Concerns regarding NDIS planning processes and support for participants with complex needs

General issues around the implementation and performance of the NDIS

The Office of the Public Guardian (Tasmania) welcomes the opportunity to provide submissions to the Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) in relation to its inquiries on NDIS Planning, and we welcome any chance to work collaboratively to improve the operation of the NDIS. The Office of the Public Guardian (OPG) is appreciative of the benefits and opportunities provided to the persons for whom we act as guardian who are also NDIS participants. The OPG is pleased to provide the following brief submission. Further contact with the Public Guardian is welcome if it would assist in clarifying any of the issues raised or providing more detail.

Position of the Public Guardian

The Office of the Public Guardian (OPG) has seen an increase in the number of cases where The Public Guardian has been appointed specifically to make decisions about service provision under the NDIS, and an increase in the number of orders for existing clients that have needed to be reviewed in order to extend our powers to include NDIS-related decisions. The number of NDIS participants under the guardianship of the Public Guardian as at 30 June 2018 was 71, or 27% of our total caseload.

The workload increases for clients who are NDIS participants. Our analysis mirrors the work conducted in other states: we estimate there is, on average, an additional 25 hours of work per year for each client who is an NDIS participant. This work involves extensive liaison with multiple parties; attending planning meetings; exploring the goals and wishes of the participant; perusing and reviewing plans; selecting service providers; consenting to service agreements; and implementing and seeking reviews of plans.

Along with our interstate counterparts, the OPG is keeping a close watch on the potential risks of a market-based approach to funding, including issues around service provider readiness, potential gaps in service provision and any issues around the loss of service providers of last resort, as was provided for in state funded disability services. We have particular concerns surrounding arrangements for crisis services.

The NDIS is very much a new and dramatically different scheme, both as a funding model and in the principles underpinning it. Processes, protocols, policies and guidelines are still evolving. The roles of key players are still being clarified. The intersection and interaction between all parties remain in the process of negotiation. The OPG is working hard to ensure our role – as a formal substitute decision-maker – is well understood. We also advocate for practices that support the choice and control of participants, with substitute decision-making being a last resort.

a) the experience, expertise and qualifications of planners; It is evident that planners bring a broad range of skills, knowledge, experience and expertise to their role within the NDIS. Some have an apparent lack of a relevant background. Plans have been written and decisions made which have reflected a lack of understanding about the impact having a disability can have on a person’s life. Some planners have demonstrated a concerning lack of awareness surrounding disability. This will be expanded upon in (b).

b) the ability of planners to understand and address complex needs; The OPG is concerned by the lack of understanding and appreciation of risk faced by persons with disabilities when planners or senior delegates are making decisions or recommendations about supports. The more complex a participant’s disability, or should a participant have a dual diagnosis, the less understanding NDIS planners seem to have surrounding the complexity of their needs.

We provide the following examples:

Some planners have actively sought to cut participant’s funding in review meetings despite reports from allied health professionals specifying a requirement for funding certain needs, such as transport assistance.

A planner recently allocated an arbitrary number of daily support hours (4 each weekday) for a participant that had experienced a period of prolonged homelessness (nearly 12 months) that was entering in to a tenancy. There appeared to be no basis for allocating the

4 hours and it was not possible to argue whether this was sufficient despite the participant experiencing multiple complex issues including drug and alcohol misuse, family violence, mental health illness, and unknown capacity to manage ADLs independently (due to a lack of allied health reports).

A planner was observed to contest the suggestion of providing a meal service to a participant with a psychosocial disability on the basis that those services are for ‘people who are in a wheelchair (etc.) who can’t physically cook.’

In a plan review meeting for a participant with Huntington’s disease, the planner appeared to have no relevant knowledge of the impacts of this disability on the participant. The planner had no knowledge of the local public health facility that the participant was residing in. The planner was also observed to say to the Coordinator of Supports ‘put the words in my mouth’ when justifying an increase in supports/funding, which showed their lack of understanding of the impacts of Huntington’s disease on the participant.

While the OPG fully supports people living with a disability to be supported in employment opportunities that best reflect their skill set, there is sometimes a mismatch between the skills and/or abilities of the planners and those of the participant. One planner was observed to have some communication difficulties as a result of a (disclosed) disability. This made it difficult when the participant (who also had some communication difficulties paired with cognitive impairment) was contacted via phone to participate in the meeting. The participant could not understand the planner, and questions often had to be repeated by the supporting staff for the participant.

c) the ongoing training and professional development of planners; Many planners do not appear to have had training in communicating and dealing with participants with cognitive impairments. This is of considerable concern given the particular barriers for people with cognitive impairments to exercise choice and control, as intended by the scheme.

