JQJT and National Disability Insurance Agency
[2016] AATA 478
•6 July 2016
JQJT and National Disability Insurance Agency [2016] AATA 478 (6 July 2016)
Division
NATIONAL DISABILITY INSURANCE SCHEME DIVISION
File Number
2015/6589
Re
JQJT
APPLICANT
And
National Disability Insurance Agency
RESPONDENT
DECISION
Tribunal Senior Member J F Toohey
Professor R McCallum AO, Member
Dr L Bygrave, MemberDate 6 July 2016 Place Sydney The decision to approve the statement of supports in the applicant’s plan is varied to include funding for one return trip of up to 36 kilometres each weekend by a support worker to take him to community access support, to a maximum of $1,539 per annum.
...................[sgd].....................................................
Senior Member J F Toohey
CATCHWORDS
NATIONAL DISABILITY INSURANCE SCHEME – child – severe intellectual disability, autism, attention deficit hyperactivity disorder – participant in the NDIS – reasonable and necessary supports – transport costs – what it is reasonable to expect families, carers, informal networks and the community to provide – day-to-day living costs – decision under review varied
LEGISLATION
National Disability Insurance Scheme Act 2013
National Disability Insurance Scheme (Supports for Participants) Rules 2013
CASES
Re Drake and Minister for Immigration and Ethnic Affairs (No. 2) (1979) 2 ALD 634
SECONDARY MATERIALS
NDIA Fact Sheet: Mainstream interface: Transport for children
NDIA Participant transport fact sheet
REASONS FOR DECISION
Senior Member J F Toohey
Professor R McCallum AO, Member
Dr L Bygrave, Member6 July 2016
Background
JQJT is a 13-year-old boy who has severe autism, severe intellectual and language delay, and attention deficit hyperactivity disorder. He is unable to express himself verbally and needs constant supervision and assistance with all activities of daily living. He is an only child and lives with his parents in regional New South Wales. He became a participant in the National Disability Insurance Scheme (NDIS) in February 2015.
As a participant in the NDIS, JQJT has a plan which sets out his statement of goals and aspirations and a statement of participant supports setting out the reasonable and necessary supports that will be funded under the NDIS.
The Chief Executive Officer (CEO) of the National Disability Insurance Agency (NDIA) has approved a plan for JQJT which includes funding for “assistance to access community, social and recreational activities” for three hours on weekends and for six hours, twice a week, during school holidays, to support him to work towards his goal of being “able to participate safely and socially in the community”. For convenience, we will adopt the language of the plan and refer to this support as “community access support”.
The funding for community access support in effect continues an existing arrangement under which a non-government service was funded to provide a support worker to take JQJT to activities on weekends and during school holidays. The cost of the worker’s travel was covered under the arrangement.
With the introduction of the NDIS, the cost of transport is no longer included in the funded support, and those whose plans do not include funding for transport must meet the cost themselves. The NDIA considers transport to be the responsibility of JQJT’s parents and have not included funding for the support worker’s transport in his plan. As an interim measure, on 12 June 2015, the NDIA agreed to include “transitional transport funding” for three months from 30 March 2015 to allow time “to consider [JQJT’s] transport options in the future”.
The decision under review
A participant’s plan must include a date by which it will be reviewed (“periodic review”). The review date is commonly 12 months from commencement of the plan but may be sooner or later. As well, reviews may be undertaken under s 48 at any time at a participant’s request or on the initiative of the CEO, usually if there is a change in circumstances. A review must be conducted if a person affected by a decision requests review under s 100 (“internal review”).
JQJT’s first plan started on 30 March 2015 and was to be reviewed by 29 March 2016. On 8 September 2015, his mother sought internal review of the decision concerning funding for transport. On 4 December 2015, the NDIA affirmed the decision not to fund transport, beyond the transitional three months, on the ground that it does not meet subsection 34(1)(e) of the National Disability Insurance Scheme Act 2013 (the Act).
On 17 December 2015, JQJT’s mother applied to the Tribunal for review of the NDIA’s decision.
In March 2016, the NDIA conducted a periodic review of JQJT’s plan as required, and a second plan was prepared on 29 March 2016. By operation of subsection 37(3) of the Act, the first plan ceased to have effect when replaced by the second. This raises a question as to the Tribunal’s jurisdiction.
The Tribunal has jurisdiction to review a reviewable decision only after it has been the subject of internal review under subsection 100(6): s 103. A reviewable decision includes a decision “to approve the statement of participant’s supports in a participant’s plan”: s 99(d).
Strictly speaking, the decision which is the subject of the application before the Tribunal concerns a statement of supports in a plan which has ceased to have effect. Although the statement of supports in the second plan as it relates to transport is identical, it has not been the subject of internal review. However, it would only serve to delay matters and increase costs to require JQJT’s mother to start again and seek internal review of the statement of supports in the second plan, presumably to end up before the Tribunal again over what is in effect the same decision. We have therefore decided we should continue to determine the application before us even if, on a strict reading of the Act, the jurisdiction to do so, now that a new plan is in effect, may be open to question.
