NDIA Accountability Project

Supplementary submission to the NDIS Amendment (Participant Service Guarantee & Other Measures) Bill 2021

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Supplementary submission to the National

Disability Insurance Scheme Amendment

(Participant Service Guarantee and Other

Measures) Bill 2021

November 2021

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The Alliance makes this supplementary submission to provide commentary on the proposed Becoming a Participant Rules, and additional detail on the amendments to S29(1)(B) and S31(k) that we recommended in our first submission. This feedback was previously provided to the consultation on the exposure draft of the Bill. We believe it has particular relevance to this inquiry.

Consistent with the Alliance’s well known position that the NDIS must develop collaborative working arrangements with other service systems, we also propose that an additional set of NDIS Rules be created to govern the NDIS’ interface arrangements with these service systems. The Alliance believes the continued failure of the NDIA and the Department of Social Services to develop a sophisticated set of interface agreements with other service programs means there is little option but to propose this failure be addressed in a more structured way.

As we said in our first submission, the proposed Bill has limited ambition and further entrenches the NDIS as a silo, making the scheme’s ability to collaborate with other service systems that much more difficult. Its proactive engagement with other service systems is a noted reform for the development of the NDIS and must be addressed as a priority.

The Alliance notes that the wording of S47A has been altered since the exposure draft was released to include the phrase “each variation must be prepared with the participant’. This does not represent a significant change in intent.

The Alliance is aware of many situations where the scheme denies supports recommended by allied health evidence and participants’ expressed wishes, so including these new words in the Bill does not provide assurance that the participant’s views will always be given the weight that these words may want to imply. Empowering the CEO to initiate reviews that enable and legitimise this kind of practice does not signal an improvement of scheme operation, but simply changes the timing. It does not address the fundamental issues around scheme practice, decision making and communication that is needed.

We recognise that there may be times where a plan needs to be varied for administrative reasons. However, if this is a power that is needed, then it must be expressly stated. The insecurity that a power like this could generate in participants is profound and makes plans vulnerable to unpredictable changes.

An underlying presumption of this amendment is that participants are not only prepared for change and understand the reason and the context for this plan variation, but also have the capacity to participate in a scheme initiated review.

Our extensive experience is that significant unmet need for support in decision making exists for participants engaging with the NDIS; and that without this dedicated supported decision making assistance, the process proposed in the legislative changes will ensure this is tokenistic at best.

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Because it requires a core commitment to developing collaborative lifetime relationships with participants, running a lifetime support scheme is significantly different to running a government department or a standard funding program. However, the NDIA is yet to realise this commitment through its current planning and staffing model. Rather than creating more power in the agency, a major shift in focus toward participant relationships is needed.

Changes to the Becoming a Participant Rule The Alliance would have preferred to see this rule be part of the Bill. In any case, we see this proposed change as a deliberate attempt to unfairly limit scheme access and strongly reject it. The new wording in rule 7 (2) states

(2) The impairment may be considered permanent, or likely to be permanent, only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment.

In this vein, the new wording in rule 9 2 continues

(b) there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to lead to the impairment or impairments no longer having that result

The contrived ignorance of the complex interaction of health conditions, disability and functional impairment that is evident here, implies an unrealistic expectation that some disability can be ‘fixed’. This artificial separation of health and disability is extremely poor policy. While we recognise that a determination of permanent disability is required, we believe that the current Rules are more than adequate to enable their exercise with rigour and pragmatism.

This major departure from the current access Rules is therefore inappropriate and unwarranted.

We have further concerns with the vagueness of the terms ‘known’, ‘appropriate’ and ‘other’ as they are applied to treatments. Some of these may well fall into ‘reasonable and necessary’ in the NDIS legislation. But based on the imperatives of instructions to NDIS staff making access decisions, there is far too much room here for poorly informed administrative decisions to override clinical evidence.

