Submission to the Community Affairs Legislation Committee Inquiry on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

May 16th 2024

Executive Summary

Autism Partnership is a registered charity committed to providing evidence based support to autistic children. We believe that every child deserves a life of indepence and opportunity.

This submission outlines significant concerns regarding the proposed National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024, particularly its potential impact on the most vulnerable NDIS participants—children with profound autism. We have supported more than 100 families through the National Disability Insurance Agency (NDIA) review and appeal processes. All of these families had their initial inadequate NDIA planning decisions overturned in favour of the participant after prolonged appeals, with an average increase in funding of 260%. This clearly demonstrates the current system’s failure to recognise and meet the complex needs of profoundly autistic children from the outset. The proposed Bill, with its broad powers and shift towards standardised assessments, risks further entrenching these issues, potentially leading to even more rigid and inappropriate plans for children requiring intensive, specialised support.

Defining the Affected Group

We feel it is important for us to clearly define the children referred to in this submission. These are very young autistic children, between 2 and 6 years of age. They are profoundly impacted by autism, with substantial delays in all areas of development. These children have participated in lower intensity supports such as weekly speech therapy and occupational therapy, which have not been beneficial. As a result, a recommendation for intensive early intervention has been made for these

children. More intensive support has allowed these children to achieve their nominated goals. The broad and potent powers proposed in this Bill could severely limit these children’s access to essential, evidence-based supports, thereby causing distress to families and undermining the well-being and developmental rights of these children.

Introduction

The NDIS is designed to support Australians with disabilities by ensuring their participation in society through equitable access to necessary services. However, the proposed National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) risks severely impacting young children with profound autism by enabling restrictive measures on their plans, which are often already insufficient to meet their needs.

Historical Context and Current Concerns

Our experience since 2021 shows a concerning trend: 100% of the initial NDIA planning decisions for families in our intensive early intervention service were inadequate. All these cases, when appealed externally at the AAT, resulted in a funding increase, with an average of 260%. This pattern indicates a systemic issue with initial assessments and the immense strain placed on families forced into prolonged review and appeal processes.

Impact of the Proposed Bill

The proposed Bill allows the NDIA to impose restrictions on the use of plans such as monthly funding restrictions, compelling families to adhere to ineffective services during lengthy appeals. This not only disrupts the children’s developmental progress but also is traumatic for families who are forced into drawn out, adversarial interactions with NDIA in order to advocate for their children’s rights. All of the families we have supported through the review and appeal process would have been accused of ‘overspending’, that is, spending their budget more quickly than 1/12 per month. In the end, in every case, the issue was incorrect initial planning by the NDIA, not financial mismanagement by families (as evidenced by the overturned funding decision for every family).

Increasing the Powers of the National Disability Insurance Agency (NDIA)

Increasing the NDIA’s powers to restrict plans and penalise families for ‘overspending’ when history tells us that 100% of the time the NDIA has been in the wrong, is very dangerous for the children and families we support. The intra-plan-inflation has historically, in 100% of cases we have been involved in, have been driven by poor planning processes and NDIA decisions, not families misusing funds.

We saw plan restrictions imposed on families at the AAT toward the end of 2022 by way of monthly spending limits and forced plan management with specific plan managers decided by the agency. Families who were able to privately pay for intensive services during this period of restriction were reimbursed for their out-of-pocket expenses following a resolution at the AAT. Families who could not afford to privately fund support were forced to discontinue intensive services. The cessation of appropriate supports for young children with profound autism at this critical point in their lives is unacceptable. The lack of accountability for these actions and the negative outcomes they cause is alarming.

In the last 4 months, there has been a further visible shift in NDIA culture towards a restrictive and mistrustful approach towards participants. Planners are increasingly directing families to use specific “stated supports” without regard to their effectiveness, availability or suitability for the child’s unique needs. This not only limits family autonomy but also jeopardises the children’s potential to develop new skills. Currently, there is no onus on the NDIA to provide any evidence that the stated supports are likely to be effective and beneficial for an individual child. By restricting which supports a family can access, the NDIA is inhibiting their choice and control and minimising their autonomy to make decisions that are best suited to their child at a given time.

Our concern is that strengthening the powers of the NDIA to enforce stated supports will have a negative impact on the developmental outcomes of children. Such restrictions directly contradict the Government-endorsed ‘National Guideline for Supporting the Learning, Participation, and Wellbeing of Autistic Children and Their Families in Australia’.

We also have significant concern about the introduction of the needs assessment and the lack of detail provided. Of great concern is that the needs assessment would not be a reviewable decision. There is no pathway in the Bill for a participant to

Conclusion

The proposed Bill’s provisions, which allow for greater NDIA control and restriction of plans, will likely lead to detrimental outcomes for children with profound autism. This legislation, if passed without significant revisions to protect these vulnerable children, could cause irreversible harm and fail to meet the foundational goals of the NDIS.

Recommendations

• Amend the Bill to ensure that plan restrictions are not applied to children when the planning decision is under internal or external review.
• Establish mechanisms for families to receive expedited reviews and appeals to avoid prolonged periods of inadequate support.
• Implement stronger accountability measures for the NDIA’s planning decisions, especially when those decisions are overturned on appeal.
• Ensure that capacity building therapeutic supports in early intervention remain flexible, allowing families to adapt funded supports to meet their children’s needs. This ensures that children are not forced to adhere to predefined “stated supports” that have proven ineffective for them.
• Ensure all decisions made by the NDIA that impact a participants plan, including the proposed ‘needs assessments’, are legislated as reviewable decisions.

We urge the committee to consider these serious concerns and to engage with stakeholders, including families and service providers, to ensure that the NDIS genuinely supports its participants’ best interests and upholds its foundational principles of empowerment and inclusion.