The family’s circumstance
JQJT is unable to do anything for himself and needs help with all aspects of daily living. According to a report in September 2014 from a clinical psychologist who has been seeing him since 2007, he has “ongoing behavioural challenges including impulsivity and spontaneous acts of aggression”; he had recently been taken off the playground at school because of his behaviour which deteriorates when he is under stress or in situations with “high sensory input”. The report noted that none of a wide range of medications had been successful in treating his attention deficit hyperactivity disorder. The psychologist reported that it was difficult to keep him occupied and his only real pleasure was walking around shopping centres; he had no interest in any activity requiring any degree of attention, other than helping his mother to cook.
JQJT’s mother told us there have been no positive changes in his symptoms since the psychologist’s report, and his behaviour has deteriorated. She said he is often not asleep until nearly midnight and then usually only sleeps for about three hours. We accept her evidence.
JQJT attends a special school from 9:00am to 3:00pm on weekdays except on Tuesdays when his parents pick him up at lunchtime and take him to a Riding for the Disabled class which he enjoys. They stay with him during the class which lasts 30 to 45 minutes. They drive him to and from school each day and take him out when they can, for example to the beach, and they take him to a cooking class once a month, which he enjoys. His mother told us there is a nice park near their home but he cannot tolerate the noise there and runs back to the car wanting to go home.
JQJT’s mother described to us how difficult it is to keep him occupied and said he will spend hours wandering aimlessly around the house and garden; he has a short attention span and mood swings; he becomes frustrated and agitated and is prone to spontaneous acts of aggression such as hitting himself and others; his behaviour is impulsive and he has masturbated in public. His behaviour has become increasingly difficult as he has grown older. In the last year, he has started acting impulsively and aggressively in the car, for example, pulling the driver’s hair and unbuckling his seat belt and trying to get out of the car while it is moving. He now requires a harness to restrain him while driving. The cost of the harness is met by the NDIS.
Not surprisingly, the constant attention and supervision that JQJT needs is exhausting for his parents. Neither has any close or extended family in Australia, they are socially isolated and have no normal life of their own. His mother receives a carer payment, carer allowance and family tax benefit. His father has no income of his own. The demands on them are recognised in JQJT’s plan which provides for 28 nights of short-term accommodation, the highest level of respite funded under the NDIS.
JQJT’s mother told us that the respite benefit of the community access support for three hours on the weekend is undermined if she or her husband has to drive him to meet the support worker, only to return a short time later or, alternatively, stay in the car or fill in their time somehow.
Mr Shannon Spence, a social worker who has been engaged to coordinate NDIS supports for JQJT and his family, has provided a statement detailing his behaviour and need for constant supervision. Mr Spence has itemised the distances from the family’s home to places where JQJT went with his former carer. A return trip to the beach is 36 kilometres and would cost $28.08 at the current rate of 78 cents per kilometre.
The lack of current community access support
A complicating factor in assessing what is reasonable for JQJT’s family to provide by way of transport is that he has not had the benefit of the community access support in his plan since around December 2015 when his long-term carer left. Since then, his mother has been unable to find a suitable carer with whom he will agree to stay. For similar reasons, his parents have not had the benefit of the overnight respite in his plan since around June 2015. Consequently, the demands on them have been extreme and constant, except for when he is at school when they catch up on sleep and do housework and shopping.
Without any certainty as to when a suitable carer will be available to take JQJT to community access support activities, we are considering what is reasonable for his family to provide in something of a vacuum. One approach would be to defer a decision until suitable arrangements are in place, but we have decided to approach the matter as if community access supports are currently in place, in the hope that suitable arrangements can be made in the near future.
The National Disability Insurance Scheme Act 2013
Subsection 34(1) of the Act provides that we must be satisfied of each of the following when specifying in JQJT’s plan the reasonable and necessary supports that will be funded:
(a)the support will assist the participant to pursue the goals, objectives and aspirations included in the participant's statement of goals and aspirations;
(b)the support will assist the participant to undertake activities, so as to facilitate the participant's social and economic participation;
(c)the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
(d)the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice;
(e)the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
(f)the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
(i) as part of a universal service obligation; or
(ii) in accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability.
The only matter in dispute in this case is subsection 34(1)(e).
The Rules
In accordance with s 209 of the Act, the Minister may make rules about a range of matters in the Act. The National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Rules) deal with the assessment and determination of reasonable and necessary supports.
