Submission for the Inquiry into NDIS Planning:
Dear Sir/Madam,
I am writing to make a submission for the inquiry and I am requesting partial confidentiality (I do not wish my name to be disclosed), as we have not disclosed my son’s diagnosis outside of immediate family.
I am an endocrinologist and have trained 20 years in the health system (the majority in NSW). I am also the mother of an almost 5-year old son with autism. When the diagnosis came my husband and I were devastated. With our medical backgrounds, we immediately conducted a literature review on evidence based approaches to managing autism and its’ challenges. We quickly found that Applied Behaviour Analysis (ABA) therapy had the most evidence behind it. I would also state that my husband and I are not only trained to read, interpret and apply medical literature, we also contribute to it and are both published in Australian and international medical journals. We started our son on an intensive ABA based program of 20 hours per week and within 3 months he had become verbal, despite having speech pathology sessions for a full 6 months prior to the diagnosis with little progress. He is now about to start school in a mainstream environment with minimal supports. During this period the NDIA rolled out, and we like many other families in the autism community experienced inconsistency, harmful misconceptions, inefficiency, and time delays. I was stunned to find out that the NDIA were adversarial in their approach to funding ABA. I have summarised the issues below for your reference:
- The planners we came into contact with during our 2-3 year journey with the NDIS were inexperienced, had no knowledge of autism or current best practice in the field
The NDIA are not endorsing best practice therapy for children with autism. Randomised controlled trial (RCT) evidence supports the use of 20 hours of weekly Applied Behaviour Analysis (ABA) therapy in these children, over the use of combined OT/Speech path and other early intervention approaches. Yet despite this evidence, the majority of families are being told that the NDIA will not fund ABA therapy. It is currently estimated that 1 in 60 children in Australia have a diagnosis of ASD and this figure is rapidly rising. These children struggle with socialisation, communication, and repetitive stereotyped behaviours. If they do not receive adequate therapy many children who are non-verbal miss out on the opportunity to develop effective communication skills. Ultimately this costs the community more with loss of productivity and institutionalism. There is no evidence to support the ECEI approach in children with autism. In other areas of medicine, for a therapy to be endorsed and subsided by the government on the PBS, RCT evidence of benefit needs to be demonstrated. The NDIS’s own commissioned paper in 2016 (attached to this email) supports the use of 20 hours of intensive intervention in preschool aged children with autism.
The planners we came into contact with during our NDIS journey had little to no knowledge of autism, the complex challenges it presents, or current best practice therapy. Many of them had never heard of ABA and many of them continued to put forward the ECEI approach which does not have comparable levels of evidence in children with autism. We have found that many planners are generalising treatment models used for children with other disabilities (eg hearing impairment) to children with autism.
Proposed solution: The NDIS needs to adequately educate and train planners. Given that participants with autism form such a large part of the scheme I would suggest that all planners receive a basic education and training package in autism, and current evidence-based best practice therapy. I would also suggest a communication module as many of the planners we encountered were not compassionate, or supportive but rather adversarial in their manner.
- We felt the planners had limited ability to understand or address complex needs Many of the planners we encountered did not understand or appreciate the complex needs of a child with autism. Furthermore, many of the planners were insensitive and adversarial in their manner seeing themselves more as “gatekeepers of NDIS funds” than facilitators of families and children with disabilities.
It was suggested to us by one planner, that we provide the therapy ourselves. There is no evidence in the literature to support parents being the primary deliverers of therapy. Families need to be actively and intimately involved in therapy. We generalise the skills our son is learning in therapy across different settings, prepare resources, attend team meetings, learn skills to deal with behavioural challenges, and sensory issues but we do NOT run or oversee his program. Our son has made the sort of gains that he has because we have been actively involved. We are not therapists and we employ trained therapists who have experience working with children with autism. I feel this expectation is beyond what is reasonable to expect parents to provide. I have another child who I cannot simply ignore in order to provide my son with the intensive therapy he needs. In addition, my husband and I also work. Our son does not forgo his right to enjoy a normal relationship with his parents simply because he has autism. My primary role is as my son’s mother not as his therapist. In every interaction I have with him whether it be play time, meal time, bath time, or bed time we work to actively promote his development and generalise skills. This is physically, mentally, and emotionally exhausting and not particularly enjoyable. I would love to just spend time with my son and enjoy him. For the NDIA to tell me I am not in fact doing enough and that in addition I should be providing the majority of hours of his intensive intervention is not only unreasonable but offensive.
Proposed solution: Adequate education, ongoing training, and professional development of planners is needed. The NDIA could work in concert with peak bodies and autism advocacy organisations to provide adequate education.
