SUMMER
FOUNDATION
A participant-centred planning framework to get the NDIS back on track
Summer Foundation submission on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
17 May 2024
Evidence provided to the Disability Royal Commission and the NDIS Review demonstrates that the NDIS is failing some of Australia’s most vulnerable citizens.
Instead of transforming the disability sector, the levers in the Scheme are frequently driving poor quality and expensive supports that are not delivering positive outcomes for people with disability. Furthermore, some people are being placed at increased risk of violence, abuse, neglect and exploitation.
The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) introduces an initial tranche of legislation to deliver on the recommendations made by the NDIS Review. It also includes amendments that are aimed at improving the operation of the Scheme in the short-term.
This is an important first step to getting the NDIS working properly for the most vulnerable participants who need access to 24/7 support. Without timely legislative reform which more clearly articulates who the Scheme is for, the funding each person receives and how it can be used, the Scheme is at risk of not delivering on its vision.
While the NDIS is yet to achieve the transformation promised for people requiring 24/7 support, a small group of participants and families have managed to use their NDIS funds flexibly to develop individualised living options and achieve positive outcomes. These participants are making good use of their NDIS funding and experiencing the transformational change that the Scheme was designed to achieve.
1 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023) Executive Summary, Our vision for an inclusive Australia and Recommendations. 2 Commonwealth of Australia, Department of the Prime Minister and Cabinet Working together to deliver the NDIS. NDIS Review: final report.
Some people with disability are anxious that these legislative amendments will result in a reduction in their NDIS funding and force them into shared living arrangements. It is critical that this Bill, supporting NDIS Rules and legislative instruments, and the implementation of the reforms foster rather than disrupt inclusive and tailored housing and support solutions.
The Summer Foundation believes this Bill presents a valuable opportunity to realise an improved NDIS that is less adversarial and more fit-for-purpose.
The Summer Foundation welcomes the shift to a needs based assessment approach that provides participants with a reasonable and necessary budget, which they can use flexibly to best meet their disability support needs. This will hopefully lead to a more consistent and equitable approach to budget allocation and planning, and a better participant experience. It will also assist the National Disability Insurance Agency (NDIA) to deliver the Scheme within a more predictable cost envelope.
The Summer Foundation is also supportive of a flexible budget which will provide participants with far greater choice and control in how they can use their NDIS funding.
Getting the access and planning process right is critical to an improved participant experience, and to the sustainability of the Scheme. Central to this is adopting a participant-first culture and recognising participants as experts in their own lives. Removing unnecessary bureaucracy and being more respectful of the needs, preferences and choices of people with disability will better serve participants and ensure a sustainable Scheme and broader ecosystem of disability supports.
This submission focuses on the amendments in the Bill that are most relevant to participants who need access to 24/7 support (the cohort served by the Summer Foundation).
A fair, consistent and flexible NDIS budget
The Summer Foundation is supportive of the concept of a flexible NDIS budget that provides participants with more choice and control to identify and secure the NDIS supports that best meet their disability requirements. This will enable a more positive planning experience.
Under the current legislative construct, NDIA delegates assess individual support needs against largely subjective criteria. This has often resulted in an adversarial, short-sighted view on disability support needs, and wasteful expenditure on reassessment processes. The current line by line approach to approving items in an NDIS plan is an unnecessary waste of time for the participants, their families and NDIA staff. There is little consistency across consecutive plans and many participants exhaust their funding out of fear it will get cut in a future plan review. This has created an unusual form of trauma for participants and families and unnecessary work for NDIS staff, therapists and lawyers.
The Summer Foundation welcomes the shift to longer plan durations. In particular, people with a lifelong disability should not have to continuously prove their eligibility for the Scheme, or undergo yearly reassessments to get the same funding outcome. Longer plans will provide participants with more certainty and reduce anxiety around plan reassessments.
The Summer Foundation also supports the roll over of unspent funds within a plan’s duration to ensure participants do not lose access to that funding, or feel obliged to spend it quickly for fear of losing it. This change will enable both the Government and participants to get better value out of the funding in NDIS plans.
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A new assessment model
The legislation will allow NDS Rules and legislative instruments to be created to support an assessment and budget model that is more person-centred. To get the budget right for each participant, the new assessment planning process must take a holistic view of support needs, and remove the current focus on establishing a primary or secondary disability.