Offers by the OPG to provide education and training to local NDIS planners on guardianship have not been taken up.

The OPG recommends NDIS planners undergo education and training on guardianship in order to increase their awareness and knowledge of those participants with cognitive impairments who are both under guardianship and NDIS participants.

d) the overall number of planners relative to the demand for plans; Delays in scheduling both initial and review plan meetings suggest there are insufficient planners. Bottlenecks and delays in plan approvals after plan meetings suggest there are also insufficient managers/specialist staff delegated with approval authority. Regional variations are apparent.

There appears to be a high turnover of planners, particularly in the south of Tasmania. As a consequence, participants rarely get the same planner twice unless they are in the Complex Planning Pathway. This results in inefficiencies associated with each new planner needing to familiarise themselves with the participant and/or a lack of continuity of the planning process and lack of understanding and tracking of participant’s progress. There have been many occasions where the planner has been provided with multiple assessments and progress reports but have not read this material prior to the plan review meeting. It makes it difficult to participate in meaningful discussion with the planner about the participant’s needs, particularly when they are complex or there are sensitive issues that require careful communication. In our view, this also misses an opportunity to seek clarification about any information contained in the reports and therefore increases the likelihood of overlooking reasonable and necessary supports.

e) participant involvement in planning processes and the efficacy of introducing draft plans; Involvement of participants in planning meetings is often superficial and patronising. Effective participation needs to be managed well to maximise the participant’s input into the planning process – setting goals, articulating wishes and desires, and identifying needs. It can be very difficult for a person to speak up in front of providers and supporters who they rely upon because there is always an inherent power imbalance. People with disabilities (like everyone) can easily feel anxious in the face of imposing bureaucratic processes. Communication difficulties faced by many people with

disabilities exacerbate this situation. Proficient and compassionate planners, mindful of and skilled in overcoming these barriers are needed in order to manage the planning process if the engagement of the participant is genuinely sought.

Draft plans are not supported if they would bring about further delays. However, they could potentially be a good means of checking for feedback before finalising a plan, and of providing parties the opportunity to ask questions of the planner. Draft plans have the potential to negate further reviews. Draft plans may be particularly useful where the participant cannot be at the planning meeting: they may provide an opportunity for the participant to still have some input, or to otherwise accommodate any communication needs associated with the participant’s disability.

OPG recommends draft plans:

In the instance where the participant is not able to attend the planning meeting and has the capacity and/or desire to have some input
Where the draft plan would accommodate any communication needs associated with the participant’s disability.

f) the incidence, severity and impact of plan gaps; The OPG has observed that there are plan gaps between nearly all participants’ plans for whom we are appointed as guardian. Invariably, the review process starts just a few weeks before the end of the plan and the subsequent plan is rarely completed and in place until at least a month after the previous plan has expired. This is particularly the case for expensive plans that need higher level approval. The incidence and impact of gaps is exacerbated by 6 month plans.

NDIS service providers are reluctant to provide service without a plan in place and a guarantee of payment; and there are no processes in place for providers to claim payment for service during periods where there is no plan and therefore no current service agreement in place.

The reliance on providers to continue to provide services without a contract and guarantee of payment, means they will sometimes do so but with “skeleton” hours of support, with participants substantially (or even completely) going without. We would guess that many smaller providers simply do not have sufficient cash-flows to take on the risk of providing

services for which there is no guarantee of payment or a significant delay in receiving payment.

Acting as a person’s guardian, we are unable to provide consent for services without knowledge of what is provided in a participant’s plan. We may also be tasked with consenting to short term agreements until the plan is finalised and approved. This results in considerable time demands not only for guardians but also for service providers and potentially other non-statutory nominees.

g) the reassessment process, including the incidence and impact of funding changes; As noted in (b) there can be inexplicable reductions in funding seemingly due to a lack of appreciation or understanding of risk. There are a concerning number of occasions where well-evidenced support needs and recommendations for support do not appear to be taken into account, and reasons as to why the decision to reduce funding was made are not given.

The requirement of a current occupational therapy (OT) assessment to justify any funding change results in delays. Many OTs have long waiting lists.

h) the review process and means to streamline it; The standard process through the National Access Team is very slow, particularly for unscheduled reviews. Processes would be more streamlined and effective if direct access to a local person was made possible.