Rule 3.4(a) sets out the matters that must be considered in deciding whether funding of a support takes account of what is reasonable for families, carers and other supports to provide for a participant who is a child. They are:
(i) that it is normal for parents to provide substantial care and support for children; and
(ii) whether, because of the child’s disability, the child’s care needs are substantially greater than those of other children of a similar age; and
(iii) the extent of any risks to the wellbeing of the participant’s family members or carer or carers; and
(iv) whether the funding or provision of the support for a family would improve the child’s capacity or future capacity, or would reduce any risk to the child’s wellbeing;
In all cases, the desirability of supporting and developing the potential contributions of informal supports and networks within their communities must be considered: rule 3.4(c).
Part 5 of the Rules sets out general criteria for supports, and supports that will not be funded or provided. Rule 5.1(d) relevantly provides that a support will not be provided or funded under the NDIS if:
… it relates to day-to-day living costs (for example, rent, groceries and utility fees) that are not attributable to a participant’s disability support needs.
Rule 5.2 provides:
The day-to-day living costs referred to in paragraph 5.1(d) do not include the following (which may be funded under the NDIS if they relate to reasonable and necessary supports):
(a)additional living costs that are incurred by a participant solely and directly as a result of the disability support needs;
(b)costs that are ancillary to another support that is funded or provided under the participants plan, and which the participant would not otherwise incur.
NDIA Policy
Following Re Drake and Minister for Immigration and Ethnic Affairs (No. 2) (1979) 2 ALD 634, the Tribunal should apply government policy unless there is good reason not to do so.
The NDIA has referred us to a “fact sheet” titled ‘Mainstream interface: Transport for children’ which sets out “transportation supports the NDIS will fund for children”. It states:
Parents of participants in the Scheme have a responsibility to meet their child’s daily transportation requirements.
However, some children may require additional assistance when the child cannot use public transport or their parent’s vehicle, even if modified, due to their disability.
Transportation supports for children “most appropriately funded through the NDIS” are stated to include:
·supports that enable independent travel by the parent and child including training and support to use public transport and transport related aids and equipment (e.g. mobility aids such as wheelchairs and some scooters);
·modifications to a private vehicle to transport the child with disability and their equipment;
·transitional plan arrangements for the reasonable and necessary cost of taxis or other private transport options for children with on-going functional impairments who are not able to travel independently due to their disability.
Supports for which the NDIS will not be responsible are:
·ensuring public transport options are accessible to a person with disability, including through the funding of concessions to people with disability to use public transport
·compliance of transport providers and operators with laws dealing with discrimination on the basis of disability, including the Disability Standards for Accessible Public Transport 2002
·transport infrastructure, including road and footpath infrastructure, where this is part of a universal service obligation or reasonable adjustment (including managing disability parking and related initiatives)
·support to compensate for the lack of a public transport system
·a child’s day-to-day living costs. This means that expenses such as groceries, utilities and telephone or internet costs are the responsibility of a parent – as are a child’s everyday transport requirements
·emergency or in-patient transport
·transport that is substitute for parental responsibility
The precise status of the “fact sheet” is not clear but we accept that it reflects NDIA policy. It appears, from the reference to transportation supports for children “most appropriately funded through the NDIS” and those for which the NDIS will not be responsible, that the policy is directed to subsection 34(1)(f) rather than to subsection 34(1)(e). However, as it relates specifically to transport for children, we have taken it into account in considering NDIA policy regarding transport.
A second “fact sheet” is titled ‘Participant transport fact sheet’. It provides for “three levels of supports for transport assistance” which are “used to provide a transport budget for participants”. It states:
A participant will generally be able to access funding through the NDIS for transport assistance if the participant cannot use public transport without substantial difficulty due to their disability; funding takes into account any relevant taxi subsidy scheme; and it does not cover transport assistance for carers to transport their family member with a disability for everyday commitments.
This second “fact sheet” appears to be directed principally towards adults who are unable to use public transport in order to attend work, study or day programs. We have taken it into consideration because the exclusion of transport “for everyday commitments” is consistent with the rule concerning day-to-day living costs and because the lowest level, for those “seeking to enhance their community access” is set at a maximum of $1,539 per year.
Consideration
As we read them, the relevant parts of the Act, Rules and policy establish the following general principles:
·the NDIS is not responsible for everyday costs that are ordinary costs of living;
·the “day-to-day living costs” in rule 5.1(d) are not confined to “rent, groceries and utility fees”; they are examples and not an exhaustive list;
·transport is an incidental cost of everyday life for most people and is a day-to-day living cost;
·parents are expected to meet a child’s “everyday transport requirements”;
·it does not follow, merely because transport is ancillary to a funded support, that it should be funded;
·the circumstances in which transport may be funded are strictly limited: it must relate to a support that has been determined to be reasonable and necessary; it must be an additional cost and incurred solely and directly as a result of disability support needs; and where ancillary to another funded support, must be a cost which the participant would not otherwise incur;
·the overriding question for us is whether funding for transport takes account of what it is reasonable to expect families, and JQJT’s family in particular, to provide by way of transport.
