for [the Father] and [the Sister] as I was unable to participate in the home environment.
(d)she found the “current home environment” too overwhelming and there were days when she was unable to undertake basic tasks such as getting [the Sister] ready for school, completing her university work or talking to people. She said that she had to close herself away in a quiet room until it passed. She said days like that were becoming more frequent and that this increased the responsibility on the Father;
(e)since her relapses, she said that she has had to cease some tasks completely as they were too stressful. The Father has had to do them, increasing the stress on him. These tasks included managing finances, administration and paperwork, and the Applicant’s medical appointments;
(f)in relation for the benefits to the Mother being able to continue her studies, she said:
[August 2017 Statement] - I have found academic stimulus occupies and focuses my mind, and my treating psychiatrist has determined that having study is a good activity to help keep me mentally stable.
…
[September 2017 Statement] – I now have dropped my uni studies back to one unit per trimester. There is a time limit on completing the degree to which assumes two units per trimester. There is currently no way I can increase my workload as we simply do not have enough care hours at home and the priority is for [the Father] to increase his workload to full-time capacity. I feel daunted by the number of years it is going to take me to complete my studies and would like to increase my workload to finish sooner so that I can get back to meaningful employment.
(g)the reduction in the number of carer hours impacted on the Applicant’s quality of life in 2017 because she said, with less carers, they were unable to support her going to kindergarten, as two people were required in the van to take her (one to drive and the other to watch for seizures and to manage them if they took place);
(h)in relation to the impact of the reduction of care hours on her family in general, she stated:
[September 2017 Statement] – I would also like to have time for quality family time but without assistance and enough care hours this becomes a herculean task. There is so much involved in getting [the Applicant] packed and out of the door that it becomes simply too hard and we just don’t have enough time after attending to all of the immediate things, such as organising our weekly appointments etc, that we have no time left when carers are home to set aside for planning family outings, etc.
Evidence given by the care agency
The Applicant is currently receiving care services provided by an entity registered with the Australian Charities and Not-for-profit Commission for the provision of support care services to the Applicant (Care Agency One). A Divisional general manager from Care Agency One (Agency Representative) gave evidence at the hearing and sent a letter to the Applicant’s representative dated 27 October 2017 setting out information about the care arrangements in place for the Applicant.[40]
[40] Refer Exhibit “A3”.
At the hearing, the Agency Representative stated as follows:
(a)he was responsible for the profit and loss outcomes across his Division which had a turnover of approximately $31,000,000. This Division provided in-home supports across Victoria;
(a)Care Agency One has provided carers to care for the Applicant since September 2017;
(b)he had met the Applicant’s family “to increase his understanding” as he knew there were some complexities with the Applicant’s program and he was responsible for signing off on any special requirements or additional costs or risks involved with it. He stated he did not have day-to-day involvement with the program. He said he received a report from Care Agency One’s operations manager who had direct responsibility for the program.
(c)he was responsible for making fiscal decisions in relation to the program, namely, whether to incur or absorb additional costs or to review its ongoing viability from a fiscal perspective and/or the complexity of the program;
(d)when Care Agency One took over the program, it “took on” five or six of the carers from the Applicant’s previous care agency. He said he believed that Care Agency One currently had four trained carers who cared for the Applicant. In his statement, the Agency Representative expressed his view that “12 to 14” carers were needed to deal with the usual “churn” and to ensure the roster was full at all times. He also stated that if the funding was increased to year-round 24/7 care that those numbers would increase further;
(e)there was a limit on the number of hours that the agency could direct one of its carers to provide services in any given week, being 37.6 hours “or something like that”. He also said that ideally, to avoid an over-reliance by a client on any one individual, the agency would only assign a carer to a particular client for about half of a carer’s available hours;
(f)the agency had experienced issues with recruiting for the Applicant’s program because of a supply and demand problem in the Geelong area where the Applicant lived and in relation to finding carers adequately trained to care for the Applicant given the complexity of her diagnoses, and also the “specific filters around the family”;
(g)the agency had used nursing agencies to fill some shifts since commencement of the Applicant’s program. He said that even if the pool of trained carers for the Applicant increased to “12 to 14”, he anticipated still having to fill gaps in the roster by engaging nurses. He said that, “I would not want to have that as the default but we need – our duty of care underneath the actual commercial arrangement – our duty of care is to make sure those shifts are not left to the individual or the family to pick up if need be as a fall back”; and
(h)optimally, it takes four to six weeks to recruit and “on-board” a carer within the care agency. The agency has about 200 to 210 support workers being a mixture of permanent and casual staff.