These additional tests also ignore the risks of proposing medical treatment that may impact the interaction between a person’s health condition and their disability such that they are either indistinguishable, or the causation of the health condition arising from the disability is misunderstood.

Health conditions with disabling impacts severe enough to warrant an application to the NDIS, rarely exist as simple presentations. Co-morbidities may combine to complicate the separation of a disability from a health condition, making such an endeavour pointless.

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One area where this proposal will create significant difficulty is in the area of brain injury rehabilitation, where clinical and disability services are required to be delivered together, and clinical input tapers over time. Trying to decide on a particular point where a clinical service leads to total recovery from the impairment/injury is simply not possible.

It is unclear whether this additional test in the rules expects rehabilitation to be completed before scheme access will be granted. This would be unrealistic for many people going through rehabilitation or living with a health condition as well as their disability.

ABI rehabilitation, for example, takes place over many years and cannot be characterised as a pathway where a handover from health services to disability services occurs at a particular point in time. This is true of many disability types, but ABI has closely intertwined health and disability impacts. For many people, their ABI leads to secondary health risks that need clinical management and particularly skilled interventions by disability support services. Dr Heidi Meunchberger describes the complexity of these arrangements when she says

Rehabilitation, in its optimal state, represents one of the most complex and integrated forms of health care because it involves the timely delivery of multiple services via multiple disciplines in different care settings over a lengthy period of time.1

Further, in an international review of traumatic brain injury (TBI) rehabilitation models, Costa and Gibson made the following general findings that support an integrated approach to ABI rehabilitation:

  • Rehabilitation models of care are underpinned by flexible, multidisciplinary and evidence-based coordinated rehabilitation, delivered continuously across the rehabilitation journey and which engages patients.
  • Effective rehabilitation interventions are commenced early, deliver continuous tailored care of the right intensity.
  • Comprehensive multidisciplinary outpatient rehabilitation is effective for clients with moderate to severe TBI.
  • Home-based post-acute rehabilitation may be as effective as outpatient or inpatient rehabilitation for some clients with moderate to severe TBI.2

1 Muenchberger, H., Kendall, E., & Collings, C. (2011). “Beyond Crisis Care in Brain Injury Rehabilitation in Australia: A Conversation Worth Having.” Journal of Primary Care & Community Health, 2(1): 60-64. 2 Costa, B., & Gibson, K. (2017) Rehabilitation models: A scoping review. Alternative rehabilitation models and frameworks for clients with traumatic brain injury and orthopaedic trauma. Melbourne: Institute for Safety, Compensation and Recovery Research: 5.

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People recovering from a stroke already have particular difficulty with scheme access, as the scheme is often unwilling to grant access because it thinks there may be a chance of recovery within a 12 month period. The Alliance has worked with many people whose impairment means they cannot leave hospital without disability support. Yet they are refused access to disability support because the agency takes the view that it should wait and ‘see’ if any improvement in capacity occurs.

This Russian roulette approach to rehabilitation is inconsistent with the COAG’s Applied Principles that list rehabilitation as the only service area that is a shared responsibility between the NDIS and health systems. Yet no progress has been made towards defining or implementing this shared responsibility by either the scheme or the Disability Reform Council (DRC).

These proposed rule changes will, however, place a structural barrier to progressing collaboration on rehabilitation as it sets the NDIS and health systems up in competition with each other.

Despite collaboration by the NDIS with health systems being essential for comprehensive participant support and good risk management, these proposed changes actually make such cooperation structurally more difficult. As we indicate later in this submission, there is an imperative for the NDIS to work “smarter” at its boundaries, and in this regard, none is more critical than its intersection with health systems.

Rather than putting up ever higher and more unreasonable barriers to scheme entry for people with health conditions, the focus for the NDIS should instead be on cost and risk sharing with health systems for this group.

Health services and disability services are not substitutable, and if a person has a need for integrated health and disability services, they require both. Trying to force health services to supply disability services or trying to make disability services do the job of health services does not result in good outcomes. Worse still, it risks transferring the burden of support to the individual.

