NDIA Accountability Project

Impact of NDIS Amendment on person with Prader-Willi Syndrome, autism, and intellectual disability

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Submission re: ’National Disability Insurance Scheme Amendment (Getting the NDIS Back

on Track No. 1) Bill 2024’

As a person with lived experience of disability, I urge the Committee to reject the Bill in its current form. I have many concerns about the Bill. Some echo those identified by others, and the remainder are based on the direct experience of myself and a family member who has a cognitive impairment (amongst other disabilities). I write from the perspective of a family member and active supporter of someone who has a variety of ‘thinking problems’. There are gaps and ambiguities in the Bill which exacerbate the existing problems of the NDIS for people with these cognitive limitations. The draft Bill, as it is, places my family member at greater risk of a decline in wellbeing, safety and ability to have her needs and goals met.

Context

The person I know has Prader-Willi Syndrome, a genetic cause. It is a complex, multisystem, multistage disability. She also has a mental illness and is on the autism spectrum. Particularly disabling is the accompanying executive brain dysfunction and intellectual disability. Such cognitive impairments adversely impact her ability to think, learn, remember, use judgement, and make decisions. There is also memory loss and trouble with concentrating, completing tasks, understanding, remembering, following instructions, imulsivity and solving problems.

She lives in NDIS Specialist Disability Accommodation (SDA), with Supported Independent Living (SIL) services. She has other supports as well. To ensure value for money, all these providers (and their costs) need to be selected and managed with vigilance, diligence, knowledge and skill. Clearly, a person with the cognitive impairments noted above will not be able to do that. The NDIS is difficult enough to deal with even for those without cognitive impairments. Someone has to help her. And when informal support is not available, there needs to be a paid role with responsibility for effective holistic service delivery where ‘the buck stops here’.

The NDIS has failed to recognize that the needs of people with cognitive impairments and challenging behaviours are qualitatively different from those with physical or sensory impairments. The support needed to address invisible ‘thinking’ disabilities is a more sophisticated, dedicated and independent service, like a case worker. When left without independent support for the cognitive impairment, it has been demonstrated that there is a high likelihood of poor quality and unsafe services, sharp practices and outright fraud against such Participants.

There is too much of a neoliberalist approach in the NDIS. For people with significant cognitive impairments, the concept of the individual having the capacity to effectively ‘choose and control’ any and all aspects of their NDIS journey is utterly flawed. Such Participants cannot enact the ‘market-forces’ practices that successful NDIS Plan implementation is predicated on. Their ability to self-direct providers is severely limited. And so money is easily wasted, due to a lack of detailed monitoring and oversight of the NDIS Plan, on a systemic basis.

Issues with the Bill

  • The Bill should come after a Government response to the NDIS Royal Commission. That way, the Bill could be more realistic in addressing the remaining ‘gaps’.

  • There is not enough detail in the Bill (or associated regulatory documents).

  • Too many operational intentions are proposed to be in the Rules. This is too risky being subject to change and variable interpretation

  • The Bill must not deliver a situation where only one of the individual’s disabilities receives support (primary). A person who has multiple disabilities, especially cognitive, finds that there is an interplay between each of the disabilities. If one is not supported properly, it can easily have an exacerbating effect on another of the disabilities. This includes an escalation of challenging behaviours. Ultimately this decline costs more to the NDIS.

  • The NDIA does not communicate effectively with Participants. This includes upon entry and at subsequent reviews. Reasons for decisions are vague and inexplicable. Often the NDIA had seen incorrect information or an absence and does not give an opportunity for clarification. The Planner is not available for clarification. The Bill must not reduce a Participant’s right of appeal through each potential avenue.

  • Each person with an intellectual disability (or other cognitive impairment) will have different functional impairments. This will be a combination of their physiological self, upbringing and current environmental/life context. Therefore, the Bill must not implement computer generated assessments based on algorithms, which are not suitable for people with cognitive impairments. They need assessment by a human Planner with a high level of expertise and take life context into account too.