Evidence given by the Applicant’s day-to-day professional carers
A current professional carer of the Applicant (Carer One), made a statement dated 31 October 2017. At the time Carer One made her statement, she had been caring for the Applicant for approximately two years and ten months.
In her statement, Carer One stated as follows:
(a)the Applicant had grown a lot in the time she had been caring for her and that Carer One now always had to use a floor hoist and ceiling hoist machine to move the Applicant from her bed to the floor, or to her chair, to prevent injury to the Applicant and to Carer One;
(b)the Applicant’s communication skills had improved and that she was able to respond to close-ended questions. Carer One said that the Applicant’s response times varied but it usually took about 12 to 15 seconds;
(c)she had undertaken theoretical and practical training at the RCH before she started caring for the Applicant, including how to:
(i)distinguish between different types of seizures;
(ii)use the oximeter machine, setting up the limits of the Applicant’s Sp02 and heart rate;
(iii)insert the probe;
(iv)give oxygen to the Applicant;
(v)use the oxygen cylinder and concentrator;
(vi)put on the face mask or to use nasal prongs;
(vii)use the suction machine and select the catheter size for oral suctioning and use a yanker sucker when nasal suctioning;
(viii)implement the Applicant’s seizure management plan and how to give Midazolam;
(ix)feed the Applicant through the PEJ tube and give her medication through the PEG tube; and
(x)provide stoma care;
(d)the training she has received has been vital for her to care for the Applicant because if she had not received it, she does not think she would be able to look after the Applicant on her own and would not know how to manage her seizures;
(e)she needs to keep up to date with any changes to the Applicant’s care needs and new equipment, including whether she had an ear infection (requiring ear drops), any skin changes (requiring skin creams) or bowel changes (requiring management);
(f)the most difficult aspect for Carer One of caring for the Applicant was to see her struggle when she was sick and could not breath properly; when she needed percussion to help her cough and suctioning because she was unable to spit out phlegm or mucus. Carer One said she needed some time off to help manage the stress she experienced at these times;
(g)2017 had been a difficult year for the family due to unfilled carer shifts sometimes requiring the Father to do day and night shifts;
(h)she has not seen the Mother caring for the Applicant by herself;
(i)active night care was vital as the Applicant had seizures even when she was asleep; and
(j)in her view, the Applicant needed 24 hours care support.
Another one of the Applicant’s professional carers (Carer Two), made a statement dated 3 November 2017 and also gave evidence at the hearing of this application. Carer Two stated as follows:[41]
[41] Exhibit “A6”.
(a)she had been involved in the Applicant’s care for the past two years. Previously she had one permanent shift per week with the Applicant. More recently, she had one permanent shift and would cover for other unfilled shifts if she was available;
(b)the Applicant had improved dramatically, particularly, with her communication and motor skills, and was not suffering as many long seizures daily as previously. The Applicant’s personality had “come out a lot more”;
(c)caring for the Applicant involved constant observation (including taking a video monitor with her whenever she left the room); giving medication; PEG/PEJ care, monitoring the Applicant’s breathing; playing with the Applicant; hygiene care (bathing and showering); dressing; nappy changes; transfers; community access; keeping her entertained while assisting her to learn new things and improve her skills and exercises and activities to help her communication and motor skills;
(d)when filling in on some unfilled shifts, Carer Two had attended kindergarten with the Applicant and this required her to be by the Applicant’s side to help her play with things by assisting her movements to enable her to interact with other children and to monitor and manage her seizures;
(e)during night shifts, Carer Two said it was her responsibility to stay awake the whole shift to reposition the Applicant; change her nappies and attend to her oral care, monitor her seizures and oxygen saturation; start her new feed, fill in paperwork and do the Applicant’s laundry;
(f)when monitoring the Applicant’s seizures it could be difficult to distinguish between the different type of seizures she was having;
(g)to manage the Applicant’s seizures, Carer Two said a carer needed to time them and note characteristics displayed, monitor oxygen saturation and give oxygen if needed; talk to the Applicant and provide her with comfort, administer medication (Midazolam) if required and if so, monitor the Applicant’s breathing as the medication could cause respiratory depression and foamy bubbles and sometimes, suction was required;
(h)caring for the Applicant was extremely tiring due to the intensity of the care required and she did not think it was possible for her to do more than four shifts of 6.5 hours duration in a one week period; and
(i)in her view, Carer Two considered that 24/7 care was required for the Applicant.
