Joint Standing Committee on the National Prepared by Mark Toomey,
Disability Insurance Scheme
Parliament House
Canberra ACT 2600
Submission to the Joint Standing Committee on the National Disability
Insurance Scheme
Dear Members and Senators,
Herewith I present details of my experience as Plan Nominee for my disabled adult son, with the planning processes of the NDIS. My submission is in two sections: a Preamble and Context section which presents a confidential introduction to my submission; and a Specific Response section which addresses the points set out for consideration by your committee.
I respectfully request that the Preamble and Context section of my submission be held confidential, as it contains a substantial amount of personal detail which is essential to your understanding of my submission, but which is of no material interest to the general public. For clarity, I have used italic font for the information that should remain confidential.
Preamble and Context. This has been removed from this version of the submission.
Specific Response
In this section of my submission, I respond specifically to the questions posed by the inquiry. I am happy for this section to be placed on the public record.
Introduction
I write this submission as the father of a 40 year old NDIS participant who lives with a severe acquired brain injury (ABI), that manifests as multiple physical and cognitive deficits. I live in country Victoria, some 90 minutes drive from my son’s current residence in a Supported Independent Living (SIL) facility. He has been clinically assessed as requiring 24 by 7 supervision and substantial support for his daily activities. Notwithstanding his disabilities, he has exhibited determination and success in increasing his mobility, though his mobility is still primarily by wheelchair.
My son’s first NDIS plans were adequate to his then needs, though far from generous. With increasing mobility and fitness, his needs have increased. However, his latest plan, produced through an unacceptably chaotic process, has reduced his funding and therefore his support levels, to the point where he is now little more than an unsupervised prisoner in an open prison. In this situation, his Behaviours of Concern have grown to the point where he is now at grave risk of self harm while I am at the point of despair over resolving the problems.
Complaints to the NDIS have experienced unacceptably slow response, illustrated by its transition from the complaints officer to the resolutions officer taking at least 15 days.
I do not expect you to resolve the immediate problem through direct intervention – that is the task of my local member, Mr Broadbent, who has remained fully aware of our journey. I expect you to
drive resolution of the underlying problems in the design and operation of the NDIS, which among other things, lacks transparency and accountability.
I now address the points of reference for your enquiry, and close with some comments based on my extensive professional experience in organisation development and change.
The experience, expertise and qualifications of planners; Since my son’s entry to the NDIS, I have formed the view that the capability of planners to deliver effective and fair plans is at best highly variable. We have directly experienced only three planners and of those three I would suggest that only one was competent to perform the task.
I have no direct knowledge of the experience expertise and qualifications required of planners. I have however seen discussions on social media repeatedly asserting that planners are being employed with no qualifications and no experience. Clearly if this is the case, newly employed planners necessarily must undergo significant training, and there must be a grading scale on which the competences of individual planners can be evaluated, and further development planned.
With respect to the planner who conducted our last planning meeting and prepared our current plan, I can say with certainty that the planner did not have a complete and accurate understanding of the provisions that apply to a person in my son’s situation. For example, the planner stated clearly to me that my son was not eligible for a transport allowance because he owns his own vehicle. In fact, a transport allowance applies to any person who, because of the disabilities, is unable to safely use public transport. My son’s disabilities mean that he is completely unable to safely use public transport, and that is why he owns his own vehicle.
The ability of planners to understand and address complex needs; In my son’s case, it seems abundantly clear that the most recent planner has no understanding of the complexities attached to my son’s cognitive deficits. The plan which has been provided might be less problematic for a person who does not have cognitive issues and therefore does not require 24 by 7 supervision.
It is noteworthy that this planner spoke disparagingly of the expert reports submitted by my son’s allied health professionals, claiming that they were not in the required format and therefore could not be used. We asked the planner, on multiple occasions, to provide information about the required format and the method by which we should obtain and submit replacement reports, but these requests were all ignored.
Through conversation with friends who also have adult dependants who are NDIS clients, I have come to understand that their planners have failed to understand a range of complexities associated with extreme anxiety and behavioural issues on the one hand and geographic and social isolation on the other hand.
It is my view that there needs to be a comprehensive set of qualifications required for planners and a career path for planners which incorporates specialized training and assessment of capability to deal with a diverse range of complex and less complex cases.
