National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024

This brief submission to the Senate is to provide feedback from real-world experience of improvements required to help get the NDIS Back on Track.

Solace Coordination is a small family-owned business on the Gold Coast in Queensland. Solace Coordination supports adults living with progressive neurological diseases (PND) across northern NSW and Queensland. This specialist support coordination work requires nimble responses to the needs of people whose support needs change rapidly, robbing them of any level of independence. It is the experience of Solace Coordination that the NDIS is failing these participants, and their informal supports, more than ever, exposing them to systemic abuse and depriving them of living their best lives.

According to NDIS Quality and Safeguards Commission Report the number of Participants with support coordination funding as of June 2023, was approximately 276,000 participants. They represent 45 per cent of active participants in the NDIS. The Report dissects the primary disability groups and the percentage of those participants with support coordination. Solace Coordination works with a cohort of participants who, whilst in the minority within these disability groups, are extremely complex and who require intense, timely intervention, with a range of professionals, both mainstream and NDIS funded, to best respond to progressive conditions. The NDIS has not responded well to diverse participant needs.

Solace Coordination works closely with participants, informal supports, and family decision-makers (geographically close or not), building trusting and respectful relationships. We can do this well because of our lived and learned experience and an understanding that each participant is unique. What would allow us to do our job even better is adequate Support Coordination funding across the life of the NDIS plan, based on the complexity of the participants, and their changing needs. Our cohort is mostly participants with younger onset dementia, a growing cohort; and those with other progressive neurological conditions such as Parkinson’s Disease, MND, Spinocerebellar Ataxia. We dedicate our efforts to treating each participant as an individual, supporting them to live their best lives with the dignity they deserve.

It is difficult to envisage making the lives of these particularly vulnerable clients, and their exhausted informal support people, harder by considering the implementation of any kind of hub model where further delays and complexities are created, choice and control are diminished, potential conflicts of interest may be created by role confusion, or preferential treatment within this kind of model, and a lack of personalised outreach support provision assuming the expectation is that participants with these conditions, or their supports, visit these hubs for their support. It also raises a question about whom the participants turn to for support if there was any kind of unresolved conflict between participants or family members with the people within the hub. For our participants, this type of support proposal is just not possible. Under the current model of individualized support provision, people have the choice and control to work with another provider of their choice.

The Australian Government has identified that part of the amendment to this Bill is to make the NDIS more about people and set participant budgets at a whole of person level, ensuring every NDIS dollar gets to those for whom the Scheme was created. Therefore, we implore the Australian Government to take a broader view of participant needs, the current administrative burden, and inefficiencies in delivering those NDIS dollars to participants, and particularly the timely response required of the NDIA/NDIS systems to meet changing needs.

We would also implore the Australian Government not to design an even more complex system, with additional barriers to access, in the hope of evidencing savings.

It is the experience of our participants, their informal supports, and Solace Coordination, that

excessive amounts of time and precious funds are being wasted on working through the labyrinth of teams that have their hands across decision-making processes such as plan reassessments, S100 reviews, and change of situation submissions, all of which are common when supporting participants with progressive, life-limiting diseases.

This creates unacceptable levels of distress for vulnerable participants and their informal support network, if they are lucky enough to have that support. Participants remain in unsafe environments for long periods to the detriment of everyone’s health and safety, without appropriate Assistive Technology to ameliorate this problem. The common fall- tout is the ill-health of stressed and exhausted carers resulting in their hospitalisation, whilst the NDIA unreasonably delays increased support solutions.

Our detailed knowledge and experience with NDIA have consistently shown:

• Lack of capacity to respond in an informed way to people with progressive conditions
• Poor workflow knowledge and processes from access to exit of the system
• Inadequate protection, privacy and secure storage of highly sensitive personal and family information (documentation submitted is regularly ‘lost’ or cannot be located, this is simply unacceptable)
• Without substantial professional and expert assistance, the participants and families we support would not be able to access the critical care and services required to meet basic human needs. This makes NDIS inaccessible to most
• A complete lack of understanding by most NDIA/NDIS staff of progressive and life-limiting neurological disabilities. Human rights are not upheld, instead, the participant and their family need to be put through additional stressors to receive adequate care in an environment that will keep them safe and able to live their best life for the time they have. A dedicated team of decision-makers, with expertise in this area, is required to act with efficacy concerning this cohort of participants.
• Social admissions to hospitals are frequent as the wait time for responses from NDIA is poor. NDIA will not fund future needs, however, when additional reporting and a change of situation is submitted, the length of time taken to respond is far too long and results in unnecessary hospital admissions to keep the person safe and housed.
• Significant funding is wasted on essential AT hire costs due to the delays with AT purchase requests.
• Significant funding is wasted on sourcing and purchasing new equipment when AT could be going back into an equipment pool for consideration when someone passes away e.g. a $40,000 wheelchair, hardly used, and a Hi-Lo bed sitting in storage.
• Lack of consideration given to levels of SDA stock in the growing Gold Coast region. The Home and Living (HaL) team are funding SDA options that are non-existent. Consideration must be given to where we can place people with progressive conditions, so we do not continue to place them at risk. Residential Aged Care is not appropriate.
• Costly Allied Health Reports are being completely ignored, or are not being read, as part of the decision-making process, and NDIS Participants are left in unsafe situations – or with a battle for a social admission to hospital, when there is no medical need because there is a housing crisis. Private rentals are NOT accessible, and the SDA available on the Coast is not a two or three-resident, Improved Liveability SDA.

Solace Coordination supports New Framework Plans that provide flexibility and clarity around expenditure and will reduce excessive wait times for decisions relating to the use of funding, contingent on the required needs assessment not resulting in further delays and expenses for participants, which has been past reality. Particularly, if the opinions of independent qualified experts, expressed in these assessments, are ignored, or their reports not being read at all.

Strengthening the NDIS Quality and Safeguards Commission

We welcome the NDIS Quality and Safegards Commission being strengthened to move it beyond its’ reputation of being a toothless tiger providing no outcomes for participants, families and service providers reporting unacceptable behaviour by individuals, organisations, and the market.

We further welcome scrutiny of all providers of Support to participants, but caution the government that registration will not, and does not, insure against unprofessional behaviour. Registration is a financial and time-consuming burden on small providers. Solace Coordination (three staff) would much prefer audits which seek input from participants and their support networks as an indicator of good practice on the ground.

Finally, we also welcome the Government continuing to consult people with a disability and the disability community as part of introducing changes to the NDIS legislation, particularly as the changes address some of the key recommendations from the 2023 independent review of the NDIS and the Government suggests it is driven by this review, as well as the Disability Royal Commission, to ensure a better experience for all Australians with disability, their families and carers.

There is much to be improved in the current NDIS model, but from our experience, it is mostly about the failings of administrative and system processes, lack of easy access, extremely poor communications, and burdens around reporting frameworks which don’t provide effective analysis of what is happening with participants, and what improvements can be made to allow participants to live their best lives.