For a narrow range of people, this is what this rule change will result in, and for this reason, The Alliance strongly recommends it be removed.

There is merit in the government looking more closely at early intervention rules. In this regard, the NDIS can learn a great deal from the provisions in State and Territory lifetime support schemes that describe interim participants. This may be a better way of dealing with people who require disability services because their condition is disabling, but may not meet the permanence test at the point of access request.

Amendments to the NDIS Act left out of the Amendment Bill

Amendment to s31(k)

In order to mandate service coordination that works across both disability and mainstream services and not only across disability supports, it is important to amend S31(k). The limitation of the current clause is that it can only include coordination where ‘there is more than one disability service provider.’

The current wording of S31(k) prevents the NDIS collaborating with other service systems and undertaking co-funding and coordination of support plans for participants requiring concurrent and linked services from different programs.

As an NDIS service type, the poor performance of support coordination is due to many factors and we hope the scheme is evaluating these. The scheme has an expectation that support coordinators can undertake service coordination across service systems as needed. Yet the NDIA has not provided them with the capacity, the funding or the skills to do so.

This has not only limited their effectiveness, but left coordinators without any mandate under the NDIS Act to undertake coordination of services other than an NDIS funded disability service. They have also not had any policy assistance from the NDIA in negotiating coordination arrangements with other sectors.

S31(k) was one of the clauses that was written prior to the scheme’s launch. Eight years of scheme activity and experience later, this clearly needs to be rectified.

From a risk management perspective, it is imperative that the NDIS maintain control of this service coordination where other service systems are concerned. Paying for coordination of non-NDIS services for a participant should not be seen as unnecessary spending (as scheme administrators may be inclined to do).

Instead, it is an investment in ensuring participants receive well coordinated services from the programs they need; and that the risk of service gaps or cost shifting can be managed at the participant and service level. Effective coordination of this nature can deliver benefits to both participants and the scheme.

The Alliance recommends S31(k) be amended to read:

provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability and other services where there these services are provided from more than one service system or provider.

Repeal Section 29 1(b) – a discriminatory provision

S29 1 (b) of the Act strips NDIS participants of their NDIS eligibility if they enter residential aged care (RAC) for the first time after turning 65 years of age. Under S29 ‘When a person ceases to be a participant’, the Act presently states:

(1) A person ceases to be a participant in the National Disability Insurance Scheme launch when: (a) the person dies; or (b) the person enters a residential care service on a permanent basis, or starts being provided with home care on a permanent basis, and this first occurs only after the person turns 65 years of age

This provision is both discriminatory and illogical. It leaves a person with a disability without the essential NDIS support they would have been entitled to receive had they lived in any other place in the community.

The Alliance is aware of a number of people who have lost their NDIS eligibility through S29 1(b), and the consequences of this unforeseen action have been devastating for them and for their families. In these circumstances, a placement in residential aged care has been because of a sudden change of circumstances or a rushed discharge from a public hospital where the social workers and the aged care providers were not aware of the disastrous consequences for NDIS participants over the age of 65.

The aged care service system was never meant to accommodate residents with disability. As a result, there are significant differences in what the aged care system and the NDIS can provide for people with disability, be that in the community or in residential aged care.

As one example, residential aged care has no mandated staffing levels and with resident-to-staff ratios commonly around 7:1 or greater, frontline staff and management are time and resource poor and unable to provide the suite of supports people with disability and complex needs require. Being stripped of their NDIS services is catastrophic for these participants. It not only greatly reduces the support available to them but adversely impacts their health and well being. People with disability over the age of 65 needing customised equipment, community access and therapy support cannot access these types of support in aged care.

The Alliance is firmly of the view that NDIS participants who enter a residential aged care service for the first time after they turn 65 must retain their NDIS eligibility.

