Explainer: Amendments to the ‘Getting the NDIS back on track ’ No 1.

Bill

The Government responded to concerns about the lack of explicit commitment to co-design in the Bill with amendments which passed the House of Representatives on 5 June 2024. These amendments require the Minister to have regard to the principle of co-design in subsection 4(9A) of the NDIS Act when making legislative instruments establishing:

how needs assessments will be conducted; and
the method to be used in calculating a participant’s budget. These amendments do not legally require the Minister to co-design these instruments – hey would only require the Minister to have regard to the value of co-design. While the amendments are helpful statements of principle, they do not fully address concerns that the disability community could be excluded from development of these legislative instruments, if, for example, a future Minister does not maintain that commitment

Response: It must be noted that this proposed amendment is a powerful political issue. The previous government demonstrated its commitment to codesign. This bill demonstrates no such commitment. Co design is part of the principles of Choice and Control. Without Codesign commitment Choice and Control is not a given. Therefore the NDIS could risk alienation of the bill by constituents, and result in plans that are developed without participants in mind rendering NDIS plans that are created useless and a waste of government funding and time. Including and guaranteeing codesign therefore is a sound economic ingredient. Without guaranteed codesign there are risks the bill will lean towards a ‘one size ﬁts all’ model.

What other amendments have been proposed? The Committee recommended the Bill require the Minister to be more transparent about what consultation with the disability community has taken place when developing each legislative instrument. This would then enable Parliament to make more considered decisions about whether to veto (‘disallow’) a particular legislative instrument because of lack of consultation. Accordingly, the Committee recommended a ‘consultation statement’ be tabled with all legislative instruments made under the NDIS Act. To implement the Senate Committee’s recommendation, the Government proposed a further amendment in the Senate. The amendment would require the Minister to provide a statement describing the nature of the consultation, the people and organisations consulted, and a summary of the views expressed by those people and organisations, for all legislative instruments made under the NDIS Act. The Supplementary Explanatory Memorandum addressing these amendments notes the importance of Disability Representative Organisations (‘DROs’), and their role in consultation and co-design activities with the disability community. This proposed amendment would provide greater likelihood that DROs will be engaged in developing legislative instruments and would enable Parliament to conduct its oversight functions more effectively. The Senate is yet to consider and vote on this proposed amendment.

Response: DRO’s are an integral part of consultation processes. Just because a selection of DRO’S have been consulted does not mean that the consultation process has been inclusive of all DRO’s. People with Disability (PwD) need to be satisﬁed that adequate consultation processes have been conducted and a list of those who have engaged in the processes would possibly be able to assure PWD that appropriate consultation processes were conducted and extensively with recognised representatives in the community.

Whole of person’ funding

Another priority issue for the community is the Bill’s failure to assess and fund participants at a ‘whole of person’ level.
The Bill proposes that the needs assessment and budget-setting method would be limited to considering needs that stem from impairments that meet the disability or early intervention requirements for entry to the Scheme. This approach would impose artificial distinctions in the way a person with multiple and interrelated disabilities accesses supports and could result in them receiving inadequate funding for supports

Response: The Whole of person funding approach is a precautionary measure that could recognise the impacts of the persons disability, and the psychosocial model that may contribute to the impacts of the persons disability or improve the capacity of the person’s impacts on their disability. Having half the story will skew the results of assessments and appropriate funding, resulting in inadequate planning and inappropriate funding. Investment response into the whole of person funding is more economically viable than a ‘band aid approach for a leaky bucket’ approach. Capacity can be increased or reduced depending on the correct use of whole of person approach and inclusion of life contributing factors.

An example of this is my son, Michael Flavell, who is an NDIS participant. Michael has Down Syndrome, Autism, Severe Intellectual Disability, Repaired Hirschsprung’s Disease, Coeliac Disease, Ventricular Septal Defect, Cataracts, non-verbal, and challenging behaviours, as well as a peroneal subluxation, osteopenia, and dystonia meaning he is unable to walk more than 20 metres and uses a wheelchair. He lives in a group home that although they are paid to care for him, they have neglected him. In their care he gained an extra 20 kilos (over 18 months) resulting in him being morbidly overweight, and have not cleaned his teeth (he is completely dependent on staff for all help) resulting in periodontal disease – gingivitis and Losing his teeth because of staff neglect. His teeth had to be extracted while under general anaesthetic which posed more health risks as he is overweight due to staff not following dietician plans. I have complained to the NDIS Commission four times and there have been no changes in his care so I had to remove him from the home he lived with for seven years with his friends. All because staff and management lacked care factor and neglected him.

