NDIA Accountability Project

Reconsideration of NDIS Supports definitions and fraud reduction measures

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Australia

Submission to Senate Standing Committee on

Community Affairs

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

May 2024

About Down Syndrome Australia

Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. Our purpose is to influence social and policy change and provide a national profile and voice for people living with Down syndrome. Our vision is an Australia where people living with Down syndrome are valued, reach their potential, and enjoy social and economic inclusion. In line with the Convention on the Rights of Persons with Disabilities (CRPD) and Australia’s Disability Strategy (the Strategy) we work towards a community where all people with disability are included, and their rights respected and protected.

Down Syndrome Australia and its members and partners work together to provide support for people with Down syndrome and to make Australian society inclusive for people with Down syndrome. We work in partnership to maximise the opportunities and support for people with Down syndrome and their families and support networks.

Down syndrome is a genetic condition in which the person has an extra copy of some or all of chromosome 21. This additional chromosome results in a number of physical and developmental characteristics and individual variation in the level of intellectual disability. There are more than 13,000 Australians who have Down syndrome and approximately 1 in every 1,100 babies in Australia are born with Down syndrome.1

For more information contact:

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

Down Syndrome Australia (DSA) is pleased to provide feedback on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) introduced to Parliament on 27th March 2024.

DSA is a champion of the National Disability Insurance Scheme (NDIS) and is invested in any changes to the Scheme which impact the lives of people in our community. The changes to the NDIS proposed in the Bill will impact the lives of people with disability who access the Scheme.

DSA is generally supportive of the proposed changes to legislation where these improve the experience of people with Down Syndrome. In preparing this submission, DSA has consulted with our member organisations, with members of the Down Syndrome Advisory Network and some parents and carers.

Accessing, analysing and extrapolating outcomes of changes to legislation can be complicated for many members of the community and DSA has assisted members of the community with Easy Read and plain English versions.

Down Syndrome Australia recommends that all information which is developed for the community, especially about the NDIS or other disability matters, is provided in accessible formats, such as Easy Read.

One issue which has consistently been voiced in the community is process – that the proposed legislation which has been presented supports recommendations 3, and elements of 5, 6, 7 and 17 without those recommendations being endorsed. The Government has only publicly expressed support for recommendations related to Foundational Supports. This has caused confusion about the chronological approach to the Independent NDIS Review and NDIS reform, and how recommendations might be legislated or supported by the Government. Clarification on this process is imperative to relationship building between the Government and people with disability.

“The Government should talk to people with disability and intellectual disability”.

Person with Down Syndrome, NSW

DSA is also aware of issues with the current operation of the NDIS which will not be addressed in the proposed Bill. For example, there are inconsistent approaches to funding and approval of invoices, technical changes which don’t meet community standards and the continuing issue of thin markets and market failures. These issues cannot remain unresolved during any longer-term transition period for multiple legislative changes and reforms.

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Australia

Down Syndrome Australia recommends that the NDIA and DSS notify members of the public about the consultation and codesign processes being undertaken for the Independent NDIS Review and other reform projects, and that a plan for forward consultation and codesign is provided.

DSA is interested in understanding the new approach to NDIS reforms which has emerged, which involves limiting exposure drafts of legislation to a small number of organisations and requesting that those organisations sign Non-Disclosure Agreements. DSA believes that the community’s expectations of the use of NDAs should be limited to situations where the risk of disclosure involves criminal proceedings or investigations (therefore, primarily limited to issues around fraud). This new process encourages division in the sector and means that organisations which represent some people in the community have access to different information and resources. This Bill responds to the Independent NDIS Review and could have been appropriately consulted with reference to the relevant recommendations. We would like to see Exposure Drafts of future legislation.

Down Syndrome Australia would like to see Exposure Drafts or be involved in codesign of future legislation pertaining to the NDIS.

It cannot be overemphasised that there is a need to undertake comprehensive and deep codesign with the community on all aspects of the NDIS. The Bill, if passed, will enable significant work to be undertaken under Rules or Ministerial Directives. Our understanding of the process under which these rules or directives are created is that it does not require consultation at the same level as is expected under the UNCRPD, which requires consultation with Disability Representative Organisations. Therefore, there must be a substantial period where unavoidable, legislated codesign occurs. It is imperative that the Government now develops a community approved codesign approach and legislates its use.

