Submission to Senate Committee regarding proposed legislative changes to

NDIS Scheme Ammendments 2024

We are the proud grandparents of aged 13, who is much loved by all our family. has a diagnosis of migrating epilepsy of infancy, causing cerebral palsy, cortical vision impairment, scoliosis, global developmental delay. She is cared for at home by her parents, and carers supplemented by supportive family.

We are extremely concerned at the proposed new legislation National Disability Insurance Scheme Amendments (Getting Back on Track No. 1) Bill 2024 that is currently before the Senate. It is likely to have detrimental impacts on and other high level needs persons, and their families.

The way that this Bill has been hastily put together, rushed through the lower houses of Parliament, and given very little media coverage , is alarming. Especially as this is being done by a Labor Government who came to power on the promise of reform and funding of that reform in the last election in May 2022. This is a betrayal of trust and something that Labour voters would not have expected, and will not be forgotten if it proceeds.

The 71 pages of amendments are cumbersome, lengthy and not easy to read and understand for most parents, family and community. The information is nebulous but ominous, not giving specifics, leaving uncertainty and anxiety regarding process, rules and working out methods to operationalize the changes. National Disability Insurance Scheme Amendments (Getting Back on Track No. 1 Bill) 2024 talks of checks and balances to ensure Government funds only pay for what is ‘fair and reasonable’. It again states that there needs to be ‘quality control’. My question is ‘HOW IS THIS POWER GOING TO BE USED??’ – IS IT going to justify reduction in hours of care/support and reduction in resources??? The words ‘quality control’ give a lot of power to the provider rather than the consumer. It gives extra powers to the Minister/CEO that are not balanced with legislated intentions for use or boundaries can be overridden. The wording of the Bill leaves fundamental components of the NDIS to be determined in the NDIS Rules and asks that we simply trust on that!

needs a secure budget and assurances of support by Government. NDIS is revolutionary in meeting needs and enabling her parents to have a life, where they can work, occasionally go out and have family holidays. My daughter and son in law have been able to work and study, with the care supports and respite provided by NDIS. It has given new life to their family, where they have progressed in their careers, and added value psychologically and financially to their family and community. Productivity studies undertaken from the Productivity Commission show that investment in disability consumers and their families is worthwhile, and gives money back to the community that supported them and the Australian economy. Also, that supporting the capacity of the person with disability including independent supported living (not group homes or institutional care) also adds to the quality and length of life of the person, and of course massive psychological benefits.

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               is currently treated as an individual, where she has been enabled to have
    medical, physical needs, interests, hobbies and relationship and connections
    increasingly met through NDIS. The funding and supports will not provide her
   with an equal life compared to a non disabled person (due to the limitations of
   her diagnosis), but we strongly believe the aim should be to give       the ‘best’
      life possible, through legislation based on affirmative action.

          needs have changed a lot since she became a teenager, just like non
    disabled teenagers do! She needs to socialise, explore music, and greater
   independence from family, whilst still living with family. She and her family
  know what she needs – air conditioning, sensory stimulation, friends, holidays,
     sailing, swimming, neuro linguistics, drama, physiotherapy – just a few essentials
    to make a life. She and her parents want you to listen to what and why she needs
    these things, and who would best provide them. Consumers and their support
   persons are the experts here, not Government administrators and agency
    personnel, who are removed from      and often who do not seem to have
    relevant qualifications and/or experience to understand disability needs,
   changing circumstances and developmental changes of      and other persons
   with disabilities. There are many barriers for        in obtaining suitable
    services and quality of life. There is a shortage of providers, and some do not
   have a NDIS registration number, or agencies close down often at short notice.
         needs services on the ground – not continual assessments, reassessments
   and excessive administrative processes.

