Submission into NDIS Planning
Joint Standing Committee on the National Disability Insurance Scheme
Dear committee members,
Thank you for the opportunity to provide feedback on the process of planning as it currently stands in the NDIS. I write my submission with four perspectives:
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As CEO of Plumtree Children’s Services, supporting over 600 children with delays or disabilities and their families each year. As a registered provider, we have received many reports from staff and families about their experience of the planning process for children birth to eight years old.
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As a temporary partner of the NDIA. During 2017-18 Plumtree was a Transition Planner in New South Wales which gave us the experience of planning with over 400 families of children birth to 7 years old, using NDIA guidelines. Whilst this was only a temporary role, it gave us an insight into the planning process required by the NDIS, in comparison to early intervention research and internationally established family- centered practices.
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Personal experience. My son is 29 years old and he is a participant of the scheme. I have two years of experience with the NDIS planning process and a lifetime of experience with planning, both good and bad, with various government bodies, organizations, and independently as a family. We have been self-managing his plan since 2009 prior to entry into the scheme and are currently self- managing his NDIS plan.
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Research experience. For the past nine years I have been undertaking my PhD entitled ‘how family- centered is individualized funding for families of young children with disabilities?’. This study has included reviewing existing family centred planning processes and concluding that existing mechanisms can be improved so that they involve family participation to a greater degree, instead of being focused on the administrative or other needs of the service providers or funding bodies. This research led us to co-designing with families a radically new approach to planning. This tool has been used by over 1000 families in
Australia, New Zealand, Canada and Finland. For more details
https://plumtree.org.au/what-we-do/programs-and-services-for-children-and family/pictability/
At Plumtree, we believe that every child Phone: 02 9572 8840 Email: info@plumtree.org.au
Recommendations
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Simplify The current system is over engineered and should be simplified to support planning which focuses on setting a positive vision that is generated by the individual, in whatever format they prefer, so that it is recognizable and meaningful to them.
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Outcomes focused The planning process should have a hopeful, aspirational and outcomes focus which supports the participant to think about, and work towards, achieving the goals of a life of citizenship, purpose, independence, inclusion in the community and ultimately acceptance. These outcomes are a focus of the scheme and intrinsically related to its sustainability, yet most participants are completely unaware that the NDIS is outcomes focused.
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Person- centred and family-centred The current NDIA planning process is far from person-centered or family-centered. It has taken the planning process back at least two decades. It has confused people’s understanding of what planning is and how it is done. It has hijacked the term ‘planning’. The prevailing view by participants is that once they have completed ‘the plan’ with a partner, that planning is over. Participants are subsequently reluctant to talk more about: their funded goals; how these could be broken down into short term achievable first steps; re-prioritizing goals; and importantly, learning how to take on greater ownership of achieving goals themselves, through capacity building approaches.
Planning is a dynamic, ongoing process which should be thought of as a process separate to the funding conversation. I realize that this view is complicated by the fact that the word ‘plan’ is part of the NDIA Act. However, attention must be paid to the current confusion between the funding conversation and real vision setting and true planning, as this relates to an individual‘s life. In my opinion, these two issues, the funding conversation and planning do not mix. Like water and oil, no matter how hard we try the two are completely different things.
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Choice Participants should have the flexibility to choose who they plan with and should have a funding allowance with which to undertake this planning. This could include: planning with peers from disabled person, family led organizations; planning around the kitchen table with family and/ or those who matter most to the participant; planning with local trusted organizations and/or individuals; planning with an NDIA partner. Having choice on who to plan with will allow individuals to make decisions that meet their unique circumstances. They may choose to plan regularly with the same individual or organization in order to support continuity. They will also have the ability to change who they plan with, if they are not satisfied.
At Plumtree, we believe that every child Phone: 02 9572 8840 Email: info@plumtree.org.au
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Reference package Participants should know upfront what their budget will be. This will provide certainty and reassurance about the budget right from the start. It will enable participants to focus on vision setting in their planning meeting instead of being distracted by a funding conversation.
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Include the voice of the participant Whichever way people choose to undertake their planning, there must be an expectation that the voice of the participant is included. There should be an expectation that this must be demonstrated. Every individual, no matter what level of support needs they have, has a voice and this voice should be heard and have a place in the planning process. This may look different for babies and young children and it may look different for people with high and complex support needs. However, it is possible and should be an expectation.
Conclusion
Planning is a process, one which is continually being revisited and re-defined depending on changing circumstances and priorities. It should be person-centered or family centered, building on the best evidence we have, rather than taking us back to bureaucratic and organization- focused approaches.
The NDIA should promote innovation in planning so that many more approaches and tools can be developed and researched so that the voice of individuals and those who support them are central.
I have chosen not to recount examples of the way the current system is damaging the concept of planning and indeed, of how traumatizing existing processes are for many individuals and their families. I am certain that there will be many submissions that will focus on these. Indeed, I have personally had a terrible experience in our sons most recent planning meeting. Instead, I have presented a reframing of planning in the hope that this committee will review the fundamental process rather than tinker around the edges of the current approach.
It is possible for planning to be a positive, uplifting and life-changing process but not under the existing processes. I urge the committee to review and change the current processes so that planning takes its rightful place as a critical ingredient in supporting participants to achieve scheme outcomes and which demonstrate the NDIS truly is a world leading approach to disability.
Regards,
Sylvana Mahmic
CEO
At Plumtree, we believe that every child Phone: 02 9572 8840 Email: info@plumtree.org.au