TKCW and National Disability Insurance Agency
[2014] AATA 501
•23 July 2014
[2014] AATA 501
Division NATIONAL DISABILITY INSURANCE SCHEME DIVISION File Number(s)
2014/0921
Re
TKCW
APPLICANT
And
National Disability Insurance Agency
RESPONDENT
DECISION
Tribunal Senior Member J Toohey
Ian Thompson, MemberDate 23 July 2014 Place Adelaide The decision under review is affirmed.
..........................................................
Senior Member J Toohey
CATCHWORDS - NATIONAL DISABILITY INSURANCE SCHEME - child - Autism Spectrum Disorder- early intervention requirements - reasonable and necessary supports - The Listening Program - current good practice - child care support - decision under review affirmed
Legislation
Administrative Appeals Tribunal Act1975 s 35(2)
National Disability Insurance Scheme Act2013 ss 3, 3(3)(b), 4, 4(17), 21(1), 25(1), 32, 33(1) and (2), 34(1), 48(2), 100(6)
Secondary Materials
National Disability Insurance Scheme (Supports for Participants) Rules 2013
Kathy Carley “Sound Therapy: A Complementary Intervention for Individuals With Sensory Integration and Processing Disorders” (2013) 36 The American Occupational Therapy Association Inc
Margot Prior and Professor Roberts “Early Intervention for Children with Autism Spectrum Disorders: ‘Guidelines for Good Practice 2012’”
Sinha Y, Silove N, Hayen A and Williams K, “Auditory integration training and other sound therapies for autism spectrum disorders (ASD)” (2011) 12 The Cochrane Library
REASONS FOR DECISION
Senior Member J Toohey
Ian Thompson, MemberBACKGROUND
This decision concerns TKCW, a three year old child who is one of twin brothers. TKCW has Autism Spectrum Disorder. He meets the early intervention requirements in the National Disability Insurance Scheme Act 2013 (the NDIS Act) and is a participant in the National Disability Insurance Scheme (NDIS).
As this matter concerns a child, the Tribunal has made an order under s 35(2) of the Administrative Appeals Tribunal Act 1975 prohibiting the disclosure of information that might identify him.
THE PLANS PREPARED FOR TKCW
When a person becomes a participant in the NDIS, the National Disability Insurance Agency (NDIA) must help him or her prepare a plan which comprises a statement of the person's goals, objectives, aspirations and personal circumstances, and a statement of participant supports which sets out the supports that will be funded or provided through the NDIS: ss 32, 33(1) and (2).
The original plan
In August 2013, the CEO of the NDIA approved a plan for TKCW that included funding for speech and occupational therapy, training for his parents in Creative Meaning therapy, specialist assessment of “in-home family support”, and childcare at home for parent respite for up to five hours each month. We will call this plan, which came into effect on 30 August 2013, "the original plan".
The original plan did not include funding for a carer to take TKCW to recreational activities each week, a carer for his twin brother while his mother takes him to weekly therapy sessions, support at home for TKCW's mother who has a disability herself, or for The Listening Program (TLP) which is a form of sound therapy.
The amended plan
In October 2013, the NDIA amended the original plan to include carer support for two hours each week to enable TKCW to attend a recreational activity (fewer hours than his parents had requested). We will call this plan "the amended plan".
For reasons which we need not go into here, the amended plan did not comply with the NDIS Act and had no effect on the original plan, although it appears that funding for carer support for two hours each week was in fact provided.
On 31 October 2013, TKCW's parents asked the NDIA to review the decision in the original plan to refuse funding for TLP, and the decisions in the amended plan concerning carer and home support.
The third plan
On 22 January 2014, a delegate of the CEO set aside the original plan and made a new plan, effective 27 January 2014, which increased to three hours per week the carer support for TKCW to attend recreational activities. It did not include funding for TLP, a carer for TKCW’s brother while he attends therapy with his mother, or help at home for his mother.
THE DECISION UNDER REVIEW
On 20 February 2004, TKCW's mother, on his behalf, asked the Tribunal to review the decision dated 22 January 2014 not to fund TLP or a carer for TKCW's twin brother while he attends therapy.