In examining the issue of people with disability in aged care, the Royal Commission into Aged Care Safety and Quality made the recommendation that:

By 1 July 2024, every person receiving aged care who is living with disability, regardless of when acquired, should receive through the aged care program daily living supports and outcomes (including assistive technologies, aids and equipment) equivalent to those that would be available under the National

Disability Insurance Scheme to a person under the age of 65 years with the same

or substantially similar conditions.

In making this recommendation, the Royal Commission determined that it was important to address the gap in support available for people with disability in aged care compared to that available through the NDIS. It is important that, at the very least, the government remove section 29 1(b) as the first step towards considered action on this recommendation. A failure to do so will not only make this problem worse, but will be a direct snub to the detailed work undertaken by the Aged Care Royal Commission.

Stripping disabled people of their NDIS entitlements and forcing them into a system that does not cater for their needs is not only discriminatory, but directly contravenes the UN Convention on the Rights of Persons with Disabilities (CRPD) at both the Preamble (p)4, Article 8 (b)5 and Article 256, Health, for example. Australia is a signatory to the CRPD.

Significantly, Section 29 1(b) is another clause that was written before the scheme had any real world experience and was written with an eye on service duplication.

As the NDIS is now the sole funder of its participants in aged care via the reimbursement of aged care costs to the Australian Department of Health, the question of duplication is not the issue it was in 2013.

Because this clause is only applicable to a very small number of participants, the cost impact of repealing it will be minimal for the scheme. The Alliance urges the repeal of this clause in the strongest possible terms.

An additional set of NDIS Rules – NDIS and interaction with other service systems The Alliance believes the continued failure of the NDIA and the Department of Social Services to develop a sophisticated set of scheme interface agreements with other service systems, means that the only option is to define these critically important arrangements via formal address in this legislative package. A new set of rules are required to provide guidance and discipline for the NDIS to work collaboratively with other service systems.

We recommend the new rules we are proposing would replace the COAG Principles (APTOS)7.

These new rules must encompass (but are not limited to) the following areas:

  • Sharing of responsibility where more than one service system is supporting a participant, including cross program service coordination

  • Protocols for joint planning and funding of services

  • Governance of service plans, including decision making, funding approval, review, adjustment and cessation of joint funding

  • Protocols for information sharing

  • Protocols for consent and participant involvement in decisions and processes

  • Responsibilities for multi system service coordination

  • Shared funding of infrastructure and personnel

  • Funding responsibilities for capacity building and service development in shared areas (including the ILC)

  • Funding reconciliation

    While detailed work is required to draft these rules as well as engage in deep consultation with the States, Territories and other Commonwealth service systems, this work must be done thoroughly. It is not-to-be-missed opportunity for the NDIS and the commonwealth to finally address the many calls to establish functional and effective interface arrangements.

    Thus far, the Commonwealth and the NDIA have shown no inclination to act on anything meaningful in this area. This has resulted it a clear failure to manage the external risks to the scheme’s sustainability that come from cost shifts, gaps in services and the policy decisions of other service systems.

    The movement towards better integrated government services is not new, nor is it revolutionary. As one example, the former head of the Department of Prime Minister and Cabinet, Professor Peter Shergold, identified the need for better structural coordination of government services in work for the Victorian Government in 2014:

          Services need to be wrapped around the individual. A more integrated and
     coordinated service approach lies at the heart of raising productivity in the
       delivery of government services, offering the chance to deliver better
    outcomes at a lower cost.8

    Drafted before full scheme implementation, the APTOS are underpinned by a lack of awareness or incentive for programs to collaborate.

    7 See: https://www.dss.gov.au/sites/default/files/documents/09_2021/ndis-principles-determine-
responsibilities-ndis-and-other-service-1.pdf
8 Shergold, P. Towards a more effective and sustainable community services system. A discussion

    paper, Department of Human Services, Melbourne, 2013: 4.

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As a result, they have made interface interactions primarily concerned with the binary debate of who pays for a service rather than articulating the multidisciplinary ‘joined up’ responses that are so greatly needed.

