Australia
Submission to the Joint Standing Committee on the National Disability Insurance Scheme
June 2024
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E info@downsyndrome.org.au Down Syndrome Australia P 1300 881 935 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:
Darryl Steff Chief Executive Officer Down Syndrome Australia Email: Darryl.Steff@downsyndrome.org.au Website: www.downsyndrome.org.au
1 Down Syndrome Australia (2020). Down Syndrome Population Statistics. Retrieved from:
https://www.downsyndrome.org.au/about-down-syndrome/statistics/
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Australia
Submission to Joint Standing Committee on the National Disability Insurance
Scheme
Down Syndrome Australia (DSA) is pleased to provide this submission on the implementation, performance, governance, administration and expenditure of the National Disability Insurance Scheme (NDIS). The NDIS is integral for people with Down Syndrome, with individual budgets defining access to therapies, safety and often access to independent living. For this reason, people with Down Syndrome, their families and supporters and their organisations are generally strong supporters of the Scheme and the potential that it has to change lives. DSA is invested in seeing the best possible NDIS, in which people with Down syndrome can live their fullest and most fulfilling lives.
DSA has consulted with its member organisations and frontline support staff in preparing this submission. DSA takes a trauma informed approach to consulting with people with Down Syndrome and their families about issues which may result in harm to them, and so have utilised information which has been purposefully provided to the organisation and in response to periodic surveys.
Reform processes Individuals and organisations in the disability sector have provided extensive feedback on the NDIS over the past few years and especially in response to the Independent NDIS Review. It is clear that reform is needed to the Scheme to make it more aligned with community standards and in meeting the needs of people with disability. Without a Commonwealth response to the recommendations of the Independent NDIS Review, the disability sector is again raising the same issues in other forums such as these Committees. This is not a productive use of time. Now is the time to co-produce and co-design solutions and develop the legislative and non-legislative responses which are appropriate, considered and occur in a chronology which provides participants and their supporters with consistency and care.
At the time of writing, the community is awaiting the Commonwealth Government’s response to the Independent NDIS Review. In the interim, the Government has introduced legislation which has caused distress and confusion in the community, as there is not a clear or urgent need for many parts of this legislation and its connection to the Independent NDIS Review is not strong. The approach of introducing legislation in this way is not an approach which is useful or conducive to creating trust in the Scheme. Furthermore, the legislation does not address many issues with the Scheme such as those described below.
DSA is a national systemic advocacy organisation and has responsibilities on a number of working groups focussing on the functioning and reform to the NDIS. DSA receives significant communication on the Scheme and reform projects. Despite this, DSA lacks a single communication which outlines the reform work which is proposed, being undertaken, and the chronology of this work. This would be a useful and informative document.
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Australia DSA would like the opportunity to communicate about the NDIS and create expectations about what is happening with the Scheme with our members and with the community. Therefore, DSA would like to see a clear, chronological process developed for reform and improvements to legislated and non-legislated processes.
Understanding of disability Participants have found persistently that staff across many Local Area Coordinators and the NDIA do not have a basic understanding of Down syndrome and the impacts that it has on an individual’s life. While it is understandable that staff might not have deep understanding of each and every disability, it would be advantageous to have some insight into the impact of Down syndrome.
Even when staff understand that intellectual disability forms part of the syndrome, there is little to no understanding of the physical, communication, developmental or medical disabilities which may accompany Down syndrome. Significantly, there are many co-occurring conditions which require support under the NDIS, such as hearing loss, autism spectrum disorder and ADHD. The presentation of these cannot often be functionally separated from the presentation of Down syndrome.
The impact of this poor or patchy knowledge base is that interactions with the NDIA and LACs can be repetitive, traumatising and/or wasteful of time and impacts at all stages of the NDIS process, from access, budgets and plan reviews.
DSA would like a commitment that staff at the NDIA and Local Area Coordinators are supported to develop expertise across different disabilities, learn about trauma informed approaches to communication, and be afforded the time to develop relationships with participants.
Access decisions It is understood by DSA that adults with Down syndrome are generally now NDIS participants and that any adult who is not has made a purposeful decision to access community supports outside the Scheme. Therefore, access to the NDIS primarily affects babies and children with Down Syndrome, who are currently afforded direct access to the Scheme on the Early Childhood by an access list. Babies and children with Down syndrome should be able to apply for and be accepted to the Scheme automatically and at first request (with support from hospitals and maternal health practitioners), and without waiting for a developmental delay to be present as we hear is sometimes the experience.
There is often a statistical anomaly where fewer than 100% of people with Down syndrome who apply to the Scheme are accepted. While this might be for reasons other than disability requirements (i.e., residential requirements), DSA would like to see that those affected families and guardians are referred to Down Syndrome Australia for support, whether this is carried out centrally or directed to State and Territory organisations. It is important for DSA to understand why babies and children with Down syndrome might not receive access to the Scheme on first request and support those families.
