Impact of Bill on essential disability supports and capacity building activities | External submission

Attn. Legislative Affairs Committee

Cc The Hon. Alison Byrnes MP Cc The Hon. Kate Washington Cc The Hon. Michael Sukkar MP Cc The Hon. Natasha Maclaren-Jones Cc The Hon. Hollie Hughes

16 May 2024

I am writing to you to express my concern about planned reforms to the National Disability Insurance Scheme (NDIS), as they were outlined in The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. As a Support Coordinator, director of a Support Coordination provider service, a person with disability and grandmother of two children on the Scheme, I ask for your support in making sure proposed reforms do not pass into law.

These reforms pose many risks to people with disability in Australia. Changes to the NDIS Act, for example that amend or remove government responsibility to provide access to reasonable and necessary disability supports, will disadvantage many disabled Australians; and prove more expensive in the long term as disability needs are neglected.

I am concerned that:

The Bill places essential NDIS Scheme architecture decisions with the legislative instrument (the NDIA Commission), rather than placing decision making as part of primary legislation; this means there will not be parliamentary oversight over the development of future NDIS delivery design.
Capping the cost savings measure at 8% p.a will fundamentally limit the ability of the Scheme to achieve quality participant outcomes, and potentially impact safe access to essential disability support which will be compromised by the changes contained if the Bill proceed.
As yet, there is no publicly available Bill Implementation plan (or formal acceptance of the NDIS Review recommendations), while implementation has clearly begun, as evidenced by participant plans that omit Support Coordination, even when this service is required. This Bill Implementation plan needs to be shared transparently and as a priority, so that the community, and parliament, can understand the vision and intention of the Bill. The NDIA and NDIS staff also need to be made aware that these changes have not yet been ratified and should not be implemented prior to the Bill being ratified.
There are safety risks associated with rapid change management and access to support during transition periods, how have these been identified and mitigated? This needs to be a major consideration in the Bill Implementation Plan.
There is not enough detail and scaffolding in the Bill, regarding Needs Assessments. These will be mandatory assessments and will determine plan budgets. These must be delivered by qualified health professionals, as recommended by the NDIS Review. We must get the design right BEFORE legislation is changed. Appeal rights will need to be clarified prior to the changes being implemented.
The Support Needs Assessment will directly inform plan budgets. The ‘method’ for this will be determined by the Minister (subclause 32K(2)). – this should be detailed in the

primary legislation and clarified transparently prior to Bill Implementation. Without
transparency principles outlined in the legislation, this process will not have parliamentary oversight, and we return to the issue of the method of budget-setting taking place in a black-box i.e. utilising assessment scores in an unknown and potentially unproven manner. Key principles around this ‘method’ will need to be included in the NDIS legislation, for transparency, trust, sound fiscal management; and to protect the rights of NDIS participants.
Current rhetoric suggests NDIS supports will be more limited in future and will only include defined supports. Which means people may miss out on essential disability supports or that they will be required to forego some required supports for others.
While I am in support of foundational supports, which will allow people like myself to receive the supports I need, the Bill should not be passed until the foundational supports are in place, and have been clearly outlined, to prevent creating new service gaps.
Leading lawyers have indicated the APTOS table is not ‘useable law’ and should not be linked to the legislation. More work must be done with States and Territories to ensure there are no service gaps.
The full impact of the Bill on the care economy has not been considered – what is known about the impact on access to supports? Employment of carers and people with disability? Loss of essential support providers? Access to allied health? Impact on small business and sole traders? Without detailed analysis, the Bill may lead to unintended or unconsidered consequences.
Segregating groups of participants through a ‘classes of participants’ system determined by ‘identifiable characteristics’, are at risk of becoming discriminatory and no longer being individualised.
The proposed changes will disproportionally impact and potentially exclude, people with psychosocial disability, autism and intellectual disability without sufficient services being put in place to provide supports to this cohort. More clarification around what support services will be put in place to ensure that people with these disabilities receive essential services is required prior to the Bill being ratified.
Section 30 of the Bill grants enhanced Plan Revocation powers to the NDIS CEO. We suggest these may need to be reviewed, especially the 90-day non-response timeframe where there is evidence that the delayed participant response is disability-related. There are risks here for high needs participants. We refer the reader to the case of David Harris for such an example. David Harris was left to die alone after his NDIS payments were cut off (smh.com.au)
An amendment to Section 34 (item 46), means that only impairments identified at the point of NDIS access can have supports funded, which may disadvantage complex, acquired and progressive disability.
The process to determine, and offer, defined NDIS Early Interventions would need to be described in the Bill, to ensure the scaffolding for effective, evidence-based, contemporary, and co-design of early intervention is in place.
The structure of the flexible budget model may mean that if this is insufficient to meet basic ‘core’ support needs, that capacity building activities would have to be swapped out to prioritise day-to-day living needs. This could mean participants cannot access capacity-

building supports; allied health; or other supports that have potential to reduce longer-term needs. This could ultimately increase the cost of the Scheme long term.