In April 2014, the NDIA made a fourth plan and, on 2 July 2014, a fifth plan, both of which stated they were to start on 22 January 2014. Each made minor amendments to the third plan but left unchanged the decisions concerning TLP and the carer for TKCW's brother.
Some time was spent at the hearing identifying which decision the Tribunal has power to review. We understand the April 2014 and July 2014 plans were made on the initiative of the NDIA under s 48(2) of the NDIS Act. As they were not decisions made by a reviewer under s 100(6) of the Act, the Tribunal has no power to review them.
The parties agree, and we are satisfied, that the decision under review is the decision by the reviewer on 22 January 2014 to set aside the original plan and make a new plan in its place. That decision was made under s 100(6) of the Act and the Tribunal has power to review it.
In effect, then, we have to decide whether the NDIS should fund TLP for TKCW and whether the NDIS should fund a carer for TKCW's brother while TKCW attends speech and occupational therapy with his mother.
THE NDIS
Before going further, we will say something briefly about the NDIS generally and about funding for reasonable and necessary supports.
The objects of the NDIS Act are set out in s 3. As well as giving effect to Australia's obligations under the UN Convention on the Rights of Persons with Disabilities, they include:
·supporting the independence and social and economic participation of people with disability;
·providing reasonable and necessary supports for participants; and
·enabling people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports.
The NDIS provides support for people with disability in the form of: general supports by way of coordination, strategic and referral services or activities; funding for persons or entities to enable them to assist people with disability participate in economic and social life; and individual plans under which funding for reasonable and necessary supports is provided to persons who qualify to be participants in the NDIS.
To become a participant, a person must meet the access criteria in s 21(1) of the NDIS Act. TKCW meets the access criteria, in particular the early intervention requirements which means, in summary, that early intervention supports are likely to benefit him by reducing the effect of his disability, and his need for supports, in the future: s 25(1).
In giving effect to the objects of the Act, or performing functions and exercising powers under the Act, regard must be had to the need to ensure the financial sustainability of the NDIS: ss 3(3)(b) and 4(17).
FUNDING FOR REASONABLE AND NECESSARY SUPPORTS
Section 4 of the NDIS Act sets out general principles guiding actions under the NDIS Act. In relation to reasonable and necessary supports in particular, the principles are that:
(5) People with disability should be supported to receive reasonable and necessary supports, including early intervention supports.
…
(11) Reasonable and necessary supports for people with disability should:
(a) support people with disability to pursue their goals and maximise their independence; and
(b) support people with disability to live independently and be included in the community as fully participating citizens; and
(c) develop and support the capacity of people with disability to undertake activities that enable them to participate in the mainstream community and in employment.
Not every support that a participant requests will be provided or funded through the NDIS. Before 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 of the NDIA must be satisfied of all of the following criteria in s 34(1) in relation to each 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 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 Minister has made Rules to assist in deciding what are reasonable and necessary supports: National Disability Insurance Scheme (Supports for Participants) Rules 2013 (the Supports for Participants Rules). The Rules form part of the legislation that we must apply.
FUNDING FOR THE LISTENING PROGRAM FOR TKCW
The Listening Program
TLP is a form of listening therapy, also known as sound therapy, owned by Advanced Brain Technologies (ABT) whose website describes it as "a music listening therapy that provides engaging brain stimulation to improve performance in school, work and life".
TLP is an intensive program delivered at home under the supervision of a therapist trained in TLP. It is done in two 15-minute sessions twice a day for five consecutive days, followed by a break of two days, for up to 40 weeks. The program can be repeated as necessary. The user listens to sounds and music played at different frequencies through special headphones that allow for bone conduction as well as air conduction attached to an iPod-like device.
TLP Spectrum (TLPS), a more recent version available since 2012, uses classical music exclusively. The headphones and recordings cost $2995 and an additional Tune Belt, which protects the iPod and bone conduction amplifier, costs $39.50. When we refer to TLP, we generally mean it to include TLPS as well. Only trained TLP providers can purchase the program and equipment from ABT.
TKCW's mother told us that he has not used TLP or a similar program but she borrowed a set to see what it looked like and to see if TKCW would have any difficulty wearing the headphones. He wore them for about 20 minutes without any difficulty. She told us that he became suddenly much more aware of music in the car and had a burst of speech development, although she is cautious about attributing these effects to his brief use of TLP because he has had similar bursts of development after he has been unwell or the family has been on holiday.