The ongoing training and professional development of planners; If there is any current program of training and professional development of planners, it must be rated as extremely unsatisfactory. In an effective system of training, professional development and qualifications management, it should be expected that consistent outcomes would be produced by several different planners addressing a representative sample case.
Planners must develop more than the technical skills required to enter a plan into the NDIS computer system. Planners must develop the interpersonal skills required to engage with an NDIS client and the client’s supporters. They must develop the skills to prepare and consider alternative scenarios and to assess scenarios against a range of client focused criteria.
The overall number of planners relative to the demand for plans; I have no information about the number of planners or the demand for plans. I can only say that for my son the delay in assigning planners seems to indicate that there is an ongoing and chronic shortage of planners. Social media discussions tend to reinforce this view.
Delays in assignment of planners seem to prevail for both established and new participants in the NDIS. There should be very clearly defined and appropriate targets to drive prompt assignment of planners and other specialists, whenever and wherever they are required. Performance against these targets should be subject to constant monitoring and near real time reporting, with prompt action being taken whenever performance falls below an acceptable level.
Participant involvement in planning processes and the efficacy of introducing draft plans; The current planning process appears designed to substantially exclude the participant and participant representatives from the planning process. Participants and their representatives are able to prepare a submission and supporting materials for consideration by the planner, but there is no template, guidance, or support for the participant through this process other than if the participant chooses to engage a costly independent expert to perform the task.
The planning meeting appears notionally designed as an opportunity for the participant and planner to discuss the participants needs and goals and to discuss aspects of the supports requested. But, in our experience planners have had little interest in understanding my son’s needs and goals, and are more focused on what he can’t have. This gives the impression that the planners themselves are unaware of how to build a plan and do not want to deal with complex plans other than in isolation.
Professional development training in most marketplaces generally promotes the value of team work, and the word “team” is often presented as an acronym for “Together, Everybody Achieves More”. At present, however unintended, the planning process seems to foster the development of an adversarial or combative engagement, rather than the consultative, cooperative and supportive approach that would emerge if the planner engaged as part of the participant’s TEAM, which necessarily includes the participant and those who support them.
The current planning process offers no opportunity for review, discussion and debate about the content of the plan which has been developed. There is substantial risk that substandard and inadequate plans will be presented to participants, thereby creating significant difficulty for the participants concerned. With the complaints and review process being equally as cumbersome and opaque as the planning process, many participants will be reluctant to raise objections against relatively minor fault in their plans. On the other hand, where participants do see the need to raise an objection, the process creates significant internal overhead and workload for the NDIS, as well as for the participant. It also creates the risk, which for us has now become real, of additional delays in accessing appropriate levels of support.
It is an extraordinary concept that NDIS plans are produced and regarded as a fait accompli, where the recipient of the plan effectively has few rights to contribute to and no rights to fully participate in the design of the plan. This situation seems to position NDIS participation and support as a
benevolent bequest rather than a human right. There seems to be a begging context attached to NDIS planning, in which those who can beg most effectively through a combination of pre-plan submissions and a lucky draw on planner can get very generous plans, while those who are unlucky find themselves with substandard plans.
A comprehensive overhaul of the planning process, combined with a robust program of education for planners and other participants, is essential to making the planning process effective, efficient, acceptable and fair.
The planning process must be made highly transparent and fully measurable. Participants and those supporting them must be able to see exactly how a plan is progressing and must be able to review, comment on, and seek adjustment to the plan, at key points in its development. Merely presenting a draft plan as the final step in plan development does not significantly improve the situation. Final drafts typically embody substantial resistance to change and carry the risk that the participant will be disempowered relative to the power of the planner. Stage drafts put the planner and the participant on a much more equal footing and allow other interested parties to contribute to the review process.
It should be expected that a well-developed planning process, conducted by properly trained professionals, with full and continuing engagement of participants and there supports, will produce plans that do not result in a significant rate of objections or reviews that are merely addressing failures in the planning process.
In common with contemporary practice in the private sector, assessment of planner performance should include a substantial input from the participants and supports with whom the planners work. As amply demonstrated on numerous digital era platforms, nothing will drive a service provider (ie, a planner) to high and consistent performance more than transparent customer ratings.
The incidence, severity and impact of plan gaps; I am only able to address this point in the context of my son’s plan. The plan under which we currently operate has major gaps win compared to the previous year’s plan, and more substantial gaps compared to the level of support requested in my son’s pre-plan submission.
