Down Syndrome Australia Submission
Proposed Legislative Changes to NDIS
October 2021
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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.
Down Syndrome Australia is making this submission on behalf of its members. Down Syndrome Australia and its members 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 some 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:
Dr Ellen Skladzien
Chief Executive Officer
Down Syndrome Australia
Email: Ellen.skladzien@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/ 2
Submission: Proposed Legislative Changes to NDIS
Down Syndrome Australia (DSA) welcomes the opportunity to provide input into the proposed legislative changes to the NDIS. We note with disappointment that the Disability Sector’s request for additional time to consider the legislation was denied. DSA is a member of the Australian Federation of Disability Organisations (AFDO) and endorses their submission and recommendations.
Our response focuses on key issues for people with Down syndrome and their families. We would like to acknowledge that information published by the Public Interest Advocacy Centre, as well as briefings by Department of Social Services, were used to inform our understanding of the proposed changes to the legislation.
DSA supports several of the changes in the legislation which we believe will be beneficial for NDIS participants including:
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Legislation of the Participant Service Guarantee including timeframes around access and review and required reporting against these timeframes. Including this in the legislation provides participants with further certainty about the NDIA delivering on the Participant Service Guarantee. It also guarantees a level of accountability and transparency regarding the NDIA performance.
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Changes to the NDIS principles including adding co-design with people with a disability and using more appropriate language.
Areas of Concern
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Plan variation without consultation We understand that the proposal in section 47A to allow plans to be varied without ‘reassessment’ is designed to enable NDIA to make adjustments, corrections or changes when requested by a participant. We are concerned, however, that this proposal also provides the CEO with the power to vary plans without any consultation with the participant. It is unclear why this level of additional power by the CEO is required or what benefit this will bring to NDIS participants. For this reason, we request that this section be amended appropriately to ensure that participants are always consulted and informed about any proposed changes to their NDIS Plan. If a variation or review is going to occur it is essential that the participants have time to respond and to gather any reports they require to inform the changes.
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Changes to plan management DSA has significant concerns about the proposed amendments to section 43 and 44 of the ACT and the Plan Management Rules which would require a risk management process for participants who are ‘plan managed’. This means that participants would face the same requirements to be plan managed as they face for self-management. Participants who were deemed to be at ‘higher risk’ would no longer have the option to use an unregistered provider. This is problematic as it significantly reduces choice and control for a significant number of participants. As of Q4 of the NDIS report, 49 per cent of participants use a plan
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manager. It should be noted that this approach to management has increased significantly over the last two years. Currently only 20 per cent of participants choose to be Agency-Managed.
The proposed amendment will have a significant impact on nearly half of the scheme participants. It is unclear how many of these participants would have to move to Agency-Managed supports, limiting their choice and control. Some participants have indicated that the use of unregistered providers is essential to having their support needs met and would be significantly and adversely impacted if they were to be forced to be plan managed by the NDIA requiring them to only use NDIS registered providers.
We have heard anecdotally that the current approach to risk assessment for self-managed participants is quite conservative and depending on how respondents choose to answer specific questions about their confidence in managing funds, this can make an impact on the risk that is assigned to them.
The use of a plan manager versus being self-managed is a different proposition in terms of the requirements for managing finances, keeping records etc. When a participant’s supports are plan managed, the plan manager pays any organisation providing support as part of the participant’s approved plan. The plan manger must be a registered NDIS provider and meet the NDIS quality and safety standards. In contrast, self-managers are responsible for paying providers directly and retaining appropriate records.
It is inappropriate to use the same risk approach across these two very different management options. Under current NDIS operating guidelines it specifies that the participants financial history should have no bearing on whether they can have a plan manager appointed. This is an appropriate setting given that the plan manager is dealing with all the payments and record keeping on behalf of the participant.
We recommend that this change to the legislation is not included as it has potential negative impacts on a significant number of NDIS participants.
- Proposed changes to payments of support The proposed legislation includes a change to how supports are paid. DSS has indicated that the changes are intended to allow for a tap-and-go approach to payments for self-managed participants. This is a welcome change and will assist participants who currently face being out of pocket for costs until they are reimbursed by the NDIA. For some participants being self-managed is impossible because of this requirement to make upfront payments and due to their financial constraints, they are unable to be out of pocket until they are reimbursed.
It is essential that this new approach to payment is optional and does not remove the current approach to payments. This is important particularly if some unregistered providers are not willing or able to utilise the new system, or if participants are unable to use the new technology. There is also concern amongst participants that this forces them to share that they are NDIS participants which can mean that providers charge at a higher rate.
DSA requests that the drafting of this proposed change is updated to clarify that this change is not intended to limit participants from using the current approach to payments where they can pay a provider directly.
- Reasons for decisions 4
The proposed legislation includes a change to allow participants to request reasons for decisions made by the agency prior to any review. This is an important change that provides participants the opportunity to get information about why decisions have been made.
Some participants may not be aware that they are able to make this request or may find that making the request is too difficult. DSA requests that the wording of the proposed legislation be amended so that participants be provided with information about reasons for decision automatically rather than on request. This means that all participants can have a better understanding of how the NDIS is making decisions and provides greater transparency.
Summary
DSA is supportive of most of the proposed changes to the legislation. We have identified a few areas where further clarification is required. Our most significant concern in the proposed changes is in relation to the risk-assessment requirement for plan management.
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