Information about TLP and TLPS
We have read reports from CH, who is TKCW’s current treating occupational therapist, and from DB, a speech pathologist who has worked with his family since February 2013. Ms Veronica Steer, an occupational therapist who works predominantly with children and who uses TLP, gave evidence and Professor Jacqueline Roberts, who holds the Chair of Autism at the Autism Centre of Excellence at Griffith University, gave evidence by telephone.
We have also read reports from a range of sources about TLP and TLPS, some provided on behalf of TKCW’s mother and some by the NDIA.
CH’s reports
CH has provided two written reports. She states that, based on her initial assessment and subsequent observations during therapy with TKCW, he has "significant needs and is likely to require occupational therapy on a regular and long-term basis along with other services". She recommends that allowance be made in his funding plan for the family to purchase TLP to complement the therapy she is currently providing.
CH reports that she is trained in using TLP but has not used it with TKCW. It is not clear from her reports that she has used it, or is using it, with other children and, if so, in what numbers and with what results. Ms Steer told us that, as far as she knows, she and CH are the only occupational therapists currently using TLP in Adelaide but Ms Steer could not tell us more about CH’s practice. (It appears from another document provided to us which concerns a child who is not part of this application that at least one other occupational therapist in South Australia is using TLP).
In a report dated 25 June 2014, CH states that TLP would complement “DIR®Floortime focused Occupational Therapy by strengthening [TKCW’s] auditory system and the pre-requisites for regulation, sharing of attention, engagement and meaningful reciprocal interactions”. She says:
One cannot be definitive about what the therapeutic benefits of TLP Spectrum to [TKCW] will be given each individual has a unique sensory profile and needs. How [TKCW] responds will be unique to him. However, I would envisage and be hopeful that therapeutic benefits may be seen [in a range of reduced sound sensitivity, better regulatory state, better auditory processing, increased sharing of attention and engagement with significant others and increased initiation and sharing of his ideas].
DB’s report
In a report dated 2 May 2014, DB writes that she uses "DIR® FloortimeTM and Marte Meo approaches for language, social, emotional and play development”. She states that TKCW "would benefit from work on his auditory and visual processing using a program that best suits his needs and which is/are supported by his occupational therapist".
DB reports that she is not trained in TLP but she has worked with children and families who have used the program who have reported that "it has made a significant difference in their child's ability to regulate, attend, listen and understand what is being said" and this has had "a positive impact on the child's communication, social and play skills and ability to integrate into their community and educational settings".
Ms Steer’s evidence
Since graduating from the University of South Australia in 1975 with a Diploma in Technology (which became a Bachelor of Applied Science in Occupational Therapy in 1990), Ms Steer has worked predominantly in the field of paediatric and neuro-developmental occupational therapy for children with learning and neuro-motor difficulties. She also has a Diploma in Kinesiology. She has been a sole practitioner since 2005, with referrals mostly from her former practice, word-of-mouth and some psychologists.
Ms Steer told us that, between 1989 and 2005, she used mainly sensory integration therapy with children with learning difficulties including children on the autism spectrum. She was sceptical about the benefits of sound therapy until she looked at it more closely and underwent training. She became a sound therapist in 2000. She started using TLP in 2004.
Ms Steer explained that Auditory Integration Training (AIT) and TLP evolved from the work of Alfred Tomatis, a French ENT surgeon, in the 1950s. Whereas AIT is an intensive program over 10 hours in a clinic, TLP is a home-based program used over a longer period. TLPS is a calmer, gentler version of TLP that uses classical music exclusively with bone as well as air conduction. It is always used in conjunction with other therapies.
The neurophysiological principle underlying TLP is, in summary, that different frequencies correspond to different areas of brain and body function: low frequencies target the vestibular system and improve balance and spatial sense; middle frequencies target speech and language, and improve memory and attention, aspects of literacy and receptive language; higher frequencies target higher-level cortical areas. Based on observations of the individual child, his or her medical diagnosis, and formal testing if possible, TLP can be adjusted for different frequencies.