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Australia Access to the NDIS is an area in which reform has been proposed by both the Independent NDIS Review and by proposed legislation introduced by the Government. There is a strong potential for access rules to change, and DSA would like to be included in that co-design.
DSA would like to have any person with Down syndrome who is not approved for the NDIS to be referred back to this organisation for support.
DSA requests the opportunity to be involved in any changes or codesign of Rules for Access to the Scheme.
Rollover to PACE Over the past few months, NDIS has implemented a new system for some participants. Some NDIS participants and their nominees were unaware of the changes until notified by a Local Area Coordinator. When asked where they could find out more about the system, they were referred to information sessions about access to the Scheme – events which didn’t make specific reference to PACE but also were reportedly not advertised to longer term existing participants.
Most participants and nominees are willing to attend information sessions about changes to the Scheme which affect them directly.
DSA requests that any changes to the Scheme which affect a participant and their nominees are well advertised and that information is communicated in an accessible way.
Increased reliance on reviews and AAT DSA has been made aware that for some Scheme participants there is an increase in the apparent requirement to make requests for reviews, or to attend the AAT for an outcome. While it is important that Scheme participants are utilising their funds for reasonable and necessary supports, for some people the response from NDIS when requesting funding for supports has been increasingly adversarial. This has been accompanied by a rise in anxiety and administrative burden, and requests for complex reports from allied health specialists. Anecdotally, people with Down syndrome and their supporters have found that once there has been a review of the information provided to the NDIS, these funds have been provided or therapies and services approved which indicates the need for improved planning in the initial stages.
This change has also caused an increase in the need for individual advocacy by organisations for whom this is not their primary role. There is a flow on affect for the ability of these organisations to provide other services and supports in the community, with a small number of staff instead providing support and advocacy on individual NDIS cases.
DSA recommends that the NDIA investigate the cause of the increase in Reviews and applications to the AAT, and look to solutions which support participants and their needs.
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Australia Delays Some participants are experiencing delays in the processes and systems of the NDIS, especially plan reviews and plan approvals. There has also been delays in payment of invoices. These delays impact the lives of people with disability significantly, either by causing anxiety about outcomes and the potential for withdrawal of support, or in the actual change to funded supports, for example when a plan is rolled over despite a change of circumstance that coincided with plan review.
DSA understands that NDIA is aware of delays in the systems and processes but would like to see continuing strong effort to reduce any identified delay in NDIA/LAC service provision.
Restrictive practice DSA takes the reduction and elimination of restrictive practices very seriously. There are tools recommended by allied health practitioners or which resolve medical issues, which are specifically designed for safety or eating which are related to disability which should not be complicated to fund. Some participants have informed DSA member organisations that they have been informed that these tools won’t be funded by the NDIS and are a ‘parental responsibility’, such as feeding chairs or specialised car seats.
DSA requests that policies and rules around funding decisions for specialised equipment is codesigned and consistent and takes into account the needs of people with disability and their supporters.
Accessible information and supported decision making It is important that participants and their nominees are able to understand the purpose, processes and documents which are developed by the NDIA and by Local Area Coordinators. It remains the situation that many participants are unable to access their plans, guides or supporting information about service provision, for example. This is exacerbated by the digital divide, where people with disability might have limited access to suitable devices, limited access to the internet, or still be developing the skills to manage online administrative and information gathering.
Despite multiple commitments by the Commonwealth, there has been no significant action on accessible information or incorporating requirements for supported decision making. The NDIA has a supported decision making policy but regrettably, there is little evidence of this being used in practice. Organisations in the community such as DROs regularly have to translate information from the NDIA and other agencies into Easy Read or plain English so it is accessible to our members. This information should be available to the whole community and provided in multiple formats by all Government agencies as a matter of course.
The Independent NDIS Review made the following recommendation about accessible communication and supported decision making, and DSA strongly supports the implementation of the recommendation, with urgency.
Recommendation 5: Provide better support for people with disability to make decisions about their lives
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Australia
DSA recommends that the Commonwealth Government acts quickly and decisively on Recommendation 5 of the Independent NDIS Review and supports those actions towards accessible information and supported decision making in the Australian Disability Strategy 2021-2031 in co-design with the disability sector.
Thin Markets Thin markets have been a topic of much conversation since the introduction of the NDIS. This is a persistent issue. While DSA realises that there is work being undertaken on this issue, this remains a significant barrier for people with Down syndrome in some locations who are unable to access supports which don’t exist for them.
DSA encourages the Commonwealth Government to continue work on the issue of thin markets and access to appropriate and timely services.
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DSA appreciates the Committee’s time and its interest in the day-to-day performance of the NDIS. By providing a submission for this Quarterly update, DSA hopes that a result of this investigative report will be a comprehensive response which outlines the changes and processes of the NDIA into the short- and long- term futures. A piecemeal approach is not effective in managing a large-scale Scheme. We welcome the opportunity to discuss any of the above with the Committee.
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