So what has this got to do with Whole of person funding? When his new plan was approved they removed his exercise physiology funding = an important section of his mobility therapy. They provided $15,000 for improved daily living, meaning I had to make choice. Do I stop speech therapy? Do I stop occupational therapy? Do I stop physiotherapy? Do I stop exercise physiology? I stopped speech therapy and occupational therapy as he needs to be able to be as mobile as possible to extend his life. All of the above mentioned impairments are related to his disability however many aspects of his disability were not considered in the plan. Lack of funding for his therapies will exacerbate his condition as I had to make a decision on which therapy he would have to stop.

The Bill proposes that the needs assessment and budget-setting method would be limited to considering needs that stem from impairments that meet the disability or early intervention requirements for entry to the Scheme. This approach would impose artificial distinctions in the way a person with multiple and interrelated disabilities accesses supports and could result in them receiving inadequate funding for supports.

Response: as you can see it has already happened to Michael and the bill has not even been changed yet. Please remember this proposal was first introduced by the previous government in the form of introducing Independent Assessments. What was the result of the proposed

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introduction of this bill? The whole of the disability community erupted. Why is it being proposed again?

Another factor to consider is when providers are paid to provide an inclusive service to a standard and are not doing it, and as in Michael’s case are neglecting why does he have to move? Why does he have to leave his friends, the only ones he has had for 7 years? Why does he have to be punished? Why can’t the bill cover this issue? Providers should be removed from the house and changed for more appropriate providers who can provide a service that is paid for under the NDIS. However this is not done, the more vulnerable have to leave their homes. He was penalised for the poor service he received. I believe this would contravene UNCRPD. The bill needs to consider penalising providers rather than participants. This would ensure reduction in the complaints system and reduction of NDIS costs, and an incentive to SIL providers who will not and cannot provide an adequate service funded under the NDIS. Not enough focus is placed on the participants’ experiences. While focus has increased on fraudulent providers as it should, and the blow out of the costs of the NDIS, there is little focus on providers who take the money but do not provide adequate services, and cut costs at the expense of participants. For example, the SIL provider for Michael cut costs by reducing the grocery bill from $140 per person in the house to $75 per person in the house. So in addition to the neglect service provision, the provider did not adequately provide for nutrition. This is an example of where if those who could not provide the service they are paid for should be changed for another provider rather than have the participants have to move from their homes. Again penalising the providers would impact on reduction of complaints, and of NDIS overall costs.

4.2 Right to receive needs assessment report

Many people raised concerns the Bill did not give participants the right to view and comment on their needs assessment report before it is finalised. What has been amended? The Government responded to these concerns with an amendment that requires the CEO, upon receiving a needs assessment report, to give a copy to the participant as soon as practicable. The Supplementary Explanatory Memorandum explains ‘[i]t is necessary for the participant to receive the report after the CEO, as the CEO cannot provide it until it has been received from the assessor.’

Response: Again, this proposal was first introduced by the previous government and the disability community has resoundingly rejected it so why is this government proposing it again when it is clear that this approach, i.e. – any assessments are done with the permission of the participant so in the principles of transparency, the first person to receive the results of their own assessment should be the participant. Any other proposal, such as providing the copy to the CEO first is unacceptable.

4.3 Replacement assessments

As we set out in our previous Explainer, the Bill did not initially make clear what rights a participant would have to challenge or replace an inappropriate needs assessment. This was raised as a concern by many submissions to the initial Senate Committee inquiry. It does not appear to have been fully resolved. What has been amended?

Response: Once again, the previous government tried to introduce this proposal and was resoundingly defeated. Why is it being introduced again? The bill needs to be explicit about the rights of participants to challenge inappropriate needs assessments. This issue is pivotal to producing appropriate NDIS plans for participants. What is the point of funding plans that are of no use?

What has been amended?

The Government made several amendments to clarify how the Bill would approach needs assessments. These amendments and accompanying Explanatory Memoranda clariﬁed that a needs assessment itself would not be subject to review. This is likely because it would be too difficult for an NDIA reviewer (on internal review), or a Tribunal member (on external review), to review the method or conclusions within a report without the skills and expertise of the health professional who prepared it. Instead, the Bill says if a participant is unhappy with conclusions in their needs assessment report, they can request a replacement needs assessment. The Government’s amendments also subtly shifted the legal test for considering whether to order a replacement needs assessment. Initially, NDIS Rules were to prescribe when a replacement needs assessment could be arranged. Now, the amendments enable a replacement needs assessment to be arranged where the CEO ‘is satisﬁed…it should be undertaken’ – although NDIS Rules may still dictate how the CEO decides whether or not it should be undertaken. The amendments also made clear that if a participant disagrees with the funding provided in their NDIS plan, they can seek review of that funding decision; and an internal reviewer or Tribunal member would have the power to order a replacement needs assessment as part of that review process. However, a decision as to whether or not to order a replacement needs assessment would not be a reviewable decision.