The gaps in the present plan drastically curtail my son’s participation in family and community activity, in sport and recreation, in developing new social connections, and in building capacity to overcome his disabilities. There is a severe risk that they also curtail my son’s development of a relationship with his son, who cannot at present live with him.
The reassessment process, including the incidence and impact of funding changes; I am unable to comment on the re assessment process as this has not yet occurred in our case.
The review process and means to streamline it; The best way to streamline a review process is to make it unnecessary. By acting to ensure that all plans are produced to a high standard of relevance and fairness, through a robust process, performed by properly trained professionals, there should be near total elimination of requests for review, along with the anxiety and other negative impacts associated with previews.
If a review process is retained, it too must be designed to be efficient, effective and acceptable, embodying complete transparency, with robust process, performed by properly trained professionals. As with planning, the review process must be subject to ongoing performance measurement against targets that are agreed with all stakeholders.
It is now evident to me that the process of handling complaints and reviews requires that the issue traverses several “stovepipes” within the NDIS structure. Our complaint went to the complaints team; is now with the resolutions team; and eventually will get to a planner. Already we have seen that ownership of our complaint was lost when it moved to the resolutions team, and we expect that ownership may well be lost again when it moves to the planner.
An efficient complaints and review process requires continuity of ownership and case management. Complaints handlers should retain accountability for complaints from the point of receipt by the NDIS to the point of agreement by the complainer that the complaint is resolved.
The incidence of appeals to the AAT and possible measures to reduce the number; I have indirect experience of appeals to the AAT, through friendship with a family that has been to AAT twice. What I have found extraordinary is that this family has needed to take the same situation to the AAT on two separate occasions, obtaining a result substantially in their favour on each occasion. That family’s situation is at the extreme end of complexity, which clearly challenges assumptions imbedded in the current NDIS policies and funding rules. It is deeply unfortunate that the NDIS was unable to develop a satisfactory plan without going to AAT in the first instance. It is incomprehensible and utterly unacceptable that the NDIS forced the family to repeat the AAT process over the exact same issues in the following year.
The NDIS should substantially reduce the incidence of appeals by developing a more appropriate set of policies to govern allocation of support funding and a more compassionate approach to planning which recognises and respects the deep understanding that family develops for its members who experience disability.
There appears to be a mindset pervading the Australian government that every citizen recipient of government funds has an objective of defrauding the government. My understanding is that credible research shows that more than 95% of people do the right thing, meaning that the blanket approach to fraud prevention (assuming 100% fraud attempts) is unwise, wasteful and destructive of public confidence and trust. Remarkably, while we see evidence of the NDIS and other government agencies punishing individuals in anticipation of misbehaviour, we equally see evidence of organisations in the disability space behaving in an extraordinary manner through gouging on fees. By adopting trust mindset, the NDIA would reduce the number of AAT appeals considerably AND free up resources to investigate and prosecute the real instances of rent-seeking and outright fraud perpetrated by the few badly behaved individuals and a number of established service providers.
The circumstances in which plans could be automatically rolled-over; It would seem intuitively obvious that a plan could automatically roll over when the plan is demonstrably suitable for the participants circumstances and the circumstances have not changed.
A plan could be considered suitable if the funding provided contains a surplus of up to 5% of the plan total at the end of the plan and if no matters have been raised that indicate any issues with its suitability. It would seem sensible that a brief status assessment should be completed at key stages in the life of a plan, to validate that the plan continues to provide all appropriate services and resources. The result of such assessments would be a key factor in determining automatic rollover.
Automatic roll over should not continue in perpetuity, as evolution in the NDIS system may also lead to different planning outcomes even if the individual situation is unchanged.
Automatic rollover should not happen if the participant signals any material change in circumstances or simply a desire for a complete review to be conducted.
The circumstances in which longer plans could be introduced; There would seem to be little difference between automatic rollover of a plan from one year to the next and a plan which runs for 2 years, other than the possibility that funds from the second year might be pulled forward to the first year. The longer a plan is, the greater is the risk of changes in circumstance, activity or sources of support resulting in a changed level of funds expenditure and a plan crisis developing in later years. It would seem more prudent to avoid long plans and instead provide for automatic rollover, which will limit the potential for funds to be exhausted significantly ahead of plan expiry.
