Joint Standing Committee on the National Disability Insurance Scheme - NDIS Planning

Friday, September 13, 2019

National Office PO Box 397 Matraville NSW 2036

Spinal Cord Injuries Australia (SCIA) is a for-purpose organisation working for people living with spinal cord injury (SCI) and other similar disabilities. We were founded by people with SCI over 50 years ago. People with disabilities make up over 25% of our staff, and the majority of our board have a disability. SCIA is a national, member based organisation. We have physical locations in Sydney and regional New South Wales, Australian Capital Territory, Victoria, Queensland, South Australia and Western Australia, and we support people nationwide. SCIA serves 2,500 members made up of people living with disability, their family, carers, researchers, and other professionals working in the sector.

Broadly, SCIA has concerns about the general quality of participant plans where they are not fit for purpose for a participant’s needs; there is far too much inconsistency still in the development and building of plans due to errors and assumptions, leading to unnecessary unscheduled reviews; unscheduled reviews are still taking far too long to be processed; SCIA would support recommendations to remove the current staffing cap in the administration of the NDIA which we believe would result in better outcomes for participants associated with planning and reviews.

(a) the experience, expertise and qualifications of planners (b) the ability of planners to understand and address complex needs (c) the ongoing training and professional development of planners (d) the overall number of planners relative to the demand for plans

There are many planners doing a great job in understanding and supporting participants through their planning processes. However there is still a great deal of inconsistency that participants experience from one plan to another and in how one participant is supported against another with a similar disability and needs. SCIA supports greater numbers of planners and building the knowledge and training of planners in understanding the needs of people with disability.

The current structure of the planning process is such that the vast majority of plans that are developed are done without the planner ever meeting the participant they have approved the plan for. They rely on Local Area Coordinators (LACs) to meet with participants and do a lot of the groundwork leading up to the building of a new plan. For this to work properly, the LAC has to adequately record and understand the needs of the participant – during the planning meeting and in gathering documents from the participant to support their needs. This information is then used to build the plan (either by the LAC or planner), with the planner having ultimate power in signing off on the new funding allocations written in the new plan. Both processes have to be in alignment for this to work in favour of the participant i.e. the LAC has to get the information right and the planner, who has the power to approve must be in agreement.

There is some complexity in this process. There are many LACs doing a great job but LACs don’t always have the experience or experBse in understanding the needs of a parBticpant or their data recording is not adequate; planners themselves don’t fully appreciate the informaBon they have been given by the LAC or they disagree with aspects of the funding to be allocated. This ulBmately leads to plans that are not meeBng the needs of parBtcipants, much to their frustraBon.

Planners and LACs should be given adequate knowledge and training in understanding complex needs such as spinal cord injury and similar disabiliBes. SCIA believes this is also an abtudinal issue – planners someBmes think they know best. ParBtpicpants need to be listened to – they ulBmately know best about the types of supports they need.

The NDIA would benefit from a greater number of planners available to undertake scheduled reviews and unscheduled reviews (S48 and S100) through the internal review process. The current staffing caps as legislated across the NDIA should be removed; there is sBll a significant backlog in processing unscheduled reviews leading to prolonged outcomes for parBtcpiants in desperate need of changes to how they are funded – leading to significant poorer outcomes for parBtcpiants parBcularly across day-to-day supports for personal care (core funding for assistance with daily living) and AssisBve Technology.

There needs to be greater engagement between planners and parBtpicpans even when LACs are involved. Planners need to get out and meet parBtcipants, parBiculary in their homes, where a great deal of their funding is used on a day-to-day basis – the more planners engage with the parBcipants they are assisBng, the greater the levels of understanding there will be and sense of familiarity. This is how knowledge is gained and shared through a mutual understanding and respect between a planner and the parBcpant. There is far too much of a power imbalance in this relaBonship as it is currently structured.

(e) par1cipcant involvement in planning processes and the efficacy of introducing draY plans

SCIA believes it is imperaBve to reintroduce drae plans as an important step in the finalisaBon of a new plan. Drae plans provide an avenue for parBcpcant and planner to work through any concerns or problem areas in funding. There are far too many parBtcpiants on the receiving end of poorly thought out plans as a result of mistakes made by the planner or the LAC. When this happens, the only recourse a parBtpicpant has is to go through the review processes – internal review and external review – to get changes made. The review pathways take far too long to recBfy poorly developed plans and cause a huge amount of stress for the parBtcipant.