Response: All of these proposals will lead to more cost blowouts!! If an assessment is done, than a copy should be provided immediately to the participant without delay. If the participant is not happy they should be able to review it with their own therapist of their choice. They should then be able to appeal the decision with the evidence of their own therapist and or any other evidence they have. A replacement assessment may be just as inappropriate as the ﬁrst assessment. So then what happens? Bear in mind that by this time the individual participants have probably been subjected to multiple assessments all their lives so why expose them to even more, especially when there are more than likely other multiple assessments that are current and available?

‘Exceptional circumstances’ for additional funding

The Bill proposes preventing the NDIA from paying any money in relation to a participant’s NDIS plan if the participant has already spent their allocated funds. The NDIA would only provide additional funding to a participant if ‘exceptional circumstances’ (as deﬁned in NDIS Rules) applied. This meant that until those Rules were made, there was a risk the NDIA would be legally barred from providing additional funds to a participant who urgently needed supports. This issue appears to have been resolved.

Response: This may have been resolved but it appears that the other circumstances where funding may have to be added above the allocated funding is considering the changing circumstances for the participant, especially those with complex and high needs disabilities that change in intensity without warning.

7. Constraints on obtaining supports, spending funds and plan management

The Bill proposes new powers allowing the NDIA to impose conditions on how a participant obtains supports, restrict spending of ﬂexible funding, or override a participant’s plan management request. Many in the disability community have expressed concern that these powers are too broad. The community called for the Bill to provide more guidance and safeguards on their use.

What has been amended? Nothing yet.

What amendments have been proposed? An amendment from Dr Ryan proposed that the power to impose conditions on how a participant obtains supports should only be used by the NDIA where it is ‘reasonably necessary’ to achieve a speciﬁc purpose consistent with the objects of the Scheme, and where to do so would not be ‘unduly burdensome’ for a participant. Dr Ryan’s amendment reﬂected the substance of our recommendation to the Senate Committee. However, this amendment was not passed by the House of Representatives.

The Senate Committee acknowledged the community is very concerned about the potential impact of these new powers. Accordingly, the Committee recommended the Government provide clarity on the circumstances in which the new NDIA powers will be used. The Government has not introduced amendments or provided further clarity on these other new NDIA powers.

Response. I have major concerns about this proposal within the bill. As I have explained in my experience with my son Michael’s NDIS plan, I was hoping for funding to cover his exercise physiology, physiotherapy, speech and occupational therapy for 12 months. This was not provided. In the plan the planner had entered that the funding should be used for speech and occupational therapy (it was only $15,000 so only allowed for two therapies). As he has limited mobility and there was no funding for mobility, I had to refuse the purpose (it was not a stated support) and drop the speech and OT funding in favour of mobility funding. Parents, carers and service providers are in a better position to make informed decisions on these funding outcomes so these proposals could set a dangerous precedent.

10. Issues raised by States and Territories

As the NDIS is delivered jointly by the Commonwealth, State and Territory Governments, reforms to the Scheme have been subject to ongoing discussions and negotiations between Disability Ministers and at National Cabinet since the NDIS Review concluded in December 2023. State and Territory Governments commented on the Bill in a submission to the Senate Committee Inquiry from the Council for the Australian Federation (‘CAF’), a body that represents these governments. The CAF submission raised several concerns about the Bill – many of which overlap signiﬁcantly with matters discussed in this and our previous Explainer. Broadly, these are:

the Bill was developed too quickly to allow proper consideration of the NDIS Review’s recommendations, and to allow proper and full consultation with States, Territories, and the disability community;
the pace and sequence of the reforms in the Bill might leave gaps for people with disability, especially if they come into effect before States and Territories have established systems for foundational supports;
the Bill gives more power to the NDIS Minister to make legislative instruments, and to the NDIA to administer the Scheme, with limited input from State and Territory Governments, and could expose participants to negative consequences; and

the CAF did not consider the Bill would address issues of fraud, misconduct and poor service providers in the NDIS.

Response: This bill must consider fraud, misconduct and poor service providers in the NDIS as the whole scheme could be undermined by these issues. The cost blowouts are directly related to these issues however rather than tackling these issues in the bill, the bill is focusing on ‘victim blaming’ i.e. cutting costs of NDIS funding to participants as the main focus of reducing spending in the NDIS. Multimedia have presented NDIS participants as the ‘culprits’ of cost blowouts with claims of inappropriate use of funds, while millions of dollars are distributed to solicitors representing NDIS in AAT hearings, poor service delivery by providers as was my son’s experience as I have described, and fraudulent claims by unscrupulous providers. The media has not covered the actions of neglectful and poor service provision that appears to be common practice in SIL providers. Here is the perfect opportunity to signal out and legislate against those providers who should not be providing anything to NDIS participants.

Carmel Flavell