At the hearing, Carer Two gave evidence as follows:
(a)she was working elsewhere and was also studying nursing (due to graduate in mid-2018);
(b)apart from her one weekly regular shift, she was asked to fill shifts extra shifts on average once every two days. She has only taken up the invitation to take an extra shift about once a fortnight, or once a week more recently;
(c)if she needed to move or transfer the Applicant, she would use a hoist. There were two hoists in the house. An in-built hoist which went from the bedroom to the bathroom and a portable hoist;
(d)the Applicant could nod or shake her head to communicate “yes” or “no” (and sometimes she could vocalise “yes”). She said they used the PODD book with the Applicant which took time and sometimes up to 15 minutes for the Applicant to say one thing;
(e)the length of the Applicant’s seizures were not as long as they used to be. When the Applicant was sick, her seizures got worse. She said it was easier to administer the old protocol, because the Applicant was given Midazolam automatically if the seizure lasted for five minutes, but the new protocol required an assessment first, as to whether the Applicant was coming out of the seizure at the five minute mark before administering Midazolam;
(f)Carer Two received training to care for the Applicant which took about one or two months. The refresher trainer took one day and involved doing a shift with the Applicant and the nurse. She said she believed this to be a requirement of the RCH;
(g)two or three times a year, Carer Two would meet with the Applicant’s occupational therapist and speech pathologist (with the other carers). This allowed for the therapists to provide the carers with things that they could do with the Applicant to help improve her. She said she found this “very helpful” and that the Father was always present and sometimes the Mother;
(h)when Carer Two starting caring for the Applicant, she had three shadow shifts with other carers. At the beginning, the Father and Mother made sure they were there. She first started to care for the Applicant on her own after about three months when she said she had the confidence to do so;
(i)it could be very tiring, physically and emotionally, to undertake all the tasks needed to care for the Applicant, particularly when she was sick. During a shift with the Applicant, if Carer Two left the room that the Applicant is in for any reason, she was required to take the video monitor with her and not leave the room for longer than two or three minutes;
(j)sometimes it was necessary to do a two-person lift. She said she stopped doing one-person lifts about one and a half years ago;
(k)it was not possible to care for the Applicant if she had an illness or in a set period to follow, depending on the type of illness. She said she had cancelled many shifts with the Applicant for this reason;
(l)when she was doing a shift, she said the Father and/or the Mother were at home about “98 per cent” of the time. About 60 per cent of the time, both were home. She said the Mother went to the University. She said if she required any help with the Applicant, “they’re always happy to come in and give me a hand”. She also said:
…they quite often come in and play, like [the Mother] will come in and play and [the Sister] always wants to play with [the Applicant] so she’s always usually in the room playing. Sometimes [the Mother] will come in for cuddles. Sometimes when we’re doing play you need two people and so they will come in and help with that.
(m)when asked what types of things she requested help from the Applicant’s parents with, she said:
So usually it’s when you’re trying to play and include therapy. So sitting up, if she wants to sit up not in a chair you need one person holding her up and then the other person sort of playing with her. So things like that. Sometimes if I have to move her but usually it’s just with the hoist. When I’m getting ready for showers and stuff quite often Rob will come in to see how her bowels have been for the day, things like that.
(n)she did the showering by herself using a shower chair;
(o)she would call for assistance (to get a second opinion) if she became confused about whether the Applicant was in a seizure or not or what type of seizure she was having or at times, when she has administered Midazolam, so that the Applicant’s parents could monitor the Applicant;
(p)she has provided care independently to the Applicant on night shifts while the Father and the Mother were in bed. When she had administered Midazolam, she had called the Father;
(q)she had not witnessed the Mother caring for the Applicant by herself. She said she had observed the Mother playing and spending time with the Applicant on her own.
Carer Recognition Act 2010 (Cth)
The Applicant’s representatives contended that the broader objects of the Carer Recognition Act 2010 (Cth) (CR Act) were pertinent and should be considered when the Tribunal gives effect to the objects in s 3(3)(c)(iii) of the Act. The Tribunal accepts this contention.