- There were massive time delays in accessing early intervention due to the imbalance between demand for plans and numbers of planners
It is well-known that children’s brains exhibit the most plasticity in the early years hence the importance of early intervention to “re-train” the brain. Despite this, families are waiting months to years to have a first planning meeting with the NDIS organised - this is critical time in the child’s life and important months of therapy opportunity that have been lost. In our own case, it was months between when we became NDIS participants and when we had our first planning meeting, months to then receive our first plan, more months to then go through the inefficient review process, and in the end approximately 18 months before we got our revised 1st plan after appeal to the AAT. We were told repeatedly this was because of the large volume of reviews the NDIS had received and lack of staff.
In medicine, we consistently triage competing needs of patients. A patient with a life-threatening event will be seen before a patient waiting to have a wound sutured even if they presented earlier. I would suggest that early intervention needs to be appropriately triaged as this is a critical time period which research has consistently shown to be of utmost importance in shaping the child’s ability to speak, engage socially, and ultimately participate and engage in mainstream and community environments.
Proposed solution: I would suggest that in the time-critical area of early intervention the NDIA institute and strictly adhere to a minimum of a 6-week period for institution of a 1st plan from the time the participant is accepted onto the scheme. In addition, I would suggest streamlining of the application process. While it is well known that every individual will have unique needs it is universally recommended by medical literature and by the NDIS’s own commissioned report in 2016 regarding supports for preschool children with autism that 20 hours of intensive intervention is recommended for ALL children with autism, regardless of the level of autism. I would suggest that all preschool aged children with autism receive best practice therapy consisting of 20 hours per week of intensive intervention as a standard minimum package, with additional/specific needs of the child and family to be considered on top of this. This would reduce demands placed on staff, and also minimise the emotional drain on families who are already struggling to deal with the grief that comes from having a child with a disability. Furthermore, this would also reduce gaps between families who are more able to advocate for themselves (better educated, English as a 1st language, higher socioeconomic status, etc) and those who are less able to do so.
- An inefficient, lengthy, and emotionally draining review process with large gaps between funding
As detailed above, our review process was lengthy and seemed to be filled with many unnecessary steps. We were consistently told that we had 3 months in which to lodge a review, or 29 days to lodge with the Tribunal, but the NDIA did not impose any time restrictions on its’ own processes. For instance, there was no definite period in which we were to be told of the review decision. And once we were at the AAT stage the NDIA consistently tried to request more time between meetings and certainly did not act as the “model litigant”.
Proposed solution: I would suggest removing some of the steps in the process. For instance, why is it necessary for someone to review if an actual review needs to happen? Surely if a family is unhappy with a plan and feel their needs are not being met, that is grounds enough to review the decision. Streamlining the entire process would help as would adequate education, and training of the planners reviewing these decisions. I would suggest the formation of a specific autism review team who are highly trained in the complex needs of people with autism and who are also abreast with current research on best practice evidence-based therapies. I would also suggest that for pre-school children who are at least 2 years from school that 2 year plans be considered with a progress report at the one-year mark to ensure ongoing development. This would significantly reduce workload and time delays, while also ensuring that children do not experience any gaps in therapy.
- A high incidence of ABA cases proceeding to the AAT and the majority being settled just prior to hearing
The majority of cases requesting ABA or intensive intervention have proceeded to the AAT and the majority have settled with favourable outcomes just prior to hearing. In our own case, the NDIA agreed to all of our requests including the institution of a longer plan, and reimbursement for the months we had spent waiting between when the funds had run out and the date of the conciliation meeting. It struck me what a colossal waste of funds, time and energy the whole process had taken.
Proposed solution: The establishment of a dedicated resolution team with appropriate training and education in the field of autism. I understand this team has now been formed and is in operation. This team should be enabled prior to AAT lodgement.
- Lack of recognition of the BCBA qualification on NDIS documents and pricing guidelines
The NDIA are not endorsing best practice therapy for children with autism. I am stunned that “music therapists” are listed on the NDIA price guideline but behaviour therapists with BCBA qualifications are not. This is despite the large body of evidence
that supports the practice of ABA in preschool children with autism, which is much greater than the body of evidence supporting the benefits of music therapy. Certainly in any cost-benefit calculations and value-for-money discussions I cannot believe that the NDIA could possibly find ABA to be inferior to music therapy.
Proposed solution: I would suggest the formation of an expert team of medical advisors such as developmental paediatricians, speech pathologists, behaviour therapists, and other experts in the field of autism to advise the NDIA of current trials, new evidence, and best-practice therapies. This ensures that the NDIA is only funding therapies that are supported by a body of medical evidence, published in peer-reviewed journals and subject to stringent ethical and professional guidelines.
A diagnosis of autism is devastating. At a time when families are struggling to make sense of the diagnosis, cope with the day-to-day challenges of having a child with autism, and advocate for their children, it is discouraging that it is so difficult to find help, and appropriate resources. I am medically trained in the Australian healthcare system – 6 years of medical school, 2 years of internship and residency, 3 years of basic physician training, 3 years of advanced training in endocrinology, and 6 years as a consultant – if I found the system difficult to navigate I can only imagine what other less well-informed families are facing. I hope that in taking these steps, I can advocate not only for my precious son, but for other families and children who are facing the same challenges.