Submission to the Joint Standing Committee on the
National Disability Insurance Scheme Inquiry into NDIS
Planning
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The Alliance appreciates the opportunity to provide this response to the Committee’s inquiry into the NDIS planning process. We have significant experience working with people with disability who have complex health needs who require concurrent supports from different service programs, which is where we focus this submission.
Although this written submission is brief, we would like to present further evidence to the inquiry at a public hearing about the experience of this group of participants with the current NDIS planning regime; and to provide more detail on the need to expand the scope of NDIS planning to include services from other systems that participants need.
Our experience over the life of the NDIS is that the exclusive focus on one service system for people who need an integrated mix of supports in different areas is counterproductive and a barrier to people getting comprehensive support.
The Alliance undertook a project in 2018 that examined the need for integrated planning across health services and the NDIS. This project found that the narrowness of NDIS planning meant that significant advocacy was required, and resulted in negative experiences and outcomes for participants, that included extended hospital stays and admission to residential aged care. The reports from this project are provided as attachments to this submission and contain material and detailed case studies relevant to the question of how to implement multi system planning into the NDIS.
As much as the NDIS has enabled improvements to funding and disability service delivery for many people, for those participants with complex needs that require services from multiple programs, the scheme’s planning and funding methodology has created significant problems for participants and providers alike.
The Alliance routinely works with people with complex health and disability needs who are either engaging with the NDIS planning process for the first time; or who are engaging with NDIS planning processes through subsequent plan reviews. As a result, we work directly with NDIS planners (including specialist teams such as the Aged Care Planning team); senior NDIS executives when planning decisions are not forthcoming and escalation of decisions is required; coordinators of support; and health, aged care, housing and disability services providers.
The Alliance has feedback on each of the inquiry’s terms of reference, but the following are the key areas we believe need urgent change.
The ongoing training and professional development of planners The Alliance believes that as employees of the NDIS, planners have an inherent conflict of interest in representing the interests of the scheme and the interests of the scheme’s participants. Because of this, the Alliance believes that planners and the planning process should sit with community organisations whose knowledge of
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local circumstances and opportunities make them ideally suited to undertake this role.
It goes without saying that substantial effort must be made to improve the training of planners, particularly in the operations, capacities and incapacities of other service systems that they may need to interact with as part of the planning process. Planners also need to be trained to work collaboratively with other service systems and with the NDIS participant and their family. This would be the case whether the planners were NDIS employees or not.
The ability of planners to understand and address complex needs The Alliance has found NDIS planners and Local Area Coordinators (LAC) who have undertaken plans for people with complex needs to be very poorly prepared for this role. Despite asking many times for some indication of what training planners are given and offering to assist with the training of planners working with young people living in nursing homes, we still have no visibility of the type of training planners are given.
As a result, we spend significant time, energy and resources in capacity building with planners who come to planning meetings very poorly prepared. In many cases, the Alliance has developed resources to assist individuals and their families to prepare for a planning meeting and provided this to the planner well before the meeting, only to find the planner attend without having read the documentation.
In general, planners have little or no understanding of other service systems and their operations; and come with a set script that makes no room for engagement or collaboration with other key stakeholders. They also seem to come with an assumption that they must contain scheme costs as a priority.
We have seen many examples where planners have not taken a lifetime support view of a participant or considered investing in a participant’s support to deliver long term personal gains and savings to scheme liabilities. Instead, these planners have concentrated on reducing short term costs that directly disadvantage the participant. This has included refusal to fund supports under S34 (f) that are not available in other service systems. While recent announcements concerning the NDIS funding of particular health supports may change this for those supports, we do not see planners exercising s34 (f) as it was intended overall.
The requirement for the participant to have clearly formed social and economic goals before supports can be funded is unreasonable in many circumstances. It is almost impossible to respond to the plan’s imperative for these goals when the individual’s core needs are still to be met. If the NDIS is to review its planning process properly, it must give far greater attention to asking participants about their needs in the first instance, rather than their goals. Once needs have been attended to and met, individuals can then turn their attention to considering what their goals
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might be. At the moment, these considerations are in reverse order and should be changed as a matter of urgency.