On the days when the Father is not working or if the shift in question is a night shift, the Father is not due to work the following day, the Tribunal considers that it is reasonable to expect that the Father will cover that shift as assisted by the Mother. The funding that was provided for that shift may be “banked” and used to engage a carer on a subsequent day during a shift that the Father is otherwise scheduled to care for the Applicant (as a consequence of this Tribunal’s decision), to allow respite to be provided to the Father at a later point in time.
Based on the evidence, the Tribunal concludes that Emergency Top-up Nursing Support in the limited circumstances set out in paragraph [230] meets the requirements of s 34(1) of the Act and should be included in the Applicant’s statement of participant supports in the December 2016 Plan. Otherwise, the Tribunal does not consider that any other type of Top-up Nursing Support should be included in the statement of participant supports for the Applicant as the requirements of s 34(1)(f) and s 34(1)(e) are not met and as such, they do not constitute reasonable and necessary supports for the Applicant. In making this decision, the Tribunal notes that the approval granted for the Top Up Carer Training should promote an increase in the carer pool from which support carers may be drawn from to fill shifts to assist the Applicant with self-care.
Music Therapy Support
In the statement of participant supports for the Applicant in the December 2016 Plan, the NDIA approved the following supports for the Applicant:
Support Area: Improved daily living
Budget: $31,778.17
Details:Occupational therapy, physiotherapy and speech therapy – 120 hours per year.
Music therapy – 12 hours per year
Orthotics – 6 hours per year
Continence assessment – 3 hours per year
Counselling – 40 hours per year
This plan also stated in the plan, immediately above the table describing the supports, that where a support was listed in the plan as “stated’, the participant “must purchase this support as it is described” in the plan and that they “must not swap it with any other support”. None of the supports listed in the Improved Daily Living Support Area were listed as “stated” supports. By implication, the supports within that area were able to be used flexibly and they could be swapped for other supports, although, the Tribunal accepts that this could have been made clearer to the participant in the plan.
In subsequent plans put in place by the NDIS, the ability of the Applicant to be able to use the funding in this support area flexibly for a range of different therapies, was made a lot clearer to the Applicant. For instance, in the Current Plan, the description of the supports for the Improved Daily Living Support Area was amended as follows (emphasis added):
Provision of therapy services across all environments; with therapists to work in collaboration to support family to implement strategies to assist in meeting goals as per the plan including support to staff where required. Detailed progress report on strategies implemented & outcomes against relevant goals in plan, to including ongoing functional needs with goals to inform next plan. Therapists are to adhere to the NDIS guidelines relating to NDIS interface with education and health. Therapy allocation including therapy travel – can be used flexibly as required by family.
In the Internal Review Decision, the NDIA did not accept the request by the Applicant to include 24 hours of music therapy in the statement of participant supports but instead, added an additional eight hours of therapy (unspecified).
At the hearing, the Father requested music therapy for the Applicant in accordance with the recommendations of the music therapists. The music therapists recommended that the Applicant receive 26 hours of music therapy per year. No evidence was tendered by the NDIA providing an alternative recommendation.
It was contended in the NDIA’s SOP that funding of additional music therapy (beyond the 12 hours (plus the additional 8 hours) already approved, in the form of general therapy) did not meet the requirements of s 34(1)(c) and/or s 34(1)(d) as there was no evidence to establish the benefit of the additional therapy to the Applicant beyond the approved hours and therefore, it was not possible to show that it constituted value for money.
At the hearing, the NDIA also suggested that at the end of the Applicant’s last plan she had not used funding that was available to her for 48 hours of therapy (unspecified), which could have been used for additional music therapy. This was put to the Father in cross examination at the hearing. The Father indicated that he did not know how many therapy hours remained at the end of the plan. He said he was not in a position to dispute this assertion. He submitted that even if this was so, it should not matter because the basis for his request for additional hours of music therapy reflected the recommended hours of therapy by the Applicants’ music therapists. In the AC Submissions in Reply, Ms Wong, contended, in effect, that the Tribunal should not find that a support is not reasonable and necessary because a participant had not used all of the available funding the previous plan. Ms Wong also contended the NDIA had not presented sufficient evidence to demonstrate that there was 48 hours of approved funding for therapy (unspecified) in the previous plan that were not used by the Applicant.