Ms Steer estimates she has used TLP with more than 100 children, predominantly children with auditory processing difficulties. Each was screened for suitability for TLP. Ms Steer said it is rare to see no change at all using TLP. Auditory processing skills improve on standardised testing and parents report the child “seems like they’ve grown up”. Articulation usually improves and socially they are more at ease; language may improve and visual motor skills and emotional regulation usually improve in children with autism to varying degrees, depending on the individual.
Ms Steer said she has seen only one case of an adverse effect in a child, when particular frequencies were used, but once they were adjusted, he made significant changes. She said she would not recommend TLP for certain children such as those who have uncontrolled seizures or epilepsy; repeated colds causing a blocked nose affecting the ears; or who show signs they may not be receptive to stimulation, such as children who have eczema or tummy pains due to food intolerances.
Asked how the benefits of TLP are measured in children under five, Ms Steer said a five-point scale is used based on observations by parents, teachers and carers. To determine the benefits of TLP as opposed to other therapy being used at the same time, a baseline is established when the child starts using TLP and compared with observations by parents and others after several months.
Although she has not formally assessed TKCW, she has observed him on two videos of approximately 30 seconds each which his mother sent her, and she has seen CH’s recommendation. Ms Steer believes it is highly likely he will benefit and, without TLP, he will remain highly visual and may be less focused on sequences of words, and he may be “dis-regulated,” meaning his ability to cope with his environment and the situations he is in will swing.
Ms Steer acknowledged that formal research into TLP is lacking but said clinical experience based on high quality clinical skills cannot be discounted. Although TLP is used by only a few occupational therapists in Adelaide, she said larger numbers are using it in some other States, and a lot of therapists “just don't get TLP”. Ms Steer also pointed out that the high cost means therapists in hospitals, for example, do not recommend it because they know most families cannot afford it.
Professor Roberts’ evidence
Professor Roberts has been a speech pathologist, teacher and special educator, and has worked in autism for over 30 years. She has conducted several reviews of the research literature on sound therapy, which are publicly available, and recently undertook a literature review on TLP at the request of the NDIA. She agrees that early intervention is important for children with autism but she says, based on research so far, she cannot recommend AIT or TLP.
Professor Roberts described to us the factors used to determine whether conclusions about a population as a whole, for example, children with autism, can be drawn from research findings. They include: sufficient numbers of subjects; reliable independent verification that the subjects have autism; measuring children before and after, preferably in blind tests; reliable measurement of relevant variables; procedural fidelity meaning the program is carried out in a way that is replicable and reliable; and independence of the research. She also described the Scientific Merit Rating Scale developed in 2009 by the US National Autism Centre which rates research along "five critical dimensions of experimental rigour”.
Professor Roberts told us that, of the various sound therapies, AIT has been the most thoroughly researched for effectiveness as a treatment for autism, and the research papers of quality rate quite highly for their reliability. However, it has not been shown to be more effective than chance in improving outcomes for children with autism.
Based on the research, Professor Roberts said, she could not recommended AIT as an intervention for autism. One of the largest trials of AIT, done some time ago in NSW, was a randomised controlled trial that is highly rated for its reliability. It found the AIT group and the control group improved equally, an outcome the researcher attributed to the effect of teaching the child to sit and listen through headphones to sound, rather than the actual attenuated sound.
Professor Roberts told us that she was unable to find research of sufficient quality to enable a recommendation one way or the other about TLP and she has been unable to find any research literature into TLPS. She referred us to The Cochrane Collaboration in NSW Auditory integration training and other sound therapies for autism spectrum disorder (ASD) which in 2011 reviewed the published research considered of sufficient quality. Six randomized controlled studies of AIT were found, involving 182 individuals aged from three to 39. The review concluded there was no evidence to support the benefits of AIT or that other sound therapies are effective as treatment for autism spectrum disorder.
In the absence of such evidence, Professor Roberts said, researchers typically consider whether an intervention makes sense in light of what is known from research-based evidence about autism itself. She said she had been unable to substantiate that TLP makes sense in terms of what is known about autism and about good practice in autism intervention.