We accept that the cost of transport to and from community access support is an additional cost solely and directly related to JQJT’s disability support needs and one which his parents would not necessarily otherwise incur. It is additional to the day-to-day transport they provide by taking him to and from school each day, to the riding class and on other outings during the week and on weekends.
Section 34(1)(e) is cast in generic terms of what it is reasonable for families and others to provide. That language is reflected in rule 3.4(a)(i) which requires us to take into account the unarguable proposition that it is normal for parents to provide substantial care and support for children. In the context of transport, it is normal for parents to provide transport for a child of 13 years, for example, to and from school, friends’ houses, sporting events and so on. That said, many 13-year olds have a degree of independence, for example, to catch public transport to and from school, or ride a bicycle to friends’ houses.
In contrast to rule 3.4(a)(i), rules 3.4(a) (ii), (iii) and (iv) direct attention to the particular circumstances of a participant and his or her family.
Rule 3.4(a)(ii) requires us to consider whether, because of his disability, JQJT’s needs are substantially greater than those of other children of a similar age. The NDIA submits that this should be construed as asking whether his needs for transport are substantially greater than those of other children of a similar age. We see no basis to read this qualification into the rule; what it is reasonable for a family to provide in respect of a particular support should be considered in light of the support they have to provide the child generally because of his or her disability. There is no doubt that, because of his disability, JQJT’s needs are substantially greater than those of other children of a similar age.
Rule 3.4(a)(iii) requires us to consider the extent of any risks to the well-being of JQJT’s family in providing the particular support. We accept his mother’s evidence that his father suffers from depression, and between them they are struggling to care for JQJT. We accept that, regardless of whether they have the benefit of respite, the demands on them are substantial and exhausting. We accept that, without the inclusion of transport in his plan, transporting JQJT to community access support increases the burden on them, reduces the benefit of respite during those hours, and poses a risk to their wellbeing.
The NDIA submits that the purpose of the community access support is to assist JQJT’s social participation and not to provide his parents with respite. We accept that submission but, when considering the wellbeing of any family caring for a person with serious disabilities, the two cannot readily be separated; respite is a secondary benefit that goes to the well-being of the family.
Rule 3.4(a)(iv) requires us to consider whether funding for transport would improve JQJT’s present or future capacity, or would reduce any risk to his wellbeing. We accept that, without this support, it is probable that he would not have the benefit of the community access support. To the extent that the community access support will support his goal of participating safely and socially in the community, funding of transport will improve his capacity and his wellbeing.
Conclusion
We are not persuaded that the NDIS should meet the cost of transport to community access support on weekdays during school holidays because JQJT’s parents are relieved of the need to take him to and from school each day during those times. The cost of transport on two occasions a week during school holidays would likely be incurred by any parent. Further, as the funded support is in two six-hour blocks, his parents should be able to obtain the benefit of respite even with driving him there and back. We think it reasonable for them to drive him to and from the support worker on those occasions.
However, the additional burden of driving him to meet the support worker on weekends especially during term time, when they already drive him to and from school each day and on other outings, limits the benefit to them of respite on those occasions. It increases the burden on them and is an added risk to their wellbeing.
We are satisfied that funding for transport for weekend support takes into account what it is reasonable for his parents to provide. In coming to this decision, we have had regard to the need to ensure the financial sustainability of the NDIS (see subsections 3(3)(b) and 4(17)(b) of the Act). To this end, funding for transport recognises JQJT’s particular circumstances but should be limited. We are satisfied that his plan should include funding for one return trip of up to 36 kilometres by a support worker each weekend to take JQJT to community access support, to a maximum of $1,539 per annum, being the maximum level 1 funding available under NDIA policy for participants “seeking to enhance their community access”.
We are satisfied in the circumstances of this case that funding for transport to community access support takes into account what is reasonable for JQJT’s family to provide. The decision under review to approve the statement of supports in his plan is varied to include funding for transport to assist him to attend community access support as set out above.
We are mindful that this decision is made in somewhat artificial circumstances in which it is not possible to know what form community access support will take once it can be arranged, or the location, or the distance involved. We note that the plan currently in effect is to be reviewed by 28 March 2018. We do not propose to amend that date but note that it is open to the CEO under subsection 48(4) to review a participant’s plan at any time.
I certify that the preceding 47 (forty -seven) paragraphs are a true copy of the reasons for the decision herein of Senior Member J F Toohey, Professor R McCallum AO, Member, Dr L Bygrave, Member ........................[sgd]................................................
Associate
Dated 6 July 2016
Date of hearing 21 June 2016 Solicitors for the Applicant Ms J Finlay, Legal Aid New South Wales Solicitors for the Respondent Mr T Galvin, Minter Ellison
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