Down Syndrome Australia strongly supports the need for a legislated and comprehensive approach to codesign for all delegated aspects of the NDIS.

Access

Access to the NDIS should be straightforward for people with Down Syndrome, and DSA expects, regardless of any changes to the Scheme, that children and babies with a diagnosed chromosomal difference are provided with full Scheme access at or shortly after birth (i.e., at first request). This approach is ideal for ensuring that babies and children receive early intervention and supports as soon as possible. For this reason, DSA is requesting to be involved in the codesign of any Rules for Access.

Down Syndrome Australia requests the opportunity to be involved in the codesign of Rules for Access to the Scheme.

A change in definition which DSA is seeking clarification around is the phrase “likely to benefit the person”, regarding early intervention NDIS supports (insertion of (d) in Clause 25(1)). DSA would like to see Rules

E info@downsyndrome.org.au Down Syndrome P 1300 881 935 Australia required to be developed to support this determination and to be included in codesign on this matter, as this language is open to wide interpretation.

In addition, the change to the definition of NDIS Supports suggests that supports will only be funded for the impairment or impairments for which the participant identifies for access to the Scheme. It is not uncommon for people with Down Syndrome or other chromosomal differences to experience multiple co-occurring conditions, with rates of co-occurring Autism Spectrum Condition of up to 20%, for example. This diagnosis will often occur several years after the diagnosis of Down Syndrome but will have a significant impact on the therapies and supports which will benefit the individual. DSA would like to understand this definition better and be involved in codesign for any Rules or Guidelines associated with this.

Down Syndrome Australia requests the opportunity to be involved in the codesign of Rules or Guidelines for the application of the definition of ‘NDIS Supports’ and the phrase “likely to benefit the person”.

DSA also notes that if a person fails to meet contemporary Scheme access requirements, they can be removed from the Scheme, even if they met access requirements at the time they joined the Scheme. This potentially means that a person can be removed from the Scheme for any reason, including age, disability type/diagnosis, or independently assessed need. DSA does not understand the purpose of this proposed legislative change as there are other mechanisms in place which would achieve the same outcome. Therefore, there is concern that participants will be removed from the Scheme and asked to access only Foundational or community-based disability supports. This has significant implications for people with disability, especially as the ecosystem for Foundational Supports has not yet begun development.

Down Syndrome Australia request further clarification about the need for this proposed change.

Down Syndrome Australia

Needs Assessment The concept of Needs Assessment raises many concerns for NDIS participants. At present, the NDIS processes regularly require participants to have their support or therapeutic needs assessed and reported on, as part of the ongoing plan development and review cycle. Generally, these assessments can be completed by a person known to, or selected by, a person with disability or their supporters. Many people with disability have long and established relationships with qualified health or allied health professionals who complete these assessments, and because of the relationship, will take into account other circumstances in that person’s life, or be able to provide comments which reflect longitudinal change, and assess which aspects of the funded supports or capital investment have provided good outcomes. This should be combined with a strong emphasis on evidence from the person with disability. DSA believes that any new requirements of the NDIS should be person centred and trauma informed, which means that an “independent” or “unknown” assessor should be considered as a last resort and utilised only when a person with disability and their supporters are unable to choose someone to undertake assessments. There should not be a reliance on ‘independent’ or ‘unknown’ assessors who are not familiar with a person’s life and experiences. A situation where all NDIS participants are required by legislation to be assessed with a single tool is concerning as the tool has not been developed and assessed. DSA is not aware of a reason to legislate the use of a tool which has not been codesigned, researched and tested. It is hard to imagine that a single tool could assess the capacity or need for supports for an entire community. Down Syndrome Australia is concerned about the proposed significant reliance on a new, untested process, and would like to understand the purpose of legislating a Needs Assessment, especially prior to the Government notifying the community which recommendations of the Independent NDIS Review it intends to adopt.