There is considerable work required by the Government to develop a fit-for-purpose assessment and budget model. This will include consistently and fairly assessing a participant’s home and living requirements and funding levels. This work will need to clearly determine who is eligible for a home and living budget, how shared support will be determined and what forms part of that budget.
It is critical that the home and living budget supports innovation in housing and living arrangements, and does not force people into group homes. Governments have often wrongly assumed people with disability need to live together for there to be efficiencies in the system and their supports. Experience in Western Australia prior to the roll out of the NDIS and international examples have demonstrated that flexible personalised budgets can unlock increased value and more tailored housing and living arrangements.
Continued development of the market is also critical to achieving more choice in housing and living arrangements. Current NDIS policy and pricing models incentivise providers delivering as much in-person support as possible with no reward for supporting people to become more independent. The Government needs to incentivise new user-led services that leverage technology and the built environment to improve the quality, efficiency and outcomes for participants.
A Participant-First Planning Framework to Get the NDIS Back on Track
Periodic Release of Funding in ‘New Framework Plans’
The approach to the periodic release of funding in ‘new framework plans’ must not be overly rigid. It must not prevent participants from using their plans innovatively to best meet their disability related needs. This may include spending funding at a higher rate for a period in their plan to meet more intensive periods of support, or spending more upfront to save more later.
Recommendation 3: The periodic release of funding under the ‘new framework plan’ must not limit a participant’s ability to innovatively use their funding to meet their disability related needs.
A Clear Definition of ‘NDIS Supports’
Defining what constitutes an NDIS support and linking it to the United Nations Convention on the Rights of Persons with Disabilities is a positive step. The definition also links to the social welfare power under the Constitution.
The definition of an NDIS support, combined with NDIS Rules, will help provide participants with more clarity on what disability related supports can be purchased with NDIS funding. However, a strict application of NDIS support could prove shortsighted and create inefficiencies within the Scheme. The Rules must have sufficient flexibility to accommodate diverse participant support needs, particularly given what is appropriate for one participant may not be so for another. Being too prescriptive may also thwart innovation both at the service design level and for individuals, resulting in poor participant outcomes and potentially increased cost pressures on the Scheme.
As an interim measure, the Applied Principles and Tables of Support (APTOS) will be incorporated to determine what is and is not an NDIS support. This must only be a temporary measure. APTOS is based on the flawed idea that there is a hard line between the NDIS and other systems. Despite its intent APTOS has led to seemingly endless arguments about who does what and who pays for it.
Recommendation 4: The definition of NDIS support in the primary legislation must not restrict a participant’s ability to innovatively meet their disability support needs, nor should the NDIS Rules to support this amendment seek to provide an exhaustive list of what is or is not an NDIS support.
Recommendation 5: The Federal Government must prioritise the development of NDIS Rules to support the definition of NDIS supports. This should be supported by work between all levels of government to clarify the core principles for how the NDIS and other service systems will operate, and update shared responsibilities.
Working in partnership with the disability community
The Bill introduces a raft of new powers for the development of Rules and legislative instruments. While this approach to the legislation may be necessary given work on key aspects of the reforms is yet to be completed (e.g. the assessment and budget model), it increases the challenge for the disability community to understand the full impact of the Bill on participant experience and outcomes.
Therefore, it is critical that the Government fulfills its commitment to work in partnership with people with disability and the sector on the development of NDIS Rules and legislative instruments, and on the implementation of the reforms. Purposeful and meaningful engagement and co-design will ensure better outcomes for people with disability. Previous attempts at reform (e.g. independent assessments) were not done with adequate consultation with people with disability and provoked considerable anxiety and fear in the disability community.
Recommendation 6:
The Government must fulfill its commitment to meaningful engagement and co-design with people with disability and the disability community on the development of NDIS Rules and legislative instruments, and the implementation of the legislation.
Conclusion
Reforms to the Scheme are urgently needed. While this initial tranche of legislation is an important first step to provide the framework needed to implement key recommendations of the NDIS Review, the devil will be in the detail of the NDIS Rules and legislative instruments, and the implementation of the reforms. While there are significant risks that need to be monitored and managed, we do not believe that blocking this legislation is in the best interests of people with profound disability for whom the Scheme was intended.
The Summer Foundation is committed to working with people with disability to identify and address any unintended consequences or potential pitfalls related to this legislative change.
We will also work with people with disability, thought leaders, Government and the sector to test and provide feedback on the design and implementation of reforms to ensure they are fit for purpose for the people with disability we serve.
Contact: Jessica Walker Head of Policy, Communications and Systems Change
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