  - There does not seem to be any recourse for participants to appeal if they are not happy with
      the funding they have been allocated. This needs further clarification prior to the Bill being
         ratified.
  
  - The NDIS Navigator role, while I am supportive of the role, is flawed detailing one provider
      per region. This significantly impacts the underlying principal of choice and control for
        participants. Rather than a single provider in a region or even a tendered process, it should
     be replaced by a licencing model, with registered Support Navigator providers who are able
       to demonstrate capacity to deliver the services as per the NDIA guidelines, issued a licence
        for delivery within a region. It should be noted that all Support Navigation Services should be
        registered, should have minimum qualifications and/or experience and should be 100%
      independent.  I have worked in other industries where Co-ops between other organisations
     have been put together for tender purposes and this has always led to one company taking
       over, making changes, laying people off and eventually losing tenders.
  
  - I am concerned that organisations like NIB Thrive have been making substantial donations
     and are the only organisations that are happy with recommended changes and that they will
     have a monopoly of services and will try and have the NDIS run like a private health insurer.
  
  - In recent weeks, there has been significant discourse from the current government, the NDIS
       Minister, and Bruce Bonyhady concerning the concept of "co-design" within the NDIS
     framework. However, there is a notable absence of tangible evidence showcasing
      meaningful engagement in this process, as well as a lack of clarity on how this co-design
         initiative will be implemented. Merely conversing with a select few individuals with
         disabilities and certain peak bodies falls short of representing the diverse spectrum of
        participants and providers within the NDIS community. True co-design necessitates inclusive
      involvement from a broad range of stakeholders, ensuring that the voices of all those
     impacted are heard and valued in the decision-making process.
  
  - Without concrete steps to facilitate genuine collaboration and co-design, the rhetoric
      surrounding this initiative risks being perceived as hollow promises rather than actionable
        strategies for positive change within the NDIS. It is imperative for the government and NDIS
       leadership to demonstrate a commitment to inclusivity, transparency, and meaningful
     engagement moving forward.
  
  - S10a treats one specific article of the UNPRCD as higher priority and ignores the rest only
       focussing on personal mobility with no reference to equal opportunity, no reference to
     economic participation, and limited references to a sickness benefit. This is confusing as it
       gives presumption that people can be "cured" of their disabilities. For most people with
         disability, the disability is permanent, and while they can function with help, they are unable
       to grow a limb or change genes or that they haven’t undergone some type of miraculous
       recovery. This assumes that people on the Scheme are sick rather than disabled and can be
       treated.
  
  - There is no reference at all to appropriate housing for people with disability which is at the
       forefront of most community based discussions relating to people with disability.
  
  - Section 10c which is what would not be considered an NDIS support takes a very prescriptive
     approach to assuming what a person with a disability needs to effectively manage the risk in

Their life and help them achieve their goals

There is a wide variance in the dreams, aspirations, complexities and needs of the disability community, and this perspective undermines the very principals of the NDS which was set up to allow people with disability to live independent and productive lives, as they would had they not had a disability. Diminishing PWD’s input into decision making around areas of their lives takes the Scheme right back to where it was before the NDIS was introduced, where people were dis- powered and had limited say over the supports they received.

Currently, I’m concerned the changes will impact the participants I work with, predominately psychosocial, who have increased their capacity significantly due to the innovative and individualised supports they have received thusfar through the NDIS. Many have entered open employment and have only been able to do so because of the level of support received from the NDIS. They failed to achieve this before the NDIS and will fail again if the NDIS is changed so significantly that they have to choose daily supports over capacity building.

The Participant Service Guarantee is currently on pause. There are unprecedented delays in plan reassessments, impacting access to supports, and causing enormous distress for participants and families. I am concerned these issues will only get worse, should the changes outlined in the Bill, proceed. More work must be done prior to ratification to ensure the scaffolding contained in the Bill is solid enough to set up an optimal NDS 2.0, BEORE dissolving the current legislative framework. I am writing to ask you to STOP the changes to the NDIS Act (2013) going through until due diligence around Commonwealth government responsibility to disabled people, has occurred.

Regards,

Justine Leonard

Justine Leonard JP, M Mgt, Grad Dip Psychology, Dip Counselling Chief Operations Officer

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