The adequacy of the planning process for rural and regional participants; Our experience is with planning process is for Metropolitan participants due to my son living in a Metropolitan area. Having read many social media posts regarding planning failures and having head personal conversations with participants in their families from regional areas I can only say that similar bad experiences are manifest far too frequently in rural and regional areas. It appears that LACs lack training to an equal or greater extent than metropolitan planners. It is intuitively obvious to anybody who reads the stories on social media that many planners simply make up their own rules on a case by case basis.
Again, my reading of comments on social media and personal conversations regarding planning problems indicates that the same factors cause planning problems in rural and regional areas as in metropolitan areas: a lack of clear objectives; a lack of definitive and appropriate policy; a comprehensive failure of education for all of NDIS personnel, agency personnel, service providers and participants; and cumbersome, opaque processes.
Other related matters: My professional perspective I am author of a major book on governance of the way organisations use IT, and was international lead for adoption by ISO of the original Australian standard on governance of IT. I am no stranger to organisation change including the development and deployment of major business capabilities, including change on the scale of the NDIS.
In 1992 Sir Adrian Cadbury explained to the British Parliament that governance is the system by which a thing is directed and controlled. Cadbury was referring to corporations and corporate governance and his work has substantially influenced the Australian Corporate Law. The same concepts apply in governance of a nation and in governance of the services provided by the government to the citizens of the nation. Those who are charged with the task of governance are expected to ensure that what they govern is effective, efficient, and acceptable.
The citizens of Australia expect our government and our parliament to ensure that the national schemes which support our way of life operate in an effective, efficient, and acceptable manner. There can be no doubt that the current implementation of the National Disability Insurance Scheme is neither effective, nor efficient, nor acceptable. My experience, in respect of my son’s involuntary participation in the NDIS is paralleled by the experience of two other families whom I know quite well, and by hundreds of families about whose experience I have learned through social media.
In my professional experience, failure in major initiatives arises true through factors which can be easily addressed and resolved. The first factor is clarity of objective, and I would suggest that there is no single unambiguous and universally understood objective for the NDIS. Without a single, unambiguous statement of objective, it is impossible to judge whether or not the scheme is successful. The second factor is clarity and appropriate assignment of responsibility, which needs to exist for all participants in the scheme, and particularly for those who direct and control its
ongoing activities. I would suggest that the responsibilities of many powerful actors in the scheme are not clear and not appropriate. The third factor is education for all people who are involved in the scheme as participants, suppliers and managers. It is abundantly obvious to any mindful observer that there has been a massive and comprehensive failure in education which should have been, and which should always be, a primary responsibility of those who operate the scheme. The fourth factor is policy that governs the decision making about and within the organisation’s operations. Clear and appropriate policy with transparency and accountability enable correct decisions to be made and verified on an ongoing basis. Where is the accessible, comprehensive and appropriate policy base for the decisions that are made on a daily basis by the NDIS, its planners and its service providers?
In Conclusion
Some call the NDIS a disaster. I think it is far ahead of the prior arrangements, which had my son on an unchangeable track to oblivion in an aged care bed. NDIS has enabled my son to achieve remarkable advances in his physical capacity. It can help him achieve a great deal more, and can enable him to give back by way of achievement, inspiration and, in time, paid work.
The human brain is a remarkable creation, capable of astonishing self-repair. However, brain injury recovery time is generally measured in decades. We have now met people who have long term ABI’s and we know from them that persistence is the key to rebuilding capacity. The brain needs to learn new methods to control the body and its internal thought processes, and this requires a great deal of repetition in exercises developed by experts and supported by trained support specialists.
Just as NDIS has special provisions for supporting people with degenerative diseases (we have a friend with Motor Neurone Disease), NDIS needs special provisions for supporting people with an ABI, who need life-long therapy, but whose capacity can be forever increasing.
I would imagine that having arrived at the tenth page of this submission, the Honourable Members and Senators would be pleased to reach its end. I too am pleased to reach the end of this submission, and express a sincere hope that your efforts will result in the NDIS being greatly improves in the operation of its core business: providing support to our nation’s disabled people.
Please improve the planning process dramatically, and ensure that while it becomes participant focused, transparent and fair, it also develops the nuance to enable it to deliver great plans for a wide range of circumstances, including severe acquired brain injuries.
Thank you for considering my submission.
Mark J Toomey
5 September 2019