Introducing a drae plan process allows for feedback by the parBticipanr and therefore potenBally removing any funding gap errors. Without doubt this will ulBmately benefit everyone involved; it provides greater certainty for the parBticpant and will cut down the workload of the NDIA by reducing the number of internal reviews (S100) that currently are lodged because of new plans not greeing parBcipant need. This cannot be underesBmated. It is a significant burden for the parBtipciant having to get a plan recBfied through the review process – it is an unnecessary stress. It is Bme-consuming for parBcpicipant and the NDIA and of great financial cost to government agencies parBcularly if it leads to an external review to the AdministraBve Appeals Tribunal (AAT) involving case conferences, lawyers, conciliaBon and formal hearings over many months.

The NDIA should posiBvely look at drae plans as a remedying strategy. Aeer all, the NDIS is meant to be about choice and control for the parBtpicpant but if you ulBmately have no say in the finalisaBon of your funding allocaBon, you are completely disempowered.

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The current status quo is not working for some participants. They have had far too many inconsistencies over planning cycles. A plan issued one year, providing a good level of support, might lead to significant funding cuts for the following year’s plan without any change in circumstance from the participant and with no explanation or justification made by the NDIA, with decisions that are unclear leading to participants feeling angered, frustrated and disempowered.

SCIA has seen this happen countless times. As an example, a quadriplegic had their core funding allocation – which provides support for daily personal care amongst other things – slashed by half following the issuing of a new plan. The participant’s circumstances had not changed in any way, yet the dramatic funding reduction left the participant unable to be supported in the home on a daily basis. It was only after many months supporting the participant through the review pathways that changes were made to rectify the problem. But in doing so, the burden is on the individual – they have to prove, through providing evidence at the AAT, that they need a basic level of support. This is despite the participant having a long-standing disability and once again having to tell their story and state their case over and over again.

There is currently a lack of transparency in how the NDIA makes its decisions in approving plans and almost no way to get an adequate explanation. Participants need to feel that they have a voice in this process and draft plans would offer this by allowing further communication with the planner prior to the plan and funding allocation being finalised.

(f) the reassessment process, including the incidence and impact of funding changes

Without doubt, one of the most frustrating aspects of a new plan being issued is where there is a lack of consistency from the old plan, to the new plan particularly when there are drastic changes in funding amounts without any explanation of the reasoning by the NDIA for this change.

This can have a significant impact on a participant especially for those with higher levels of disability who are reliant on a basic level of support on a day-to-day basis for personal care needs (assistance with daily living) in order to simply get out of bed, and are therefore highly vulnerable to fluctuations in funding. For this reason, core funding requirements are likely to be fairly consistent – unless there has been a significant change in circumstance – from one year to the next. It is therefore imperative that scheduled plan reviews are conducted in a way to ensure there is a proper understanding between the planner/LAC and the participant. There is nothing more frustrating and disempowering when a participant receives a new plan that does not meet their expectations based on the planning conversations and documents collected and submitted in support of the development of the new plan.

Getting mistakes rectified after a plan has been issued is very time consuming and slow; it is also not entirely consistent. For instance, one may be lucky enough to have a responsive planner who is willing to reissue a plan. In most cases, the onus is placed on the participant to ask for an internal review (S100) by filling in the Review of a Reviewable Decision form.

The scheduled plan review meeting, in which the participant must gather all necessary files and evidence related to ongoing services, update goals and their participant statement and forward to whoever is conducting the review is a significant burden to the participant; it may be very necessary for someone undergoing changes in circumstances, however for many people whose circumstances are relatively consistent, it is not really necessary. They should not have to feel that they need to re-tell their story over and over covering every aspect of their life, describing their disability, its impact and why they need a certain level of support/funding.

(g) the review process and means to streamline it

As already stated, the review process is complex and far too protracted with some participants waiting many months for an outcome as the Commonwealth Ombudsman’s Report of Administration of Reviews under the NDIS of 2018 found. Some minor tweaks were implemented as a result, including the ability to ask for a “priority” review however the current time frames are still too long particularly if a participant has been given a new plan that is not fit for purpose, resulting in the person being given inappropriate funding levels for their needs. This puts them in a very vulnerable circumstance and potentially waiting many months to pursue an outcome.

As set out in the legislation (NDIS Act) there are two types of reviews; a participant can ask for a review of their plan at any time. This is generally referred to as an S 48 review and the CEO or delegate has two weeks in which to decide to conduct a review. If the answer is no, that is a reviewable decision and therefore the participant can ask for this decision to be reviewed (S100).

Once a new plan has been implemented, if they are not happy with that plan, a participant has 100 days to seek a review (also S100). However this can be confusing for participants as to which review to ask for. Even the NDIA gets get this wrong sometimes leading to jurisdictional issues at the AAT. Therefore this whole review pathway needs to be looked at again. We need a shorter timeframe, with limits placed on the time it takes the NDIA for conducting a review – and having it written in the legislation or – and we need a simpler process for how and when a review can be conducted. There must be an easier way to seek changes in a participant plan when manifest errors or omissions are apparent.