The challenge with this particular issue is that it does not align with the structure of the funding approved for this support in the more recent plans including the Current Plan. The Applicant’s representatives contended in the AC Submissions that there was funding for the Applicant in the plan under review for up to a maximum of 20 hours. By the NDIA adding a reference to the number of hours next to each type of therapy, it had the potential to confuse matters and it provided the Applicant’s parents with an impression that there was a cap in place for each of the different types or categories of therapies. However, this was not the case and the global funding of $31,778.17 was able to be used flexibly, as the different types and categories of therapies were not marked as “stated” supports.
In one sense, given there was no evidence or report by the Father at the hearing of the Applicant ever having used the entire budget in the plans for the Support Area for Improved Daily Living, there was a sense of unreality about this matter being agitated before the Tribunal. While it appeared to be a theoretical exercise based on the underutilisation of this funding in previous plans, the Tribunal acknowledges that at some point the NDIA will undertake a calculation to allow it to arrive at the global funding figure that it will insert into the statement of supports for this Support Area in future plans. In that sense, the number of therapy sessions for this type of therapy is important to establish, even if it is not specified in the plan as a separate support. That is, if it used in the NDIA’s calculations, it will affect the global funding approved for the Support Area for general therapies.
From that point of view, so that the parties receive the benefit of knowing from the Tribunal what it considers to be an appropriate component of this global figure on account of a provision for the cost of a music therapist, even if it is ultimately used for other types of therapies, I am satisfied that based on the evidence of the Father and from the Applicant’s previous and current music therapists as outlined in detail below, that the provision of funding (as a component of the global budget for Improved daily living Support Area) for 26 hours of music therapy for the Applicant is reasonable and necessary, as I am satisfied that all of the requirements under s 34(1) of the Act are met.
The Father gave evidence at the hearing that:
(a)the Applicant started receiving music therapy about two years ago and has music therapy once a fortnight; and
(b)at the time the Applicant had her first session she was not using her voice much at all. After the first session, the father observed the Applicant laughing, chatting and vocalising and that she “came alive after that first session”. He said the music therapy had also helped the Applicant to move and assisted with her communication. He said these increased activities were connected with the therapy because the Applicant was engaging with the songs. He described it as a “highly interactive type of experience”. He said this therapy has pushed her further in a lot of ways.
The Applicant’s current music therapist (Current Music Therapist), together with the applicant’s former music therapist (Former Music Therapist), jointly prepared a “Music Therapy program review” report dated 1 September 2017. These therapists have consistently recommended that the Applicant be provided with fortnightly one-hour music therapy sessions. In their joint report, the music therapists stated:
Through a therapeutic program, a music therapist works with a participant through music in a very specific way to enable non-verbal communication and interaction. This is very different to playing a song or singing a song with a participant – skills that may be utilised by a non-specialist person such as informal supports and support workers. Although the sharing of [the Applicant’s] musical preferences and abilities within music activities are shared with other care-givers of [the Applicant], the actions and processes within a therapeutic session with a registered music therapist are not all transferable.
…
[The Applicant’s] level of physical impairment and her delayed timing of responses cause an interruption in the feedback of responses to her communication attempts. Frustrations present for children with communication difficulties are demonstrated when a predictable response to attempts at communication are not forthcoming. This may result in future states of learned helplessness and lack of motivation for communicating. In music therapy, [the Applicant’s] responses and communication are being constantly acknowledged and responded to through the music and therefore rewarded. The dynamic nature of shared music making without the need for verbal language replicates the natural active and reciprocal back and forth communicative language that reflects verbal exchanges used by children. A part of the success of this dynamic interaction is the ability of a trained therapist to spontaneously compose and improvise songs and actions, thereby motivating the child to continue their communicative endeavours. The intrinsic structure in songs and improvisional music has been shown to assist with organising motor movements and building anticipation in order to respond in a timely way resulting in frequent experiences of success. This is the key to [the Applicant’s] ongoing engagement and motivation in her music therapy sessions.