In Professor Roberts’ opinion, to the extent that there is good quality research into sound therapies, it does not demonstrate a positive outcome. There are insufficient numbers from which to conclude with any confidence that any findings are not occurring by chance. She said there are particular difficulties in measuring outcomes in autism, partly because a lot of the processes are internal, and because children develop at such different rates.
Asked whether there was anything to suggest that sound therapies could actually be harmful, Professor Roberts said there are some cases documented in research of a deterioration of behaviour or exacerbation of sensory difficulties in some children using AIT but there were insufficient numbers to draw any general conclusion from this.
Professor Roberts acknowledged that she is not a TLP practitioner but says she understands the theory and the claims made on behalf of TLP. She says the claims are very broad in that it is said to benefit almost every aspect of functioning and she cannot see how it would be possible to accurately evaluate its effect on such a broad range of functions.
Asked whether it is possible to design a single case study with one child, Professor Roberts said it is, and a number of single case studies demonstrating the same effect is indication of the need for a full, properly designed and controlled study. However, she said, she is not aware of quality single subject designs in this area and none have been published in peer-reviewed journals. She agreed that clinical practice could provide emerging evidence, which is a precursor to research-based evidence, but only if it involved properly designed similar subject case studies; merely collecting anecdotal and testimonial evidence is not sufficient.
Professor Roberts acknowledged the importance of evidence-based practice, such as Ms Steer’s, and she agreed that, when working on an individual basis with children or adults, “it's the way to go” in terms of good practice and good individual practice for all professionals and, so far as clinical practice, what Ms Steer proposes for TKCW is reasonable. In her view, however, it cannot be said that it is effective and it lacks the sound research basis required for recommending any intervention.
Added complications in children with autism are determining the effect of one form of therapy when a child is undergoing several other forms at the same time, and children with autism typically have uneven rates of development, with spurts and plateaus that make it hard to know if they are related to the therapies.
Information from other sources
A number of articles and case studies about TLP have been provided on behalf of TKCW’s mother which attest to its benefits and its use in a number of organisations in the US and Australia. Some cannot be considered independent because they come from ABT, which owns TLP, or others who appear to have an interest in promoting TLP.
In March and June 2013, The American Occupational Therapy Association Inc published a two-part article, Sound Therapy: A Complementary Intervention for Individuals With Sensory Integration and Processing Disorders. Part 1 presents “the neurological and theoretical foundations of sound therapy … and share the types of outcomes seen when sound interventions are incorporated into a sensory integration-based occupational therapy (OT-SI) approach”. It states:
… the use of sound based therapies has become an integral and routine part of occupational therapy practice, particularly in the treatment of individuals with sensory integration/processing disorders. However, some occupational therapists express concern about diverging from traditional sensory integration procedures as well as the shortage of research regarding effectiveness of this approach.
The article refers to “more recent programs” including TLP which are used in conjunction with other programs and “a developing evidence base in the literature”. Part 2 reviews “the sound therapy programs that are most commonly used in occupational therapy practice”. It states “the findings on effectiveness from some research studies have been mixed” and reviews of AIT and Therapeutic Listening (another sound therapy) “report mixed results and concluded that additional research is needed on the efficacy of these programs”.
Part 2 also refers to a number of case studies and “brief research reports available on the Web sites of the sound therapy programs most commonly used by occupational therapists”. One analysis of five studies which evaluated the efficacy of the Tomatis Method found “positive effect sizes” in children with learning and communication disorders for five areas of functioning; the authors concluded that “although there were limitations in the study methodologies and sample sizes, there was evidence to support improved functioning”.
Another study found similar outcomes as did a third using Therapeutic Listening ® with pre-schoolers with developmental disabilities. “Positive outcomes” were reported using [TLP] for children with Down syndrome and for “a child with autism in sensory processing, motor skills, active listening, and daily behaviour”. Most recently, one study found “positive results in social, auditory listening, motor, behavioural, and sensory skills in children with autism using the home-based iLsTM program”. The article observed “[o]verall, evidence for the efficacy of some sound therapy programs is emerging”.
Advice from the Australian Music Therapy Association and the Occupational Therapy Association
The NDIA made enquiries with the Australian Music Therapy Association (AMTA) and the Occupational Therapy Association (OTA) about TLP. Both replied briefly by email to the effect that there is little or no research to support its benefits, although the AMTA said it had "begun to hear that sound therapy is being recommended by occupational therapists, in particular for children with autism [but] as far as we are aware it's only small numbers of OTs who are recommending it."