Planning DSA requests to know the purpose of including ‘environmental and personal context’ of a participant’s living arrangements in a Plan. Recommendations in the Independent NDIS Review which related to a persons’ environment were generally related to Needs Assessment and Behaviour Support Plans, where it is information which is considered in recommendations for supports, therapies and capital investment. Including this information in an individual’s plan does not appear to be valuable and it is unknown whether a change in a participant’s environmental and personal context might result in a change of circumstances. Down Syndrome Australia is concerned about unintended consequences and administrative burden of this requirement and suggests that further clarity is provided in the legislation.

Flexible Budgets

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Flexible budgets Down Syndrome Australia supports flexible budgets, particularly where there is significant choice and control by participants. It is important that the Guidelines or Rules that surround flexible budgets provide participants with clear definitions and support. DSA also requests that should this matter be legislated, that the NDIA or a delegate organisation is funded to provide education to participants and their supporters, especially to explain the issue of full use of budgets prior to the expiration of a plan. This is an integral part of the process as the proposed legislation also permits the NDIA to ‘raise a debt’ - this should be concerning in light of the ‘Robodebt’ scandal.

             Flexible budgets must come with safeguards for participants.

 "At the moment we are running out of one category of money but have lots in another.
     We need to ask to change the wording on the category we do have

but it feels like we are gaming the system, like we have done something wrong because its low. Flexibility as a standard is very important.“

                                Plan delegate, NSW

The proposed legislation also refers to the NDIA deciding whether a person is “at risk of exploitation”. This process must be codesigned with people with disability, including people who have experienced exploitation or financial abuse, and their advocates.

Down Syndrome Australia supports flexible budgets, and requests that there is substantial investment in education and support for NDIS participants and their supporters.

Definitions

The proposed legislation makes changes to definitions which may have unintended consequences for NDIS participants. These are described in bullet points below:

  • New Section 10(a)(iii) - The definition of NDIS Supports focuses on physical disabilities by defining Assistive Technologies as referring to items that facilitate personal mobility. Assistive Technologies are used to support a number of needs in the community, including communication and independence. The narrow definition provided rules out significant supports which are already in place and would leave NDIS participants without appropriate funding for Assistive Technology which they already use.

Down Syndrome Australia

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  • The definition of NDS Supports will also define how funds can be spent by removing the choice for certain goods and services. Some of these would never have met the criteria for “reasonable and necessary”, e.g., online gambling, however others might be reasonable and necessary for some groups of people, such as whitegoods. If there is a restriction on devices and appliances which make daily living activities achievable for people with Down syndrome or intellectual disability, this might result in excessive expenditure on alternatives such as ready-made meals. This approach is not flexible and may not improve outcomes for people with disability.

  • Reference to ‘evidence-based supports’ might be overly restrictive and encourage people into therapies which use punishment to modify behaviours, i.e., conversion therapies. This language may indicate support for therapies which are evidence-based but are a human rights violation. The Government must invest in increasing the evidence base on a range of therapies and allow people with disability choice in the therapies they access.

  • Reasonable and Necessary supports (Section 34(1)(aa)) - refers to an impairment in the singular. DSA believes this is an error and that it should read “impairment or impairments” as s24 and 25, so as not to restrict supports to only addressing the needs in relation to a singular impairment.

Down Syndrome Australia recommends that the definitions included in the Bill are reconsidered and that feedback from the community is taken into consideration, particularly the definition of ‘NDIS Supports’.

Other

Fraud reduction measures DSA is supportive of measures which reduce the incidence of fraud or exploitation in general. It is unclear why some fraud reduction measures are to be legislated, and others are carried out through everyday procedures.

What’s missing DSA has been a strong advocate for accessible communication especially with regard to Plans, which themselves are often inaccessible to NDIS participants. Legislative change presented an opportunity to legislate for this.

Similarly, there has been a missed opportunity to acknowledge the importance of supported decision making, and legislate for this. Supported decision making would improve the overall experience of reviews and planning in the NDIS process, and ensure that people with disability were able to participate and have their voices heard.

Down Syndrome Australia would be pleased to speak with the Government or the NDIA on these issues.