This is particularly so in the case of the interactions of the NDIS with the health and aged care systems. The Principles have fed an antiquated “closed shop” bureaucratic imperative, which the proposed changes to the Becoming a Participant rules make worse.

As example, despite most disabilities being the result of an adverse health event of some sort and disability often resulting in poor health, the NDIS continues to ignore the ‘enmeshed’ nature of health and disability to argue that some supports are the funding responsibility of health services alone.

Far from looking to embrace a more multidisciplinary approach, the Disability Reform Council’s recent decision that the NDIS would pay for a “range of disability-related health supports”,9 has simply codified the decisions of a number of Administrative Appeals Tribunal (AAT) rulings that have found against the NDIS in these areas.

Similarly, the DRC’s agreement in the same Communiqué that its Hospital Discharge Delay Action Plan “…will address NDIS related issues to promote timely discharge of NDIS participants from public hospitals…”,10 fails to consider just where NDIS participants facing timely discharge from acute care are to be discharged to.

Indeed, without attention to those NDIS administrative processes that determine eligibility, deliver one dimensional planning and inherent delays; without consideration of other elements such as interim accommodation, rapid response home modifications or designing integrated service responses, simply speeding up the discharge ‘timetable’ from hospital will also speed up placement in residential aged care for too many NDIS participants.

The inherent limitations of the COAG’s Applied Principles were well described by the Deputy President of the AAT in the Burchell case in June:

The COAG Principles are a high level, general, statement about what the health authorities are responsible for, and make no allowance for gaps in the service provided. There appears no intention in the COAG document to state how the Act and rules should be interpreted. In my opinion, the COAG principles are not of assistance in understanding the Act or the rules…’

In the Burchell case, the finding was that the NDIS must recognise what is actually provided by health systems, rather than the scheme deciding for itself what those other systems

9 Disability Reform Council Communiqué, 28 June 2019. See https://www.dss.gov.au/sites/default/files/documents/07%202019/communique-drc-28-june-2019.pdf

10 Disability Reform Council Communiqué, op.cit: 1.

11See https://jade.io/article/647731, at paragraph 52.

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should provide. Where there is a gap, it is S34(f)(1) of the Act that must be exercised as it is written.

The proposed changes to the Becoming a Participant rules are an attempt to skirt this ruling. Instead of trying to set the NDIS up in competition with health systems or diminishing the interaction between the health and disability support needs of people, the government and the NDIA must begin to collaborate with these systems.

Further contact For further information about this submission please contact Dr Bronwyn Morkham National Director

Bibliography

Administrative Appeals Tribunal Australia Burchell and National Disability Insurance Agency [2019] AATA 1256 (4 June 2019) Available at https://jade.io/article/647731,

Council of Australian Governments Applied Principles and Tables of Support to determine the responsibilities of the NDIS and other service systems, 2015. Available at https://www.dss.gov.au/the-applied-principles-and-tables-of-support-to-determine-responsibilities-ndis-and-other-service

Costa, B., & Gibson, K. (2017) Rehabilitation models: A scoping review. Alternative rehabilitation models and frameworks for clients with traumatic brain injury and orthopaedic trauma. Melbourne: Institute for Safety, Compensation and Recovery Research.

Department of Health Australian Government response to the Final Report of the Royal Commission into Aged Care Quality and Safety, Canberra, 2021.

Disability Reform Council, Communiqué, 28 June 2019. Available at https://www.dss.gov.au/disability-and-carers-programs-services-government-international-disability-reform-council/communique-28-june-2019

Muenchberger, H., Kendall, E., & Collings, C. (2011). “Beyond Crisis Care in Brain Injury Rehabilitation in Australia: A Conversation Worth Having.” Journal of Primary Care & Community Health, 2(1): 60-64.

Shergold, P. Towards a more effective and sustainable community services system. A discussion paper, Department of Human Services, Melbourne, 2013.

United Nations Convention on the Rights of Persons with Disabilities (CRPD) Available at https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html