     Just one example of current difficulties for        in NDIS funding, that is likely
    to become worse if National Insurance Legislation Insurance Scheme
  Amendments are passed:

      musthaveweeklyphysiotherapy. Withoutthistreatmentshewouldneed
  botoxinjections..Thiscausespain,andrequireshertohaveanaestheic,withthe
   riskofaspirationasshehaslowtone.
   CerebralPalsyAlliancestoppedprovidingalliedhealththreeweekswithout
   notice,henc     andmanyclientshavebeenleftwithoutphysioservices.
  Thereisashortageofpractitioners.Puttingextrarules,hurdlesand
   accountabilitymechanismsinplaceislikelytocausefurtherdelaysand
    restrictions. Whatisneededismoreworkers,trainingofworkersand
   operationalizingworkers,ratherthanincreasedadministration.

       needsaneuronodecommunicationdevicetouseathome
 Theassessmentneededwastobeundertakenbyaprivatespeechtherapistso
  thatareportcouldbewrittentoNDIA. Thisprocesstook8months.Priortothis,
         triedmultipledifferentspeechcommunicationmethodsthroughCPL.
          parentscannotaccessthepaperworkaboutthecommunicationtrials
  thatweretriedpriortheneuronod(duetoCerebralPalsyAllianceagency
    closure),.NDIAwillnotconsiderthemoreexpensivedeviceuntilthereis
   evidencetoprovesheneedstheneuronode(tojustifytheexpense).
         willneedtodemonstrateandgothroughfurtherassessmentsothatthe
 needcanbedocumented,tosatisfytheNDIA.Meaningthatshewillnothavethe

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I watch other friends who have persons with disability in their families. One in particular has shown great love and skill in setting up creative life changing services with the introduction of NDIS. Her son requires 24/7 care and she has been able to fund this in accommodation attached to her home, whilst giving him as near normal life to a person of his age. She cannot get sufficient workers in the local area to provide what he needs. She employed a gardener who had some medical training, not registered with NDIS, who provided a gardening assistant job for her son, giving him a sense of worth, exercise, socialising and breaking down his own isolation and that of older people that he provided gardening services for. My friend has been able to mix socially with friends and have a short holiday, something not possible pre NDIS. Surely a ‘reform’ would not take away these opportunities and progress.

I trust that the Senate will hear our concerns and others concerns and stop this Bill from being passed. Please hear consumer voices and family and carer advocates. They have the answers, hear them and resource them so that all persons who have disability are given dignity, empowered to live a life where they participate, are consulted and given choices. These are basic human rights. Let the consumer put forward their needs and priorities, taking into account the changing developmental needs and changing physical, emotional and behavioural states linked to the disability. Do not take away funds for services that are working for and others.

The very least that this Bill should do is to reach the threshold of the UN Declaration of Human Rights for Disability. Reading this proposed Bill does not give this assurance. It is too general, giving away the rights of the of Australia. The Bill memorandum claims the legislation engages the UN Charter on Rights of People with Disabilities but only uses selected edited phrases which significantly narrow the rights in the legislation. The ‘amendments’ open the way for reducing the right of people with disabilities to live with choices equal to others.

and her family need to use services that they know give the best outcomes. Given that diagnosis and condition is permanent and deteriorating, she should not repeatedly be given uncertainty and scrutinising around her budget and proposed plan. She is an individual, not a ‘one size fits all’ consumer of a service model, implemented by beauracrats.

Some of the language in the proposed Bill shows a punitive, judgemental spirit, where consumers would live in fear of being punished for non compliance. There appears no leniency for first time non compliance, or for a workable review with strong involvement of consumers, where the plan is not meeting the needs, or the consumer wants to explore better ways to meet their needs.

Consumers and families need to see the assessment of needs before it goes to the CEO to be determined. Strong input from consumers is vital at the early states of assessment of needs. is a holistic person, not just a set of needs, that fits into a model. It is how those parts work together to make her who she is. Listen to her voice, take the times to see what works for her, give her choices. She values inclusion and empowerment, just like non disabled people.