The emails from the AMTA and the OTA do not assist us. They do no more than confirm the paucity of research about the benefits or otherwise of TLP.
The criteria in s 34(1)
The NDIA says, and we agree, that the criteria in s 34(1) relevant to whether TLP should be funded in this case are:
(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; and
(d) the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice.
There is some overlap between these criteria, at least in this case. We will start by considering s 34(1)(d).
The Supports for Participants Rules
Part 1 of the Supports for Participants Rules describes what they are about by reference to objects in s 3 of the NDIS Act and principles in s 4. Part 3 sets out criteria or considerations that the CEO (and so the Tribunal) must use in deciding whether a support meets s 34(1)(d). It states:
3.2 In deciding whether the support will be, or is likely to be, effective and
beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:
(a)published and refereed literature and any consensus of expert opinion;
(b)the lived experience of the participant or their carers;
(c)anything the Agency has learned through delivery of the NDIS.
3.3In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.
What is "current good practice"?
The meaning of "current good practice" in s 34(l)(d) is not explained in the NDIS Act. Professor Roberts gave evidence that, in relation to autism, with which she is familiar, it means looking at the research literature and consistent elements of programs that have been proven to be effective.
Professor Roberts is the co-author the booklet Early Intervention for Children with Autism Spectrum Disorders: ‘Guidelines for Good Practice 2012’. It was based on the report of a 2011 review of "the current evidence of outcomes of early intervention (EI) for children with autism" and updated a review in 2006.
The booklet notes "a rapid increase in the types of programs and interventions available for young children with autism, along with substantial increase in the amount of research into the outcomes of interventions over the past six to seven years" and states that "[e]vidence-based treatment guidelines are particularly important in the field of autism where there has been considerable controversy surrounding the value of various treatments".
The authors state that, in the absence of direct evidence, parents and professionals need to be aware of the guidelines for good practice in autism intervention and the extent to which the rationale for any proposed intervention is based on evidence from research. They emphasise the lack of consistent results of trials, well-documented information about outcomes, and controlled studies to allow for confident claims about what types of interventions are best.
The booklet includes a section on Good Practice Guidelines which are described as "basic good practice principles fundamental to working with all young children with special needs and their families". They include assessment and intervention planning, individualised programming, monitoring, relevant program content, supportive teaching environments, predictability and routine, a functional approach to challenging behaviour, transition support, visual supports, family involvement, and a multidisciplinary collaborative approach. The booklet also emphasises that it is essential, when helping children with autism, to focus on the earliest years of development “since this is a critically important time for early learning which powerfully affects the child's future life course.”
Ms Steer says, and we accept, that she follows these Guidelines in her own practice and she is confident that CH would also do so. However, it seems to us that "good practice" in the Guidelines is used in a slightly different sense from s 34(l)(d). The Guidelines are about the assessment, planning and delivery of interventions, not about whether use of a particular form of intervention represents current good practice. As described by Professor Roberts, we understand “current good practice” in s 34(1)(d) to mean something broader; a practice which, even if not widely used, is recognised by sufficient numbers of practitioners as being based on sound evidence.
Section 34(1)(d) and s 3(g)
One of the objects of the NDIS Act is "to promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community": s 3(g). There may be some tension between this object and s 34(1)(d) which requires that the CEO of the NDIA (and so the Tribunal), be satisfied that a support "will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice" but, whatever innovative supports s 3(g) has in mind, they must be "of high quality". The most that we can say at this early point in the life of the NDIS is that we are bound to be satisfied of all of the criteria in s 34(1), and innovation, of itself, cannot displace those criteria.
TKCW's parents acknowledge that TLP is "unproven" but say the NDIA clearly stated in a leaflet on Early Intervention that:
While an emphasis on interventions that are effective and beneficial for the participant is appropriate, it is also important to recognise that existing evidence is often limited. Therefore the NDIS will also support potentially promising interventions which are likely to be beneficial, based on current good practice.
