AEIOU Foundation submission to the
Parliamentary Joint Standing Committee on the NDIS
Inquiry: NDIS Planning
Introduction
AEIOU Foundation is the leading provider of early intervention service for children with Autism in Australia. Following the introduction of the NDIS, AEIOU has actively engaged key figures in government and the NDIA to advocate for improvements to the system. Everything tabled in the submission below has been discussed with the Minister for the NDIS (August 2019), the previous NDIA CEO, the current Acting NDIA CEO, and several NDIA executives at various points over the last two years. We welcome this latest opportunity to suggest solutions to strengthen the NDIS.
AEIOU has been in existence since 2005 with the purpose of delivering early intervention therapy services, to children with severe to profound Autism. The children are aged between 2 and 6 years of age.
AEIOU has nine (9) Centres in Queensland and another in South Australia. Based on the rapid growth in demand for AEIOU services, AEIOU will open a Centre in the ACT and another in Melbourne within the year. Again, based on demand and with Federal Government support, AEIOU is expanding its offerings in four (4) of the QLD Centres.
Executive Summary
To date, the entire NDIS Planning process can be described as being very slow, with inconsistent and often times, inequitable outcomes for children with Autism.
There is empirical evidence that proves the earlier the intervention commences for children with Autism the better outcomes for the child, the family and the community. There are also significant (and proven) economic benefits to the community with early intervention. Equally, effective early intervention allows for the child’s parents and carers to re-enter the workforce or engage in study.
The reality is however, that families are experiencing very long delays in receiving their Plans at a time when every day that is lost in early intervention, is critical. It is not uncommon, for families to wait for six (6) months for an Autism diagnosis if in the public health system (outside the control of the NDIS) but then, wait a further six (6) months or more, to be offered a suitable NDIS Plan.
It is the view of AEIOU that the primary causes for delays, inconsistent outcomes and poor participant experience is the absence of suitably qualified, trained, enabled and accountable ECEI Partner Planners and NDIS Planners.
Equally, it is the view of AEIOU that Service Providers can play a greater part in having children receive service many months quicker than is the case now, without any financial impact on the NDIS or any impact on the ECEI Partners – see later.
a) The experience, expertise and qualifications of Planners. This is a significant issue for Providers and Participants. It seems that Planners are trained at a basic level in the processes, legislation and the regulations but many have little care for processing Plans quickly and efficiently and engaging with families and carers with some empathy and care.
Others bring their own opinions to the table on the validity, value and worth of things such as early intervention and in some cases, the value of the Provider. This has a disabling impact on those that care for the child and those that are trying to deliver the therapy essential to the child’s development and goals.
It might be argued that in some respects it is better that the Planners do not come from disability background, to avoid a bias (unconscious or not) that are influencing the process and the outcome. Perhaps social workers or those with counselling backgrounds may be a better natural fit. Typically one would expect these people would have more empathy, listening skills and the ability to connect with Carers and with other stakeholders
b) The ability of Planners to understand and address complex needs For clarity it is assumed “complex needs’’ refers to the needs of the Participant.
The term complex needs is not defined clearly, making it subjective and again, a Planner’s view on this can be coloured by previous experience and trying to compare disability supports in monetary terms. Discussions with ECEI Partners suggest that budgets play a part in what is deemed as complex and what is not, which is not in accord of the intent behind the NDIS.
The other emerging issue is that ECEI Partners and Planners are struggling to keep up with the systematic and rapidly changing rules under which they work. Even as a Provider, we hear things on the grapevine as opposed to being formally advised of changes.
c) The ongoing training and professional development of Planners This is difficult to comment in some ways. The manner in which the NDIS rolled out in SE Qld suggests Planners’ training, induction and education was also rushed. As a recommendation, Planners should be funded for regular (say 6 monthly) refreshers on changes in the processes, legislation, trends etc. as well as how to better engage with Participants and their Carers.
d) The overall number of Planners relative to the demand for Plans Based on the earlier comments it appears that the number of suitably qualified, trained, enabled and accountable ECEI Partners and Planners is insufficient to deliver on at least one of the goals of the NDIS. That is ’’….the NDIS takes a lifetime approach, investing in people with disability early to improve their outcomes later in life….’’
For effective planning in a consultative and meaningful manner there has to be an investment in the numbers of Planners, an investment in their training and a genuine commitment to reducing red tape to enable better Participant outcomes.
e) Participant involvement in planning processes and the efficacy of introducing draft Plans. It is the view of AEIOU and many others that the use of draft Plans should not have stopped. These Plans allowed for earlier discussion on errors/omission/oversights rather than develop into disputes under the current process of unscheduled reviews. The latter is stressful to Carers, it delays the
intervention therapy (in the case of AEIOU) and adds to the cost of the Provider, which it cannot recoup.
