NDIA Accountability Project

Support coordination challenges for adults with progressive neurological diseases

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

Submission 28

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

This brief submission to the Australian Government is intended 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.

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 whom the Scheme was created for. 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.

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 reassessments, S100 reviews, and change of situation reviews, 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. The very real fallout has been participants remaining in unsafe environments, without appropriate assistive technology and ill-health resulting in the hospitalisation of no less than four carers during the past six months, whilst the NDIA has unreasonably delayed increased support solutions for their loved ones.

Our detailed knowledge and experience with NDIA have consistently shown:

  • Lack of capacity to respond.
  • 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 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,

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

Submission 28

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 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 read at all.

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

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.

Jessica Brownsey Director Solace Coordination Nerang, Queensland 16/05/2024