Some time ago, the NDIA introduced “reference packages” as a guide to give some indication to planners what is likely to be in scope when building a new plan, for a range of different disabilities. It is not entirely clear if this is still a tool used within the scheme; certainly the efficacy of this approach is questionable as there is still a large disparity in the quality of plans that are being produced. Surely another reason to consider the introduction of draft plans which will allow feedback to be considered prior to the finalisation of the funding.

(h) the incidence of appeals to the AAT and possible measures to reduce the number

SCIA strongly supports the introduction of draft plans as a measure to improve the planning process. Without doubt, it will reduce the incidence of appeals to the AAT and as a result will improve the workload within the NDIA and AAT. The majority of participants that come to SCIA for advocacy support through the NDIS Appeals process, do so because of poorly developed plans with insufficient funding across “core” supports, allied health services, Assistive Technology and transport funding.

The most recent COAG Disability Reform Council Quarterly Report (30 June 2019) shows that 59% of all AAT cases are a direct result of problems with plans and plan reviews. This number would certainly decrease if draft plans were re-introduced into the planning cycle. It should also be said that, it is no small measure going to the AAT to seek redress because of problems participants have experienced when plans are developed or reviews are asked for. It takes its toll on all concerned, for participants, family members, advocates and those working on behalf of the respondents.

Participants find it incredibly stressful undertaking the formalities of the AAT. From the initial Case Conference, the power imbalance is apparent; the participant – who may have an advocate to support them, though certainly not always – must negotiate with the NDIA who is always represented by a lawyer, either in-house or through a private law firm. The NDIS legislation (NDIS Act

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and ParBcipant Rules) is regularly cited, discussed and analysed when working through aspects of funding and how to resolve differences in expectaBons and what potenBally is and is not likely to be considered in reaching an agreement. Further evidence has to be produced, expert reports wriYen and considered, summonses for medical records are issued. Formal Statements of Facts are wriYen and submiYed from the NDIA representaBves, someBmes many pages in length and wriYen in legalese.

It is possible for the parBcipant to get legal representaBon through Legal Aid but in order to do so they must meet the eligibility criteria. So this is another significant step in the work and Bme that is needed in pursuing outcomes through the AAT. If agreement can’t be reached by both sides (the applicant and respondent) then the maYer has to go to a formal Hearing which is set out similar to court proceedings. The NDIA is always represented by a barrister. So it can be a very inBmidaBng environment for a parBcipant to undertake and consisBng of many months and no doubt a great cost financially for the agencies involved. Any measures the can be taken to reduce the incidence of AAT applicaBons would surely be a posiBve step.

(i) the circumstances in which plans could be automa1cally rolled-over

SCIA would support the opBon for parBcipants to automaBcally roll over plans. This would be of great benefit to some parBcopants whose support needs would remain consistent from year to year. It would remove the stress that some people experience, having to explain on a yearly basis every aspect of their life and produce documents to support their circumstances. It would make sense where it has already been established that a parBcpipant has a disability requiring a certain level of support, that where suitable their funding allocaBon could be conBnued or rolled over for the following year. It would be a benefit for the parBcpipant and the NDIA.

Under the old NSW Government state funded scheme, administered through the Department of Ageing, Disability and Home Care, the AYendant Care and Community Support Program schemes used to rollover funding on a yearly basis. This would certainly be achievable for those parBcpipants comfortable with this approach who felt that their needs are enBrely consistent with the previous year’s funding allocaBon and parBcpipant goal sebngs. Indeed, it is likely there are many individuals in the scheme who would want to maintain or rollover their current plan sebngs. What would be important in this approach would be to allow the parBcpipant to indicate, prior to the end date of the current plan, to the NDIA whether they wanted to roll over the plan or seek changes through a scheduled plan review – as is the current approach.

(j) the circumstances in which longer plans could be introduced

We are already beginning to see longer plans being introduced for some parBcopants, and again similar to the previous point above, SCIA would support this measure that would assist in maintaining regular funding over a longer Bmespan which would no doubt be of comfort for some people who have previously dealt with inconsistency through regular planning cycles and fluctuaBons in the funding.

There would be a small cohort, where this approach would not be suitable, whose needs will change and funcBonal impairment is likely to deteriorate over shorter Bme periods. Otherwise this would be a posiBve move by the NDIA and would reduce the workload on all concerned.

Tony Jones Policy and Advocacy Manager