We understand from the NDIA representatives at the hearing that this leaflet may have been produced before the NDIS actually commenced. It seems to reflect the intention in s 3(g) but, in any event, we do not read it as suggesting an intention to do anything different from what is described in s 34(1)(d).
Consideration
In our view, there is insufficient information on which to say with any confidence that TLP will be, or is likely to be, effective and beneficial for TKCW having regard to current good practice. We acknowledge the report from the American Occupational Therapy Association Inc but we do not think it puts TLP higher than a therapy for which there are emerging signs of positive outcomes.
That is not to say that TLP would be of no benefit to TKCW or that TLP ought not be funded until such time as there is unarguable evidence of its benefits for children with autism. It may be many years before that sort of evidence is available. In the meantime, evidence, even if anecdotal, from a sufficient number of qualified therapists of positive outcomes in sufficient numbers of children may be enough to say that it should be regarded as current good practice.
In coming to this conclusion, we have borne in mind the provisions in the NDIS Act that require us to have regard to the need to ensure the financial sustainability of the scheme. In our view, it could undermine that financial sustainability to provide funding for a support whose effectiveness and benefits are largely unknown, especially where a reliable means of measuring any benefits of the support in a single case is lacking.
Does TLP represent value for money?
In relation to whether a support represents value for money, Part 3 of the Support for Participant Rules state:
3.1In deciding whether 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, the CEO is to consider the following matters:
(a)whether there are comparable supports which would achieve the same outcome at a substantially lower cost;
(b)whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long‑term benefit to, the participant;
(c)whether funding or provision of the support is likely to reduce the cost of the funding of supports for the participant in the long term (for example, some early intervention supports may be value for money given their potential to avoid or delay reliance on more costly supports);
(d)for supports that involve the provision of equipment or modifications:
i.the comparative cost of purchasing or leasing the equipment or modifications; and
ii.whether there are any expected changes in technology or the participant’s circumstances in the short term that would make it inappropriate to fund the equipment or modifications;
(e)whether the cost of the support is comparable to the cost of supports of the same kind that are provided in the area in which the participant resides;
(f)whether the support will increase the participant’s independence and reduce the participant’s need for other kinds of supports (for example, some home modifications may reduce a participant’s need for home care).
It is an imposing task to assess “value for money” when what is being weighed against cost is the future of a young child; an amount of $3000 seems paltry by comparison. However we do not think TLP represents value for money in this case because, for the reasons we have given, we cannot be confident of the benefits likely to be achieved.
“No disadvantage” - Helping Children with Autism funding
TKCW’s parents point to the stated policy of the Government that no person with a disability should be disadvantaged under the NDIS when compared with what they received previously under Commonwealth and State programs.
Up until 16 September 2013, when TKCW became a participant in the NDIS, funding was available to him through the Helping Children with Autism (HCWA) program administered by what is now the Commonwealth Department of Social Services. HCWA provides up to $6000 to families annually, a proportion of which could be spent on therapy, and the rest on resources or equipment.
TKCW’s parents say they did not expect HCWA funding to continue once he was a participant in the NDIS but it was ceased abruptly, without notice, when they could have applied for and used it toward the cost of TLP.
It is not entirely clear that funding from HCWA could be used for TLP but an email from a HCWA officer advises that it was eligible for funding “as a resource provided an occupational therapist says the resource is integral to the child’s treatment plan.” Against this is the HCWA Early Interventions Table which is included in the booklet by Professor Roberts and Margot Prior referred to earlier, published for what is now the Department of Social Services. According to the HCWA Table, AIT is not eligible for funding as an early intervention because, along with others, there is “insufficient or no established, emerging or best practice evidence”. This suggests TLP would also not be eligible under HCWA. However, even if TKCW’s parents could have put their allocation towards TLP, HCWA is a different program with different criteria from the NDIS.
The NDIA acknowledges the “no disadvantage” policy but says it refers to the transfer of participants from other programs and to a participant’s overall package of supports under the NDIS rather than a continuing entitlement to every form of support received before the NDIS commenced. The NDIA points to the overall increase in TKCW’s funding from $6000 a year under HCWA to more than $28,000 a year under the NDIS. We accept that submission.