A change to the planning regime that enables comprehensive planning with other service systems would necessarily require differently skilled planning facilitators, as well as clear cross-‐program governance rules to dictate how planning decisions are made, how funding is allocated and service delivery reviewed.
The overall number of planners relative to the demand for plans In order to respond to the need for planning meetings and have capacity to deliver plan responses in a timely manner, the Alliance believes that once a planner is allocated to a scheme participant, that planner should remain in that role with that participant. The NDIS should also enable cohort specific planning with specialists undertaking planning facilitation for different groups. We have seen that planners undertaking planning for people with ABI going through the rehabilitation phase have no real regard or understanding of the rehabilitation system, making it virtually impossible to achieve real continuity for people as they return to the community from rehabilitation hospitals.
Participant involvement in planning processes and the efficacy of introducing draft plans The participant and their family must be well supported to engage in the planning process. To achieve this, the NDIS must fund advocacy services to not only help the individual and family prepare for the planning meeting, but provide support to them when they do engage with the planner. There is often a huge amount of information that must be gathered from a range of service providers prior to the planning meeting. This information needs to be collated and understood and made available to the planner before the meeting occurs.
Making this information available to the planner well before the planning meeting is no guarantee that the planner will have read and understood the information provided to inform the plan’s subsequent development. In too many cases, the resulting plan bears little resemblance to the information provided to the planner prior to and during the planning meeting and an immediate plan review is required.
Best practice service planning is a process, not just an event. The Alliance remains surprised that the NDIS didn’t have draft plans as part of their planning regime from the outset.
Plans should also be able to be amended if required rather than replaced as the legislation demands. This is a flaw in scheme design that we hope will be addressed through the Tune Review of the NDIS Act and the Participant Service Guarantee.
The incidence, severity and impact of plan gaps Given the inflexibility of plans and the difficulty in changing them, plan gaps can be devastating.
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A significant problem with the NDIS’ single sector planning approach arises where a service gap is identified in planning (such as a health service, a need for advocacy or transport) but it is not documented, meaning that these gaps remain. Only services that are funded are represented in an NDIS plan. Needs that are not deemed reasonable and necessary for the NDIS to fund are not followed up or referred to another system, and mostly remain unmet. In some cases the lack of support in a certain area impacts on the effectiveness of the NDIS services (as is the case with numerous health services, including rehabilitation).
Even where a participant gets support coordination funding in their plan, this role can only pursue what has been recorded and approved, so any omission (structural or otherwise) cannot be seriously addressed without external advocacy, which is either not available to many people, or is not sought.
Planners are structurally unable to work with service systems outside the NDIS, other than to use them to supply evidence for disability related funding decisions. They cannot take a collaborative approach to the planning process when working with stakeholders. There is nothing in the legislation that prevents them from taking a more collaborative approach, but the administrative definition of their role has severely limited their effectiveness. The Complex Participant Pathway has made some procedural improvements to planning and plan implementation, but the fundamental problem with the siloed planning model used by the NDIS remains.
The reassessment process, including the incidence and impact of funding changes The Alliance’s experience of the reassessment process for people with complex needs is that plans commonly embody significantly reduced funding as a result of the reassessment process. This seems to be because there is a presumption that scheme participants will be striving to achieve the social and economic goals outlined in their plans and that a correlation exists between achievement of those goals, improved independence and the need, therefore, for less funding from the NDIS.
For individuals with degenerative diseases like leukodystrophy, Multiple Sclerosis or Huntington’s disease; or individuals with acquired brain or spinal cord injuries whose condition will not improve, it is impossible to understand the thinking behind plan reviews that come back with significantly less funding than the individual had previously. Plan reviews and escalation to the Administrative Appeals Tribunal as a last resort, have unfortunately become a necessity for these individuals.
We believe that the planning and funding mechanisms of the scheme need serious reform, particularly to enable a cross program multidisciplinary team approach for people with complex needs.
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Appendices
Integrated planning for people with complex needs transitioning to the NDIS, Sector Development Fund Project Interim Report, February 2018.
Integrated planning for people with complex needs transitioning to the NDIS, Sector Development Fund Project Final Report, May 2018.