  • The Bill is unclear about how it will involve people with significant cognitive impairments in co-design. There is not enough transparency on how independent decision making supports will be available to people with cognitive impairments during co-design.

  • The Bill seems to threaten people if they spend their budget incorrectly. This is unfair in such a complex system and without recourse to immediate guidance and early warnings. People with cognitive impairments could easily be over-represented in allegations of mis-spending. But it could be due to a lack of understanding and availability of independent decision-making supports.

  • The Bill does not address Recommendation 5 of the NDIS Review about how people with cognitive impairments need lifelong, independent decision-making supports.

  • The Bill must not assume that the NDIA understands what ‘relevant information’ is when assessing a Participant. The Participant must be allowed to supply, and have considered, information that they think is relevant.

Section 10

  • Section 10 of the Bill does not adequately address the problem of the States and Territories avoiding their responsibilities for contributing to the support of disabled individuals. It should be rewritten.

Revocation

  • Revocation is not acceptable for people with cognitive impairments or severe communication impairments, being the most vulnerable cohorts in the NDIS. There must never be another case of death due to the NDIS system allowing invisibility and isolation of a Participant like Anne-Marie Smith or getting no services at all, even though the person is entitled. Often the cognitively disabled person will not be able to understand what is happening with NDIA/S communications, or what the consequences will be of inaction, or under-action. They need to have a case-worker to support them, who knows the minutiae of their use of their NDIS Plan. The Support Coordinator (or navigator) does not have the mandate in their role to achieve the granularity of monitoring and supervision of service agreement usage that is required for good outcomes. Hence a case-worker role needs to be introduced for the most vulnerable.

Oversight and safeguards

  • Oversight and safeguards to protect people with cognitive impairments (or severe communication disability) from abuse, neglect and financial manipulation are deficient in the current NDIS arrangements. The Bill does nothing to make protections for these cohorts better and actually effective.

Wide variety of supports needed

  • People with cognitive impairments often need a wide variety of support, which might include support for challenging behaviours. It means support to manage health conditions which they cannot do safely themselves due to the cognitive impairment. They also need non-face-to-face administrative support such as managing their personal budget or care team meetings amongst their providers. The Bill lacks clarity on a stable definition of NDIS supports, which might mean that this cohort is put at risk of losing crucial supports. As has been seen in the current arrangements, some Participants miss out on services whilst the service systems bicker amongst each other about who is financially responsible. This pattern is at risk of continuing under the Bill.

Fragmentation issues

  • The NDIS system is already too fragmented. Each support is prone to acting in ‘a silo’, where no particular role is responsible for the Participant’s overall outcomes, safety and wellbeing. The Bill does not seem to address the problems that service fragmentation cause Participants with cognitive impairments and their informal supports who, as a result, wear an unsustainable administrative burden. The burden is both in the repeated assessments for a life-long genetic condition, as well as the day to day, every day support given, to manage the service providers and their Agreements.

Risks posed by the bill proceeding in its current form

  • I expect there are other risks posed to my family member if the Bill proceeds in its current form. But I lack the ability to interpret the Bill and its implications in full.

Suggested solutions

  • Fraud and elimination of systemic sharp practices by providers have to be the focus of cost saving measures. The NDIA and the Quality and Safeguards Commission

(plus DSS, ATO and others) need to share data about ‘outlier’ providers. And about providers who have had complaints made against them. NDIA and Q&SC need to be proactive, analyse big data and deliver meaningful penalties to providers. Examples of bad performance and outcomes of penalties must be demonstrated to the public. People with cognitive impairments (arguably with more of the bigger NDIS Plans) cannot be the ‘police’ and identify the problem providers in the system.

  • The NDIA needs to differentiate between Participants that have a significant cognitive impaired and the rest. People with significant cognitive impairments, who have a limited capacity for self-expressing needs, have to have independent support for decision making paid for in their NDIS Plan. A case-worker role needs to exist for these people within the NDIS.