The Former Music Therapist provided a music therapy report dated October 2016, statement dated April 2017 and gave evidence at the hearing. She stated:
(a)the aims of the therapy were for the Applicant to:
(i)exercise choice and control by indicating a preference of song, instrument or activity through head movement, pointing, reaching out or vocalising;
(ii)maintain and increase body awareness and tactile experiences through self-initiated active movements accompanied by songs reflecting her activity;
(iii)maintain and increase her non-verbal communication through improvised percussion playing, guitar strumming and vocalising;
(iv)increase gross motor control through playing a variety of percussion instruments in the session;
(v)have opportunities for increased self-expression and communication through creative, shared music making; and
(vi)increase social opportunities through group music making;
(b)the Applicant had responded positively overall, indicated by her attentiveness and engagement in the music activity, responding more purposefully, indicating both body and general awareness and clearly indicating choices;
(c)(as at October 2016) the Applicant’s level of non-verbal communication had increased markedly over the previous six months.
Carer Two gave evidence at the hearing as follows when asked how the Applicant responds to music therapy:
That’s the most lively and happy and excited I see her, when she does her music therapy sessions. That’s when she’s the most vocal, and I think since she’s been doing music therapy, she has been a lot more vocal. So, I think that’s helped with that. Yes, she really loves it.
…
I think even like her motor skills, playing with the instruments, has helped. So, like, now she can – like, she plays with instruments, not during music therapy and I think the actual movements of how to do that and get the noise that she wants.
The Applicant lodged an open letter from the singing coordinator from the Applicant’s Church. The singing coordinator stated that:
(a)she was involved in activities such as singing, playing instruments and do actions to music with children aged between 3 and 13 years before Sunday school classes would begin;
(b)[the Applicant] had attended with her support carer since she was aged three;
(c)[the Applicant] loved music and she had seen a definite improvement in her skills since starting music therapy. On good days, [the Applicant] was able to tap her tambourine to the beat. Another time, she said she heard [the Applicant] yelling out with a melody as she was trying to sing a song;
(d)[the Applicant’s] development was slowly improving and she considered it was due to her music therapy and the support and assistance of one-on-one care for the Applicant.
Based on the conclusion of the Tribunal that the provision of 26 hours of music therapy to the Applicant per year is a reasonable and necessary support, the Tribunal considers that
(a)the description for the Improved Daily Living Support Area in the statement of participant supports in the December 2016 Plan must be changed to adopt the description given to this support in the Applicant’s Current Plan; and
(b)the global figure be recalculated by the NDIA to include as a component 26 hours of music therapy in place of the component that previously comprised 12 hours of music therapy and the additional 8 hours of unspecified therapy.
EXTENSION OF THE REVIEW DATE OF THE PLAN
As outlined in paragraph [63], the Tribunal considers that it is necessary to extend the review date in the statement of participant supports in the December 2016 Plan as part of making its decision. In the Applicant’s SOP it was contended by Ms Wong that the review date should be extended for a period of 24 months for the reason:[66]
[114] All of the Applicant’s NDIS plans to date have been reviewable within 12 months or less. Insecurity of funding for carer support is a cause of major stress to the family. [The Applicant’s parents] are unable to plan for future work or studies with any degree of confidence. Each review of the plan, and each internal and Tribunal review of the Agency’s decisions, involved a lengthy and time-consuming process, which often last many months. This exacerbates the incredible strain that the family is already under.
[115] [Doctor …] states that “With current available treatments [the Applicant] is likely to require monitoring for longer than 5 years”. Given that the Applicant’s care needs are unlikely to decrease, and the difficulties caused by insecurity of funding, the Applicant submits in these circumstances it is appropriate to consider making a plan for at least 24 months. This will offer some stability in arrangements. Either the parents or the Agency can initiate a review if circumstances change during the life of the plan.
[66] Refer page 32 of the Applicant’s SOP.
The NDIA contended that a short review period (i.e. six months) is most appropriate as the start of the school will bring a significant change in the Applicant’s circumstances and those of her family.
I consider that the review period should be based on a consideration of the likely degree of stability of the circumstances surrounding the family circumstances of the Applicant and also the stability of her needs. While her needs appear to be reasonably stable in the sense that the frequency and severity of her seizures have not changed significantly, accepting of course that this fluctuates from time to time, I consider that the Applicant and her family’s circumstances are not as stable and may change between now and the middle of next year to warrant a further review process. The Applicant is settling in a new school which is a big change for her and her family. The Father has indicated an intention to change his current work arrangements. The Mother’s condition seems to have stabilised but she has suffered significant relapses previously. Overall, I consider the period of 12 months to strike the right balance. I will extend the review dated in the statement of participant supports to 30 June 2019.