FUNDING FOR A CARER FOR TKCW'S BROTHER WHILE HE ATTENDS THERAPY
TKCW attends speech therapy for one hour each Thursday morning, alternating between two therapists who use slightly different techniques but who liaise with each other. About once a term, one of the therapists comes to his home to observe his speech in the family environment. His parents also use an occupational therapist they have seen in Sydney and who occasionally visits them in Adelaide.
TKCW was also attending occupational therapy each Wednesday morning but, for a combination of reasons, since around the beginning of 2014 he has been attending monthly. His speech and occupational therapy is funded through the NDIS.
It is not in dispute that TKCW's mother should attend these appointments with him and that therapy is more effective without his brother being present. The boys are pre-school age meaning care needs to be arranged for TKCW’s brother while he attends these appointments.
TKCW's mother has a moderate to severe disability which makes it difficult for her to manage routine household tasks with the children. When she and TKCW's father first applied to the NDIA, they asked for funding for someone to help her with the children's morning and evening routines. The NDIA decided not to approve funding on the grounds, firstly, that she required help because of her own disability rather than because of TKCW's disability and, secondly, that the cost of child care for his brother was a day to day living cost not attributable to TKCW's disability support needs (see Support for Participant Rules 5.1 (b) and (d).)
Since November 2013, TKCW's mother has received assistance with in-home support from Disability South Australia (DSA), with whom she is registered, with tasks such as cleaning, going to the shops and hanging out washing. She and the helper have arranged the helper's hours so that she cares for TKCW's brother while TKCW attends therapy appointments with his mother. TKCW's mother would prefer to allocate some of the hours to helping in the evening when she finds things more demanding, but she needs someone to care for TKCW’s brother.
TKCW's mother gave evidence that, if the NDIA funded care for TKCW's brother, she would not need her full allocation of DSA hours; she would reduce them so that the net benefit to her, and the net result for the government, would be the same. If she were unable to get funding through the NDIS, she would continue to draw upon DSA funding to provide a carer for TKCW's brother while she takes TKCW to therapy.
Although there is nothing to suggest that DSA funding will be discontinued, TKCW's mother says it cannot be guaranteed and the present arrangement for child care depends upon the cooperation of the current helper. She also says that, by using the helper for child care, the arrangement compromises the support she is supposed to get in other areas.
TKCW's parents do not wish to use registered day care providers in their local area, partly because of practical difficulties finding childcare locally and the inflexible hours they would need to book it for; partly because they are concerned that, if his brother did not wish to be dropped off at childcare, TKCW would probably flatly refuse to go to therapy and, alternatively, if his brother was happy to be dropped at childcare, TKCW would want to go with him and would refuse to go to therapy; and, for reasons of their religion, they have never intended putting their children in child care and would prefer not to do so. They do not have family or friends who will be able to care for him in the future.
Consideration
One of the principles in s 4 of the NDIS Act is that the role of families, carers and other significant persons in the lives of persons with disability is to be acknowledged and respected. Section 34(1)(e) also recognises that it may be reasonable to expect families, carers, informal networks and the community to provide support.
In our view this is not a support that should be funded through the NDIS. The need for childcare for TKCW's brother is being met at present by the helper provided by DSA. We understand that this arrangement may not continue indefinitely but there is nothing to suggest that it will not continue at least for the life of TKCW's present plan. It is hard to see why it should be considered a reasonable and necessary support at this time and we are not satisfied that it is.
We accept that using some of the hours allocated to household help, and organising the helper's hours around TKCW's therapist appointments, is not entirely convenient for TKCW's mother. However, the hours are relatively few, and we think it is reasonable for the family to make what is a relatively minor adjustment. As such, funding this support through the NDIS would not meet s 34(1)(e) of the NDIS Act.
CONCLUSION
For these reasons, we affirm the decision under review.
I certify that the preceding 95 (ninety-five) paragraphs are a true copy of the reasons for the decision herein of Senior Member Jill Toohey and Ian Thompson, Member. .............................................
Associate
Dated 23 July 2014
Date(s) of hearing 10 and 11 July 2014 Solicitors for the Applicant
Counsel for the Applicant
Tara Simpson, Legal Services Commission of SA
Mr Michael Mills
Counsel for the Respondent
Mr Michael Sassella, NDIA
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