The involvement of Carers of children with Autism is critical to better outcomes for Participants. As critical however is for ECEI Partners and Planners to ensure they have advised Carers what they may be entitled to under the fair and reasonable test.
For many, especially those with lower levels of personal education or from CALD backgrounds, it is a case of ‘’they don’t know, what they don’t know’’. This extends to things like intensive supports, in home support etc.
f) The incidence, severity and impact of Plan gaps. This is a major issue for Providers and has a direct impact of the financial position and sustainability of the Provider. As a generalisation, gaps occur too frequently with the potential for direct and poor outcomes for Participants. Where gaps exist, the Provider needs to make a decision on whether the Participant can continue to receive therapy from the Provider. Where the Provider makes the decision to suspend service (based on its financial position), there are obvious outcomes here including the impact on the mental health of the Carers.
There is an urgent need for clarity for the ECEI Partners and Planners on what to do when a gap does exist. Currently, this is a grey area and again, the impact can affect the Carer, the child and the Service provider.
g) The reassessment process, including incidence and impact of funding changes The incidence is extremely high as is its impact and all through no fault of the Participant or Carer. Impacts include but are not limited to;
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Through these lengthy processes, essential therapy service can be delayed
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Possible suspension of service (refer to earlier comments)
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Even more increases in the administration workload of Providers - re-creating service bookings etc.
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Chasing up payments (recovering funds from gaps) h) The review process and the means to streamline it Firstly, Carers must be better equipped with knowledge and information, to ensure reasonable and necessary supports are understood, sought and provided. As referred to above, many Carers simply do not know what they are eligible for in terms of supports, making the review process simply ineffective.
There is a view that ECEI Partners and Planners are not always open and transparent on the issue and some are holding back information for budgetary reasons.
Overall, the review process is poorly understood by stakeholders contributing to a poor Participant outcome.
It is the view of AEIOU that rather than focus on the solution to ‘streamline’ the review process, the NDIA should have a greater focus and a greater commitment to getting to the right decision for the Participant, the first time around so a review is simply not needed.
That comes down to Carers having full knowledge and information around the process and a full understanding of what supports they are eligible for. It also needs for ECEI Partners to have a much greater, client centred approach.
This NDIA focus should extend to measuring the effectiveness of their ECEI Partners, by measuring the percentage of Plans where reviews are required. This is a measure of ECEI performance. Those Partners with high percentages of reviews may have some systemic issues in their operation.
Some general comments on this topic of reviews:
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It is known in some cases Planners are completing review request forms
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Carers advise they have been influenced by Planners to cease or withdraw their requests for a review
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Carers advise they are given no guidance or direction on what is needed, to support their request for a review. Again, people who are unable to be strong advocates for their child, (lower socio – economic and CALD backgrounds are at a distinct disadvantage)
i) The incidence of appeals to the AAT and possible measures to reduce this number AEIOU has not been involved in any cases that have been elevated to the AAT. That said, there are a large number of cases, where this was avoided at the last moment. So, in the end the right decision was made but as we have outlined previously at the expense of the child with delayed entry and at the expense of the Carers mental health.
It simply comes down to getting to the right decision (fair & reasonable) at the beginning of a transparent, efficient and equitable process.
j) The circumstances in which Plans can be automatically rolled over This in itself would give greater credibility to the NDIA processes and its intent.
It would seem logical that children with severe to profound disability (such as Autism) should have Plans either initially approved for a two (2) years period or if approved for one (1) year automatically rolled out. Given the focus is on children with severe to profound Autism this should extend to the child turns 7 years of age, whereas currently it is ‘’school age’’.
As a Provider, AEIOU would reasonably expect that it would need to table a report to validate the automatic rollover, but this while will not lower AEIOUs workload, it would provide much less angst and stress for Carers.
There has to be an element of trust in Providers here. If the NDIA was not comfortable with a carte blanche process that all Plans for all 3-6 years olds be automatically be rolled over, perhaps an accreditation system could be installed. So for the better known and better structured Providers this process could be applied.
As the child moves into the LAC space, of course a reassessment is needed.
k) The circumstances in which longer Plans could be introduced Refer point above re approving a two (2) year Plan. More efficient for all concerned, provides greater certainty and support for Carers and with less emotional stress that is caused by reviews etc.
l) The adequacy of the Planning process for rural and regional participants The AEIOU observation has been that in rural areas, the overall experience is slightly better with smaller workloads for Planners, coupled with less staff turnover amongst the Planner cohort. It should be noted from the AEIOU experience, rural areas are major regional cities (Townsville, Toowoomba, Bundaberg) and not the small rural towns.