CONCLUSION
Accordingly, the Tribunal sets aside the decision under review in this application being the Internal Review Decision and in substitution, decides to set aside the earlier decision of the NDIA to approve the statement of participants supports in the December 2016 Plan as referred to above, and in substitution, approves a statement of participant supports that:
(a)specifies the following reasonable and necessary supports for the Applicant as follows:
Support Area: Support Coordination
Details: Specialised Support Coordination and Support Coordination. Assist family to implement and manage NDIS plan.
Support Area: Assistive Technology
Details: Equipment requirements for the next 13 months, pending quotes and NDIA approval. This may include communication device and wheelchair mounts, slings, knee orthoses, eye gaze controls, change table, power wheelchair, body splint, AFO and orthotic shoes. Also funding is available for repairs of equipment that is not covered under the warranty.
Support Area: Improved Daily Living
Details: Provision of therapy services across all environments; with therapists to work in collaboration to support your family to implement strategies to assist in meeting your goals as per the plan including support to staff where required. Detailed progress report on strategies implemented and outcomes against relevant goals in plan, to include ongoing functional needs with goals to inform the next plan. Therapists are to adhere to the NDIS guidelines relating to NDIS interface with education and health. Therapy allocation including therapy travel – can be used flexibly as required by family. A component of the budget for this support area is to include at least 26 hours for music therapy for the Applicant.
Support Area: Core Supports
Funding for your continence products including delivery. Funding for your assistive technology products are level 1 of the AT complexity Level Classification document and available ‘off the shelf’. Warning: some low cost equipment like bed rails, sticks, covers and weighted blankets are high risk and should NOT be purchased with these funds as they require an AT assessment. Therapy items should not be purchased.
Assistance with self-care to be provided by a support carer, 24 hours a day for four days each week and 16 hours a day for three days each week. This includes Saturday, Sunday and public holiday rates. 800 hours per year of personal care by a support carer will be deducted for when you are in attendance at your school.
Eight days (for 24 hours) of short-term accommodation for the Applicant should the Applicant’s parents choose this support as an alternative form of personal care for the Applicant. If this support is provided to you on any day, it will take the place of a day of carer support with self-assistance as set out in the above paragraph.
In circumstances where:
(a)a support carer was previously scheduled to fill a shift to care for you; and
(b)within 24 hours before that shift is due to commence, the carer advises the agency they can no longer care for you; and
(c)the agency and your parents exhaust all options of engaging another carer to fill that shift; and
(d)your father is due to work that day or if the shift in question is a night shift, your father is due to work the following day;
assistance with self-care by a qualified nurse will be provided to you.
The provision of initial client-specific carer training to NDIS-funded support carers (currently $1,000 per carer) (beyond the first five carers per year who are funded by the Royal Children’s Hospital (RCH)). The cost of paying the NDIS-funded support carer for the hours they will spend to undertake this training, will not be funded under this plan by the NDIS.
The provision of refresher client-specific carer training to NDIS-funded support carers provided that the training is required as a consequence of a change to the seizure management protocols in the RCH Care Manual.
(b)to extend the review date on the plan to 30 June 2019; and
(c)to amend the global budget figures for each Support Area to accord with calculations to be undertaken forthwith by the NDIA to make the necessary adjustments for the new period of the plan which runs from the date of this decision to the date of the new review date (13 months); and to incorporate the recalculation that is required as a consequence of the decision of the Tribunal in relation to the Improved Daily Living Support Area and the Core Supports Area. General liberty to apply to this Tribunal if any dispute arises between the parties as to the basis upon which the budget calculations are performed.

I certify that the preceding 252 (two hundred and fifty two) paragraphs are a true copy of the reasons for the decision herein of Member K. Parker

........................[sgd]..............................................
Associate
Dated: 31 May 2018

Date(s) of hearing:

8, 9 November 2017 and 15 December 2017

Counsel for the Applicant:

Solicitors for the Applicant:

Ms Angie Wong of Counsel

Victoria Legal Aid

Counsel for the Respondent: Ms Kathleen Foley of Counsel

Solicitors for the Respondent: National Disability Insurance Agency

Date(s) of hearing:	8, 9 November 2017 and 15 December 2017
Counsel for the Applicant: Solicitors for the Applicant:	Ms Angie Wong of Counsel Victoria Legal Aid
Counsel for the Respondent:	Ms Kathleen Foley of Counsel
Solicitors for the Respondent:	National Disability Insurance Agency