  • People with significant cognitive impairments need ongoing support for the administrative tasks that abound in the NDIS. They need a case-worker to support them to ensure they have actually received the contracted service. Each Service Agreement needs ongoing monitoring for delivery of services against KPIs and correct invoices. Faults and gaps with both these dimensions abound in the current NDIS. A “specific person with overall responsibility” is needed in the NDIS, as per the recommendation from the AM Smith investigation.

  • The NDIA and Q&SC need to be adequately resourced with skillful and knowledgeable staff. This would help to alleviate the administrative mess and time delays that occur in both organisations. The time wasted in sorting out the consequences of missing documents and untimely action is expensive in itself. It leads to mistrust by system users.

  • Advocacy services must be available for in-person attention for people with cognitive impairments until a particular issue has been resolved and a case-worker appointed.

  • The likelihood of misunderstandings occurring between this cohort of participants and the NDIA, the AAT, the Q&SC and others is high. Therefore, the communication approach with this cohort has to be personalized. The NDIA must allow more time for this. The NDIA must not suspend or revoke payments or access unless there has been personal contact with that Participant and their independent decision-making support person. The onus is on the NDIA to ensure that the Participant and their support person need to understand why, before action is taken.

  • Assessments: The NDIA must not rely just on ‘assessment tools’ for this cohort. The Participant must be able to supply their own reports or replacement assessments, which must be considered. The NDIA must confirm that this was done with the support of an independent person (Nominee, advocate, case-worker or similar), The Participant must be able to see what information the NDIA used and be provided with the rationale for the decision, in a meaningful, plain English way. Otherwise, the risk of a ‘robo-debt’ event occurring is high and the outcome for the Participant could easily be unfair and cause them harm.

  • The AAT must be allowed to review decisions for people who are cognitively impaired, given the higher likelihood of flaws in their assessment process.

Service Agreements

  • Service Agreements, especially for SIL supports in SDA’s must be much more detailed. They must describe what will actually be delivered within each ‘daily living’ item number. The Participant must be in a position where they can measure the service delivery and hold the provider accountable.

  • Participants must have input (with their independent support) into how the Plan Budget will be categorized and paid. Flexibility must be available. Template Plans are not acceptable.

  • Also, Support Coordinators. The specialized experts must be retained in the NDIS. The skill level of current Support Coordinators varies greatly. Some are knowledgeable, skillful, committed and professional. Some are used to supporting complex Participants with cognitive impairments and do it very well. But some are very ineffective, of dubious value for the money. As Nominee, I know more about the NDIS and community options than do the dubious ones. Any changes to Support Coordinator arrangements must not result in the excellent, niche businesses being jeopardized in the marketplace. The best Coordinators identify providers that are under-performing and take action, thereby adding value to both Participant outcomes and the NDIS as a whole. Many other Coordinators deliver a poor quality service and operate in a conflict-of-interest environment that they have no qualms about. Do not homogenise the Support Coordinator role to a generic service. The Participants with sensory and physical disabilities may best be assigned to ‘Navigators’, whilst the most vulnerable, those who have cognitive or severe communication disabilities should get access to much more expert Support Coordinators.

  • The NDIA needs to recognize that some people with cognitive impairments, especially if there is a genetic basis, will reach a plateau of functioning. They may never improve their capacity in daily living skills to a degree that reduces their dependence on NDIS supports, or be able to seek or work in paid employment. In fact, they may enjoy attendance at a centre-based day program. There they meet peers and friends and find purpose. The Bill must not preclude the viability of these day services as an ongoing option for Participants.

  • The States and Territories must resume their foundational supports, such as mental illness drop-in centres and disability support within the education system.

Conclusion

I have presented my concerns about the Bill and the implications for people with cognitive impairments. I have given suggestions for the way the NDIA treats people with cognitive impairments such as intellectual disability and executive brain dysfunction. My submission is based on years of experience providing informal support to my family member. I have firsthand examples of many things that go wrong when trying to deal with the NDIS and all it’s dimensions. It is a nightmare of administration, uncertainty, moving goal-posts, ineptitude and provider incompetence. The NDIA and the NDIS Commission need to do better. This Bill should be the opportunity.