There is a lack of opportunity for participants to have plan review meetings in an environment of their choice (e.g. their home or other care setting). For some, attending the office is not possible, and for others the more formal unfamiliar environment can be a barrier. LACs are often more flexible than planners and better able to foster the involvement of the participant – for example, they are more able to go to the participant’s home.

Participants, Support Coordinators and nominees require the ability to communicate with the participant’s planner outside of formal NDIS review meetings and to be guaranteed a

response to an email or phone message within a specified time period. Timeframes regarding plan availability should be specified and communicated to the participant and other relevant parties

It is very important that participants and nominees have the capacity to request and receive an urgent unscheduled review in a timely manner. There are often errors within plans or areas where a participant has been grossly underfunded (despite evidence of need being provided) and there is no other form of recourse other than to request a review. Currently, an urgent request for an unscheduled review can take upwards of 3 months to occur, even when a very poor health outcome (death) for a participant is cited as a potential outcome of inadequate support.

The OPG recommends that clear guidelines and/or criteria are developed to outline when and by whom an urgent review can be sought.

i) the incidence of appeals to the AAT and possible measures to reduce the number; The OPG does not have sufficient experience of NDIS issues that have been appealed to the AAT to comment on this matter.

j) the circumstances in which plans could be automatically rolled-over; In principle, the OPG supports automatic roll-over of plans in appropriate circumstances on the proviso there are decent review processes, including for urgent reviews, and that the participant is offered the option of requesting a review (i.e., they can opt back IN to the usual review cycle).

The OPG does not support automatic roll-over of a first plan, and recommends there be a limit in the number of plans that can be automatically rolled-over.

We recommend criteria should be developed specifying the circumstances in which automatic roll-over can be considered, including:

the participant has stable accommodation and living circumstances
the participant’s disability and support needs are stable
there is limited potential for (further) capacity development 7

k) the circumstances in which longer plans could be introduced; The OPG recommends that criteria should be developed in order to specify the circumstances in which longer plans can be considered, including:

the person is at or nearing end of life or in palliative care
the person’s disability and circumstances are such that no major change to support needs/service is likely.

l) the adequacy of the planning process for rural and regional participants; The OPG does not have any concerns pertaining specifically to rural and regional participants, noting that most of Tasmania falls into that category.

m) any other related matters. Inadequate crisis responses:

The NDIS, as it proclaims, is “not a crisis service”. However, nor are the services it funds as components of a participant’s supports. The OPG sees a need for system that responds to crises outside of the current planning processes.

Services to support discharge from hospital:

There appears to be a lack of coordination and agreement between levels of government regarding planning for participants who are admitted to an acute facility. An acute admission, for many, can be associated with a significant change in disability-related support needs. There is no effective mechanism in place or agreement between State/Territory Governments for funding additional supports to facilitate a safe discharge from hospital in a timely manner. We are aware the NDIS establishes a clear delineation between health-related and disability related support needs. Anecdotally, we see many cases where a person is admitted to hospital for social reasons (for example a deterioration in functional ability at home or breakdown in care arrangements) rather than acute medical reasons, and there are a lack of safe alternatives. Or, where a person has suffered an acute injury and acquires a disability, their rehabilitation is complete and they are unable to be discharged to the community without a significant level of support that is generally, not funded by the health system. The NDIS application process may be commenced in the hospital setting to facilitate access to these services and due to the

current processing times can result in prolonged admissions to either an acute or semi-acute setting thus delaying an otherwise timely discharge and limiting a person’s access to the least restrictive option of community living.

Other:

One guardian experienced a participant having a three month delay in their client’s plan being implemented, because there was no support coordination funding within the plan to organise services for the participant.

Summary of Recommendations:

The OPG recommends NDIS planners undergo education and training on guardianship.
The OPG recommends draft plans in the instance where the participant cannot attend the planning meeting; and where the draft plan would accommodate any communication needs associated with the participant’s disability.
The OPG recommends that clear guidelines and/or criteria are developed to outline when and by whom an urgent review can be sought.
The OPG recommend criteria should be developed specifying the circumstances in which automatic roll-over of plan’s can occur.
The OPG recommends that criteria should be developed in order to specify the circumstances in which longer plans can be considered.

Supported Independent Living

The OPG believes that there are a number of issues that affect NDIS participants across the nation in regard to SIL. Due to time constraints, we are unable to provide comment on this and will rely on our national counterparts.

Supported Independent Living

Liz Love (Senior Guardian)

per Kim Barker (Public Guardian Tasmania)

GPO Box 825, Hobart, TAS 7001